Have I made a mistake?

Daughter of a Marine

I'm hoping this will make sense and that someone can help me with my thought process. MY DH, 76, was diagnosed with dementia 13 years ago. It progressed slowly until his back surgery when he was under general anesthesia for 5 hours about 5 yrs ago after which he was never the same - hallucinations, paranoia and nonexistent short term memory. His confusion is extreme and he is now living in his own altered reality, believing he is still working and at times that I am a co-worker (truck driver). He jabbers on, making no sense, can't find his words and will do things like refusing to come inside during a downpour, putting strange things into the microwave and in general, getting into things that require me to monitor him 24/7. It was physically and mentally exhausting and we as a family began exploring MC facilities. I have struggled with this decision due primarily to the fact that he is physically strong and healthy. We did place him in MC on July 2 and he has not really asked to go home or demanded to know why he's there. But as i look around at the residents nodding off in their wheelchairs and some unable to feed themselves, I question that he belongs there and am asking myself if I couldn't have kept him home a bit longer. He does not wander and while he's had some accidents, is not consistently incontinent. Also, our financial resources are limited and the current private pay memory care situation concerns me that we could be depleting these resources now and having less when truly needed later. I am tortured by the thought that he should still be home with me and that I placed him prematurely. I welcome your thoughts and recommendations as I continue to pray for guidance and peace. Thank you!

M1

You did not place him too early. There is turnover in a MC facility, there will be new residents constantly such that the mix always changes, don't be put off by what you see. Honestly it may make more sense to have him in the facility now and if you must, bring him home later when he is on hospice and easier to handle. That would be my thinking.

GothicGremlin

I agree with @M1 There is indeed a lot of turnover in memory care, and you'll find all stages there. My sister was fairly high-functioning when I placed her, and like you, I questioned whether I placed her too soon. But I didn't. Everything you describe is the same as my sister - hallucinations, no short term memory, confusion, but also physically healthy. My sister did well in memory care, well, as well as can be expected, but I never regretted placing her there. She got great care there, better than I could have done at home.

If you're able, I'd leave him in memory care now, where there are activities and caregivers to look after him, and then bring him home when he's ready for hospice.

harshedbuzz

Daughter-

Seeing a LO in a setting with people who are impaired or challenged in some way is always hard— whether an adult in a MCF or a child in a special needs classroom. In both situations, it's human nature to see your LO through rose-tinted lenses as them "on their best day" and surrounded by people who are more capable and able to scaffold for them. In both cases, care-need drives placement.

Given your description of an "Energizer-Bunny" presentation of dementia, it would be nearly impossible for a single person to keep him safe 24/7— that level of care is best delivered in a dementia-informed setting by well trained and rested professionals. Things may change as his dementia progresses and you may be able to bring him home with help.

The level of hypervigilance needed for this kind of dementia is such that it is likely impossible for you to look after yourself and your needs. My mom placed dad too late for a number of reasons— money, societal expectations, depression-driven inertia. She ignored her own health, let some critical appointments slide and prescriptions go unfilled even with me helping and 15 hr/week of HHAs. Long story short, her self-neglect resulted in the loss of vision in one eye, which led to the loss of independence around driving and taken away the stage 8 she wanted for herself as well as mine.

HB

White Crane

I hear your fear that you placed him too soon but after your description, it sounds like you placed him at the right time. What you describe sounds exhausting. Please give MC a chance. As others have said, you can always bring him home later.

mrahope

We placed my DH in MC about 3 months ago, and I, too, wondered if it was too soon. He could handle all his ADLs, but was often wearing clothes that were less than clean. He "talked a good game" if the subject was something he had prior knowledge of. But he was so aggressive and full of rage that I had begun to sleep behind a locked door and kept my keys under my pillow and my phone within an arm's reach. I couldn't sustain it mentally. Don't know if he's still in the "honeymoon" phase at the MC, but each time I've seen him he seems 100% happier than he was at home. Your well-being counts, too.

fmb

My DH had to be placed in an ALF more for physical reasons than dementia-related symptoms. He is still a gentle, quiet person and never had the more difficult to manage behaviors that some PWD experience. When he was first placed, I was horrified and appalled at the condition of some of the residents. Through the past 9-1/2 months of visiting I have come to come to develop relationships with a few of the residents and truly grieve when they die. Now that DH is in mid-Stage 7, he is one of the residents who causes others to look at him with pity or avert their eyes. In the special needs wing, he is one of the longest tenured residents. As others have said, there is fairly steady turnover in these facilities.

The other factor that caused DH's placement was my health and well-being. I was perilously close to a mental and physical breakdown. Neglecting my needs has permanently damaged my health. Even if his needs could have been met in our home, I could not have provided the care he needed even with outside help. As has been said here many times before, you cannot let this disease claim two victims.

Money is nearly always a concern when placing a LO. You don't know how long they will live or whether they will need an increased, more expensive level of care. As others above have said, you may be able to bring him home under hospice care later when his symptoms are easier to manage.

I, too, pray for guidance and peace and the strength to do what needs to be done each day. You are not alone.

LindaLouise

We placed my DH in MC about 2 1/2 months ago - he is 68, in good physical shape, but can be very agitated, doesn't sleep, was constantly trying to leave the house and would be upset about not driving. I had no plan to place him when I did, but my kids pointed out that they didn't want to lose both of their parents. I could see the toll the 24 hour vigilance, the increasing aggressiveness and agitation, and the not sleeping more than 2 hours at a time was taking on me physically and mentally, so I did what I didn't want to do and placed him. It just seemed too soon but the life we were living was not working for either of us. Plus, my adult children all have demanding jobs and very young children- if anything happened to me, I knew that none of them are in a position to do what would be needed to care for him and find the right facility to place him I couldn't do that to them and knew I had to find the right place for all of our sakes. I visit him almost daily, (some days are definitely harder than others), miss him and the life we had so very much and wonder how on earth this happened to my amazing DH of 47 years. I too, feel scared and stunned about the cost, and wonder why on earth a disease like this, with the level of care and support needed, is NOT covered by Medicare! It does feel like those of us supporting our spouses with Alzheimer's can't catch a break - it takes our partners, our health and whatever savings we worked to have for our golden years. On top of that, the grief we feel when our spouses are no longer home with us - no one really acknowledges that heartbreak as our spouses have not yet passed. Sorry for a bit of a rant here, but sometimes the unfairness of it all just feels like its too much…

ghphotog

You did the right thing. The residents are all in different phases of the disease. Some very severe and some that are in earlier stages. The can walk, talk, eat and for the most part take care of those things on their own but they can't survive on their own and every family has reasons for placing their loved ones. There is no judgement or guilt for placing them during any stage so please understand you did what you absolutely had to. The choice was made for you and it was the right one.

SDianeL

I had no choice but to place my DH in January due to my breast cancer diagnosis in December. I still want to try to bring him home but know I'm not physically or mentally able to care for him anymore. I'm 76. He's 79. In just 7 months he's progressed from Stage 5-6 or Stage 7 and is now fully incontinent & bedridden. Go visit him often and see if there is a place where you can visit that's peaceful & separate from the other residents. When my husband was in a wheelchair I would take him to a nice screened in porch where there were no other residents. He liked it and so did I. Do they have activities that he can join? Can you have meals with him? Some families take their LO's for the day but I was worried my DH wouldn't want to return to the facility and I didn't want to cause him stress. Praying for your peace in knowing you did the right thing for you & for him.

Daughter of a Marine

Thank you all for sharing your experiences and insights. I had never considered bringing him home later when he is further advanced and likely not as mobile. Much will depend on how long the funds will hold out and how long it will be before he begins to exhibit physical deterioration. You are all in my prayers as we continue to navigate this road none of us chose.

ButterflyWings

https://alzconnected.org/discussion/70165/have-i-made-a-mistake

The “strange things in the microwave” alone, could be disastrous. One house fire and tragedy beyond repair could occur.

The only choices with dementia caregiving seem to be “what is the least bad” option and “what can we not afford not to do”.

ButterflyWings

@LindaLouise

Rant away. The truth hurts as they say, and you are 100% correct with everything you said. I am thinking that it is beyond shameful, this discrimination that dementia caregiving families, especially spouse/partners are forced to suffer.

We need a strong lobby to change this, as no one dealing with the situation directly has the time or energy. But it seems to me this really is like criminally predatory in a way. Abusive, truly.

Crkddy

I am struggling with similar feelings. I'm still caring for DW at home. She is stage 7a by my approximation. I know I am close (or maybe beyond) needing to place her in a facility, but the cost is staggering and I worry about depleting our resources. The default plan is to spend down until we qualify for long term medicaid, all depending upon when DW's journey ends. What a thing to have to plan for - how long is she going to live? This is an insane situation. Is it not enough to endure this long lonely journey and watch the love of my life slowly disappear? At least it is a comfort to know there are others on this same road, though at the same time it breaks my heart to know there are so many suffering. My heart goes out to all of you.