Should I bring her home?

W.L.

Hello,

 I'm new to this forum and new to my wife being in memory care. We have been married for 21 years, both widowed after 40 years. It has been a wonderful 21 years but dementia came into our lives in 2015 and has slowly taken over.

 From what I read she would be in stage four now. I have been her sole caregiver until January of this year when I placed her in memory care. She has been there for 37 days, I know, I shouldn't be counting. Because of covid I cannot visit her but have done Face Time with her and it is heart wrenching. The last time, one week ago, she couldn't understand why she had to stay there and not be at home with me. Her last words were, "I don't want to be here'" I of course don't want her there either, I want her home with me.

 We were doing OK before that when I foolishly wanted to move to another state to be close to my kids, this upset her greatly and she could not accept moving. I finally cancelled any plans of moving but the stress and endless discussions would not go away. I finally said I think it's time for you to go to memory care. Well the focus of moving went away and memory care became the focus. Then the discussions ranged from, "is there another woman, you don't want me anymore to I don't want to go." Towards the time to go to MC she began to say, "somethings wrong, what is it?' And then we had to discuss that.

So here's my dilemma and question. I want to bring her home and opt for some in home care. Has anyone taken their spouse out of MC and brought them home?

I realize that this is like kicking the can down the road and at some time she will need to go back to a MC home. (Just a note, I am81 and she is 90). Like so many I have read about here, I miss her terribly, feel like I rushed into this as I should have stopped talking about MC and let the dust settle. I cannot help but think  things would have gone back to "normal" and I could deal with that.

One other note, we (her son and I) placed her in a MC near him because of my age but it is 125 miles away. I'm in pretty good health and able to drive when I'm able to visit her. I now wish I had placed her closer to me so daily visit would be possible. Has anyone moved their loved one from one facility to another? How did that affect the loved one?

Please, if anyone has taken their loved one out of MC and brought them home, share your experience with me.

Looking forward to reading some related experiences.

W.L.

Quilting brings calm

First-  don’t worry about the distance to the MC right now.  As you stated, you can’t visit her right now due to Covid. That would be true if the MC was 5 miles away rather than 125.  

Second- don’t make any decisions about MC right now other than to ask the MC director is your wife is in the right place.  They should know whether her behavior warrants her being in MC versus AL. 

Third-  she is only going to get worse and need even more care.  If you move her back to your house you have no help.  

Here is what I suggest, since you originally wanted to move closer to your children, and since she is 125 miles away  

Use this time to start organizing your house for sale.  Go thru items - give her kids the stuff that is hers and you don’t want to keep.  Get rid of stuff that needs gotten rid of.  Get repairs done,

Then consider temporarily moving to her sons area for a few years, and then moving to your children’s area later.  Maybe you can bring her home for a while if you live close to her sons. 

LaurenB

Wow, this is a tough situation to begin with.  I agree with Quilting that it would be a good idea to get an opinion from the MC director.  It seems from your post that you felt that there was a need to have your wife in a location other than your house, where she could receive more care.  MC provides 24 hour care.  I think that this would be what you would need at your house.  You are right to consider both your and her advanced age.  Pair that with not having the adult children around to assist.  This is a huge task under non-Covid scenarios and can be monumental with Covid.

As for switching facilities, it is possible and is done, but realize that she will need to readjust at the new facility for a while.  It might be nice to be in a location where she can be visited by both her kids and you.  Can you tolerate living in that region?  Will they help you if you end up needing assistance?  How far a way from your children would you be?

Lauren

Cynbar

Have you tried talking to the day to day staff about how she is doing? Is she eating well, cooperative, getting out to activities (such as they are with COVID lurking around)? For many posters here, they become sort of a trigger when talking to their LO who starts with the unhappy comments, yet the resident does pretty well when not reminded she is not at home. This makes memory care placement easier to accept for the grieving spouse or family. But I would not move her to another facility at this point unless there is a compelling reason for doing so, it will just be another upheaval for her. And if you are thinking of bringing her home, research and set up care in advance so you know that everything is in place and the cost is clear.

abc123

Hello WL and welcome. I'm sorry that your wife has dementia. It's an awful disease. I think the suggestions Quilting made a very good ones. Use this time to get things in order, concentrate on your home. That way, no matter what you decide, it will be easier on you. 

Also, stay in touch with the staff about how she is really doing. It is very common for a PWD to complain to their spouse/family when in reality they are thriving in the facility. I know this is hard but try not to rush into making any changes. You have a lot to consider. Please feel free to ask any questions you may have. There are many wise and caring people here who can share their experience with you. We try to support and encourage each other. You are a loving husband and you want the best for your beautiful wife. I wish you the best. I know this isn't easy.

W.L.

I appreciate all the responses on here, thank you.

 True, distance isn't the issue right now but if Covid restrictions are ever lifted it could be.

This is so fresh it's hard to even make rational decisions. I've been reading a lot of posts on here and am amazed at how many are going through the same thing.

At this stage its hard to imagine this will ever get better, I like another I read about am on an anti depressant, that is new territory for me too.

I lost my first wife to cancer, that was hard, this is harder.

 It is almost impossible to realize she will never come home and that brings me to tears again.

I suppose we all, in the beginning question our decisions, I certainly am now.

The people at the MC are encouraging as far as her adjusting and say she seldom mentions going home, its when we Face Time that it really comes to the surface, then we both cry. Does this ever get better? I have a friend who's husband is worse than my wife and she is caring for him at home, she 90 he 91. She said she had to decide. was she better with him or without him. She chose with him, my jury is still out.

I have been looking into places where we might be able to live together with MC available but no luck so far. That would be the best of both worlds.

Thanks for letting me ramble.

W.L.

M1

W.L., I am so sorry, I can only imagine how painful this is for you.  I'm glad you've found this forum and hope it will be of some help and support.  Take your time to think through all the options carefully--it sounds like you are doing just that.  I've said this before in other contexts:  the hardest thing we are asked to do in life is provide safe passage to those we love--and you're doing that for a second spouse now.  What a kind man you must be, and courageous to play the hand you're dealt.

Kaustin1741

I'm sorry you are in a tough situation. Also keep in mind as she progresses, regardless of where she is , she may not think she is at home. We struggled with keeping mom in her own house with caregivers or moving her in with us. The cost of 24 hour care became too much and when she started asking to go home even when she was sitting in her own house she had lived in for 30 years, we realized it didn't matter where home was. She still asks to go home sometimes, which to us makes sense because she is in a different home than she was before. Recently I watched a video of a doctor talking about the issue of home. They said asking to go home can relate more to any feelings of sadness or being uncomfortable in that moment, but doesn't necessarily mean they don't like their current living situation. They feel uncomfortable and the "idea" of home means safety. Doesn't mean once they get there it will make everything better. 

This is the video I watched and she has a lot of helpful videos to watch

https://youtu.be/nTCbRUurY1g

King Boo

Dear W.L.,

My heart goes out to you.  You, who have been so brave, and made some very difficult decisions - and they were VERY VERY GOOD ones.

Virtually every caregiver suffers from the 'what ifs' after a placement, and we all have significant amounts of grief to work through.

If we don't work through it, and make solely emotionally driven decisions (like deciding to bring a LO home who is adjusting well to MC because we are upset and miss them) - we find ourselves in trouble.

There was nothing foolish about wanting to move near your kids - the fact that she obsessed over it is just a hallmark of the disease.  It would have been something else if she didn't have that topic.

Moving her near her son was a very smart, smart decision.  I know you miss her but if you need to, you can make plans to move near them at a future date.   Leaving her in a facility without an energetic healthy younger person to advocate for her should something happen to you would not be a good thing.

This is a disease of decline.  You placed for a reason, the memory of the difficulties may have lessened somewhat now that you have a few good weeks of sleep and caregiver free days.  If you pull her home, you are likely to again face the deficit of no 24/7 facility care, caregivers who do not show, and you are surrounded by 24/7 dementia land again, which can be grueling enough to take an elephant himself down.

We had a very wise member name Zolly, who is gone now, but he realized late in the journey that more than one person could be sacrificed 'at the altar of dementia' - it can take an entire family out.

Move near your children, or near her.  I don't think you should bring her home.

Much sympathy.

SonShine Lady

Hi W.L.,

My heart goes out to you.  My now 87 year old mother and 89 year old step-father have been married 46 years - a second marriage for them both.  I live three miles from them and was able to be there to help when my mother began having obvious dementia symptoms that began in the Fall of 2018 but my step-father was the one with her 24/7.  My mother refused to see a Dr. for months, then refused to take her medication and declined mentally and physically very quickly.  My step-father did everything he could to keep her at home but when she left the home for the first time while he was taking a nap and found sitting in the middle of the road by a police officer, that put the wheels in motion resulting in her being placed in memory care in late August 2020.

My step-father was devastated but knew this was for her safety and, after over two years of caring for a sometimes very aggressive, argumentative person (nothing at all like her true personality) plus now doing all the housework, grocery shopping, etc. he was getting worn out and has health issues of his own.  My mother had taken care of everything in the home, including all their finances and my step-father had not lived alone since marrying Mother and was really struggling.  He was very pro-active and went on the Council for Aging website, called their office, and was referred to a company that has various types of medical personnel who come to the home.  Through them he had regular sessions with a counselor.  He also called an Alzheimers association help number and spoke to one of their counselors at least once.  He read the book "The 36 Hour Day."  These resources really helped him.  Once my mother was stabilized on medication at the memory care facility, she was back to "normal" with just short term memory loss and sometime during the first two months he considered bringing her home and met with the memory care facility's director.  She said Mother would likely go back to refusing medication again at home and they'd be in the same situation that necessitated her having to go to memory care and placing her a second time would be torture.

It is now just a little over five months and my step-father has made peace with the situation.  We do live in a state that has opened care facilities, using PPE and safe practices, so we can visit but sometimes that is hard because she looks and acts so well but we're only seeing her for a small slice of the week and we've been told Mother has "good and bad days."  Step-father says he cries sometimes after visiting her (and he's not one who cries) and it takes a lot out of me when I visit so even that can be hard.  Recently my mother is becoming incontinent. When my step-father and I have talked, we both agreed if she had gotten to that stage at home that would have been embarrassing/awkward/etc. for them.

A response that my step-father received on a forum was a beautiful message: "Now you can stop being her caregiver and be her husband again."  God grant you peace in this situation.

W.L.

Well, thank you all again.

I guess I have committed the cardinal sin and against all advice, I brought her home yesterday.

Yes there were lots of questions that were answered over and over for a while about where she had been, pretty soon she couldn't remember being gone but had some memory of the facility.

I have read so much on here about how so many have suffered so much with moving a loved one into MC and how it's handled. My son, my sister and now I realize I too am suffering from some sort of mental issue. It has to be due to my compulsive and then indecisive behavior. I make decisions and then begin to question them with often unwanted results. I am seeking some help with that.

Meanwhile she is home and happy. I know I have my work cut out for me and hope for the time being I'm up to the task. I also know that somewhere in the future she will need to go back but for the time being I cherish her being home. She whispered to herself last night in bed, "I'm home." As I picked her up, she cried and touched and touched me saying "I didn't think I would ever see you again." Did I react to emotions? Yes, yes I did and they have ran rampant for over a month. I did nothing but cry and wail. The fear in the family was they were losing me too, to either a breakdown or heart attack.

Where do I go from here? Well, we will live day to day and take it as it comes, I hope I don't sound cavalier or brave about this, I'm not, far from it. I suppose more cowardly about facing life without her than with her. Either way I have made the decision and will keep her here with me as long as God allows and while continuing on here seeking information, advice and sharing my/our experience as it unfolds.

W.L.

LaurenB

W.L. I don't think that you've committed a sin at all.  You are doing what you think is best in your situation.  That's all that you can do.  Enjoy the time with your wife and make sure that you have plenty of in house care to be able to allow you to continue being her husband.  You've got this!

Lauren

easy23

I brought my husband home from MC after a 5 week stay - against advice from friends and family. That was 3 months ago and I don't regret my decision at all. I am happy to have the time with him!

Quilting brings calm

It’s not a sin.  It just may not be a possibility for the long term.  Look, you and her son are  there and you see what is happening.  The rest of us are operating off your posts and our personal experiences.  We aren’t you.  

My suggestion is still to get to get your home ready for a move.   Get rid of unwanted items, get repairs done.  That way you can move quicker when the time for a change arrives. Especially since you sense that you yourself may need some support.   Get paperwork in order so that your son and hers can make decisions on behalf of both of you if necessary.   Decide which one of them might be best  able to care  for both of you in one city since you couldn’t deal with her being apart from you.  

jfkoc

Good...you made a decision. I would  have made the same decision. Now you go forward.

W.L.

Wow, not the responses I expected,  thank you all again. I was beating myself up again for going against conventional wisdom and now see I am not the only one. Every bit of this is good advice, especially coming from those who have been there and I get to see both sides of the coin.

What a great forum with caring people this is. When no one is at your elbow it's nice to come here for advice and encouragement.

God bless you all.

W.L.

W.L.

T
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easy23 wrote:

I brought my husband home from MC after a 5 week stay - against advice from friends and family. That was 3 months ago and I don't regret my decision at all. I am happy to have the time with him!

Thank you easy23 for posting that, it's encouraging. My bride was in MC for 37 miserable days and I'm only two days into bringing her home but am already glad I did.

easy23

You're welcome W.L. It's always nice to hear from someone who is going through the same thing. I hope all continues to go well for you! The MC where my husband stayed told me they're always there if things change. It's good to know.

KathyOnOBX

Hi W.L.

Enjoy having your wife back at home.  I trust you are getting in-home help to care for her around the clock? Please don't try to take care of her by yourself with no help. It's usually too much for one young, healthy person to do.

I encourage you to look now for Assisted Living housing for you both.  If you look now, you can choose a place of your liking where you both can go and stay together, yet still get the medical care help she needs and you may eventually need. Perhaps you can ask her son to help you look for a place.

We brought my mother-in-law home again after she was in a memory care home for a short time because she begged and pleaded for us to. I sure do know how heartbreaking it is! You are more lucky that we were because you can possibly have the best of both worlds if you find an assisted living facility!

Sadly, my mother-in-law fell at home in another part of the house while we were all at home! She hurt herself pretty badly in the fall and had to spend time in the hospital.

 We had a very difficult time taking care of her at home even before she fell.  We couldn't afford in-home help more than 6 hours per day and even that help was unsatisfactory. Medicaid paid for that, but the people who came in just didn't do a good job, sadly. We also had Meals on Wheels for mom, for which we were very grateful. You might want to look into that.

When mom's hospital stay was over we had to make the even more difficult decision to take mom back to the memory care home from the hospital. The one she'd been in told the hospital they didn't have room for her to come back. I called the Director there who had not been consulted and she said to bring mom straight there right that minute. The ambulance had to take her there. There were a great many tears all around.

A year or so later our house burned down. We decided after months of discussion to move to another state and sell our rebuilt house as soon as it was finished. We paid $5,000 to a specialty company to transport mom to a care home in the new state in an ambulance, 8 hours' drive from the former care home. Two paramedics traded off the driving while a R.N. sat in the back with mom the whole ride, administered her meds, read to her, gave her snacks, etc. That part was great! Mom even enjoyed the ride.

I moved to the new state ahead of time to arrange the new place for mom, and my husband stayed behind for the month it took until mom could be moved to the new state. It was very complicated making all of the arrangements.

Mom liked the new care home much better. Sadly, mom was sick by that time (medically),  and unexpectedly went downhill fast. She was 93. She did not survive for long. We still miss her terribly every day.

JudyMorrowMaloney

I did bring my husband home from Memory Care because the place

Was horrible. I didn't like the care she was getting. It's been tough and I know he will probably have to go into MC again but

It won't be there. If she is getting good care where she is then leave her there because I'm trying to get home care for my husband

And I can't find anybody because of the shortage of home

Health aides.

W.L.

Again, thank you to each who have replied with your own personal experience. Obviously there is no cookie cutter answer to how our loved ones are cared for. It's also obvious that each of our loved ones are at different stages of this horrible disease so each experience and need are going to be different.

The MC home she was in couldn't have been better and they also said they would take her back if I needed to. She has been home with me for a week now and is happy and content. I firmly believe I placed her in MC too soon and I was doing it for my own selfish reasons. That's a long story in itself.

So far, again only 6 days home, I have not sought in home care altho it is available if and when needed. I keep her involved in all aspects of our home life and other activities.  I do have a support group from our church that are willing to come in to give me a short respite when needed.

Again, life is now lived a day at a time and I am grateful for each day. Treasure what you have for as long as you can. We don't often get a second chance. I trust God will bless each of you on this difficult journey.

W.L.