1. < Caregivers: Dementia
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How do you manage the profound loneliness of caregiving?

Posted by Gratia @gratia, May 28 10:00am

How do you manage the profoundly lonely moments as a caregiver for your loved one with dementia? I’m a person who absolutely enjoys and needs a lot of “alone time”, however this situation somehow makes me feel much more lonely. And sad. Very sad. It’s probably the limited and circular conversations coupled with the loss of social life and work.
Thank you for listening.
❤️

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kjc48 | @kjc48 | 4 days ago

Your timely advice has me reflecting on all the alternative routes you describe some I can't do, but others I can. The Dolly Parton wig, I did purchase one, so thank you. And I watched her documentary last night and was amazed that she had the courage and moxie to wear them back when? Finding the small comfortable place you're right on. I'm just trying to forge through one of the biggest stressors right now, the remodel of our house that had to be done due to the mold, and the financial aspect of it all. Thanks for your reminder that this will pass.
Best, Karla

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labrown | @labrown | 3 days ago
In reply to @ocdogmom "Some happy faces in my backyard:" + (show)
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Some happy faces in my backyard:

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@ocdogmom Sunflowers are my happy flowers. They always make me smile when I see them. Thank you for sharing yours.

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wtr2026 | @wtr2026 | 3 days ago
In reply to @kjc48 "I haven't experienced the physical loneliness as much as I have the loneliness (and fear) that..." + (show)
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I haven't experienced the physical loneliness as much as I have the loneliness (and fear) that comes with making all the decisions that we once made together. There's just no one to turn to, and everyday fills like this "push pull" of what's next on the list to decide on. Maybe it's my own personal situation on top of the MCI diagnosis last year with my husband, of a move out of our house due to mold, in limbo for 3 months in a hotel, a rental home that also had mold and moveout with a financial loss, another rental (that has yes, turned out great and I"m still in), and living out of storage for 7 months now while we're remodeling with that whole set of issues. Then planning to sell and finding someplace else to go all in the middle of all these lequembe infusions, MRI's, Pet scans, support groups, and just the normal everyday issues that come from insurance company changes, technology issues, medical portals, 1800 numbers that have all gone to AI, where just trying to get a "person" to next to impossible. So, on the brighter side, I'm sorry I'm ranting this morning - Thanks for listening......Ah, another day of decisionmaking and caregiving.......But the sun just came out! Best, Karla

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@kjc48 wow, you should definitely rant. Transitions are hard on most people and you have had so many. I hope that your next set of issues go as smoothly as possible.

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kjc48 | @kjc48 | 3 days ago
In reply to @wtr2026 "@kjc48 wow, you should definitely rant. Transitions are hard on most people and you have had..." + (show)
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@kjc48 wow, you should definitely rant. Transitions are hard on most people and you have had so many. I hope that your next set of issues go as smoothly as possible.

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@wtr2026 Yes, unfortunately, we had a lot of not so good things happen last year, which has been quite stressful. But I'm alive, I'm breathing. my husband is still independent even though diagnosed with MCI, and we're just trying to cycle back to some normalcy. I appreciate your kind words hoping that my next set of "issues" go as smoothly as possible. I prefer to call them the next set of opportunities, as that gives me hope that things will run a bit smoother once I can get to end of remodel, out of a rental and storage boxes, and get my husband situated in our next home. New opportunities .... thanks for posting (and caring).
Best, Karla

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wtr2026 | @wtr2026 | 3 days ago
In reply to @kjc48 "@wtr2026 Yes, unfortunately, we had a lot of not so good things happen last year, which..." + (show)
Profile picture for kjc48 @kjc48

@wtr2026 Yes, unfortunately, we had a lot of not so good things happen last year, which has been quite stressful. But I'm alive, I'm breathing. my husband is still independent even though diagnosed with MCI, and we're just trying to cycle back to some normalcy. I appreciate your kind words hoping that my next set of "issues" go as smoothly as possible. I prefer to call them the next set of opportunities, as that gives me hope that things will run a bit smoother once I can get to end of remodel, out of a rental and storage boxes, and get my husband situated in our next home. New opportunities .... thanks for posting (and caring).
Best, Karla

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@kjc48 Karla - and may those opportunities bring joy along with them!! XO

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kjc48 | @kjc48 | 2 days ago

Thank you - only the best for you too! and every other caregiver out here. And yes, a silver lining in all of this - JOY!
Karla

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Gratia | @gratia | 2 days ago
In reply to @kjc48 "@gratia There you go again. with those "WOW" pics! Best, Karla" + (show)
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@gratia There you go again. with those "WOW" pics!
Best, Karla

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@kjc48 Hi Karla, Thank you! I’m happy you enjoy the photos 🤗

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kjc48 | @kjc48 | 2 days ago
In reply to @gratia "@kjc48 Hi Karla, Thank you! I’m happy you enjoy the photos 🤗" + (show)
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@kjc48 Hi Karla, Thank you! I’m happy you enjoy the photos 🤗

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@gratia Love this one! Looking into the brush surrounded by all that nature - beautiful. Just beautiful. Best, Karla

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schenelly | @schenelly | 2 days ago

I understand exactly what you mean. As my husband’s cognitive and physical conditions erode, it is harder and harder to spend time with others, either with him present (because other people are uncomfortable with some of the strange things he says), or by myself (because I don’t feel safe leaving him alone). And I don’t want to drive friends or family away by dwelling on my problems with caregiving. It is a sad and isolating experience . Wishing you strength

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Gratia | @gratia | 2 days ago
In reply to @schenelly "I understand exactly what you mean. As my husband’s cognitive and physical conditions erode, it is..." + (show)
Profile picture for schenelly @schenelly

I understand exactly what you mean. As my husband’s cognitive and physical conditions erode, it is harder and harder to spend time with others, either with him present (because other people are uncomfortable with some of the strange things he says), or by myself (because I don’t feel safe leaving him alone). And I don’t want to drive friends or family away by dwelling on my problems with caregiving. It is a sad and isolating experience . Wishing you strength

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@schenelly I’m so sorry to hear what you’re going through. I have similar experiences while my situation is with mother which is different.
I find the online support groups as well as some YouTubes on dementia care are very helpful. At least we know we are not alone on the dementia caregiver journey.
🤗❤️
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