How do you force someone into placement?

Ed1937

I'm hoping I never have to do that, but there are signs suggesting that it might be in the not too distant future. God, I hope not!

Most of the time (80%?) she seems to be just about normal, knowing what is going on, and (mostly) how to respond to things. But then there is the other 20% to deal with, and I'm not sure I can do it unless things get at least a little better. 

This morning she went into the bedroom, where there is a potty chair. She closed the door, and had a bowel movement. She was in there a little longer than I expected, so I walked in to see what was happening. She had feces on one of her hands. I told her we have to go in the bathroom so she could wash her hands. She absolutely refused several times, and I had to pull (force) her into the bathroom to get her cleaned. She fought me all the way, and said I was hurting her. I was trying to get her in there as gently as  I could. This type of behavior is becoming more common, although not under these more extreme conditions.

About ten minutes later, she went into the bathroom to finish her BM. Another less significant mess, and she was able to clean herself with my instruction. And she washed her hands! I told her everything was OK, and I was going to take care of her.

She also refuses to change her incontinence underwear, even though she is urine incontinent, and she has had them on for more than a full day. Luckily, our daughter is able to talk her into changing. I can't do it without a fight. This is practically an every day thing. And of course there are less significant problems most of us face daily.

So my question is - How do you get someone into a MC or nursing home if they absolutely refuse to go? I don't want to do that, but I do want to be ready if it is needed. Other than the problems mentioned, I feel she is pretty easy to care for.

SSHarkey

Oh Ed, you already know that answer. We've read it here many times. The choice is not her's to make. It's yours. Absolutely the most painful decision you are now facing. I think it's time for another family meeting with you and your children. They need to understand the daily pressure you are experiencing, which they already partially do. But it's more than forcing hygiene behaviors and redirection. It's a big emotional and physical pull, constantly on you. They will help you and support you in this decision. The timing, the process, the choices. They've walked with you through all of this since the beginning. You need to seriously weigh how long you can do this, separate and apart from the desire to fulfill mental plans and promises to keep her home to the end. Praying for you! Suzi

Joe C.

Ed, This is a question I wrestle with all time time. For me it will be some sort of fiblet that she’s will be going somewhere of a few days. One that I am considering is saying we will be going to a hotel for a few days getaway. As we always did a lot of traveling and weekend getaways so I’m hoping this will be a good ruse. I have heard of people that use an excuse such as they have to leave the house for a few days due to a mold abatement project. My struggle is even if I come up with a story she will go along with, what will be her reaction when she realizes I’m not staying.

Beachfan

Ed,

I am so sorry that you find yourself in this predicament. I have no suggestions or ideas to offer.   Hopefully, it will pass as did your DW's resistance to bathing, and it will be only a hiccup along the way.  That is my hope and prayer for you.  I do, however, agree with SSHarkey regarding  who makes and who carries out the decision on placement.  Meeting with your family is a good idea, if only to get their input, ideas and encouragement.  Maybe your daughter, the miracle worker, will be able to work her magic again.  Who knows?

As far as placement, my DH is so compromised that I doubt he would resist a new environment or new "housemates".  I would miss him and worry about him, but, overall,  I think he would be content, not really knowing anything different.  Thankfully, he is an "easy" patient for the most part, so keeping him at home is not a problem.  

The only tip that comes to mind to help alleviate your situation is to remain calm, business like, but stern.  Short directives: "Come with me now.  We will clean you up. Don't argue with me." Mom/Dad  voice, teacher voice, expect that DW will comply.  (One day, DH may hit me with a frying pan, but for now, he is agreeable when I go into bossy mode.)  

I am rambling.  You are a great and caring husband.  I hope this all works out for you and for your DW.  Lynn 

LadyTexan

I don't think I have heard a story yet where a loved one with dementia has asked their care giver to please take them to memory care pronto.

I have heard a lot of stories of care givers looking for guidance on getting "buy in" from the loved one with dementia.  I attended a conference where this topic was discussed in depth. The speaker said never let a crisis go to waste.  Meaning, if the PWD has an adverse event such as a fall or a severe UTI that requires hospitalization, use the crisis as an opportunity to move the loved one with dementia into a SNF or MC. The explanation of course is that it is temporary. The speaker explained that most facilities have extensive experience easing the transition when loved ones are resistant.

My heart is with you dear friend. I am sure a day will come when I have to make the same difficult choice for my DH and probably my parents as well.

When it comes to my parents, I have been glamorizing assisted living for years. I tell them it should be called valet living. I tell them living somewhere where someone else cooks and cleans and does the laundry sounds practical and relaxing and plush. They humor me.

God bless you friend.

terei

Briefly, you choose a facility by visiting them, arrange for them to assess your LO + make arrangements for a move in date.

There is no need or advantage to discussing any of this with your wife.   Hopefully on the move date, you can enlist the help of others for assistance with moving items from your home to the MC while you take her there ‘to have lunch’ or other excuse to get her there. The helpers can move items to her new room.

While you are there, you explain you have had a phone call from the doctor who says she has to stay at this ‘rehab’ facility for awhile til her medication for her memory is ‘adjusted’.   An employee will take her to ‘show her around’ + you say,  goodbye, I’ll talk to you later, and leave.

She wont like it + will say she wants to leave, etc.  Blame everything on the doctor + commiserate with her ‘oh, I understand.  as soon as I can get the dr to agree, we will get you home’. etc etc etc.     If you are lucky, she will settle in to her new routine in a few weeks. If you think you will get her to agree to go to MC, you are wrong.  Take control of the situation + get your plan in order.

In the meantime, all your wife’s underwear should be replaced with panty type depends that can be disposed of.      

David J

Ed, I can’t add much to all the good advice. As a matter of fact, I read your post and yet again realized you and I are at similar places on the path. I worry about how I will handle the transition to MC when it happens. She may not know where she is, but she knows she is with me and wants to be with me. At least that’s s what she says 50 times per day. 

I don’t think we will last through 2021 before a move to MC. Her psychiatrist, who manages her meds and has been treating her for 20+ years, agrees, as does DW’s cousin, her closest relative. It doesn’t make anything easier having agreement.

I have few ideas for when the time comes. I will need to have a hernia taken care of at some point, and his would be an opportunity to have her stay at the MC “temporarily” while I get my operation and recovery. My recovery will take a long time I predict. Idea two is to have her cousin, a friend, or one of my brothers to help. We’ll do a couples lunch at the facility, then get her involved in an activity before leaving. I don’t like this one as much. Either way, I won’t tell her in advance. We’ll just go. 

Please keep us all informed what you do. We care about you as one of our “clan” and also will learn from your experience. 

Dave

Ed1937

Thank you, friends, for all the support. I did talk to the "miracle worker" today. She is 100% with me, and we will begin vetting, which should have already been done. I also told her I was going to call another family meeting, so everybody knew exactly what was going on, and listen to anything they have to say. I expect there will be a few tears, but I'm sure the support will be there. 

I had been thinking about telling her we had to get out of the house for a while because there is some type of problem. But that won't work. She will immediately know what is happening when she sees the facility. Then I'll be caught in a lie, and lose all confidence and respect.

I didn't reply to every post, but I want you all to know that I truly appreciate every one.

FWIW, I am not ready to place her. In many ways, she just seems too high functioning, although there is no doubt progression has occurred. This was the only time I had to physically force her to do anything. When we came out of the bathroom, she laid down on the bed, and cried. We have been married 63 years, and this is the only time I ever saw her cry, except when we lost one of our sons. Seeing that really got to me. I forced her!!!!

I have told her a few times that she did not have a choice about something. It simply had to be done. She doesn't like hearing that, but she usually complies. I always try to keep the mood light, but there are times it just can't be done. Thank you again.

Dreamer Lost

Ed, you are a wonderful caring husband and sound like you have great family support.  Whatever decision you make, I bet it will be harder on you than on her.  You will make the best decision you can with love in your heart.  That's all we can do. Peace be with you.

Ernie123

Ed I am so sorry you are dealing with this. My DW had to be placed 14 months ago when I could no longer care for her at home due to many issues, including violent delusional outbursts.  All my support circle, my children, Alzheimer’s counselor, doctor, all said the move was necessary for us both. As for the move, the advice I was given was just do it with no discussion and let the professional staff at the facility settle her in. It sounds cruel, but as you know there is no rational discussion to be had that will lead her to agree. It is easier for both of you. In my experience it was harder for me than her. She was confused but settled into the routines of the unit and enjoyed the constant social interaction provided there. It is hard but you have to step back and let her new caregivers take the lead. I was wisely told I was grieving because I was losing her for a second time: first to the disease and second from our home. I visit daily and now appreciate the move was necessary for both of us. Hopefully you have access to a well run dementia care facility. If you do you will eventually realize you have made the hardest choice of your life in the best interest of your DW. I am still terribly lonely having never lived alone. Covid makes everything worse. But when I see how well she is now doing compared to the disaster of our last few months at home, I know my loneliness is a small price to pay.

Gig Harbor

1.BM - get a bidet toilet seat. You will need to be able to plug it in to have warm water but there is a good chance she will love it. The warm water spray will clean her and there is a warm air dryer. She won’t need to use toilet paper. Get one with a remote control so you can turn it on when she has finished. A friend just got this for her husband and he took to it right away.

2. Placement - my friend looked at numerous places and settled on one. She told her husband that she had to have tests and remain in the hospital for two weeks. She said she found a “resort” for him to stay at where he would have activities and friends and good food. She explained that she wouldn’t be able to visit as she would be in the hospital but that she would call him everyday. After two weeks she went to visit him and he never asked about coming home. He actually thought she lived down another hall and that she went to work everyday. She did put him in a room with another man and they became friends and spent time plotting how to escape. It actually went a lot better than she expected. My friend knew it was time because she was stressed and absolutely worn out.

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harshedbuzz

I am so sorry you are at this place now.

Your situation reminds me very much of the dynamic between my parents as dementia took away the best of who he he had been to her. Like your situation, my dad was not at all cooperative with my mother. He would not shower, shave, eat meals or take medication for her which raised the degree of difficulty associate with mundane care tasks along with her blood pressure. He would do these things for me, in part to goad my mother like some difficult 4 year old and in part because he was a little afraid of me. 

Like you, my mother insisted dad was more high functioning to be placed. Sure he could "read" (hold a book properly, decode words but not retain what he'd read from page to page), he was remarkably verbal, and he had a fair amount of cognitive reserve. Plus I think my mom didn't want to see that the dashing love of her life didn't have the independent toileting skills required for nursery school admission.

My mother was frantic and I later learned that she was neglecting her own care during this chaotic time. She'd let some prescriptions run out and landed in the hospital twice the summer right after dad died. One consequence of her self-neglect was the loss of vision in one eye which impacted her ability to judge distances that resulted in her totaling 5 cars in 2 different accidents. She's currently being sued and she no longer drives which means she is not living the independent life she'd hoped for when stage 8 came. 

When the time came to place dad, I feel like she was looking for permission or for someone else to make the decision, so I pushed for placement. I toured a dozen of so facilities and then took her to see my top 3 choices. I took the nay-saying phone calls from dad's brother who was quick to place his mom and both his in-laws as soon as it was appropriate. Perhaps the Miracle Worker can help you with this aspect of her mom's care, too. 

I came up with the narrative to get dad to the MCF and made a plan with the staff there. My mother truly believed dad would sense he was "going to a home" as he called them and flip out. It went as seamlessly as the staff assured me it would. I told dad we were taking him to see a new doctor to help him get stronger on his feet (the doctor would prescribe PT at the fancy rehab center), we pulled into the MCF parking lot right up to the front door where the manager welcomed us in and the director of activities took off with dad placing him in a seat between 2 of the more sociable residents for ice cream and a sing along. 

The next day he was angry and for the first couple weeks, we needed to visit in public spaces to avoid his aggression but it soon passed. Over time, dad came to think of it as home and believed his brother and cousin lived in another wing along with my mom. During visits he would regale me with tales of nights on the town at the club downstairs and afternoons at the pool or golfing. He seemed content. And he was clean and cared for because he allowed the staff- who he believed to be medical professionals, to help him. In retrospect, I wish I had pushed harder. Dad certainly would have gotten better care sooner and perhaps my mom's health would have been preserved.

HB

M1

Ed I think of you as the mayor of the forum, I think you were the first to respond to my first post.  Just like my neighbor across the street is the unofficial mayor of our little community.  It's obvious that many here feel the same.  We all care for you, and as I've said before, it seems many times others have more objective views of our situations that we do ourselves.  So as SSHarkey said in the first response, it's time whenever you say it's time.  It seems to me that there are more success stories with placement here than there are failures; hopefully that's somewhat reassuring to you as you face this.  While the change is hard for you as well as her, she may thrive for a while.  I think what HB said about her dad is relevant, he had a lot of cognitive reserve and did well.  And you may be able to take a deep breath and go see a movie if you want.  Go to church, go to the hardware store without having to rush back, go to lunch with a buddy or one of your kids and grandkids.

Take care of yourself and I wish you well whatever you decide.  

White Crane

Dear Ed, you are such a wonderful husband and caregiver to your dear wife!  I know this is a difficult and heart wrenching decision for you to make.  Praying for you and for her.  I know you will make the best decision for both of you.  God bless you.

Michael Ellenbogen

Ed you are defiantly one of the caring people here and I do think you can do it on your own with little more education by talking to the right people. I really believe that someone like Teepa could defiantly teach you a way to deal with that situation a lot easer. She’s has worked miracles for so many. I find it a amazing on how certain tips can change everting for some of these folks.

ladyzetta

((((Dear Ed)))))

I am so sorry you are having to deal with this. You are such a sweet, good, loving husband I know how hard this has to be on you. What ever you decide to do will be the right thing for the both of you. 

When the time comes to place DW I really hope you can find a place close to where you live because I know you will be spending a lot of time there. When I placed my DH I was lucky the small town I live in has a facility only 7 miles from our home. I visited every day and they all became my new family. I got so many hugs from the residents they all needed hugs and I loved them all. 

You are a real loving person you will be comfortable caring for your DW in the facility. I felt very comfortable there and with all the love you have you will fit right in. I was there so much my DH thought I was one of the caregivers. Please reach out for help you need it. Hugs Zetta   

Ed1937

Thank you for the posts. It really opens my eyes to see what everyone had to say.. We'll be OK for a while. Today is totally different.

abc123

Dear Ed, 

My Mom is relatively easy to care for. As long as she’s fed on demand she is okay. My 84 year old Dad has been caring for her for the past 8 years. He does EVERYTHING. She has recently become incontinent. Tomorrow I’m going to purchase a bedside toilet. She does not understand about the depends and constantly takes them off and throws them wherever. That’s not even the point of my post Ed. The point is my Mom’s Mom lived to the age of 94 with Alzheimer’s. My Mom is only 80. She could possibly do the same. I’ve already lost her. Yes, I adore her. I want the very best for her. BUT I also want the best for my Dad. This disease is killing them both. My Dad counts too! I want him to place my Mom but he won’t. My Mom will be a vegetable and my Dad will just drop dead one day from sheer exhaustion. Talk with your kids, I think you’ll be surprised at the level of support you will have in favor of placement. 

Please take care of yourself too. 

sandwichone123

Lots of good perspective here. The one thing I haven't seen yet is that after your spouse is placed and has had time to settle in, you can visit and "date." Your relationship can improve, within its obvious limits, because you're not working and serving and the things you do for her become extras, not chores.

Davegrant

Ed, Thanks for your post(s). I really learn a lot from following you as I care for my DW . I am having so many of the same experiences. I am usually on a merry-go round of emotions as my DW behavior changes. DW is highly verbal yet displays anosognosia when it comes to this disease. Your posts help me to feel that I am not alone and what I am seeing is valid.

Marie58

Ed, I copied your reply to me when I posted about the difficult decision of placing my DH. You said,

"I'm sorry it is so hard. This disease is relentless. But you have to take care of yourself. It's better to be able to visit him instead of completely losing your abilities to do anything for either of you. It's good that you realize it's a heart vs. brain issue."

Ed, you are such a kind, wise, and loving person and caregiver. (And I second the idea that you're the mayor of the forum. )  You will know when it is time. Don't completely exhaust yourself as I almost did. Also listen to your kids, who see things more objectively than you do. In the meantime, visit MC facilities and get on a waiting list or two. In our case, we would have stayed at the top of the list had we declined when the opening occurred. 

Blessings to you and all of us!

abc123

Ed, you are most definitely the mayor here!

Another prospective on this subject that came to me last night, I want to share with you and everyone else here.

It’s a would be perspective from my Moms point of view. 

She would not want my Dad to continue this journey in this manner. Meaning she would not want him to keep her home past the limit of his ability to reasonably care for her. This would truly break her heart. Ed, I wish you the best. I mean no disrespect to you, ever. 

Ed1937

Again, thank you all very much. When the time comes to make a decision, I will keep this thread in mind. Maybe especially my own advice on it.

Joe C.

Ed, If you need a campaign manager, I’m available.

JJAz

I'd vote Ed for Mayor!!