Lonely but longing to be alone…
Hello- New to posting, though I have looked in on others for several years. My DH (age 70) has Alzheimer’s and Vascular Dementia, heading into moderate stage although not yet problems with ADLs. We have known this was coming (through testing) for around 10 years. Slow progression, so I feel fortunate for that. SO many of you are in such worse predicaments. For me, our marriage was not the best prior to diagnoses, but now I’m in it for the long haul. I feel that I am young (66) and being a retired social worker, I access local supports and resources and have good friends. Just the day to day is so lonely, as he has less and less interest in anything he/we once did, even in conversation, and he’s so dependent, that it feels more like parenting. I dream about the retirement I imagined; travel and independence, which can’t happen now. I envy my single friends, as I would love to be unencumbured. Intellectually, I know it’s not his fault, and I have dropped the resentment I felt in the beginning. I just don’t know where to dive in on existing posts, as I’m not really seeking advice, just folks who are experiencing this feeling. It’s lonely to be in a house with someone who is slipping away…. The ambiguous grief of losing him while still being so needed is painful.
Comments
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I am so with you. All of what you described is everything I've gone through and going through…and then some! Hang in there. It supposedly gets better.
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Hi Annie,
I know exactly how you feel. Calling friends and getting out helps, but it is still a lonely and exhausting. If you haven't already, consider getting counseling as it will help. Also, do not hesitate if you need to take antidepressants. They help also.
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@AnnieTB. You described exactly so many of my thoughts and feelings. Your comment about not being alone but being lonely…that is right on target. What has helped me has been to prioritize time each week to meet one of my friends for a walk, coffee or a quick lunch. That time spent with friends gives me a break and provides a brief, but welcome, distraction from the realities of caregiving. Yes, hiring a respite caregiver is an expense, but for me it has been well worth it so that I can have some “normal “ time and come back refreshed.
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You have described my life and my feelings perfectly. I'm so sorry you, too, are experiencing all this.
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Ditto💜Same age..Same story…I’m very sorry you’re in the same boat. Hugs coming your way.
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I often felt that way, especially before DH's move to MC last week. For me, the loneliness was broken by his episodes of rage, so it was more fear than anything else. Now that he is physically absent, I know I'm lonely but somehow can tolerate it a bit better because I don't have to "watch my back" all the time.
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Ambiguous loss is a bitch. I just don't want my DW to suffer all the indignities of dementia…
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I loved to travel and those days are over. What I find works is to find intellectual and enjoyable adventures close to home. I am chair of a local political ward committee, volunteer on campaigns and find joy in gardening, birdwatching and simply walking. I schedule regular outings with friends. I also enjoy cooking and entertain our friends. Muppets husband has a fatal brain disease and all our friends know it, but life goes on,
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Ironically, I describe myself as “alone, but not lonely” after 14 years of diagnosed Alz. with DH and his passing one year ago. I had dinner last night with my “little brother” (age 72) and today I am meeting my childhood beach friend for lunch. I miss DH with all my heart everyday, but I can attest that there is life after Alz. Yes, the burden is lifted; I am truly alone but not lonely, and I try hard to make up for all the time I missed. DH is okay, I am okay; you will all be okay. Stay strong. ❤️
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I totally understand. My DH and I also have had a difficult marriage. He was never able to offer me much emotional support since he was ill for a long time before significant cognitive impairment showed up. Even when big things in my life that were supposed to be about me happened those events ended up being about him either through a health crisis or his interference. It's exhausting to think about. So maybe I've been lonely but not alone for a much longer time than I realize.
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I am terribly lonely, even as my DW pushes me to sit with her and stare at the tv together. Every minute, of every day when I'm not a work. She wants to hold my hand, but I don't feel that the same way I used to, and we love each other so dang much. But, it's different now. It's a deep love, but not a romantic one for me anymore. And, because of this disease, I have so little love and support coming my way from the one who use to give it to me so freely.
Boy, rereading what I just wrote made me realize what a terrible day I'm having. Yowza.
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It is lonely. A different kind of lonely than that which is felt after a death.
Before our loved one dies we are busy taking care of and being responsible for everything. After? Well , besides the permanent loss of a loved one, most of us have lost a job. A demanding, exhausting job and while there is frequently a sense of relief, we are left truly alone.
All of that said, I quess I am not a proponant of "ambiguos grief". Grief is grief and it has a life of its own…it will not be controlled.
_Judith
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I’m 67, husband 80. You said everything I feel.
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I had a surprise last week. My cousin was encouraging me to utilize the respite care that hospice offers and pointed out that I need time to myself. I was shocked when I said out loud, "I don't know who I am without him." I didn't realize I felt that way. This is lonely but I'm never alone. I'm scared of "alone." I guess I need to figure that out.
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@AnnieTB Hugs to you. As you can see, you voiced something that many feel. Honestly, I am too dang exhausted most days to feel lonely. I've always been more of an introvert which I learned is someone who recharges with alone-time, rather than extroverts who re-charge by connecting with others (often the more the merrier). So I am naturally very happy when by myself doing the things I love.
Dementia caregiving is a totally different twilight zone as we know. Like the title of this thread, I do think part of me is longing to be alone, but not exactly. Not really, not yet. I miss him already yes, but once he is truly gone — I know I will miss him so.
Thank you for posting this. Beachfan's response helped me a lot, as it is clear there is life after dementia if we can only survive our spouse's disease. And it doesn't mean we will miss or love them less. We just keep going, and growing.
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You are singing my song. We share a similar lifescript. I chose to stay in the relationship, despite the circumstances. And here I am, 75 years old, married 55+ years. I’m lonely, but work to keep my focus on the blessings of my children and grandchildren. I will show caring attitude and attention, but I know I will not be able to do the hard stuff. I’ll have to bring in support care when that becomes necessary. The kind of love that requires is just not in me any longer. Sad, isn’t it.
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There's nothing ambiguous about the grief itself. It's ambiguous because it's not recognized (especially by others) and acknowledged. No rituals, no official mourning, this is what adds to the difficulty, IMHO.
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Like you, I’m an introvert. Your second paragraph said exactly how I feel. I feel less alone with my thoughts when connecting with others comments.
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As so many have said, this is something I think we all go through. With my DH progressing, I long for the days of my companion, my best friend, my confidante, the person I wanted to talk to about everything. It truly is a very lonely feeling. At this point, the few minutes I get alone each day (not very many…) are a little bit of a break. But most of that alone time is spent reading this forum - and it's a huge help!
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I am in the same position. I have found that keeping a daily gratitude journal has helped me to appreciate and remember good moments are happening everyday. It may be a walk, listening up a bird , talking to a friend / small things in life. I also write down 3 things my DH did well today - Eating a meal he liked, getting dressed without arguing , laughing at something on TV. It helps me realize there are good moments.
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I am so lonely as well. I miss my life. I feel I no longer have one. My life is his. DH is by my side always as he will not stay with anyone else and he is fearful when I’m not there. We didn’t have the strongest marriage. However I realized that a lot of our stressors were due to the fact that he was experiencing a lot of symptoms way before I suspected something was wrong. And of course he’d never acknowledge he had a problem just like today. I try to keep in touch with friends and siblings even if just by text and occasional lunch along with my shadow. I try to find things for us to do outside the house each day to try to maintain some sense of normalcy for as long as I can. I recently started some remote counseling and an antidepressant. I live by “one day at a time” and when the going gets rough I try to count my blessing. I will also be eternally grateful for all the caring people on this forum.
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I feel you. DH never was that social but I was. Now seems like my life is completely around him. I am never alone or have free time.
He would prefer to sit and listen to music or feed the birds and squirrels.
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WOW. I only just now got back to looking at your responses. Thank you all SO MUCH for bearing your tough feelings, I truly appreciate knowing that I am not alone. Today I hosted a gathering at my house with compassionate friends and neighbors for a a ‘Dementia Friends’ presentation put on by my local Aging and Disabilities Resource Center (while my DH was at his day program.) Amazing to witness the ‘village’ I have of genuine support, and also to learn of how many of my friends have experienced dementia in family members. I’m continuing to learn and grow, and focus on care for my husband, as well as breaks and supported travel for myself. Hugs to all of you on your difficult journeys!
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I just found your post today when I searched for feeling lonely. You put into words what I am feeling today. He is here, but doesn't want to do anything. There is always an excuse. "It might rain, it's too hot, can we do it tomorrow?" If I was alone, I would do more, as being gone for long makes him stressed out too. Even me being on the phone is sometimes too much for him as he needs me to always be accessible. I know I need to get help, but he is not at the point where he would let me hire someone to stay with him, and certainly he wouldn't go anywhere like a senior center or day care. Thanks for letting me know I'm not alone. I just need to learn to control my sad emotions - especially around him. I don't know how to do that yet.
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wow, I couldn’t say it any better. I feel the same way
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I got my husband to accept a caregiver by telling him it was to help me so I could go to my doctor appointments. After she came the second time he asked was “his lady” coming today. She mainly listened to his stories that he told her again every day.
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Problem is, he thinks he's ok to be by himself.
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Hi Everyone-
These are all Very moving posts, blown away, this is how this site gives me/us support. Thank you all for sharing these deeper stories.
With Gratitude
Karen
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You sound so much like me. I new to posting as well, as I’m just figuring out how this platform works. It feels weird to be lonely while constantly with him. I miss conversations with depth (which requires memory) and I miss his witt, the shared humor of thing (which also requires memory). I feel like a burden to family and friends by continuing to talk about my woes. I feel so alone! Trying to remain grateful but sometimes it’s hard.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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