Struggling to Cope

Hi. I am full time carer for mum and dad. My husband and I gave up our house and I took reduced pension early retirement and we moved in to look after them. I am 53 and husband is 55. My dad suffered a major stroke two years ago which left him unable to speak and paralysed right side. Mum was diagnosed early onset dementia in 2017. Over the past few months mum has been more and more verbally abusive and aggressive and currently we dont have carers for dad due to Covid so we are doing everything. We have one bedroom/everything room for us as mum states this is her house and we must not forget that. She also said she was going to take me to court but not sure what for. She tells my dad that we dont like her which upsets him. I do cooking, cleaning, shopping, washing, ironing for everyone and my husband is a great support but we dont feel we have a life anymore and are desperate. I feel very very low and dont know how to bounce back. I am on antidepressants and have been for some time but not doing much. I realise there are many people much more worse off but I dont know who to turn to or what to do.

Mum has dementia. Try to ignore what she says when she is horrible. How old is she?

Hi Kathryn

It sounds like you’ve got a lot on your plate right now and caring at this time is bringing added stress for many carers - less opportunities for breaks and less support is making things more difficult, it’s understandable that you’re feeling low about your situation. You’re not alone in it though, there is lots of help and support here.
Have a look through our help and information pages and make sure you’re getting all the help you’re entitled to, read through about how to look after your own well being too which is especially important now. :

There is also a dementia-specific area of the forum which you may find useful:

We are also hosting a series of ‘care for a cuppa’ webinars where we come together (online) to share information and and a general chit chat. Information about the next one will be put on the forum shortly, do join us if you can.

Best wishes

Dementia is a brain dis ease. It’s not at ease and it’s always the carers who get the misery of it. Firstly, it can only get worse. Once you get that you can go forwards. She will call the police and report you for all kind of things, beware. Treat that as a joke whilst you’re in abject misery over it. You will have to learn the most valuable lesson that I didn’t!!! You are First, then your husband, then the parents or whoever it is that you are caring for. It can go on for a very long time. You naturally want the best for them because of who they are. I was told by a consultant that dementia brings out their true personality, don’t know if that helps or not. You must look into the future and find a path that leads you to your own life without them in it. Again, a very strange thing for a carer to do, when it’s the parents it’s excruciating, it really is. Do you know why I came to carers UK today? It’s because I’m suicidal looking after husband now, it’s been Mother, father in law, Father and for twenty years the husband. Where has my life gone??? Would they have been given help without me being there?? Of course, but, I felt duty, duty, and more duty until every bit of kindness has drained out of me. I just want to be on my own with a dog and no one else pulling my strings every minute of every day. Please do not let yourself get like me and all the other long term carers. Phil Collins. I just don’t care anymore. Great song about letting go. I know you have a million valid reasons for staying in the same situation, at the bottom of it is thinking you know best, wrong. Guilt, wrong. You only get one chance at life, then kaput. If I could go backwards in time I would have walked away and feel a lot happier than I do now in my 60s, not 50s like you. And, I would not feel guilty. You can never get it right no matter what you do for them. Never. You could start by taking charge of the house, she needs you 2 more than you need them. And you 2 both need a well deserved break, after Covid of course. With love to you. Made me feel better anyway. Guilt, guilt and more guilt. That’s all caring is. A huge snake swallowing up your one and only life. xxxxx

I have had a total of 10 carees, over 40 years. I so recognise the sentiments you are expressing.
I too was on the verge of a breakdown. In less than 2 years I’d had major surgery for cancer, found my husband dead in bed, and 3 months later was nearly killed in a car accident, saved because by sheer fluke I was driving my husband’s Range Rover not my Escort. The police told me the RR saved my life, but I was left crippled and with a walking stick for years, supporting a demanding housebound mum 6 miles away and a brain damaged son 15 miles away with endless issues with his care agency. All this whilst I was running a home, a national club, and writing a magazine every 3 months. We all have our breaking point, and I was on the edge of mine!
Counselling for me was life changing, at last I could dump all the guilt, made to realise that I had NOTHING to feel guilty for, it wasn’t my fault the others had health issues, and I couldn’t do everything for everyone. In fact the one person I was neglecting was ME!
I learned how to say no without using the word itself, to side step requests, put them off, but most of all do things for me.

You have done enough. When did you last have a proper 2 week holiday, on your own, to rest your weary mind and body?
When was your Carers Assessment last updated by Social Services?

Bowling bun. Thank you for posting. You have been even drafter than me and I did not think that possible😊 if more people told the truth about being a carer then less would do it and the governments would have gave to supply proper care for all. Cannot see how women in particular will give up their life to be an unpaid carer in the future. No salary, therefore no money, even less self esteem, no pension pot. It’s appalling that we got a £1 rise in carers allowance in 2020, less than 40p an hour!! Just shows what they think of us. Not heard one mention of all the poor carers trapped by Covid 19 on the news. We may as well be invisible. Forgot, we are. But, thanks again.

I’m very sad reading your post. I’ve had my share of heartbreak. Nothing in comparison to you and Bowlingbun.
My lovely husband had strokes, then diagnosed with vascular dementia. Eventually a problem with his bowel. He died last year. With hubby who was my soul mate, the dementia and the strokes, altered his personality. He became aggressive at times, and the language was very dark! Only if, staff didn’t explain, every step of the way, what they were doing, especially personal care. He never used language to females, until he became ill. When in hospital , he called the police, saying he was being kept prisoner. The police tracked his mobile, and were knocking my door, early hours. Fortunately,they were understanding, and kind to me, but
it was hell, explaining. He used to accuse me of all sorts. Nearly had a breakdown because of it. In his dementia world he confabulatated loads. So, while I am not disagreeing that dementia brings out true personality, it doesn’t with everyone, but can change it. Especially if the front lobe is affected.
I do hope you can find a way to have some time just for yourself, very much deserved, and your absolute right!

Hello, Kathryn. As others have said, when people have dementia they sometimes say things that you should not take too seriously. Another point frequently made in this Forum, is that they mentally revert to an earlier period of their lives. Their memories are stronger of these earlier periods, and they sometimes confuse the past with present time.

You and your husband have effectively moved from a house of your own to what is effectively a bed-sitter with shared facilities. You deserve better than that in view of the sacrifices you are already making in looking after your parents.

How big is your parents’ house? Do they own it or rent it? Did you own or rent the house you gave up? Do you have power of attorney? These points are all relevant if your parents go into care, which seems likely in the not too distant future.

It sounds as though Mum is treating you as she possibly did when you were a teenager. Her word was law in the household. You may have had siblings to consider and share the living accommodation. If you did not like it, you looked forward to the days when you could “fly the nest”. When you eventually did. as most children do, it was in everyone’s best interests.

So if you now meekly ask her for extra living space she will give the same response as she would have when you were in your teens.

Let us suppose you were to take the bull by the horns and reorganise the living arrangements to give yourself more space, without asking her permission.

What would happen?

Would Mum fly into a rage and order you to put things back as they were?

Or would she not even notice?

Almost anything between these two extremes seems possible. One thing that would not happen would be for your Mum to take you to court. Could a person with dementia bring a case that would stand up in court?

I know most of us abide with popular, life-long principles of moral conduct, but in your situation you must allow for discretion, especially when you deal with the “mum’s house; mum rules” principle. You must recognise the things not to take too seriously. It is a case of what is reasonable.

You deserve better living arrangements than this. Mum has stated her terms; in view of the support your are providing, I would say that you have a moral right to express your terms, by word or deed. You could at least arrange some gradual adjustments of the living accommodation.

If you and Mum cannot agree, then perhaps you should revert to a home of your own, at a strategic distance from Mum and Dad. Then you could chill out when necessary. And when your parents do need to go into care, you would be less likely to be involved in “you live here so you can care” arguments with social services.