I just returned from a cruise a week ago today. From warm tropical isles to the deep freeze of the Midwest! I am going to take a break and digress from "Journey through Alzheimer's" on this post and title this one "Adventures on the Love Boat." The ship we sailed on was the Pacific Princess, the smallest now of the Princess fleet, but it was the ship that the TV series "The Love Boat" was filmed on. It was the perfect size, about 650 passengers, instead of the megaships of today. I was booked on this very cruise 3 years ago with Bob and some dear friends, Harry and Gail Janke, and their daughter Heather. But Bob got too bad to travel from the time we booked until the time we sailed, so we had to cancel. This year Jankes were going again, so I asked if I could try this again, and they said, "Sure, come along!" But 2 days before the cruise Heather got sick and they had to cancel. I had already decided if something happened I would go ahead and go by myself, so that is what I did! So saying, I am going to introduce you to some of my fellow travelers that I met on the Love Boat.
I was assigned to a table for 8. The seniors at the table were a couple aged 99 (she celebrated her birthday on the ship) and her husband aged 98 (she said she was a cougar!) They were just as "with it" as any of the rest of us, and needed no mobility devices. Another couple lives in Vancouver, B.C. She was from Finland and he was from Denmark, and they met dancing in Vancouver. Then there was a dapper gentleman from New Jersey complete with the identifying accent that dressed in a suit almost every night for dinner. His daughter kept his homefires burning while he cruised the world, even having been on the Queen Mary. Last, but not least, was a couple from Atlanta, who also cruised a lot. He had worked for AT&T and she had been a church secretary. Charlie kept playing pranks on the room stewards and waiters, so we had a lively group. We were always the last table to leave the dining room as we bonded together the first evening!
Our table (except for the elder couple who went to bed) always went to the excellent evening shows. At one of the shows the performer was a lady who played the piano suberbly. During one love song that she played she asked the gentlemen in the audience to reach over and hold their lady's hand. I was amazing as I surreptitiously looked around to see men still sitting with their arms folded and their legs crossed. Bob would have grabbed my hand immediately and squeezed it hard! After the show, the folks at our table usually gravitated upstairs to the Pacific Lounge. There the ship staff sponsored an hour of games etc. that were a lot of fun. This particular night it was karaoke night. I was still thinking about what had happened during the show with the pianist. So believe it or not, and I still can't believe it myself, I got up to sing karaoke! I was going to sing an Elvis song, "Have I told you lately that I love you", as it is a favorite of Bob and mine. But they didn't have it on the playlist, so we agreed on "Peace in the Valley." I enlisted the help of another man singer who had a beautiful voice who was going next to sing with me. But first I made a little speech. I told the smaller audience there about what I had observed at the show. I told them I was supposed to take this cruise with the love of my life 3 years ago, but that his Alzheimer's had gotten too bad, and we had to cancel. I told them he would have loved this cruise, and would have gotten out and directed traffic going through the Panama Canal! So I told them, please don't wait to hold your lover's hand and tell them you love them, as you never know the future, and some day it might be too late. One of the tablemates jumped up and hugged me when we were finished the song, which certainly didn't rival the other singers that participated!
Then there were the 2 ladies I sat with at breakfast one morning. One was a retired nurse, 87 years old, and she was traveling with her caregiver of many years. She was in the last stages of kidney disease, and she was choosing not to go on dialysis. So this would be her last cruise. Of course she was diabetic as well, but very mobile and independent. But her caregiver said whenever she wasn't looking, she would sneak cans of non-diet pop. Good for her!
I met so many wonderful people, but the last couple I will tell you about was a couple that was always dancing, whenever and at whatever venue they found to dance. He was from Columbia, and she was from South Korea, and they met dancing in San Francisco, where they now live. She had the most gorgeous dresses, and they were always so filmy, so that it looked like she was floating across the dance floor. Everyone how the ship talked about how beautifully they danced together--it was a show in itself, watching them. I always spoke to her and called her "beautiful" and she would just beam. I got better acquainted with them on a land tour. He had even taken a $2000 massage therapy class as she has back problems and he could rub her back when she was in pain. At breakfast the last morning, I saw them sitting alone, and asked if I could join them. Immediately I saw it was a mistake. Her eyes were red from crying, and when her husband left to go to the buffet again, she told me "next time I am going to take a cruise alone like you are doing." When he came back to the table, he put his hand on her shoulder and she said "get away from me." So my bubble of their fairytale romance was burst, and I only hope they can work it out. Life is not all a bowl of cherries, is it?
I went to see Bob the day after I got home. I was still feeling like I was rockin' and rollin' on the ship like some do after a cruise (something to do with the inner ear!) The housemother at The Piper told me a story that Bob was sitting at the dinner table with 2 other men, and the other men got to arguing about something, which I always smile at, because it makes no sense, and neither of them know what they are talking about. But this particular night Bob had had enough and he yelled "SHUT UP!" That tickled my funny bone, especially since Bob does not make sense when he talks either, and he doesn't talk much now, and also it is so uncharacteristic of him! But that came out loud and clear! I am not sure he knew me, but we held hands and I sang karaoke to him. It is a song he always requested "You are my sunshine."
Hang in there folks through this winter when the sun isn't shining! I have cruise memories to keep me warm!
Betty
Sunday, January 27, 2019
Tuesday, December 4, 2018
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
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
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
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