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Just want a rant - Carers UK Forum

Just want a rant

For issues specific to caring for someone with dementia.
Hi all

I don't post here very often at all but today I just need to. I know all of you that care for a loved one with dementia will know how I feel but I just need to let it out with those who know and can sympathise with me.

I care for my mum who has severe dementia. Everything has been ok but recently she has been being really nasty to my husband. She literally spits venom at him every time she sees him and it's now really affecting my health. My anxiety has got really bad as each morning I dread coming downstairs with him because she'll kick off. He just ignores it but it is really upsetting me to the point I don't want to come down in the morning as my stomach does flips constantly.

I'm also not well myself as I'm disabled and can't walk very far, so when she kicks off I just can't get away.

I've tried explaining to her that it's hurting my feelings badly but she doesn't seem to care and continuously goes on about how much she hates him. When she didn't have dementia she adored him - he literally could do no wrong, but it's getting to the point where I just don't want to wake up in the morning.

Don't get me wrong, I love her, but I think I might still be in denial that she's ill. I'm also really scared that if she goes into a home that I'm going to be on my own (not physically but she's the only one with my bloodline that's still alive). And it's scaring me.

We've got a carer coming in to help, and that can't happen soon enough. As we have to pay, I'd go without food to get extra help in if I have to. I just still feel so alone and upset about all this.

She also won't go out to a day centre to give me a break, she's so stubborn that she doesn't seem to know I need a break or even need quality time with my hubby. I just don't know what to do anymore.

Thanks for reading,

Jackie
Hi Jackie,

sorry to hear that you're having such a bad time lately - the only response I can make (and which I had to keep telling myself) is that it's the disease talking not your Mum. It really does seem to 'take over' at times doesn't it ? And it is so hard having to watch a loving, rational person turn into a demented irrational virago.

When my Mum got to the point of hardly knowing who I was we did eventually move her into a residential care home - once there amongst her contemporaries she did seem to regain some of her old memories - at least she always knew who I was and we weren't at loggerheads any more so were able to enjoy our previous Mother / Daughter relationship again.

Sadly she died earlier this year and I miss her badly but at least I have the memory of happier times.
Hi Jackie,

I just wanted to send some hugs your way. Yes, Susie is right but very difficult to remember sometimes. I have just got off the phone with my mum who tells me she is worried about something but can't tell me what because "everyone" is listening. She is there alone ... Another extra visit needed methinks.

Very difficult to live with this dreadful disease day in day out. You must get carers in to give yourself a break. You may have to pay but the money will be well spent.

Take care, Anne
Hi Jackie,
It sounds like you are reaching the end of your tether. How much longer can you cope? If she refuses to let you have a break, then either your health or your marriage is going to suffer. If she needs someone to come and look after her, then you shouldn't have to pay - have you both had needs assessments recently, if mum is going downhill then perhaps it's time for an update? Mum might now be living in the past but you are living in the present, getting older yourself. It's OK to admit you are struggling, I tried to be Superwoman for too long, now encourage others not to do the same as I did.
The others have gave some good advice so I just want to add that thinking of you too.
Change in personalities is never easy, especially when someone we love, but as Susie has said, it is the illness talking, not your mam.
Hi Jackie,

Sorry you are having such a hard time with it all. Have you considered going with your mum to one of those Dementia Cafes so that you are able to socialise with people going through a similar thing and also get a break yourself? I have a friend who went to one with her mum and found it really helpful. I don't know if this would help you, but it might be worth a shot.

Anyway I wish you all the best,

Eleanor
Hi all

Just an update to what happened after I posted my message.

After admitting defeat, I called the social worker in. They after trying to persuade my mum to go away for a little respite for a couple of weeks and refusing we called the doctor who said that she needed to be seen by the crisis team and to call an ambulance. We did. They arrived about 5 hour later, but she was taken into hospital and they found a UTI. Anyway, she was kicking off in the hospital, so when the crisis team saw her they said that she needed to stay in for the UTI and they'd keep us updated.

A few days later they called to say she was free of the UTI but my social worker and doctor literally stepped in and said that I was too unwell myself to look after her at home anymore. So they put her for a while in the geriatric ward at the hospital, then found her a place in a care home local to me.

Well, she's now been in there 10 weeks and is loving it. She still kicks off big time at dinner (saying they haven't fed her - which is one of the things she kept telling people she came into contact in about me too) but they're dealing with that better than I did and so she's quite happy. They've said that she's joining in all the games, activities in there and also having a shower every day (it would take a shouting match here to get her to wash once if I was lucky every 5 weeks). Hubby goes to see her every few days (as I'm disabled and can't get out since it causes me a lot of pain to move about) and she's got a smile on her face now which we didn't see for a good 5 years.

Now I also wanted to say, if you are struggling, don't let it get you in such a state that you don't want to wake up in the morning. Try to get as much help as you can as your life gets put on hold while you are dealing with everything else, and so you don't get a chance to be you. I don't regret getting mum put in a care home now as I can tend to my own health issues now and so I'll be in better health when I go to see her and she's happy again.

Happy Christmas everyone,

Jackie xx
A lovely update.

Happy xmas to you xx
Really glad everything has worked out for you Image
Merry Christmas!
Hi Jackie,
It was good to have an update from you, great to hear that the new home has worked out so well. Caring is difficult enough when you have good health, an absolute nightmare when you have your own health problems as well. I'm sure the last few months have been terribly stressful, so enjoy Christmas as much as possible, you deserve to have some better times in 2013.