After 44 and 1/2 yrs of being together, he has had a difficult time adjusting to being apart from me. I'm not able to take care of him at home any longer, even with caregiving help, going to a dementia day care program and hospice services. 24 hr. home care wouldn't work because he would be looking for me and wanting me to help him. Our children and his close family supported his placement. Our 3 children still say, "Mom, we know that you'll make good decisions." He was better for a few weeks about me leaving the facility, but last night he begged me again, "Please don't do this to me. I just want to be with you." That used to happen a lot for the first 5 weeks. I've been back and forth with hospice saying we (sister, her hub and me) should refrain from visiting for a few weeks (which wasn't a good decision), and now, visit often, but don't take him out too much. His sister, who is beside herself over his decline, is having a lot of trouble, as am I.

Hospice and the facility feel that he shouldn't leave the facility grounds too often so he is able to see the facility as his home. We should try to only take him out to lunch or off the premises once or twice a month. His sister and hub would like to do that more often, and take him to their home, where we spent many fun times. As far as the facility, the grounds are beautiful, as is the facility, and there are ample sitting areas inside and outside where we can relax and enjoy the weather or take a walk. Over the holidays I took a week away to visit family, and they took my hub to their home. On Christmas Day, they took them to a family gathering. It was probably too much, because he didn't eat much and kept his eyes closed on Christmas Day. Today I called hospice and asked for a family meeting with his team so that everyone is on board. I agree that taking him off the premises too much isn't good. He doesn't always recognize the people whom he used to know, including our children and grands. The world is confusing and there is much that he can no longer do, like using eating utensils, seeing and identifying nearby objects, using the bathroom alone (he wears pull-ups), etc.. His hospice RN said that he will feel safer in an environment that he knows and I get that. She told me that family tends to want to do things that make us happy, but aren't necessarily good for our Loved One. We project our wishes on them. I think that's true. We dearly want to give them good experiences and return to our former days of joy, but their world is no longer the one that they knew. It's very hard. I love my s-i-law and her husband. But I feel like I'm between a rock and a hard place, and frankly, they're upset and I am, too. I don't want to destroy our relationship, and I'm lonely and need their support. Any suggestions, dear ones? It's a horrible, horrible disease!

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It astounds me the loved ones who are either in total denial about the dementia that's happening, or unwilling to learn all they can about the disease! They expect life to go on as take your hubby out to their home and visit with friends and family, as if he does not have a debilitating disease that's robbed him of his memory and mostly everything else that's been 'him' for decades. Yet, if he had a physical disease or issue like crippling rheumatoid arthritis, they'd NEVER consider taking him to a function and forcing him to feel pain in the process. But a mental disease, oh, that's different! He'll be FINE and there will be no problems at all.

Mind blowing.

I work in a Memory Care community & see this all the time. We had a woman living here who's son refused to accept the degree of dementia his mother was suffering. Nope, wouldn't hear of it. She was non-communicative; didn't speak at all. So his brain child was to have her learn SIGN LANGUAGE as a way of communication! Sign language; a complicated thing for a person in GREAT health to learn, never mind someone with dementia who is incapable of learning ANYTHING new!!

Denial; it's not just a river in Egypt.

I like BarbBrooklyn's advice about what to tell your family members. Also, the MC can only allow him to go out with people the POA AUTHORIZES him to out (off the premises) with. If you don't want anyone taking him out of the MC, don't give them that authorization. Period.

And tell your family members to read up on Alzheimers at .....doing so will benefit everyone who loves this man.

Good luck!
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jacobsonbob Jan 2020
"Denial; it's not just a river in Egypt."--LOL, I LOVE this and I'll have to remember it. Thanks!
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You are the one driving the bus, dear.

"His doctor says that wouldn't be a good idea" should suffice.

If it doesn't, you say "well, I guess if you sign off on being fully responsible financially for the fallout, including the need for 24/7 aides"...
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cherokeegrrl54 Jan 2020
I agree, it is a terrible disease. So sorry that you are having to deal with all of this.

Somewhat I feel that your SIL is afraid for herself, that she will also get this disease and thus wants to pretend that it really is not happening at all or that it is not as bad as everyone else thinks. She is trying to make herself feel better.

Yes, I so agree with the hospice, he needs to stay put, this is his new home and he needs to acclimate himself to it.

It may take some time for your SIL to accept what is actually going on, in the meantime you will have to support Hospice, this is in his best interest. What I would say is "For now, I have to go along with what the trained professionals recommend, I am sure that they will notify me if something improves",
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As others have said, do what's best for your husband and yourself. In situations like this, it's rare that everyone will be happy. In my experience, the people farthest from having to deal with the situation will generally be the least happy since they have no idea what is really going on.
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At the point your husband is he should not be taken off of facility grounds. It confuses them. Taking them to the old places does no good. His short term is gone and longterm following. You are really not allowing him to adjust.

As said, ur in the driver's seat. As his wife, and maybe POA, you make the decisions. When Mom went to an AL, I was asked to list those people who could take Mom out of the facility. Maybe your going to have to tell facility no one can take DH out without running it by u. As said, tell SIL ur between a rock and hard place but after speaking with Hospice visits need to be cut back and no taking DH out of the facility. Its for DHs good.

Closing the eyes is what Mom used to do. Weird thing was, she spoke more coherently. Maybe is a protection thing. ALZ/Dementia people overwhelm easily.
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Franklin2011 Jan 2020
I believe closing the eyes is a protection - there’s too much stimuli for them to process. Probably being in a “strange” place with the hubbub of a holiday was too much.
Let me ask you this: Did close family ever question you during your 43 years of marriage prior to Memory Care? You do not need to explain yourself, not even to your SIL.

In order to maintain a good relationship with your SIL and other close family members, you must establish healthy boundaries for yourself. Repeating yourself over and over is only hurting you.

The doctor has made it clear that taking your husband off the premises is bad for him. At the family conference, let it be known that no one can take him off premises anymore. That is not up for debate, your decision is final and you will not change your mind because family gatherings can just as easily be held at the MC and you all need to adjust to the new normal.

In the future, a firm "Please respect this gut wrenching decision that I have had to make" may signal to others when they are crossing the line. You have every right to end a conversation that is becoming unpleasant and intrusive.
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Step-sister wanted to take mom out of MC for outings. My response, mom must walk back into MC on her own without a fight. If she won’t walk back in, don’t call me. Mom will be your responsibility from now on. Have never had the question asked again.
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You sound like a very kind and gentle person and there is so much strength to that character quality! :-) But, under these circumstances, you cannot worry about what your sister-in-law thinks about the doctor's orders, which may look like your choices to her. Now, I'm more concerned about your fear of losing that close relationship with your sister-in-law if she grows bitter with you for not allowing your husband to continue to being removed from the facility where he is best cared for. You are lonely and need friends. I don't care how old anyone is, it is never too late to make new friends. It may take some work and effort on your part, but please find a community group, church family or some other social functions so that you can be surrounded by others who will support you. This forum is a good place to start. :-) But, it would be more enjoyable to make new contacts in person in your home town or neighboring town if possible. You need to be cared for too as you are going through enough grief and suffering seeing your husband's world change so rapidly. Remember, you need friends too. Perhaps, reaching out will help get your mind off the fear of losing relationship with your sister-in-law?
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geddyupgo Jan 2020
Such a good answer and suggestion. Too often we feel as we get older is can be too hard to make new friends but the effort is often worth it. The Alzhemier's Association can probably suggest support groups that might be supportive. Great suggestion.
The Doctor and staff have advised what should be done for what is best for your husband in his condition and you are following their advice. At my mother's memory care home, it was not only a secured facility, but residents had to have someone with approval, sign them out if taking them off premises. I would have the home limit that to only you.

I would also think about having those family members sit in on a meeting that has a speaker that discribes what this disease is, what changes, what the patient goes through, what is best for them, what spouses go through, etc.

It is not easy for anyone to see this happening to someone they love or know. Especially if it is the first time for them. They have to understand it is not easy for the person to be comfortable or understand the things they use to. Their world needs to be smaller, less confusing, less stimulating, but NOT less loving.
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His sister is trying to salve her guilty conscience but she is not aware she is doing that. She feels badly that she is unable to take him in.

As the wife, your decision out-weighs hers. And the Memory Care Facility is thinking of your DH first and foremost, which is as it should be.

Your SIL is not deliberately trying to hurt you and doesn't realize that she is affecting you.

You ARE doing what is needed and that is rarely if ever easy. You are doing what is best for your DH. You are listening to the advice of Hospice and the Memory Care Facility and that is paramount.

Tell your SIL that as much as you value her input, you feel it is best to listen to skilled nurses and are following their advice.
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