Yesterday was the first assessment appointment for dad at the VA home, so my sister and I went armed with questions. When we arrived, we walked into a room with several people sitting around a table, which felt a little intimidating at first. There were nurses and nursing heads, dietician, activities director and our super nice social worker. In fact, we like her even more than the first one from the nursing home side, so that's a nice bonus.
I was kind of hoping they'd go over dad's charts and give a play-by-play on how he's doing but they started by asking if we had questions. We asked how he was adjusting and things like if he's sleeping, participating in activities and if he seems fazed by being in lockdown. So far, so good. They said he's very pleasant and nice to everyone and he's been participating in some trivia games and the activities director even does some one-on-one time with residents and played some connect four with him. It was hard to hear her explain how he seemed to grasp the concept but couldn't quite come up with a win on his own. She even asked if he's played it before and my sister and I looked at each other like, "did he?, are you kidding?" I don't think either of us could beat him at that game. I said he was "sharp as a tack." So that sort of tells us about his cognitive skills and where they are heading. But we were happy to learn that he happily participates.
He also works on his usual crossword puzzles and word searches and watches TV in the common area. We were told that he has no issues with meal time or eating but the only flag on his chart is getting him to shower. We suggested that they don't pose it as a question to him, but rather tell him it's his turn on the schedule. It's also quite possible he's forgotten what to do as we explained a time when we asked him to shower, handed him brand new soap, heard the water turn on and he later emerged fully dressed but never opening the soap. Again, sad.
They said he seems to be sleeping but it didn't sound like it was consistent but they don't seem to push it on that ward as I think those with brain issues just sort of do their thing and I just don't know how they function on little sleep, but they do. He is still on Zoloft although they did increase the dose. They said it will likely stay at 100mg unless something drastic happens where they feel an adjustment is needed.
We worked out some kinks about signing him out of the lockdown wing to be able to take him to the areas where he can smoke and shoot pool. Originally they had him on a 'do not serve' list for alcohol but it was enforced a step further that they didn't want him in that part of the facility after 1pm when they start serving. We just couldn't let that stand. How in the world were family members able to take him anywhere on a visit? We can't always get there before 1pm and we usually like to spend an afternoon with him, sometimes joining him with a meal. So they agreed that he is properly monitored when family is accompanying him and lifted the ban. We still will not let him drink beer, but it's nice that he can go shoot pool, which is something he now associates with family visitors who can sign him out.
All in all, it was a nice visit. But I have to say the toughest thing about the day was witnessing the music hour before serving dinner in the dining hall. As we went on a quick tour thru the unit, we saw dad sitting at a table in the corner, while we heard music being played and an activities person using a loud, but calm, sing-songy voice. Almost like a kinder-care atmosphere. We peeked in to see 95% of the residents who were in wheelchairs, just sitting there in a trance. Some sang along, some rattled a little tambourine, and there was dad - just sitting. Heartbreaking. But as we approached him, we noticed he was flipping through a military magazine so that helped. We joked if he was going to sing, knowing he'd never in a million years do that, even before there were holes in his brain. He laughed and said "no." So we joked that maybe we'd go sing, and he laughed some more. He knows we'd never do that, either!
Oh, yeah, and one last question we didn't need to ask was if he could see a barber. We noticed that not only was the scruffy beginnings of a beard he came to the home with shaved off, but so was his moustache! It was like, "that's not our dad!" We've never seen him without it. Mom said he grew it in Vietnam and has never been without it since. Once we got used to it, it's kind of nice.
But, as if he wasn't already the youngest resident over there, he just (literally) shaved off another 10 years or so!
Thursday, February 27, 2014
Sunday, February 23, 2014
Out of sight but on our mind
When we first dropped off dad I thought about calling him every day and in the beginning we took turns calling. But we wondered if that would prove to be difficult on him, making him think we were heading for a visit every day. Since he's over an hour away, this isn't something we can do so we thought visiting on weekends as best we can and hoped that other family would pop in to see him between our visits.
It started off ok and calling was a nice way to check in on him each day and to remind him of activities and other things he needed to do. Then he was moved to lockdown and those reminders were a painful memory of what he used to be able to do. I was almost afraid to call him, only to have him say he no longer likes it at the home. Thankfully, so far he's been alright and our almost weekly visits to sign him out to partake in activities has become something we all look forward to. It seems he's figured out how to use his new cell phone and has called, asking what time we were coming and it breaks my heart to tell him "not today, but we'll see you Saturday." We're not entirely sure he knows what day it is from the next.
Today, we went back to his house for the first time since moving him and it was difficult. We probably filled at least a dozen black garbage bags with trash and junk. There's just not a whole lot there worth saving, and that's what makes it sad. Some of the items were things he took with him post-divorce, which made us think of our childhood. We kept a few things for that reason, but threw out most of it as it felt best to purge. We also moved most of the furniture to the garage. The nasty couch that he slept on, the old, beat up bedroom set that our parents shared, and a bunch of odds and ends. Most of it will be trashed and whatever we can salvage will be sold.
It felt weird, like we were looting the place. It probably almost appeared heartless at times but if we stopped to think about it too much, we'd never get anything accomplished, and this needs to be done for dad. He has no money and owes a lot of money to creditors, for taxes, his HOA, and the list goes on. The only way we can save the situation is to sell his house. He's in a mess and has been for years. We need to fix it. It's just a little weird without him there. Well, at least physically...
It started off ok and calling was a nice way to check in on him each day and to remind him of activities and other things he needed to do. Then he was moved to lockdown and those reminders were a painful memory of what he used to be able to do. I was almost afraid to call him, only to have him say he no longer likes it at the home. Thankfully, so far he's been alright and our almost weekly visits to sign him out to partake in activities has become something we all look forward to. It seems he's figured out how to use his new cell phone and has called, asking what time we were coming and it breaks my heart to tell him "not today, but we'll see you Saturday." We're not entirely sure he knows what day it is from the next.
Today, we went back to his house for the first time since moving him and it was difficult. We probably filled at least a dozen black garbage bags with trash and junk. There's just not a whole lot there worth saving, and that's what makes it sad. Some of the items were things he took with him post-divorce, which made us think of our childhood. We kept a few things for that reason, but threw out most of it as it felt best to purge. We also moved most of the furniture to the garage. The nasty couch that he slept on, the old, beat up bedroom set that our parents shared, and a bunch of odds and ends. Most of it will be trashed and whatever we can salvage will be sold.
It felt weird, like we were looting the place. It probably almost appeared heartless at times but if we stopped to think about it too much, we'd never get anything accomplished, and this needs to be done for dad. He has no money and owes a lot of money to creditors, for taxes, his HOA, and the list goes on. The only way we can save the situation is to sell his house. He's in a mess and has been for years. We need to fix it. It's just a little weird without him there. Well, at least physically...
Sunday, February 16, 2014
One week
Dad made it through one week before being moved to another room. We were told he was on a wait list to move from a quad to a semi-private room. But this wasn't that. He was being moved to the dementia wing - lockdown. We always knew he'd end up there at some point, but not this soon. He's 64 and completely mobile and that seemed to be the trouble.
From the moment we dropped him off, he seemed like a kid in a candy shop, exploring every square inch of the facility within the first two days. Always on the go, which we thought was a great thing. He was finding interests and things that he enjoys like shooting pool and also found the designated smoking areas without too much trouble. We felt confident that by setting him up on a routine where he has to ask the nurse's station for his cigarettes, it would prevent him from just lighting up whenever and wherever he wanted. It was working well.
It was when I called him the next morning after dropping him off that we learned something odd. At first he told me just how much he was liking it there and that he's been playing pool and met other veterans. It really warmed my heart that he was enjoying himself and wasn't asking when he was going home. But then he said that some guy told him they started serving beer around 1:00 p.m. and he was looking forward to getting a couple. We learned the hard way that he can no longer handle alcohol with his brain being the way it is. My husband and I had to carry him into his house around Christmas and he was in such bad shape, I prayed he didn't die that night on the couch. We had been vigilant in keeping him away from his beer ever since.
I thought that can't be right. They can't have a bar on the facility, can they?! I let it go, thinking it might have been one delusional resident leading another. I ran it past other family members and even a few coworkers and they all thought it wasn't worth stressing over because how could a nursing home facility serve alcohol when they've got residents on all sorts of medications or with issues that would not be able to handle drinking?
The next day, my sister took a turn to call him and she said he sounded off. Her gut instincts told her something was not right. As they talked, he again brought up the beer, telling her he had a couple while shooting pool. We think he only had a few bucks on him and probably couldn't get many, but that wasn't the point. He now knew where the beer was. He found it on the very first day there and with his OCD tendencies, it would become a regular stop in his day. And with his FTD, unable to know when to stop drinking it.
Calls were instantly made to the social worker and nursing staff where it was confirmed that they have a veteran's hall which serves beer six days a week for EIGHT hours a day! The challenge is they have a section with dormitories for residents who can live independently, and could likely handle a few beers. But there's no stopping anyone from the nursing home side from going there, too. I suspect this may not be a huge problem because most of the nursing home veterans are well into their eighties, in a wheelchair, some missing a leg. Not exactly the same as our mobile and swift, young dad.
So they put him on a "do not serve" list and told us they have police who can look out after him. We didn't exactly want him to feel punished and threatened while trying to hang out in a part of the facility that he actually enjoys. It was a mess. We decided to go see him a couple days later on the weekend to scope it out for ourselves. We found that we had to really deter him and distract him about not having beer, but the nice thing about his current personality is that he's so agreeable. He never puts up a fight about us telling him when he can't do something. So maybe this wouldn't be so bad afterall? Maybe as long as a staff member tells him no, he'll agree and forget about it? We saw how much he enjoyed walking around and playing pool that we just didn't have the heart to have him banned from that particular building.
The next day we got a call that they had to put him on a one on one order where someone had to "babysit" him all day and that he's hardly slept, if at all, for the last four days. Well, it's no wonder he's becoming unmanagable. He needs sleep! Turns out that the OCD tendencies were really ramped up and he started pestering many of the veterans for beer, cigarettes, or money to buy both. He started wandering into areas that he didn't belong, and even lit up inside an area clearly marked "no smoking". We could tell that he seemed tired and when he is, his judgement is worse and he gets more forgetful. We were starting to feel like none of the staff seemed to want to understand this disease and that it's not your general dementia. Why couldn't they simply suggest to him to go sleep?
We continued to check in on him every day, with each of us taking a turn calling his cell to see how he sounded and to remind him of what he should and shouldn't be doing. We also checked in with the nurses to see if they had anything more to report and to relay our suggestions on what works for us when managing his mind. A few days later he was moved to lockdown. It absolutely broke our hearts.
If we thought he was the youngest veteran before, he certainly was going to be now. It killed us to think about how he had a week of absolute freedom to do what he wanted and was now being reduced to a couple hallways, his room that he's sharing with the oldest resident there, and has to have a staff member at his side for every activity he would like to do, including smoking. I think they even have to light the damn cigarette for him, too. The walks he enjoyed, the pool table, the coffee club - all gone.
After a few lengthy conversations with heads of nursing and a new social worker for his new wing, we began to accept their decision. It was getting to the point that they feared for his safety as the more he pestered residents the more angry they were getting and were beginning to threaten him with physical force. It angered us that it was so unfair that the residents with most freedom, who could actually live on their own, don't have a clue about this disease, but we certainly didn't want the next phone call telling us that dad was severely injured by one of them, either.
So they will take good care of him there and they have the staff best equipped to handle dementia care. That wing has more staff per resident and more doctors than the other section, so we have to realize he's in good hands. They said they will do some cognitive therapy and see if he improves and see if maybe he settles in more and that the zoloft he was given would calm the OCD tendencies down. We've learned that he's finally getting some sleep and we hope that maybe he could move back to the nursing home side, but we won't hold our breath.
From the moment we dropped him off, he seemed like a kid in a candy shop, exploring every square inch of the facility within the first two days. Always on the go, which we thought was a great thing. He was finding interests and things that he enjoys like shooting pool and also found the designated smoking areas without too much trouble. We felt confident that by setting him up on a routine where he has to ask the nurse's station for his cigarettes, it would prevent him from just lighting up whenever and wherever he wanted. It was working well.
It was when I called him the next morning after dropping him off that we learned something odd. At first he told me just how much he was liking it there and that he's been playing pool and met other veterans. It really warmed my heart that he was enjoying himself and wasn't asking when he was going home. But then he said that some guy told him they started serving beer around 1:00 p.m. and he was looking forward to getting a couple. We learned the hard way that he can no longer handle alcohol with his brain being the way it is. My husband and I had to carry him into his house around Christmas and he was in such bad shape, I prayed he didn't die that night on the couch. We had been vigilant in keeping him away from his beer ever since.
I thought that can't be right. They can't have a bar on the facility, can they?! I let it go, thinking it might have been one delusional resident leading another. I ran it past other family members and even a few coworkers and they all thought it wasn't worth stressing over because how could a nursing home facility serve alcohol when they've got residents on all sorts of medications or with issues that would not be able to handle drinking?
The next day, my sister took a turn to call him and she said he sounded off. Her gut instincts told her something was not right. As they talked, he again brought up the beer, telling her he had a couple while shooting pool. We think he only had a few bucks on him and probably couldn't get many, but that wasn't the point. He now knew where the beer was. He found it on the very first day there and with his OCD tendencies, it would become a regular stop in his day. And with his FTD, unable to know when to stop drinking it.
Calls were instantly made to the social worker and nursing staff where it was confirmed that they have a veteran's hall which serves beer six days a week for EIGHT hours a day! The challenge is they have a section with dormitories for residents who can live independently, and could likely handle a few beers. But there's no stopping anyone from the nursing home side from going there, too. I suspect this may not be a huge problem because most of the nursing home veterans are well into their eighties, in a wheelchair, some missing a leg. Not exactly the same as our mobile and swift, young dad.
So they put him on a "do not serve" list and told us they have police who can look out after him. We didn't exactly want him to feel punished and threatened while trying to hang out in a part of the facility that he actually enjoys. It was a mess. We decided to go see him a couple days later on the weekend to scope it out for ourselves. We found that we had to really deter him and distract him about not having beer, but the nice thing about his current personality is that he's so agreeable. He never puts up a fight about us telling him when he can't do something. So maybe this wouldn't be so bad afterall? Maybe as long as a staff member tells him no, he'll agree and forget about it? We saw how much he enjoyed walking around and playing pool that we just didn't have the heart to have him banned from that particular building.
The next day we got a call that they had to put him on a one on one order where someone had to "babysit" him all day and that he's hardly slept, if at all, for the last four days. Well, it's no wonder he's becoming unmanagable. He needs sleep! Turns out that the OCD tendencies were really ramped up and he started pestering many of the veterans for beer, cigarettes, or money to buy both. He started wandering into areas that he didn't belong, and even lit up inside an area clearly marked "no smoking". We could tell that he seemed tired and when he is, his judgement is worse and he gets more forgetful. We were starting to feel like none of the staff seemed to want to understand this disease and that it's not your general dementia. Why couldn't they simply suggest to him to go sleep?
We continued to check in on him every day, with each of us taking a turn calling his cell to see how he sounded and to remind him of what he should and shouldn't be doing. We also checked in with the nurses to see if they had anything more to report and to relay our suggestions on what works for us when managing his mind. A few days later he was moved to lockdown. It absolutely broke our hearts.
If we thought he was the youngest veteran before, he certainly was going to be now. It killed us to think about how he had a week of absolute freedom to do what he wanted and was now being reduced to a couple hallways, his room that he's sharing with the oldest resident there, and has to have a staff member at his side for every activity he would like to do, including smoking. I think they even have to light the damn cigarette for him, too. The walks he enjoyed, the pool table, the coffee club - all gone.
After a few lengthy conversations with heads of nursing and a new social worker for his new wing, we began to accept their decision. It was getting to the point that they feared for his safety as the more he pestered residents the more angry they were getting and were beginning to threaten him with physical force. It angered us that it was so unfair that the residents with most freedom, who could actually live on their own, don't have a clue about this disease, but we certainly didn't want the next phone call telling us that dad was severely injured by one of them, either.
So they will take good care of him there and they have the staff best equipped to handle dementia care. That wing has more staff per resident and more doctors than the other section, so we have to realize he's in good hands. They said they will do some cognitive therapy and see if he improves and see if maybe he settles in more and that the zoloft he was given would calm the OCD tendencies down. We've learned that he's finally getting some sleep and we hope that maybe he could move back to the nursing home side, but we won't hold our breath.
Monday, February 10, 2014
Nursing home
We dropped dad off at the nursing home five days ago and it was probably one of the most difficult things we've ever done. As the phone calls from police increased, it was becoming more and more apparent that he could not be left on his own. He was on a wait list at this point, but every day we waited was another day too many. He would run out of cigarettes and head out to wander around his neighborhood, asking anyone he ran into if he could bum a smoke. This wasn't against the law but simply an annoyance. We had made the police aware of his diagnosis about a month prior and they had been understanding and patient with him. It wasn't until dad took his search for cigarettes a step further by looking in parked cars that they ended up having no choice but to arrest him.
The disease seems to really ramp up OCD tendencies. I think not necessarily about the nicotine addiction at this point, but more about running out and then going out for a walk to find more. It's a routine and we've found that he has several of them.
We made the tough decision to let him stay in jail for a few days as the police suggested it would keep him safe and possibly move up or even drop his court date. It gave us time to get things ready for the nursing home while we waited for the call. By some stroke of luck we received that call while he was in jail! My sister and I scrambled to get things ready for him as it was looking more and more like we'd be getting him from jail and heading straight to the nursing home. We were so afraid of what sitting in jail for several days might do to his brain but when we picked him up, he gave us a huge smile and a wave as if it he was completely unfazed about the whole ordeal. My sister and I agreed we would never forget that moment.
When he told us that it wasn't too bad being there, that they fed him, let him work on his crossword puzzles, and watch tv, I told him "well if you liked jail, you'll really like where we are going now!" We had to start pumping him up about the veterans home. It's so hard. We always feel like we are tricking him. But he seemed ok with it as we had previously taken a tour and he expressed being interested in going.
We met all the amazing staff members and got him settled in while he stepped out for at least a dozen cigarette breaks. It was a lot to take in and I wonder if it was just as overwhelming for someone with a brain disease. By the time we were ready to leave, he seemed to be shutting down and focused on his crossword puzzles, barely looking up at us. I think he was tired, and so we left and hoped he would adjust.
He is easily 20 years younger than the other veterans.
The disease seems to really ramp up OCD tendencies. I think not necessarily about the nicotine addiction at this point, but more about running out and then going out for a walk to find more. It's a routine and we've found that he has several of them.
We made the tough decision to let him stay in jail for a few days as the police suggested it would keep him safe and possibly move up or even drop his court date. It gave us time to get things ready for the nursing home while we waited for the call. By some stroke of luck we received that call while he was in jail! My sister and I scrambled to get things ready for him as it was looking more and more like we'd be getting him from jail and heading straight to the nursing home. We were so afraid of what sitting in jail for several days might do to his brain but when we picked him up, he gave us a huge smile and a wave as if it he was completely unfazed about the whole ordeal. My sister and I agreed we would never forget that moment.
When he told us that it wasn't too bad being there, that they fed him, let him work on his crossword puzzles, and watch tv, I told him "well if you liked jail, you'll really like where we are going now!" We had to start pumping him up about the veterans home. It's so hard. We always feel like we are tricking him. But he seemed ok with it as we had previously taken a tour and he expressed being interested in going.
We met all the amazing staff members and got him settled in while he stepped out for at least a dozen cigarette breaks. It was a lot to take in and I wonder if it was just as overwhelming for someone with a brain disease. By the time we were ready to leave, he seemed to be shutting down and focused on his crossword puzzles, barely looking up at us. I think he was tired, and so we left and hoped he would adjust.
He is easily 20 years younger than the other veterans.
Introduction
Hello.
This is the space where our family can freely write about the status of our dad's Frontotemporal Dementia. Some days it might be a simple post explaining he's having a good day where we have something nice to share or it might be a place to vent when he's not. I'd like to see this become a place where others who have loved ones with FTD can come to compare notes or find peace that they are not alone with caring for someone with this disease.
According to The Association for Frontotemporal Degeneration:
Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the anterior temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. The hallmark of FTD is a gradual, progressive decline in behavior and/or language that often has a relatively young age at onset (mid-50s to 60s), but has been seen as early as 21 and as late as 80 years. As the disease progresses, it becomes increasingly difficult for people to plan or organize activities, behave appropriately in social or work settings, interact with others, and care for oneself, resulting in increasing dependency.
FTD represents an estimated 10%-20% of all dementia cases and is recognized as one of the most common dementias affecting a younger population. It is estimated that FTD affects approximately 50,000-60,000 Americans. FTD occurs equally in men and women. In a minority of cases, it is inherited.
While there are currently no treatments to slow or stop the progression of the disease, FTD research is expanding, producing greater understanding of the disorders. We anticipate that this knowledge will result in a growing number of potential therapeutics entering clinical testing within the next few years.
If you've stumbled across this blog because you were looking for more info on FTD, I'm sorry that you had reason to find us, but hopefully we can all bond together, learn from one another and support one another while navigating through such an awful disease.
This is the space where our family can freely write about the status of our dad's Frontotemporal Dementia. Some days it might be a simple post explaining he's having a good day where we have something nice to share or it might be a place to vent when he's not. I'd like to see this become a place where others who have loved ones with FTD can come to compare notes or find peace that they are not alone with caring for someone with this disease.
According to The Association for Frontotemporal Degeneration:
Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the anterior temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. The hallmark of FTD is a gradual, progressive decline in behavior and/or language that often has a relatively young age at onset (mid-50s to 60s), but has been seen as early as 21 and as late as 80 years. As the disease progresses, it becomes increasingly difficult for people to plan or organize activities, behave appropriately in social or work settings, interact with others, and care for oneself, resulting in increasing dependency.
FTD represents an estimated 10%-20% of all dementia cases and is recognized as one of the most common dementias affecting a younger population. It is estimated that FTD affects approximately 50,000-60,000 Americans. FTD occurs equally in men and women. In a minority of cases, it is inherited.
While there are currently no treatments to slow or stop the progression of the disease, FTD research is expanding, producing greater understanding of the disorders. We anticipate that this knowledge will result in a growing number of potential therapeutics entering clinical testing within the next few years.
If you've stumbled across this blog because you were looking for more info on FTD, I'm sorry that you had reason to find us, but hopefully we can all bond together, learn from one another and support one another while navigating through such an awful disease.
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