It is the holiday season again. With it come all the emotions and feelings known to mankind (and womankind)! Joy, peace, happiness, loneliness, stress, cold, warmth, dreariness, dread, family tensions, love, laughter, sorrow, to name just a few. The business of unfinished shopping, wrapping, baking, and parties crowd out what the season is really about--the birth of a babe in a manger long ago in Bethlehem. And for those that are grieving, the feelings are just intensified. No matter how long it has been since the lost of a loved one, memories flood your eyes, and water drops to your shirt or blouse. Like Willie Nelson says in his new song "It is not something you get over, it is something you get through." And many will feel, I am afraid, that they just have to get through the holidays.
For me, some memories are especially poignant even though I technically haven't lost Bob yet.
Kneeling in church together, our arms intertwined, especially when the church is decorated beautifully.
Hearing a favorite song on the car radio, and reaching over to take his hand, and have him squeeze mine. One of our favorites was when Elvis sang "Have I told you lately that I love you?"
Cuddling up to sleep when baby it is cold outside!
Watching a football game together, and "sometimes" yelling till we were hoarse. He especially liked to watch Notre Dame--the "fighting Irish"! (And he did root for the Chiefs!)
Decorating the house for Christmas together. His favorite job was putting the candle lights in the windows.
Watching him enjoy the fruits of my labor when I baked the special foods of the season. He even liked fruitcake, so I baked them for him from an old recipe that he liked.
Preparing the Christmas cards together. His job was to put the stamps and the return address labels on. We would comment about each friend and family that the card was addressed to, and hope that we would get a letter or a note this year instead of just a signature on the card!
For some reason, it has been especially hard for me to do the cards this year. Do I sign both of our names on the card? He doesn't know they are even being sent out. (I finally ended up signing both our names, since the enclosed picture is of both of us.)
I found the following in www.thegrieftoolbox.com. It is the Bereaved Holiday Season Bill of Rights by Tanya Lord. "As a grieving person you have certain inalienable rights that cannot be taken away from you by those who may not understand."
When grieving during the holiday season you have the right to:
*To feel what you feel and to be politely honest with others about it. If you do not feel merry, cheerful or otherwise festive then say so.
*The right to not share your feelings if you would rather. "I am fine" is okay to say.
*To not go to parties or family gatherings where your loved one and your grief are not welcome.
*To take time for yourself. Whether this is a walk alone, a day in bed or some other momentary escape.
*To cry when it hurts, to laugh when something is funny, and to smile when you are happy, and to not feel guilty about any of it.
*To have your loved one remembered in a way that is meaningful to you.
*To change your mind over and over during any get together, event or party. You may not know what you can or cannot handle until faced with it.
*To change traditions when necessary or desired. Traditions are supposed to bring comfort, not distress.
*To enjoy your holidays. Your loved one is going to be celebrating with you. It doesn't mean that you have forgotten or are being disrespectful. Living is a wonderful way to honor them.
Bob is still doing as well as can be expected. On the weekends different friends come with me to
The Piper and we have sing-a-longs of Christmas carols and Christmas songs with the residents. It is amazing how many of the songs they know and remember the words to! You should hear them sing "Rockin' around the Christmas tree" and "We wish you a merry Christmas, and a Happy New Year."
Last week we shared memories of Christmas that were special to them--cutting the tree, ice skating, blizzards and warm bonfires. Even in that incongruous setting, I could see joy in their eyes. I don't know if any of them rode in a one horse open sleigh, but they sure can ring the bells when we sing "Jingle Bells"!
During this special season I hope you will join me in finding things that will make you happy, and give you peace. As it said above, "Living is a wonderful way to honor them." So go ahead! Live
life to the fullest, and take time to enjoy it.
Love to each of you,
Betty
Tuesday, December 4, 2018
Monday, November 12, 2018
We are entering the Thanksgiving season and I have a lot to be thankful for. The last month Bob has really been alert, engaged and happy. He is speaking in full sentences, something he has not done for a year. Some of them make sense, and some don't, but I am thankful for anything I can get! Recently he mentioned the words "General Conference". I tried to pry further, but that was all he cared to comment at that moment. What blew me away was that is was during the time the annual council were taking place and the discussions were quite significant to the cause of women's ordination that Bob has always been passionately in favor of. He was always quite involved in annual council when he worked at the General Conference headquarters in Maryland. There is no way he could have been aware of that timing. Or was there.......
I am so thankful for the assurance that hospice is there. I am so thankful for the caregivers at The Piper. They do not have an easy job, and I know I could not do that type of nursing. I would much rather do acute care where patience is not continually called for. Last week The Piper had a couples lunch, complete with dim lights, soft music and gourmet food. Bob can feed himself again (he was not feeding himself this summer) and the lunch with only 4 couples was delightful. I have a whole new circle of friends as a result of Bob's illness, and they are a blessing to me, and I hope I am a blessing to them. I am so thankful that God is caring for Bob through the hands and hearts of others, and I am at peace.
"There is much pain to endure when watching a loved one with dementia.
There is the pain of perpetual grief. There is the raw wound of continual loss.
There is the struggle to preserve their dignity, and the desire
to respect the present and cling to the past.
However
in the midst of the heartache there is a small glimmer of light
that exists to remind us of the things that dementia can't take away--
the warmth of a touch, the importance of smiles and laughter
and the knowledge of what it truly means to experience unconditional love and acceptance."
---author unknown
"How do you spell love?"--Piglet
"You don't spell love, you are in love."--Pooh
I am so sad as I watch and hear about the devastation and chaos in California. I cannot get the
people there off my mind, and I cannot imagine what their Thanksgiving will be like. I am sure it will come down to the fact that they are thankful they are alive, and are grateful for the dedication of the firefighters and relief workers. What the world needs now is love and compassion for those whom we share this planet with. I hope I can share that love in my little corner of the world. I hope I can brighten someone's life with just a smile, or a simple touch on the arm. I hope I can offer a shoulder to cry on, if that is what they need. Bob's favorite saying used to be "I love you, a bushel and a peck, and a hug around the neck." And he gave a lot of them!
"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow."---Melody Beattie
Happy Thanksgiving everyone!
Betty
I am so thankful for the assurance that hospice is there. I am so thankful for the caregivers at The Piper. They do not have an easy job, and I know I could not do that type of nursing. I would much rather do acute care where patience is not continually called for. Last week The Piper had a couples lunch, complete with dim lights, soft music and gourmet food. Bob can feed himself again (he was not feeding himself this summer) and the lunch with only 4 couples was delightful. I have a whole new circle of friends as a result of Bob's illness, and they are a blessing to me, and I hope I am a blessing to them. I am so thankful that God is caring for Bob through the hands and hearts of others, and I am at peace.
"There is much pain to endure when watching a loved one with dementia.
There is the pain of perpetual grief. There is the raw wound of continual loss.
There is the struggle to preserve their dignity, and the desire
to respect the present and cling to the past.
However
in the midst of the heartache there is a small glimmer of light
that exists to remind us of the things that dementia can't take away--
the warmth of a touch, the importance of smiles and laughter
and the knowledge of what it truly means to experience unconditional love and acceptance."
---author unknown
"How do you spell love?"--Piglet
"You don't spell love, you are in love."--Pooh
I am so sad as I watch and hear about the devastation and chaos in California. I cannot get the
people there off my mind, and I cannot imagine what their Thanksgiving will be like. I am sure it will come down to the fact that they are thankful they are alive, and are grateful for the dedication of the firefighters and relief workers. What the world needs now is love and compassion for those whom we share this planet with. I hope I can share that love in my little corner of the world. I hope I can brighten someone's life with just a smile, or a simple touch on the arm. I hope I can offer a shoulder to cry on, if that is what they need. Bob's favorite saying used to be "I love you, a bushel and a peck, and a hug around the neck." And he gave a lot of them!
"Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow."---Melody Beattie
Happy Thanksgiving everyone!
Betty
Sunday, September 9, 2018
Today is Bob's 78th birthday. Permit me, if you will, to be a bit introspective. When he was placed on hospice about a year and a half ago, I was sure he wouldn't make it to his 77th birthday, let alone his 78th. I am thankful for the borrowed time we have been given. It has been a blessing to me, and I cherish it. His brother was here to see him from Baltimore, and Bob looked at Steve like a conspirator and laughed and said "I know you"; probably thinking of antics in their past life. But he couldn't say his name. Our daughter Valerie was here for his birthday and she told him she loved him and he answered back "I love you too." But he couldn't say her name. It is weird that he never has the blank look in his eyes that other residents have. He does when he first wakes up, and it takes him awhile to wake up, but then he seems more aware and more communicative than he was a year ago.
I don't know how many of you watched the story on "60 Minutes" with Carol and Mike. CBS has been following them for a decade from when she was diagnosed to the present. I watched it with tears in my eyes, as their story parallels ours almost exactly. She was diagnosed in 2008; Bob in 2009. They have been married 54 years; we just celebrated our 55th. Mike said "I am a big NYC cop, I can care for her at home, no problem." I said, "I am a nurse, I can care for Bob at home, no problem." But 10 years later Mike was to the brink of suicide, and has placed her in a facility. I was not to the brink of suicide, but I knew I had to place Bob before I became severely depressed.
The program went on to give some statistics. For every one Alzheimer's patient, 10 people are affected. Treatment is usually started too late; it should be started when symptoms are first noticed. A big part of Alzheimer's research is now focusing on how to detect the disease earlier. A guideline for how to live the rest of your life and end of life choices should be discussed with next of kin, and those wishes should be respected as much as possible. Most Alzheimer's patients live less than 10 years; most live 4-8 years. But I have a friend whose husband was diagnosed 18 years ago, so it is a very broad spectrum. On a side note--remember to make a copy of your new Medicare card and keep it at home. It is not your social security number any more--thankfully! And give the new number to all your care providers!
Over the last few years my patience has been tested and I have wondered "where do I go from here."
But so many times the answers have come to me and I can't help but say "That had to be you, God".
And I couldn't have made it this far without the help of family and friends and a wonderful support group. I have talked in this blog about Bob's stamp collection and wondered what to do with it. After contacting several dealers I came up with the same answer every time--it is worth nothing, just use the stamps on your letters (which I don't write any more!) But I have started giving sheets of them away as gifts, as people do use them occasionally! I sent one to my cousin in South Dakota. Her father was a stamp collector, and Bob initially got interested through him. Now my cousin has his collection, and she still collects a little. This cousin is more like a sister to me than a cousin, except we don't fight. So we were chatting on the phone and I was telling her I was flumoxxed as to know what to do with Bob's collection. Long story short, it turns out that she still is in contact with her high school history teacher who is still an avid stamp collector. And better yet, he wants stamps from all over the world so he can work with underprivileged children and get them interested in stamp collecting just for the joy of it, and the knowledge it brings. Bob would have liked nothing better to happen to his stamp collection. So I loaded the whole collection in the car, plus many loose stamps I had from a few years as a child in Africa, and drove to South Dakota. Not only did we have a great time, another closet in my house is cleaned out! It had to be a God thing!
As I reflect further, I can't help of thinking about my friends who have loved and lost recently. A spouse, a son, and even a beloved pet. I think of Nancy Reagan and the love of her life, President Ronald Reagan, who had Alzheimer's. His daughter Patti Davis wrote a book "The Long Goodbye: Memories of My Father". When will it be MY turn?
From my favorite website: glmidailyinspiration@gmail.com--The truth is, we always know in our heart the proper course of action to take in any given circumstance. But too often, we allow our doubts, fears, anxieties, etc. to speak louder than that voice of reason, and convince us in our minds to do something contrary...possibly leading to a long and difficult journey down the wrong path. Taking the time to "be still", and listen to your heart and the "still small voice" of the Spirit, will pay endless dividends.
A final quote from The Land Before Time--
Let your heart guide you. It whispers, so listen closely.
Until next time,
Betty
I don't know how many of you watched the story on "60 Minutes" with Carol and Mike. CBS has been following them for a decade from when she was diagnosed to the present. I watched it with tears in my eyes, as their story parallels ours almost exactly. She was diagnosed in 2008; Bob in 2009. They have been married 54 years; we just celebrated our 55th. Mike said "I am a big NYC cop, I can care for her at home, no problem." I said, "I am a nurse, I can care for Bob at home, no problem." But 10 years later Mike was to the brink of suicide, and has placed her in a facility. I was not to the brink of suicide, but I knew I had to place Bob before I became severely depressed.
The program went on to give some statistics. For every one Alzheimer's patient, 10 people are affected. Treatment is usually started too late; it should be started when symptoms are first noticed. A big part of Alzheimer's research is now focusing on how to detect the disease earlier. A guideline for how to live the rest of your life and end of life choices should be discussed with next of kin, and those wishes should be respected as much as possible. Most Alzheimer's patients live less than 10 years; most live 4-8 years. But I have a friend whose husband was diagnosed 18 years ago, so it is a very broad spectrum. On a side note--remember to make a copy of your new Medicare card and keep it at home. It is not your social security number any more--thankfully! And give the new number to all your care providers!
Over the last few years my patience has been tested and I have wondered "where do I go from here."
But so many times the answers have come to me and I can't help but say "That had to be you, God".
And I couldn't have made it this far without the help of family and friends and a wonderful support group. I have talked in this blog about Bob's stamp collection and wondered what to do with it. After contacting several dealers I came up with the same answer every time--it is worth nothing, just use the stamps on your letters (which I don't write any more!) But I have started giving sheets of them away as gifts, as people do use them occasionally! I sent one to my cousin in South Dakota. Her father was a stamp collector, and Bob initially got interested through him. Now my cousin has his collection, and she still collects a little. This cousin is more like a sister to me than a cousin, except we don't fight. So we were chatting on the phone and I was telling her I was flumoxxed as to know what to do with Bob's collection. Long story short, it turns out that she still is in contact with her high school history teacher who is still an avid stamp collector. And better yet, he wants stamps from all over the world so he can work with underprivileged children and get them interested in stamp collecting just for the joy of it, and the knowledge it brings. Bob would have liked nothing better to happen to his stamp collection. So I loaded the whole collection in the car, plus many loose stamps I had from a few years as a child in Africa, and drove to South Dakota. Not only did we have a great time, another closet in my house is cleaned out! It had to be a God thing!
As I reflect further, I can't help of thinking about my friends who have loved and lost recently. A spouse, a son, and even a beloved pet. I think of Nancy Reagan and the love of her life, President Ronald Reagan, who had Alzheimer's. His daughter Patti Davis wrote a book "The Long Goodbye: Memories of My Father". When will it be MY turn?
From my favorite website: glmidailyinspiration@gmail.com--The truth is, we always know in our heart the proper course of action to take in any given circumstance. But too often, we allow our doubts, fears, anxieties, etc. to speak louder than that voice of reason, and convince us in our minds to do something contrary...possibly leading to a long and difficult journey down the wrong path. Taking the time to "be still", and listen to your heart and the "still small voice" of the Spirit, will pay endless dividends.
A final quote from The Land Before Time--
Let your heart guide you. It whispers, so listen closely.
Until next time,
Betty
Wednesday, July 18, 2018
I haven't posted a blog in awhile. I have Libby, our 8 year old granddaughter with me for the summer, and we have been busy! But we go out to see Pop Pop every 2 or 3 days and she loves to push him around in the wheel chair and feed him if we are there at mealtime or take him a special treat. He brightens visibly when she enters the room, as do the other residents. I got Libby a doll that looks amazingly like a real baby. She has taken it when we go visit and Bob will hold the doll just like he would a real baby and talk to it just like he would a baby. After we had a sing-a-long one afternoon, Libby gave the doll to another resident to hold and the lady sat there and sang to the doll for at least half an hour.
Bob is on a plateau right now. His condition isn't changing for the better or for the worse. Memorial Day weekend I came home from picking up Libby in TN, Valerie and her family all came here. We were having breakfast one morning when the nurse from The Piper called and said Bob was unresponsive. They didn't witness it, but thought he had had a seizure as he had bitten his tongue and blood was coming from his mouth. He has not had a seizure before, so this was a surprise. But the hospice nurse came and checked him and also thought that was what had happened. She said it was just the progression of the disease. I didn't know that could happen, but I googled it, and it evidently is part of the disease process. By the time we got there though, he was starting to respond again, and by afternoon was pretty well recovered.
One incident happened this summer that caught me off guard. I would expect it, if he had passed and I was changing names to just my name on accounts. At the advice of my attorney, the house and car are changed to just be in my name, but I haven't worried about utility accounts, and probably wouldn't ever worry about them. His name is on all those accounts, but they certainly don't say anything when I pay the bills in my name! But it was different with a cable company who shall remain unnamed! I tried to cancel a channel and they asked to speak to Robert for verification, since the account was in his name. I explained why I couldn't do that, and they said I would have to come to their office with my power of attorney papers.....I told them they hadn't said a word all the 40 years that my name was on the credit card that had the autopay charged to it. When I took the papers in the office in a file folder and told them I wanted to change the account to my name, they didn't ask to see them, just told me they were so sorry for my loss. I let it go at that!
I read a book recently by Dick Edwards, a retired Mayo Clinic eldercare specialist. It is called "Mom, Dad...Can We Talk?" It is written for the children of aging parents who are trying to figure out solutions for their parents "golden" years. I loved this: "I noticed when my parents stopped trying to stay young, they began to enjoy growing older." (paraphrased)
My whole blog is written for the purpose of trying to negotiate that rocky road and be prepared for surprises. But my daily devotion site "Guiding Light Ministries International" had this gem this morning: It was titled "Stop, in the Name of Love"
Sometimes, you just have to stop worrying, wondering, and doubting. Have faith that things will work out, maybe not how you planned, but just how they're meant to be.
We often tend to over-think things...doing mental gymnastics, worrying and fretting over very possibility and detail, trying to figure out how to make things work out the we that WE think they should. But there comes a time, when you simply have to lay all that aside and take a step of faith, knowing that things will always work out for your certain good. Life becomes SO much less complicated when you do....moving forward without preconceived notions, knowing and trusting that all will fall into place, if you only believe! (author unknown)
Libby told me the other morning when she woke up that she had a dream during the night where she was being chased by a bunch of old people in wheelchairs! Maybe they were enjoying the "thrill of the chase"! But I am going to get a motorized wheelchair when that time comes, so I can keep ahead of her and maybe pop wheelies while I am at it!
Yours to enjoying growing older!
Betty
Bob is on a plateau right now. His condition isn't changing for the better or for the worse. Memorial Day weekend I came home from picking up Libby in TN, Valerie and her family all came here. We were having breakfast one morning when the nurse from The Piper called and said Bob was unresponsive. They didn't witness it, but thought he had had a seizure as he had bitten his tongue and blood was coming from his mouth. He has not had a seizure before, so this was a surprise. But the hospice nurse came and checked him and also thought that was what had happened. She said it was just the progression of the disease. I didn't know that could happen, but I googled it, and it evidently is part of the disease process. By the time we got there though, he was starting to respond again, and by afternoon was pretty well recovered.
One incident happened this summer that caught me off guard. I would expect it, if he had passed and I was changing names to just my name on accounts. At the advice of my attorney, the house and car are changed to just be in my name, but I haven't worried about utility accounts, and probably wouldn't ever worry about them. His name is on all those accounts, but they certainly don't say anything when I pay the bills in my name! But it was different with a cable company who shall remain unnamed! I tried to cancel a channel and they asked to speak to Robert for verification, since the account was in his name. I explained why I couldn't do that, and they said I would have to come to their office with my power of attorney papers.....I told them they hadn't said a word all the 40 years that my name was on the credit card that had the autopay charged to it. When I took the papers in the office in a file folder and told them I wanted to change the account to my name, they didn't ask to see them, just told me they were so sorry for my loss. I let it go at that!
I read a book recently by Dick Edwards, a retired Mayo Clinic eldercare specialist. It is called "Mom, Dad...Can We Talk?" It is written for the children of aging parents who are trying to figure out solutions for their parents "golden" years. I loved this: "I noticed when my parents stopped trying to stay young, they began to enjoy growing older." (paraphrased)
My whole blog is written for the purpose of trying to negotiate that rocky road and be prepared for surprises. But my daily devotion site "Guiding Light Ministries International" had this gem this morning: It was titled "Stop, in the Name of Love"
Sometimes, you just have to stop worrying, wondering, and doubting. Have faith that things will work out, maybe not how you planned, but just how they're meant to be.
We often tend to over-think things...doing mental gymnastics, worrying and fretting over very possibility and detail, trying to figure out how to make things work out the we that WE think they should. But there comes a time, when you simply have to lay all that aside and take a step of faith, knowing that things will always work out for your certain good. Life becomes SO much less complicated when you do....moving forward without preconceived notions, knowing and trusting that all will fall into place, if you only believe! (author unknown)
Libby told me the other morning when she woke up that she had a dream during the night where she was being chased by a bunch of old people in wheelchairs! Maybe they were enjoying the "thrill of the chase"! But I am going to get a motorized wheelchair when that time comes, so I can keep ahead of her and maybe pop wheelies while I am at it!
Yours to enjoying growing older!
Betty
Saturday, May 19, 2018
I am back from my second trip to Israel, and it was a great trip. This year it was a month earlier, so it wasn't so hot, which made it more enjoyable. This one was a little more exciting, however. We had toured right near the Golan heights, and our Israeli guide was telling how Israel is always on the alert for attack, as they are surrounded by unfriendly neighbors. That evening we took a boat ride on the Sea of Galilee, had a wonderful dinner on the dock, and then went to bed. I awoke sometime during the night to a loud boom, and jets screaming overheard. I thought "Huh, I wonder what all that was," and then turned over and went back to sleep. The next morning I woke to hear the news on my phone that some missiles had been fired from the Golan Heights, and the flashes could be seen from Tiberius, where we were staying. Also there were notifications to me on my Facebook. When the guide got on the bus he said, "Well, Israel's iron dome worked well again last night.."
This tour was with Precept Ministries, which I wasn't familiar with until the trip. They do inductive Bible study and have study groups all over the US and all over the world. Inductive Bible study is a way of investigating God's word that includes three major steps: observation, interpretation, and application. Kay Arthur, the co-founder of Precept Ministries, was on the trip and gave the daily Bible teaching. She is 86 years old, but very spry, mentally and physically. Her husband was the other co-founder, but he died a few years ago from Alzheimer's. She was telling that she was to the point of not being able to care for him and was praying about what to do. One evening she had a hard time getting him in bed, and she fell in bed exhausted beside him. At 2am she awakened and put her hand on his chest, and discovered he wasn't breathing. She checked for a pulse and there was none. She said to herself, "Oh, well there is nothing I can do about this now" and turned over and went back to sleep. She is also a nurse, so maybe that explains THAT, but I am here to tell you this nurse would NOT have had that same reaction....
You may have noticed in my last blog that one option I didn't mention when making decisions was having the family member with Alzheimer's move in with the children. I just couldn't think of anything wise to say last month about that, and I don't have anything wise to say this month either. Sometimes there is no other option because of finances or other reasons. But the days of the Waltons where all is sweetness and light when 2 families merge, is gone, even if there isn't the extra burden of Alzheimer's. I have seen some cute little "granny pods" that you build in the back yard, so you are very close, but everyone has their own space. At the risk of repeating information from previous blogs, I will give a few reminders I chose from the book "The 36 hour day" by Nancy Mace and Peter Rabins. They were especially helpful to me when Bob was still at home.
1. Try to solve your most frustrating problems one at a time. Families tell us that the day-to-day problems often seem to be the most insurmountable. Getting Mother to take her bath or getting supper prepared, eaten, and cleaned up can become daily ordeals. If you are at the end of your rope, single out one thing that you can change to make life easier, and work on that. Sometimes changing small things makes a big difference.
2. Get enough rest. One of the dilemmas families often face is that the caregiver may not get enough rest or may not have the opportunity to get away from his caregiving responsibilities. This can make the caregiver less patient and less able to tolerate irritating behavioral symptoms. If things are getting out of hand, ask yourself if this is happening to you. If so, you may want to focus on finding ways to get more rest or more frequent breaks from your caregiving responsibilities.
3. Maintain a sense of humor; it will get you through many crises. Sharing your experiences with other families will help you. Surprisingly, these groups of smilies often find their shared experiences funny as well as sad.
Let me add another commercial here! Find a support group (call the Alzheimer's Association) and attend regularly. I think I can speak for my support group that it is an invaluable tool. We have become very close, and formed lasting friendships. We all say we wish we could meet more than once a month! But we also get together on our own now, and go out to lunch individually or in a group.
The bottom line is to take care of yourself. Ask for help. You--the caregiver--are at an increased risk for depression and illness, especially if you don't receive support from family, friends, your church, and the community. Your loved one will change, and your burdens will become more demanding.
The person you love isn't who he or she used to be. The behavior can become increasingly difficult. Remind yourself, "This is the way it is." That is easy to say, but when you are going through it, you wonder if you still love them, especially when they say hurtful things, that they never would have said before. It may surprise you when I say this, but I am thankful that Bob and I have been given the time since he has been in the care facility. He is back to his sweet self, and I have fallen in love with him all over again.
At the end of each day, say two things aloud to yourself:
1. "Today I did the best I was capable of doing." That doesn't mean you were perfect, but you did what you could.
2. "All I can do is all I can do". Repeat the words until they calm you and help you realize that you can't do everything you want. You do only what you can.
And at the end of the day (or end of life) isn't that what life is all about?
Betty
This tour was with Precept Ministries, which I wasn't familiar with until the trip. They do inductive Bible study and have study groups all over the US and all over the world. Inductive Bible study is a way of investigating God's word that includes three major steps: observation, interpretation, and application. Kay Arthur, the co-founder of Precept Ministries, was on the trip and gave the daily Bible teaching. She is 86 years old, but very spry, mentally and physically. Her husband was the other co-founder, but he died a few years ago from Alzheimer's. She was telling that she was to the point of not being able to care for him and was praying about what to do. One evening she had a hard time getting him in bed, and she fell in bed exhausted beside him. At 2am she awakened and put her hand on his chest, and discovered he wasn't breathing. She checked for a pulse and there was none. She said to herself, "Oh, well there is nothing I can do about this now" and turned over and went back to sleep. She is also a nurse, so maybe that explains THAT, but I am here to tell you this nurse would NOT have had that same reaction....
You may have noticed in my last blog that one option I didn't mention when making decisions was having the family member with Alzheimer's move in with the children. I just couldn't think of anything wise to say last month about that, and I don't have anything wise to say this month either. Sometimes there is no other option because of finances or other reasons. But the days of the Waltons where all is sweetness and light when 2 families merge, is gone, even if there isn't the extra burden of Alzheimer's. I have seen some cute little "granny pods" that you build in the back yard, so you are very close, but everyone has their own space. At the risk of repeating information from previous blogs, I will give a few reminders I chose from the book "The 36 hour day" by Nancy Mace and Peter Rabins. They were especially helpful to me when Bob was still at home.
1. Try to solve your most frustrating problems one at a time. Families tell us that the day-to-day problems often seem to be the most insurmountable. Getting Mother to take her bath or getting supper prepared, eaten, and cleaned up can become daily ordeals. If you are at the end of your rope, single out one thing that you can change to make life easier, and work on that. Sometimes changing small things makes a big difference.
2. Get enough rest. One of the dilemmas families often face is that the caregiver may not get enough rest or may not have the opportunity to get away from his caregiving responsibilities. This can make the caregiver less patient and less able to tolerate irritating behavioral symptoms. If things are getting out of hand, ask yourself if this is happening to you. If so, you may want to focus on finding ways to get more rest or more frequent breaks from your caregiving responsibilities.
3. Maintain a sense of humor; it will get you through many crises. Sharing your experiences with other families will help you. Surprisingly, these groups of smilies often find their shared experiences funny as well as sad.
Let me add another commercial here! Find a support group (call the Alzheimer's Association) and attend regularly. I think I can speak for my support group that it is an invaluable tool. We have become very close, and formed lasting friendships. We all say we wish we could meet more than once a month! But we also get together on our own now, and go out to lunch individually or in a group.
The bottom line is to take care of yourself. Ask for help. You--the caregiver--are at an increased risk for depression and illness, especially if you don't receive support from family, friends, your church, and the community. Your loved one will change, and your burdens will become more demanding.
The person you love isn't who he or she used to be. The behavior can become increasingly difficult. Remind yourself, "This is the way it is." That is easy to say, but when you are going through it, you wonder if you still love them, especially when they say hurtful things, that they never would have said before. It may surprise you when I say this, but I am thankful that Bob and I have been given the time since he has been in the care facility. He is back to his sweet self, and I have fallen in love with him all over again.
At the end of each day, say two things aloud to yourself:
1. "Today I did the best I was capable of doing." That doesn't mean you were perfect, but you did what you could.
2. "All I can do is all I can do". Repeat the words until they calm you and help you realize that you can't do everything you want. You do only what you can.
And at the end of the day (or end of life) isn't that what life is all about?
Betty
Tuesday, May 1, 2018
As promised, this will be a continuation from the talk given by Connie Michaelis, lifestyle consultant at The Piper. Hopefully, it will help you think about "what", "when", and "why".
The #1 threat to a person as they age is loneliness caused by being isolated. It threatens one's physical health as much as mental health, and is as detrimental to older people as smoking and high blood pressure. We need to hang out with people and be social, but too often children and grandchildren are too busy with their own lives. All through life, people plan for the future. They plan where they will go to school, they plan for their jobs, they plan for their families. So as one ages, it is also important to have a strategy for the future. After you retire is when you are just old enough to find purpose and a passion in life, and have time to do it (ha, ha!) But until you face your own mortality and the fact that you will someday die, you cannot live. Planning for the future and preparing for all circumstances can lead to a life of peace, happiness and satisfaction. You need to start early in making decisions. 86% of people will need help as they age, so it is important to get a plan--and then hope you die in your sleep and don't have to use it! But so saying, everything you do in life is a gamble. So at the same time, older people need to have a sense of autonomy, and their wishes and decisions need to be respected.
Retirement used to look much different from it does today. Social Security was born August 14, 1935. The monthly payment in 1963 was about $22. There were poor houses. There were mental institutions--(believe me, I worked at one during my psychiatric rotation in nursing school.) The nursing homes looked just like hospitals, giving the inference that the people living there were sick.
So let's talk about the different options available now. It is so important to think about this while you still have the option to choose, so you can have strategies (maybe several) in place, so you won't be unprepared or surprised.
The first I will talk about is remaining in your own home. Your home is your place of safety and security. It is the place where memories are made. As we talked about last time, we are surrounded by our "treasures". But when Bob and I moved into our present home 28 years ago (really?) we didn't even think about the stairs being a problem. It was nice to have all the bedrooms upstairs! But in the end, that was the factor that led to Bob having to move to a safer place. He WAS going to fall down the stairs. So how your home is set up isn't always conducive to having home health care come in to help in the home.
Becoming more and more popular, at least in this area, are the CCRCs--continuing care retirement communities. They are typically operated with a buy-in plan, though some are now offering monthly rent in their communities--to compete with other newer facilities, I imagine! The buy in plan covers your care from the time you move in independently, through assisted living, and nursing home care. Some also have dementia care and rehab. And now I think they are more apt to help you set up a plan that would leave assets to your heirs upon your death than they used to be. The ones I have toured typically want you to live in independent living for at least 2 years before you move to more care, so they will assess your mobility etc. before you move in. They are very social, with a lot of amenities and activities and have meal plans. You also pay a monthly fee to cover utilities, cleaning, food, etc. Be careful though! Some stay at the monthly rate you sign in with though out your life there, with only cost of living increases. Others, you start at one rate, and then the rate increases as your level of care increases. So there is a lot to think about. If you should put down a deposit while you are on a waiting list or while you are thinking about it, be sure to ask if the deposit is refundable.
Also hugely popular are the independent living facilities which may or may not have assisted living available that are month-to-month rent and there is no continuum of care. They usually have meal plans, but there is also a facility right down the street from me that is called Village Co-operative, that
does not. These facilities all have beautiful amenities, opportunities for socialization, and come in all different price ranges. (And NO housework, as they do the cleaning!) Also, home health agencies can come in these facilities and help with medical care for the short term, or even long term, I imagine. A thought about these facilities is that you can put a deposit down while you are on the waiting list, or just want to wait awhile until you make your final decision, and typically you would get the deposit (usually about $500) back if you decide you don't want to move in, or it would be applied to your first months rent if you do move in. So you could conceivably have deposits down in more than one place. This is an overwhelming thing to think about, but probably a year in advance of moving in is a good timeline to start thinking about it. As I have helped my friend tour these places, I am pleased to see that different agencies are working together, and are making helpful suggestions.
I am just so glad I found The Piper for Bob, after touring many others. It is a household model, and other facilities come to see it. Instead of long halls with closed doors the majority of the residents are out in the common areas. The food is cooked in the kitchen right there and they all are served and eat at a common table (a few spill over to tables in the sunroom.) It is a bright and cheery place and Bob seems so content there, and that makes me happy.
I would like to close with a paragraph from Guiding Light Ministries International:
"There IS a place in which we can abide, whatever external circumstances may come, where we can maintain a sense of peace and joy throughout whatever events may be unfolding in our lives. And it is within each and every one of us. You must find that place...for there is nothing else that can compare, and nothing else that will ever satisfy the soul of man!"
I am heading back to Israel in a few days. I solicit your prayers as I again walk where Jesus walked.
This summer will be very busy with grandkids here, but I will try to give updates on Bob. (They may be much shorter than this post, as he seems to be on a plateau at present.)
Betty
The #1 threat to a person as they age is loneliness caused by being isolated. It threatens one's physical health as much as mental health, and is as detrimental to older people as smoking and high blood pressure. We need to hang out with people and be social, but too often children and grandchildren are too busy with their own lives. All through life, people plan for the future. They plan where they will go to school, they plan for their jobs, they plan for their families. So as one ages, it is also important to have a strategy for the future. After you retire is when you are just old enough to find purpose and a passion in life, and have time to do it (ha, ha!) But until you face your own mortality and the fact that you will someday die, you cannot live. Planning for the future and preparing for all circumstances can lead to a life of peace, happiness and satisfaction. You need to start early in making decisions. 86% of people will need help as they age, so it is important to get a plan--and then hope you die in your sleep and don't have to use it! But so saying, everything you do in life is a gamble. So at the same time, older people need to have a sense of autonomy, and their wishes and decisions need to be respected.
Retirement used to look much different from it does today. Social Security was born August 14, 1935. The monthly payment in 1963 was about $22. There were poor houses. There were mental institutions--(believe me, I worked at one during my psychiatric rotation in nursing school.) The nursing homes looked just like hospitals, giving the inference that the people living there were sick.
So let's talk about the different options available now. It is so important to think about this while you still have the option to choose, so you can have strategies (maybe several) in place, so you won't be unprepared or surprised.
The first I will talk about is remaining in your own home. Your home is your place of safety and security. It is the place where memories are made. As we talked about last time, we are surrounded by our "treasures". But when Bob and I moved into our present home 28 years ago (really?) we didn't even think about the stairs being a problem. It was nice to have all the bedrooms upstairs! But in the end, that was the factor that led to Bob having to move to a safer place. He WAS going to fall down the stairs. So how your home is set up isn't always conducive to having home health care come in to help in the home.
Becoming more and more popular, at least in this area, are the CCRCs--continuing care retirement communities. They are typically operated with a buy-in plan, though some are now offering monthly rent in their communities--to compete with other newer facilities, I imagine! The buy in plan covers your care from the time you move in independently, through assisted living, and nursing home care. Some also have dementia care and rehab. And now I think they are more apt to help you set up a plan that would leave assets to your heirs upon your death than they used to be. The ones I have toured typically want you to live in independent living for at least 2 years before you move to more care, so they will assess your mobility etc. before you move in. They are very social, with a lot of amenities and activities and have meal plans. You also pay a monthly fee to cover utilities, cleaning, food, etc. Be careful though! Some stay at the monthly rate you sign in with though out your life there, with only cost of living increases. Others, you start at one rate, and then the rate increases as your level of care increases. So there is a lot to think about. If you should put down a deposit while you are on a waiting list or while you are thinking about it, be sure to ask if the deposit is refundable.
Also hugely popular are the independent living facilities which may or may not have assisted living available that are month-to-month rent and there is no continuum of care. They usually have meal plans, but there is also a facility right down the street from me that is called Village Co-operative, that
does not. These facilities all have beautiful amenities, opportunities for socialization, and come in all different price ranges. (And NO housework, as they do the cleaning!) Also, home health agencies can come in these facilities and help with medical care for the short term, or even long term, I imagine. A thought about these facilities is that you can put a deposit down while you are on the waiting list, or just want to wait awhile until you make your final decision, and typically you would get the deposit (usually about $500) back if you decide you don't want to move in, or it would be applied to your first months rent if you do move in. So you could conceivably have deposits down in more than one place. This is an overwhelming thing to think about, but probably a year in advance of moving in is a good timeline to start thinking about it. As I have helped my friend tour these places, I am pleased to see that different agencies are working together, and are making helpful suggestions.
I am just so glad I found The Piper for Bob, after touring many others. It is a household model, and other facilities come to see it. Instead of long halls with closed doors the majority of the residents are out in the common areas. The food is cooked in the kitchen right there and they all are served and eat at a common table (a few spill over to tables in the sunroom.) It is a bright and cheery place and Bob seems so content there, and that makes me happy.
I would like to close with a paragraph from Guiding Light Ministries International:
"There IS a place in which we can abide, whatever external circumstances may come, where we can maintain a sense of peace and joy throughout whatever events may be unfolding in our lives. And it is within each and every one of us. You must find that place...for there is nothing else that can compare, and nothing else that will ever satisfy the soul of man!"
I am heading back to Israel in a few days. I solicit your prayers as I again walk where Jesus walked.
This summer will be very busy with grandkids here, but I will try to give updates on Bob. (They may be much shorter than this post, as he seems to be on a plateau at present.)
Betty
Thursday, April 19, 2018
Tax day has come and gone, and I am a happy woman! For the first time in many years, we got a refund! It is a dubious joy, as the reason for the refund is that I was able to deduct Bob's care. But it was over a month's rent at The Piper, and that is not to be sneezed at. Just the fact that we got a refund at all is cause for celebration!
I traveled to the beautiful state of Tennessee to be with the grandkids while they were on Spring break. It was a breath of fresh air (if you could remove all the pollen) from the hiccuping that we are experiencing here as Miss Spring tries to make her appearance. The redbuds and dogwoods were blooming, and I sang at full voice to CDs that are my favorite, as there was no one with me to cringe.
When I walked in to see Bob the day I got back, he said, "Well, where have you been?" I about fell over! Was he just greeting me as a figure of speech, or did he actually miss having me come, and know I had been gone? I told him I had been to see the grandkids, but there the interaction ended.
This blog will be Part I of the highlights from a lecture I heard at The Piper by Connie Michaelis, who is Lifestyle Consultant at The Piper. Part II will be my next blog, and will cover the options that are available. It is so important to start planning ahead and not be the proverbial ostrich that sticks its head in the sand, and denies that lifestyle changes must necessarily take place as we age. So saying, the best laid plans of mice and men oft go awry, and one needs to be flexible to adapt to the change--not easy for an older person.
I have been taking my 86 year old friend Arlene Magruder around to see different facilities just to get a feel for what is out there, and hopefully that can help in the decision making process. It is so important to get ahead of emergencies, and have strategies in place, so you won't be unprepared or surprised.
Your home is your happy place; a place of safety and security. Connie says belongings aren't what define you as a person. After much contemplation on that statement, I respectfully disagree. Our possessions are the fabric of our lives. Is this who I am? No, this is who I was. Yes, I am something (somebody) else today. But we are in the prison of our ribbons, Connie says. Yes I am! I have one wall lined with photos I took and entered in the SMMC photo contest and there are ribbons hanging next to them!
The trip to the South was a little emotional. A friend from high school days was in the process of downsizing. She cherished a dining room set that her grandmother had in Italy, yet in the downsize there was no place for it, and she had to give it up. The set had made its way to this country and I have participated in gatherings at that table. (The bright spot is that I was given a wonderful tablecloth and napkin set that I have already used and will cherish.)
It made me think about my own downsizing. I will admit, I enjoy being in our house surrounded by all the souvenirs we collected in our travels. No one else will value those like I do. And how could I just throw my childhood dolls and china tea set that is in the basement in the trash? I still have my dollhouse furniture that went to Africa and back when my parents were missionaries, along with the forenamed dolls and tea set. I never had a dollhouse as there was never room for one, and it wouldn't have survived all the moves. So when we moved into our current home, I bought a dollhouse for the furniture, and the grandkids have fun playing with it. So I have decided to stay in our home as long as possible, and then when the time comes to downsize, have an estate sale, and not be present when it is going on. Hopefully I will be on a trip somewhere! And in the meantime, I will enjoy my possessions!
Yes, I realize that the time will come when the priority is to take care of just yourself and let go of collections. There are several men I know that have model train collections, and all the joy and work they have put into them are very important. One new resident at The Piper has 200 engines. They are home with his wife, but he has pictures in his room of his layout (that even included an outdoor layout that covered his entire yard.) Bob collected stamps and had collected them since 1970. Someone at the General Conference told him the collection would greatly increase in value and be worth a lot of money someday. (Beware of taking someone's word at the GC as the gospel!) He saved sheets of stamps, plate blocks, first day covers, all neatly stored and cataloged. They took up a lot of room. So recently I decided the collection was one thing I could downsize and hopefully sell when I could do it at my leisure. Was I ever shocked! I checked with local companies, and buyers and sellers as far away as Chicago, and they all told me the same thing. They aren't worth the paper they are printed on anymore. They said to just start using them for postage, you will get more worth out of them. I can never use them up in this lifetime, especially when there is not much use for snail mail anymore! The albums they are in are worth more than the stamps! Here I was hoping to get at least a month's rent at The Piper for them! Silly me! But that is the hardest thing I have done, is to start tearing those stamps at the perforations (and licking them!) and using them as postage. A package to a grandchild recently had the whole top of the package covered in stamps. It was colorful anyway! I am just glad Bob doesn't know about this happening, as he was so proud of his collection.
Bob also collected clocks. They are all over our home. Most of them had to be wound, and I forbade him to wind them, as they all would chime at different times and different volumes, which was NOT good for a day sleeper. Or night sleeper for that matter! That brings to mind this poem:
The clock of life is wound but once, and no man has the power to tell just when the hands will stop,
at late or early hour.
Now is the only time you own. Live, love, toil with a will, place no faith in time.
For the clock may soon be still.
--Robert H. Smith
When that day comes, collections and "stuff" will be meaningless. So in the meantime--enjoy!
Betty
I traveled to the beautiful state of Tennessee to be with the grandkids while they were on Spring break. It was a breath of fresh air (if you could remove all the pollen) from the hiccuping that we are experiencing here as Miss Spring tries to make her appearance. The redbuds and dogwoods were blooming, and I sang at full voice to CDs that are my favorite, as there was no one with me to cringe.
When I walked in to see Bob the day I got back, he said, "Well, where have you been?" I about fell over! Was he just greeting me as a figure of speech, or did he actually miss having me come, and know I had been gone? I told him I had been to see the grandkids, but there the interaction ended.
This blog will be Part I of the highlights from a lecture I heard at The Piper by Connie Michaelis, who is Lifestyle Consultant at The Piper. Part II will be my next blog, and will cover the options that are available. It is so important to start planning ahead and not be the proverbial ostrich that sticks its head in the sand, and denies that lifestyle changes must necessarily take place as we age. So saying, the best laid plans of mice and men oft go awry, and one needs to be flexible to adapt to the change--not easy for an older person.
I have been taking my 86 year old friend Arlene Magruder around to see different facilities just to get a feel for what is out there, and hopefully that can help in the decision making process. It is so important to get ahead of emergencies, and have strategies in place, so you won't be unprepared or surprised.
Your home is your happy place; a place of safety and security. Connie says belongings aren't what define you as a person. After much contemplation on that statement, I respectfully disagree. Our possessions are the fabric of our lives. Is this who I am? No, this is who I was. Yes, I am something (somebody) else today. But we are in the prison of our ribbons, Connie says. Yes I am! I have one wall lined with photos I took and entered in the SMMC photo contest and there are ribbons hanging next to them!
The trip to the South was a little emotional. A friend from high school days was in the process of downsizing. She cherished a dining room set that her grandmother had in Italy, yet in the downsize there was no place for it, and she had to give it up. The set had made its way to this country and I have participated in gatherings at that table. (The bright spot is that I was given a wonderful tablecloth and napkin set that I have already used and will cherish.)
It made me think about my own downsizing. I will admit, I enjoy being in our house surrounded by all the souvenirs we collected in our travels. No one else will value those like I do. And how could I just throw my childhood dolls and china tea set that is in the basement in the trash? I still have my dollhouse furniture that went to Africa and back when my parents were missionaries, along with the forenamed dolls and tea set. I never had a dollhouse as there was never room for one, and it wouldn't have survived all the moves. So when we moved into our current home, I bought a dollhouse for the furniture, and the grandkids have fun playing with it. So I have decided to stay in our home as long as possible, and then when the time comes to downsize, have an estate sale, and not be present when it is going on. Hopefully I will be on a trip somewhere! And in the meantime, I will enjoy my possessions!
Yes, I realize that the time will come when the priority is to take care of just yourself and let go of collections. There are several men I know that have model train collections, and all the joy and work they have put into them are very important. One new resident at The Piper has 200 engines. They are home with his wife, but he has pictures in his room of his layout (that even included an outdoor layout that covered his entire yard.) Bob collected stamps and had collected them since 1970. Someone at the General Conference told him the collection would greatly increase in value and be worth a lot of money someday. (Beware of taking someone's word at the GC as the gospel!) He saved sheets of stamps, plate blocks, first day covers, all neatly stored and cataloged. They took up a lot of room. So recently I decided the collection was one thing I could downsize and hopefully sell when I could do it at my leisure. Was I ever shocked! I checked with local companies, and buyers and sellers as far away as Chicago, and they all told me the same thing. They aren't worth the paper they are printed on anymore. They said to just start using them for postage, you will get more worth out of them. I can never use them up in this lifetime, especially when there is not much use for snail mail anymore! The albums they are in are worth more than the stamps! Here I was hoping to get at least a month's rent at The Piper for them! Silly me! But that is the hardest thing I have done, is to start tearing those stamps at the perforations (and licking them!) and using them as postage. A package to a grandchild recently had the whole top of the package covered in stamps. It was colorful anyway! I am just glad Bob doesn't know about this happening, as he was so proud of his collection.
Bob also collected clocks. They are all over our home. Most of them had to be wound, and I forbade him to wind them, as they all would chime at different times and different volumes, which was NOT good for a day sleeper. Or night sleeper for that matter! That brings to mind this poem:
The clock of life is wound but once, and no man has the power to tell just when the hands will stop,
at late or early hour.
Now is the only time you own. Live, love, toil with a will, place no faith in time.
For the clock may soon be still.
--Robert H. Smith
When that day comes, collections and "stuff" will be meaningless. So in the meantime--enjoy!
Betty
Sunday, March 25, 2018
This has been a busy month. In spite of ominous storm warnings that came to nought, we are still marching forward to Spring--unlike many of our friends on the East coast that have had to deal with four Nor'easters! Bob's brother Steve and nephew John came in from Baltimore dodging the storms and flight delays. They stayed for a weekend, and it was so good to have them come. I was anxious to see if Bob knew who Steve was, and by any chance would he call him by name? Bob's face lit up like it does whenever anyone comes to see him, and he gave him a big smile. But was there any flicker of recognition? We couldn't see that, and he certainly didn't articulate anything. It was hard for Steve to see Bob like he is now, as the last time he saw Bob, things were just starting to be noticeable. For me, it has been such a gradual decline that it doesn't seem that different from what I see from day to day. Steve and I watched a video that had been made of Bob's 50th birthday party with all the relatives in Maryland. We laughed till we cried at some of the stories Bob was telling...
I recently went to a seminar at the Piper. They are excellent and open to the public if you see them advertised on Facebook (I share the posts). There is one this coming Tuesday at 10am and the topic is "Home sweet Home." I hope my home sweet home for awhile is the home I am living in at present, but I am going to go, and learn from it. It is good to have a few strategies in place, so you aren't blindsided when all of the sudden a crisis necessitates the move from your home under emergency conditions. The last seminar I went to there Caroline Dawson from Agewise Advocacy and Consulting was the speaker. Here are some of the pointers I took away from her excellent presentation about caring for the loved one with dementia.
Put anxiety behind you. Take behavior out of the equation and look at it as an expression of need--physical or emotional.
Take a deep breath before you engage. The filters are gone from your loved one, and they are experiencing sadness, anxiety and fear. They have reason to be afraid.
What are they trying to tell me? It is different from aggression, and they just need to feel like they have control.
Be open--get down to their level and extend your hand. Sit in front of them in a chair and encourage them to engage with you before touching them. Sit where they can see and hear you.
Do with what you have, not what you haven't got. They are doing the best they can, and need to control their environment.
Greet before you treat. Take a deep breath. Make things on their terms. Watch out for the "shoulds" and shouldn'ts. (He should do this, he should do that)
A lot of times they are overwhelmed. Reduce their stimulation.
Validation--"I see your tears. Align with them with empathy. It's OK to be sad.
Do more of what works and less of what doesn't.
Too many choices and options create stress. It is unfair to them if they are incapacitated or decking in cognition to make them make a decision that is overwhelming to them.
I just wish all caregivers in the home and in care homes could have attended that seminar. I know that some things are just flowery words and at some point however, the rubber meets the road. I want to applaud all caregivers, as it takes so much patience, and burnout is so common.
I will close with this poem "I Understand"
How difficult it must be for you.
To watch me become less of the person you once knew
My body is here, but my mind is not.
The things we once shared, I may have forgot.
This will be our longest goodbye.
For the mind of the person you love is slowing and will die.
I will not act or behave like the person I once was.
But please remember, it's not something I have control of
I'm sorry for this burden I put on you.
There will be some rough days, with teary eyes and hearts of blue.
But let the love of so many years carry us the rest of the way
Because this is not forever and our souls will meet again one day.
---Joy Rembert
I am heading to Tennessee to see the grandkids for Spring break. Three of them are teenagers, which should be another whole blog!
Happy Easter to you!
Betty
I recently went to a seminar at the Piper. They are excellent and open to the public if you see them advertised on Facebook (I share the posts). There is one this coming Tuesday at 10am and the topic is "Home sweet Home." I hope my home sweet home for awhile is the home I am living in at present, but I am going to go, and learn from it. It is good to have a few strategies in place, so you aren't blindsided when all of the sudden a crisis necessitates the move from your home under emergency conditions. The last seminar I went to there Caroline Dawson from Agewise Advocacy and Consulting was the speaker. Here are some of the pointers I took away from her excellent presentation about caring for the loved one with dementia.
Put anxiety behind you. Take behavior out of the equation and look at it as an expression of need--physical or emotional.
Take a deep breath before you engage. The filters are gone from your loved one, and they are experiencing sadness, anxiety and fear. They have reason to be afraid.
What are they trying to tell me? It is different from aggression, and they just need to feel like they have control.
Be open--get down to their level and extend your hand. Sit in front of them in a chair and encourage them to engage with you before touching them. Sit where they can see and hear you.
Do with what you have, not what you haven't got. They are doing the best they can, and need to control their environment.
Greet before you treat. Take a deep breath. Make things on their terms. Watch out for the "shoulds" and shouldn'ts. (He should do this, he should do that)
A lot of times they are overwhelmed. Reduce their stimulation.
Validation--"I see your tears. Align with them with empathy. It's OK to be sad.
Do more of what works and less of what doesn't.
Too many choices and options create stress. It is unfair to them if they are incapacitated or decking in cognition to make them make a decision that is overwhelming to them.
I just wish all caregivers in the home and in care homes could have attended that seminar. I know that some things are just flowery words and at some point however, the rubber meets the road. I want to applaud all caregivers, as it takes so much patience, and burnout is so common.
I will close with this poem "I Understand"
How difficult it must be for you.
To watch me become less of the person you once knew
My body is here, but my mind is not.
The things we once shared, I may have forgot.
This will be our longest goodbye.
For the mind of the person you love is slowing and will die.
I will not act or behave like the person I once was.
But please remember, it's not something I have control of
I'm sorry for this burden I put on you.
There will be some rough days, with teary eyes and hearts of blue.
But let the love of so many years carry us the rest of the way
Because this is not forever and our souls will meet again one day.
---Joy Rembert
I am heading to Tennessee to see the grandkids for Spring break. Three of them are teenagers, which should be another whole blog!
Happy Easter to you!
Betty
Monday, February 26, 2018
Before I get to the heart of this blog, I would like to clarify something from my last blog. My decision now would be to give Bob oral antibiotics if he needed them for an infection. On the papers for our living wills where it asks if we want antibiotics, I put a big question mark. If Bob was worse, and I felt he was near death, I would opt not to give antibiotics. But right now he is in a grey area, in limbo so to speak. He is still enjoying his food, and is very responsive to me and other people, although he cannot say who we are or carry on any conversation. (For those of you who knew Bob, this is significant...) Thanks for asking about this, Duane Hallock.
He is becoming more immobile, although he fell out of bed the other night. I don't know how that could happen as the hospice bed has big foam bolsters all along the edges. He was not injured, as the bed also lowers to the floor. Hospice has brought in a lift as he is becoming very hard to transfer, and I am afraid someone will hurt their back. It is not a Hoyer lift that I am used to and is not ideal either, but this one uses a jacket that is put on him and then the lift hooks on to hooks on the jacket. I am afraid this is not being used as much as it should be, as it is quite cumbersome, and time consuming. The CRNAs at The Piper were talking to the hospice bath aide the other day when I was there. The lift is manual and they had gotten Bob stuck up in the air and couldn't get him down. They said they were laughing and Bob was laughing! He must have thought he was on a carnival ride. They have figured out you have to manually push it down as well!
I would like to address in this blog something I am very concerned about. I cannot worry about it, as there is nothing I can do about it, so it wouldn't do any good to worry. I don't think I am a "voice crying in the wilderness" either. I am speaking from what I observe in this area; I welcome comments on my blog if you observe something different in your area. THERE IS A SHORTAGE OF HEALTHCARE WORKERS OUT THERE FOLKS!! The new facilities that are opening up in this area are HUGE, and there is a new one opening all the time. I visited someone in one the other day, and they cannot open all the wings, as there is no staff to do it. The turnover in all facilities is phenomenal; when another facility opens up and the pay is 50 cents more an hour, everyone flocks there. Facilities, including hospitals, use agency nurses and pay them much more than their regular staff, which is demoralizing to the loyal employees. And this is nothing new, but the problem seems to be increasing. Some nurses are traveling nurses--they travel to warmer climes like Florida, California, and Arizona in the winter and like snowbirds fly home in the summer, and still work for the travel agency and get their housing (in their own home) paid for. But I have observed the downside to this. One traveling nurse I knew traveled to Texas. She was put in charge the first night on a unit as she was the only one that could speak English and there had to be someone there to answer the phone if a doctor called. That is really scary; they don't know the doctors' preferences or hospital policies. A lot of places are staffed with nurses from foreign countries. When I worked at a hospital near Washington D.C., a lot of the staff was from India or the Philippines. They were hard working, dedicated and competent nurses, but could only work as nurse techs, because they didn't speak English well enough to pass boards. Another business that is booming is hospice. There are new ones opening at a dizzying pace. They are funded by Medicare, and the government is going to wake up to that soon. I also want to mention VA hospitals. Our veterans deserve the best they can get, but I am afraid that is not the case in a lot of places, with the news of the long waiting lists to get treatment. In our area, the reports vary about the care. I think it is pretty good here, and for that I am thankful. I know several wonderful ED doctors from Shawnee Mission Medical Center left to go to the VA hospital where they could work for 20 more years and retire with a great pension. Can you blame them?! I am so thankful for the healthcare workers that are willing to do that kind of work that is so demanding both physically and emotionally.
Now people that are living in these facilities are wondering if they are going to get the tax breaks for living in them that they have in the past. There are several continuum of care facilities that you get a tax break when you live there as you pay for your health care to the end of life in the package deal. I think I can deduct Bob's care this year, but we will have to wait and see what happens in the future.
Bottom line, I would like to die in my sleep, so I would not have to go to ANY facility. But as we all know, we don't get a choice!
I have been making pillows for friends who have lost their spouses from the shirts and sweaters of their loved ones. As I see them grieve, I grieve with them. It reminds me of the grief cycle of Elisabeth Kubler-Ross. The five stages are denial, anger, bargaining, depression and acceptance. But they are not stops on some linear timeline in grief. I would much prefer to leave you with this quote:
"Grief never ends. But, it changes. It's a passage, not a place to stay. Grief is not a sign of weakness, nor lack of faith...It's the price of love." from Random Thoughts n' Lotsa Coffee with J.V. Manning. Thank you Jackie Moranville for sharing the quote.
May your cup of coffee (or tea) be bottomless and your tax return be more than you expected,
Until next time,
Betty
He is becoming more immobile, although he fell out of bed the other night. I don't know how that could happen as the hospice bed has big foam bolsters all along the edges. He was not injured, as the bed also lowers to the floor. Hospice has brought in a lift as he is becoming very hard to transfer, and I am afraid someone will hurt their back. It is not a Hoyer lift that I am used to and is not ideal either, but this one uses a jacket that is put on him and then the lift hooks on to hooks on the jacket. I am afraid this is not being used as much as it should be, as it is quite cumbersome, and time consuming. The CRNAs at The Piper were talking to the hospice bath aide the other day when I was there. The lift is manual and they had gotten Bob stuck up in the air and couldn't get him down. They said they were laughing and Bob was laughing! He must have thought he was on a carnival ride. They have figured out you have to manually push it down as well!
I would like to address in this blog something I am very concerned about. I cannot worry about it, as there is nothing I can do about it, so it wouldn't do any good to worry. I don't think I am a "voice crying in the wilderness" either. I am speaking from what I observe in this area; I welcome comments on my blog if you observe something different in your area. THERE IS A SHORTAGE OF HEALTHCARE WORKERS OUT THERE FOLKS!! The new facilities that are opening up in this area are HUGE, and there is a new one opening all the time. I visited someone in one the other day, and they cannot open all the wings, as there is no staff to do it. The turnover in all facilities is phenomenal; when another facility opens up and the pay is 50 cents more an hour, everyone flocks there. Facilities, including hospitals, use agency nurses and pay them much more than their regular staff, which is demoralizing to the loyal employees. And this is nothing new, but the problem seems to be increasing. Some nurses are traveling nurses--they travel to warmer climes like Florida, California, and Arizona in the winter and like snowbirds fly home in the summer, and still work for the travel agency and get their housing (in their own home) paid for. But I have observed the downside to this. One traveling nurse I knew traveled to Texas. She was put in charge the first night on a unit as she was the only one that could speak English and there had to be someone there to answer the phone if a doctor called. That is really scary; they don't know the doctors' preferences or hospital policies. A lot of places are staffed with nurses from foreign countries. When I worked at a hospital near Washington D.C., a lot of the staff was from India or the Philippines. They were hard working, dedicated and competent nurses, but could only work as nurse techs, because they didn't speak English well enough to pass boards. Another business that is booming is hospice. There are new ones opening at a dizzying pace. They are funded by Medicare, and the government is going to wake up to that soon. I also want to mention VA hospitals. Our veterans deserve the best they can get, but I am afraid that is not the case in a lot of places, with the news of the long waiting lists to get treatment. In our area, the reports vary about the care. I think it is pretty good here, and for that I am thankful. I know several wonderful ED doctors from Shawnee Mission Medical Center left to go to the VA hospital where they could work for 20 more years and retire with a great pension. Can you blame them?! I am so thankful for the healthcare workers that are willing to do that kind of work that is so demanding both physically and emotionally.
Now people that are living in these facilities are wondering if they are going to get the tax breaks for living in them that they have in the past. There are several continuum of care facilities that you get a tax break when you live there as you pay for your health care to the end of life in the package deal. I think I can deduct Bob's care this year, but we will have to wait and see what happens in the future.
Bottom line, I would like to die in my sleep, so I would not have to go to ANY facility. But as we all know, we don't get a choice!
I have been making pillows for friends who have lost their spouses from the shirts and sweaters of their loved ones. As I see them grieve, I grieve with them. It reminds me of the grief cycle of Elisabeth Kubler-Ross. The five stages are denial, anger, bargaining, depression and acceptance. But they are not stops on some linear timeline in grief. I would much prefer to leave you with this quote:
"Grief never ends. But, it changes. It's a passage, not a place to stay. Grief is not a sign of weakness, nor lack of faith...It's the price of love." from Random Thoughts n' Lotsa Coffee with J.V. Manning. Thank you Jackie Moranville for sharing the quote.
May your cup of coffee (or tea) be bottomless and your tax return be more than you expected,
Until next time,
Betty
Friday, February 2, 2018
Happy Groundhog day! I understand that he saw his shadow, so there will be 6 more weeks of winter. But as I saw on Facebook, he is a rodent, not a meteorologist. I intensely dislike winter and would love to go back to sleep and wake up and find that it was Spring! I am well, but trying to dodge these cold and flu germs.
Bob is doing well also. His mobility is decreasing, and hospice brought in a lift to help transfer him. I know he has the strength to stand, but when they ask him to, his brain just won't connect with his muscles to perform the function. I certainly don't want the staff to hurt their backs lifting him. So far, he hasn't had the flu. One day when I was out to see him I noticed what sounded like the beginnings of bronchitis. He was coughing, and there was audible wheezing that anyone could hear without a stethoscope. I went home and spent a sleepless night going through different scenarios. If he got worse, would I ask for antibiotics? I finally came to the conclusion that I would allow oral (p.o.) antibiotics, maybe intramuscular (IM) and certainly not intravenous (IV) as that would entail going to the hospital where the germs are even more lethal. It ended up that he recovered on his own, and I didn't have to make that decision. We discussed this at the Alzheimer's support group which happened to be right at the same time (a wonderful blessing). Another lady in the group was faced with the same decision. So saying, I am well aware that the flu could sweep through the patient population at The Piper, even though they all had flu shots, and in their compromised state, many might succumb. The decision would be made for me, as antibiotics would not help. There is a sweet resident there that I really love. She went to the hospital for pneumonia, came back, and I thought she was rallying to recover. But when I saw he yesterday, she was obviously declining, and it breaks my heart. I know hospice would have helped walk and talk me through it and be there for me if it happens again, so that is comforting to know. The timing might weigh in on the decision, but is there ever a good time?
My daughter sent the following to me, and I hope you will read it carefully, and maybe it will help you in difficult choices you may have to make someday. It is written by Kimberly Callinan, who is chief program officer of Compassion and Choices, the nation's largest end-of-life choice advocacy organization. Also by Brad Stuart who has been an internal medicine, palliative care and hospice physician for almost 40 years. They wrote this for American Forum.
5 questions to ask about end-of-life care:
By 2030, and estimated 72 million American, one-fifth of the U.S. population, will by 65 or older, according to Kaiser Health News. Yet while three out of four doctors believe it's their responsibility to talk with patient about their end-of-life care goals, only one out of seven actually held these conversations, according to a recent survey by the John A. Hartford Foundation, California Health Care Foundation and Cambia Foundation.
The reason? Nearly half of doctors said they don't know what to say, and less than a third are trained to talk with patients and their families about the end of life. When doctors don't know how to balance their patients' quality of life with its length, it's only too easy to resort to tests and treatments. As a result, many people spend their final days shuttling in and out of the hospital instead of enjoying all the precious moments they can.
Patients can change this dynamic just by asking the right questions. This gives their doctors permission to talk about the benefits and risks of treatment and outline all care options including hospice. Only then can doctor and patient make treatment decisions together to match the patient's personal goals, priorities and values.
These questions cover five major areas:
MY CONDITION: Is my disease curable? Will it shorten my life? By how much? What's likely to happen as it progresses?
BENEFITS OF TREATMENT: How will this treatment help my condition? Will I be cured or will the disease come back? What are the odds either way? Will treatment return me to normal function?
BURDENS OF TREATMENT: Does this treatment have side effects? What will my quality of life be like during treatment? What activities will I have to give up? How much time will I spend in the hospital or going to doctors' appointments?
OTHER TREATMENT OPTIONS: What are my other treatment options? What happens if we focus on slowing the disease without going for a cure? Or focus on comfort rather than fighting the disease? Or do nothing? What about hospice?
DOCTORS PERSONAL VIEW: A 2014 study by physicians affiliated with the Stanford University School of Medicine, Stanford Hospital and Clinics, and Veterans Affair Palo Alto Health Care System showed that almost 90 percent of doctors would choose to forgo aggressive treatment at the end of their own lives. Most would want to die gently with few interventions. So patients should also ask their doctors: "What would you do if you had my diagnosis and prognosis?"
By asking these questions early in the course of illness, patients can empower themselves to write their own end-of-life story and have more control over their last years, months and days of life.
*****************************
I wish families would read this as well as the patients. People's decisions will be different, depending on their age, and certainly dependent on the ages of their children. I have seen patients opt for treatment to get to a life celebration, such as a wedding, but then discontinue treatment. I wish that families would allow their loved one to make the decision, and then respect that decision. End of life often brings on family conflicts that have been buried for years and should certainly not be brought up at this time. They spend precious time fighting instead of loving. Focus on the memories, the good times, and give yourselves that gift.
The other day I was cleaning out a drawer. I came across a note on an index card from Bob that he had written and put on the counter for me to read when I came home from working the night shift. I am sure the house was spotless, as he would clean the house thoroughly before going to work. It read:
Good Morning Betty. I love you. Have a good rest. Love, Rob xxxooo
That is the man I know and love! I am so glad he is content now, and looks like he is at peace.
Betty
Bob is doing well also. His mobility is decreasing, and hospice brought in a lift to help transfer him. I know he has the strength to stand, but when they ask him to, his brain just won't connect with his muscles to perform the function. I certainly don't want the staff to hurt their backs lifting him. So far, he hasn't had the flu. One day when I was out to see him I noticed what sounded like the beginnings of bronchitis. He was coughing, and there was audible wheezing that anyone could hear without a stethoscope. I went home and spent a sleepless night going through different scenarios. If he got worse, would I ask for antibiotics? I finally came to the conclusion that I would allow oral (p.o.) antibiotics, maybe intramuscular (IM) and certainly not intravenous (IV) as that would entail going to the hospital where the germs are even more lethal. It ended up that he recovered on his own, and I didn't have to make that decision. We discussed this at the Alzheimer's support group which happened to be right at the same time (a wonderful blessing). Another lady in the group was faced with the same decision. So saying, I am well aware that the flu could sweep through the patient population at The Piper, even though they all had flu shots, and in their compromised state, many might succumb. The decision would be made for me, as antibiotics would not help. There is a sweet resident there that I really love. She went to the hospital for pneumonia, came back, and I thought she was rallying to recover. But when I saw he yesterday, she was obviously declining, and it breaks my heart. I know hospice would have helped walk and talk me through it and be there for me if it happens again, so that is comforting to know. The timing might weigh in on the decision, but is there ever a good time?
My daughter sent the following to me, and I hope you will read it carefully, and maybe it will help you in difficult choices you may have to make someday. It is written by Kimberly Callinan, who is chief program officer of Compassion and Choices, the nation's largest end-of-life choice advocacy organization. Also by Brad Stuart who has been an internal medicine, palliative care and hospice physician for almost 40 years. They wrote this for American Forum.
5 questions to ask about end-of-life care:
By 2030, and estimated 72 million American, one-fifth of the U.S. population, will by 65 or older, according to Kaiser Health News. Yet while three out of four doctors believe it's their responsibility to talk with patient about their end-of-life care goals, only one out of seven actually held these conversations, according to a recent survey by the John A. Hartford Foundation, California Health Care Foundation and Cambia Foundation.
The reason? Nearly half of doctors said they don't know what to say, and less than a third are trained to talk with patients and their families about the end of life. When doctors don't know how to balance their patients' quality of life with its length, it's only too easy to resort to tests and treatments. As a result, many people spend their final days shuttling in and out of the hospital instead of enjoying all the precious moments they can.
Patients can change this dynamic just by asking the right questions. This gives their doctors permission to talk about the benefits and risks of treatment and outline all care options including hospice. Only then can doctor and patient make treatment decisions together to match the patient's personal goals, priorities and values.
These questions cover five major areas:
MY CONDITION: Is my disease curable? Will it shorten my life? By how much? What's likely to happen as it progresses?
BENEFITS OF TREATMENT: How will this treatment help my condition? Will I be cured or will the disease come back? What are the odds either way? Will treatment return me to normal function?
BURDENS OF TREATMENT: Does this treatment have side effects? What will my quality of life be like during treatment? What activities will I have to give up? How much time will I spend in the hospital or going to doctors' appointments?
OTHER TREATMENT OPTIONS: What are my other treatment options? What happens if we focus on slowing the disease without going for a cure? Or focus on comfort rather than fighting the disease? Or do nothing? What about hospice?
DOCTORS PERSONAL VIEW: A 2014 study by physicians affiliated with the Stanford University School of Medicine, Stanford Hospital and Clinics, and Veterans Affair Palo Alto Health Care System showed that almost 90 percent of doctors would choose to forgo aggressive treatment at the end of their own lives. Most would want to die gently with few interventions. So patients should also ask their doctors: "What would you do if you had my diagnosis and prognosis?"
By asking these questions early in the course of illness, patients can empower themselves to write their own end-of-life story and have more control over their last years, months and days of life.
*****************************
I wish families would read this as well as the patients. People's decisions will be different, depending on their age, and certainly dependent on the ages of their children. I have seen patients opt for treatment to get to a life celebration, such as a wedding, but then discontinue treatment. I wish that families would allow their loved one to make the decision, and then respect that decision. End of life often brings on family conflicts that have been buried for years and should certainly not be brought up at this time. They spend precious time fighting instead of loving. Focus on the memories, the good times, and give yourselves that gift.
The other day I was cleaning out a drawer. I came across a note on an index card from Bob that he had written and put on the counter for me to read when I came home from working the night shift. I am sure the house was spotless, as he would clean the house thoroughly before going to work. It read:
Good Morning Betty. I love you. Have a good rest. Love, Rob xxxooo
That is the man I know and love! I am so glad he is content now, and looks like he is at peace.
Betty
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