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As stated in my original post when I joined this forum, I'm the sole caregiver for my dad. I wanted to not only ask the above question but also give some advice. I have noticed a change in my personality since caregiving. I'm no longer excited about things that I love. Why? I believe it is because I'm basically burned out and because my father and I have always had a stressful relationship. Yesterday, I noticed just how burned out I was when I pulled out in front of a car that I did not see. there was almost an accident. At the time, I was in deep thought about something he had said to me that he should not have. I'm often preoccupied with his negative words. I just started a new job and I cannot concentrate. Here is some advice to those who are new to caregiving or considering being the sole caregiver: Do not do it alone. Get some help if you can. As for me, I'm an only child and I'm sure there are others in the forum who are as well. I have mentioned getting Home Health to help, but he does not want to do this.


- It is ok for your parent to go to Assisted Living. Years ago, I said I would never do that. But now I think differently. This forum as helped me to see that it is ok.


Always put your needs first. If you do not, you WILL become burned out and depressed. I do everything for my dad. But I have learned to put my needs first. He has me to do everything for him and I have no one to help me. I'm not saying I need help, but I recently thought about the fact that he has to do nothing while I'm doing his tasks and half doing my tasks.


These are just a few pieces of advice. I pray that all of us caregivers will find the peace we need for ourselves. We only have one life. We must try our best to live it!

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I worry a lot and I’ve become very resentful of my parents for causing the worry. I am angry that my good years are passing by and I am still dealing with their issues.. Very depressed, angry and resentful. I don’t know how my husband can stand to be around me sometimes.

Caregiving has changed me profoundly. I miss the person I was. I’m not much fun to be around these days.
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ventingisback Aug 2023
“Very depressed, angry and resentful.”

If only there would be an easy fix to this. I think some people only finally feel free of these feelings after the LO dies. Then finally they feel free to live their lives fully.
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5 years ago my mom began her decline, at 85. In and out of hospitals, SNFs, in home care, caregiving agencies, etc. My other sibling lives out of state, I'm literally a story that hundreds of us have told many times on here.

My anxiety hit the moon. My mom has always been a controlling and demanding person and it magnified beyond anything I'd imagined. I walked on eggshells while she was bedridden, her yelling screaming demanding, guilt FOG, all of it. I sought therapy.

I was able to turn it around by setting boundaries and keeping them. I worked it through with my therapist at first, it was going to be worse before it got better and oh man was it. Then once mom knew I couldn't be yelled, demanded, guilted, etc., she became a much different person too. She doesn't like to hear, "Not today," when she asks if I can come clean out the toaster for her - yes that happened once, but she wound up doing it. She doesn't like to hear, "No," when she asks if I'll rearrange her kitchen cabinets - they're fine as is. The minute I rearrange and change everything she'll forget where it is, so it's about the control and "What can Grip do for me today?"

I became much stronger. I don't like the circumstances that brought it on, but I did. She has always been the one who guilted and demanded and threw tantrums when I was younger. Now my response is little more than, "Aah try something new." She's also a lot more civil, and in many ways friendlier. She has a caregiving team at home that comes in every other day and they don't let her get away with anything either, but of course they don't have the emotional component. She's finally realized that when she practices gratitude for things I/we do, it actually works better.

Hard to go through to get there, but I'm there. I wish us all strength, and luck.
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ventingisback Aug 2023
“it's about the control and "What can Grip do for me today?"”

I totally get what you’re saying.
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It‘s 24/7 caregiving a spouse. I wouldn’t wish this hell on anyone
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Justperforming Aug 2023
I am right there with you. I am caring for my husband, who is bed /chair bound. Especially hard as he has been abusive (not physically) our 41 yrs of marriage and told me several times he would not care for me. 😡
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I miss the girl I was so long ago. To be carefree and brave. To have the hopeful outlook that anything and everything was possible. Now I feel lost, isolated and exhausted...all the time, exhausted. And it's a sad commentary that someone has to die before we can find a way to nourish our souls bit by bit so we hopefully can become whole again. Most of us are in this waist deep and have to continually remind ourselves to breathe, never mind the astronomical task of self healing. All I want to do is sleep.
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ventingisback Aug 2023
“I miss the girl I was so long ago. To be carefree and brave. To have the hopeful outlook that anything and everything was possible.”

Please, please find her again. You will!

Life is too short, please find her again now (not after LO dies).
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Helping my husband care for his mother (now deceased) and father (will be 90) nearly cost me my health and sanity until I said "enough is enough" and refused to enable the "charade of independence" anymore.

Now, my FIL is in assisted living and I don't care that he doesn't like it. When my MIL got sick (neurodegenerative illness), he fell apart and often used her illness to gain pity for himself and get his way. He does not want anyone to know his ugly truths. And I wish that MIL was the one still alive because she was such an amazing human being.

This forum helped me figure out how to get my life back on track. My FIL is safe, well cared for, and has access to activities. He is more than fine. Now, I'm much more focused on being a thoughtful, loving woman who engages in mindful self-care. I now spend my energy and time on people other than my FIL and his vapid side of the family who are energy vampires. Life is for the living.
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Good post, I understand. Me, I have become impatient, waiting for this to be all over with.

Being a caregiver for me is no fun, it is drudgery, I do what I have to do for two people in homes, one in AL the other in MC. 4 years, heading into the 5th.

Maybe you are too involved with your fathers care, being in AL the basic day to day needs should be handled by the facilities staff.

Sending support your way!
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ventingisback Aug 2023
“I do what I have to do for two people in homes, one in AL the other in MC. 4 years, heading into the 5th.”

God…

(((Hug)))

That’s tough. I help my mom: but so many problems.
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This is an interesting topic. I did change as a result of caregiving. What I found is that it accentuated by strange personality traits. I am a planner and try to anticipate issues before they happen. That is my natural personality.

Caregiving made that trait impossible and incredibly stressful. I felt like I had a fly swat trying to kill every fly on the planet. I could never get ahead of it. So, caregiving probably did change my personality but it also certainly made my natural tendencies more pronounced. I was an absolute wreck.

My caregiving has ended. I am still swatting flies but they are manageable.
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I am 75 and my husband is 84 with dementia, We have been married 55 years. He is self-sufficient, but can not be left alone. (Leaves water running, turns heater up to 85).Also, he is hard of hearing, quit wearing his hearing aids, and difficulty comprehending. I realized the other day if this continues another 5 years, I will be 80. I am still very active and would like to travel. I know the only way is to have a caretaker come in to our home, or check on him a couple times a day. It is hard for me to let go. I do get out for a couple of hours a few days a week, but really can’t take him many places. Has anyone else had this conflict?
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Withgodshelp Aug 2023
I thought of you after reading this for an hour or so ! It really touched my heart! I wanted to say something and I am not a usual responder but it just stuck me so hard that You seem to be a really wonderful person! So please hear the care in my heart when I say what I am about to….ok ?
Imagine if you will……being a loving wife, who has a lot of activities in her busy 75 year old calendar, places, people, friends, of course chores, but also new things, interests, people , extended family, hobbies, and the loving responsibilities/connection of going to see your husband in care. You deserve a life, the “twilight” years to be your best you can be, whilst you still have health. it doesn’t mean you love him less, it means you will end your years in a happy frame of mind! And please know that I say this because I understand completely about the love and duty aspects ( I am 63, have a fulfilment demanding job and simultaneously care for-my 93 year old Dad (deaf but refuses hearing aid, taps on, recurring ??s, diapers, AND my younger husband , only 53 but extreme anxiety and trauma issues, and if not made accountable, would “let me “ do everything !
I have a lot of beautiful friends around me, they are unanimous! RE-INVEST IN YOURSELF TO FIND HAPPINESS- we only get 1 life…🥰
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You are learning through this, just as I am and I hope everyone is. I entered individual therapy as soon as I got my mother’s dementia diagnosis because I knew I was in for one of my life’s biggest challenges. Like you and your LO, my mom’s and my relationship has not been a close one. What I have learned:
- to try to shut her off in my mind. Not easy, but I have to distract myself when I start playing those unpleasant conversations on endless loop in my head.
- I can control very little of her situation. I try to let it be; to let go of what I cannot control.
- stop giving her power over my emotions. She has dementia. She has no power over me.
- her life is not my life. It is hers. I can help, but I cannot fix it.
The important thing for me is keeping my boundaries intact. I cannot help her if I am also sucked in to the mental chaos that dementia has placed in her life. It is a cruel disease and a health crisis that becomes more prevalent as medical advances find ways to prolong life beyond all reason. (My opinion.)
you and I are on the same page. Good for you for caring for yourself first.
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I’ve always lived a somewhat carefree life, I never wanted marriage or children. I moved to London for a time when I was 17 and also lived abroad in France and Italy. But now I’m much older and my health isn’t great, I get a lot of pain and suffer crippling fatigue. My poor dad passed away last year and my lovely mum moved into a nursing home and has advanced dementia, I’m her only regular visitor. I feel trapped quite frankly. She doesn’t even know who I am most of the time. I’ll never let her down and will always make sure she has what she needs but even with her being professionally cared for this new reality and responsibility is a bitter pill to swallow. I take my hat off to all those who care for their loved ones at home, you are living saints all of you but it’s also a terrible thing having to sacrifice what often seems to be your own happiness and well-being. You have to look after yourself in all this too so make sure to take a little time out for yourself too.
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