His last night at home

Jazzma · April 29

This is the last night my DH will spend at home. I understand now that he can’t live here, I can’t take care of him, I can’t keep him from slipping away. I’ve tried to hold him so tightly that he can’t forget me or home, but it is not reality. He will drift away, take his own road from here. He will forget me, our history, our home. I can’t hold him and I can’t go along. Maybe I can still hold his hand and go for walks as someone he thinks is nice.

So what am I doing? Drinking wine. Today was the last ‘sundowning’ episode, the time that starts around 2 and goes until 6:00 when he gets manic, agitated, delusional, focused on having to do something that he can’t explain, irritated because I don’t understand. We drove 30 minutes to another town to buy groceries because the drive ate up some of the sundowning time. When we got home, while I was sorting groceries, he peed all over the garage stairs. He tried to clean up the kitchen, ‘washed’ the butter with soap and water, wiped melted butter all over the sink and faucet. I’m hoping that putting food in front of him now will hold him until this episode passes. He’s had 2 Seroquel and a Trazodone. One more Trazodone before bed.

I feel like I should be treasuring this last night, but I’m too jangly to do that. Maybe once we get to bed and things calm down.

I know many of you have been through this night. Thanks for being there.

M1 · April 29

Let us know how it goes tomorrow. I know this is a night you won't forget. I remember ours.

wose · April 29

So heartbreaking for you Jazzma. I’m so very sorry. It’s knowing that’s making this doubly hard. Hugs and prayers💜

Pdxnewbie · April 29

You are doing the right thing for both of you.

Pdxnewbie · April 29

Beachfan · April 29

Jazzma,

If it’s any consolation, my DH was home for 11 1/2 years, in MC for 17 months and dead now for 1 year and there are still times that I question my decision to place him. But then I come to my senses. You are doing the right thing in the moment; if it’s not right, you can always rescind. Stay strong and anticipate the time when you can enjoy his company, if only to hold his hand or walk with him. You can do this; it’s hard, but doable. We are all pulling for you!!!

AnderK · April 29

What a fraught day and night. It's the right thing. My best to you. I wish for you thaty the inner strength that you have called on until now keeps providing in the next few hours and days. Kathy

Kibbee · April 29

What an exhausting experience. And to think of doing it night after night, oh my. It does not sound sustainable for you, or your DH. Once the move happens and you’ve both had time to rest, relax and adjust to your new realities, I hope you will find the peace of knowing your decision was the right one for both of you.

trottingalong · April 29

my heart goes out to you. Good luck tomorrow.

JeriLynn66 · April 29

Thinking of you from here. You've struggled mightily with this decision, and I pray you find some level of peace. Thank you for sharing your journey. We'll all be standing beside you as you face the day. Big hugs.

harshedbuzz · April 29

@Jazzma

I hope you have a seamless transfer to the MCF today followed by an easy transition to your new routines. Cobbling onto what Beachfan said, my mom found it easier to do the emotional piece of caregiving dad once professionals were doing the hands-on caregiving.

HB

midge333 · April 29

I am so sorry you and your DH are going through this. You are doing the right thing. After the transition, I hope you can get some rest and settle into a new routine. Be kind to yourself.

Jazzma · April 29

My deepest thanks to all of you. It's interesting that even with the support of friends and family, you who I have never met in person can comfort me the most.

The transition this morning was smooth. A friend took us both there, and we helped him settle in with tulips in his room and pictures of family. The staff introduced him to his neighbors, who are very friendly. His room has morning sun and a view of the gardens. Someone will stay there with him tonight to reassure him when he wakes up. They tell me he is introducing himself and hanging out with a few of the other residents.

He was lucid this morning, as usual, and understood that he needs to stay there while I am away from home. That helped both of us. We said a very warm goodbye.

I'm very sad, but I finally know that this is the right and necessary decision. He is in a safe place with people who will take good care of him. It's only 10 minutes from home so I can see him any time, including if I want to come by at night just to watch him sleep. I'm doing better than I expected and believe that things will get better from here.

I'm very moved that those of you who have been through this are here to help those of us going through this. I hope to do the same.

Blessings to you all.

M1 · April 29

So glad to hear that it went well. That will make your grief a little easier to bear. Hang in there, it's still a big transition.

ghphotog · April 29

I felt the same way. I tried and still try to hold her as tight as I can. Trying to save her from falling all the way down the rabbit hole but to no avail. My DW sounds a lot like your DH and the night before placement was very hard.

The straw that finally broke the camel's back was when we went out to eat, as that seemed to be one thing we both enjoyed but on the way I knew and sensed she was sundowning and becoming frantic, scared and agitated. We got our table, I ordered a beer for me and a coke for her. I could tell things were not going to go well so I had the waitress make our order to go. While we waited she started getting very angry with me, screaming, yelling and hitting me right there in the restaurant over and over. How do you explain that to everyone that is now starring at her and glaring at me? It was stressful beyond words but I knew it wasn't her fault so my frustration with her was short lived but I knew that we would never enjoy these times again.

White Crane · April 29

I’m so glad the transition went smoothly. Please let us know how you’re doing in the next few days. Sending hugs.

jfkoc · April 30

thank you for the update…

Jgirl57 · April 30

Glad to hear the move went smoothly. Give yourself some grace and take time to settle into this transition. Hugs to you.

WIGO23 · April 30

Jazzma,

My eyes filled with tears as I read your description of your DH’s last day at home. I don’t know what my DH’s journey will be like but I hope I make the right decisions along the way. I once said “never” to placement in Memory Care but after being on this forum, I know that isn’t realistic. I wish peace for you and your DH as you adjust to this part of your journey.

Joe C. · April 30

I’m glad to hear you had a smooth transition. The most difficult part for me was when I returned to an empty home. Keep yourself busy in the coming days and try to get out with friends or family. I found that was the best way to keep the loneliness in check.

midge333 · April 30

I am glad the transition was smooth.

mrahope · April 30

I am so glad you were able to make this transition. I'm just completing my first week on my own. It feels very strange and too quiet, but somehow I've taken comfort in completing small tasks, visiting with DS and family, and getting out for walks or to the library.

My DH had been so angry and unpredictable for so long that I haven't yet begun to remember what he was like in the "before" times. I'm glad you can remember and actually use those memories to motivate you to visit and help advocate for him.

Be gentle with yourself now.

Jazzma · May 3

I'm back home tonight after spending 4 days with my brother and sister-in-law. They are loving, kind, and supportive. I could cry any time, sleep as much as I needed, talk endlessly. I finally feel that I have accepted reality and am able to continue with my life. My DH is happy at his new memory facility. When I call he doesn't know who I am but he's happy to talk.

I would not have survived this without my family, friends, and all of you here who understand. I've learned a lot. I'll stay on this site and hopefully my experience can help others as much as you've helped me.

It's not over. It may never be over. But I can live with what it is now.

Pdxnewbie · May 3

https://alzconnected.org/discussion/comment/207592#Comment_207592

Good to hear. Your experience sounds so different from my experience with my wife. I guess all MC facilities are not the same. It sounds like the worst is behind you.

Karen711 · May 5

Hi Everyone- I'm very moved by what I'v read tonight. I relate to so many of your stories, I've been glued to the page feeling like OMG, here is a whole group of people that really get it, deeply get it! I instantly felt like I was "home."

Though I'm new here, I have grappled with my wife's (we've been together 40 years) growing cognitive symptoms for at least the past 10 years. She has become outraged every time I've brought it up over the years. After several strife filled conversations, finally a few months ago she agreed (angrily) to go for testing. She is mid stage AD.

Even though this was no surprise to me, and even though it seemed she had had no self awareness of her condition, we were both crushed to hear the neurologist say it out loud. We held each other for the first time in a long while and we cried together. In the moment, I regretted pushing her to get tested because her ignorance was her bliss, and I felt I had really hurt her unnecessarily. But she got over it, superficially anyway, even though she's still gets mad about it.

But there seems to be a positive to it, in that going through the diagnostic process together has helped me feel like I am not keeping a secret from her, she knows what I think is going on, even though she still disagrees. I think, at least for now, it has brought us closer.

Anyway, I wanted to say hi to the group!

Heartfelt Best Wishes to Everyone here!

M1 · May 5

Hi Karen and welcome. Read about anosognosia, that's the name for her inability to perceive her deficits.

dhr · May 5

https://alzconnected.org/discussion/comment/208158#Comment_208158

What you describe is why I have not insisted on my husband being formally diagnosed. My mom had this disease so I know it. Plus both hubby and I were in the medical field. He knows his memory isn't great but has not put 2 and 2 together. Because he was actually a neurologist he would be devastated beyond belief. I might have to force the issue, but thankfully not yet.

Karen711 · May 5

I’ve been hesitating for years. Finally I caved after so much pressure from her family to get it done. And, I did think- what if she has some other underlying condition that could be addressed that might possibly help things. I will say that having an actual diagnosis has opened up a whole host of support services to ME which weren’t available before. Meetings with a social worker from the neurologist’s office have led to Support groups and access to respite services I was unaware of before. After ten+ years of dealing by myself I was getting worn toooo thin and so this testing thing has helped me far more than it’s done anything for her. The other good news is that she, most of the time, doesn’t think about it anymore unless something reminds her of it.

sandwichone123 · May 5

My dh was aware of his diagnosis at the time but no longer is. He'll tell me how great it is that we're both healthy. Once he overheard someone at memory care saying he had Alzheimer's and he was devastated.

Our neurologist was not nearly so supportive. He practically threw an Alzheimer's Association flyer at me and that was it. I had pursued diagnosis so my dh could go on disability, and diagnosis is all I got from that neurologist!

Karen711 · May 5

I think we were lucky in that there is a specialty practice whose focus is strictly cognitive issues. They are set up to offer support services, knowing they have very little to offer medically. “Lucky”

MN Chickadee · May 5

Jazzma, your description in some ways is so spot on. They do take their own road and you can't go with. They do forget their loved ones and their history. In some ways it's a relief because it can end really hard behaviors and questions when they leave us behind. But it is still so very painful; painful beyond words and only people who have been through this can understand fully. But in some ways the connection is still in there, at least it was for my situation. Mom knew I was someone she liked. I knew that deep down in there, somewhere, she knew me. She still somehow knew her husband, even though not in a classical sense. She still lit up when he visited even though she had no words or actual concept of who he was. At the end when she was transitioning to active dying, dad had recently had surgery and I had not been able to get him there to see her for a few weeks. When he finally came in the last 48 hours of her life, she had been waiting for him. She had not been showing any signs of awareness for a few days. She opened her eyes for the first time in a while when he spoke to her, and a small smile or recognition crossed her lips. It was the last time she opened her eyes and it wasn't long before she was gone. The love, the history is still there somehow, though not as we wish. You'll have to carry it now with your pain as a part of your love story. I am sorry you are going through this but glad you made a decision that is the best choice given the circumstances.

His last night at home

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