Don't know how much more I can take

[Chemmy]

I just feel really selfish because I'm worried about how much it will cost. Mum has no savings or property and her only income in Income Support and DLA. I don't know if I can afford to pay for home fees.

You'll find there's a lot of background information on the Society's factsheets which will reassure you about this:

Paying care home fees

When does the local authority pay for care?

If you are at all unsure, then perhaps you could talk it over with someone from you local Alzheimers Society branch: If you type your postcode into the box on the RHS then you'll get the local contact information. They will be able to give you advice specific to your area.

There's loads of help out there and we will help you find it. You and your mum are not alone

 

[rjm]

Friends of mum have already made it clear to me that children should not put their parents in homes and should look after them themselves

i have an answer for those people but I'm pretty sure I'm not allowed to say it on here

 

[Arwyn]

I just want to send a big hug to you. I really feel for you and want you to know that you are cared about. I only made my first post yesterday and have been encouraged and supported already. I am so pleased that people have replied to you too.

You have done an amazing job to cope with your mum's condition/s, for so long. I have been looking after my mum for 4 years 24/7 and only got Adult Services involved when mum was formally diagnosed with Vascular Dementia (stage 3) and depression last Feb. I have felt supported by them and mum's CPN is great. I had to arrange respite (mum's first lot) for an urgent family reason. What a difference I and my husband felt that first night mum was not here. Since then she has been in respite care again (due to my husband having a heart op) and then in hospital after a fall in respite and since then in 30 days short term care with a view to long term care which has been agreed now. It was a very hard decision to make but it had to made! I am still trying to get used to it all and I feel awful about having to do this to mum, but like you...I didn't know how much longer I could look after her 24/7. When I go and see her now I go as her daughter (even though, sometimes mum, thinks she hasn't had a child) our relationship has improved where I could only see it getting worse before! Sorry this is a lengthly reply but I wanted to explain a bit about my situation to try to help you. The most I got up to mum was 15 times during the night...usually it it was three or four times...the lack of sleep was unblieveable...but I had no other job. You get up to your mum and work night's too! You sound an absoloute gem! Please get some help and take care of you too, because you are precious. You don't sound an awful daughter at all! You wouldn't be as concerned about everything if you were or writing here on TP. Please don't be afraid to tell it like it really is for you and your mum, especially to Adult Services! I hope I don't sound bossy here. I care how you are feeling, after reading your post! Thinking of you! Arwyn x

 

[Arwyn]

PS. It is said "that you should walk a mile in another man's shoes." Just thinking about your mum's friends comments to you! Maybe...if they walked in your's...they might feel (say) differently!

 

[Rosalind]

The trouble with this ghastly disease it is creeps up on you. I don't expect you can clearly remember your mum when she was fine, you have been ground down to a terrible state by this little by little worsening of your situation. You are not a trained carer, and cannot be expected to struggle on just because that was what you did yesterday, and the day before, and the day before that.

Even in these times of cuts, there is help out there. The powers that be need to know how close you are to cracking. Don't be all stoical and 'mustn't grumble' - tell the CPN, GP, your local Alzheimer Support people and everyone else that you are not coping. Weep, wail, express your darkest thoughts. Very sadly,your mother's life is changing, and not in a nice way, but you too deserve a life. And you do not need to feel even remotely guilty about not caring for her 24/7. My poor husband is now in a nursing home, staffed by wonderful, kind people who take care of his every need in a way I could never have done. But then those caring people go home at the end of a shift.

Good luck, and NO GUILT

 

[nr32]

So, we had the results of the scan's and it does look like Alzheimer's, there are also atrophic changes and minimal small vessel disease. He said there may be mixed dementia. He has also recommended putting her back on Aricept. He also sent a referral to adult services to get me some help, they will be coming out to do an assessment. She mentioned repite care on the phone. I still feel awful that I cannot do this anymore, but I now I will resent her if I have to give up my job (it took about 5 years of sending cv's in to finally get the job I wanted), and I'm only truely happy when I'm at work, or riding. She's gradually doing less, she just says she can't be bothered, so I'm doing all house work and shopping. She doesn't eat much, just milkshake and ice cream

 

[Izzy]

Good luck with the assessments. Hang in there. x

 

[Grannie G]

Don`t feel awful, you are too young to give up everything for your mother no matter how devastating this illness is for her.
It`s a big enough tragedy for one life to be ruined. There is nothing to be gained by giving up your happiness too.

 

[CollegeGirl]

Just wanted to add my support too. Try not to feel guilty, although it's very hard, I know. I'm glad you're having assessments done. You definitely need help, and possibly even a care home for your mum. This is the first step. At least she's going back on Aricept, so things may improve and a care home may not be needed after all. Feeling alone is one of the worst things - we're all here, in similar circumstances, so we all know how it feels. Keep posting and sharing, because even if we have no answers, it helps. It helps me a lot. Take care and good luck with the assessments - don't hold back, tell it how it is. xx

 

[Kathphlox]

Sooo... the professionals/experts are now saying it could be mixed dementia.. duh!

Do you remember, you and some of us on here said we thought that's what it was.

Some of these professionals (not many) will admit that the carers are the ones who are the experts on the one they look after day in day out.

Have courage, and if you feel like saying 'I told you so', then do it

 

[Chemmy]

Hello again

Glad to hear there's been some progress.

There are many of us on here around the same age as your mum, me included, and I think I can speak on behlf of some of them in saying that if we were your mum, there is NO WAY we would want you to sacrifice your life to look after us. I've already told my children that if anything happens to me, they are to call in the professionals, and put themselves and their family first.

I'd still expect them to keep an eye on my welfare, but as for hands-on 24/7 care - no way.

Please don't feel guilty.

 

[CollegeGirl]

Hello again

Glad to hear there's been some progress.

There are many of us on here around the same age as your mum, me included, and I think I can speak on behlf of some of them in saying that if we were your mum, there is NO WAY we would want you to sacrifice your life to look after us. I've already told my children that if anything happens to me, they are to call in the professionals, and put themselves and their family first.

I'd still expect them to keep an eye on my welfare, but as for hands-on 24/7 care - no way.

Please don't feel guilty.

My sentiments exactly!

 

[SueShell]

I just feel really selfish because I'm worried about how much it will cost. Mum has no savings or property and her only income in Income Support and DLA. I don't know if I can afford to pay for home fees.

Oh NR32 you are not being selfish. When I read your original post it sounded just like it could have been me. I was at my wits end, lost a stone in weigh, felt really ill, stressed out, crying all the time, worn out and had a range of feelings from inadequacy, guilt, anger, resentfulness and sadness. Things changed rapidly once I'd contacted every professional I could think of. I went to see my GP, pleaded with the Psy Doctor for a home visit to my Mum and rang Social Services saying that things are now critical before I pack a bag and run away (I wouldn't of course but felt like I wanted to). Mum was very difficult to handle, became aggressive and refused everything. Social Services immediately booked her in for a week's respite care, but I knew I was never going to get her out the door let alone into the car to the home, so it was cancelled. Mum has now reluctantly agreed for a carer to come in so I can get away and have a break. Like you, I am Mum's only carer and there is no-one else I can call on to help, so now SS are involved its made my life that much more bearable looking after Mum. You are not selfish, because I know if my Mum gets so bad it becomes a serious struggle to care for her 24/7, I will have no choice than to put her into a home. SS do a financial assessment and you will not have to dig into your own funds in order for her to be homed, so don't worry on that score. Hope this helps. Let me know how things go. big hugs, Sue xx

 

[nr32]

Thanks SueShell, that's exactly how I feel. I've always liked to be on control of all aspects of my life, and to have something I can't control scares me. I can only relax when she's in bed, and tbh I dread her getting up as then it all starts. This is the first time I've dealt with AD, so don't really know how the disease progresses. Even if she's been asleep all day, as soon as she sits in the chair she falls asleep again. While "asleep", she laughs and reachs out for things that arn't there. I don't know if she's dreaming or it's the disease. One minute we could be talking about one thing, then she changes to talking about something completely different, or she could pick up a conversation that we had several days ago as if we were just talking about it. Is there a standard progression on the disease, or does it differ from person to person? She has now stopped doing things she used to do, doesn't go out much, is now struggling with cooking, she just says she can't be bothered.