Just had a conversation with my mum about her health, not how I wanted it to happen

All about caring
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This has been something on my mind for a while as her health has been getting worse and it’s very visible. A lady at her library group was quite overt in trying to help my mum when she was going to the toilet and move around the table (she goes to the group alone after I drop her off and pick her up). My mother uses a walker and is already very self concious about that in the confined library spaces, but she felt slightly patronised and belittled by her friend and is now very aware that her poor health is showing. I’ve wanted to bring this up and have gently pushed a bit about stopping doing odd jobs and things like the washing up and laundry, but she says it keeps her going and gives her something to do. I feel very uncomfortable about this as I’m supposed to be her carer and people may think why is she doing the laundry!

So just now somehow it got on the subject and the dam broke. She started talking about how being in a flat on her own she couldn’t do this and that and she’d have to get people in and I was saying that I’m not going to just abandon you! I’m sure she feels like she is being attacked and I tried to say I’m only trying to do the best thing for you and me. My health is getting worse and my life is going no where, what am I to do?

I knew this was going to be a nightmare, whatever choice I make I’m utterly f’d. I either carry on as I am, barely coping and my life is going to go nowhere and one day I’ll wake up and old man or push my mum to lose the only independence she has left and been even more alone than I already am. What a choice.

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Hi Simon A, welcome to the forum but don’t beat yourself up over it. A lot of carers have been in the same boat as you. Go and see a GP for a start and tell them that you are a carer but also about your health, don’t hold back. Get in touch with the carers helpline and they can put you in touch with help. Speak to us on the roll call speak to one of the helplines like the samaratiens. If your mum wants to help let her do something small but also tell her gently to stop or that you will do it. I know it hard to tell your parents what to do but you know ways to tell them than some people like social worker etc.

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Hi Simon,
It’s never easy, no matter how you decide to go about this. I care for my Husband who has Parkinsons and at the start of our PD journey I was very self conscious of how my caring looked to people outside of our circle. Twelve years down the line and I’m past worrying what other people think. If your Mum says that doing certain jobs helps her to maintain some independence then that’s great, and you are still being a supportive carer by enabling that to happen.

It might have seemed a nightmare at the time, but you two have at least started a conversation around what is an appropriate level of support. Your life need not come to a halt because you care for your Mum, neither should hers just because she needs a little help.

You don’t say whether you have or not, but you might consider speaking to your local council social services dept about getting a ‘Needs Assessment’ for your Mum. It can unlock a whole world of support that may be useful for you both.

Take care- Teddy

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Hi @SimonA and Hi @Teddy123!

Welcome to the Forum! Great to see you both here.
For some friendly banter and over-the-fence chat - try: https://forum.carersuk.org/t/roll-call-january-2024/124289/369 Roll call is an everyday chat, @susieq starts a new thread each month

@SimonA could you share a little more about your situation - are you living with your Mum in your house, her house, 24/7? Do you have family support - siblings, aunts, uncles, or any friends / neighbours support? what’s the current situtation with the GP practice - like @Michael_1910123 has asked do you feel supported (You yourself, and also with respect to your Mum) in terms of the medical people or any other ways? It’s good to share a bit more as it sounds you’ve already been caring for your Mum for a while?!?!? Only share as much or as little as you want, I’m only asking so I don’t tire you out having to explain or justify what you’ve already done!!!

As @Teddy123 says you’ve started a more pointed conversation - which is NEVER easy and there’s no easy way to broach the topic or make sure it is a success. There’s no such thing. We’re all human, feeling fears, anxiety and a whole host of stuff which - unless we were telepathic - is impossible to fathom outside the person’s head! On top of that our parents are a different generation who are conditioned by a whole host of expectations which are VERY different from your/our/my generation :wink: AND on top of that whatever Mum-Son dynamics you had will play out - whatever story-baggage you have or she has… So Sorry to lay all that out but I wanted to highlight that you’re doing the best you can - and that’s already sounding like a LOT - and unfortunately, you need to recalibrate your expectations on things…

What I mean is you can’t stop mismatched thinking between her and you.
Like @Teddy123 mentioned it’s worth getting a Needs assessment done, if you haven’t done that already - perhaps an objective assessment from a 3rd person can offer her more food for thought? Although, she may flat out refuse the need for one…

Perhaps you can share if she has any cognitive issues, can you share more about her ailments?

It’s really tough when you’re worried and you want to keep her safe. From her perspective, she may be feeling frustrated she can’t do things she used to do, and impatient with herself and grieving the loss of her youthful abilities…overlay that with - if she’s a strong will independent lady - becoming beholden to others for help, or losing her identity as a strong capable women…then later comes a feeling of being ‘jailed’ into doing things you want …I’ve seen/felt this line of thinking from my Dad but also other carers.

May I suggest that you don’t make a plan and try to persuade her to do it, instead open the follow-up discussion with questions, be curious with open ended questions and leave plenty of time and space for her to find her words. Try to avoid the absolute practicals of money, will writing…and stay in the lane of everyday activities, going to the library, getting around… (you’ll be surprised - or not - at how some gentle questions can get twisted into accusations about money-motivations etc etc).
BUT here’s where us, understanding your situation more fully is best - how ‘safe’ is she, are you in the house, getting around etc? How’s her mental capacity?

medical safety, emotional welfare and well being are not small considerations.
Hope that offers some food for thought and empathy!
You can only do the best you can. She sounds like a wonderfully strong lady who is becoming more aware and frustrated. Sending best wishes to both of you.

FYI
I started helping my Mum look after Dad in 2015, whilst I was working, then I resigned and helped them full time. Dad had numerous conditions heart failure, rheumatoid arthritis (so a lot of mobility issues) and bladder cancer and Vascular dementia. When things were at their worst end of 2019, Mum was diagnosed with 2 separate primary cancers. I took care of Dad full time (toileting, shower etc etc), and supported Mum through her investigations and cancer diagnoses. We managed to fulfil Dad’s wish to die at home (despite paramedica calls at least once a week in Nov & Dec 2019…). Jan 2020 we managed through the funeral service things, and then 16 days later Mum had her first surgery. so not a covid year for us but a Cancer year.

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I’m semi disabled now, my eldest son lives with me, we both know that after a lot of operations etc. I’m unable to do any of the things I used to love, frustrating at times, but true. He uses a phrase “your work is done” and at times tells me I’m f’d in a kind way. (Part of my degree involved when you can and can’t tell someone that!) and I’m very broad minded. I would suggest that you don’t tell mum to give up dealing with the washing, but do think about doing your own. My son has upstairs, I have downstairs, he has his own washing machine in the bathroom and does all his own washing. Do you have a tumble dryer to make life easier for both of you? If I’m tired I have food in the freezer for days like that, or we go to the chippy. We have gradually done away with all the borders in the garden, it’s now just a patio and lawn, but easy to look after. Think of a friend of mum’s who doesn’t have a son or daughter to help and point out mum’s situation is so much easier. Does mum tell you if she’d like a hand with something. Do you ask if there’s anything she’d like a hand with? Maybe get a cleaner one day a week, if mum would like it. Some female company and odd jobs done too. Is mum claiming Attendance Allowance?

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Tell us more thank you.

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Simon,

First of all, you do what you need to do. It’s not for you to worry abut what other people think, it’s their problem to accept what they see,

You’v got to ask yourself what is it that you are prepared to do, how much do you want to do, and what and how much are you comfortable doing. This will give you avenues to explore about getting help and getting things in place to allow you to do what you need to do.

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Hello Simon.

I care for my husband, Graham, after he had a stroke 2 years ago. He started to make progress with recovery but that plateaued and he has had a cascade of other medical problems since.

The stroke meant he was unable to work and we had to close our business with little notice. That left us with no income and resorting to savings.

I can empathise with your issues over how much you have to do for Mum and how this can be interpreted by others, as well as how she feels giving up control of her life. Graham and I have had similar issues. He was fairly active and as a Medic, saw up to 25 patients a day while I ran the business side of the Practice. Suddenly it all stopped.

These days he manages to fill and empty the dishwasher - but suffers from fatigue so either has to take a couple of breaks when emptying it or just never gets round to doing it then moans if I do it (when we need crockery for a meal!!). I try to let him as it’s one of his few bits of independence still remaining. He can shower himself, but always ensures I am nearby in case he falls or just gets stuck. I do the washing - loads of it due to continence problems - as there is no way he can change a bed.

I agree with yours and BB’s comments my life is f’ed too! Many of our friends have fallen by the wayside as we cannot go out socialising (not that we were party animals, but now we see very few people) and it hurts.

In trying not to take too much of Graham’s independence I am finding he is often happy to let me deal with things as his attention span and memory are not great. After medical appointments we have a ‘debriefing’ on the way home as he says “what did he/she say?” when his short-term memory fails.

He doesn’t like using his wheeled walker unless he has to and prefers to use a stick. However, we went to the village pub for his birthday/our anniversary a couple of weeks ago and he nearly couldn’t make it back to the car and we had to use a fire escape to shorten the distance! He had double padded before going out as there is one step into the loos at the pub and he cannot manage that!

The feeling of losing independence is, I think , the worst thing of dealing with any ongoing ailment and can effect a person’s confidence and feeling of self-worth.

May i suggest you encourage Mum to keep doing some washing - even if you have to double check it - so she feels she is doing something worthwhile. If you can afford a cleaner a few hours a week she may appreciate the company rather than seeing it as an intrusion or confirming her lack of ability.

You’ve managed to have a conversation which is great. SO I hope you are able to keep that up.

As has been said - make sure your GP, and Mum’s, know you are her Carer and see what help they can offer. Sometimes you have to tease out the information which THEY think is readily available.

Please remember that this site is great for sharing experiences and getting help and advice as well as a place you can VENT your frustrations without feeling bad about it. We’ve all done it and got a LOT off support from our online friends.

Best of luck.

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Hello, Simon. Carees sometimes want to remain as independent as possible, and this is usually no bad thing. For example, I sometimes see my caree struggling to get up from an armchair, but my offer to assist is rejected. She does not want to become totally dependent on me, so does what she can for as long as possible.

You are concerned that onlookers may see this as you not caring as much as you could, when they rush in to assist. It pays to be a bit chatty in the company of others. Just a few brief words along the line of, “Thanks but Mum prefers to be independent where she still can.” Then follow this with a light-hearted comment about the weather or something. This softens what you have just said, so it does not sound like a counter-criticism.

Many people are so helpful; they mean well and sometimes try to be too helpful. They even often to help me, the carer. You would not believe the number of times people offer to help me put the wheelchair in the car. They see the grey hairs and think I cannot cope. I usually say something like, “Thank you but I can manage - I’ve had plenty of practice!” (This needs to be done carefully, because the handle can become caught in a corner, making removal difficult, but I know the knack.)

Be grateful to would-be helpers, but gently indicate your Mum’s wish to help herself where possible.

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Hi Again Simon

Just some additional thoughts and observations - mostly endorsing what others have said.

A Carer does not have to be a Nursemaid doing absolutely everything for a Caree. It always depends on how the person can manage and what THEY want to do for themselves.

After Graham had his stroke I would get in the shower with him to ensure he could sit on the shower seat safely and then get him up from it. Now he showers alone - preserving more of his dignity - but always makes sure I am nearby in case he gets stuck or falls. Likewise he gets himself up in a morning and dresses himself - the only time I help is if we are going somewhere which makes him feel he wants to be smarter than usual and I help with his tie and shoes (not to mention making sure his shirt is tucked in!!)

He can get his own drinks although I do all the cooking as he can’t stand long enough for that. Also he fills and empties the dishwasher and does the ironing as he can sit to do it - even though he takes ten times longer than I would. It means he feels he contributes to the household chores. OK I still do all the cleaning and washing and changing of beds etc but he does SOMETHING and is not sitting watching me do it all - even if it feels like that sometimes.

Everyone is different and some people do not want to push themselves to do more while others cling to small things to maintain a level of independence.

May I suggest chatting with Mum and asking what she would like to do and what she would like help with. That way you will both know where you stand and you won’t push her into a situation where she gets frustrated and won’t be trying to second-guess what she wants.

I don’t help Graham get out of a chair unless I can clearly see he is feeling weak. When we went out for an anniversary meal a couple of weeks ago, he was very tired when we were about to leave and I saw the signs and said ‘come on Old Man, my arm is there when you need it’ (it was his birthday and our anniversary so I could get away with that comment!). He gratefully grabbed my arm and we made VERY slow progress. Other times I would simply walk ahead slowly but keep an eye on him in case he wanted help but didn’t feel he could ask.

It’s really difficult getting to know and spot the points where help is needed and it’s something we have managed to chat about and I try to make a joke of his lack of mobility sometimes ‘don’t worry there are only seventeen people waiting to get past - two others gave up and went home’. “Black humour” but it often gets a wry smile from him. I learned that from dealing with my Mum when she was in a chair and able to do almost nothing for herself due to MS. Humour was the way we got through some tough times.

People wanting to help is always a problem as they ‘mean well’ but don’t approach in the right way. I have stopped when someone appears to be struggling and just make the offer ‘dis there anything I can do to help or are you better off doing things YOUR way?’ That indicates that I UNDERSTAND they may not want help and wont be offended if they just say ‘bugger off’. If more people took that line it would be so much easier for us. I’ve experienced people trying to open a door to take Mum through in her chair and they make such a b*lls up of it by then standing in the opening and blocking it even more! Lack of thought about what they are doing is overtaken by an over-willingness to be helpful.

Talking about the situation with Mum is probably your best bet. You will need to pick the time when you are both calm and “relaxed” (yeah I know that probably wont be often) and wont be interrupted so the conversation has no time constraints. Let her know how you feel and ask how she feels about some situations and what she would like you to do to help and what she wants to (at least) try to continue doing for herself.

Best of fortune to you.

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hi my partner has PD too and i am his carer, i know that he finds it so frustrating not to be able to help arroud the home and to only accept help from me and others. if you have ever read the LPA document (lasting power of attorney) one of the things it says is that you should help the person to remain as independent as possible.
its a tough path t o tread to find the right balance for you and your Mum and as time progresses your needs and the balance will change.
i think also that you should share your needs with your Mum maybe she can hslp to support you in some way which may helpher to feel her worth.
Caring is not easy it is lonely and difficult and it hurts. i agree contact social services and see what there is available that interests you good luck