It's time for my husband to go to a group home. Even though this is what I wanted, why am I now hesitating when a room is available?

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It's time for my husband to go to a group home. Even though this is what I wanted, why am I now hesitating when a room is available?

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It's time for my 76 year old husband to go to a group home for his care. I am no longer able to care for him - in a safe manner - at home. He was diagnosed with Parkinson's disease in 2002, dementia in 2014 and clinically blind in 2017. It has been challenging for both of us. Over the years, we've done the best we could. I looked at both group homes and larger facilities and determined along with both of his doctors (PCP and neurologist) that a group home would be best for his wants and needs. After much discussion, he has agreed to move to a group home (he has fought it every step of the way). He said I've worn him down and has agreed to the transition. We both looked at the group home with the owner, viewed the room and interacted a bit with the caregivers. He has agreed that this is the home he will move to. A room will become available August 1st and it's time to give a deposit to hold the room and get the paperwork in order. Why do I feel so guilty now that the time is here? Just yesterday there was a incident with him at home and I said to myself, I really can't do this for much longer. Today, I received notice of the upcoming availability. For some reason, I'm hesitating. This is such a huge decision. Neither of us has any family left, so the decision is mine. Has anyone else gone through the hesitation process in their mind at the last minute? If so, can you share some ideas that ultimately made you decide one way or the other. The group home has been extremely strict about Covid 19 and they have not had any cases to date. I've not been able to have any help come in since mid-March. Thank you.

Care Decisions Parkinson's Disease Spouse

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Lexi, how did it go today? ((((((hugs)))))))))

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Guilt is a very natural and almost manipulating emotion. I am not down on guilt as much as some others are as it may in other situations guide us to a right decision, for example you would feel guilty cheating on a spouse so you dont

But in this case, the facts seem to be you have cared for your husband as long as you could as well as you could, and in this case I think the guilt is a "lie" of sorts.

Not to say this wont be hard. Who wants to put a loved one in another place. But it seems to be the best choice, based on what I understand.

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You are likely hesitating because you feel some guilt. Step back for a minute. What level of care does your husband need and deserve? Answer. Can you provide that care? Answer - NO. Who can - the group home.

Now - does this mean that you shut the door and never see him again? No - it means you will be his loving wife and friend - you will visit, you will help him, you will advocate for him - you will just have a higher level of care and more hands to help. He deserves this.

It is not easy. Bless you both and report back how it all goes?

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Is a part time home care aide an option at all?
would that help?
Or is it best and safest for both of you for him
to be there.
How often do they have openings become
available on average? (once a month, once a year?)
What is the visiting situation, during
COVID?

Also has he seen a geriatric psychiatrist? They
are very good at using medications to balance out
emotions, anxiety, anger, etc using light doses of
a variety of medications. Like a low dose of depakote
(for seizures) can work as a mood stabilizer.
Medications may help making the transition easier.

Also look up info on a geriatrics program called ACE
at SUNY Upstate Hospital online. They have a lot of
information about how to make seniors and especially
seniors with and memory or dementia problems more
comfortable and stable in new settings.
It gives care suggestions to make things easier for
them, help them feel safe and diminish or avoid declines
that seem to happen with any move, or hospital stay.
(avoid hospital ''delirium'' as it is sometimes called).

Also remember the senses. Familiar scents (air freshner,
after shave, perfume, flowers), familiar foods, familiar
sounds (tv, music, birds chirping), a favorite blanket
or shirt or robe, can all help with a sense of security
and feeling safe with what is familiar, in a new place.

Hesitation is natural on such a major decision and
change. Such changes that can be exciting, like
moving to a new place in our 20s, 30s, 40s,
has a different feel to it in our later years, as we
see it as closing a door on a large portion of our life.
It is tough to be there.
Also it means you will be living alone. Which may or
may not be appealing to you.
It is an entire spider's webs of tangled emotions, and completely
natural

best wishes

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LexiPexi - Just wondering if you looked into hiring an aid to help you with your husband’s care. Would that be an option instead of a facility?

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It's a big change for both of you. It is sort of an ending to the life you tried hard to manage with his illnesses. Since he already agreed and there is no real end in sight to getting you some help in the house, go with it. Worst case scenario is he hates it, you hate it, and you bring him back home. Putting him there right now does not have to be a permanent, set in stone, decision. Try it and see how it goes for both of you. Bless you as you make this tough decision.

Edit- forgot to mention with covid, you may not be able to visit. Ask about that. Seeing each other may make or break your decision. These are not the days of yesterday we're living in - being separated can be very difficult for both of you.

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If something or a decision doesn’t feel right in your gut...it probably means you need to take a different path .

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Imho, of course you are feeling emotional about this decision since it's a major life change. Please know that you are doing the right thing and do NOT hold onto guilt, else it eats you up. God bless you.

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You obviously have put up with a lot for some time and now you have a chance to resolve it. He has definite problems that will get worse and you cannot fix them. This is a major change in your life's daily activities and way of living and you think it is wrong to move him and you are scared of the unknown. YOU ARE DOING THE RIGHT THING. You are not a young spring chicken and you need to think of YOU and take care of YOU. You are not going to be able to do this for him much longer and protect yourself. You are doing the wisest and best move for all concerned. It is change and we often fear change and don't know how to look at it - but in this case it is a blessing. You just haven't seen that yet.

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I'm not surprised that you are having second thoughts. But this is the right decision. Your husband has been declining for years, you guys made a logical well thought out decision together, and you would be well served to stick with it. It seems like it would be best for both of you.

If you back out, it will be nearly impossible to go through this decision making process again. It's really not fair to him.

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I agree withTenacity. What if he happens to fall? How will you help him, you'll have to wait for EMT after you make the call. You know you must do this, it hurts like hell, but it was for the best for my husband to have better care than I could give him. Yes, I was exhausted, worrying if he would open the door and leave when I was showering. He started to leave and I would intercept and go with him. One day he left while I was in the bathroom. Crossed 6 lanes of a busy boulevard on a Sunday, thank God for no traffic. That with just 3 minutes of me not in the same room. I'm sure your husband is not that mobile, but for your piece of mind that with your abilities waning, you must consider taking this opening at the care facility. I feel for you, my heart even hurts as I remember that decision, but please take that opening. He will be well cared for and you can breathe easier for a few days anyway. Yes, Covid may change HOW you see him, but they are trying to make ways for loved onesto see each other, even if it is through a window. And, if you know he has dementia he will not remember his home is somewhere else. Put things in his new room from home, pictures, books (even if he can't read), throws for cuddling, something to make him feel "home". Believe me. It hurts, but reason overtakes that when you know he is safe and you can at least take a shower without being afraid he may fall while you are in there. God bless you both and know you are not alone.

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Write the check.
If you don't take this room soon, it will be gone.
There is no way to know the specific day that the change should happen.
If the change happens before there is a defining event someone in the peanut gallery may say you acted too soon.

Do you really want to wait until there is an emergency?

Don't accept his "gift" of making you out to be the bad guy.

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I’m sure you are a little hesitant but how worn out are you? How often do you realize you can’t go on much longer? Take the space they don’t come along that often. You will enjoy spending time with your husband if you aren’t providing all of his care yourself.

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There's always going to be a guilt factor - we just have to learn to accept it and try to let that feeling pass every time it pops up. The biggest concern, in addition to it becoming more difficult for you to manage his care, esp without outside help, is stated in your profile:

"If something happens to me, he will have to go in to a facility. We do not have anyone close that can supervise his care."

If something happens to you, who will be there to even know? You say no close relatives, no kids, etc. If you were unable to call for help, can he? I would think not, given his medical issues. THAT should be a major factor in the decision.

So, you know it is the right thing to do. He has agreed to it. A spot is open. TAKE it! If for some reason down the road you have regrets, you could always take him home again, but I wouldn't recommend that. If you lose that spot, who knows how long before another opens?

Look at the brighter side of this: You can be his advocate, you can visit as often as they allow (not sure what the status is on visits where you are) and you can be his wife again, not the caregiver!

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You feel guilty because you are equating a group home with love. Your love will remain the same wherever he resides and it is a REAL mark of love to be willing to go through the sadness of moving him to knowing that he is in the BEST place for him. Find ways to celebrate this new phase of his life --and yours. It is not a death sentence for either of you.

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I would second the comment by RedVanAnnie... get more information to prepare yourself for how things might be different under COVID-19.

Ask the care home how they will manage a new resident and if you will be allowed to visit. With COVID-19, sometimes new residents are put in quarantine for two weeks, and visitors are not allowed at all. This happened with my step-mom in Arizona in March - it made it more difficult for both of us, but unfortunately it was necessary for the safety of the other residents.

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I think you said it yourself - I am no longer able to care for him at home. It is always a personal decision and certainly not easy. But what happens if something happens to you - neither have family - Dr's will tell you so often the caregiver will go before the one receiving care (due to stress, neglected health, or just their time is up) Then what would happen to him?? Who would see to it he was put in a good place. Sounds like you have found a place he will be happy and you are OK with. Given his health and duration of time you have already taken care of him - maybe the best way to take care of him now (and yourself) is to place him.

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You sound exactly like me. I know that my husband, who is 75, needs to go to a home. He too has fought it but I am now exhausted and cannot keep this up. But I hesitate even though I know it is time for him to go. It is such a very difficult decision and there is so much guilt on my part. I am planning to put him in August 1st too and it is just so hard. I know just what you are going through. Stay strong.

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Please update me on your progress. Thanks, LexiPexi

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I sense you're experiencing a painful, internal struggle. At some point, make time to listen to your heart and give yourself time to feel all this decision requires, including grief. This is another stage of loss in the long journey of letting go of what was once your life together.

I see a synchronicity in recent events in your situation. An incident leaves you wondering (again) how much longer you can last. The next day you received a notice of an upcoming availability at a facility agreed upon by you and your husband. Call it coincidence, providence, answer to a prayer, whatever suits your belief system, but I think the universe is showing the way forward.

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The fact that you are hesitant shows that you care about your husband very much. You want a good environment for him so he will be safe. You also want him to be happy and I suspect that "wearing him down" does not indicate that he is happy about this life change. You may need to write down a list for yourself of all the pros and cons. Look at the list and tell yourself, "This move is will provide a better, safer environment for my husband. I will visit him______ times a week and I will contact him _______ times a week so we both feel loved."

Be aware that during COVID, many places are requiring a 2 weeks quarantine. If this applies, find ways to contact your husband daily during the quarantine.

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Another thing--if he is too much for a group home, you may have to put him in a nursing home anyway. Unless you have nursing home insurance (which most don't), this would require him to go on MEDICAID and THAT is an entirely horrible legal quagmire you need to see an eldercare attorney and get estate planning done. If your combined home income exceeds a certain amount -- it gets even worse. People actually get divorced just to get on Medicaid.

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I thought I would choke when I told my mom that the time was right for her to move. I practiced what I would say over and over the night before and when we got to her home I could feel my throat close. I said something like, "mom, it is time for us to move you to a place where we can take better care of you". She shook her head in agreement, but forget everything the next morning when we came to move her and her few belongings to her apartment. That was a year ago. The time was right: brand new 14 bed secure unit, 1/2 block away from our house. I could walk there in less than 10 minutes.

I still can feel guilty, if I let myself get into feeling sorry for her, myself or what is in store for me and my husband as we age. But when considering the inevitable progression of her dementia and ALL the ways she could have suffered by accident and my lack of commitment to her safety, I know I made the right move at the right time.

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Are you sure he is able to live at a group home? He may need a nursing home instead with more around-the-clock nursing available. Sadly, however, there is nothing safe about group or nursing homes. They still fall all the time, and if they need assistance feeding, they often get underfed and dehydrated because staff does not have the time due to too many patients. I personally know several people this has happened to their parent, so they took them out and family cares for them and they do much better. I think most nursing home falls are not reported to family unless there is injury, which also happens. I never put my mom in a nursing home.

So forget the notion group or nursing homes are "safe". I would take care of him as long as you can at home, and it may get to the point you have to change his diapers and clean him. I did that for years and years with my mom; I would have never put her in a nursing home for anything, and I did not. I had to get my bathtub ripped out and replaced with a standing shower, and a lot of hand rails installed. That was absolutely God-sent.

Another thing about group homes or nursing homes--whatever diseases are going around, they ALL get them. If you think nursing homes are safe..think again. And a lot of people absolutely hate group homes.

Lawyers will advise family to VISIT OFTEN -- even daily--and do a skin assessment to make sure they are cared for. Staff will know they are being watched. With COVID you CANNOT do this. So that makes them even more vulnerable. PS: If one staff member--and some people do not get symptoms or very mid--gets they CoVID, all the patients will catch it.

DO NOT put a "nanny cam" without permission in a facility--nursing homes are private property and you can get in very serious legal trouble including violation of HIPAA laws which can lead to a prison sentence and enormously huge fines. The only place you can legally install cameras is in your OWN home. https://www.elderlawanswers.com/can-you-put-a-surveillance-camera-in-a-nursing-home-room-16956

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I agree. Group homes are nothing more than unsupervised adult warehouses, although some are better than others. They have terrible, cheap food, utilities often go off for lack of payment. The last one my friend was in was shut down by fire department for many code violations. And they are expensive. If it is your only choice, go there everyday and look closely at what is happening. I’d begin the process for Medicaid now.

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I will be in the same situation in probably the near future. I will have to make the choice of going to facilities which will provide my husband care or hiring someone to do it in our home. While I know I can't do many things on my own, it is best to do what is right for the individual. My home is set up for handicapped people, however, a home could be better in many ways as I would not be 100% doing everything. If o have an appointment I must hire someone to come stay with him, if the help cannot come in for whatever reasons, I now have to cancel my appointment. The care providers health tends to go downhill when taking care of someone full time. You are doing right by him to place him in a care facility. It isnt easy, but it is not what is best for your brain, it is what is best for the person whose health is jeopardized to ensure safety and care.

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Very, very true. The caregiver cannot tend to his/her own needs. And, if they do, someone will come down the pike and call caregiver "selfish." I've had this happen and it hurts so bad. I wanted to ask "So, if I'm in the hospital due to a condition that may have been preventable, you'll step in and care for LO?" As it was, I ended up in the ER and I could directly and/or indirectly trace it back to my LO, other family as well, and the constant demands. Currently, I am dealing with something (not life-threatening, thank goodness) and at least part of the situation could have and possibly should have been dealt with years ago. But I put it off in order to better meet others' needs. Caregivers are still human beings, but that seems awfully hard for the person receiving care to acknowledge as most don't seem to think they need much help at all. And then when other onlookers start putting in their opinions on how things should be going (OK - what can I sign you up for?), it becomes unmanageable.

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When an opening came up in a memory care facility for my husband, I wasn’t quite ready. When I asked the neurologist about taking it, he said, “I would, it’s not going to get better you know.” That made me think, I guess it’s time. My husband loved it and acclimated immediately. He is very social and liked being with people. I was able to enjoy spending time with him without the worry of showering, will he wander, etc. He’s in a nursing home now under hospice care.

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Heart breaking decision.
Many decisions we have to make are heart breaking.
I always said my number 1 priority was safety.
If I could not care for him safely, either his safety or mine I would have had to place him in Memory Care.
You have made the best choice given the circumstances the fact that he also realizes that this move is necessary is wonderful. I can tell you it may not always be so. He may forget that he also wanted this or knew it was necessary. Do not let that "guilt" you. You are doing the right thing.

Everyone hesitates when making a giant leap. But if those first steps were never taken we would all be crawling, "explorers" would never have ventured past the Mississippi, we would not know what the surface of the moon looks like.....

You are doing what is best and safest for him.

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You feel bad and hesitant because you are doing one of the hardest things that any of us has to do.

It is okay to feel bad, but you can not safely care for him any longer and that is why you are moving him.

I am sorry but he is being a selfish knot head with his words. If he is worn down he should be in your shoes. They truly get to a point that they need a village.

You will still be very involved in his life and I promise you that you will be so happy when you can do things that enrich his life instead of just being his 24/7 caregiver.

He will probably try to guilt you, he's already started, so be fully prepared to hear how miserable he is and how bad things are. Take it all with a grain of salt, watch from a distance to see for yourself how it is really going. I found that the facility was always saying great, my dad was always saying terrible and the truth was in the middle, it was all okay and life still happens in a facility. Some good, some bad and some just days.

Be sure and give him and you time to get used to the new situation. Everything is going to be a challenge for about 6 weeks and then he will start settling in.

Good luck and get that deposit in.

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Your husband's saying he agrees to the move "because you've worn him down" must add to your feeling of guilt. Will the group home let you visit during COVID? It would help to be able spend time with him but to let others take over most of th hands on care and supervision. Wearing yourself to a nub would not be helpful to you or your husband.

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My personal experience with a relative is that all the careful plans made can come crashing down on the day of the move. Alternate options can present themselves at the last minute, and the result can work out better than the plan. With excellent care, the relative can improve! Refunds were made in full.

Even so, everyone was in agreement for the plan A, but we went with plan B and got a better result.

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What?

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I know the feelings and how difficult the decision is to make.
I was at that same place just before Luz had her last attack of not being able to walk. I explained it all to her and we both felt really bed about it.
Unfortunately she sis not live long enough for me to go through with it.
You feel just like I did. I never wanted to be separated from her but I knew it would be for the best but it never happened.
Visiting would be the best follow up after placement.
Excuse me now. My screen is getting blurry.I wish you the best.

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OldSailor - I could tell by what you wrote that Luz was your soulmate. Not everyone is that lucky to find and share lives with someone so special. You and Luz shared a life journey together till the end. How blessed you both were. And I am very happy for both of you.

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It's time for my husband to go to a group home. Even though this is what I wanted, why am I now hesitating when a room is available?

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