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!
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",
After this family meeting say to your SIL exactly what you told us here, you feel stuck between a rock and a hard place, this is so difficult for you to accept too because you want more time with your foursome and you want more "living life" time with DH but you want to do what is best for him and you really need their support. You miss It feels so lonely making these decisions without DH and not feeling like you have their full support either. Maybe even ask SIL for her opinion after hearing the professionals opinion, is it better for him if you join his current world and find ways to enjoy time with him on the grounds or keep taking him out and encouraging him to remember your world?
It is a horrible disease for everyone involved, sometimes I even wonder if it's harder on us than it is on the patient once they get get to that "own world" point. My thoughts are with you and your family, sending you lots of positive strength.
"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"...
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.
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!
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.
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.
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
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.
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 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.
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!
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.
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.
I understand how agonizing all of this is for you. Please know that you are not alone. My thoughts and prayers are with you.
Of course you need a support system, but you're the one who makes the decisions along with the family's input.
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.
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