Stage 4

Karl38

I have posted before and your responses are appreciated. We are 83 and 84 and my wife has ALZ. We are about 6 years down this road and my best guess is that she is in Stage 4. She is a wonderful person and doesn't realize she is sick. She is happy.

However, she is totally dependent on me. I make all decisions, plan shopping and cook meals etc. She is happy with this. Her short term memory is gone and cognitive skills mostly gone also. On the plus side she still recognizes our friends and family and she can take walks in the neighborhood alone and not get lost. She lives in the moment, doesn't recall past events (even hours before) and doesn't think about future plans.

She likes our home and doesn't 't do well in new environments; gets very confused. Hates the suggestion we move to a CCRC.

I'm guessing stage 4 will end soon and I'm trying to have a plan for it. Not sure how much time I have. I know everyone is different but if there is anyone out there who has experience with a situation like mine, and has anything you would be willing to share, your comments will be appreciated.

Quilting brings calm

My mom has been in stage 4 for over four years. The average is two.

M1

Hi Karl. Do you have a backup plan in place, either for her getting worse in the future, or if something were to happen to you? That would be my major concern. I think your plan for a CCRC is a good one, but you are probably going to have to do it against her will and without discussing it with her. That's very hard of course, as it is obviously something you would normally approach as a joint decision, but she can't make rational choices any more. Most moves for someone with late stage dementia are best accomplished with no advance discussion and no notice. Do you have children or friends who can help, such as distracting her or entertaining her on moving day?

White Crane

Hi, Karl, your plan for a CCRC sounds good. You are the one who is going to have to make the decisions going forward as your DW is unable to. I know this is hard as you've probably always made joint decisions. Have you visited any CCRC's in your area? If not, now is the time to do that and have your plan in place. Wishing you the best going forward and please keep us informed.

harshedbuzz

@Karl38

It does sound like a CCRC could be a great option under your circumstances. Given your ages, you need a robust Plan B with an if/then decision tree to manage each potential eventuality.

Where you want to be if your wife took a sudden turn for the worse after a fall/broken hip scenario? Who is your backup if you had a medical emergency and were hospitalized for a week? What if you were among the 1/3 of caregivers who died before their LO?

My aunt had a presentation like you describe-- she progressed very slowly (I'm guessing her DH saw signs of cognitive changes by the early aughts around the time he died/she passed in 2018) and never lost her sweet disposition. Her husband's unexpected death propelled her into a noticeable stage 4 for a time, but a stroke rendered her more stage5 with a hint of 6 overnight. This meant she moved to a CCRC's MC where she initially was included in the AL activities and trips. She did very well there.

My uncle had not made plans for this eventuality, so it was a scramble for family to obtain guardianship, oversee her medical care which lapsed after her DH died, find a MCF for her and deal with all their stuff and estate. It was a lot, and we were constantly second-guessing ourselves in decision making in trying to honor what we thought would be their wishes. Please don't leave this for someone else to sort out.

In your shoes, I would strongly consider a CCRC as it would provide a safety net for you both. You could start in a IL or Al depending on what suits you-- near me, one big difference is the meals and housekeeping provided. In some places you can add this on to an IL cottage or apartment. When you tour, check out all levels of care offered. In touring I found sometimes the IL and AL are amazing, but the MC and SNF are kind of an afterthought.

HB

Karl38

Thank you all for your comments. Sorry to be so long in responding.

I'm finding we can no longer get into a CCRC since my wife has ALZ. Best we can do is move to an assisted living apartment where she would be looked after if I can't do it. We have visited a few and the thought of living there is depressing (for me). Now I'm planning to stay in our home of 52 years and bring in help as needed. Right now I can handle it. When that no longer works she will have to go into a memory care facility. Have others had to make this same decision? Would like to hear from you.

ButterflyWings

@Karl38 I am sorry you are in the same situation as me and my DH. He is your age and I am younger, but feeling incredibly inadequate many days. I definitely feel 2 decades older than I actually am. Sleep deprivation, stress, secondary PTSD etc. are all a part of our caregiving lot. Yet we are getting through this nightmare disease, one day at a time and are now in early Stage 7.

My LO, like your DW, is fairly easy to care for. This was not the case in Stages 4-5. So, my hope for you is that at least in terms of keeping her safe and calm, maybe the worst is behind you. What I can say is I had elderly relatives who did exactly as you are planning, and she was able to keep her DH at home for the duration when both were in their late 70's early 80's by bringing in help for many hours in later stages and eventually 24/7 I believe. He was bedridden toward the end due to some other condition initially and became a 2 person assist for some things.

I am planning to do the same with my DH. And so far, we are managing though the progression itself is just rough.

What I am concerned about in your situation is her walking alone. I know my approach is "nervous Nellie", but I really, really believe in "better safe than sorry". You know with this disease one of the worst things is that we never realize something is "the last time our LO could do that, or we could do that together, or the last time they could do it safely". We learn they can't anymore, once they fail.

Her getting lost the first time is too late as it could be a total tragedy and not always are our LOs found OK. That could happen tomorrow. So please forgive the scary facts in this article, but this case has been in the back of my mind since I learned about it here on these boards and it made me extra diligent with my wandering LO to just never, ever let him out of my sight since Stage 4. (Caregivers/HHAs are given the same instruction now that I have help 40 hrs/week).

To all of us here, I say "don't let this happen to you" (or your PWD LO). A walking companion is in order. Maybe a volunteer?

https://lamag.com/featured/nancy-paulikas-disappearance-lacma#:~:text=Police%20still%20do%20not%20know,months%20after%20she%20had%20died.