Hi all, I hope I’m posting in the right place, I’m very green when it comes to forums.
I’m currently caring for my Mum who has mixed dementia and my partner who was diagnosed with Leukaemia 12 months ago and had a stem cell transplant last November.
I also cared for my Dad until he died in January from bowel cancer, my Dad was my mainstay and support, I’m so lost without him.
@Justme …Hi, welcome to the forum. I’m sorry you’ve been through so much and still are. Hopefully you’ll find this forum a great help.
hi @Justme ,welcome to the forum and you are in the right place. You are welcome to come onto the rollcall where there other carers you can talk to and to let off steam. There is plenty other things we do on here apart from talk about issues and that . We have a book club section where we can about any books we read and photo section for both our hobbies and garden to share with other.
Sounds like you are in a right pickle . Have you got any support not just from family members but groups or charity’s that can help you with cost, support, etc. It is hard to lose a family member through any sort of illness . I hope the doctors help you and the disrtict nurses as well. Also in this link I will put is to Hebert protocall which will help if you mum goes walk about. https://herbertprotocol.com/
all the best.
Hi Justme, welcome to the forum, you have a tough situation to deal with. What help and support are you getting?
How old is mum? The benefits she is entitled to depend on age, but if she is claiming either PIP or Attendance Allowance, she should be exempt from Council Tax. Many people are unaware of this, so whenever dementia is mentioned, I just check.
When did Social Services last do a Carers Assessment for you and a Needs Assessment for mum?
Don”t be afraid to ask anything on the forum or worry about putting things in the wrong place. Our mods and our members are all current or forum carers, we all understand the challenges of caring.
I have a 47 year old son, brain damaged at birth, and I supported all four parents before they died. I’m a bit unusual, I married a man with a steam roller, I’ve worked in outback Australia 1,000 miles away from anywhere and shipped steam engines across the world! Sadly my husband died suddenly 20 years ago and soon after I was disabled in a car accident, and now arthritis is a huge challenge. I’m often what we call a Night Owl here!
@Justme , like you, I’m going through a bad time. I lost my mum just over 6 weeks ago. I feel your pain. You are in the right place for advice. Carers UK have a hotline you can contact. They have staff who can help.
Thank you for your kind responses, I was feeling a bit overwhelmed last night but a good nights sleep works wonders. Mum slept through the night last night so that was great, although I was sleeping with half an ear on the monitor.
I worry that because of Mums disturbed sleep patterns my partner is not getting as much rest as he should, recovering from a stem cell transplant is a massive thing, this in turn puts me under more pressure.
My sister came this weekend to give us a short break which was fantastic, time to recharge.
Mum is 90 and does get attendance allowance, she was assessed by the adult social care team only a few weeks ago. We now have carers 30 mins every morning and lunchtime twice a week when I have to take Chris to the hospital for checks and treatment etc. I live in terror that Chris will relapse and end up back in hospital, I just don’t know how I’ll cope with Mum then.
I have had 6 months off work but tried to return to work 2 weeks ago and it just didn’t work even though I was trying to work from home, Mum can be quite demanding and she just doesn’t understand that I am working. I am seriously considering early retirement but feel I should be able to cope with working from home. TBH giving up work makes me feel like a failure or lazy.
To top it all off with caring for everyone else I don’t feel I’ve been able to grieve for my Dad and it’s making me feel resentful of everyone demanding my attention.
Just being able to say this has made me feel so much better and not having to bottle everything up and be brave.
Thank you so much for listening.
Jan
I think you are being a bit hard on yourself.
I’m 74 and the biggest disadvantage of being older is that I run out of energy so quickly.
You are not Wonderwoman, although everyone wants you to be, they all want to be your first priority. On the verge of a breakdown I had counselling to help me deal with that issue. my husband died suddenly in his sleep from a massive heart attack, when just 58. I’ll always blame the stress of caring.
Until recently you were caring for three people, and that’s incredibly difficult. At this stage of the grieving process your thoughts are all over the place, it’s to be expected.
Have Social Services assessed mum recently?
Have they mentioned the fact that they may be able to pay you Direct Payments for caring for mum?
How long have you been caring for mum and dad without a proper break?
Maybe it’s time to think about some respite care for mum?
A care home near me offers “day respite” but every area seems to be different.
It would be lovely for you to have time just to do something entirely for yourself, for once.
Yes Mum was assessed only a few weeks ago, that’s a great idea about the attendance allowance I’ll try and speak to adult social care tomorrow.
I took Mum for a taster day at a local care home but she wasn’t at all keen, I’m not sure if it was a mistake that I stayed with her. In that sort of situation is it better to leave Mum with the staff ? The reason I ask is there is another care home which comes highly recommended which would be perfect for a weeks respite care but I don’t know the best way to go about bringing the subject up with Mum, I know she will be very resistant but I think it will do us both good. She was married to Dad for almost 70 years and they did everything together so it must be very daunting for her to go somewhere alone.
Thank you so much for listening to me wittering, it’s such a relief to put things into words and get some perspective on my situation.
I was 54 when I was widowed suddenly 20 years ago. I have built a new life as much as possible, but miss my old life every day. Hard as it is, mum needs to accept someone other than you looking after her. I have said here many times that if you love your caree enough to look after them 50 weeks a year, they should love you enough to let you have 2 weeks off! I escape to Crete for 2 weeks every year, I come back feeling 10 years younger. Don’t feel guilty looking after yourself.
Hi @Justme welcome to the forum. As others have said, the forum has been a great help to so many of us. Somewhere to vent, a source of all things caring and a willing to share experiences, empathy when required and a place just to chat. We share gardening tips, book recommendations, photos, recipes and so much more.
You sound like you’re having a really hard time, and no wonder, with all you have to deal with. Carving out time for yourself is essential, but not always easy to manage. If you can’t work, and that’s no surprise, you can’t work. Caring is a huge job in itself. If you count up all your caring hours, you’ll probably find you’re doing a full time job caring.
I’m part time carer for my 99 year old Mum. She is severely sight impaired, hard of hearing, has cognitive decline, chronic neck pain and that’s just the biggies! She is also very stubborn and set in her ways, gets frustrated and tries to underplay her issues, “I’m not hard of hearing, you mumble”, “there’s something wrong with the washing machine, the alarm clock etc etc” (there isn’t!), “you said so and so” (when I didn’t). You get the picture.
This time last year, things were at breaking point “ I never want to see you again” etc. etc. However, I went on a “caring for dementia carers” course (run by a Cornish charity Promas), and an NHS sleep better course and they have been life changing. Yes, we still have difficult times, but overall things have improved. At the time, I didn’t think I had the time to do them, but they were time well spent.
One piece of advice I’d offer, is tell people about your situation and accept help when it’s offered. I’ve been amazed how much emotional support I’ve received. Mum won’t accept help from anyone other than me, my sister (in Canada) and my sister in law (up country), which is really frustrating when she says she never does anything or never goes out!
I wish you well.
Hi @Justme Welcome from me, too!
Think carefully about whether you can cope with working, given everything else you’re doing. I’m very much of the opinion that you’re working more than a full time job as a carer, let alone anything else. I had to take early retirement at 63 because I couldn’t carry on caring for my wife and sons and stay in work without ending up in hospital or worse. In which case I’d have been no good to anyone.
I’m now 68, and although I have my own health problems, I’m coping with the caring and find it hard to imagine how I ever coped with working as well!
@Justme , let us know how things are going.
Hi all, thank you so much for your kindness and understanding, it means a lot to just be able to offload to someone.
Things are not too bad at the moment although I do have a HR meeting tomorrow which is adding to my anxiety but Had a lovely walk in the woods with the dogs today and that has recharged my batteries a bit.
A minor win today was finding slippers for Mum that actually fit her swollen feet, she’s really pleased with them, if she’s happy life is a little easier.
Take care everyone, speak soon x
HR should know that they must make reasonable adjustments for you as you are “Disabled by Association”. If the put so much pressure on you that you resign, you could sue for Constructive Dismissal!