Doesn’t anyone else feel …… ?

Posted by sunnygardens @sunnygardens, Jun 25 6:27pm

Everyone seems so calm and reasonable on here. Am I the only one who gets fed up and irritable?
This evening two things are driving me nuts: one is the constant contrariness, increased from his normal contrariness. (My daughter once said he’s the most contrary person she’s ever met. That was three years ago. Before these unexplained symptoms began.) The other irritation (aaarrrghh!!!) is the nearly always saying “Oh, I know.” When clearly, until it was explained, he did NOT know. (This too is an increase from his normal level of knowing everything.)
It truly seems that all the incompatible characteristics are greatly exaggerated now.
As is my level of irritation, which certainly does not help.

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

Profile picture for Gratia @gratia

Today I just wish I knew a timeline. I feel I’m under voluntary house arrest with no release date in sight. My life is a trap.

Dementia…it’s just such a difficult experience and I wouldn’t wish the caregiving burden on anyone.

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@gratia
Yes, no timeline yet I'm conflicted on that. It is depressing with no rest, no vacations, no way will things get better, only worse, no life. I do try to enjoy the little things, the beautiful sunny day, my small garden , an occasional art project I enjoy. Good memories, I watch the birds in our small yard. I have to grasp for these small things to keep myself level. Wishing you some good moments.

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Profile picture for michelamio @michelamio

No, you are not alone. I’m tired of the duplicitous behavior and talk and it is always about the siblings not in the room. Such is the dynamics of my dysfunctional family my whole life , only now, this disease has amplified my mother’s foibles, mainly her critical hurtful comments, and looking down on other human beings. I’m considering memory care facilities because I’m wasting away as her sole caregiver.

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@michelamio I will pass on a suggestion my stepdad gave me: Ask yourself if this is what you want your life to be for the next twenty years. Alternatively, ask yourself “What do I want to do with the next twenty years of my life?”.
That was a bell ringing moment for me, looking at it that way.
Taking care of myself does not mean I can’t help others WITHIN MY OWN HEALTHY BOUNDARIES.

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Profile picture for dianaml @dianaml

No! You are definitely not alone. I am also fed up with all of the irritable and constant repetitive behaviors and lack of awareness of certain things. We fight a lot as a result of this. I try to pull back, I try to let go, I've tried to smooth things over but nothing works. It's just very difficult and I totally empathize with what you're going through. So yes we do feel the same things you do!

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@dianaml one thing I learned from growing up with a bipolar mother: you can’t reason with them.
It gets even worse as her dementia begins. Thank God I don’t live with her because she can be nasty.
With my housemate who is displaying undiagnosed cognitive and mood changes, a new thing I learned is “gray rock”. It’s a string boundary setting way of behaving. Google it.
This is a really tough lesson for me, giving my personality, but it dies really help to decrease chaos.

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Profile picture for lkbous @lkbous

@diane07710 Oh my gosh, you hit the nail on the head. I don’t think anyone who is not living this personally and up close has an inkling of the denial/coverup! It is such a hard road! The constant pretending, lying, faking, etc.,etc., I was never around someone with cognitive issues until it was my own husband! No words!

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@lkbous exactly. For me, my friend had manipulative and deceptive (even lying), noon-empathetic characteristics anyway but I could still enjoy his good qualities.
Now, I really can’t trust him because all of that has increased, along with other new “behaviors” (suspected symptoms).
How diss one have a relationship without trust??

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Profile picture for Gratia @gratia

The only thing that helps me is to do small - very small projects. Cleaning, organizing, or rearranging. I’m pecking away at a story I’ve been working on but caregiving gives me little energy for that.
Just try to carve out niches of joy even if tiny ones.
We will get through it. You are not alone. ❤️🤗

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@gratia for sure! Saving energy for priorities, little enjoyable tasks or rests. We all need to find a way to have horses or days of respite if at all possible though!
I find it takes about two days for me to feel rested and relaxed, if my housemate goes away.
On the third day I realize things that used to be joyful still are! Because I now have a little more energy to actually do these things.
Keep up the good fight!
🌻

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Thank you! I will fo that...Diane

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Profile picture for Gratia @gratia

The only thing that helps me is to do small - very small projects. Cleaning, organizing, or rearranging. I’m pecking away at a story I’ve been working on but caregiving gives me little energy for that.
Just try to carve out niches of joy even if tiny ones.
We will get through it. You are not alone. ❤️🤗

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@gratia I feel for everyone writing here and find the same thing.

We are moving soon. We sold our house of almost 46 years. The process of giving away or discarding things we do not need anymore is cathartic. My husband has hardly helped with this process but hasn’t interfered very much either. That has actually been helpful. He very often forgets the dates of the move and I have printed out a calendar for him to try to help him keep track of the process and understand it.

I’m hoping that when the move is over and we are settled we can get into a new and better routine. I would love to find a way to do a little more on my own.

Yes…this is very hard and not the way I’d like to be spending my senior years. I try to be the person who is a loving and supportive caregiver but I also feel stuck and sad.

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Profile picture for michelamio @michelamio

No, you are not alone. I’m tired of the duplicitous behavior and talk and it is always about the siblings not in the room. Such is the dynamics of my dysfunctional family my whole life , only now, this disease has amplified my mother’s foibles, mainly her critical hurtful comments, and looking down on other human beings. I’m considering memory care facilities because I’m wasting away as her sole caregiver.

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@michelamio: so sorry to hear of the treatment you are enduring from your Mother with dementia. I can relate due to my aged Mother’s superior, judgemental attitude and treatment of aides, nurses, family, caregivers, neighbors, etc. - it was hurtful to others and completely unnecessary!
You have a decision to make. My experience was similar, although I was not the conservator with final approval. I voted family had done enough (rarely pleasing her) and it was time for a nursing home. Do your research & decide on the best place with availability to family members to visit whenever. The costs look prohibitive but after her savings is exhausted hopefully MediCal (CA welfare) will take over. She may have to reassess her NEEDS vs. her WANTS due to the services provided, but she will be safe, cared for, and be under medical care 24/7.
You and your family have life to live - however you choose. We aren’t getting any younger and these retirement years are precious to each of us. You deserve to retire from caregiving.
Just my 2cents…. Bette

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Profile picture for sunnygardens @sunnygardens

@michelamio I will pass on a suggestion my stepdad gave me: Ask yourself if this is what you want your life to be for the next twenty years. Alternatively, ask yourself “What do I want to do with the next twenty years of my life?”.
That was a bell ringing moment for me, looking at it that way.
Taking care of myself does not mean I can’t help others WITHIN MY OWN HEALTHY BOUNDARIES.

Jump to this post

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Profile picture for dbamos1945 @dbamos1945

@michelamio: so sorry to hear of the treatment you are enduring from your Mother with dementia. I can relate due to my aged Mother’s superior, judgemental attitude and treatment of aides, nurses, family, caregivers, neighbors, etc. - it was hurtful to others and completely unnecessary!
You have a decision to make. My experience was similar, although I was not the conservator with final approval. I voted family had done enough (rarely pleasing her) and it was time for a nursing home. Do your research & decide on the best place with availability to family members to visit whenever. The costs look prohibitive but after her savings is exhausted hopefully MediCal (CA welfare) will take over. She may have to reassess her NEEDS vs. her WANTS due to the services provided, but she will be safe, cared for, and be under medical care 24/7.
You and your family have life to live - however you choose. We aren’t getting any younger and these retirement years are precious to each of us. You deserve to retire from caregiving.
Just my 2cents…. Bette

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@dbamos1945 thanks for your thoughtful response.🙏

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