I guess I'll go first with this one.
The thing that stands out the most for me about MIL with alzheimers.......

Everything is ALL ABOUT HER. I could cut my arm off and be bleeding on the floor right beside her and she would worry about who was going to bring her a cookie.
I am treated as" a nothing" in her world.
Then I feel guilty for thinking she's an old battleaxe.
Well that's my confession.
How about yours?

The loss of freedom. Having to be close by at all times and never getting a break.
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Reply to mjapril123

No end insight
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Reply to windoverwater
Corgimama May 2020
Yes, with the virus and my elderly friend being 86 and having heart and lung issues we have to stay quarantined. I also have to watch her like a hawk because she wants to get out shop and wander around the grocery store. She actually did lie to me a couple of times and went out shopping and came home with stuff. She says she's not worried about getting it but for me, I can't handle that. I lost my husband to cancer in December and I don't think I could handle losing her. I am here at home with her 24/7 with, as you say, no end in sight.
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What is the one thing that bothers you the most about caregiving?

My answer: It's like applying for a job where one has zero professional training, yet you are hired with no pay and no set hours.
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Reply to freqflyer
MoonWishing1980 Jun 2022
This!! For years now I've been searching for the words to explain it to people that just don't know you know? This is the most relatable, well written, truthful, raw comment I think I've ever encountered. I'm crying (geez. When am I not?) But it's somewhere in between crying out of pure exhaustion and grief and a strange sense of almost comfort and relief that somebody else not only sympathizes but empathizes almost verbatim how I feel. Thank you freqflyer. Thank you so very much from 8 years in the future!
Not being able to "fix" what is wrong.
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Reply to jeannegibbs
Health4him May 2019
Oh, you are so right. I feel like I’m spinning my wheels and just going through all the motions to keep him comfortable and I want so badly to make him better, but instead he gets worse. I guess sometimes I hope for a miracle. There simply is no cure for Parkinsons and dementia. I’ve got to keep reminding myself of that. My blessings to all of you going through this dilemma.

Feeling like there is no honorable way out.
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Reply to Starrysky

I have to agree with Marialake, the original poster. Mom is ABOUT MOM. Was she always like this? Probably. But she was more 'silent' about it because her and dad "understood each other" and got on well for 67 years. BTW, the man was brilliant, a saint in my eyes, a lighted soul who always helped and saw the best in others. He was truly exceptional.
So yeah. It's about her. Maybe at 91 I think it should be? I mean it's hard to think of others when you are close to the end of your life and alone, I guess. I try to put myself in her shoes. I am her "lifeline" literally sometimes to social interaction.

As far as the loss of freedom? That is probably right up there #1 with the sense of entitlement she has.

I know Ash has posted I am "destroying my family" by enabling mom and not stopping her and putting my foot down, but as an only child, it's easier said than done when I know for a fact that woman is alone in the world. The truly is. She relied on my dad so much that I bite off as much as I can chew, and sometimes more; and swallow.
I love her dearly, - we all only get one mom. There are days I wish I could be left alone. Days I wish I could take a vacation. Just days where I want to not be responsible. But in the future, I know those days will come.
And no, I don't feel I am destroying myself or my family. I know inherently that my love for her and my family is the glue. I'm the lynchpin of this family. I bitch a lot, and I come here to do it (thank you for listening) but there isn't much I would change in terms of forcing life changes on her at 91 (at least while she is coherent)...... still, yes I MISS MY FREEDOM.... but there is also a song... I can't remember the artist or the name of it, but it goes "Freedom is another word for nothing left to lose....."
They need us and there has to be something good in that.
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Reply to Nikki99
LVKDRA Aug 2018
Me and Bobbie McGee, I love that song too. I think it was the same guy who sang Mr Bojangles. But I wonder if it was written by Carole King - I should look it up.
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its not fair. they've lived their life, and i want to live mine! i don't want to be handcuffed to their needs, impossible, confused minds.
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Reply to LadyBelle
Nazdrovia Mar 2021
My thoughts exactly.
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My mother looking to me to take most of the responsibility and making excuses for my siblings who supposedly cannot assume even some of the responsibility. Living too far away, cannot afford to take time off from work, unreliable transportation. I live an hours drive away, I take unpaid time off from work, but I do have my own car. BINGO I win the prize as the official caregiver due to being the most reliable convenience, at least in your mind, mom. Do you not realize that as you scramble to find people to help you in your own home, siblings are not stepping up to help and I am further distancing myself from being your chosen one.
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Reply to Labs4me

In my case it is not the difficulties with mom, though naturally there are times I would love to just get the heck out. But those trips are to the grocery store.

What really makes this the most difficult is the attitude of other family members and the denial of the disease. Though denial keeps them comforted since they the do not see a reason to visit of assist in ways that would be helpful to me. For crying out loud, do not take mom to lunch, fill her up with sugar immediately after bring her home for me to handle the sundowning which is extremely difficult when that sugar crash happens.
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Reply to gladimhere

It's a thankless job in which everyone thinks it's your job and don't need their help even though I asked for help. Being treated as a drudge and not someone who is trying to help him. Watching my life go by. Dreams dying because I'm no longer adventurous but filled with fear. I think the verbal and physical abuse have made me so fearful of facing people. Yesterday, I parked my car and was so scared of going into the salon to ASK if I can have a haircut. I had to pep talk myself to do it. For a haircut! It's so insidious the effects of verbal abuse and to constantly watch the feet and hands in case he decides to hurt me. It's only 2 days of my weekend shifts and I can't wait to go back to work.
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Reply to bookluvr
Gigi4home Sep 2021
Please get help for yourself. It’s not selfish. There is life to enjoy.
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