My husband is 59 and has rapidly declined over the course of the last several months. We were approved for Medicaid in January and had him on several waiting lists for LTC facilities. Received call yesterday that a room is ready. I have been caring for him by myself for 6 years and work fulltime. I am mentally and physically exhausted. While I don't want to do this, I know it is best for his well-being and my well-being. Problem is how to tell his family and him. He doesn't think anything's wrong with himself although he can't find his way around the house, go to the bathroom by himself or sleep thru the night. His family doesn't think he is ready to live anywhere else either.
Help! Any great suggestions on how to break the news to both parties?
First of all, I'm sorry that the relatives aren't up on things enough to know that this step is necessary. Are you expecting flak from them? I'd just state it, in an email or letter, laying out the facts.
As for the husband--depending on his state of mind, you might be able to tell him that you're both moving because YOU need help with some things, or you might tell him you found a wonderful place for him to stay while you're out of town on a work commitment. These things need to be tailored to your husband's ability to comprehend, and what he understands about your lives.
Tell them that you cannot keep him safe at home. Yes, they won't believe you, so also tell them his medical diagnosis. Say this is what the doctor says.
Emphasize that he needs a very structured environment. If there are any problems at your home (bathroom is dangerous, stairs that pose a falling hazard) tell them, even if you are exaggerating. Yes, tell them you are exhausted but other things might get their attention. They probably can't see how much care he requires.
If you think you will have trouble from them take precautions. Instruct that LTC in writing that no one may take your husband away from the facility (and have it in writing). I know of cases where people visit, they go out for lunch, and then visit a notary public and get POA and MPOA from you. If things might get really ugly consider guardianship or conservatorship but that takes money and adds to your responsibilities.
And make it clear that this is YOUR decision, not theirs. And if they really object thank them for their offer to care for him at their house.
Fiblets are needed at a time like this as has been expressed by many on here. I have not had to face this yet, however, I would have very little tolerance for family members that have not carried the burden you have, but that probably is not the best way to response.
I would tell them the doctor has told you that your dh needs the constant care of trained people at the ALF which you can no longer provide, especially since you must work.
That is how I handled the no-driving situation with my dh. Some of the family members thought I was way off base not allowing him to drive. So....I said it was not my choice...the doctor told him he should not drive and I was only doing what the doctor said. They never mentioned it again.
Hi Shannon. Emily is correct. I had kept my relatives informed every step of the way including the various clinical opinions and diagnostic tests over two years. Some even had spent time w/ her and saw the changes first hand. Yet, when the time came to admit, several on both sides saw it as me abandoning her and no one saw a "nursing home" as a good place. Some have come around but some still saw it as my responsibility to care for her at home. I have feel I did what was best for her, first, and me second and now have more support.
As to the spouse being admitted and their reaction, all will be different. I simply told her this was her room and my room needed to be somewhere else, but I would see her. The first three days were difficult but through a very caring staff...they have done this many times..and the meds, she slowly adapted to her new home. Please trust yourself to know what you are doing is what is best..even necessary..for both of you.
before i would inform family- i would make the arrangements to get him into the ALF and go ahead and place him-hopefully he will adjust to staying there. after he is secured and adapting after a few days or couple of weeks then i would break it to the family. no need making waves if he decides he wont stay or if there are subsequent issues that the ALF decided it doesnt work for them either. as we well know some of our spouses if they arent that far gone and say they dont want to stay then the facility cant hold them. its why most of us try to wait til they arent aware of their surroundings as much. if he is willing say like jean21s spouse, and agreeable to go then its much easier. without a dementia diagnosis from a dr in writing, and a court order for guardianship you cant force him to stay as i understand it. as for family who hasnt been there supportively or to help care and offer respite, i wouldnt worry about what they say. i would take precautions as paul suggests and take POA and let them know in writing that no one has the authority to remove him for whatever reason from the facility unless you approve- or unless they are in need of medical emergency and need to get him to a hospital or such. those of you who are working and have to contend with the caregiving prior/post job and or have kids, its understandable that placement should probably happen sooner than later. best of luck shannon! divvi
Shannon, I will be taking my DH to a LTC facility next Monday. I am going to tell him he is there to have his meds adjusted to be sure they are the correct ones for him. I am hoping and praying it works because I don't know how else I will get him to go. We have talked about this a couple of times so I hope that is something he will remember. I do not plan on going to see him for at least a week. Good luck and God Bless.
This thread could not have come up at a better time for me...some great tips here Shannon.... that I will also take on board. Just today this morning at 11am, Dear daughter is coming with us... we have an appoinment with a NH to check out the facility, we have our name down for two weeks respite as soon as a bed is available then the decision to leave Dh there or bring him home..It will be intersting to see how Dh reacts to the place today. I am sick with worry and full of guilt...as to how to go about placing Dh when the time come
Thank you everyone for your great advice! The facility also has a lot of "rehab" people in it who have MS, brain damage, etc (average age is 52) so I think telling him he is there for treatment or something like that may be a good idea. It is not your typical "nursing home." Fingers crossed and praying the family will understand. If not, I'm with you Paulc - he is welcome to go live with them if they want. :)
Another reason to hold off telling family - if they are in denial they may pressure him to refuse to go. Otherwise they may try to sabotage your placement.
That's true Charlotte. Those in denial will resist being shown that it's real.
What our role was in life in relation to our spouses family, our own family, and our friends changes and it changes here too. I think this is harder for those that find it difficult to assert their will over others.
I can't think of a more deeply personal decision than this one between two people where only one can make the decision and at the same time a tougher thing to have to do. I also think having children makes this a much tougher thing to go through unless they're already supportive.
At some point in the AS experience I got tired of trying to get everyone on board and started seperating the herd. Those that weren't inside were out unless they caught on later (one did in my experience). In other words I didn't listen to them or worry about their reactions.
Instead I decided to phrase it that I couldn't do it at home anymore personally and we had gotten to a point where she (my DW) was overall safer and getting the extent of care she now needs.
I also allowed that this was very tough on me and was going to be tough on them - so it was ok that some of them expressed doubts or concerns. That wasn't challenging me - it was expressing their feelings.
I was lucky enough that I had two offers to go and look and get this done, and I had no one challenge me that I was willing to listen to. We have to understand like Charlotte said that some are resisting the fact of this and they will react that way. That shouldn't affect our own decisions but does make life harder for us.
I am convinced as many here have said that this is one of the hardest single things about AD for the spouse and if we don't have anyone else to talk to - then I urge you to talk here openly. This is a tough thing and we need some support from somewhere as we go through it.
Of course we are not there yet, however I wanted to express my thanks for all that you posted. Hard to imagine what it must be like, I mean, NOW seems to be over the top difficult, and to think of the pain of your beloved not living with you, of feeling like a traitor, and having to deal with others...
I hope if it comes to that I will be like you Wolf, let them express themselves and stick to my guns.
Shannon I am so glad you got approved for Medicaid and I offer a big prayer for strength in all this.
I wonder if some of their resistence to your LO being place is because then this desease becomes real to them. Then their fear, being family, that they might come down with it becomes real.
I know when I talk to my SIL about how her hubby feels about his sister and brother having AZ. She says he won't talk about it.
Definitely Amber. One of Jeff's brother's is still hoping that what Jeff REALLY has is Lyme Disease (which was one of the causes we investigated way back in '06, before he got diagnosed.) Thankfully, even that brother remains supportive, but of course they have a resistance to accepting the full truth. We really don't want to carry around a sense that maybe we have more genetic susceptibility than average to something so uncontrollably awful.
Our relatives live in another state when I told dh's brother that I feared he has az he just turned me off, I think, because he talked on about something else. I've since told him about seeing the PET scan and what it showed of dh's brain. I wonder still if he accepts - their sister had az and they saw her decline as she lived in their town and since he and dh are so close - such good friends - he just can't accept that dh will go down the same as their sister who has now finished her battle. We are not in the situation yet of placement but when that times comes, if it does, it will be a tough decision and it will be mine to make. Shannon - I don't see how anyone is a caregiver and has a full time job. My heart goes out to you and I hope all works out for you and your loved one. Only you know what's best for your situation no one has walked in your shoes.
I agree with Divvi, go ahead and do what you have to do before you let them know. It is not their decision to make and you do not need others second quessing your decisions about his care. I am sorry that you have reached this milestone in the journey but you have had a long 6 years. God Bless you and may his adjustment be swift. You can always turn to us for support. Arms around you.
Shannon, I am in agreement that placing my husband was the single hardest thing I have ever done. His family was not supportive in helping me, so I was nervous about how they would react. It was mostly his sister I was worried about, because she loves her brother so much and I didn't want her to think me a failure. I couldn't even call her, every time I tried I ended up crying, so I wrote her. Even that was extremely difficult and I apologized for my being a coward in advance for having to tell her in a letter instead of by phone. I anxiously awaited her reply, my heart was in my throat as I opened it, it said “I love you Nikki” Four simple words that said everything.
His children, well I called them. But in all honesty I was mad at them at the time so it didn’t trouble me too much what they felt. They all knew how abusive Lynn had become, they knew about the fires started, the wandering, the aggression……they knew I had suffered 9 TIA‘s that year trying to take care of him alone.
I asked for them to take turns taking their Dad for just one day a month so I could get a break. Just one day every 4 months per child, Never happened. Then and now I cant help but think if I had just had some help, perhaps I could have kept him home. So in a way I partly blamed them for us reaching “this point” … I had little emotions left to worry about their feelings. Sounds cold now, but nonetheless it’s the truth. Perhaps they felt some guilt as they were sad but supportive in my decision to place Lynn.
As for how to tell your DH, it sounds like you have a great plan going for you. Their “transition” is often easier on them than ours is for us.
Well, the day came to check out a NH...Dh, Daughter and i went along, me feeling very sad and anxious as to how Dh would react. The door opend and there stood before me was a lady i knew from craft a few years ago, that alone put me at ease. The lady showing us around was wonderful, she made it sound like a holiday place, Dh was calm and just seemed to go with it all. She showed us where the secure dementia ward was, 10 bedrooms all with it's own ensuit, at this time occupied by ladies...nothing fancy but very clean. Explained how it's run, with two carers on at night, each bed has a mat that they lay down by the bed at night time, so that if one gets up and out of bed onto the mat an alarm will go off to alert them. Four Dr's on hand, and nothing is done without letting family know first. The one thing that struck and was my concern is the ladies were just sitting there either in the small dining room or the lounge room doing nothing...I felt like they should have some sort of activities going on...seemed like such a small area to be cooped up in doing nothing.. I asked Dh what he thought of the place , and to my surprise he said "nice he could deal with that"...i don't think he realized that he might be spending time there...No beds available yet, I'm not even sure that it was the place for him, DD felt good about the place, she said it was "homely"...me, i feel very sad and sick at the thought of a bed becoming available, having to make that decision to place him will be my undoing..
Julia...please remember that nothing is in stone. If you decide it isn't for you folks then you can move him. I know my time to make this choice is coming and I can't begin to say how tough it will be. I will send good energy to you on this tough journey.
I have had a different experience; "it is not their decision to make". Unfortunately for me (and I wish it was my decision), that is not the case where I am located.
Here it is very much their decision. DPOA and healtlh care proxy are not enough; the only way to place is through guardianship which I have been told, by more than one lawyer, is long, difficult and expensive. Perhaps this is due to H's age and the protective nature of the state laws.
So many have told me: "just place him..."
I do scream when alone in my car and this is one major source of those screams. In my opinion, and in N's, H would be better off in placement, but it is not a matter of "just place him"; if it was, don't they think i would have already done this?
Amber, thank you, yes must remember it's not set in stone. I will check out a couple more Nh's...I just feel in my gut this one is not the one, I can't see Dh locked up with no male company, only another 9 ladies for company, that just sit and do nothing. the place is not very big.. he would hate that. I know the day will come when he will most likely be just like them, but for now he needs a bit of activitiy and interaction with other people, he's a lot better with other people than he is with me.