New to this forum and caring for my Mum

Hello! I’m new on the forum, looking forward to getting to know you all. Feel relatively new as a carer, although didn’t realise I’ve been doing it for years!

I’m Jon from south Wales (Carmarthenshire), looking after my lovely Mum who has had a really tough time with cancer and a bit of memory loss. Still finding my way and support her to be as independent as possible, while making sure I cover any gaps along the way!

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Hello Jon

Welcome to the Forum. We are a friendly and lively group and we share the ups and downs of caring. How old is your mother? Caring is very much a ‘learning experience’ . Do you have any family to offer support? Also do you have a local ‘Support for Carers’? I cannot get out for long periods easily to go to meetings, so I have a Telephone Befriender. They are usually very good and have often been Carers themselves.

Looking forward to getting to know you. I care for my husband who is 85 and has co morbidities and is also medically non compliant. This Forum has been a life saver at times and there is genuine support and empathy - we are unshockable. But there is also fun and yes, sometimes laughter.

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Hi @selinakylie, that’s really kind of you to be so welcoming and to share your experience. Mum is 77 and I’m 37. My sister lives and works in London and brother lives in New Zealand. I moved back to the area during the pandemic and I’m really glad that I did, as I’m 10 minutes away now.

Mum has quite a complex stoma and had major needs initially. We are now receiving care visits twice a day. But I’ve had to spend a lot of time training them up, but now most of them have the skills, it has made quite a difference.

I’ve also broken my back and ribs recently, so I am feeling really guilty that I’m struggling to be as hands on as I would normally

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Hi @Jonantz Welcome!
Geez, you’ve broken your back and ribs - OUCH! how did that happen, that sounds like a lot of pain and no way you can be hands on caring!!

Sorry, that leapt out of your last message! The very fact that you’re feeling guilty just shows how wild our carer-brains can get with emotional stress. We struggle with the impossible standard of trying to make everything perfect, to care and protect our loved one, and simultaneously struggle with our own needs and welfare. It’s a never ending stress where it feels we can do nothing well, let alone 'right…oooohhh sorry, stepping off the soapbox. I was just feeling a lot of empathy considering you’ve broken your back & ribs and feel bad!!

Back to my welcome - hello! It’s great you live close to your Mum. SO glad you’ve got care support set up AND trained them. Good for you! They’re going to have to do more or THEY can train another person for your Mum. Warning tough love coming… Please make sure you heal properly and well, ie. physio and strength training, I’ve seen a friend who tried to do things too fast out of impatience…not good!

I looked after my Dad together with Mum until he passed in 2020 - he had congestive heart failure, vascular dementia (due to a v bad hospitalisation in 2015), bladder cancer rheumatoid arthritis and he was only 79yrs old but very unstable towards the end. Now I care for Mum who has two different types of cancer. These are easier calmer days with giggles so we’re doing ok. I manage to keep a small consultancy business going and a website, so brain cells are still dancing a little - keeps me sane :wink:
oops long text… off to sort late lunch for Mum (post Countdown!) Take care, best wishes

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Hello @Jonantz and welcome to Carers Connect :slightly_smiling_face:

I have moved your first post and associated replies to a new individual topic in the New Members section where more members are likely to see it and respond to your initial post.

You are, of course, very welcome to continue contributing to our monthly Roll Call topic :grinning:

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Hi @Jonantz Croeso! The wonderful @susieq moving your post does make it more visible and I hope you’ll get even more welcomes/support and advice.

I’ve been caring for my husband for 2 1/2 years following his stroke. Since then it’s been a cascade of other health issues including cardiac and respiratory issues, eye problems and prostate cancer. Like’s a bowl of cherries, isn’t it? I never in my wildest dreams thought I would be doing this at a time we had planned for retirement from work and a time we’d be relaxing and enjoying life. Just shows you should never take anything for granted.

When we moved house 11 years ago I slipped and fell down a flight of stairs, fracturing my spine in two places. I thought I’d cracked a rib or two til I went to A&E two days later and they sent me home at 2am with painkillers and an appointment with an Orthopaedic Surgeon next morning. I was told another few millimetres deviation of the spine and I would probably have been unable to walk as I’d likely damage the spinal cord. I spent the next six months recovering - and yet still working. How I do not know. Just mentioning cos I can feel your pain and empathise with the pain and frustration you feel. I was not a carer at that time, so it must be doubly (at least) more difficult for you.

Is it possible for you to get additional Care visits - at least for the time when you are unable to do as much as previously? Right now you cannot (or should not!!!) be trying to lift or move her. While YOU recover you can still help her just by visiting and being around - so she has someone she knows and trusts on hand. THAT can be just as effective as actually doing physical care. You can still organise things for her and plan and co-ordinate.

Guilt !!! Oh I think we all know about that. Try (OK I know that will make you laugh) to set aside the guilt as I am sure you didn’t plan your injury. Graham keeps apologising to me and saying he feels guilty for being a burden on me and I have to remind him he didn’t ASK for a stroke or have one just to spite me! We ALL have guilt trips from time to time and they can make you feel very low, so try to put that aside (says he who had a major one the other day).

On here you’ll find loads of people with whom to compare notes and it’s a marvellous place to vent and voice the frustrations you feel without anyone judging you. We’ve all done it and received support from our peers on here, as well as given the support in turn.

Make sure she is claiming all the benefits to which she is entitled and check if you can get Carer’s Allowance, if you don’t already do so. CarersUK site has a Benefits Checker you can use. Financial support | Carers UK

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Another one here who can empathise with your pain ! As @Chris_22081 will remember at the end of 2022 I had a bad fall in our high street and ended up with 3 fractured vertebrae followed by a month immobilised and needing carers myself :unamused: At the time I thought I must have broken my hip but was lucky to have avoided that. Unfortunately, although much better now than I was back then, I still have ongoing lower back pain and have now been diagnosed with osteoporosis.

However I count myself fortunate that I’m now an ex-carer and don’t have the physical side of caring to contend with. At the time I was caring for my Mum (Alzheimers) I found the emotional side of caring was the worst - especially when it got to the stage that she didn’t know who I was - she knew I was “Sue” but I wasn’t her daughter Sue

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Side comment - my uncle whose funeral i am going to next week has spent the last few years with dementia and when my cousin visited him he would always think it was his sister (my Mum) and make comments about ‘we must sort Dad’s car’ and then told her he was so lucky to have a daughter like Sandra who took such care of him. It was, of course, Sandra he was talking to and she would break down in tears once she left him each time. Memory problems are horrible, but I have to admit his was mostly “Contented Dementia”!

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Hi @Jonantz great to meet you. I too am a Newbie, having only joined this week (was it Wednesday?). I care for my Mum who is 88, physically frail with a heart condition and mentally sharp with personality disorders such as narcissism and oppositional defiance. Have already felt the glow of other’s support on here and I’m sure you will too. I have a titanium leg and arm following two falls in 2019 and 2020, my osteoporosis means my bones snap like twigs, but as others have said, these frailties fade when you become a carer. Sending best wishes to you.

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@Jonantz
Welcome to the forum Jonantz.
What a difficult and emotional rollercoaster you are on.
I’m an ex carer too. My lovely husband suffered strokes vascular dementia and other health issues. Eventually he needed a nursing home. For his safeguarding as well as mine. Broke my heart.
He too broke his back many years ago. Parachuting for charity! It was his 5th vertabrae from the bottom of his spine. Fortunately he made a good recovery. Obviously it was a weak point still. Another difficult time.
He is very much missed by family and myself. However, throughout the pandemic we wouldn’t have been able to visit him and would have been frantic. They were very good mostly but we did have to care manage. Recently my own health has taken a dive. Fortunately on the up now.
I really hope you can get some help for your mum. You really need to care for yourself. You must be in dreadful pain plus strong painkillers have unwanted side effects

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