Deciding to place DH in Memory Care

Auntie Lu

I am 69, my DH is 78. He was diagnosed in 2019, but, as with most of us, symptoms started a few years before. His mother was also victim of this horrible disease and I was the main family member who cared for her before she could no longer live at home. Deciding to have her go live somewhere safe was much easier as I/we could just say, "You are not safe living alone any longer." Now, as my DH progresses thru this, I am wondering how to tell him I can no longer take care of him as he requires. He becomes argumentative, then contrite: "I'll do better, I won't be a bother, etc." We all know the memory of such conversations don't stick. Although he is not in final stages of the disease, I am weary. I do have help 2-3 days per week, 3-4 hours each time. He is "ok" with the caregivers, but tells them he doesn't need them and often tells them to leave. Upon my return, he is agitated and nasty to me. I may have had a reprieve while I was away, but the behavior when I return is waring on me. His sleeping patterns have changed in the past few months and he is often hard to get up. We retire between 9:30-10pm and I try to start waking him between 10:30 am and 11 am. He often won't get out of bed until after noon. When he gets up, he wants to go somewhere, anywhere. He is on seroquil, Lexapro, along with Aricept and Nemenda. I have begun to look for Memory care available in my area, as much for my sanity as for his needs. Most of the articles are written about placing a parent, not a spouse. Any tidbits of wisdom are welcomed.

Dio

I just placed my DH 3 months ago. It was a difficult decision, but it was time. My health was waning, and at that rate I'd probably die before the disease took his life. How I wished I didn't have to place him, but I simply couldn't keep up the daily abuse, mentally and physically. I don't think you need to justify placement. When it's time, it's time. You truly only need to answer to yourself. Keep a journal of events to remind yourself of the whys in case you have regrets down the road. I did tell DH that I needed to secure his long term care in case something should happen to me, as we have no children. And I'd only tell him or talk about it when he was lucid or semi-lucid. I was quite transparent throughout online research but shielded onsite visits from him. And definitely "camouflaged" the entire placement proceedings with the help of a friend. Since we don't have long term care insurance, the monthly fees are out of pocket and I'm feeling the financial pinch. But it's worth every dollar to be able to have some semblance of my life back.

Auntie Lu

Dio, Thank you for posting your experience. Giving myself permission to do a lot of things is difficult. I am working on getting out of myself, but the feelings of guilt and second thoughts plague me. I have copied your remarks to help me remember. Everyone is different, yet I long to have someone walking this path with me. I don't feel "alone", yet I am alone. Kids are younger and busy with raising their own kiddos and making a living. They do what they can. Thanks again. I do appreciate your comments :)

Ed1937

Very few people want to put their spouse in MC. But there is no shame in it. If you feel it is time, it is. As Dio said, you don't have to justify it to anyone. Your health is every bit as important as his, and understanding this is absolutely necessary. It won't be easy, but probably easier than getting out of a hospital bed every morning. I wish it were easier.

Dio

Auntie Lu, we caregivers indeed walk a very lonely path. No matter how much support we have from those around us, including this wonderful discussion group, it is our own cross to bear on this wretched path. You may even feel as if the waves of emotion will drown you, taking away the very breath that sustains you. But know that you will survive. While it is entirely up to every individual to ride these waves, there are lifelines abound. I still go through weeks at a time of spontaneous crying to be suddenly replaced by calm from nowhere. I'm still learning to ride the waves. Come here often. You may be alone on your path, but you're not alone. The collective experiences are invaluable. And the strength you have will amaze you.

M1

There are actually a number of us on the boards with spouses in MC, and yes, it's very very painful. I have a list on my computer-i call it Victoria's list because she suggested i do it-to remind me of all the reasons why i had to. It starts with the fact that she threatened to come after me with a knife when i wouldn't let her drive....to the store to get cat food, because she'd fed our two little outdoor cats 24 cans of food in three days. And goes from there. It is never an easy decision and in fact is harder i think if you've had a loving and happy relationship, which we did, in spades.

If you are one of the lucky ones whose spouse adjusts to the mc environment, in theory your life should be easier and better. I have not had that experience, but some do.

SDianeL

So sorry you are going through this. I'm afraid I'm right behind you. This last week has been hell. My DH has ranted & raved & screamed. He's like a child having tantrums when they don't get their way. I know it's not his fault, it's the disease but I'm constantly on the verge of tears. Waiting for the Geri Neuro Psychiatrist office to call for an appointment to adjust his meds. I waited as long as possible to ask for meds. He just started on Resperidone low dose at night and it seemed to make it worse when it wears off. I can't imagine making the decision to find a MC facility. My DH is also 78 with possible VD. His anger & agitation has really increased the last couple of months. He won't listen and I'm afraid he's going to get hurt. Please keep us posted.

sandwichone123

I put my spouse in memory care almost a year ago now. We're young and I had to choose between keeping him home and keeping my job. He loved to go for walks, but was having more trouble getting along with people and more trouble staying safe at home.

I remember those conversations about "I'll be good," "I'll stay home," and whatever else he thought would make me bring him home--pulls at the heartstrings, for sure. Remember that whatever you choose, the trajectory is the same for him. I think my spouse likes being around people and having activities he can be successful with, and I know I like having a job and a life.

Auntie Lu

Ed1937, Your words made my breath catch in my throat. Thank you for your candor and insight. I need to hear these things.

Auntie Lu

M1, Victoria is genius! I am starting a list! I am so thankful I decided to post my situation. Although not threatened with a weapon, I have been kicked out of our home, had car doors slammed on me, pushed, accused of all kinds of things and so much more, the emotions that I experience that go along with such behavior runs the gamut. "Putting it out there" is already giving me freedom I haven't felt in a long time. Thank you for sharing.

toolbeltexpert

Auntie lu I have placed my dw, and only you can place your dh. You're not going to discuss it with him, you're not gonna tell him where is going. You already know those conversations won't stick and will likely wear you out even more. @M1 case is a perfect example it's been so hard on him until recently, and now new dynamics have kicked in. We all experience some form of dementia that trys to steal us as well. You have to take care of you,it's an emotional roller coaster with guilt in the lead car and depression in the back car with anxiety in the middle with you. I know this sounds terrible, but somehow you will get thru it. There is no way around it but thru it. I am usually not this blunt, but I had people tell me things like this and I took it with a grain of sand. I am still starting to heed some advice that I have gotten many times. Just over a week ago I went on a trip home and it was the first time I didn't see my dw and didn't talk with her. I survived and actually got some relief from anxiety. But it's back again. New progression with my dw is causing me to wonder if she's gonna have a bad turn? Caregiving doesn't end when they check in, or at least not all of it, it does allow you to focus more as advocate.

And definitely save anything you have that has pointed you to place. I have many videos that I never want to watch again ever. I'll delete them if I survive to her passing.

I am truly sorry your having to find this forum,but it's a life saver. Keep posting and reading.

Stewart

Elshack

Auntie Lu,

I placed my DH a yr ago due to severe bathroom issues and a broken ankle caused by his wandering out to our car and trying to get in the car in the early hrs of the morning. He is a sweet man who never raised his voice yet I was exhausted trying to take care of him 24/7. He had brain surgery for brain bleeds 5 yrs ago after a fall which put his moderate Alzheimer's into a more severe stage. Now hospice has been called in. I see him in his memory care room every day but I know if I continued to take care of him I would have suffered greatly physically and emotionally. He is 93 and I am 83. It is a relief to know he is being taken care . I know I took very good care of him for 4 yrs and I hope you can make peace with yourself when you place your DH. You are not alone, Auntie Lu. We all are on this road together ! You must not think this is a selfish move on your part. Your life and health is as important as his !! Visit this site often for encouraging words.

Auntie Lu

SDianeL,

My heart breaks for you every time I read over these posts. How are you doing? I pray for you and others who are dealing with the possibility and probability of placing DS's in the care of others.

For me, it is beginning to feel like an out of body experience. One day the behavior of DH is intolerable, then it's better, then it's bad again. The image of the disease being a rollercoaster is ever on my mind. (I still haven't figured out if the uphill, down rush or loop-de-loops are the good or the bad. I guess it's different for each of us.) Thinking about and preparing for "the day" is as exhausting as dealing with him. So I feel empathetically for you, as I too walk this journey.

This space is encouragement for me. I hope it is for you.

Auntie Lu

Auntie Lu

toolbeltexpert,

Thank you for these words: You will get thru it, not around it but thru it.

I have thought about this for many days and it has been an encouragement to me. Like the saying, "The difficult times make us stronger," I can't help but wonder how strong I need to be. I'm not strong enough yet, although, I've got the strength to do this moment, this minute, this hour, this day...

I appreciate your "bluntness." I've read many books and articles about the disease. Most tell you "about" what has happened to others and "about" how behaviors may be. When I read the book, "My Two Elaines," by Martin Schreiber, I was able to say, "That's what I see" and, That's what DH does!" Being direct and blunt in this journey might make some of us cringe, even hurt a few feeling initially, but in the long run it is best.

I will need to make the hard decision of "when" very soon. Getting everything together that is needed, procuring a desired MC that has an available room, fretting about how DH will react, and wondering how exactly is this going to happen all weigh heavy on top of the day-to-day experiences.

Thank you,

Auntie Lu

SDianeL

@Auntie Lu Thanks for asking. My heart also breaks reading these posts. We're doing about the same as you. Some days are OK, some are hell. He cried at breakfast the other day and said he's scared. It broke my heart in two. I'm scared too. The Neurologist put him on Respiradone low dose at night. It is helping him sleep. We have an appointment next week with Geri Psychiatrist who will prescribe & monitor meds to calm him. So far he can care for himself, taking showers, shaving, etc. So like you, I just get up each day and say "not today" ... For just today I can cope and care for him. I know one day it will become too much and will be a different answer but for just today.... Praying for your strength. Hugs.

nannyritch

That’s where I’m at. Got to get Medicaid I think first. Been hard to find a place that’s takes men Alzheimer patient with just Medicare. Hanging on

Walter0617

Nannyritch, I'm in a similar position. My DW is early-onset. We are both 69 and have been on this journey for about 6 years. She is stage 6. Some days are ok, some are difficult and some are awful. I, too, am looking into Medicaid. The only way I can afford Private Pay is to sell our home, which my elder care attorney has advised against. Some days I think it is time to move forward with placement and some days I'm not sure it is time yet. It can be such a roller coaster. DW often doesn't know me or thinks I'm her father. She tells me she wants me to "get out of her house" and has accused me of beating and abusing her, which, of course, is a complete delusion. She hasn't showered in over two years (though she does do pretty good taking sponge baths in the sink), wears the same clothes for weeks at a time and gets very agitated if I try to get her to change them. I still work part-time and have to rely on my adult sons for help. I know I'm asking too much of them. I have found it hard to get much information from Medicaid. For example, Medicaid has their own doctors who decide if the person meets the qualifications for placement. Even if my wife's neurologist recommend placement, the Medicaid doctors may not agree. It is all very confusing.

nannyritch

I know your feeling. I was also told Medicaid can take up to 18 months.

loveskitties

For any of you trying to navigate Medicaid, you might want to contact an elder care attorney who will know the ins and outs of how to qualify and what the rules are for your particular state. Many will do an initial consult free.

Medicare does not cover memory care placements. It will cover medications and prescribed equipment such as hospital beds, wheelchairs and walkers, etc.

If you are going to need to do Medicaid placement, it is never too soon to get on the wait list of several facilities. The number of beds allocated to Medicaid are few. If one becomes available, you can always pass if you are not ready yet.