Getting rough--falls and worsening Alzheimer's

Smilescountry

Hello! I have been too busy caregiving to be on here regularly, but I need to hear something from somebody. Both my parents have dementia. My mom's is mild and slowly getting worse, and my Dad's has reached a more severe stage of Alzheimer's. They have both been in assisted living since the end of December 2022. My sisters and I chose where they live because of the atmosphere, the caring staff, the opportunity for my parents to continue doing some hobbies they love that other places don't offer, the cleanliness, and more. They assured us that they could take care of them, even knowing that Dad was in the moderate stages of dementia, through the end of life as long as Dad was not violent or seeking to leave, neither which apply to him. They have beautifully decorated rooms that are side by side overlooking a gorgeous courtyard. It is quiet and peaceful, but has lots of activities when they want to participate. Now we are eight months into this experience. In the past six weeks, Dad has fallen twice because he has lost all depth perception. It happened rather quickly, and our family doctor agrees that the Alzheimer's is progressing fast. Dad remembers the local hospital and knows that his experience in the ER there was horrible. He was transferred an hour away to a regional hospital, got better care, but was away from family, which was upsetting to him. He was released to a skilled nursing facility, but the experience was so horrible that we took him out less than 24 hours later. It was his original assisted living facility that assured us that they could take him back, so he returned there and we put him on hospice due to his condition and the fact that he can receive more help that way. Then there was tonight. I got a call from my sister saying that Dad's hospital bed was broken and that I needed to call hospice to get it straightened out. Because the bed was broken, Dad was slouched two thirds of the way down with a brace on his broken neck and also recovering from hip surgery. I got hospice to get a bed there within two hours, and a hospice nurse was there in less than an hour. However, a QMA came in and insisted to the hospice nurse that Dad be moved to another facility and then gave a long list of reasons why. This person was just getting back after a three day break. I got to thinking about some of the things that have happened lately, and this person was there for all of them (Dad getting agitated, someone calling the ambulance to take Dad to the hospital because he had some pain, etc.). We chose this facility because my parents want to stay together and this was the best option. It is definitely the cleanest facility and the most caring. And I am including the memory care facilities when I write this. I know that this was just a QMA, but the hospice nurse told me that she was going to suggest to the social worker that Dad be moved. After I talked to her some more, and after the nurse read that the QMA stretched Dad's pain medicine almost 6 hours past when she was supposed to give it, she said that, perhaps, we could see if something could be worked out before we move him. I want Dad to be safe, but my parents have done everything together for over 70 years, and when Dad had to be away from Mom for nine days because he was hospitalized, things were horrible. I don't see many good options where we live. The dedicated memory care facilities are not good in our county. This assisted living facility provides lots of memory care. I think that they just need a little more staffing. My dad is certainly not the only Alzheimer's patient there, and a good number of the residents are on hospice. One of my sisters and I will be talking to the social worker and to the director tomorrow. I just haven't travelled this particular road before, and it can be very upsetting at times. Thanks.

M1

Difficult situation, for sure. Glad that hospice is involved--though it's a bit confusing, did he have hip surgery before hospice came on board?

As a general rule when a couple is involved, the level of care should be geared to meet the needs of the more advanced individual. That would clearly be MC for your dad. As you've said, wishing they had "a little more staffing" is indeed wishful thinking--most places are still very strapped for help. Sounds like your plan hinges completely on whether Hospice can fill the gaps--and I would have doubts about that. They are great for the equipment and the medications, but I doubt that they can provide the one-one-one aide care he is likely to need. For example, is he at risk to try to get up again and have another fall? Is he going to be bedbound from this point forward? What kind of supervision is he going to need to prevent more falls? Are you able to pay for private sitters? Because that's what it may take to keep him where he is.

I hope your conversation goes well and am sorry you are facing this.

harshedbuzz

I am so sorry you have this dilemma. It's hard enough to find a good fit for one PWD much less trying to find one place that ticks most of the boxes for both. You face some difficult choices around doing what is best for each without placing an undue burden on yourself.

One thing that struck me in your post was the AL's promise that they could both age-in-place. I am wondering whether that is a bald-faced lie made to extract a community fee and fill 2 rooms figuring your mom would provide scaffolding for dad and some of his care for a period of time or if there was an assumption on their part that family would provide more hands-on care or move them as your parents' needs increased. Dad's MCF offered aging-in-place but there was the assumption that hospice would be brought in as well as additional aides as needed. This was never said out loud, but it was in the contract.

When I toured ahead of placing dad, I found it difficult to picture my dad in the MC side of most facilities initially. Are the MCFs in your area badly rated or is it just they're not as appealing as hospitality-model ALs? FWIW, most PWD aren't impressed by fancy decor, it's the well-trained staff that matters.

Facing the reality of later stages of the disease in the context of your LO is hard. Imagining your LO surrounded by people with flat affects, who might smell of urine and behave in disturbing ways is gutting. Most families tend to see their LO through rose-tinted mommy-goggles which complicates this. I toured when he was stage 5 but he was solidly stage 6 approaching 7 by the time I convinced mom to place him.

It doesn't sound like your dad is benefitting from the amenities at his current facility and might need more care than is available where he is. I am of the opinion that PWD are going to fall as the disease progresses. Even frail elderly without dementia fall. Given his recent injury, he needs heal. When my aunt broke her hip in AL (which advanced her mild dementia), she not only needed to go to a SNF, she needed a sitter 24/7 at family expense. Her daughter took daily shifts with her SIL and an aunt filling in when they could because the family didn't have money for this level of care.

HB

harshedbuzz

I am seriously side-eying a QMA pulling rank over a hospice RN.

Smilescountry

Thanks for the comments. We have a few memory care units in the area, but one is under investigation for sexual abuse, another has been taken over by the state, and a third one is a little far away, so we wouldn't be able to see Dad often, which would not be good for him. Dad did have hip surgery before hospice came on board, and he had it at the regional hospital. The hospital said that he would need to have a virtual sitter and a bed alert when going somewhere else, but neither the skilled nursing facility nor assisted living could, by state law, provide those. Hospice is filling in some gaps, and Monday we are looking at paying for additional care. I talked to the hospice social worker yesterday, and she said that none of the places, including memory care or the skilled nursing facilities, are staffed well enough to take care of Dad. We were considering moving Dad, but no matter where he goes we will be facing the same problem. I am going in this morning (Saturday) to talk to the director of the facility. Yesterday, I talked to the director of nursing about several things, including the QMA. I am certain that the QMA problem has been addressed, and we will see how the QMA responds. I don't doubt that the facility wanted both my parents there, partly for financial reasons. However, it is a very caring place, and they do a good job taking care of residents. It recently changed ownership, and they are hiring more staff. We know several of the staff personally, and they genuinely like and care for my parents. We will make the move if we need to, but, with the choices that we have, it will be difficult.

Smilescountry

Just an update. Amazingly, my dad has recuperated enough that he is off hospice! We really didn't think that would happen, but it has. We have been told it is because we have been able to keep him in a place where he feels at home and is with Mom. I also think that being able to take him off pain medicines was helpful. The bad news is that, although his hip is healing nicely, his neck is not. In fact, there are actually three breaks, and none of them has healed. At this point, we are looking at him wearing a neck brace for two more years, if he lives that long. He has home health care, along with assisted living, and it seems to be working well. There is, indeed, the possibility that he might fall again. However, he and mom are happy and we are having several relatively good days with him. We had a problem with the "comfort package" that hospice gave Dad without informing me because the medications in it have serious reactions with other medications that he was on. I can now work directly with the family doctor to coordinate medicines and to make sure that we don't have that problem again.