Wow, I underestimated the loneliness

Jeanne C. · October 19

My husband went to memory care this week. It's going fine. He's settling in fairly well. I feel like a jerk for even saying this. I'm lost and lonely. I've never lived alone before (family, college, roommates, then my husband). I'm trying to keep busy. Dishes are done. Laundry is caught up (for the first time in 2 years). I got my hair done. I sat in on a webinar about advocating for seniors. I even got my flu vaccine. And I've been over to see him every day. It's not even 9PM on a Friday and I'm thinking of going to bed. It's less lonely when I'm asleep.

SDianeL · October 19

I know. Sending hugs.

Quilting brings calm · October 19

Empty nest is a real thing. It takes time to adjust. It took a couple of months for me when our youngest went to college and my spouse worked out of state.

In the meantime… it’s ok to go to bed early and sleep late. It’s ok to read all day or binge watching tv to make the time go faster. Just try to do one productive thing a day, even if it’s just one phone call, cleaning out one drawer, eating out by yourself etc.

M1 · October 19

Jeanne for a while I kept a list called today's tasks. There might just be one thing, but somehow recording that one thing helped.

fmb · October 19

I so understand. ((hugs)) Even a year later, I still feel very lonely at times. I second all of the suggestions QBC listed. I would also add: Try to develop a routine for your ordinary days, especially as we approach winter and its natural isolation. I have both morning and evening routines that work fairly well at keeping me occupied enough to not notice the loneliness. For me the wee hours of the morning are the worst, those times I wake up at 3:00 or 4:00 a.m. and can't get back to sleep. I have a couple of long-distance friends whom I can email any time of the day or night. I feel a sense of connection with them without disturbing them in the middle of the night. You will have to discover what works for you.

LindaLouise · October 19

I so understand this! I had never lived alone either and after 46 years of marriage, this was a stunning and very sad change. As soon as the relief of not being on high alert 24/7 arrived, it made a path for the grief to come barreling into my life. The first time I took out one plate for dinner was the gut punch for me - realizing that this wasn't a one time thing but a forever thing. I realized I was not part of a couple any more. As an ALZ spouse, when we place our LOs, we suddenly become "widows", but without the outpouring of sympathy and support those who lose their spouses due to illness/death experience. Some call it anticipatory grief, but for me, the grieving when my DH was placed in MC has been the real deal. I know I will experience yet another level when he actually passes, but being alone and doing my daily life without my DH - even when he was so challenging and difficult and exhausting - creates an intense grief. Everything at home reminds me of him, the memories we shared and the fact that our beautiful story is over. I visit him as close to daily as possible, care for him dearly, but come home alone. It's been four months, and maybe is a little better, but still so hard.

Dio · October 19

It's been a year and a half and I'm still adjusting to "single" life as a non-widowed widow. The days go by fast for some reason. I hardly get much accomplished in a day. I've stopped doing things that I used to love doing. I still knit/crochet but that's about it. I watch tv and then go to bed. Then the next day starts over, like groundhog day. There's not much I feel like doing, even when friends try to get me to go out to lunch/dinner/movie/show or go on trips. I can barely make it to just a lunch with someone. I don't feel lonely and don't yearn for companionship. I actually like being alone. I wish I could enjoy this phase of my life but can't. I worry about my own health and our finances. There's still so much unknown with DH in MC and we've still got a long way to go with him being so young and relatively healthy. Good days and bad. I hope at the end of this journey I can look back and say "no regrets." I hope you can reconnect with good friends/family/neighbors and do things that you enjoy!

Biggles · October 19

I'm dreading the day I have to leave my DH; i've only just got him going 1/2 day to respite and I struggle not to burst into tears. Keeping exceptionally busy for me is best, anything mind numbing. I go to my daughters and clean her floors it stops me thinking. She said you don't have to do this Mum but I have found cleaning her floors is great, a bit pathetic perhaps but I feel like I am being useful, not quite washed up! Not the same staying at home and doing my floors, I don't have any interest in that.

Laurie1282 · October 20

My husband has been in memory care for just over 2 weeks. I knew it was going to be hard but had no idea about the depth of alone-ness. I try to accomplish at least one little thing each day, but there have been quite a few days where I haven't done a thing but sit on the couch and watch TV or play solitaire on my laptop. I also never thought visiting him in his new home would be so exhausting. I am ready for bed most nights by 9-9:30 which is not usual for me at all. I'm trying to give myself grace and not have any expectations. Not sure how long that attitude is healthy though.

Palmetto Peg · October 20

Like all of you, I am feeling so lonely and lost now that my DH is in memory care. I see him every day, but every time I come back to my apartment by myself I feel the pain of loss. I find I can read by myself, but watching TV alone is just so sad. It's only been a month, and I know it will get better, but right now the grief can be overwhelming. I second-guess my decision to place him, and then I remember how exhausted I was when he was here. He is actually doing pretty well over there, so I try to take comfort in that. I find it hard to accomplish very much, too, but I am giving myself some grace. This is a long, hard road, and we are not to the end yet. I hope to still make some happy memories with him. Hugs to all of us!!!

sandwichone123 · October 20

Laurie, I agree about the exhaustion of visiting in memory care. I am thankful to all of you for this thread, because I thought I was along in feeling these ways. I am still working and my son lives with me, but I still feel like I do not enjoy the things I used to enjoy—even dining out or going on a trip has dimmed, but I see that I am not alone.

mrahope · October 20

Thanks for this thread, @Jeanne C. I honestly thought maybe I was alone with some of these feelings, but can see that's not so. My DH has now been in MC about five months and I had no idea how lonely it would feel. It kinda shocked me, as prior to placement he was argumentative, aggressive and sometimes downright frightening. On top of that, we learned of some terrible things he was doing that he had hidden. That is, until we discovered contents of his laptop.

For the first few weeks, I was just luxuriating in feeling safe. Now, despite planned activities most of the week, I feel pretty lonely. Part of it is that I am new in this town (about 14 months now) and just beginning to develop a network, and part of it is living alone for the first time in over 45 years. As someone said, it's like being a widow without actually having a spouse die. I call this "death without the casseroles". No one (I think) realizes that despite all that has happened, we can't help grieving someone who was a part of our lives for so long. It's been a grab bag of emotions for quite a while.

I would recommend planning activities that you pay for (even a very small amount) and going to them whether you feel like it or not. Like other enemies of the good life, loneliness needs to be fought. YMMV

jfkoc · October 21

Memory care visiting seems to be tiring to some degree for almost everyone here.

White Crane · October 21

My DH went to MC on January 23rd and I still miss him so much and am so very lonely. I have only lived alone for a few brief months years ago in my late teens. I look at his empty recliner in the evenings and picture him there. Tears come easily and at unexpected times. I cry in grocery stores and sometimes at exercise class if they play a song that hits a nerve. I look forward to my visits with him to hug him and be hugged by him. Even then it's a poor substitute for having him here with me. I try to keep busy and do at least one productive thing a day. Friends help but in the evenings it hits me and the pain of the loneliness is deep and aching.

Carl46 · October 22

Those "Joy For All" robot dogs aren't just for PWDs. They help loneliness even with people who are mentally sound but shut in, according to a New Yorker article a couple of years ago. When and if I am cooking for one, I may get one. Not a problem now, we are at the "shadowing" stage and loneliness isn't one of my problems.

tboard · October 22

I have never lived alone either. I have to say that my DH isn't exactly great company these days. Even though we live together I am very much alone and feel isolated. Most days I believe I would be happier alone. There wouldn't be anyone yelling or swearing and I could come and go as I please. I need more sleep and I wouldn't mind having more time for various projects.

Lkrielow99 · October 22

thank you JeannieC for the post. I’m ok living alone, I have two dogs that get me out of bed. I am lonely beyond belief. Our anniversary was yesterday. The VA Home gave him flowers to give me and I bought a cake. No more cards. He didn’t understand it was our anniversary. I can’t get things done. I just can’t. Most days I would like to crawl under a rock. I need to move, for a lot of reasons. Packing and tossing things out is difficult. In my own delusions, I think he may come home…. But he isn’t. My attorney has given me a legal action plan and it’s going to be a process. My friends are there for me, but not in my small town. My family is nonexistent, so my close friends are important in my healing process. And then all the legal issues. I’ve ignored so much of my life over the past few years, my health and house maintenance are surmountable. When my mind settles down, I grieve. Where can I hide? All of your posts have helped me realize this is normal. I still do not know how to process the loneliness and move forward. Thank you all for being here and sharing your journey. Much love to you all.

APenny4You · October 22

This is my first time posting and it is all so new to me. I attended my first support group this past week and even though my DH is not in long term yet, it seems I die everyday. He was such a strong man, competent in everything and now we can't even hold a conversation. I get so angry at this disease! I feel like I don't pay enough attention to him because I find the best way to cope is to do crafts that keep my mind busy. If I stay around him he either sleeps, plays games on his phone or talks about things we just talked about. I just feel horrible that I can't seem to sit long with him, but I know he is occupied too watching tv. Guess I am just venting.

tboard · October 22

https://alzconnected.org/discussion/comment/226341#Comment_226341

I can relate to everything you have written. I often feel pressure to "entertain" my DH who can not carry on a conversation and who more or less lives in his own world. I try to work and I also do some crafts. I can only do things that I can easily put down every time I am interrupted.

Jeanne C. · October 22

https://alzconnected.org/discussion/comment/226320#Comment_226320

they’re great. I got my husband one a year ago and he would sit and sing to it. Even now he pets it. I take it with me when I visit sometimes. I’d leave it there but I’m sure the night staff wouldn’t appreciate the random barking if it is left on.

Jeanne C. · October 22

What a club we are - it truly helps to talk to you. I appreciate all your advice. And it helps knowing that we’re not alone in this.

I am trying to keep busy. I’m doing some volunteering with the AFTD. I just registered for an online class to keep me current in my profession. And I’m updating my resume so I can get back out there.

Tomorrow is going to be a challenge. His sisters, who do not approve of my decision to place him, are coming to see him. But I’ll get through it. We always get through it, don’t we?

Thank you friends.

M1 · October 22

Jeanne, you don't necessarily have to be there when his sisters visit. Maybe you want to be, but it would be okay to miss it. They'd have one less target....just a thought.

Jeanne C. · October 22

https://alzconnected.org/discussion/comment/226372#Comment_226372

Food for thought. 🤔

Dio · October 22

M1, maybe this is my first disagreement with you, LOL. I think I would be there just to hear what his sisters may be saying to him. Lately, I'm a bit suspicious of people who say stupid things like "you don't belong in memory care."

Jeanne C. · October 24

I did meet them there. And the visit was fine. Apparently the ulterior motive was just that they want their grandfather’s pocket watch, which my husband’s father gave to him. Whatever.

LindaLouise · October 24

So glad it went well with the sisters. When my DH's three sisters came to visit in July - all from out of Washington State and one from Eastern Canada - two of them melted down and cried hysterically, then turned on the one who kept her composure and accused her of being uncaring! The MC said to please, not have them come again - it took days to calm him down after that disaster! They were all in town for one of my niece's college graduations, so won't all be here together again! Very glad your experience was much calmer. What a journey we are all on - so much to navigate from our own emotions, to those of our families, and then all the other things we are responsible for - all while dealing with the terrible loneliness and not having our "person" to talk it all over with. So grateful for all of you! Very grateful!

fmb · October 24

https://alzconnected.org/discussion/comment/226476#Comment_226476

DH's estranged daughter came to visit him last month. I had invited her, giving her the opportunity to see him before he dies and while he was still somewhat lucid. While not expecting a reconciliation scene from a Hallmark movie, she behaved herself better than I expected. She wasn't there five minutes before she started hinting about her inheritance. Telling her that we're paying over $86,000/year for his care shut that down in a hurry. I don't expect her to visit again.

docfess · October 24

Anyone believing what a LO with Alzheimer’s says needs more experience. It costs a huge sum for sure, but that’s because it’s worth it!

Sallymander · October 24

I have not experienced THIS kind of loneliness, but recall when we moved and I was at home with small kids, and separated from my networks and my husband worked and traveled a lot. I made myself join the PTA, get active in our church, volunteer. Recently I went to an exercise class for seniors, and joined a chorus. Things got better.

All of these stemmed from looking for opportunities in my community to be with people and be useful. Ones that I could just "show up" for and not have to arrange for myself.

MY DH does not need MC yet, thankfully. But I'm glad I can call on these experiences when he does.

APenny4You · October 24

I am so grateful I finally stepped into this new world of friends. Days I think we are having a good day turns into sorrow and anger for what is truly gone now. I try to explain my feelings or stern talk to DH, because he gets angry with me not understanding and I absolutely want to find a hole to crawl in and when I emerge this will all be a bad dream. God I miss my loving husband!!!!😪

fmb · October 25

https://alzconnected.org/discussion/comment/226557#Comment_226557

You are very welcome here, although I am sorry for the reason you need to be here. The sorrow and anger for your losses are very normal feelings of grief. We've all experienced this. Unfortunately, trying to explain our feelings to a PWD is a waste of energy. Empathy disappears fairly early on in the disease progression. Trying to use logic or reason is also futile. As we say around here, you can't reason with someone whose reasoner is broken.

Wow, I underestimated the loneliness

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