feel so lost in my life

All about caring Former carers
1

hi all, I have been a carer for my dad, mam, husband and mother in law for the last 20 years.
in those years i dealt with mini strokes and the affects of Alzheimer and dementia and as other carers know, these are 24/7 situations for family carer.

I gave every minute for 2 years to my dad who had mini strokes and lost bits of himself with every stroke, he became violent and wouldn’t remember he did anything. i looked after my dad for 2 years before i broke and they arranged for nursing home for him, something i felt so guilty about.

for a few months after i tried to get back into my own life and then out of the blue my mam was diagnosed with Alzheimer disease. and again i was back in the caring position. i asked my brothers to help with mam as she was so hard mentally to take care of. she would ask me the same thing 1000s times a day, to the point where i learned to switch off my hearing…sounds mad, but i needed to keep my sanity.

for 8 years straight i looked after my mother with minimal help from family. but i was determined that she wouldn’t end up in a nursing home.
mam would go to day car every day and i would drive down to see dad every day, sometimes i would be driving so fast coming home that i would be afraid i would miss the bus bringing mam back home. the phn were always checking to see how things where going, was the house clean, mam clean and fed etc.

i used to feel like screaming at them, it would be better to help me instead of watching for signs i was failing.

the hospital was a nightmare, trying to make sure she was put on a mattress that would stop her getting bed sores, as she couldn’t turn herself very well.
it was in the hospitals that she got a bedsore, i was furious as i was her carer for almost 8 years and she never one had a bed sore because i make sure she was moved.
every 30 mins or so i would put a song on and say " hay mam do you want to dance" and i would hold her in my arms making sure she was moving to get the blood was circulating.

in 2007 she passed away from that flaming bed sore, she got mrse and mre. it wasn’t even on her death cert which annoyed me so much.

on the day after my mam was buried. we went to an appointment for my husband and we were told he has a brain tumor…to say i nearly dropped is a understatement. I came out of that appointment in a daze. 2 months later we were called back to the doctor and he told us that what he thought was a tumor was brain damage from an accident he had when he was 18.

life when on for a while with me as angry as hell at the hospital for how my mam died.

then my hubby was involved in an accident that put him out of work for 6 years…and again i was in the caring position.
in that 6 years he nearly died 3 times from meds he was given from doctors.

I felt wrecked and exhausted in a way i cant describe.

in all of this i used to bring my mil shopping and to her appointments, so i kinda fell into looking after her without really wanting to…,i didn’t think i had it in me.

but you learn you get strength from somewhere when you need it.
she had dementia and god love her she was so confused, she was always as sharp as a tac, and now not to be able to remember was killing her.
so it was nursing home or someone stepped in and i was the only one who ever helped her so it was me
i looked after for 18 months for 18 hours a day, until the doc said that what i was doing wasn’t enough, she needed 24 hour a day care. I cried my eyes out the day they sent her to the home, as she had asked me to promise never to let that happen to her. but it was out of my hands, there was no one else to help me with her.

after that i kept busy getting her house ready for sale or let and then started to do a well needed do over on my own house.

I was 36 when i became a carer and without me noticing 20 years had passed.

since then i have been at a loose end, feel like i stepped out of my life 20 years ago and don’t know how to step back in again.,
i cry a lot because i am so lonely, i don’t have any friends anymore or job because i gave it up when i was looking after my mam 24/7.

I am sorry this is such a long winded thread, but i just needed to tell someone how i am feeling as i feel like my life has come to a stand still

2

Hi Eileen

I cared for far fewer years than you , the first five not realising I was caring and then 5 years of fairly full on care but having come out the other side I don’t htink it is possible to step back to where you left off from. Life moves on and caring changes us and it changes our skill set. I did some care work when I cared for Dad and I still find myself doing it now. I think it is easier not to try and pick up where you left off but look to the future. Try and think what you want and how best to get there. Make your dreams realistic and not full of regrets for the paths you have chosen inthe past. If you were presented with the same choices at the same time all over again you would probably still have done all the care and even if you think you wouldn’t you can’t go back and reclaim those years. Try to focus on the future and the positives that lie ahead.

3

Hi Eileen,
Henrietta is absolutely right. You are older than you were and have been through a lot.
I’m not the same person either, in total I had 10 carees in 40 years, and I was widowed suddenly when I was 54. I was desperate to do “the right thing” just didn’t know what that was.
Somehow, you need to let go of the past, or it will ruin your future.
Google “Balls in a jar theory” to start with.
Then buy a copy of “Starting again” by Sarah Litvinoff, aimed primarily at newly divorced, there’s a lot relevant to anyone facing a change in life, and it’s very easy to read, pick up when you have a few moments.
What is your current financial situation? Can you afford some private counselling? A holiday?
I’d recommend starting with some “self care”, because you have been through a lot and may not have had a moment to look after yourself. A trip to the hairdresser, a facial, using face cream regularly will all help. When did you last have a new outfit? Or sort out things in your wardrobe that have bad memories attached to them?
Is your home full of someone else’s “stuff”? I looked round mine one day and realised how much there was in mine that I hadn’t chosen. Some went in the bin, some to the charity shop, some to the auction house. Start with the biggest items or the things you hate the most. Try to reduce the bad associations with things. I loved the bedding my husband and I used. After I found him dead in bed, it all had to go, whenever I see that pattern (it was a popular Dorma design) I have bad feelings.
When did you last decorate your home? Change the curtains? Does it really reflect who you are, not who you were? If you are on a tight budget, join your local Freecycle group and “Facebay”, local selling groups on Facebook, my son and I have both had some real bargains this way.
I know none of these answer the question of “what do I do now” but in doing these things, you will gradually develop a new mind set, looking forward. Try doing things you have never done before, a live play, a concert, a walk, a coach trip somewhere new, even a different café. Be very aware of opportunities, but don’t do anything to fill the time, do things that will make YOU feel more fulfilled again.

4

Hello Eileen
I so agree with Henrietta and Bowlingbun.
Its not easy but the first step to your own needs will encourage you.
I lost my husband in May, after a long battle with strokes, vascular dementia and other health issues. He had been in a nursing home for a few years.
Have been plodding with house refurbishment, still am and quite a way to go.
Been on a few day trips and found them very enjoyable.
Lots of things have been donated to my friends favourite charity which is for our local animal sanctuary. I feel fine because my donations have help both people and animals.
I really understand Bowlingbuns feelings on bedding. Our favoured sets were given to my Grandaughter, when she moved into her 1st bought house. She loves them and I love my new sets. Little things can make you feel you are achieving.
I miss my husband dreadfully, have good days and down days, but nothing will bring him back, and he wouldn’t want me to drown in misery.
You have been a wonderful person, devoting all of your time to the needs of your family. Time to devote time for yourself, slowly and surely, and to find the new you.

5

Hello and welcome. Sell all her things on Facebook etc. When my cousin passed away earlier this year, after about a week, I set about selling her things. Use Facebook Marketplace or donate to local charity shops.
Alternatively try selling them on classified sites like Craigslist or Gumtree. Use the money to treat yourself properly. What about a massage? When was the last time you had me time?

6

Hi Eileen

You should be proud of what you did for your family. I was a carer for my brother who was blind and died in 2017, my dad was in the hospital at the same time and was diagnosed with Parkinson’s and died in June this year. I gave up a part time job to be dad’s carer but we had carers every morning and twice a week to sit with him so I could go out.
I have applied for jobs but my last place of work didn’t send a reference so it hasn’t worked out. I have just applied to a charity shop to do a bit of volunteering. I know what you mean about being lost it’s a funny feeling.
I try to spread out my shopping throughout the week so that I have to go out even if it’s just for milk.I go for a walk everyday to get fresh air and gym a couple of times a week. My brother moved back home after a split but he works nights I find the evenings very long. I have just started Yoga on a Friday evening at a community centre close to me.
Is there a church or community centre near you ? That you could go to sometimes they have friendly groups or lunch clubs and some you do not need to be members.
It can be hard to put yourself first after being a carer but you must look after yourself . I have times were tears come from nowhere but I go with it and let the emotions go.
Try writing your feelings down in a journal . Grief can take time and there is no time limit on it. You are in early stages.Take care there is a lot of help on the forum.

Paula

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Please read this article on grief Coping with Grief and Loss - HelpGuide.org.

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To say you’ve had a heavy load would be an understatement. i’ve been a care for nearly 25 years and that excludes the time I cared for my Mum as a child. Mum passed away a bit of a month ago.
I haven’t worked in decades outside the home. My world has been turned upside down. I lost both parents and my identity. The problem is I now should get work but am in not fit state due to exhaustion and grief.

I’m trying to work out how long I can go financially before I have to get something. I’m dealing with a brain fog and the very least I feel I have to get something less taxing. Our worlds have been turned upside down. There’s exhaustion, new roles and grief. No wonder it is hard. I feel lost.
Like another poster I might do some work in a charity shop just to get a reference.
I don’t feel enough is done for carers, who suddenly find that there lives have been turned upside down by the lost of loved ones and their caring role. If we were released from prison we’d be given help!

9

An old thread of mine might be of assistance here , Daffy :

https://www.carersuk.org/forum/support-and-advice/former-carers/when-the-caring-ceases-some-thoughts-as-to-what-to-expect-31598?hilit=former%20carers%20prison

That " Prison " aspect … dates back to 2004 and the very first carers forum on the old PRT site … met with some skepticism over the years but … most apt ?

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Thank you.