1. < Caregivers: Dementia
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The Loneliness

Posted by Gratia @gratia, 5 days ago

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 | 1 day ago
In reply to @n82821 "@kjc48 Yes, there is loneliness. I am thankful for the present, when we are together, even..." + (show)
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@kjc48 Yes, there is loneliness. I am thankful for the present, when we are together, even though, she is somewhat distant. I think that she too, is lonely and scared, and it breaks my heart, when I take a few steps in her shoes. We play Super Scrabble, she is still a very good wordsmith. This has been a journey of almost ten years, as it was apparent to me that she was having cognitive issues, quite a while ago. It's one day at a time.

Tom

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@n82821 Oh Tom, I hear you and I am thankful for the present too. Somewhat distant is still better when you can sit down together and play Super Scrabble. I'll have to try that with my husband. Thank you for your share. Best, Karla

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kjc48 | @kjc48 | 1 day ago
In reply to @judimahoney "@kjc48 At my wit's end yesterday I told my husband when he behaves like he was..." + (show)
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@kjc48
At my wit's end yesterday I told my husband when he behaves like he was that I just want to hit him, but quickly added, but I won't hit you.
When that didn't work my frustration reared up and I started to cry, then he settled for a few minutes and actually apologized which was a shocker.
I will try most anything to try and change his behavior when he gets in a loop, and usually my efforts are fruitless, despite all the educational dementia caregiver classes I take that give excellent tips.
It is a lonely road we are on.
Hugs all around, group! 🫂

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@judimahoney Cry, now that works for me! and to get an apology to boot. That works for me too. Keep doing what you're doing and sharing. The pipeline of trials and tribulations are well noted. I have a complete folder of everything I'm printing out from this site, to help guide me through the day. Best, Karla

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kjc48 | @kjc48 | 1 day ago
In reply to @judimahoney "@kjc48 At my wit's end yesterday I told my husband when he behaves like he was..." + (show)
Profile picture for judimahoney @judimahoney

@kjc48
At my wit's end yesterday I told my husband when he behaves like he was that I just want to hit him, but quickly added, but I won't hit you.
When that didn't work my frustration reared up and I started to cry, then he settled for a few minutes and actually apologized which was a shocker.
I will try most anything to try and change his behavior when he gets in a loop, and usually my efforts are fruitless, despite all the educational dementia caregiver classes I take that give excellent tips.
It is a lonely road we are on.
Hugs all around, group! 🫂

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@judimahoney PS sometimes all that educational dementia caregiver training falls short to what you feel and know in your gut. And when someone hurts you and is treating you bad, we know what to say or do for "impact", especially if it startles them into different behavior. Best, Karla

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kjc48 | @kjc48 | 1 day ago
In reply to @n82821 "@kjc48 Yes, there is loneliness. I am thankful for the present, when we are together, even..." + (show)
Profile picture for n82821 @n82821

@kjc48 Yes, there is loneliness. I am thankful for the present, when we are together, even though, she is somewhat distant. I think that she too, is lonely and scared, and it breaks my heart, when I take a few steps in her shoes. We play Super Scrabble, she is still a very good wordsmith. This has been a journey of almost ten years, as it was apparent to me that she was having cognitive issues, quite a while ago. It's one day at a time.

Tom

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@n82821 PS, ten years gives me hope. Hope that comes from you being able to still play Super Scrabble together and that she is still a "very good wordsmith." Hope to face each day, and hope that our spouses aren't lonely and scared with us by their sides. Always. Best, Karla

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judimahoney | @judimahoney | 1 day ago
In reply to @kjc48 "@judimahoney PS sometimes all that educational dementia caregiver training falls short to what you feel and..." + (show)
Profile picture for kjc48 @kjc48

@judimahoney PS sometimes all that educational dementia caregiver training falls short to what you feel and know in your gut. And when someone hurts you and is treating you bad, we know what to say or do for "impact", especially if it startles them into different behavior. Best, Karla

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@kjc48
You got that right!

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georgescraftjr | @georgescraftjr | 1 day ago
In reply to @kjc48 "@georgescraftjr Excuse my ignorance but when you say, "threaten to strip" was he referring to taking..." + (show)
Profile picture for kjc48 @kjc48

@georgescraftjr Excuse my ignorance but when you say, "threaten to strip" was he referring to taking yours and his clothes off. I think that's what strip means....I just can't believe the son wouldn't talk with you. It makes me sad that he would do that knowing what you are up against and the condition his father is in. I know you mentioned you gave George a little gel pill the other day. I think I read that in an earlier thread. Perhaps, that's what the doctor has ordered for calmer days, and therefore, less crazy conversations with his son (and calmer for you on the homefront). It's hard to know what to say or do here, because as you say, you were home in another room and he was having hallucinations. Sending good vibes and a better week coming up. Karla

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@kjc48

George was referring to my taking off my clothes.

P.S. I never make a grand announcement before I disrobe: I just do it. ...and if I were to say something, I wouldn't use the word "strip." I might just say something like "I'm going to get out of these dirty clothes"--after coming in from doing yard work.

In any event, it's sad that George got frightened because he thought I was going to take off my clothes. Gone are the days when that was something that put a smile on his face! LOL

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2 replies
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georgescraftjr | @georgescraftjr | 1 day ago
In reply to @kjc48 "@georgescraftjr Excuse my ignorance but when you say, "threaten to strip" was he referring to taking..." + (show)
Profile picture for kjc48 @kjc48

@georgescraftjr Excuse my ignorance but when you say, "threaten to strip" was he referring to taking yours and his clothes off. I think that's what strip means....I just can't believe the son wouldn't talk with you. It makes me sad that he would do that knowing what you are up against and the condition his father is in. I know you mentioned you gave George a little gel pill the other day. I think I read that in an earlier thread. Perhaps, that's what the doctor has ordered for calmer days, and therefore, less crazy conversations with his son (and calmer for you on the homefront). It's hard to know what to say or do here, because as you say, you were home in another room and he was having hallucinations. Sending good vibes and a better week coming up. Karla

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@kjc48

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kjc48 | @kjc48 | 1 day ago
In reply to @georgescraftjr "@kjc48 George was referring to my taking off my clothes. P.S. I never make a grand..." + (show)
Profile picture for georgescraftjr @georgescraftjr

@kjc48

George was referring to my taking off my clothes.

P.S. I never make a grand announcement before I disrobe: I just do it. ...and if I were to say something, I wouldn't use the word "strip." I might just say something like "I'm going to get out of these dirty clothes"--after coming in from doing yard work.

In any event, it's sad that George got frightened because he thought I was going to take off my clothes. Gone are the days when that was something that put a smile on his face! LOL

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@georgescraftjr Yes, gone are the days when taking off your clothes, would have motivated the "hell" out of them! Gosh, fast forward to getting old. It's just not all it's cracked up to be. Thank you for explaining stripping, Again, I'm even more confused over what the son did. You were in your home, whether you strip down or not, who cares? I know it's not funny, but your note made me laugh about "gone are the days." Oh well, another day, another adventure. Best, Karla

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kjc48 | @kjc48 | 1 day ago
In reply to @georgescraftjr "@kjc48 George was referring to my taking off my clothes. P.S. I never make a grand..." + (show)
Profile picture for georgescraftjr @georgescraftjr

@kjc48

George was referring to my taking off my clothes.

P.S. I never make a grand announcement before I disrobe: I just do it. ...and if I were to say something, I wouldn't use the word "strip." I might just say something like "I'm going to get out of these dirty clothes"--after coming in from doing yard work.

In any event, it's sad that George got frightened because he thought I was going to take off my clothes. Gone are the days when that was something that put a smile on his face! LOL

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@georgescraftjr make my day, for some reason, your note came up twice in my email. and TWO TIMES, I had a hearty chuckle over this. You standing there, no clothes on, and George having a meltdown. I don't mean to sound disrespectful because as a caregiver, none of this is fun, but oh my goodness, we have to find some silver lining in all of this. For sure. I'm still laughing. Please put your clothes back on!
Best, Karla

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cyds | @cyds | 1 day ago
In reply to @kjc48 "@georgescraftjr Yes, George's Wife - been missing you! Hope you are good. Thank you for the..." + (show)
Profile picture for kjc48 @kjc48

@georgescraftjr Yes, George's Wife - been missing you! Hope you are good. Thank you for the kind words. But without hair, oh my..........life doesn't always deal us the things we want. That's for sure. But I guess in comparison with the Althzeimers Dementia, hair loss pales.....Best, Karla

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@kjc48 - I'm not sure that putting it in perspective by comparing hair loss to AD would be helpful for me. I lost about half my hair during menopause, and it rocked my confidence - I had fabulous chestnut colored hair. I'm not necessarily a vain person, but a woman's hair is like her crowning glory. I've learned to love my much thinner, shiny silver hair - I'm not sure I could take losing more. I know that sounds shallow, but we give up so much during this journey, I'm not gonna give up any more strands without a fight. 🙂

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