This will not be a very long post. For those of you who follow me on Facebook, you will know that I have 10 year old granddaughter Libby with me this summer. She came May 16, and will stay until the end of July. We are very busy and having a great time. It is certainly a different summer, as we will not be going to most of the places we usually frequent. Our neighborhood swimming pool is open, but I don't feel like I want to do that so she and a friend have been swimming in our neighborhood lake which is spring fed, so it is very clear and beautiful. I am so glad it is summer and we can get out of the house, or it would be much harder to find things to do. But reading books and playing games is also becoming a favorite thing to do. We have been reading an excellent series of children's books by Kenneth Thomasma, who has done his research well. They are historical novels about the Native American tribes and their people. The children in the stories seem to come alive. What the Native American people had to endure and the abuse they suffered to me is comparable to what African American people have gone through and are going through. So it is also an educational summer.
One difference is that we cannot go see Bob like we usually do. I doubt Libby will be able to hug or even to touch Bob this summer. I am so thankful that Hillside Village is DeSoto is sticking to its strict visitor policies however as they remain COVID free--both the residents and the staff. We have had one window visit with Bob and have another one scheduled for next week. I know Bob knew Libby as when he saw her, he started crying. They were Facetiming at the same time, so we could talk to him. I am so thankful that the facility Facetimes with us every day. It is so reassuring to be able to see him. He yelled "Hello" the other day when he saw me, but other than that he doesn't talk. He is looking really good and gaining weight. One of the staff gave him a haircut as no stylists are allowed in yet, and although it was shorter than it has ever been, it looked better than the bushy look!
He has had two seizures, and the staff calls me, but the next day he seems to be nicely recovered from them.
He was taken off hospice last Friday. He didn't meet any criteria to remain on hospice! He had been
on hospice for 3 years. I used to worry a lot about what would happen if he went off hospice, but now that Bob is at Hillside Village, I am at peace. They have all the staff and equipment they need to shower him, feed him, and move him. The only equipment I have to provide is the fancy Broda wheelchair, and I am renting that. The facility furnishes all the other supplies and equipment. I still am amazed when I think of it how God worked it out for Bob to get to Hillside Village before all this craziness happened. How could any of us have seen this coming?
I will end with the words of a song written by Annie Johnson Flint:
"God has not promised, skies always blue, Flower-strewn pathways all our lives though;
God has not promised sun without rain, joy without sorrow, peace without pain.
But God has promised strength for the day, rest for the labor, light for the way,
Grace for the trials, help from above, unfailing sympathy, undying love."
So as we go on into this uncharted territory, we can only take one day at a time. We just have to
know there is a faithful, never-changing God in control.
I wish you peace.
Betty
Friday, June 19, 2020
Saturday, April 25, 2020
We are still in the midst of the pandemic--only one of the storms that has struck during this Alzheimer's journey. But I am so thankful that Bob remains in a safe harbor to weather this out. The facility has no COVID patients. They sent one out to be tested, but the result was negative. I am sure it is because they were proactive in shutting down, and I am so thankful for that, and that God saw to it that Bob was where he needed to be during this time. I had a scheduled care plan conference with the facility last week, and Bob is still gaining weight. They Facetime with me every day so I can see him and he looks good. One day I was talking a mile a minute to him and telling him everything I am doing, and he looked straight at the screen and said "Blah, blah, blah!" That was a shock because he rarely says anything now--can you imagine? The caregiver and I both broke out in laughter! I am just so thankful as well that I don't think the passage of time means anything to him and he doesn't realize I am not coming. That would break my heart. I think the facility will be one of the last things to open up again and I am fine with that. It is such a vulnerable population and I fear that a "second wave" would be a real possibility if things are opened too soon. At the same time, I feel so sad for the people that need to return to work to just pay the rent and buy food. And for the small businesses owners whose dreams have been shattered and probably will never reopen. I cannot imagine what that must be like.
I have pared down the slides to a manageable number and am quite proud of that. Now I am starting on the file cabinets in the basement. I have come across things from my grade school days, and even letters from when we lived in Africa. I had a file with just different programs we put on. One was from our high school days; we did it for speech class. Bob was a young shopkeeper in a cheese store and I was an old lady customer who was deaf as a doorknob. He kept asking me what kind of cheese I wanted, and I would respond with "Yes, it is a lovely breeze" and "Oh, you have to sneeze" and other dumb things like that. He finally came to the end of his rope and was yelling "Cheese! I said Cheese!" at me when the owner came in and asked what was going on. He told the owner how dumb I was, and the owner came over to me and put his arm around me and said, "But you know the customer is always right." Bob fainted. This became more truth than fiction in later years as our hearing mutually decreased. And we would look at each other and laugh and say "Cheese!" Next, I am going to start on the 60 years and 2 full file drawers of birthday, anniversary, Valentine etc cards. That will be more difficult, but again, each one will spark a wonderful memory.
I am going to end with a devotional by Max Lucado. It seems especially appropriate right now with the journey we are all on together.
"For some of you, the journey has been long. Very long and stormy. In no way do I wish to minimize the difficulties that you have had to face along the way. Some of you have shouldered burdens that few of us could every carry. You have bid farewell to life-long partners. You have been robbed of life-long dreams. You have been given bodies that can't sustain your spirit. You have bills that outnumber the paychecks and challenges that outweigh the strength.
And you are tired.
It's hard for you to see the City in the midst of the storms. The desire to pull over to the side of the road and get out entices you. You want to go on, but some days the road seems so long.
Let me encourage you....God never said that the journey would be easy, but He did say that the arrival would be worthwhile.
What we see will last only a short time, but what we cannot see will last forever. I Cor. 4:18"
Hang on, my friend. Weeping may endure for a night, but joy comes in the morning.
Love and virtual hugs to you all,
Betty
I have pared down the slides to a manageable number and am quite proud of that. Now I am starting on the file cabinets in the basement. I have come across things from my grade school days, and even letters from when we lived in Africa. I had a file with just different programs we put on. One was from our high school days; we did it for speech class. Bob was a young shopkeeper in a cheese store and I was an old lady customer who was deaf as a doorknob. He kept asking me what kind of cheese I wanted, and I would respond with "Yes, it is a lovely breeze" and "Oh, you have to sneeze" and other dumb things like that. He finally came to the end of his rope and was yelling "Cheese! I said Cheese!" at me when the owner came in and asked what was going on. He told the owner how dumb I was, and the owner came over to me and put his arm around me and said, "But you know the customer is always right." Bob fainted. This became more truth than fiction in later years as our hearing mutually decreased. And we would look at each other and laugh and say "Cheese!" Next, I am going to start on the 60 years and 2 full file drawers of birthday, anniversary, Valentine etc cards. That will be more difficult, but again, each one will spark a wonderful memory.
I am going to end with a devotional by Max Lucado. It seems especially appropriate right now with the journey we are all on together.
"For some of you, the journey has been long. Very long and stormy. In no way do I wish to minimize the difficulties that you have had to face along the way. Some of you have shouldered burdens that few of us could every carry. You have bid farewell to life-long partners. You have been robbed of life-long dreams. You have been given bodies that can't sustain your spirit. You have bills that outnumber the paychecks and challenges that outweigh the strength.
And you are tired.
It's hard for you to see the City in the midst of the storms. The desire to pull over to the side of the road and get out entices you. You want to go on, but some days the road seems so long.
Let me encourage you....God never said that the journey would be easy, but He did say that the arrival would be worthwhile.
What we see will last only a short time, but what we cannot see will last forever. I Cor. 4:18"
Hang on, my friend. Weeping may endure for a night, but joy comes in the morning.
Love and virtual hugs to you all,
Betty
Thursday, March 19, 2020
I am social distancing. It is a new term, and one I hope won't have to be used for very long. But, as Rabbi Yosef Kanefsky says "I'd humbly suggest that we use the term itself sparingly if at all. Language is a powerful shaper of thinking. And the very last thing we need right now, is a mindset of mutual distancing. We actually need to be thinking in the exact opposite way. Every hand that we don't shake must become a phone call that we place. Every embrace that we avoid must become a verbal expression of warmth and concern."
I have not been able to see Bob in over a week, but Hillside Village is having us Facetime, so at least
we can see each other. I am thankful that Hillside Village was proactive in protecting their residents, and not acting like they are expendable. I don't think Bob knows the difference that I am not coming, but I miss the physical touch, holding his hand. The nurses from hospice can come in, but the auxiliary personnel like bath aides are asked not to come, so that makes more work for the facility. But I am at peace, knowing they have the personnel and equipment to do the showers. Then a couple of days ago there was an update by email saying they are even doing "social distancing" in the facility. The residents that are able to feed themselves are given their food in their rooms in styrofoam containers. The ones that have to be fed (like Bob) are still taken to the dining room and fed there, but there is only one resident now per table and they take them back to their rooms one at a time so they can keep the 6 feet apart distance! I am thankful they are taking all the necessary precautions! Please say a prayer for health care workers everywhere that they will be kept safe while serving others.
Bob has gained 7 pounds since he got there January 10. I am not surprised as the portions of food are huge, and the food looks and smells very good! And I think most of the time he eats everything on his plate. I am now thinking that he is doing so well that he may be taken off hospice care. I would be frantic if he was still at the previous facility, as I was well aware that hospice filled in the gaps there. But God's timing again was perfect, and He got Bob to Hillside before all this coronavirus thing started. Who knew? Not me! And Hillside has all the equipment he needs except the special Broda wheelchair he is in. And there is no extra charge for the incontinent supplies which they furnish. Hospice furnished all the incontinent supplies before, and that was a big savings for me, and kept me from worrying that he would run out while I was on a trip. Even with hospice furnishing the supplies before, Bob would run out of supplies, as nurses all know supplies are "borrowed" from surrounding rooms when the other residents have run out. That is what makes it so nice at Hillside--supplies are not individually charged for as the owner believes you shouldn't step over a quarter to pick up a dime. Or maybe it is the other way around! Anyway, I would have been upset if I had been buying the supplies out of my own pocket. Borrowing supplies is socialism at it's best!
I went to a seminar recently and picked up this gem called "Boost your resilience". I think it is especially appropriate for the days we are living in right now.
You are allowed...
*to be sad *to feel helpless *to be tired *to be depressed *to be lonely *to be angry *to cry
*to feel out of control *to feel overwhelmed *to feel scared *to grieve *to feel like no one can relate *to wish this never happened to you--or others *to feel behind *to wonder what if?
*to long for simple things, and simple times... *to wish for more
But on the flip side...
You are allowed...
*to feel lucky *to be grateful *to feel loved *to be hopeful *to realize you are not alone
*to find joy *to realize you are stronger than you ever thought *to laugh *to be surrounded by people who care *to feel nurtured *to be inspired *to feel chosen *to be motivated *to be
filled with faith *to do what you can *to learn to ask for help *to make a difference
*to be be-YOU-tiful!
WHICH SIDE OF THE CARD ARE YOU ON TODAY?
kimbecking.com
So I challenge you to do what you can to help and support others while also doing all you can to protect yourself. Make that phone call; send someone a card. I think I am going to go through slides of all our trips, weed out the ones that are just landscapes and keep the photos of scenes that have Bob and I in them, or friends, or family. People all of a sudden seem important. It seems like an overwhelming task, but hopefully my kids will thank me someday! And I have time to do it NOW!
And I will let the pictures take me down memory lane.....
Love to all of you as we hunker down! We will get through this!
Betty
I have not been able to see Bob in over a week, but Hillside Village is having us Facetime, so at least
we can see each other. I am thankful that Hillside Village was proactive in protecting their residents, and not acting like they are expendable. I don't think Bob knows the difference that I am not coming, but I miss the physical touch, holding his hand. The nurses from hospice can come in, but the auxiliary personnel like bath aides are asked not to come, so that makes more work for the facility. But I am at peace, knowing they have the personnel and equipment to do the showers. Then a couple of days ago there was an update by email saying they are even doing "social distancing" in the facility. The residents that are able to feed themselves are given their food in their rooms in styrofoam containers. The ones that have to be fed (like Bob) are still taken to the dining room and fed there, but there is only one resident now per table and they take them back to their rooms one at a time so they can keep the 6 feet apart distance! I am thankful they are taking all the necessary precautions! Please say a prayer for health care workers everywhere that they will be kept safe while serving others.
Bob has gained 7 pounds since he got there January 10. I am not surprised as the portions of food are huge, and the food looks and smells very good! And I think most of the time he eats everything on his plate. I am now thinking that he is doing so well that he may be taken off hospice care. I would be frantic if he was still at the previous facility, as I was well aware that hospice filled in the gaps there. But God's timing again was perfect, and He got Bob to Hillside before all this coronavirus thing started. Who knew? Not me! And Hillside has all the equipment he needs except the special Broda wheelchair he is in. And there is no extra charge for the incontinent supplies which they furnish. Hospice furnished all the incontinent supplies before, and that was a big savings for me, and kept me from worrying that he would run out while I was on a trip. Even with hospice furnishing the supplies before, Bob would run out of supplies, as nurses all know supplies are "borrowed" from surrounding rooms when the other residents have run out. That is what makes it so nice at Hillside--supplies are not individually charged for as the owner believes you shouldn't step over a quarter to pick up a dime. Or maybe it is the other way around! Anyway, I would have been upset if I had been buying the supplies out of my own pocket. Borrowing supplies is socialism at it's best!
I went to a seminar recently and picked up this gem called "Boost your resilience". I think it is especially appropriate for the days we are living in right now.
You are allowed...
*to be sad *to feel helpless *to be tired *to be depressed *to be lonely *to be angry *to cry
*to feel out of control *to feel overwhelmed *to feel scared *to grieve *to feel like no one can relate *to wish this never happened to you--or others *to feel behind *to wonder what if?
*to long for simple things, and simple times... *to wish for more
But on the flip side...
You are allowed...
*to feel lucky *to be grateful *to feel loved *to be hopeful *to realize you are not alone
*to find joy *to realize you are stronger than you ever thought *to laugh *to be surrounded by people who care *to feel nurtured *to be inspired *to feel chosen *to be motivated *to be
filled with faith *to do what you can *to learn to ask for help *to make a difference
*to be be-YOU-tiful!
WHICH SIDE OF THE CARD ARE YOU ON TODAY?
kimbecking.com
So I challenge you to do what you can to help and support others while also doing all you can to protect yourself. Make that phone call; send someone a card. I think I am going to go through slides of all our trips, weed out the ones that are just landscapes and keep the photos of scenes that have Bob and I in them, or friends, or family. People all of a sudden seem important. It seems like an overwhelming task, but hopefully my kids will thank me someday! And I have time to do it NOW!
And I will let the pictures take me down memory lane.....
Love to all of you as we hunker down! We will get through this!
Betty
Friday, February 7, 2020
Bob has been at his new residence, Hillside Village, for almost a month now. Oh, and now that I have been exploring around the town of De Soto, Kansas (not Missouri!) I think I know why it is called Hillside Village. The whole town is on a hillside above the Kansas River. I love little towns, but Bob liked the big city. So it is ironic that he is now living in a little town, and I live more in a city! He is getting along so well. I am so sad that I didn't think about this before, as it had been talked about, but never acted on before. He was on the medication Resperidone for agitation. It was mentioned by the director of nursing when he first moved to The Piper that it probably should be weaned off, but then she quit, and it never was addressed again. When he was admitted to Hillside Village, immediately they asked if they could wean it off, as they didn't like their residents being on that type of medication. I readily agreed, and now it seems that Bob has become more alert, more talkative, and isn't sleeping as much. Plus he really reacts to the friendly staff.
I am going to talk about one more interaction with The Piper, and then I will forever move on from that subject. Right about the time I had told them I was moving Bob, an article was posted on their Facebook page about conflict resolution. I found it rather strange that it happened at the same time, but they assured me that an independent company took care of such. One paragraph stated that "the residents may be perfectly happy where they are, but it is the families that are not." I submit that Bob could not have told me if he was unhappy, so I had to be the advocate and use my powers of observation to perceive what was going on. Another paragraph: "It is important to move slowly so that decisions are not made from an emotional state." I had made excuses for the way things were for a long time, had made complaints, but nothing ever changed, just got progressively worse. Another statement was that they could not force the residents to shower. Yes, I agree. But when a resident is asked if they want to take a shower, they are always going to say "no". So then the staff can chart "resident refused" and move on. And they cannot be dragged in to shower. If the staff has proper dementia care training, and approach the resident the right way, maybe several times the same morning, and make a game of it, they would have better success.
I asked for an appointment with the owner of The Piper. I took 2 dear friends along, who had also observed for themselves what was going on, with the lack of staff. We all talked for over 2 hours, and the owner paid very close attention. I truly think he had no idea how bad it had become. At the end I told him that I hoped he would take what we said to heart, and make changes. He said "I will." As a sidelight, the article on Facebook on conflict resolution was taken down the next day. As I have said before, he has his job cut out for him. All these beautiful facilities are being built all over town with no one to staff them.
Let's go back at Hillside Village. They told me one day when I went out that they had put Bob on the toilet and he had had a large stool. When I voiced how happy I was to hear that, the young man said simply "It's all about dignity." I remember when my mother was in the nursing home here in town. I came in one day to check on her as I did regularly. She was crying and I asked why. She said she would ask them to put her on the bedpan. They would tell her just to go in her diaper as it was easier to clean up. Yes, it is all about dignity. And the following incident happened at the hospital where I worked. I was a team leader one night and asked my CNA to go give a patient some water as she was unable to get to it herself. The CNA told me she wasn't going to do that till end of shift as the patient would wet herself, and then she would have to change the bed. I will leave you to imagine all I said, but it was along the lines of "I can't believe you just said that to me..."
I would like to suggest that you can "train" a person thoroughly in classes, but true caring comes from the heart.
The Director of Nursing at Hillside Village, Peg Wessel, was presented an award Thursday at the facility for excellence in nursing. Nurses from the Kansas state legislature were there, and there was a nice little party with the residents and families with cake and punch. If anyone deserves it, she does, as she leads by example.
In case you hadn't heard, the Kansas City Chiefs won the Superbowl! The whole city was ecstatic and came together to celebrate. Why can't this kind and gentler spirit last the rest of the year???
In the meantime, please be kinder than necessary. (per Suzel!)
Betty
I am going to talk about one more interaction with The Piper, and then I will forever move on from that subject. Right about the time I had told them I was moving Bob, an article was posted on their Facebook page about conflict resolution. I found it rather strange that it happened at the same time, but they assured me that an independent company took care of such. One paragraph stated that "the residents may be perfectly happy where they are, but it is the families that are not." I submit that Bob could not have told me if he was unhappy, so I had to be the advocate and use my powers of observation to perceive what was going on. Another paragraph: "It is important to move slowly so that decisions are not made from an emotional state." I had made excuses for the way things were for a long time, had made complaints, but nothing ever changed, just got progressively worse. Another statement was that they could not force the residents to shower. Yes, I agree. But when a resident is asked if they want to take a shower, they are always going to say "no". So then the staff can chart "resident refused" and move on. And they cannot be dragged in to shower. If the staff has proper dementia care training, and approach the resident the right way, maybe several times the same morning, and make a game of it, they would have better success.
I asked for an appointment with the owner of The Piper. I took 2 dear friends along, who had also observed for themselves what was going on, with the lack of staff. We all talked for over 2 hours, and the owner paid very close attention. I truly think he had no idea how bad it had become. At the end I told him that I hoped he would take what we said to heart, and make changes. He said "I will." As a sidelight, the article on Facebook on conflict resolution was taken down the next day. As I have said before, he has his job cut out for him. All these beautiful facilities are being built all over town with no one to staff them.
Let's go back at Hillside Village. They told me one day when I went out that they had put Bob on the toilet and he had had a large stool. When I voiced how happy I was to hear that, the young man said simply "It's all about dignity." I remember when my mother was in the nursing home here in town. I came in one day to check on her as I did regularly. She was crying and I asked why. She said she would ask them to put her on the bedpan. They would tell her just to go in her diaper as it was easier to clean up. Yes, it is all about dignity. And the following incident happened at the hospital where I worked. I was a team leader one night and asked my CNA to go give a patient some water as she was unable to get to it herself. The CNA told me she wasn't going to do that till end of shift as the patient would wet herself, and then she would have to change the bed. I will leave you to imagine all I said, but it was along the lines of "I can't believe you just said that to me..."
I would like to suggest that you can "train" a person thoroughly in classes, but true caring comes from the heart.
The Director of Nursing at Hillside Village, Peg Wessel, was presented an award Thursday at the facility for excellence in nursing. Nurses from the Kansas state legislature were there, and there was a nice little party with the residents and families with cake and punch. If anyone deserves it, she does, as she leads by example.
In case you hadn't heard, the Kansas City Chiefs won the Superbowl! The whole city was ecstatic and came together to celebrate. Why can't this kind and gentler spirit last the rest of the year???
In the meantime, please be kinder than necessary. (per Suzel!)
Betty
Saturday, January 11, 2020
The snow is gently falling and quiet except for the sounds of the snowplows and salt trucks going through periodically. The bears have it right--hibernate when the snow falls. Except they don't eat, and I don't go along with that. Everything is so peaceful and I am more at peace than I have been in several weeks.
I had been observing for awhile that Bob's care had gotten too heavy for the facility that he was in. When he first was admitted there, almost 3 years to the day, he was ambulatory and it was a good fit. But now that he is total care, it was just too much for the amount of staff they had. They limped along and made it through the holidays only because students were home from school periodically and picked up a few shifts of work. But then one of the regular staff was off after having surgery, and it brought to a head how little resources there were. Staff were working 12-16 hours a day and were exhausted mentally and physically. And the night shift staffing got to be in the critical range. I certainly sympathize with the problem, as in this area many glorious new facilities are being built with no thought of who is going to staff them. By the way, when a place starts intensely advertising and saying how great they are, BEWARE.
So with a great friend in tow, we started frantically searching for a new place. It was breaking my heart, as I love the staff (all 2 of them) at the place where he is now, and I love the residents and I love the other families. You all bond and become like family. But the search only highlighted the problem. We learned very quickly that you couldn't trust the rating and the comments on a facilities web site. How some comments about the same place could be at the opposite end of the spectrum was baffling! I got to the place I felt like some of the glowing ratings were fake. And medicare would even give a place a 5 star rating and when you walked in the smell of urine was overwhelming. Cross that off the list right away! The website "A place for mom" was helpful, but they readily admitted that places paid to be on their list. A person from the Alzheimer's Association that spoke at the funeral of a husband of a friend from our support group was kind enough to talk to me about how to pick a place. She said to just pop in a mealtime. See how the workers are interacting with the residents. See if they are talking to them. See if they are taking the time and patience to feed them properly. I felt the urgency of finding a new place quickly, so I had all kinds of people praying for me. Some of the places were deplorable. And I am so sad to say that one of the places that has a red flag for neglect and abuse is run by Advent Health (the new corporate name of Shawnee Mission Medical Center where Bob and I worked, and the hospital we loved.) I am so embarrassed by this that I could spit. They are building brand new sparkling sports medicine centers, and the nursing facility with a desperate need is in that condition? The aging population is now the greatest need and they are totally missing the boat in that area. I know 2 families that have their loved ones there and they are having to do all the care. I had almost come to the conclusion that I would have to move him to a place right down the street from me and just step into the hands on caregiving role. We got as far with one facility that they came to do an assessment on Bob, but they said right away that his level of care was too high for them. He doesn't need Alzheimer's care now, just good nursing care. When I had told them exactly at the facility what equipment etc. that he required, they assured me that "Oh we can do that!" But God shut that door and at support group I found out how thankful I was that He did, as one of the other ladies had had her husband there, and couldn't wait to bring him home. I knew bringing Bob home wasn't an option, as I would have died before he did. My mind would run wild at night. I thought of bringing him home and putting the hospice bed in the living room, and hiring my favorite CNA from The Piper to care for her and she could live in the spare bedroom. But then who would take care of the residents at The Piper!?
But then one day God flung the door open wide, just in time as I was getting exhausted and depressed. Another friend that was looking frantically also for a place for her mom with Alzheimer's told me she was going to go visit a place in Desoto, KS. She was given 3 days to find a place for her mom after she went off rehab. The hospice nurse practitioner had casually mentioned this place, but I had crossed it off my list as it is further away than even the drive I had to The Piper. It takes 25 minutes to get there and it is 25 miles away, but through beautiful Kansas farmland. Oops, no more zipping down the interstate at 80 mph....The name of the facility is Hillside Village of Desoto. I don't know why, as it isn't on a hillside, but the grounds are beautiful, and Bob has a beautiful view out his window instead of parked cars. The OWNER of the facility met us to give us the tour. There 87 beds, 49 on the rehab and long term care side and 38 on the assisted living side. We started off on the assisted living side where his mom is a resident, after fighting him when he had to move her from DesMoines, Iowa. As we continued the tour, I knew immediately that this was the place I wanted Bob. There was staff EVERYWHERE! There was a nursing station ON THE UNIT! Activities were going on, the place was being CLEANED! I asked the owner about halfway through if there were any private rooms available and shut my eyes and prayed while he was thinking. He messaged the director of nursing whose office was ON THE UNIT! Soon she came running down the hall, and told us at first she didn't think they did, but she had found a way to make it work. I immediately said "I'll take it!" It took a couple of days to do the paperwork, and they WORKED WITH hospice (instead of against them as before) to coordinate the move. Hospice got their new bed with an alternating pressure mattress to the new facility, picked up their old equipment at The Piper, and the facility picked Bob up in their transport van Thursday. I met him there, and it was lunchtime. They asked if he was hungry, and he said "YES!" They have since remarked how good an eater he is! And I took his prune juice along, and they looked at me funny and said "Why are you bringing that? We have plenty of that here!"
I am not going there today because of the weather. But I don't feel that I have to, and I can rest knowing he is being well cared for. When folks ask where he is and I tell them, EVERYONE says nothing but good about it. The director of nurses is roaming the halls, if you can believe that. She is friendly, the staff are friendly and everyone asks if you are looking bewildered "Can I help you?" Maybe they have been taught to do that, but they have been taught well. I can't help but think that maybe because it is a small town, and the workers are mostly from around there, that maybe it gives them a sense of community, and a desire to work together. Everyone from the shift nurse to the CNAs come in and sit down and chat to get acquainted. The OWNER roams the halls! He saw me as I was leaving the other day and gave me a big hug and said "You did it!" I said, "No, God did it!"
The administrator was wearing a Chiefs shirt yesterday. His office is right down the hall from Bob's room. You have heard that the Chiefs are in the playoffs Sunday, right? The director of nursing was wearing a Chief's shirt. Her office is also right on the unit. The nurse's office is 2 rooms down from Bob. His evening CNA had a Chief's shirt on. He is going to the game Sunday and tailgate. OK, maybe there are a FEW crazy people that work there.....
Thanks to all my friends who have supported me through all of this. I think this was even more traumatic than it will be when Bob dies. I am somewhat prepared for that. I was not prepared for this and the stress it would cause. But again, if it can be helpful to someone else, it was worth it.
Go Chiefs!
Betty
I had been observing for awhile that Bob's care had gotten too heavy for the facility that he was in. When he first was admitted there, almost 3 years to the day, he was ambulatory and it was a good fit. But now that he is total care, it was just too much for the amount of staff they had. They limped along and made it through the holidays only because students were home from school periodically and picked up a few shifts of work. But then one of the regular staff was off after having surgery, and it brought to a head how little resources there were. Staff were working 12-16 hours a day and were exhausted mentally and physically. And the night shift staffing got to be in the critical range. I certainly sympathize with the problem, as in this area many glorious new facilities are being built with no thought of who is going to staff them. By the way, when a place starts intensely advertising and saying how great they are, BEWARE.
So with a great friend in tow, we started frantically searching for a new place. It was breaking my heart, as I love the staff (all 2 of them) at the place where he is now, and I love the residents and I love the other families. You all bond and become like family. But the search only highlighted the problem. We learned very quickly that you couldn't trust the rating and the comments on a facilities web site. How some comments about the same place could be at the opposite end of the spectrum was baffling! I got to the place I felt like some of the glowing ratings were fake. And medicare would even give a place a 5 star rating and when you walked in the smell of urine was overwhelming. Cross that off the list right away! The website "A place for mom" was helpful, but they readily admitted that places paid to be on their list. A person from the Alzheimer's Association that spoke at the funeral of a husband of a friend from our support group was kind enough to talk to me about how to pick a place. She said to just pop in a mealtime. See how the workers are interacting with the residents. See if they are talking to them. See if they are taking the time and patience to feed them properly. I felt the urgency of finding a new place quickly, so I had all kinds of people praying for me. Some of the places were deplorable. And I am so sad to say that one of the places that has a red flag for neglect and abuse is run by Advent Health (the new corporate name of Shawnee Mission Medical Center where Bob and I worked, and the hospital we loved.) I am so embarrassed by this that I could spit. They are building brand new sparkling sports medicine centers, and the nursing facility with a desperate need is in that condition? The aging population is now the greatest need and they are totally missing the boat in that area. I know 2 families that have their loved ones there and they are having to do all the care. I had almost come to the conclusion that I would have to move him to a place right down the street from me and just step into the hands on caregiving role. We got as far with one facility that they came to do an assessment on Bob, but they said right away that his level of care was too high for them. He doesn't need Alzheimer's care now, just good nursing care. When I had told them exactly at the facility what equipment etc. that he required, they assured me that "Oh we can do that!" But God shut that door and at support group I found out how thankful I was that He did, as one of the other ladies had had her husband there, and couldn't wait to bring him home. I knew bringing Bob home wasn't an option, as I would have died before he did. My mind would run wild at night. I thought of bringing him home and putting the hospice bed in the living room, and hiring my favorite CNA from The Piper to care for her and she could live in the spare bedroom. But then who would take care of the residents at The Piper!?
But then one day God flung the door open wide, just in time as I was getting exhausted and depressed. Another friend that was looking frantically also for a place for her mom with Alzheimer's told me she was going to go visit a place in Desoto, KS. She was given 3 days to find a place for her mom after she went off rehab. The hospice nurse practitioner had casually mentioned this place, but I had crossed it off my list as it is further away than even the drive I had to The Piper. It takes 25 minutes to get there and it is 25 miles away, but through beautiful Kansas farmland. Oops, no more zipping down the interstate at 80 mph....The name of the facility is Hillside Village of Desoto. I don't know why, as it isn't on a hillside, but the grounds are beautiful, and Bob has a beautiful view out his window instead of parked cars. The OWNER of the facility met us to give us the tour. There 87 beds, 49 on the rehab and long term care side and 38 on the assisted living side. We started off on the assisted living side where his mom is a resident, after fighting him when he had to move her from DesMoines, Iowa. As we continued the tour, I knew immediately that this was the place I wanted Bob. There was staff EVERYWHERE! There was a nursing station ON THE UNIT! Activities were going on, the place was being CLEANED! I asked the owner about halfway through if there were any private rooms available and shut my eyes and prayed while he was thinking. He messaged the director of nursing whose office was ON THE UNIT! Soon she came running down the hall, and told us at first she didn't think they did, but she had found a way to make it work. I immediately said "I'll take it!" It took a couple of days to do the paperwork, and they WORKED WITH hospice (instead of against them as before) to coordinate the move. Hospice got their new bed with an alternating pressure mattress to the new facility, picked up their old equipment at The Piper, and the facility picked Bob up in their transport van Thursday. I met him there, and it was lunchtime. They asked if he was hungry, and he said "YES!" They have since remarked how good an eater he is! And I took his prune juice along, and they looked at me funny and said "Why are you bringing that? We have plenty of that here!"
I am not going there today because of the weather. But I don't feel that I have to, and I can rest knowing he is being well cared for. When folks ask where he is and I tell them, EVERYONE says nothing but good about it. The director of nurses is roaming the halls, if you can believe that. She is friendly, the staff are friendly and everyone asks if you are looking bewildered "Can I help you?" Maybe they have been taught to do that, but they have been taught well. I can't help but think that maybe because it is a small town, and the workers are mostly from around there, that maybe it gives them a sense of community, and a desire to work together. Everyone from the shift nurse to the CNAs come in and sit down and chat to get acquainted. The OWNER roams the halls! He saw me as I was leaving the other day and gave me a big hug and said "You did it!" I said, "No, God did it!"
The administrator was wearing a Chiefs shirt yesterday. His office is right down the hall from Bob's room. You have heard that the Chiefs are in the playoffs Sunday, right? The director of nursing was wearing a Chief's shirt. Her office is also right on the unit. The nurse's office is 2 rooms down from Bob. His evening CNA had a Chief's shirt on. He is going to the game Sunday and tailgate. OK, maybe there are a FEW crazy people that work there.....
Thanks to all my friends who have supported me through all of this. I think this was even more traumatic than it will be when Bob dies. I am somewhat prepared for that. I was not prepared for this and the stress it would cause. But again, if it can be helpful to someone else, it was worth it.
Go Chiefs!
Betty
Sunday, December 29, 2019
I have thought long and hard before writing this blog. How much do I tell? Do I even broach the subject? I have consulted with other people. I have made rough drafts. So it is the most difficult blog yet. I was on the ethics committee at the hospital where I worked, but we talked about ventilators and open heart surgeries and more acute things, since that is the setting that a hospital presents. Things like this never came up. And if you are not involved in the medical field at all, you may be as horrified as our kids were when they found out what was going on. But it is serious enough to cause death, and it had caused death in 2 of my friends the week before it happened to Bob. So maybe that is why it was so much on my mind. It is a most indelicate subject, so if you are at all queasy, you might not want to continue. But if I have made you at all curious, plunge right ahead! I finally decided that if my blog is to help others, they need to know that this can and does happen. It is embarrassing, but would have saved some of my friends a lot of grief if they had known. And since the purpose of all my blogs is to tell the true story, I need to be transparent, and not just pick the sweet topics. I have no doubt that Bob would not be alive today if I hadn't intervened. Not that I am so smart, but I have just had experience. And the other patients are more mobile than Bob, so maybe this isn't your usual problem where Bob is. He had never had a problem with this before, so it was a shock, and came out of the blue.
I will not accuse anyone, as some of the nurses didn't know this could happen because they had not had experience with it. But if you have worked in a nursing home setting, you cannot help but know about it. I took nurses training where part of the facility was acute care, and the other half was more like a nursing home, where we got basic nursing skills. So though it had been more than 60 years, I had not forgotten the signs and symptoms of a bowel impaction. Every evening the laxative tray was passed. We called it black and white (or brown cow)---milk of magnesia and cascara cocktails, if you please. Then the next morning it that hadn't worked, the patient was either given an enema or the stool that was impacted in the colon was manually removed. And of course the students got to do that! So when I was notified that Bob was having runny stools, a bell went off in my head. When a stool impaction occurs in the lower colon and isn't emptied, the more liquid stool from the upper colon just runs around it and the stool is continually running out. So I asked if Bob had been checked for an impaction. I was told "no." I asked both hospice and the facility to please do it, but it wasn't done. They said they had to have a doctor's order and then WHO on earth was going to do it? I finally said that well, I didn't have to have a doctor's order, and this little red hen was going to do it herself. I told them that I knew Bob was going to die, but I didn't want him to die of constipation. Everyone was quite taken aback by that proclamation! So I asked them to put Bob in bed, and took another old time nursing friend (who had also done the procedure many times) along with me for support. But with both of us, it had been over 60 years ago! Just as I expected, I found a huge impaction. Now, this makes the term "full of shit" become quite a literal thing. I couldn't reach it all, so then I knew it had to be moved down from the top. I got some prune juice (which doesn't need a doctor's order) and milk of magnesia (which they did get a doctor's order for.)
Thank goodness, I remembered the story a friend told the support group. She was caring for her husband at home, when the very same thing happened. The doctor didn't recognize the classic symptom of the runny stools, and ordered a colonoscopy. The prep from the colonoscopy wasn't enough to move it down, and she was up all night trying to keep things cleaned up. When he went for the colonoscopy the problem of the massive impaction was found. It took 3 weeks of laxatives to get the problem resolved, and then of course they didn't do another colonoscopy!
Let's go back to the aforementioned friends who had died the week before this happened with Bob. I had just been to one of the funerals the week before and her husband told me what happened. His wife's colon had become so full of stool that it had perforated (torn) and although she was taken to surgery, it was too late.
So I was quite frustrated, and 5 days after I had removed the initial impaction, the facility was still talking in a committee meeting about how to solve the problem. To make a long story short, (Ha!) I worked with the med aide on the unit and we developed a program of daily milk of magnesia and prune juice (which works even better when heated) and then every other day remove manually what had moved down. The stool was very hard, but fortunately there was still enough bowel motility to move it. So he is back to being able to do it himself, but as with my friend's husband, it took 3 weeks to accomplish. And we have developed better documentation with a paper chart kept in his room. Formerly they were just charted on the computer where they are out of sight and out of mind. With the other residents it is more difficult to keep track of, as they are more mobile, and if you asked them if they had had a stool today, they wouldn't remember!
I have checked with people that work in nursing homes, and impactions are still removed manually. So the practice is not a prehistoric dinosaur of my day! Eliminating waste is a basic body function along with all the others. I have no doubt Florence Nightingale would have addressed it, but she was busy on the battlefield.
I guess my message and the moral of this story would be to be persistent and don't be afraid to speak up for yourself, or be an advocate for your loved one about any medical problem. I wish the doctor's would listen more, but they have so little time with their patients that they are looking for the quick fix and are not experienced in elder care. There are no quick fixes there! It takes time and patience which Santa does not bring!
And now it is the New Year. My wish for all of you is a very happy, healthy, and regular 2020.
Betty
I will not accuse anyone, as some of the nurses didn't know this could happen because they had not had experience with it. But if you have worked in a nursing home setting, you cannot help but know about it. I took nurses training where part of the facility was acute care, and the other half was more like a nursing home, where we got basic nursing skills. So though it had been more than 60 years, I had not forgotten the signs and symptoms of a bowel impaction. Every evening the laxative tray was passed. We called it black and white (or brown cow)---milk of magnesia and cascara cocktails, if you please. Then the next morning it that hadn't worked, the patient was either given an enema or the stool that was impacted in the colon was manually removed. And of course the students got to do that! So when I was notified that Bob was having runny stools, a bell went off in my head. When a stool impaction occurs in the lower colon and isn't emptied, the more liquid stool from the upper colon just runs around it and the stool is continually running out. So I asked if Bob had been checked for an impaction. I was told "no." I asked both hospice and the facility to please do it, but it wasn't done. They said they had to have a doctor's order and then WHO on earth was going to do it? I finally said that well, I didn't have to have a doctor's order, and this little red hen was going to do it herself. I told them that I knew Bob was going to die, but I didn't want him to die of constipation. Everyone was quite taken aback by that proclamation! So I asked them to put Bob in bed, and took another old time nursing friend (who had also done the procedure many times) along with me for support. But with both of us, it had been over 60 years ago! Just as I expected, I found a huge impaction. Now, this makes the term "full of shit" become quite a literal thing. I couldn't reach it all, so then I knew it had to be moved down from the top. I got some prune juice (which doesn't need a doctor's order) and milk of magnesia (which they did get a doctor's order for.)
Thank goodness, I remembered the story a friend told the support group. She was caring for her husband at home, when the very same thing happened. The doctor didn't recognize the classic symptom of the runny stools, and ordered a colonoscopy. The prep from the colonoscopy wasn't enough to move it down, and she was up all night trying to keep things cleaned up. When he went for the colonoscopy the problem of the massive impaction was found. It took 3 weeks of laxatives to get the problem resolved, and then of course they didn't do another colonoscopy!
Let's go back to the aforementioned friends who had died the week before this happened with Bob. I had just been to one of the funerals the week before and her husband told me what happened. His wife's colon had become so full of stool that it had perforated (torn) and although she was taken to surgery, it was too late.
So I was quite frustrated, and 5 days after I had removed the initial impaction, the facility was still talking in a committee meeting about how to solve the problem. To make a long story short, (Ha!) I worked with the med aide on the unit and we developed a program of daily milk of magnesia and prune juice (which works even better when heated) and then every other day remove manually what had moved down. The stool was very hard, but fortunately there was still enough bowel motility to move it. So he is back to being able to do it himself, but as with my friend's husband, it took 3 weeks to accomplish. And we have developed better documentation with a paper chart kept in his room. Formerly they were just charted on the computer where they are out of sight and out of mind. With the other residents it is more difficult to keep track of, as they are more mobile, and if you asked them if they had had a stool today, they wouldn't remember!
I have checked with people that work in nursing homes, and impactions are still removed manually. So the practice is not a prehistoric dinosaur of my day! Eliminating waste is a basic body function along with all the others. I have no doubt Florence Nightingale would have addressed it, but she was busy on the battlefield.
I guess my message and the moral of this story would be to be persistent and don't be afraid to speak up for yourself, or be an advocate for your loved one about any medical problem. I wish the doctor's would listen more, but they have so little time with their patients that they are looking for the quick fix and are not experienced in elder care. There are no quick fixes there! It takes time and patience which Santa does not bring!
And now it is the New Year. My wish for all of you is a very happy, healthy, and regular 2020.
Betty
Wednesday, November 13, 2019
Bob has had a total of 4 seizures now. He had another one two weeks ago Saturday, and while no one witnessed it, the classic post-seizure symptoms were there--drooling, snoring respirations, and unresponsiveness. This past Saturday he had another episode, and was again unresponsive for 4 hours, but this was unlike any seizure he has ever had. This time there was distinct drooping on the left side of his mouth, but nothing else. His blood pressure was normal, so rather than say he had a stroke, the hospice nurse called it a "neurologic event." Leave it to Bob to mix things up a little. He is getting harder to feed, as he keeps falling asleep while I am trying to feed him. Except when dessert comes, and then he opens his eyes and his mouth, just like a little bird! He is especially partial to ice cream, so ice cream it is!
I would like to share a story that aired on the local news just recently. It is about a man that Kansas City residents will remember well. His name is Dennis Moore and he was a U.S. congressman, who represented Kansas' 3rd district from 1999 to 2011. He worked with several former presidents and helped pass bills for veterans. He was diagnosed in 2012 and his Alzheimer's is now progressing so he was placed in a home last year. I would like to echo some of the sentiments voiced by his wife Stephene (pronounced Stephenie). She says "A lot of times you hear, 'Talk to somebody', but a lot of people will say, 'Oh, I know what you are going through, because my grandmother had Alzheimer's.' They don't know anything about caring for a spouse." So Stephene now spends time with, advocates for and speaks on behalf of caregivers. After all, she understands the stress, financial worries, loss of dreams and grief that accompany the disease. I could not agree with her more. My father had Alzheimer's. Having a spouse with Alzheimer's is a whole different ballgame. She ended the interview by saying, "Take it slow; take every day for what it is. Live in the moment, lower your expectations, be a good advocate and cherish the moment." She says she knows he needs to be in a home where she can get sleep and know that he is safe. She knows she will need stamina for the long years ahead. I share her journey because I too, can relate to what she is experiencing with so many conflicting emotions. Part of me wants to cherish the moments I still have with Bob, and part of me just wants this rollercoaster ride to be over.
But during this season of thankfulness, I would like to express some of the things I am thankful for.
I am happy I can sleep at night.
I am happy that I still have good health and stamina.
I am happy that Bob doesn't know to ask to come home with me when I leave, like Dennis Moore does.
I am so happy I have such a great support group where I can talk to people that are in the same boat.
I am so happy that I have such a great support network of family and friends.
I am thankful for the care that hospice gives me and Bob. What would I do without them?
I am thankful for the facility where Bob resides and for the loving care that he gets each day.
I am thankful for ice cream. Bob likes plain vanilla. Make mine butter pecan or maple walnut!
And yes, I am thankful for, and cherish the moments I still have with Bob.
And I am thankful that there is a faithful, never-changing God in control. Every day begins and ends with His purpose. Every moment of our lives is in His constant care.
Happy Thanksgiving!
Betty
I would like to share a story that aired on the local news just recently. It is about a man that Kansas City residents will remember well. His name is Dennis Moore and he was a U.S. congressman, who represented Kansas' 3rd district from 1999 to 2011. He worked with several former presidents and helped pass bills for veterans. He was diagnosed in 2012 and his Alzheimer's is now progressing so he was placed in a home last year. I would like to echo some of the sentiments voiced by his wife Stephene (pronounced Stephenie). She says "A lot of times you hear, 'Talk to somebody', but a lot of people will say, 'Oh, I know what you are going through, because my grandmother had Alzheimer's.' They don't know anything about caring for a spouse." So Stephene now spends time with, advocates for and speaks on behalf of caregivers. After all, she understands the stress, financial worries, loss of dreams and grief that accompany the disease. I could not agree with her more. My father had Alzheimer's. Having a spouse with Alzheimer's is a whole different ballgame. She ended the interview by saying, "Take it slow; take every day for what it is. Live in the moment, lower your expectations, be a good advocate and cherish the moment." She says she knows he needs to be in a home where she can get sleep and know that he is safe. She knows she will need stamina for the long years ahead. I share her journey because I too, can relate to what she is experiencing with so many conflicting emotions. Part of me wants to cherish the moments I still have with Bob, and part of me just wants this rollercoaster ride to be over.
But during this season of thankfulness, I would like to express some of the things I am thankful for.
I am happy I can sleep at night.
I am happy that I still have good health and stamina.
I am happy that Bob doesn't know to ask to come home with me when I leave, like Dennis Moore does.
I am so happy I have such a great support group where I can talk to people that are in the same boat.
I am so happy that I have such a great support network of family and friends.
I am thankful for the care that hospice gives me and Bob. What would I do without them?
I am thankful for the facility where Bob resides and for the loving care that he gets each day.
I am thankful for ice cream. Bob likes plain vanilla. Make mine butter pecan or maple walnut!
And yes, I am thankful for, and cherish the moments I still have with Bob.
And I am thankful that there is a faithful, never-changing God in control. Every day begins and ends with His purpose. Every moment of our lives is in His constant care.
Happy Thanksgiving!
Betty
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