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.
❤️

Interested in more discussions like this? Go to the Caregivers: Dementia Support Group.

Profile picture for cyds @cyds

@rnlorena I love how you lovingly handle your dad's delusions. I had shared on another thread last year how my husband (who now is in the middle stages of AD), handled when his dad asked something very crazy. DH went to visit his dad at their home, and his dad asked "Son - is my horse out there?" Hubby didn't miss a beat. He just asked "What color is it?". His dad scratched his head and thought about it and moved on to another subject.

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@cyds
I love how your husband handled this. I am learning caregiving for a loved one with dementia requires a wide range of skills.

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Profile picture for cyds @cyds

@rnlorena I love how you lovingly handle your dad's delusions. I had shared on another thread last year how my husband (who now is in the middle stages of AD), handled when his dad asked something very crazy. DH went to visit his dad at their home, and his dad asked "Son - is my horse out there?" Hubby didn't miss a beat. He just asked "What color is it?". His dad scratched his head and thought about it and moved on to another subject.

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@cyds I think saying things like that works a whole lot better then telling them no for sure. If we say things that will turn it into an argument we won't get anywhere. As a nurse I met some of my patients who had dementia and I had some discussions with the family about those kind of things. Before the dementia my dad was a calm person. I never saw him get in any kind of a heated discussion. Dementia is not an easy thing to have to deal with for sure. I just did what I thought was best and it worked for me. @rnlorena

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Profile picture for mm180 @mm180

It’s a good question- “how do I manage the lonely moments as a caregiver…” The question has made me stop and reflect- do I manage them? Or just experience them? I definitely experience them. It’s so hard to shift from having a life partner and husband that I could talk to and who could keep up with me, share witty stories, laugh at different situations, etc. and having all of that gone and replaced with someone who has circular discussions, can’t follow more than one simple step at a time, can’t discuss options or future opportunities with for fear of sending them into a spiral.
As I think about it, this group and a virtual caregiver group I participate in monthly definitely help by creating a sense of connection. My daughter is my other go-to adult and good friend. She helps me so much. I know she has her own life to live and I try to respect that and her time. I also do my best to stay connected to my sisters and my friends through texting and occasional visits but this definitely takes more effort and can get pushed off in the demands of daily caregiving. I also try to have something more interesting to talk about than my usual day to day when I reach out to them. I don’t think anyone really wants to hear about a morning trying to convince my husband that Mister Rogers was not a Navy seal or whatever other crazy things we spent the morning trying to resolve so he would take his medication and get dressed.
I miss being able to do things as a couple with other couples and have a dinner spent laughing and in engaging conversation. Mostly, he eats in silence and it requires his full concentration to feed himself, This is very different from our dinners “before”, and difficult for others to watch as well.
I don't mind the alone time now that he is sleeping more, and in some ways that is easier than the “loneliness” of being with him and having him not really “being there”. I find myself praying more, and that definitely helps me and reminds me that I am never alone because God is with me always.

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@mm180
Good morning, the saddest and hardest part of caregiving for me and for many of us I’m sure is missing our loved one and marriage and/or relationships celebrated, for us 52 years…we’ve never been promised a fair life but we have the promises of God to cling to each day, the source of my strength…God bless you and your family

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Profile picture for kjc48 @kjc48

@wmc I read your response to @cyds about "Alopecia" - something I know all too well with so little hair on my crown (actually now all over) - and realize ..... courage to face my "thinning hair," coupled with the clarity to know that if I keep losing it at this rate, then it's time for go-to "alternative hair." As @georgescraftjr and I talk about, we need to do whatever we have to do to boost our "inner you" while immersed in caregiving.
Best, Karla

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@kjc48 I also had thinning hair especially in front and on top. Went to a savvy endocrinologist....did lab work.....turns out l have Ovarian Hyperthecosis...a benign condition that responds to a change of the diuretic l had been on....from Maxide to Spironalactone.
My gynecologist is not inclined to do any surgery and l am fine at 81 to avoid surgery.
Meanwhile my hair stopped thinning and when it started again....my medication was increased.
Just a thought....

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Profile picture for tdrell @tdrell

@kjc48 I also had thinning hair especially in front and on top. Went to a savvy endocrinologist....did lab work.....turns out l have Ovarian Hyperthecosis...a benign condition that responds to a change of the diuretic l had been on....from Maxide to Spironalactone.
My gynecologist is not inclined to do any surgery and l am fine at 81 to avoid surgery.
Meanwhile my hair stopped thinning and when it started again....my medication was increased.
Just a thought....

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@tdrell Gosh, it's a great thought. Thank you for this little gem.
Best, Karla

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Profile picture for ocdogmom @ocdogmom

Some happy faces in my backyard:

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@ocdogmom Thank you for sharing that beautiful picture! I saw sunflowers yesterday.

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Profile picture for ocdogmom @ocdogmom

Some happy faces in my backyard:

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@ocdogmom I love those happy faces. thanks for sharing. Just beautiful.
Best, Karla

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Profile picture for Gratia @gratia

@ocdogmom Thank you for sharing that beautiful picture! I saw sunflowers yesterday.

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@gratia There you go again. with those "WOW" pics!
Best, Karla

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Profile picture for kjc48 @kjc48

@cyds I like you have been trying to love my thinning hair, but I've reached a point, that there are so few strands to love. I'm silver too, and I love it, but it's been very frightening this year, with my husband's diagnosis, having to move out of our house due to mold, hotels, a financial rental loss, then another rental and a full remodel, that is so stressful, it's not worth doing. I'm stuck, in the middle, unfortunately, any degree of stress and anxiety goes to my weakest point: my hair. You are right, a woman's hair is like her crowning glory, and that's what makes this hard. We're exhausted by the end of the day; from everything we do as a care giver. Then, there's our own health issues to deal with, and the physical and emotional toll of extreme hair loss just adds more weight and worry on top of it all. I'm in the fight but the female pattern baldness has a coveted seat right next to my husband's caregiving needs. And I can't get her to move over.......Best, Karla

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@kjc48 Try to find an alternative route to all your problems. Some examples: can you use hair growth serum, get a cool Dolly Parton wig or kerchief , sell the house as is, find a small, comfortable place for you both that has ultimate memory care, find a senior advisor, find services already there, etc, etc.

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