Can Anybody Relate to This?

WIGO23

When I think about placing my DH into some level of care facility these thoughts come to mind:

1. I won’t be able to as long as he still knows me .
2. I can only place him if I dislike who he has become and no longer want to care for him.
3. I think I am an awful person for hoping one of those things happen sooner not later.

DebrahS1

Dear WIG023,

I can. I relate totally to thinking all three of these things.

I've come to realize that all of these thoughts are born out of finding myself totally exhausted and drained and feeling like there is no end in sight.

It's a terrible place to find yourself, I know how that feels and you have my deepest sympathy.

Just try to remember that you are not a terrible person to feel any of these ways. You are most likely an exhausted and drained human being being stretched to your limits.

There are many people on this board, I'm sure, who have felt this same way.

Forgive yourself. Be compassionate with yourself. You are not an awful person - you are a person who needs support, compassion and understanding as much as your DH does.

Please know that someone is out here who understands and cares.

Debrah

sandwichone123

When I started out here I had thoughts about "tests" for when I could put dh in memory care. What I found was that over time those tests became less important and other aspects of life had their votes and I ended up putting him in care much earlier than I had first thought I would.

Sparklebutt

I can relate Wig023. You’re not an awful person at all. All of our feelings day in, day out are not good or bad. They are to be felt, expressed and then let go. That’s why this site is so great. I think one more thing I would add to my list is if DH gets too aggressive and agitated that I can’t handle him. Thanks for sharing.

Beachfan

I placed DH in a memory care facility in November, 2021. He was there 17 months before he passed in April, 2023. If there was anything “easy” about placing him, it was the fact that he did not know me, he did not know our kids, he did not know where he was most of the time, he was just here, but he wasn’t here. He was not aggressive, he was not incontinent, (I wouldn’t allow it), he did not wander. I cared for him at home, 24/7, for 11 1/2 years. I investigated a memory care facility for a 30 day respite, just to get a sense of what it was like. On the day that we finalized the plan for the 30 day respite, my three kids announced, by way of their spokesperson , my giant retired Marine Colonel son, that after 30 days, we were not bringing pop home. They argued that I didn’t go anywhere, I didn’t get to see the grandkids’ sporting activities, concerts, activities; I did nothing but care for DH, forfeiting any semblance of a normal life. Although it saddened me, I knew in my heart that they were right and that if I carried on in this manner, I might come to resent DH and what his loss was doing to me and our family.

DH was well cared for, content, and well loved in the memory care facility. I was able to enjoy my grandkids again, and enjoy being his wife and not his caregiver. You will do what you need to do, when the time comes. And don’t worry about what anyone else thinks. I wish you well.💕

wose

That hits home with me too. My DH still knows me most of the time. Sometimes he thinks I’m his daughter, daughter in law or niece. What @Beachfan said hit home also about resentment. My DH is quite nasty more and more. Sometimes I wish it would all be over and I feel even worse. I keep telling myself I could make it another year then another. But, I’m not so sure anymore. The falls started and I can’t get him up off the floor. He won’t eat much anymore and he hides his incontinence from me. My mental and emotional state has me very worried for myself also. The stress is so overwhelming for me I fear a stroke or heart attack. But still, I can’t do it yet. I understand completely and I’m so sorry for you. Big hugs coming your way 💕💙

Barbie300

Statistics say the main reasons given for moving a LO to MC are incontinence and wandering. Seems like aggressive behavior could also be a trigger.

SSHarkey

Oh my yes! Every word!

Lilydaisy

I am ready to move ahead with MC for my DW. I have benefitted from all of the messages others have posted. In the end for me, it has become primarily an issue of safety for her (out of control anger and agitation, losing balance, close to wandering when angry). That's enough.

After reading one comment someplace, it noted that one of the reasons some caregivers don't do it is a feeling of isolation, not because of being alone after, but because adult children may not agree. That is my situation.

watercolor

Does anyone use their own IRA money to cover MC?

Dan520

I could have written that WIGO23.

Especially today. Today is the first time that I feel like our team is no longer a team. So sad🙏🙏

sandwichone123

https://alzconnected.org/discussion/comment/284429#Comment_284429

Hi Lily,

I think when the family does not agree it's particularly stressful. With my dh I was totally on my own, as his family did not care to any visible degree. In some ways that was hard, but in some ways it made it so much easier. I'm afraid you're going to have to make the best decisions for her, even if the family isn't 100% behind them. The people that are doing the work (and have DPOA) are the only ones who get a vote.

At some point you may decide it's best to share only the barest of updates if you're not getting supportive responses. I updated my dh's family every year near his birthday.

BPS

I think there are a lot of reasons to move to MC and some of them depend on what kind of relationship you had in your marriage. My wife has been in MC for about 2 1/2 years now. It is a small unit with only about 14 residents. Of those there are 5 or 6 that were there when my wife moved in and the others have come and gone. Some have been very difficult when they first get there but adjust. Don't limit yourself to a preconceived idea as to when is right. There are too many variables and you can get over stressed with second guessing yourself. The only ones to seriously listen to are the ones that are there doing the work living the life of a caregiver.

jgreen

https://alzconnected.org/discussion/comment/284431#Comment_284431

Hi, @watercolor

I have my DH on a ‘wait list’ for MC and will have to use money from my 401K if I choose to place him. His income would only cover half of the monthly charges, so the 401K would have to supplement. It is a huge decision for us, as what will I have after he’s gone? And living on my income if/when he is in MC will be tight!

Best of luck to you.

iowagirl1961

https://alzconnected.org/discussion/77354/can-anybody-relate-to-this

I keep

Thinking of your questions and realize I am also “secretly” hoping my deal breakers will happen sooner rather than later. I have already passed the he doesn’t know me threshold so now I think it will be wandering (some of which has started) and incontinence. Somehow it helps to know some other caregiver is out there struggling with the same thoughts.

dcare45

https://alzconnected.org/discussion/comment/284431#Comment_284431

If you are married, I'm pretty sure they look at your combined assets before you can get on medicaid if that's what you are thinking. Would be a good question for an elder law attorney in your state.

Snipe

I spoke with an attorney was told the order of asset spending should be spouse’s 401k first, then joint accounts. Your 401k is in your name, shouldn’t count towards spouse’s and should be last to be spent if you need to. Always get your personal assets checked by an elder law attorney moving forward. Your situation may be different from others. Good luck.

SDianeL

please have plans A & B ready just in case. After my cancer diagnosis I had no choice but to place my DH in memory care. I had not planned for that. Caring for someone with dementia is usually more than one person can handle. Soon they become incontinent and need 24/7 care. Unless you can hire caregivers, Memory Care facilities are better equipped to provide that care. Once placed, you are still the primary caregiver just in a different role. I made sure he was well cared for until he passed in August 2024.