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My Caring Dilemma - Carers UK Forum

My Caring Dilemma

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153 posts
Hi all,

I'm a 37 year old male from Yorkshire who just wanted to post on here and let it all out because sometimes it gets too much for me. I've been feeling really down for a long time now. I did post on here not too long ago but then never managed to follow it up as life and caring got in the way.

I've spent days and days reading through the various threads and topics with tears running down my face because I know how some of the posters feel. I know how it takes over your life and how lonely you end up getting because you end up forsaking your own life.

I "care" for my Mum who is in her late 60's - she has diabetes and osteoarthritis. I also help with 2 siblings: 1 is in her 40's and I believe she has learning difficulties (they've never been diagnosed by the GP though) and 1 is 40 but has long term nerve damage. He can't urinate normally and has to put catheters in to empty his bladder. He had an operation done to put a nerve simulator inside him but it didn't work and now he suffers from intense pain in the leg they put it into. He also suffers from manic depression and can easily be set off which leads to a huge bout of unhappiness, vomiting and various other things. I know he must be in a lot of pain but when he is on one of his downers, the whole room is filled with a negative aura and it ends up getting everyone down.

I work part time and the rest of the time is either spent going to appointments with Mum, cleaning and cooking or just keeping her company. I don't really have much of a life. Once I get home from work, Mum wants me to stop in and keep her company even when others are at home. I think she gets very lonely. Her husband died 10 years ago after being diagnosed with cancer. He was very controlling and more or less ordered her round like his own personal slave all their married life. So after he dropped dead, she has no one to boss her around or tell her what she can or can't do. Towards the end of his illness and before his death, he became a complete "diva". I know one mustn't speak ill about the dead but he had us running around after him like mad people. He would demand food when he was told he could no longer eat and then vomit it all out which would then have to be cleaned up before he demanded another dish, which would then get vomited out, had to be cleaned etc etc. The abuse that came out of his mouth in the last 12 months was awful. I will never know how much pain he was in and how bad it got for him, but some of the things he would say just made us wince. I remember him saying once that he would be better off left to die out in the street because we had done nothing for him - that's after like 5 years of weekly appointments, cooking, cleaning, doing everything for him, running here there and everywhere, catering to his every whim and fancy.

Anyway, Mum's health has deteriorated over the last 10 years. She has lost a lot of weight and her arthritis has gotten worse too. Not too long ago, she was placed on methatrexate which I believe is a chemo drug. Since then, she's lost even more weight and is now about 6 stones - most of her teeth have dropped out so she struggles to eat which makes me worry even more about her. I try to make soft food and soups for her but she doesn't always like it. I sometimes cut up food for her into small pieces but this is not always possible. The others are too engrossed in their own woes to help out. Mum is almost always tired too, constantly nodding off until the ***** next door slam a door and she jolts out of her daze. I wonder if she gets any sleep at night? I know she worries about her kids mainly the 2 I have mentioned, especially my brother who can't urinate on his own.

I've been in a "caring" role for close to 15 years, 10 years with Mum and about 5 years with her husband. By "carer" and "caring" I mean I help out and do most of the daily living things (cook, clean, appointments, financial stuff) but I don't claim anything for it nor would I want to. I'm not posting this because I want help with money or finance. I'm posting because I feel so lonely. I don't have a life other than work and that is stressful as any job can be working with young people who are homeless. I also wanted a release. I have a lot of friends and acquaintances but they just don't seem to understand how it takes over your life. Some think I am exaggerating or being dramatic but then how would they know as none of them are still at home with parents and do not have caring responsibilities. I never make plans with any of them because Mum might want me to stay in and then it's just too much hard work so I just don't bother. It's her house I guess so I have to follow her rules.

As much as I love Mum, and I love her a LOT, she has also become quite controlling. After work, she gets upset if I go out in case she needs me and it's only once a month or once every 2 months that I am "allowed" to stay out. I normally book into a hotel and just sit there and cry but those 24 hours don't last long and it's back to running around after everyone at home. I'm not a caged up beast, she does "let me" go out to the gym once or twice during my non working days but she makes me feel bad for leaving her on her own - she's not on her own because the other 2 are still there but I don't think she can have a genuine conversation with them. Normally, I just end up crying in the shower at the gym - forget workouts, I just head straight to the shower and cry.

I used to be so full of life and confident and full of energy. Now I just feel miserable and despondent - my speech impediment has also come back! I have to put on the fake smile for work but it's fake. I feel so tired normally. I've not slept properly in forever. On top of all of that, we have awful neighbours who slam doors day and night continuously. Unfortunately, the council won't get involved because Mum's house is owned and so is the awful people next door and apparently it's fine to slam doors all day and night as per the environmental health team (I work in housing and they only get involved here if both properties are council owned). The Police won't do anything either. I've talked about moving with Mum but she is adamant she will not be forced to move from here and would rather just suffer. We've had the discussion about moving numerous times over the years and I now just cannot be bothered bringing it up again. We end up falling out and then she just ignores me for weeks on end so it is really awkward.

Does anyone else sometimes feel the need for a hug or someone to just put a hand on their shoulder and tell them it's OK? I feel so lonely at times with all kinds of thoughts careering through my head at night when I can't sleep and I normally get out of bed with that awful knot in my stomach which is followed by a run of loo runs. I also hate the same old same old my life has become. I so want out but just don't see any way unless Mum passes. I feel horrible for thinking it but sometimes I wish I could just break free and run off into the sunset and never come back. There is so much I want to do with my life, like travel, have a girlfriend, go exploring etc. Life is such a chore at the moment. At times, I just wish I would not wake up!

I've accepted she will not move from here and I have also accepted I will be in this "caring" roll unless I drop dead or Mum passes. However, I just wanted to get it all off my chest and thanks so much to anyone who has read this all. Oh my, it looks a thesis I wrote. Apologies.
Welcome back OTV,

you aren't alone in how you feel.

Your Mum wants you to stay with her every evening, but she doesn't need this. You need to look after you too, your wellbeing is as important as everyone elses.

What did you used to enjoy doing in your spare time?

Melly1
Three carees and work is simply too much.

On top of that you have all been emotionally abused for a long time. From what you have written about your dad, he was not the father he should have been, and you have all been to hell and back as a result.

It sounds like you have become the family slave, becoming a substitute "mum" to your siblings, or is no one capable of making good decisions because of the legacy of dad's behaviour?
Everyone expects you to do things for them, and it's time they all started to take responsibility for themselves.

I'm assuming you all live in the same house? Does mum own, or rent it?

The answer to this is desperately important. If mum rents it from the council, you probably don't have any right to stay there after she dies or moves into residential care. You, your brother and your sister will be made homeless by the council!
DO NOT IGNORE THIS WARNING.

You know you need to take control and sort this out, but everyone is used to you doing it all for them, and I'm wondering if you were always conditioned to help mum and do everything she couldn't.

It took counselling for me at 60 to realise that was what had happened to me! It's not going to be an easy job, but it can be done.
Counselling turned things round for me when I was on the edge of a breakdown, trying to please everyone else all of the time so never had any "me" time at all.

I don't think I've ever said this before, but I think all your family members need counselling, to get over dad's behaviour, and sort themselves out individually.
Ask your GP what counselling is available locally.
Hi

I agree with BB 3 carees is way too many.

I have 2 and at times it feels too much, balancing their needs with mine.

Have any of of your carees had a needs assessments from social services?

It is concerning that you are not able to enjoy the brief times you get to go to the gym and you are in tears. That is definitely suggesting you are overwhelmed. Which anyone would be with a job as well on top of everything else .

If it was me, I would be thinking about the other options for your mum. Like sheltered housing. She sounds lonely. My mum was in one which was lovely. Her own flat and company when she wanted

You may get more of the life YOU want then.

I would suggest going to your GP as well.
Please talk to your GP about how you are feeling, you need help and support. I am thinking of you and hope things get better for you. There is also Signpost who support carers and they may be able to help you.
Best wishes and stay strong as you sound like a really good person.
Martin
Hello and welcome!

3 carees is too much. I only care for one family member and even then I find it hard at times. He is not the reason why I am frustrated most of the time however. No that is a post and story for another time.
What are your interests? If you love sewing, I recommend trying to find a good sewing club that is fairly local to you. Do you enjoy making art or not? Talk with your GP as well. You need a break pronto from caring. When was the last time when you had time to yourself? Find some more opportunities to just chill out. Even if it only is some time spent out in the fresh air on a community allotment, planting things or walking that still counts.

What about supported living? Explore all possible supported living options. Here is some more information on supported housing schemes in Britain for you to look at. https://england.shelter.org.uk/housing_ ... ng_support
Hi Melly1, thanks for replying.

Mum really struggles with basic things like opening and closing doors due to her osteoarthritis. Poor woman can’t even go from the front room to the kitchen without struggling with the doors. I know she somehow manages but to see a fully independent woman become what she is now breaks my heart. For some unknown reason, I feel guilty for this. Don’t ask me why but I do. Does anyone else feel this way about someone they care for?

I can’t remember what I enjoyed doing in my spare time. I’ve not had any for such a long time. Like when I said I go to the gym, it’s almost on borrowed time and the time starts ticking down as soon as I am out of the house. I like walking and would love to travel but it’s just not going to happen in the near future unless something drastically changes.


Hi bowlingbun, thanks for replying.

Yes, we all live in the same house which was owned by Dad. I’m not sure whose name it is in now! I guess it would go into Mum's name but we never had it changed.

I don’t know if I have become the slave or let myself become the slave. The 2 siblings at home don’t work and could help out with a few bits and pieces but they don’t. My brother does help and do some of the cooking once in a while so that is always helpful but it’s not often. It’s dependent on his mood and how he feels. When his depression gets really bad, he just sits in a corner with his head down and pukes up a lot. I’ve noticed this happening more and more lately. My sister will only do very basic stuff. Again, I am not sure if this is to with her learning disability (it's never been diagnosed but there are things she does and says which make me think something is not quite right - she has to put both feet on the same step when going up or down and various other things, or she simply can’t be bothered. I mean why would anyone want to lift a finger when someone is going to do everything for them? I’ve had numerous chats with them asking them for a bit of help but it always falls on deaf ears. I’ve even tried doing a rota but that’s not led to any changes. My sister can’t cook and that’s fine but if she helped with a bit of tidying up or even a bit cleaning, it would be a big help. I think after asking for help for so long, you eventually just lose interest in asking for it and just do it all yourself.

I work in Housing so I know how awful it can be when parents die and the property cannot be passed onto a child. Thankfully we are not in a Council property. Mum does regularly tell us to think about getting a house so there are no issues in the long run. I’ve always been good with my money and could put down a large deposit on a house so I tend not to worry about that. It’s not like I go on holidays or anything so my earned money is just saved up – obviously I buy food and groceries and I pay for all the DIY to the house. I don’t have to pay any board though and I think Mum thinks she is doing me favour by doing this but she isn’t.

“I'm wondering if you were always conditioned to help mum and do everything she couldn't” – you’ve put it very eloquently. That is exactly how I feel. I remember being the “second Mum” from age 13 when I realised how much my Mum was struggling. I learnt to cook and clean then and have done it since. Sometimes I feel like that is my worth but when I compare my life to other friends, I just want to move out. There are other siblings who have moved out but they have no need for us and don’t even bother visiting. My oldest sister has not been to our house for close to 10 years. Her kids are grown up so she does not need us to babysit. Even if she came and kept Mum company for a few hours it would help but she won’t and doesn’t. Again, it was like trying to get blood from a stone. We’ve asked numerous time for a bit of help but she just can’t be bothered. If she came to sit with Mum for an hour every few days that would lighten the load but she simply just doesn't care.

Can you tell me how I would request counselling? I’ve tried going to the GP with a list of things I want to discuss but always bottle it at the last minute and make up a non-existent rash or some such. It’s so hard asking for help and I almost always feel embarrassed. Is there anything in particular I need to say? I know if someone wants Council accommodation, they would need to use certain buzzwords, are there any for counselling? I just feel so awkward because if I let my guard down and open up, I will just be in a flurry of tears. I opened up to a friend in real life (not online) a few months ago and I just cried and cried and cried. I wasn't able to get any words out. That friend has sort of avoided me since so I always feel bad for telling people how I really feel.

Right, it’s almost time to go home so it’s back to cleaning and cooking and keeping Mum company. Wish me luck. I'm so tired!

Thanks again for reading my thesis and the replies. It means so much to me. If only one of you could put a hand on my shoulder and tell me it's going to be OK. I so need that. Sorry if I sound ridiculous.
Ask your GP about counselling. They should ideally refer you. Failing that you can refer yourself.
Hi OTV,

Has your Mum had a recent occupational therapy assessment? They can assess her needs and provide all sorts of gadgets and equipment to make her life easier.

Does she see a consultant? She may be a candidate for replacement surgery.

It's also very important to keep moving with osteoarthritis and not to stay in any position for too long.

Yes, it is hard to see someone you love in pain, however, you shouldn't feel guilty. Mrs Average (forum member) used to advice members to replace the word, "guilty" for "sad" - it's sad that your mum is in pain and struggling - but not your fault.

Looking after yourself IS important, its easier to care when we are rested, we are more resilient.

Melly1
Dear ontheaversge,

I am old enough to be your mum and feel so very sorry for you and the position you're in.

PLEASE , PLEASE go and see your GP and let him know how depressed you feel. In my humble opinion you do sound to be on the edge of a nervous break down and if you become more poorly you won't be in a position to care for anyone!!

You say you work in the housing department. And I'm sure that if you ask the Human Resources department for a confidential meeting and tell them your predicament they will be able to offer you advice/counselling ...Could you not approach your line manager and explain the position you are in?

I know it's easy for me to suggest these things but it's you who has to grab the bull by the horns so to speak and actually do something before you crack up!!

Another suggestion is that you actually book a weeks holiday ..tell your Mum and your siblings who live at home and the other siblings who don't that you are going and just GO!!! Again easier said than done I know. It will be hard but you need to do somethinf drastic for your own mental healrh well being.

Also take the advice of others who have responded to your post, especially bowlingbun.

We are all here to listen and support you in the best way we can.

Stay strong. Things will come right in the end I am sure. And I know that your mum, in her heart of hearts, wouldn't want you to make yourself ill in caring for her.

Sending you the biggest virtual ((hug)) ever from a Yorkshire mum!!

Joan xx
153 posts