By LSUshad - Is it time for MC?

LSUshad

This is my first post. My DW was diagnosed about a year ago. She had been showing symptoms for awhile. She is 69, a retired school psychologist. I am 70. For several years I have been handling all of the financial, tax and home maintenance issues. I do almost all the cleaning and cooking. I have been giving her her medications for a couple of years now. She used do most of these things herself, or we did them together. Now, there are times when she is confused about where she is and who I am. She often thinks I am a professional caregiver. She has asked me if I am married. A few times she has asked me my name. On occasion she feels afraid of me. At other times she wonders if it is ok for us to sleep together (we have been married for 48 years). She often speaks of wanting to go home. She frequently wants to know what our plans are for the day. I assist her with dressing and sometimes with showering at bedtime. After driving off late one night she was stopped by the local police. I took her keys and eventually we sold her car. She tends to exhibit sundowning behaviors in the afternoon.

I have a memory care center near our daughter that has accepted her. I live about a hour away from the facility. She has long term care insurance so that is a blessing. I am posting this because I would like to hear from others who are experiencing (or have experienced) this transition to MC. Based on the symptoms and behaviors I have described, is it time for transition to MC? Thanks so much for your thoughts.

Pat6177

LSUgrad, welcome to the forum. I know others will respond (tho maybe not till tomorrow!) but I’ll give you my 2 cents worth. I have not placed my DH yet. So far, we’re doing ok together at home. But I have read many threads on this forum as folks go through what you are currently experiencing. It seems like there is a point for each couple where it becomes clear that it’s time. A combination of the PWD’s functioning, the caregiver’s coping and the option of AL/MC. Also, for some, it is a question of safety for either the PWD, the caregiver or both. If you are wondering if it’s time, then it is probably time. I will say that it seems that the people that procrastinate have a harder time finding placement and the transition isn’t as smooth. Be careful not to allow guilt to cause you to put it off (easier said than done). This forum is a good place to work your way through the decision.

M1

Welcome to the forum. Sounds like your wife is about where my partner was last spring. She didnt always recognize me and had forgotten most of our 28 year history. I was looking for home help and had just made a deposit at a mc facility to put her on the waiting list when she threatened violence when I wouldn't let her drive. This landed her in the hospital and the mc i wanted wouldn't take her. She has not transitioned well and it's been a very difficult year. So to me, sounds like you're close, but i agree that it's different for every couple, have to factor in your capacity, her personality, what other supports you have. We were also fortunate to have the funds for private pay but didn't have family members close who could have helped keep her at home, it was all on me 24/7.

Joe C.

LSU, Welcome but I’m sorry you needed to seek out our community. I place my wife 17 mounts ago and prior to placement I was experiencing everything you described and a few other issues. Prior to placement I was taking care of all DW’s personal needed including bathing, toileting, dressing, medications, etc. I was often “the bad guy” because she did want to take a shower, brush her teeth, get dressed and so on. I procrastinated about placement for several years because I did not feels others could care for her I well as I could. When I finally placed her it turned out to be the best thing for her. She suddenly had socialization, engagement and friends! Although I could take care of her personal needs at home, I could not provide the life enrichment that the MC community could. She is indeed happier at the MC than she was at home. People had told me that once I placed her I could go back to being her husband rather than her caregiver. I did not understand at the time what they were talking about but it is true that now I feel more like a husband than a caregiver. Good luck with you decision.

Ed1937

Hello shad. Welcome to the forums, but sorry you have a need for them. You came to the right place for support and understanding.

When it comes time to consider placement, you really can't have someone else tell you that it is or is not time. The exception might be someone who is close to you, and can clearly see that caregiving is impacting your health, either mentally or physically. This is a decision each one of us will probably have to make at some point. Only you know how you're coping, and whether or not she would likely get better care in a facility than she would at home. Some caregivers seem more able to handle the rough patches than others. But there is no shame in saying you have reached the point for placement. Every caregiver is different, and every person afflicted with this disease is different. Sometimes the caregiver is doing OK, but their LO would be better off in a facility. The decision is a hard one to make, and I wish you luck. The posts above give you things to consider.

toolbeltexpert

LSUshad welcome to the forum. I placed my dw 9 months ago. You sound like me is it too soon? It is different for everyone. It definitely is better for my dw because all the triggers of home are gone. She is slowly getting more into the routine at the memory care. But this isn't just about our lo. Are you ready? Emotionally this was one of the hardest things I ever had to do. I was sick for 10 days after and lost over 30 pounds in these 8 months. I believe I am turning the corner. I sold our farm,just closed about 2 weeks ago so I could be closer to her and fund the care. Caregivers take the brunt of everything. By your post I can tell that is the same with you. Doing everything including making these decisions. You didn't mention whether you have all the documents, like a dpoa but getting those is really necessary as well. Sounds like you might have because of the ltc insurance.

Keep posting and reading we are all here for you.

Stewart

LSUshad

Thanks to each of you for your comments. Others have shared with me some of the same things that you all mention. It really is a balancing act of determining whether the care I provide is better than what she could receive in MC. Right now, I’m handling it. The cost, however, is my own health. I don’t have time to exercise (can’t leave her by herself), and I have gained lots of weight. As she declines, there will be things that I cannot do as well as MC.

One comment above mentioned how things at home trigger her. She feels isolated here (she really isn’t) and said she has no friends and family. I do think MC will give her more interaction with others and more activities she may enjoy. Thanks again to all who have responded to my post.

Pat6177

Is there an adult daycare near you? That might give you some respite and give her some socialization.

LSUshad

Unfortunately there is not one close by. Good suggestion though. Thank you

Vitruvius

Whether the time is right to place your spouse is as much about you as it is about her. Your situation sounds very similar to mine about two years ago. So I can't tell you if it's time for your wife but I can tell you our story and you can glean any insight if there is any. 

My DW and I are now 71, she was diagnosed when she was 69, but that was clearly delayed due to the pandemic interfering with access to medical care. When she was diagnosed they pegged her for EO. Her diagnosis was for a fairly rare variant of FTD, Semantic Dementia. I retired in order to care for her full time. At that time she was capable of her ADLs with only minor assistance. Up to that point I was very active, low weight and in great health. But like you caretaking meant no more exercise and I also gained a bit of weight.

My DW declined much more rapidly than most here on the forum and her care became more effort as she raced through stage 6. I never minded all the physical care she needed, even taking care of her incontinence. It was dealing with the increasing delusions and hallucinations that stressed me out. She also stopped recognizing me and asked questions such as was I married. This left her in a state of near constant minor distress. The triggers of being at home left her feeling she should be doing something I think but she didn't know what it was. She was never violent or aggressive, more agitated and frustrated at times. Reducing her distress was my goal, and my stressor. 

Since you're new here you haven't read my posts about how the stress caused me to develop a life threatening disease. I'll spare you the details, but suffice to say that I knew I was stressed but I thought I was managing it. My body knew otherwise.

So seven months ago it became necessary to place my DW, my DD could see it needed to happen and encouraged me. And it happened just in the nick of time, just a few weeks later I ended up in the emergency room.

I thought for sure my DW would object to being placed in an MCF, but remarkably from the moment she got there she never questioned being there and has never asked to come home. She has always been much calmer there and they take excellent care of her. I visit every other day.

As I said earlier she is moving very fast through her dementia and is now beginning to have trouble swallowing and so she has been placed on hospice at the recommendation of her neurologist.

I don't think there is any singular moment when it suddenly becomes "the time". I believe however that it was a loving act to place my DW and was something that, hard as it is, was best for both of us.

LSUshad

Thank you so much, Vitruvius! It sounds like our spouses have some of the same symptoms. My DW, just today, asked me where I am from. She asked me “what is your full name?” She asks me if I am going to spend the night, and how many other people I help. She also asks me if I am married, and sometimes argues when I tell her that we are married. But then, a little later, she seems to be more normal. It is simply a baffling disease.

It might make the decision to place in memory care if my wife was incontinent or unable to complete her ADLs. But she is able to do most of them. I help her get dressed because she has a hard time choosing what to wear. If I wasn’t cooking her meals, I’m not sure what she would do. But she can feed herself just fine. I am still trying to figure out the timing. But like you, I am beginning to become concerned about my own health.

HollyBerry

I recently had a conversation with the NP who sees my partner and asked for her thoughts on when I should start looking at MC near us. She echoed what others here have said - prioritize your own health! - and also said not to feel like I have to wait until things are really bad. That surprised me a little. I haven't taken any action yet but maybe it gives me permission to think about it. The process took over a year to get my mom into the AL we liked, so I suppose it's never too early to start the research.

LSUshad

Well, HollyBerry, tonight I took a major step. My DW had a terrible night last night. Very agitated and angry, very little sleep. This morning was rough too. Then this evening she said that could no longer stay in our house with me. This is not the first time she has said this. But something in me clicked. I said OK. You won’t have to. I took her to our daughter’s home, which is very close to the MC facility she has been accepted in. I returned to our home and will be preparing to move her into Memory Care, perhaps as early as this week. I have left messages for the admissions director to contact me, or I will call her. We will work out timing and I will figure out what I need to take over to the facility. I have been delaying this decision, but tonight I realized that for her sake and mine, this is probably the best thing to do.

Jgirl57

I am up late reading posts . Stay strong as you go through the mechanics of this move .Prayers to you for making this wise choice.

M1

Will be thinking of you too. I know what you're facing. Keep us posted how it goes.

Ed1937

Just dealing with making the decision puts a lot of stress on you. But after placement, that stress should be lifted. I hope things go smoothly for both of you.

Denise1847

One thought here - our financial counselor told me to consider the duration of the disease and the scope of the long-term care insurance. He said he has seen spouses placed in MC and living longer than the insurance pays out. As many members have pointed out, you need to keep your loved one's peace/care and yourself as the priority.

ghphotog

We are going through the exact same scenario and my DW exhibits all of the same behaviors. One minute she loves me makes me promise I will never leave her, the next she hates me. She no longer knows we are married and own the home we live in. She still remembers me, close family and friends but that also is slowly fading. She shadows me everywhere waiting for instruction on what to do next.

I place her and my mom in Daycare once a week and even though she begs me not to take her, when I pick her up she is all smiles. That makes me wonder if she would actually thrive better in MC. My mom lives with us and she is a major, major trigger for my DW and vice versa so one of them has to go to MC soon but I don't have the heart to make those hard choices for them.

I just started seeing a therapist to help me overcome the guilt I will feel but she is just a young kid and doesn't have the life experience I do but she seems to know what she's doing I guess.

It's a hard choice I have to make soon and I'm not emotionally ready to make those choices even though I know it would be best for everyone, especially myself. I'm a grown man and wish I was a different person that just did what had to be done even if they are extremely hurt emotionally by it. . . for the time being.

I'm not that guy and I have too much empathy for them that it makes this so much harder.

Vitruvius

ghphotog, I'm just going to give you my humble opinion so please feel free to ignore it.

I think that as a caregiver we sometimes project on our PWD how we would expect a normal person to react. Like when you said that an action you take for their ultimate benefit might result in their being "extremely hurt emotionally by it". I'm not so sure this is always true. Your LO may react very negatively to say placement in an MCF, but maybe not. When it got to the point I had to place my DW I absolutely expected a very negative reaction, but that did not happen. And even if it did, it might be just as likely be a reaction to the radical change that it was, and not a reaction to some sort of betrayal. I believe that doing what is best for your PWD is a very loving act, even if your PWD can't see that.

Ed1937

Ghphotog, please consider your own physical and mental health. If you go down, where does that leave both of them? Many times it's harder on the caregiver to make the decision than it is for the PWD to be placed. It's too bad we can't know how they'll react before placement begins.

Davegrant

I seem to have hit the jack pot on this post this morning because this discussion is exactly where I am at with my DW. We went to a day care last week and it was a good program and they said DW did well through the program activities. I applied for some help from the VA but my DW is not a veteran as I am. I am having a hard time making a decision since they are so many factors and my DW is negative towards everything and has some strong attachments issues to me, even though she fights everything I tell her. I have been having family come over and that has given me some relief.

I do feel that the ball is in my corner, and I plan to gather more information.

Dave

Davegrant

LSUshad

I put my DW in memory care yesterday. She was frustrated and angry when we woke up. (That has been her morning pattern lately). I basically had to get her dressed. My daughter and I told her that we were going to take her to a new doctor who can help her with her feeling scared and out of place. By the time we were ready to go to the MCF, she was looking forward to it. The staff received her with smiles and open arms and treated it like it was a routine visit (temp check, COVID test, etc.). We left her in their care and walked out. I wept as soon as I got into the parking lot. Fortunately my counselor was available so I went and spent some time with her, and that was a huge help. She told me that this transition will be harder on me than on my DW. That may be true. Right now it sucks, and I miss her and worry about her. I pray she won’t reject me. They said I can’t see her for two weeks. Everyone says that this needed to happen, but it is so hard.

RickM

I did the same yesterday, moving my DW to a MC near our home. This is indeed heart wrenching. I was spaced out and couldn’t do much the rest of the day. The staff has left it up to me as far as visits. I originally told her that this is a trial/respite period of 3 weeks. I will be out of town for the second week. Our son and I will visit today. It’s so hard to know how to proceed as far as visiting. Best wishes to you. This is so hard.

Jgirl57

LSUshad, big hugs to you for doing what you knew had to be done . There several of you in the “same boat “. Hope you can all find comfort in this

LSUshad

https://alzconnected.org/discussion/comment/170801#Comment_170801

Hey Rick, it’s interesting that different MCs have different visitation recommendations. They called me tonight because they couldn’t find the power cord to her CPAP machine. I spoke with her briefly and she said she was miserable and that she wanted to see me. I told them that she had probably hidden it or packed it. They went and looked and found where she had hidden it in with some clothes she had packed. They called back and said she was in bed and was doing ok. I think in my case, it is best not to visit for a while. I want her to get settled in. And if she asks me to take her home it will be hard for me to say no because I miss her so much. I have that spaced out feeling too. Sucks.

LSUshad

https://alzconnected.org/discussion/comment/170822#Comment_170822

Thank you Jgirl. It is good to share with others going through the same things.