Tired of Caring

All about caring
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Hi everyone,

I was told to start a new thread which is a follow up of this one. I was told it was too long: My Caring Dilemma

I’m in my 40’s now. I still work part time (not sure how much longer for), suffer from long covid, hardly ever sleep and have OCD.

I care for my Mum (not paid). She is in her 70’s, has limited mobility, arthritis which has ravaged her hands and wrists, diabetes, can only see from one eye and is incontinent. She struggles to accept she is not what she once was. I go to the office for work once a week or once a fortnight but every other day, I have to be at home to help her. She had a few falls in 2023 but has not had any this year. I’ve stepped up the looking after her and will hold on to her when she is walking.

I indirectly (they are just reaping the benefits of living in the same house as Mum and I) care for:

Sister - I think she is in her 50’s. I suspect she has selective autism but it has never been diagnosed. When it comes to house work, it rears it’s ugly head but she can socialise, go shopping, loves a good gossip, be a nosey neighbour etc all fine. Tell her to do something simple and she will do it wrong. I don’t think she is that ill but I could be wrong.

Sibling (they are a woman trapped inside a man’s body so I don’t know if they are he or she) - he/she can do everything but is bone idle, refuses to do any housework or help with caring for Mum. He/she is very abusive to Mum - always shouts at her and belittles her. He/she won’t let Mum spend money and when he/she goes shopping, he/she will buy the cheapest option, e.g. Mum likes eating mini rolls after her dinner at night. He/she refuses to buy Cadbury/any other posh brand and will buy the nasty supermarket version. We are not loaded but we are also not poor. If I tell he/she off, he/she will then shout at Mum when I am not there.

Brother - he has to use coloplast catheters to urinate and has done for about 8 years. He constantly gets infections, gets frustrated and lashes out at everyone. He has various other health issues. He is particularly vicious to Mum and sister. Some of the things he comes out with are horrendous. Mum is also scared of him and refuses to phone the Police or kick him out.

I do 95% of the cooking, 100% of the cleaning and about 80% of the caring, brother does about 15% and sister does about 5%. He/she does nothing, just acts like a small girl despite being a grown man. There are other siblings who have married and moved out but they are only interested in their share of the will and will not help out.

We have really noisy neighbours who will bang doors day in day out, all day and night. Just had a power slam now and it’s 23:12 at night. They are awful people who you cannot reason with. Their response to everything - if you don’t like it, move out. I reported it to the Council but they said slamming doors all day and night is normal household noise. I’ve begged and pleaded with Mum to move from here but she refuses. She thinks someone called Allah is going to help us! We can’t really move as we just had a downstairs bathroom fitted a few months ago. I could be wrong but I think the loud slams, especially at night, might be one of the reasons Mum has become incontinent.

I post on here because there are some lovely people (BB, Melly, the man who looks after his husband and many more) who have given me a lot of support and advice over the years. I find it hard to access support face to face because I get really embarrassed and there are not many people you can strike a conversation about incontinence up with.

At the moment, I’m particularly struggling with getting Mum to let me change her nappies daily. Initially, she would not wear them and then she would only let me change it once a week. We are down to every two days but it ideally needs to be daily. I think she keeps them on at night and once they are semi filled, it swishes about and soaks her bedding. I’ve bought numerous mattress protectors and those Kylie things but she is soaking the bedding every other day. Brother sometimes checks her bedding but shouts at her when she has had an accident. I normally have to take it all to the launderette which is a chore in itself but needs must etc. Any suggestions on how I can encourage her to do this? She doesn’t use pads, it’s nappies. I buy the Tesco spirit ones.

We had an appointment at the incontinence clinic but they just discharged Mum and said it did not meet any of the thresholds for help. I’m not bothered for financial help but some support and advice from a specialist would have been good. The arthritis clinic also discharged her and said she is fine - she can’t walk or use her hands!

I’m not posting on here for sympathy. I indirectly chose to care for Mum so will continue to do it for as long as I can. A lot like other people, it just happened. Prior to being diagnosed with long covid, it was sort of easy to do but I have become quite weak over the last three years so struggle quite a lot. It would be heavenly if the other siblings would jump in and help out a bit (and not shout at her) but I have accepted they don’t care about Mum and can only see £££.

In an ideal world, Mum would be fit and healthy but that’s not going to happen. Failing that, I would love it if she would move into a two bedroomed detached bungalow with me. I would get a job working from home so it was just me and her. If I had to go out, I would ask for a carer or someone to come and sit with her.

Thanks for listening to me.

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Thanks, OnTheVerge, for following my suggestion and starting a new thread. You have summarised things very well. In particular, you have summed up your siblings. We now have a clearer view of your situation.

In your previous thread you made the following statement:

It is good to have ideas for the future, but don’t presume that things will just fall into place when the time comes. You need to build a strategy into your life.

I can understand your wish to distance yourselves from your siblings. There are two points to consider:

  • The price of accommodation, rented or owned
  • Your income from employment

So where is as far as possible from Yorkshire? Cornwall?

Cornwall is suffering gross inflation of property prices, owing to people from wealthy areas, like London, moving there or purchasing second homes. It has reached the point where young locals are forced to move up country to find the combination of affordable housing and ready employment. Forget Cornwall.

In fact anywhere towards the south of England is going to be significantly more expensive than Yorkshire, though job prospects are better.

I recall you did try for a place of your own near your present home so that you could enjoy some respite and solitude - but you were unable to afford anything worth having.

I don’t know which part of Yorkshire you live in, but you could find cheaper properties by moving a little way north or west, e.g. Teesside, Durham, Tyneside, Lancashire. However you would require a new job and these are not the best areas for job hunting.

You do not need to choose a new location just yet. However it would be a good idea to enhance your present employment status. You work part-time; see if you can negotiate to work extra hours, thus increasing your income and savings - and also get away from your disfunctional family more often. Does your present employment have offices elsewhere in the country, to which you could move? If not, you will rely on your income and goodwill from your present company, from which you would seek a reference, in your search for new employment.

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@Denis_1610 thanks for your reply and sorry I have not had chance to reply sooner.

If I had it my way, I would move to the Channel Islands, have a brain transplant so I could forget about the useless siblings and start a new life, once Mum has departed that is.

Thanks for the information about accommodation. I work for the local authority in Homelessness so all bases are covered. I won’t be thinking years and years in advance but it will be a year at a time. I have enough to cover my rent for a few years, possibly even get a mortgage depending on where I end up.

I don’t like work, I have a bullying manager who makes my life very hard so I would rather quit than ask for more hours. As with most organisations, work are reducing the amount of people in each team and doubling the workload and I don’t see myself in that job for much longer.

Thankfully, I have never had a life and all the money I have earnt has been saved so I have a fair amount to look forward to. My outgoings are grocery shopping, bills, things for Mum and my yearly splurge where I will spend about £2000 on new clothes and things which I never wear.

Family life is still the same. Dopey sister supposedly now has cancer (sorry, I am not interested). He/she is still he/she and will go parading round the country leaping into bed with old men and running around after them, and still won’t do anything at home. Shouty is still shouty although he has tamed a bit. The other two are still non existent and I am still running around doing 90% of everything.

Oh the joys of being me! I hope you are all keeping well.

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Hello, again, OnTheVerge. You spend £2 000 each year on clothes, which you never wear. In other words, these clothes are just clutter, and will be excess baggage when the time eventually comes for you to move.

Why not instead spend much less than £2 000 on a short holiday and give yourself a well-deserved break? Something like a three-day coach trip to Blackpool, for instance.

That is a rhetorical question, because I know your answer. You are going to say that your folk could not manage on their own.

OK, then, imagine this scenario. Because of an accident or illness, you suddenly need to go into hospital for a week or more. How would your folk cope then? One thing for sure - in hospital you would be very worried about your mother.

It is a choice between hoping that you can keep going, in spite of your present health problems, or taking firm action to build in a contingency. If your folk were forced to cope without you for a few days they might be better inclined to find a way of living that relies less on you - so if you were to be suddely indisposed they would have a ready plan to cope.

As long as you are prepared to run around after them, they will let you do so. You are not really doing them a favour because if you should suddenly become unavailable they would be up proverbial creek without a paddle.

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Maybe some “self care” relating to your wardrobe situation?
I didn’t used to spend much on clothes, then when I was finally in a position to go on a lovely holiday I ended up buying things on ebay!
10 years later I have a very organised wardrobe which is like a Capsule Wardrobe, only bigger.
I never need to worry about what to wear, it’s all there ready and waiting.

I started by working out my best colour season, simply by working through a Color Me Beautiful Book I bought in Oxfam for £2.
Then I bought swatches of these colours on ebay, for about £10, and decided that nothing new would be added that wasn’t one of “my” colours.
As I don’t work any more, and don’t need to wear formal black or navy. I bought some stretch denime in a deep jade green/blue and when I took out all my blouses and dresses realised that this was already my main colour! Virtually everything coloured in my wardrobe included this.
Everything I bought from then on included this somewhere. All my tops are now patterned, with variations of this colour. I call them “sea” colours. However much I like other colours, they won’t come home with me.
I then bought lots of “flocked” very thin hangars, very strong and very cheap on ebay. All dresses together, blouses, trousers etc.
I added a second rail, blouses on top, bottoms underneath. The tops are arranged by sleeve length. All gradually sorted on rainy days or evenings, putting things on the bed and rehanging them. Try doing this gradually, and you will find that you already have everything you need!! It’s really good for your mental health and self esteem investing in some “me” time. In total my book and hangars cost under £20!

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@bowlingbun goodness me, how organised BB! The inside of my wardrobe looks like an explosion in a paint factory! Like you, things were so much easier when I worked, I had my “school uniform” suits, of black, grey and navy. But now it’s every man (or jeans, or sweatshirt) for himself :laughing::laughing:

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It started in earnest after my first holiday to Crete, when mum had just moved into residential care. I spent most of the first week sleeping a lot. I’d put on a lot of weight and my favourite things didn’t fit!
It really is lovely opening my wardrobe door and seeing it so neat and tidy.
They say we wear 10% of our clothes 90% of the time. Certainly true in my case.
Putting away things I hadn’t worn for ages, and getting rid of things I wouldn’t wear again, was not easy, but the space left meant more room for things to hang properly.
I also,put away all my light Greece holiday clothes in packing cubes, in my underbed drawers, again making more space.

At home my “uniform” is a pair of dark trousers, a patterned Lands End polo shirt, and a zip sweatshirt jacket or similar. The polo shirts are subdivided by sleeve length, either sleeveless, short sleeve, three quarter, or long sleeve, sorted by collar colour!!

Too often worn out carers running around others all the time are told to do more exercise etc, but what I really need was being in complete control of something in my rather chaotic home. (Shared with 2 sons, and a nearly teenage son, 2 very large steam engines and lots of other machinery!).

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Hey @Denis_1610 - sorry for the late reply. For clarity, I look after Mum, the other 3 dingbats are just piggy backing off the help. If the 3 dingbats were to drop dead tomorrow, I would have a huge party. I hate them. They are evil. They rarely help out and it’s dropped on me because no one else will bother.

I used to do day trips and stop in fancy hotels but those days are in the past. I tried once in June last year. I was so shattered and it was not fun. I can’t remember if I mentioned I have Long Covid and have had it for a few years. I don’t have that good mobility, I have aching joints, my gums hurt, my teeth are falling out, I hardly sleep, do I need to go on? GP’s are useless. They give no help or support and as soon as LC is mentioned, they say it will get better. It’s universal for all LC sufferers, I’m part of a support group.

I’ve been feeling quite down recently, and don’t laugh, one night I wet myself in bed. Like Mum, like son! Haha.

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You’re carrying way too much, and your siblings should be helping. For your mom’s incontinence, maybe framing it as comfort and hygiene rather than control could help. Setting a routine or having a nurse explain why regular changes matter might make a difference.

If your brother and sibling are making things worse, can you push them to move out or at least set some boundaries? A family meeting might make it clear they can’t just sit back while you do everything

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Thanks Dean but the nurses don’t care. Took my Mum to the GP after being persuaded by Bowlingbun on here re: her incontinence and the GP was so rude. She actually said “what do you want me to do about it?”. It upset Mum and it upset me too.

I think it’s a bit taboo me talking to her about it. I’m sure she finds it really embarrassing. I have two useless older sisters but they actually don’t give a hoot.

It’s not my house so I can’t make them move out not that they would pay any attention to me as I am the youngest. To me they are all dead weight. Like I said above, if they all dropped dead tomorrow, I would celebrate.

In an ideal world, it would just be Mum and me. I would make her move away from here and no one would be able to back her up. Life would be so good if it was like that but hey, life’s a bi$ch!

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Hi @ontheverge
I’m so sorry for all your going through it’s so hard to know what to suggest. One thing did occur to me though but I don’t know if it applies, do you have power of attorney yet, I count myself lucky that as an only child I will always be the person to make all the decisions regarding health and finance and won’t have others to argue/negotiate with. If your mum is still mentally capable I would get it set up as soon as possible as your siblings seem like they will just cause more trouble as time passes and things get worse. I know you can have equal attorneys but there is also one where you are the sole attorney, could be useful especially if they are trying to get hands on her money or stop you doing things that you know are in your mums interest.

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Hello, and thanks for replying. The transgender/gay one is power of attorney - he/she deals with all the finances. Money has gone missing in the past and I think it’s obvious it was he/she because no one else has access to it. I don’t get involved. I’m not bothered for the money at all. I’m just there to try and make life as easy as possible for Mum.

Had a blood test this week and got urgently called in the day after. I am now blessed with diabetes on top of everything else. The tablets are making me so tired. It’s out with all the junk food which was my only solace. I’ve not told Mum because I don’t want her to worry. I just lied and said it was about my vitamin D (which I am also quite low on so not a proper lie).

I’ve to go for blood tests every two weeks, an ultra scan for a fatty live, and nurse appointments every month. Any ideas on excuses to get away from home without Mum cottoning on? I might just take all of March off as leave from work and just say I am going to work when I have the appointments?

I know diabetes on its own is not the end of the world, but with the long covid and the caring, it’s just too much.

Still no support from any of the useless siblings. I briefly mentioned carers to Mum and that set off the tears. Boohoo!

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@ontheverge I’m sorry to hear about your diabetes diagnosis on top of everything else.

@bowlingbun was recently diagnosed too. @susieq , @Charlesh47 also have it. Not sure if @Chris_22081 does too? You are in good company.

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Yeah I am Type 2 as well.

Had Hb1ac test last week and its come back lower than last year - WOO WOO !!! In two years it’s dropped more than ten points. What have I done - other than start taking Metformin? Well TRIED to eat a bit healthier but I still snack on sweets and naughty things - just feel a bit guilty afterwards. I was expecting it to go up cos of bad habits while G was in hospital - snacks, junk food, takeaways etc etc - and a few binges of sweets when I felt low (a lot of the time), so I am pleasantly surprised. I that can happen when I am in a bad place - what can I do if I focus?

It isnt the end f the world and if a diabetes nurse starts to nag you then challenge him/her. I did and complained and other staff joke with me now about her - funny that THEY all know what she’s like!

OK it is important cos G’s diabetes is out of control and that’s cause vision issues and other problems but what does he do? Live on green veg and nothing else? No he has to be able to enjoy like still. We all need to be able to do that - its a question of treats in moderation… I keep promising to find the definition of that word - one day!

Dont get down over it all. :people_hugging:

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I’m a newly diagnosed Type 2, my levels have soared in the last 18 months and I couldn’t understand why? I thought I was eating a reasonable diet but my struggles with Hampshire over M’s care meant consolation with cake or biscuits at times. In effect I was punishing myself for having a disabled son.
Having realised this, In the last year or so I’ve stopped doing this and I’m now the lightest I’ve been in 15 years. (I keep a diary including my weight). Almost 3 stone lighter now.
I’m on Metformin and feel better than I have for a while, but a lot of information is contradictory.
Then I looked up the causes of diabetes. The one that leapt out at me was STRESS.
I know that about 25% of those on hospital waiting lists are carers.
Has any research been done on the links between long term caring and diabetes?

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Definitely one link is STRESS because of the effects that has on the body generally and just think what happens when any of us get stressed - we don’t look after ourselves properly, don’t eat properly/healthily, don’t sleep… ALL things which we are told are important in controlling diabetes!

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Enjoyed reading your wardrobe story! Have been a Colour Me Beautiful devotee for years, that plus a capsule wardrobe. Both work well for not overwhelming yourself with choices which is perfect for a carer - when you have no time and emergencies happen, you can just ‘dress and go’!

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