@somemom I certainly get that part about wanting your mother to be at peace. I sometimes wonder how long this can all go on. It’s hard on all of us. My mom really wants this to be over. That is so funny that she said that to your DH especially since he seems to be very involved!
@psychmomma and @Somemom - I am overwhelmed just thinking about all you are doing for your parents. You absolutely deserve a break for your own sanity. I have needed breaks and I am not dealing with nearly the issues that you both are. How do people do this that don’t have the time or resources to do so??
I agree. This thread has been great for me to see that there are so many of us in this situation doing what we can for our parents. I’m not alone and there’s no reason to feel sorry for myself. I appreciate everyone sharing their experiences. I’ve been in a bit of a funk lately. Everything was coming at me all at once. I’m learning that’s it’s okay, in fact necessary to take a break. I’m also learning that it’s different everyday. Some days are better than others. I need to take it one day at a time as trite as that may sound.
We put some new care in place for my mom. She went from her condo to the AL facility three months ago. Before that she was living independently. You would not believe the decline that has taken place in three months. It’s absolutely shocking, but she is 92. She has absolutely no mobility at all and is completely incontinent. Because of all this the staff at the AL advised us to move her out of their facility and into a nursing home since her needs are beyond their capabilities. This was an unfortunate conversation since my mother adjusted to being there so much better than we would have ever expected. She actually likes it there. The staff wheels her in the wheelchair down to meals and she loves the socialization. Long story short, we’ve had meetings all week and worked it out that she can stay at the AL with private health aides and hospice nurses coming in and out of her “apartment” many hours a day. We’ll see if we can work this out since she really doesn’t want to be moved to a nursing home. Today has been a good day.
@ams5796 it is stunning how much change you see in a senior after a move like this. My FIL had been living in their 50 year old, two story home with a large yard and disabled MIL. They had many in home services, cleaner, health care aide, gardener, etc., but when he moved to IL, he fell apart. We had to move him to AL within two weeks. He was a basket case and I realized that living in his home of 50 years meant he had hardwired habits that took no energy. To learn everything anew, how to get to the bathroom, where his stuff was, etc., that was exhausting.
Exactly @somemom! She could get through the day with very little thought at her condo. All of a sudden one night she couldn’t get off the toilet and she sat there for four hours before she pushed her lifeline. That was the beginning of the end. She went to the hospital, to the rehab center and ultimately the AL facility. This AL is a social model. No one told us that when we were moving her in. We thought she was doing great and we all loved the warmth of the place. Lately we’ve learned that she would have been better off at a an AL facility that is a medical model. Ahh, the information we’re learning now. One of the reasons we don’t want to move her to a nursing home until we absolutely have to is that we’re worried about how much more she’ll decline with the move. Mentally she’s pretty good although today she asked me who won the Super Bowl.
I hope everyone here has a peaceful weekend.
@ams5796 just because many of us are on this road doesn’t mean it doesn’t sometimes suck, and it’s ok to admit that.
Looks like I might be in the lane right behind you. My mom is not bouncing back from her recent hospitalization the way she always has before. And the rehab care team is voicing the real prospect of going not from rehab back to IL where she was, or even to AL, but to SNF. She still might bounce back, but the odds are dropping. So how do you plan and prepare for that? Her 4 kids live in different cities, 200-800 miles from her CCRC, and so far we’ve been rotating our presence there and filling in with aides for the last 6 weeks or so.
We’re trying to be supportive and flexible, and so far we’re all getting along and communicating, so that part is working, but the stress of not knowing how to plan for tomorrow let alone next month is building.
Thanks to all who contribute to this thread, I’ve learned so much over the years and have such admiration for the loving care so many of you are providing for your parents and even in-laws. It’s been helpful to have some role models, and somehow knowing in advance that it won’t be a straight or smooth path makes it easier to accept the bumps along the way.
@MomofJandL It’s very tough to plan and prepare for that. That’s so much of the problem. We have no idea how quickly they will decline and because of that where they should be. We researched and researched and we still feel like we made many mistakes in my mom’s placement. And, once the placement is made it’s difficult to switch it up. On the good side it’s great that there are four of you and that you’re all working well together.
I finally got confirmation from the MD of vascular dementia with lots of small brain bleeds. I am wondering if the AL med error with too much Coumadin may have accelerated things. I feel there is a lot of info out there on Alzheimer’s but can’t find much on vascular dementia. I do notice progression in steps. Yesterday I got more calls than usual from my mother. She was using her phone to try to control the tv and called maintenance to fix it because it wouldn’t turn on! Apparently this is common. We went to the dentist and she wished everyone Merry Christmas! ? She lost her cane and went all over the AL asking for her pocketbook. Wrong word. But at least she is still talking. I managed to get her to indoor volleyball, her first activity in a year. The group was mostly memory care. I stood at the glass door to get her started and she kept making funny grimaces at me. I left and when I returned she was all excited and said she had had fun. The plus side to second childhood!
@compmom I believe my mom has mixed dementia. I wrote earlier about a recent precipitous decline and arranging or hospice. She has now stabilized, and a little better. Sounds like stair-stepping decline to me. Difficult to plan for because I don’t know when the next precipitous decline will come. I think baseline Alzheimer’s with superimposed vascular. Actually, autopsies show most dementia is mixed.
GTAlum with the improvement, is your mother staying on hospice?
Had a long talk with the neuropsychologist yesterday after we brought my mom home from rehab. Both parents have significant cognitive difficulties. They could be managed if they were individuals living in separate rooms but as a couple it is a bad situation. Dad has relied on mom to be his “brain/memory” for 5 years and now she cannot do that, but he cannot understand that and continues to relentlessly ask her questions that she cannot understand.
The neuropsych has assured me that the ALF should not be putting all this on me to solve; she has worked at other places that are much more aggressive in designing care, but mine seems to put off anything out of the ordinary to the family, which I am not realizing is not helpful!
I cannot imagine having to move them yet again, but that may be what is needed - to a different facility, farther away, that is more ready to support 2 people who have no sense of time or place but are still “with it” in all other respects. Apparently memory care would not be appropriate here because those residents are mostly non-verbal and non-ambulatory, so my parents would have no peers.
I have absolutely no idea how this is going to end up. For now, we are paying a fortune in private aides to babysit them and interrupt the dysfunction communication going on.
I don’t know how some of you do it, but I cannot see a future in which I would quit my job and move in to be their caretaker. I know some people do that but I cannot imagine my mental health would be up to that.
I do t know what facilities your neuropsych. is familiar with but everyone i have talked with- home care nurses, social workers, ombudsman, consultants - agrees that assisted livings don’t do much. Residents are tenants . There are so many regulations limiting what they can do. In my experience and others I know, family had to do a lot. Pretty much everything. We have formed a daughters group: we all end up sleeping at the AL to avoid the expense of private aides. The AL aides are busy and I do cleaning up of accidents, PRN meds, shower, cueing Depends changes etc etc even if these things are listed in her plan. The one possibility for you that might help is getting one or both parents on hospice or pre-hospice for dementia. I think there needs to be more attention to elderly who are not functioning well and have no memory but still walk and talk. Like you, we feel caught between the inadequacy of AL and the apparent ineligibility for memory care as yet.
I’ve mentioned that my mother has Lewy Body Dementia, one of the hallmarks is variable cognition and variable physical abilities. She has crazy days, talking to people not there, doing essentially laps between her bedroom and the kitchen/living room, over and over. Once she has had a few crazy days, she then has a few sleep all day days.
When I was gone last weekend, she was crazy, then she was great, then she was weird for a few days. Yesterday and today she was in bed almost the entire days. She got up once for lunch Friday and had not gotten up at all Saturday. Really bizarre, I checked her midday and she’d peed the bed, that has never happened. DD and I changed her and the bed, a few hours later, she peed the bed again. I was wondering how I would know if this was a new plateau or just a new turn to her sleepy days. I dug out some depends from my Dad’s last week and then I saw she never took her morning pills, including Aricept.
Not sure if it is the pill or just the rest, but a short time later she was popping out of her room.
In the words of 8th graders everywhere, “this sucks”
In general terms, since this new phase started almost a year ago, she has not had that many “crazy days.” I supposed delusional days would be more appropriate to say, but they are just crazy days for all of us 
@compmom I’m not sure about hospice. I refused a hospice evaluation from one place as I was not happy with the nurse who came to do the evaluation and I wanted a different organization (for profit vs non profit. There is a difference!). I am now speaking to the organization I wanted and they have not yet come out to do an evaluation. I am thinking I will hold off as putting her on and off will feels stressful to me. My mom certainly seems to have much more cognitive decline than yours. No way could she have the where with all to recognize a phone, much less lose it. This is probably consistent with her baseline Alzheimer’s and my suspicion of superimposed vascular changes.
@surfcity I can tell you that the CCRC did not know how to handle a couple with cognitive decline. They typically rely on one member of the couple who can help manage. For my parents, it was either 24 hour aids (very expensive on top of monthly CCRC fees), memory care, or their present situation. When I moved them, they were both walkers and talkers but unaware of time, place, and could not make executive decisions. There were other walkers and talkers in memory care when I visited. The care home I moved them to (called different names in different areas of the country. Search board and care, family care home, personal care home…) is great for me and I think the best of the 3 alternatives. It is a mile away from my house and a room and bed they share. Meals are family style and although technically an ALF, the staff/resident ratio is 2/6 and they can manage more and better personalize care. I do pay more for my dad’s special needs.
I was “lucky” as this care home newly opened when I searched. I would never have found it if not for this board telling me about the “board and care” option. They are not all good. You need to find one that is certified, meaning inspected and monitored by the county. My parent’s facility goes above and beyond with 2/6 caregiver to resident ratios instead of the 1/6 legal requirement. There is just one caregiver on night shift. There were some growing pains. What I don’t get in exchange for more personalized care, are robust group activities such as music therapy which my mom enjoys.
GTAlum, with Alzheimer’s I can understand the severity being worse. As for phone, in the last 10 days, my mother has tried to use hers to control the tv, move the bed up and down, and has called me on the phone to tell me she can’t find her phone-perhaps by pushing the button by mistake. She forgot how to call for help (button around her neck). This stuff is new, and is kind of another step toward where your mother is.
You were smart not to start hospice. I had the same vibe when we had the first discussion with a particular one but at the time we thought we were dealing with a cancer. I just took her off and now the AL and MD want me to try another one. Everyone is nervous about her being alone in her apartment though I am there every day for a few hours.
The “board and care” option sounds so much better than a larger AL. Moves are hard. It takes a few hours for my mother to forget where she has been living, but as you know, the effects are still confusion and disorientation.
I have stopped hitting my head against the wall with AL and accepted that we pay for services that aren’t really provided. I didn’t make a big deal about 4 med errors either. Gotta yield. But hitting my head against the wall with hospice AND AL was too much. My brothers couldn’t understand why I stopped hospice but thankfully trusted me.
@surfcity my dad’s Memory Care here is much different than you describe. There is a range, but almost all of them walk and talk. Most are confused though.
Argh I have spent the last two weeks either sleeping on a loveseat in my mother’s AL apartment or going over at all times of day because she cannot remember to keep her wound packing and bandages on. Signs don’t work, phone calls don’t work, and the message only lasts for a few minutes in her brain. We have AL and had hospice aide and nurses but I still end up being the one to tell her to keep it on every few minutes!
I suspect I am being told memory care isn’t a good option because memory care is full and the regular AL has 18 vacancies, and my mother chose an expensive room so they need her.
I suspect hospice too her on for money reasons as well. Two other hospices say she is not eligible.
Gee, I am getting so I don’t trust the intentions of anyone!
She just took the bandage off again. I am going to have to yield to reality on this too. A bump or a scar is fine and infection unlikely so ending my wound vigil today!
@compmom, would it be possible for you to bring in something more comfortable for sleeping than the loveseat?
@compmom I don’t trust anyone either. Everyday AL tells us something different, whatever suits the narrative for the day. To me it’s all about the money. My mother’s wound seems to be her biggest problem too. She does keep the bandage on because she can’t move at all! Sometimes I just have to let it all go and be confident that we have a lot of care in place. We’ve done the best we could for her. Today I just came from visiting her and it’s not one of her best days. It makes me sad to see her like this, but we’ve done all we can for her to be safe and clean and fed. I have to let it go today and try to enjoy the day with my family. I’ll go back tomorrow.
@GTalum I don’t think there are B&C places near me, (Philly 'burbs) because I have searched after you mentioned them earlier. Do they have nurses typically? Mu dad is a type 1 diabetic and so I need to have a place with an LPN at least to manage insulin (I believe this is a state requirement. Obviously I manage it when he is at my house and I am not a nurse, but I think the state may require any licensed place to have a nurse).
I thought I had researched everything about senior living, but reading here and talking to others makes it clear that there aren’t always good options. Their current facility’s memory care is very small, only 20 beds or so, and I think it is mainly folks from AL that decline and the family doesn’t want to move them.
They had previously lived in a larger CCRC that had great IL and great SNF but the personal care/AL was not good; I had to move them because that is what dad needed. Ironically they may have been better staying out, except that was an hour away from me.
@compmom - do you work outside the home? I am amazed that people are able to provide so much hands on care for their parents. And I know we are extremely lucky to be able to afford a nice AL and temporary private duty aides. What do people without these resources do? My father would not be able to live with diabetes without 24 hour availability of med management.