Please somebody help me - I am scared

DianeG

Registered User
Oct 12, 2007
50
0
Glasgow
Hi,

I have not logged on or posted on this site for some time. I thought I could cope with everything but not sure anymore.

My mum is 57 and has Alzheimers. She was diagnosed about 3 years ago after a few years of not having a clue what was wrong and endless tests. She is currently taking part in a research study with the Glasgow Memory Clinic (our hope that we could do soemthing to try to slow this down). I reckon she has been given the placebo though.

Over the weekend mum soiled in the shower, had no clue what she had done and my dad lost it. He then came up to see me and tell me what had happened. We dont know what to do or what to expect next.

I have just walked through the 7 stages of Alzheimers and in my view mum is at stage 6 with one symptom of stage 7. Oh my god - I cant believe this is happening to my own mum. I am terrified that her decline over the last 6 months has been so rapid and unsure what that now means for the next 6 months.

I went down on Saturday with new tops to revamp her wardrobe and help my dad. He is not the most fashion conscious, mum has no clue anymore about what she is wearing, whether it fits, or is inside out but I am trying to still have her look lovely - the way my mum always was. Going down with the tops was an excuse to make sure they were both okay after the shower incident to be honest. I worry my dad can't cope. I know he loves my mum so much and it is killing him to see her wasting away (sorry for the term but its how it seems).

Mum and dad moved a year and half ago into sheltered accommodation with a warden as support. We have home care in place but with dad still having to work and me working full time with a 5 year old son too, mum is on her own quite a bit. I am wondering how much longer they will be happy to have mum there and when they might say it is too much and we have to look at alternatives.

Scared for mum, scared for dad, scared for me - also scared that it is going to happen to me in later life too. My husband worries about me, he find it hard to cope with mum and other than me and my dad - it feels like no one really cares about what is happening to a really lovely lady.

Sorry this thread is so long and dis-jointed, my head is all over the place as you can see.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,443
0
Kent
Dear Diane

There is help for you out there but you need to ask for it.

Has your father had a Carers assessment from Social Services? Are you in touch with the local branch of the Alzheimers Society? Does your mother`s Consultant see her regularly?

If possible it would help if you went with your parents when they seek any advice or support so you hear it first hand.

The decline is very frightening but you will be well supported if you keep posting. Let the people on TP who have been through similar experiences help you through this.

Love xx
 

Vonny

Registered User
Feb 3, 2009
4,584
0
Telford
Hi Diane,

I'm not surprised you are scared - this is a scary disease. I too have looked at the 7 stages and according to that, mum should have passed away about a year ago, so it doesn't do to take too much notice such information. Each sufferer is different and although there are general indicators, such as the info about the 7 stages, not everyone will follow it exactly.

In the meantime, try to concentrate on practical matters. You have enough to worry about without fretting in case you will get it. That thought has occured to me and I just try to push it to the back of my mind and take each day at a time.

Have you discussed all care options with your dad? If not, maybe it is time you sat down with him and had an honest talk about how you are both feeling. Whilst it's lovely that you are helping to care for your mum, you can't neglect your 5 year old. I neglect my son more than I would like, but at least he is 15 and able to fend for himself to a large extent. Perhaps your dad could get someone else in to help as well. I assume your mum has a Social Worker? Get them on the case as well. Your lovely mum deserves and needs help, as do you and your dad. Don't try to "go it alone" because you will just become even more exhausted

Wishing you all the best

Vonny xx
 

DianeG

Registered User
Oct 12, 2007
50
0
Glasgow
Oh Vonny, just the fact you took the time to reply to my thread has me in tears (sitting at my desk in work).

I hear you though - everything you say and you are right. I guess I am avoiding having these kind of chats with my dad. He is a proud man, stubbon and doesnt show his feelings much. I on the other hand am very emotional - I say it's because I care so much.

I think we need to get re-assessed so will get onto organising that. I dont' want to mention other care though - dont really want to be thinking along the lines of a home - just seems so cruel and heartless of me and also scared dad will go off on one thinking I just want rid of me which is really not the case.

Thank you so much. I am glad I logged on this morning.

Diane x
 

DianeG

Registered User
Oct 12, 2007
50
0
Glasgow
Hi

Yes we had a carer's assessment but that was Christmas time so need to do it again I think.

I go to the Memory Clinic as often as I can. It is hard as I work 40 miles from home (in the opposite direct to the memory clinic) and my job takes me away from home a lot too. In this climate I am working so hard in case of job losses - that wouldnt be helpful at the moment.

And thank you...I will keep posting - just knowing someone is listening and actually understands is really comforting.

Diane x
 

Vonny

Registered User
Feb 3, 2009
4,584
0
Telford
It may help if you reassure your dad that you simply want the best for both your mum and him. My dad has only recently started accepting help, firstly from my sister and I, and then from Social Services.

I think I got through to dad by telling him that yes, I was selfish, but I didn't want anything to happen to him, let alone mum. It started him realising that he needed to look after himself a bit more.

If you are careful, I'm sure you can convey to your dad that you are only trying to do your best for them both. If he is unable to accept help at the moment, don't despair. He may need some time to come round to the idea.

Good luck and please let us know how you get on

Vonny xx
 

Trying my best

Registered User
Dec 9, 2008
237
0
Yorkshire
Hi Diane,

I can empathise with your situation.... my mum was 64 when she was diagnosed 3 years ago, a few weeks after my son was born. Her husband died in 1999 so she moved to a house around the corner from me so that I could look after her. We never expected her deterioration to be so rapid - every time I've thought I'd go things 'sorted' a new disaster has cropped up. Mum is now in stage 7 and I reached the point last year, where I realised that I simply could not cope... devastating!

If your mum is anywhere near the stage my mum is at then she definitely should not be left alone - it simply isn't safe. It sounds like she is, if she doesn't understand that having soiled in the shower is a problem and creates serious risks. And as you say, other residents in the sheltered accommodation may start to complain, or put pressure on your dad.

You and your dad DEFINITELY need help from social services and the NHS. Other family members were very reluctant to get these 'official bodies' involved but I insisted (because the situation was killing me) and it has been mine (and mum's) salvation. She now has full NHS funding (Continuing Care) for 24 hour care at home. Although there are LOADS of assessments involved, this is the only way to get real, practical help. Even if you can't get continuing care, you may be able to access day care or respite facilities.

Good luck!
 

Nebiroth

Registered User
Aug 20, 2006
3,510
0
First, it's worth having mum's health checked. Things like UTI infections can cause dramatic declines. There could be a reason for mum changing so suddenly.

However, it could also just be the progress of the Alzheimer's. Sometimes a change (like toilet troubles) appearing for the first time can seem like a sudden decline, although really they are just a new symptom.

Your mum needs reassessment from Social Services. This will look at her care needs, which have obviously changed.

Then your dad should have a Carer's Assessement. This will look at his needs, separate from your mum.

It sounds as though things can't go on as they are, unless you get a lot more support.

I don't doubt that you love your mum and would do anything for her, but you do have to consider your own life, and that of your five year old. It will do no good to make yourself ill trying to do everything.

Given your role as carer alongside dad, then it seems entirely appropriate for you to ask to speak to mum and dad's assigned social worker and to express your worries, request a private meeting as you feel you can't speak freely in front of dad.

It might well be that the social worker will broach the idea of residential care. It sounds as though, sad to say, this will have to be considered before very long.

Dementia being progressive, and untreatable, mum will get worse - sometimes this means people are easier to care for, because they become passive, although their physical needs are more. Sometimes behavior can become very difficult to manage. Do you feel mum is at risk if she is left on her own? For example, could she light the gas, wander, fall? It will not be possible to leave mum on her own, at all. It just won;t be safe.