It is really hard, emotionally and physically draining, to care for someone 24 hrs a day.

Yes, I cared for someone with dementia 24/7 for a month. It's been almost 2 years and I still have a PTSD from it, probably will for life. The lady was constantly combative - e.g. she'd push me to fulfill her craziest requests, and as soon as I did, she'd start calling me an idiot for doing it and berating me. It was insane. For make matters worse, the other two family members who lived far away were all about criticizing my work and showing me zero appreciation for me doing some of the work they would have otherwise had to do. It was nuts. Never again.

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I agree, 24/7 caregiving is like a prison sentence to those that are forced to do it. I did it for my MiL for almost a year, and in the time I was taking care of her, I can count on one hand how many times I was able to leave the house on my own. I knew nothing about respite care until the very end.

I will never ever be forced into caring for another individual, nor will I allow my children to be forced into caring for my hubby or myself. There has to be a better way of taking care of the elderly, the ill, and those that are dying from disease that don't harm family members in the process.

You sound like me. It is impossible to be a 24 hour caregiver without putting your health and etc in jeopardy. I had to learn after many years to say no sometimes. You can go back and read my original post. Please do not put everyone before yourself because you will regret it. I also have blood pressure problems and it always goes up when I'm stressed. About a month ago it was 189/99. Please take care!

Love xoxoxoox

I do think the people who find caring "rewarding" don't find themselves in a care slave situation.

Had I personally taken my inlaws into my home instead of "managing their care" at a nearby nursing home, I would have been in a care slave position and would have resented every minute.

My sister is in a care slave position with my mom and she gets resentful that the rest of us don't jump in to be care slaves along with her. Mom has the money to pay for care, she uses the promise of an inheritance as an incentive to keep my sister chained.

In my situation with my son, wow, now it's heavy demanding sleepless work. Daily walks are out the window, I hope for a chance to take a shower:) But I am not a care slave.

"Care slave" is a great description and should be avoided at all costs.

Burnt.

Never again is a smart answer! I bet the majority of people who did hands on caregiving feel this way.

It's okay to be #1 all the time. I took care of elderly people most with some kind of dementia for 25 years. I was a caregiver to my mentlaly ill elderly mother for several years who does not have dementia.

I am one-hundred percent SO done with caregiving. I will never take it on again.
It's one thing to help someone you to help out someone care about. Becoming a care slave to them is something else. Never again.

@Ckamelian, just wanted to say "hi" as I am another current 24/7 caregiver on the forum.

The hospice team just signed us up for an aide for 3 days a week - I'm thrilled to be able to count on a time to run errands and pick up groceries.

I badly need a haircut, that will be a game changer.

My sister once explained how she felt compelled to keep checking her phone while on holidays, in case someone had got ill or something dire had happened.

I realised that even for the non-hands on carers out there, just being involved, in the orbit of people with high needs can be very taxing.

I went 'off grid' (or acted as if I was) when on a break. I certainly encouraged her to do the same.

Separation anxiety is real. Interesting & uplifting to hear you talk about it Ckamilian.

Yes. Mid last year, I was asked to come stay with aunt for a week who has dementia. I did. I had no idea what I was in for. It's physically exhausting.
I can remember having my aunt's house cleaned. We sat outside in her yard while the cleaning people worked in her house. The skies all of a sudden grew dark. I told aunt let's go to your neighbor's house. It's going to rain. If I can tell you the effort I made to get her out of her chair to walk a few feet to the neighbor's house. One, she kept arguing that it wouldn't rain. Two, she kept falling asleep on me. I finally got her up and safe from the rain, but I actually collapsed from exhaustion she put on me. It's draining and local cousins that live near aunt expected me to move in and make this my life!

My already high blood pressure spikes often from the stress. It scares me.

Hiya happy , welcome !

So glad everyone got something out of that post ,I needed a little reminder myself !
A quick update . .I have found an adult day health program I take mom to on Tues and Thurs from 12 to 445 .. omygosh...I was really nervous at first, I stayed within a block worried something was going to happen . So yes I experienced some separation anxiety but guess what ,by the 2 or 3 time ,I practically live for those days! I feel so ..free ..almost like me ...I know it sounds small but trust me they need a break from you as much as you do them . It breaks the isolation ,it helps you reset , please do this for everyone I promise you will feel so relieved !!

yup i find having to answer the sane questions over and over can suck the life out of you. we had a family friend who died of a heart attack while trying to look after his wife who had alzheimers at home. i dont want that to happen but at times i think if it happens it happens. i have not been the nicest person from frustration having to repeat myself and not getting a break or chance to be alone in the last 15 months since my mom moved in. i am short with her, sometimes angry, sometimes ambivalent and because i apparently mumble (she does need a hearing aid) i end up yelling at her. its hard to get the right tone of voice. i know its not her fault, but i figured we would both live on our own forever so not happy with what its become. and feeling selfish because of all this. and i found out telling her that her mind is going is a big mistake, then she gets angry. to get her into a home here, the home care people have to come in and assess her. and i worked in a long care facility many years ago and dont want to put her in one because i saw the problems that happen. at the same time i cant do this forever.
any advice for how to be nicer?

You are so very correct.

I always knew I couldn't do it. I always encourage people to embrace their limitations, because quite honestly I have had to come solidly to terms with my own.
I was an RN. I loved it. But it taught me early on that I could never do home care 24/7 for anyone, least of all for a family member, no matter how beloved (and I lucked out with the best family ever).
I simply am not strong enough, good enough. I am too anxious to attempt it. I would be overwhelmed instantly. I would burn out. I would change my relationship to the one I loved inexorably and I fear permanently.

I loved my job. But I only did it three days a week.
I had five weeks vacation. I had a rich salary and I had 12 ill days and 12 personal/holiday day. I had help when I needed it (yeah, we all retired with bad backs; that's a part of it no matter HOW many body mechanics classes they give us).
There were times I loved my job so much I didn't want to leave my patient to another nurse the next day and would work extras because of this.

But that's not 24/7. And honestly, investing what you have to in the care of another human being, I don't see how it is possibly done.
I am kind of known here for my "time for placement" attitude. Yet I have read about people who devoted YEARS to the care of their loved one. Gretchen Staebler, who wrote a book I love called MOTHERLODE (memoir is recommended highly) came home to care for a Mom in her 90s. That mom lived to more than 100. She had the loving support of a sister in the same town and another who lived elsewhere. Still. I read that memoir with my mouth hanging open. And I don't know where this kind of devotion comes from.
Good post, Ck. Makes us all THINK, I think.
Best to you.

Thank you for reminding people of this important message!

When I was a caregiver my blood pressure shot up to unhealthy levels. Caregiving takes a toll on us emotionally and physically.

Ckamelian,

Take care of yourself. I wish you well.

Its time to place Mom. In Memory care if she can afford it on in a nice LTC with Medicaid paying. If you have been her Caregiver for at least two yrs in her home, you can claim Caregiver Allowance and remain in the home if you can proof you can afford the upkeep and bills. Medicaid will require her SS and any pension go to the LTC facility.

If Mom is not Mom anymore, she will not even realize you have placed her. I was lucky my Mom transitioned to AL and later LTC with no problems. She was in her 6 and 7th stage. Believe me its so nice to just be able to visit. Be able to sleep thru the night. Have time with ur DH.

That is why the statistics are so very high for the caregiver dying before the ones they're caring for.
We HAVE to take care of ourselves too as we ARE just as important as the one we're caring for.
I know that can be easier said than done when you're in the throes of it all, but you MUST remember to make/take time for yourself to do things that bring you joy.

And like the airlines always remind us when we are getting ready for takeoff, in case of an emergency make sure that you put your oxygen mask on FIRST, so you can then better help others.
It's the very same with caregiving. If we don't first take care of ourselves we can be of no good helping others.

I am glad you realized this before your health problems increase. You have to take care of yourself. That's a priority!!! I know it is not always easy, but it is essential. Good for you.

Hi all, newcomer to the forum here.

To this, yes, you have to put yourself first. You won't be any good to the person or persons you're looking after if you're in the hospital bed next to them. I speak from dang near experience.

Absolutely.