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Newbie - Carers UK Forum

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Hi Everyone,

I am new to this forum. I have been a carer for my Mum for a few years. She is 85 and registered blind, has COPD, CKD stage 4 and short term memory loss. She doesn't need personal care but I am visiting weekly to check she is ok (phone calls from my brother and myself and her grandchildren at least once a day). I check her fridge and freezer as she can't see out of date foods, check her blood pressure, alarms, and have a telephone monitoring system as she gets several scam calls a day - no longer as we installed a truCall device and were shocked at the calls - now on zap list! I take and arrange medical/social care calls and appointments and take her to such. Since Covid my brother has been unable to help/visit as he lives in Northumberland and Mum is in Edinburgh so 2 different home nations with different lockdown rules. She is very clever/intellectual and remembers everything about her past, previous and current politics, art and political history and is up to date with current events but forgets anything you tell her and is ultra anxious. She is in our care bubble, has a cleaner which she pays for through social care, gardeners she pays for and gets meals twice a week from her local church. Also very good neighbours. She phones frequently in highly anxious states about anything she is worried about. My children help where they can but are restricted due to Covid.
Sorry this is so long.
It is not as bad as a lot of you so maybe I am just being a wimp.
We also do childcare for 2 daughters twice a week for one - toddler now 3 in same town, and sometimes twice a week for the other - 4 and 7 year old in a different LA. We love the childcare and it wasn't a problem till end of February my husband had a stroke. Probably caused by a tear in the vertebral artery caused by undiagnosed high blood pressure and clearing the entire street from snow! He was admitted, started on medication and discharged after 2 days then overnight had a worse stroke. He was taken away in an ambulance and due to Covid I couldn't go with him. We got to say goodbye and he cried - rarely cries. I was inconsolable as I thought I would never see him again. My children came - TBH it was like f... Covid, Mum needs us. Childcare went to childminder - costly and other grandparents one of whom has Parkinson's and Lewy body Dementia. Health and social care have been excellent. Husband got home and the next week we had shower rails, physio, speech therapy, riling for doorstep and he is meticulous at all the exercises. We are sorting POA for both of us. I don't have to do personal care for him and he is making great progress but everything else is up to me to sort.
When he came home I could not stop crying mostly in the shower about what he was before and what he is now and how my life has changed and I feel so bad about thinking of me right now. I miss looking after my grandchildren, I'm not getting exercise apart from the short daily walk we do so putting on weight and I feel so selfish crying about myself. This week he is making progress and trying to do things he used to do but impatient and snaps when I don't do things immediately and this makes me so sad/cross and I feel like I need to self harm as I am not a worthy person. Maybe I am not worth anyone thinking about me and I am just selfish but it would help to know if this is normal to think this. So many of you have much worse things to cope with so I'm sorry to waste people's time if they read this. Elaine x
Oh Elaine,

Your feelings are normal. You are not a wimp! Caring is tough. This stroke has happened to both of you and turned both of your lives upside down.

Does your husband need you with him all the time it can you get in the habit of escaping for a short while each day and getting some much needed exercise?

Are you seeing your Grandchildren at all? Perhaps talk to your daughters about how much you miss looking after them and see if you can arrange something manageable e.g. a tea visit once a week or a few hours at the weekend or whatever suits you all.

Keep posting, we are here to support you.

Melly1

PS you might find this book helpful: This book might help The Selfish Pig's Guide to Caring: How to Cope with the Emotional and Practical Aspects of Caring for Someone Hugh Marriott don’t be put off by the title.
Welcome to the forum.
You are both going through a grieving process, it's hard.
However, you need to set a few "ground rules" together.
You will fight this together and not take it out on each other. You are doing your best, he must agree NOT to snap at you. If he needs something, he can tell you, but needs to respect that you have a house to run, and he's probably not aware of half of what that involves!!!
You need a bit of "off duty ME time" every day, maybe 2 to 4pm? Then you can go out, do your own thing, sew, snooze, whatever you want to, and he MUST respect this.
Hi Elaine,

Also sending you a lovely warm welcome to the forum.
You have got a lot going on and so its natural to have the mixture of feelings and emotions you are going through. But please know Elaine that Carers UK is here to help in any way that they can through advice and support.

You're not alone, we are sure that many on here will understand exactly how you feel and offer support. Caring can be very lonely and the pandemic has made caring responsibilities challenging as many carers have been socially restricted and unable to attend social groups etc.

Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you'd like to and there's no pressure to share anything you don't want to.

You can find information on how to register to our online meetups at the following pages:
Care for a Cuppa: https://www.carersuk.org/help-and-advic ... ne-meetups
Share and Learn: https://www.carersuk.org/help-and-advic ... e-sessions
Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (advice@carersuk.org)

They also provide information and guidance to unpaid carers. This covers a range of subjects including:

Benefits and financial support
Your rights as a carer in the workplace
Carers' assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions


Best wishes

Lucy.
Not sure if you are meant to reply. to yourself but wanted to say thank you to those who have replied to my post.
We have started back with childcare a bit. I have looked after the 3 year old at his house - same town - then brought him to our house for lunch and then taken him out in the afternoon. We went to our other daughter one afternoon and my husband stayed in the house while I collected the children from school and nursery, I then made the tea (daughter had it cooking in slow cooker) and we ate together before coming home earlier than we usually would have. My husband is tired after seeing the children and finds their higher pitched voices difficult.
He had another event on Saturday when I had to call the ambulance and we are waiting to hear if the MRI shows another stroke or extension to the previous one. He was in AE for the afternoon then at the TIA clinic yesterday. His consultant is very good. The stroke was probably caused by a dissection of the vertebral artery which caused clots in the pontine area and cerebellum. Very unusual stroke! It causes problems with hearing and speech and tingling down the left side with his legs not feeling like they belong to him so walking is hard work. He feels like he is on a ship all the time.
My brother and wife are coming up from Northumberland on Friday and will see Mum for the first time in months after lockdown so that will help me a bit. I have had to take her blood pressure daily as well as she had high blood pressure and was started on medication at the same time as my husband!
Sometimes I feel that my life I thought I had is over and feel pretty down. I've not spoken to my GP yet as you only get a call back and there is so much to do. Also don't feel I can talk freely on the phone. It is all new I suppose and take my hat off to all the people who have such difficult times on this forum.
Long term, this amount of running about just isn't sustainable.
It's time to think differently, before it's too late.
Counselling would be really helpful to you to deal with your feelings of loss with regard to your husband's illness etc, and help you sort out your priorities.
Here's an example of thinking differently.
Mum needed her blood pressure taken. Does she have her own machine?
She may need someone to help her, but that can be someone else, not you.
She needs someone to check her fridge, etc. etc. but that doesn't have to be you either!
Elderly people get very self centred, she wants you because you are her daughter, etc. etc. but these jobs can easily be done by someone else. My mum stubborly refused carers until she realised that opting for me was no longer an option, after I had cancer surgery. Her choice was carers at home, or residential care. Then she had carers arranged by Social Services, and she enjoyed hearing about them, their families, etc. etc.
She ended up having 3 carer visits a day, and paid for a gardener and a girl to do her shopping and ironing, but between them, mum had regular visits.
This may not be what mum wants, so you have to say "I can't do it mum because John is very ill" or similar.
Your daughters need to make other arrangements too.
Your husband has to be your top priority, and his latest stroke/TIA shows that he is very fragile indeed.
You must tell them that dad has to be top priority right now.
I know they won't like it, but they would feel guilty forever if your husband died because of the stress of running around them.

Be firm, very firm. Husband needs you right now.
He needs you to be calm, relaxed, rested, not running between homes like a headless chicken.
You are not doing yourself any favours either. When did you last have a lie in, read a book, go swimming, go on holiday?
"ME" time is so important for your own health and wellbeing.