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My husband has been in memory care for about a year, during the Covid shutdown. Since I have been visiting him on a regular basis now, he seems really stable. Today the doctor wants to take him off 2 of his medicines that may have been making him drowsy. He is incontinent however and a little unstable on his feet but I’m thinking with help from a caregiver I could bring him home. My hesitation is that this stability may not last and then I would have to go through the whole process of getting him in a decent place again (since there’s no guarantee he could go back to same place). He seems happy and content there. Am I just being selfish because I miss him so much? My family is telling me he is doing well because he is getting good care and they remember what I went through before. He had started wandering and was not always sleeping when he was home but he seems to have passed through that stage. Thoughts on this?

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I think you are feeling some 'guilt' at the fact that DH is doing well and 'maybe' you were too hasty in placing him and now you are rested and calmer (a guess on my part) you are re-thinking a decision---

My advice? Leave well enough alone. IF he is happy and thriving, then isn't that what you want? Do you really want an incontinent, memory impaired husband living at home again and all the stuff that ineviatbly goes along with that.

He won't get better. You know that. Think back to how it was before you moved him to MC. Was it wonderful and easy on you?

What you are 'missing' is the Dh you married and the youth and vitality that come with being young and leave us waaaay too soon.

For me, just the incontinence would be a deal breaker.

Don't make any hasty decisions. Think back how it was to have him at home and what toll that took on you. If he qualifies for MC, then he must be fairly high need.

Good Luck--this would be a difficult decision for anyone.
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JColl7 Sep 2021
Yes you are right. I am thinking that I could have kept him home longer. Deep down inside I know he won’t get better. He has just been so stable lately. My visits with him are enjoyable. But when I think back to how it was when he was home, I realize he is in the best place. Thank you for your response.
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I, personally, would give it some time before you bring him home.

My dad did really well in a supervised situation with others to socialize with, proper meds, timely, nutritional meals and snacks, then he moved and the slow, steady decline started.

You know change can cause a downward spiral for alz/dementia patients, it is a crap shoot to make this kind of change. Dementia never improves, it is degenerative. Good days can fool us all and make us question the diagnosis.

What about doing day outings to see how he is able to deal and most importantly to give you some one on one time with him?

Please listen to your family, they saw the trees you couldn't see when you were in the midst of the forest. Your well being is important for you and him, he needs you to advocate for his and becoming a burned out, exhausted caregiver is not an ideal situation for ensuring this well being for both of you.

Hugs, it is so challenging to know what to do with this rotten disease.
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JColl7 Sep 2021
Day outings sound like a good idea.
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Well, my mom moved in just prior to all the shut downs last year. And then they had a positive case and extra isolation, and I could video chat and see her hallucinating and just the guilt overwhelmed me. How could I leave her there? And I brought her home. And soon realized that was a mistake. All the reasons that she went were there, and I soon began to feel the strain... constantly being alert even at rest, the delusions ( where are my children, and going out the door) urine in the waste baskets in her room ....And about 7 weeks later pleaded with them to let her come back. After the first positive case (staff, not residents) they did great. And I was able to see her outside on the patio, and now finally back in her room. She's always glad to see me, even if she doesn't remember later I was there, and other people are getting pinched and yelled at when she needs to change clothes or shower, or take meds.

Regular schedules are important with dementia, and changes like moving can really cause a step down in functioning, so be aware of that.

I needed to be daughter, not caregiver. It affected me, my husband, my ability to go anywhere, or help with my grandkids.

My advice is to visit often as you can, maybe even get a video chat device so you can chat even on days you can't make it(we use a Facebook portal)

I love my mom, but she is in the best situation for her. In her right mind, she wouldn't have wanted me to go through what I did. Everything thing about this disease is hard. If his needs are being met, keep him where he is. Nothing is perfect, but I'm sure he would not want you to risk your physical or mental health.
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JColl7 Sep 2021
Oh I had forgotten about the sleeping (or not) with one eye open.
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I would leave him in MC where he is getting good care.
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No. He will not remain stable forever and you’ll have to place him again eventually. That will be much harder on you (and likely him) the second time around.
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It's normal to miss the person they were. But he's not that person now.
Why not run this question by the spouse forum at the Alzheimer's website to see what they say? I only say this because it's a spouse specific forum and someone over there may have tried this.
https://www.alzconnected.org/discussion.aspx?g=topics&f=2147485438
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JColl7 Sep 2021
Thank you. I will check it out.
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No.
No.
No.
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If you miss him, go visit him every day where he lives, is stable, and functioning well.

If you bring him home, what will you do when the wandering starts in again? He may have 'passed through one stage' of behavior right now, but what happens when he enters ANOTHER phase of behavior you're unable to handle alone at home??

Let common sense prevail. There is NO common sense surrounding the dementias, and the behaviors that change dramatically from day to day. The reason there are Memory Care ALs popping up everywhere is precisely b/c the vast majority of us are unable to handle our loved ones at home without a team of people and a facility specifically designed for their care.

Best of luck
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You need to do what is best for him, not you.
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Listen to your family.

He has 24/7 card and supervision at the moment. Additionally he has a routine that is working for him.

Still visit, but also explore hobbies and interests of your own to enjoy in your free time.

My former bil has Paranoid Schizophrenia, when he was in an institution he did well. He did not have to worry about anything, but when he was moved into 1/2 way houses in the community, things went downhill fast.
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It is unlikely he'll remain stable if you bring him home. If he's content and well where he is, leave him there and be thankful. And visit often.
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Absolutely not. Leave him there. You can not do it home anymore. Hugs 🤗
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I would think you will not have the same enjoyment if he is home with you that you have now in MC. You can visit him, enjoy him, take care of him there and let them do the hard stuff. In my opinion I think you would end up regretting bringing him home. Then you would have to start all over with placement and his adjustment. It would be hard on him to move home and then have to move back into possibly a different room, maybe even a different facility. The staff would not be familiar to him either. The time the two you have together at this point in his life should be doing good things together and making good memories. I don't think you would have that opportunity if you are always stressed and busy taking care of him. I know your love for him confuses the situation so it is good you asked everyone. Hugs to you.
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The reason he is seeming to do better is because he is were he is and on a schedule with trained caregivers. This means you have picked a good place for him to be. It is very very usual for some one to get "better" after moving in to a facility for these reasons. If he goes home he will go back to where he was, or lower. You can love him, but still home can not be the best for him to get the care needed. If he is doing better where he is, feel blessed.
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Selfish….maybe unrealistic is a better term. Of course you miss him. But he has finally adjusted and he is not going to improve and will continue to get worse. Moving him would likely cause a downward trend and moving anyone with dementia is always hard on them. A caregiver may not be reliable, or a good fit. Please reconsider. I think you are thinking with your heart and not your head.
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I struggle with guilt daily, missing my mother and wondering if she would be better off living with me. She has quit eating since she’s been in the memory unit and is declining. I’ve thought about what it would be like to bring her to my house and take care of her. Then I had the thought that if I got sick or something happened to me, what would happen to my mother? I’m no spring chicken and nothing is guaranteed. At least I know she’s safe and we’ll cared for. It’s just not easy, I know. It’s best to leave him there, as long as he’s getting good care. You’re a better companion because you’re able to care for yourself and spend quality time with him. ❤️
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We needed to take my Mom out of Assisted Living because she needed a higher level of care. We have her at home and she is incontinent and confused at times and unsteady on her feet. I have been reading and I know it's only going to progress downhill. This is a tough thing to do, I am up most of the night and she needs to be watched all day. I do not know if you are working but I am retired and I find it difficult. As far as hiring a caregiver I guess you need to ask yourself if you would be comfortable with someone in your home, I would not unless I knew the person really well. As time progresses we may need to put my Mom into memory care and there is only one place I would feel comfortable with. If you are comfortable with the place your husband is in and you know he is cared for, personally, I would have him remain there for his sake and yours. We have needed to move my Mom several times and it's unsettling. Perhaps if you miss him you could visit more, have dinner with him every evening? Best of luck with your decision, it's not an easy one.
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He is in a structured environment which probably explains why he is doing do well there. There are people who dont do well in unstructured enviroments. Prisoners in prisons area good examples. Some of them, if not most, do far better in prisons than outside.

To answer your question whether you are being selfish, yes, I am sorry to say so. This is selfishness in that it benefits you more than it wd benefit him. You are thinking wirh your heart while positive and benevolent thinking is realizing he is happier where he is.
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I moved my 90 year father out of MC 6 weeks after the covid lockdown when no in person visits were allowed. Everyone told us not to but I did b/c he was so lonely and was giving up- not eating & sleeping all day. Dad could afford 24/7 help so we set up an ADA apt. for him and he flourished for 10 months until he passed. It was the right choice for us. I will tell you that not everyone they send from an agency is suitable to deal with AZ and the complications of helping a person in a wheelchair. I was around a ton & kept a watchful eye. My dad enjoyed MC before the lockdown & I wouldn’t have moved him. His needs were met, I got good sleep & could just be supportive. When I took him out I was always thinking ahead & having to check to see people were handling his meds, hygiene, dietary needs, etc. I’d do it again. As long as family members were allowed into MC I felt like Dad got A+ care. After lockdown things got sketchy b/c no one was watching. Good luck and God bless. You’re Dad is lucky to have you!! I miss my dad dearly, but know we did it right!
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Both spouse & I are in 80s. He promised he would work with therapists and seemed able to bathe & dress himself. Brought him home seven months ago, with help three times a week. It's been a nightmare. No, it's been hell! He has been bladder incontinent for a dozen years; now he is bowel incontinent too. After two months home he refused to get out of the bed, and he has not set foot on the floor for five months. He will not even raise the bed to sitting position for meals. He shouts; he curses (everyone, especially me); he wants to get out of here; he wants to die (sometimes I pray he will get his wish). I am trying to figure how I can send him back to nursing home, any nursing home. I don't care if Medicaid takes my condo - I will have my life back and peace and quiet. Caring for your LO is a thankless labor-intensive job.
So my advice: Don't do it unless you have 24/7 help.
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JColl7 Sep 2021
Wow. That is a lot. My husband stayed in bed too prior to going into facility. He would probably return to that! I couldn’t have that. Not good for him or me.
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First of all, you are clearly an awesome person that cares very much for your husband and willing to do whatever is best for him. If you can work out having a caregiver, I would learn towards having him home especially since doctor seems to think so as well. Probably at some point he may need memory care again. Maybe not, maybe home will be the answer if you can do it. Please do not take on too much yourself, that will not do anyone any good 🙂 My concern is that there may be future lockdowns and that is extremely difficult and confusing to the elderly when they are not with family. Do what you feel is right, God can provide incredible strength, be cautious in taking too much yourself, find good in home health. Just do your best each day and you will have no regrets.
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lealonnie1 Sep 2021
Where does the OP say that the 'doctor seems to think so as well' in terms of taking this man back home???????????????
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I take my husband out at least once a week. We sit in the car and have lunch. Sometimes we go to the park but still have to stay in the car. My situation is different in that he wants to come home but he’s incontinent and has delusions at night. Usually directed at me. He’s in the best place. I can’t take care of him anymore. It’s good that your husband is happy there.
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When your husband is taken off two medications, things may change for the worst. All medications have side effects and drowsiness is a main one. The withdrawal of the medications may not be a good idea so wait and see what the effect is. My mother’s NP at her facility reduced and eliminated Depacote which has resulted in major personality changes…for the worse. The facility did not inform me of this, and I couldn’t understand what was happening. I demanded that she reinstate the Depacote and things are very slowly improving. Either way I wouldn’t bring him home. He seems to be comfortable and content where he is. Providing care 24/7 even with help is an overwhelming job.
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My loved one is better in AL and is more compliant than with me. I now get to be the fun person, the advocate and I utilize Alexa Show 8 to drop in and visit every day. I also put reminders on it so activities come up. Now, the times that are more lucid and stable I have come to realize are because of the stable environment and the many people involved that didn’t get burned out as I was getting. Meds, meals planned and prepared, cleaning, trash removal, doctor’s visits, PT when it was needed. The only thing I have to schedule out is dental and eyes. The quality of life has been better and more social than at home. It was harder on me because of the hard choices but I am so happy I am rested and able to be fully there. My mom took care of my dad for close to 15 years and it took her health and peace. She did have help and it was exhausting even with help because she still had to do all of the thinking and planning and scheduling.
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I think of doing it all the time, even have dreamt that my spouse has hugged me and said 'I love you.' But it is totally unrealistic. We forget just how all-time-consuming care is, and for what purpose? It is a downhill ride.
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I'm probably not the best person to answer this question, because my husband has only been in MC for 10 days. But even after only 10 days, I'm starting to forget all the sleep deprivation and the constant vigilance to keep him safe. At least once a day I ask myself if I was too hasty. Then I go spend an hour with him and realize that he requires a team now, not just one personal caretaker. Be kind to your yourself and when you miss him, just go sit with him at the MC facility. Our facility lets me bring in some wine each day, so we have our cocktail hour at 4:00!
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First, Be careful taking her off meds. My mom had seizures and permanent brain damage after not being properly weaned off at a nursing home. Now she cannot walk, talk, or move.
Second, I brought my mom home. I have round the clock care through Medicaid. I pay them extra out of my own pocket because you have to pay more than $12.50 for good help. I’m glad she’s here. I love seeing her every day. But it’s very challenging to find good, honest, reliable caregivers and we have no privacy. Sometimes drama too. It is doable but tough.
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I wonder if you could bring him home for a few hours several times a week, and see how he does at home. When my mom got Alzheimer's, we tried Assisted Living, but it just didn't work, so she lived with Hubby and me for 5 years until she passed away, (at 94). I even wrote a book about our experiences called, "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." (I thought of the title when I was driving home from work one day, and I realized that this "broad's" once broad life was reduced to the pressing health concerns of my mom and dog.) Each situation is different, of course. Best of luck.
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He is doing better, that’s a good thing and I see that as confirmation that placing him there was the right decision. Moves anywhere are hard on patients with any cognitive decline and the kind of needs that forced you to move him there in the first place. So please make sure you consider the drawbacks for his mental and physical health as well as yours 2 or more possible moves might have along with the pluses of having him home again. Sometimes these sacrifices are the hardest as well as most loving we can make during these journeys with our loved ones. Selfish? I guess you could say moving him there was selfish just as much as saying moving him home now is but that’s not the way I would describe your actions either way, you are acting out of love and considering all of the best ways to do that. Asking this question indicates to me that you aren’t being selfish, you are trying to check yourself and gather all the considerations. These are not the questions of a selfish spouse, just one of a very loving one, he is a lucky man.
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I think you should leave him in memory care. He is happy and stable. He is probably getting the care he needs. Patients with dementia, Alzheimer’s, do not do well with change. I cannot recall your age, but caring for someone who needs 24/7 (even with outside help) is incredibly difficult and may negatively affect your own health. Memory care also have professionals who are experts in caring for dementia patients, offer many activities, manage their diets and medications. What if you ill and cannot care for him? I do not recommend repeated transfers, This will cause great stress, resulting in a decline in his health
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