New to ALZ Site - Caring for LO With Dementia

BatsVix

New here to the community, caring for a parent with severe dementia and their spouse. LO had a serious fall a few weeks ago, resulting in a brain bleed. Another fall or progression led to acute/chronic bilateral brain bleeds. LO had urgent brain surgery to alleviate this. Spouse is finally waking up to the fact that LO w/D needs more care, fall prevention and social interaction. We may need to sell the 2 story house and find a patio home, have them move into a senior area condo, a retirement home or assisted living. LO has had dementia for well over 10 years, and their memory for new words or actions lasts a minute at best. A speech therapist gave us a workbook for repeating words, organizing sentences and basic math. LO w/D can shower, but does so very little, like once or twice a week. I guess I'm just struggling to get my other parent to accept the reality of the situation, and to get off their rear and actually support their partner of 55 years. I mean, which is easier? A smaller house of course. But what is safer for my LO w/D? A retirement community or memory care place. We a have a policy for long-term care, but we don't know what the future holds. I want them out of this huge house and into a smaller place without stairs, even steps to the garage. Any help or ability to rant is appreciated!

H1235

Welcome. Is there a DPOA? At this point it would probably be good to have one for the parent with out dementia as well. Is the parent without dementia still driving, paying bills and managing money? How dependent on you are they? If you or a sibling or taking care for all these things, I think you just tell them how it needs to be. Do you think their doctor might help. I assume with the brain bleed and all that has happened it is going to be pretty obvious that the pwd needs a different living situation. Sometimes they take things better coming from someone else. Has your lo w/d been released from the hospital yet? You might try taking to the hospital social worker(or something like that). They may be able to get doctors to convince your parent without dementia they need to make changes. They may also be able to give you suggestions on the best environment for them. I wouldn’t think they would want to send your lo home to an unsafe environment. You have a lot to consider. Selling their home only to buy another that is still going to be a lot of work probably doesn’t make the most sense. Your pwd is only going to get worse. You should be looking to future needs not just the current situation, but I think you realize that. To complicate things facilities can sometimes have a waiting list. I have heard of facilities that have an Al wing and a mc wing. This might be a good arrangement. I hope you can find a solution.

SDianeL

welcome. Ditto what H1235 said. I think the best situation might be for the PWD to go into memory care. It provides skilled 24/7 care specializing in dementia in a locked environment. The important thing is their safety. If you could find a facility that also has assisted living for the spouse in a different wing then they can visit. If you have a DPOA check the wording to see if you can make the decisions for them. I doubt you will be able to care for an elderly parent and their spouse with dementia without help. The PWD will soon require 24/7 care. If they remain in a home you will need to hire help. Come here often. We understand what you’re going through.

harshedbuzz

@BatsVix

Hi and welcome. I am sorry for your reason to be here but pleased you found this place.

I had a similar situation where my PWD was the easier parent in terms of making the sensible choices for them as a couple. I couldn't even force an evaluation for dad for a decade. What I learned the hard way in my situation was that the best approach was supporting the caregiver rather than trying to foist my solutions on her.

A couple of thoughts—

Is all the legal paperwork in place in terms of POAs? PWD should have a successor agent (perhaps you) and CGP (caregiver parent) should have someone other than spouse as their proxy.

Successor agent should be up to speed on all things medical and financial in order to step in the role seamlessly. They should also have a solid Plan B for PWD in terms of care going forward should CGP be unable to continue to do illness or death. One third of caregivers pass before their LO. To that end, I toured MCFs and had a few picked out for dad if I inherited his care.

You have 2 parents, and both their needs should be considered.

IMO, the place to live in for CGP is the place they'd want to live in Stage 8 (after PWD passes) so long as their health holds.

Assuming the CGP is fit and capable of managing their home, it's their call to stay there or not. In the context of dementia, the spouse loses so very much because of the disease— companionship of a partner, friends and family who pull away, the retirement they'd planned for, etc. If the home matters to them, perhaps you should be more focused on making that work.

Stairs can be gated off, doors to spare bedrooms, garages and basements locked, a downstairs half bath is useful even better if it can be expanded to include a roll-in shower. Aides can be hired to give CGP some time to run errands and have some "me" time.

Placement in a MCF for the PWD is a good option too. Dad went into MC in stage 6; it was the right choice for them. Mom really, really didn't want to move into a care community and loves having her own home. The other piece is that when I looked into the very nice CCRC to which I would want them to move, dad would not have passed their cognitive screening. Many CCRCs will allow a PWD to remain and age-in-place, but they require new residents to be cognitively sound. YMMV.

Two additional thoughts-

IME, cognitive therapy done with a SLP is kind of pointless in later stages. Often these kinds of activities only stress a PWD out.

Falls happen. AS PWD progress in the disease, they happen a lot. While it's still critical to make sure a home is free of trip hazards like area rugs, poor lighting and cords PWD are still going to fall.

Good luck.
HB

BatsVix

I appreciate all of the insight. The plan is to release my LWD from hospital on 9/15/2025. Yesterday, we had a care team/family meeting, and I felt hopeful about the outlook. Today, however, I feel awful. My LWD is full of anxiety, and the meds aren't enough. They're working on it, but she can barely talk because she's so afraid. Being in the hospital and being cared for to the point of wearing adult diapers and pick-wicks is so traumatizing to her. We are at the point of asking yes/no questions today, as she can't handle more than that. I don't know if the swelling in her brain is worse today or what is going on. Or really, if it's just trauma from being cut open. I told her she had brain surgery, and she jumped and moaned. It was a pure trigger response to trauma, so those words aren't being used today.

While the idea of moving my LWD and my other parent to a home might cause further decline, the fact is, they cannot stay in a house where the master bath toilet is 60 feet from the bedroom. My other parent cannot be in an office room on the other side of the house. They cannot deal with having a yard, much less stairs from the garage to the house. They need a condo/apartment situation, MC living or something simpler. My other parent is simply physically incapable of handling a lot of the care required, so in-home care is a must until my LWD recovers.

Today is just a huge struggle and I can barely keep it together without crying. I am going to try to take a walk and go to lunch and do something for myself today.

If there's virtual support group meetings, I'd like to do that, because I feel like verbally commiserating with others helps me the most.

SDianeL

https://alzconnected.org/discussion/comment/252802#Comment_252802

call the toll free Alzheimer’s Association number at the top of the main page. They may have a virtual support group. 💜🙏

SDianeL

https://alzconnected.org/discussion/comment/252911#Comment_252911

800-272.3900 is the toll free number