Husband with Alzheimer's placed in nearby Memory Care facility 2+ months ago. How do I deal with his close family questioning my decisions?

Last July I moved my mother to a memory care facility 15 minutes away from me so I could see her more frequently and bring her to my house for the day while I did my housework and so forth.

I haven't had her here once.

I want her to come here, but I quickly realized that change is so very hard for someone with memory issues and it isn't fair to take them away from what's familiar. What's familiar fades very quickly, so your SIL and her husband probably don't realize that even their house is no longer familiar enough for your husband to be comfortable there

I now bring my mother Mexican food for lunch once a week, and we "eat out" at her place. I wanted to take her down the street to the place where I get the food, and the staff at her place (whom I trust) said not to do it. They're correct, of course, and she's much more stable when things don't change much from day to day. Even the Christmas decorations at her place stressed her out, but now that they're gone, she feels much better.

Here's how I look at it -- Remember when your children were very small? If you were out and about and walked more than a few paces ahead of them? They'd freak out even if they could see you, and somehow they couldn't bridge that gap and catch up to you. They'd plant their feet and cry, no matter how much you'd tell them to catch up. You'd have to take a few steps back toward them in order for them to be able to catch up.

That's what happens with dementia patients. They can't bridge the gap between what feels safe to them and what is still safe in spite of being a bit different than what they're used to. You just have to stay within their boundaries of what's comfortable, not yours.

Tell your extended family that it isn't kind to your husband to apply their standards to him. He's not the person he once was, and the most loving thing to do is to work within his parameters, not theirs.

Very respectfully, speak with them as if your best friend was just making sure you were ok with your decision. Then let them know your decisions were well thought out andwith a heavy heart, but perhaps they would like to speak with the social worker up there to get the staff's input on whether another family member should give it a go. (I bet none will step up.) I'm sure the social worker will be a great advocate in explaining things to them.

Further respinse to katiekat 2009
Hit the wrong button before editing previous comment, sorry. Got rather carried away with describing these flash new facilities in Australia.
Must acknowledgec original poster VeggieGs husband may well not live in such an exceptional place, but there may be some way the staff could facilitate a dining experience, even if it were just in a cordoned part of the communal dining room.
Cheers

Responding to Katiekat2009
I live in New South Wales, a state in Australia. There are a lot of these fantastic privately funded aged care facilities being built to meet the burgeoning ageing cohort here. Some are single floor, some 2 or 3 storeys. They almost always have the same type of amenities. But not all have memory care units, which made it difficult trying to find a suitable place for my mother. Although they are not officially nursing homes they still cater to residents requiring those services.
In this instance it really is somewhat of a compound, for want of a better word, for the elderly.
Had my mother been sensible, when she sold her property she could have bought a little cottage in the gated compound section. It would be 2 or 3 bedroom, 2 bathrooms, car garage, small yardvand court yard which is maintained by the facility. She could have had her own furniture, pictures, personal belongings, housework done for her. If she did not feel like cooking there is a communal dining room, recreation room etc. Call buttons for emergencies, nursing staff available and so forth.
When residents are too frail to care for themselves they move into more of a suite, own bedroom , dining lounge combined. Tea and coffee making nook, tv, wi fi, telephone. Even if they are bed ridden they remain in that section where an RN is available around the clock. Supported by ENs and 1 carer to 4 residents. Palliative care (that seems to be hospice in US) is also available.
Of couse by the time we got our mother into a 2 week Respite she had well and truly tipped into dementia which was recognised the same night she arrived in the open section. We were lucky that the memory care unit had one space available, my sister had enduring guardianship, my mother had funds available so we arranged for her to remain permanently. Because she has security of tenure, having paid a huge bond, she cannot be forced out except in very, very exceptional circumstances. During psychotic episodes she has been destructive, she has been aggressive, even violent towards staff, non compliant in so many ways yet she remains. She is really very nice and obliging and happy in her decreasingly lucid moments, so they know it is not her nature to be difficult. She will be there until she passes away, unless she chucks azmental and insists on being hospitalised. Where, ironically, she would not receive such attentive care.
This particular place has hairdressing salon, special room for massages, games rooms, craft rooms, exercise rooms. Some even have a swimming pool for aqua therapy, but not this one. They have their own bus for outings, conduct high teas, provide interesting talks, have a baby grand piano for singalongs, a laundry, conference room, occasional cocktail parties. Had Christmas functions, have fun fays for Halloween, Melbourne Cup, Bastille Day, and some days even as much takeaway pizza that residents can eat. They have also introduced some sort if bistro where residents can get meals out of normal dining times ... not oir memory care like my motbercof course.
When my mother initially checked the t hec place out, she said it was too posh for her and yes, it does look like the inside of a resort. But there are people there from all walks of life, state of health and wealth. They are required to keep a certain % of rooms for governmentvplacements.
Traditional nursing homes that do notcgain or keep accreditation are gradually being phased out, the rest seem to slowly being modernised, althoughthey still retain thecpoor nursing home reputation they frequentl earned and deserved.

I am so sorry for what you're going through. A family member is 3 years into this horrible disease.
Of course you need a support system, but you're the one who makes the decisions along with the family's input.

I'm so sorry for what your family is going through. When my mom was in Assisted Living, we mostly visited her there. I would join in whatever routine was going on at the time - meal time, bingo, church service, etc. I would bring her to my home for the day on holidays. I have six brothers and sisters so this allowed her to be where they could visit her also. She liked her routine there.

Great comments and suggestions here. Have that meeting with the facility medical staff (give the MD and head nurse a "heads up" warning about family beforehand. They may not yet know your DH but they know this disease and have witnessed it in hundreds/thousands of cases. If the facility has a MC unit, it might have a secured outdoor garden which you and limited family can use for picnics and outdoor sits when the weather is good. And then limit the number of people who visit at one time or who can take him outside the facility. I appreciate your concern and love for SIL and the need for her support but there are lots of people who will and can provide support as one poster mentioned. If you are religious perhaps you can reach out to your temple, mosque, synagogue or church. Don't forget that the Alzheimer's Association has local support groups. Remember, that the inner DH, the one you married and know, wants you to be happy. So if you had talked about you taking an art class --take it. It would be what he would want for you and it will give you an hour a week where you can concentrate on something else. Hugs and blessings to you. We are all here for you and you will get through this stronger than you ever imagined you could be.

My heart breaks for you. I would suggest that you arrange a meeting with the doctor and include his sister and her husband. Have them hear directly from the doctor what is and isn't good for your dear husband. Forewarn the doctor what the purpose of the meeting is. If they have already spoken directly with the doctor, have a refresher meeting with the emphasis on the negative effects what they persist on doing would have on your husband. After that, hopefully they will accept, that what is important is that you are doing what is in your husband's best interests, not necessarily yours or theirs. If they continue to pressure, refer back to the doctor's instructions, and leave it at that. Continue to do what you understand to be best for your husband.
I understand how agonizing all of this is for you. Please know that you are not alone. My thoughts and prayers are with you.

You have all the support of our community here! We know how hard this all is and most of us have experienced the loss, anger, hurt and isolation you are likely going through. SIL is well-meaning, but is undereducated about dementia. She needs to learn a LOT more about what is happening and how it will progress. Until then, the best you can do is have that meeting and hope they can learn something and begin to understand.

One would think after that week, and esp Xmas day, how hard this is on him! She may be taking it hard, but watching his behavior, actions (esp closing the eyes) and general discomfort should be enough for one to figure this out!

Our mother begged my YB for 9 months to bring her back to her condo. After that, she forgot the condo and focused on their previous home. Somehow she knew better than to ask me as she never has done that! It has been 3 years now. YB doesn't visit that often, but I don't think she asks anymore.

Some people, given time, adjust and see the place as "home." Some don't. Often they beg and plead us to take them home, which is heartbreaking to us, but we know that it can't be done. The best you can do when he does that to you is leave the door of hope open a crack, telling him that his doctor ordered this for him to get better. When the doctor says you are better, you can come back. YOU know that isn't going to happen, but it gives them hope. Some will say it is false hope, but what good does it do to have to say no and why, over and over again, hurting them each time?

IF SIL doesn't come around and see the light about taking him out, ask the admin if you can stipulate no outside trips with anyone (except you if he needs to see doc, dentist, etc.) SIL can bring a home-cooked meal or treats and share it with him and her family IN the facility. They can try bringing in extended family, but it should be in small groups only. Too many can be overwhelming. They can walk around IN the facility, visit him in the common areas or his room, share good times, pics of old family, friends, etc. One can still enjoy his/their company while it lasts.

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.

I know how you feel- I had to place my sister seven years ago at the age of 68 ! When she first went there ,I would take her outside to sit in the gazebo & I would bring coffee & donuts & visit there with my husband ,myself & sister!
She could remember small things that we did together when we were young!Bringing her back inside after our visit she could not even remember the building we came out of- she thought it was a store!Once inside she could recognize the nurses & she felt safe knowing that!
Now seven years fast forward ,my sister does not even know me ( I am her only family) we have a brother ,my twin who lives in Manitoba who said his goodbyes a few years ago when he made a trip home to see our sister who is 5 years older!She did not know him!She knew him back then only by talking to him on the phone- not in person!Very sad!
My sister is now in a wheelchair ,can not walk anymore, has to have her food pureed , won’t wear her dentures, or her glasses or her hearing aids!She would hide one & she drowned the other in the shower!
She no longer can carry on a conversation, but she laughs all the time & contented!The nursing staff are so good to her ,so that is all I can ask for! There is no cure for Alzheimer's/ Dementia!Each & every patient is unique in their own way!
Most do not like change- they seem live in their mind , but do we really know if they do??"Hope this helps!

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.

It's a question of his overall wellbeing. Disruption to his routine during this settling-in phase is a bad idea: although he may (or may not!) enjoy his outings, he needs time and calm to adjust to his new surroundings and be happy there - the visits out are delaying that possible adjustment.

Could you compromise and ask them to hold off for the recommended period, or until spring perhaps when the weather is nicer? If they can switch to visiting him only, and they see that he is beginning to feel more at home, perhaps they'll feel better about the change.

Does your DH also beg his sister not to return him to the facility? It may be that that distresses her more than anything. Give her the same hymn sheet that you have to use: that this new home is the best place for him to live for the time being and (emphasise) she's looking forward to seeing him again on [say what day, even if it's only pencilled in]. Let her know how hard this is for you too, but that you have come to understand it's for the best overall.

I vow I am never again going to criticise anyone for being upset about someone she loves having dementia and trying to wish it away, or at least stave it off. Not even if I think she's not listening to better-qualified advice. But fortunately you and SIL have a good relationship and you are remarkably patient with her. I hope she'll come round and focus on improving her brother's quality of life within what's really possible *now*. This would be a much more productive use of her (and his) time than trying to turn back the tide.

I echo what others have said here. Make the facility the bad guy and tell SIL that they will no longer allow social outings in hubbys best interest. We say how scared my FIL was the one time the family brought him home for Christmas Dinner. After that we all visited him there and was just happy to see us all. Yes he still wanted to "go home" but it was much better for everyone that he remained where he knew where he was.

Pass along information you get from the staff, especially the RN. Let them be the "bad guy". Explain that less frequent outings and smaller, quieter gatherings will make your hubby feel more loved. He can't miss a "big event" that he isn't part of and wouldn't appreciate, kind of like not bringing children to formal events. Maybe you can create "visit" calendar, with the staff input, Then, everybody can "sign up" for visit days and outings as per your agreement.

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.

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?

As difficult as is it may feel to your heart, you have to listen to the staff. They are trained in dementia, deal with it every day, and know what's best for your husband. They probably have a list for each patient of people who are allowed to visit and those who are allowed to take patients off the premises. Limit those names to those who agree with your wishes and tell the others that their names may be added once they agree to those stipulations. Everything is so strange to your husband and consistency will be best for him. It's hard to accept these kinds of issues and I'm sure your SIL et al would love to have things return to the way they always had been. But they need to acknowledge and accept that they will not. Stick to your guns. My heart goes out to you and I wish you well.

My story is similar to yours. My husband has been in care since October. However the past five years has been a nightmare. Through all this his family have been possibly evil and my youngest son. My advice is do what you think is best. I recently told the lot of them “if you can’t be supportive stay away or come get him and let him live with you. “. You have to toughen up

It sounds like your sister and law and her husband would benefit from education about how someone with Alzheimer's processes information. The videos on YouTube by Teepa Snow about Gem stages are extremely good.

You can tell the staff at the facility that no one but you is permitted to take him off the grounds. They have to abide by your request. (and legally if anyone does take him off the grounds it is "kidnapping" as a friend of mine found out)
Tell SIL and her husband that the "medical" recommendation (Hospice) is that he not leave the grounds except for very rare occasions.
Tell them that visiting is fine (if it is) and that your husband loves her visits.
It is difficult doing what your brain tells you is best when your heart wants to something different

You have made the painful and difficult decisions involving his care based on your love for one another, and your understanding that his safety, health, and comfort needed to be taken into consideration In balance, even when you were coming to realize that your choices could not always be good ones.
Your feelings of being “between a rock and a hard place” are totally understandable, and that those feelings are shared by loving extended family members is understandable as well.
If you are able to do so, sharing as much information as you can from DH’’s medical personnel is perhaps the fairest thing you can do to encourage family members to get on board with your decisions and also to develop a mutually shared comfort level among all of you.
You clearly understand why SIL wants and probably thinks she needs to replicate the past, but unless she can begin to realize that her efforts may not work best for your husband in the here-and-now, she has no reason to change her mind.
If you can share some of DH’s technical information with her might it help her to become a little more objective about bringing her feelings into the present?
Doing so can also allow you to show her that your decision making is based on the solid recommendations of “the experts”, and on YOUR observations that although painful, the “expert”s’ suggestions have largely proven to be the best for your husband.
Through your compassion, you are team building out of the love you share for this man. A horrible disease without question, but as his team, all of you who are devoted to his welfare can bring Light.

My mothers aged care facility has private dining rooms available for free. Tbey can cater for relatives and friends of residents at a modest fee, and best of all they do the washing up and cleaning after guests leave! Alcohol, morning and afternoon teas are also available, all at modest cost. There is also an inhouse coffee cafe, private lounge area with billiard table, library or cinema.
It might not be the traditional home or restaurant atmosphere that your husband and his siblings previously enjoyed, but if this type of outing could be arranged it might not be so traumatic for him. He would still be within an environment he knows, if he gets tired,needs toilet, or is suddenly confused the staff would be on hand to help.
While time in a garden can be very soothing, socialising around a dining table might be a suitable alternative for people wanting to take your husnad into what is fast becoming unfamiliar territory.

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.

It is very hard. When my husband first went to memory care we went for car rides all the time as he loved them and the memory care was “home.” As he progressed and was wheelchair bound, I knew I could no longer take him out. Going over a threshold caused him surprise, so I knew the jolts and bumps on a wheelchair van would be too disturbing to him. It was very hard as I wanted him to experience the pleasure he used to have, but I knew he was passed that point. Your in-laws sounds like they are in the same spot, but you are right. Visiting on the grounds or going for a short walk at the facility is probably the best. I suggest that they bring him a treat and enjoy that with him for a special time. My husband also still likes to watch certain tv shows, so we sit and watch them on dvd, so maybe they could watch one of his shows with him. You’re making the right choice for your hubby, even though it’s hard. This disease is awful.

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 usual........to 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 Alzheimers.org .....doing so will benefit everyone who loves this man.

Good luck!

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.

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.

Do what is best for your husband, and you....doesnt matter what anyone else wants.....unless they want to accept full on responsibility for him if they remove him from his new home.

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"...