# Alzheimers - A curse for sufferer and carer



## 127057 (Aug 18, 2009)

My 78 year old mother who lives with me has early stage Alzheimers, in fact it appears to be early stage moving on to mid stage or at least whatever the next stage is. 

I never understood prior to this what people where going through with relatives who are suffering with AD. 

One of the main reasons for buying an MH is so that I can take my mother on holiday (she has always loved travelling and in recent years not travelling has got her down) 

We are off on a 2 week holiday this Friday to the Dordogne but the run up to it has been a nightmare for her because of getting so confused with when we are going, she is looking forward to it but keeps thinking we are going tomorrow, or that we are on holiday and because nothing seems to be happening, it is not a good holiday. She keeps asking, are we staying here tonight? or when are we going to leave to get 'back'? 

I don't know how other people cope, I am in general a confident person who can usually rise to any challenge, this challenge however has got me by the short and curlies. Am i doing the right things? am I actually coping the way i should? is there something else I should be doing? I don't actually know. 

She is warm, secure, seemingly happy, well catered for but am I coping properly? for the first time in my adult life, in this respect, I actually do not know what I am doing. 

It is by definition not a logical disease and conversations can take several turns without warning. I find it very tiring, my mom finds it less frustrating as time goes on because she is less conscious of what she is getting wrong. I feel permanently washed out due to her not sleeping and coming in and waking me up 2 or 3 times through the night thinking it is time to get up or that we should be up early to go on holiday or that she has remembered a trip that doesnt exist etc etc etc 

I take my hat off to anyone that can and does cope.

I see AD as a curse, my mother has in 2 years gone from being a very active retiree playing golf twice a week, keep fit twice a week, frequently out with friends etc to a confused, unsteady, weakening shell - it is tragic to see.


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## b16duv (Feb 14, 2006)

Gary,

My Dad had Alzheimers too an was very similar to your description of your Mum.

I found it very hard to cope with too, and don't think there is a right or wrong way to be. You may find it easier if you don't explain things that will happen in the future, because she will either forget, or keep thinking that it is past.

Just go day to day, and spend as much time as possible doing things she will enjoy.

David


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## GEMMY (Jun 19, 2006)

My condolances Gary,I pray to god that my family is never affected in that way.A very close friend's wife is and it is heartbreaking.He is constantly taking her on trips,recently to New Zealand and she can't remember a thing,she is only 62. 8O 

tony


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## Mike48 (May 1, 2005)

My MIL had it but it became impossible when she kept running away and ending up in all kinds of places. She kept telephoning the Police imagining that people were trying to break in to her property and got up to all sorts of antics. Her condition became so bad she ended up for a few months in a Mental Hospital and then secure residential care where she lived the rest of her life content because she still believed she was home and held imaginary conversations with her former neighbours.

Its an incredibly sad condition for relatives to endure but my MIL seemed totally unaware that there was anything wrong as she seemed to live in her own world of make believe.


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## ChrisandJohn (Feb 3, 2008)

I really feel for you, and your mother. When we realised my father had dementia and wasn't coping we brought him to live with us (from London to Yorkshire). I do understand how you never know if you're doing the right thing.

Are you getting any help, support and advice from anyone? Particularly professional advice. Personally, I would have thought that travelling around in a motorhome would be quite unsettling for your mother, but if she has always loved travelling this may not be the case with her.  I wonder whether the confinement with her might be particularly difficult for you though. Try to make sure you get some breaks for yourself.

Best of luck


Chris


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## mandyandandy (Oct 1, 2006)

Having worked with the elderly and in particular AD sufferers and their carers since I was 16 my heart goes out to you. 

I think you are in one of the hardest stages, the continual flip from one minute being there and compos mentis to the next not sure where they are or why is very hard on both parties and totally wearing and frustrating for both. Very upsetting for the carer who is watching the decline but can do nothing to stop it. Very frustrating for the actual person as they are still aware that there is something wrong with them but cannot concentrate long enough to work out what it is. 

I think once the lack of memory stage and the frustration of not knowing where they are or why or what happened to time, they seem to settle into contentment with themselves and their lives. Although the transition is very hard on the carer the actual caring side can become easier and less wearing.

They seem to move into their own world which is usually a happy place and the easiest way to care for them is to move with them, this is hard and really upsetting as it seems you have lost that person you knew but no one knows what has happened to all the memories they had and maybe this is what keeps them happy and more content. 

I have never gone through this with a relative of my own but sat with many night after night so they can get some rest while still being able to care for the AD sufferer in the day, they can sap alot of energy from you and looking after someone when you are fit and awake is difficult but very hard when you are tired. I worked for a private nursing agency and did alot of caring work in this area of the job, both in peoples homes and in the nursing /residential homes. 

Take care and look after yourself
Mandy


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## patp (Apr 30, 2007)

I agree with others on here Gary. You must work out a way to care for yourself so that you can be there for your mother.

Have you had a proper diagnosis?

My mother, too, had early stage just before she died. When she entered hospital for a bowel problem, that she eventually died from, one of the doctor's commented that confusion was one of the symptoms of her problem.

We had started the process of getting a diagnosis but events over took us.

Our main problem was that she kept muddling up her medication. She would take sleeping pills in the morning and her daytime medication at night. I had to remove it all in the end and put the nightime dose in a pot by her bed and the the day dose in a pot on the dining table. This meant I had to be on hand every day. 

She also got very nasty to me accusing me of stealing etc which still upsets me now.

Do you have other family that can come and give you a break?

What a horrible disease this is.

Pat


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## 127057 (Aug 18, 2009)

patp said:


> I agree with others on here Gary. You must work out a way to care for yourself so that you can be there for your mother.
> 
> Have you had a proper diagnosis?
> 
> ...


Unfortunately family assistance isn't there. Long story but my brother is the epitome of selfishness and now lives in Australia anyway. My mom is the youngest of 3 sisters her eldest is in a home in Australia and middle sister is 84.

It is indeed a horrible disease and dreadful to watch the results

Thanks
Gary


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## DTPCHEMICALS (Jul 24, 2006)

Mum In Law is a sufferer.Last week we had to tel her Father in Law had passed away.
At the right moment i told her that i had some sad news for her and that FiL had died.
After a couple of minutes she said " poor soul did i know him".
After the funeral last friday she thought that she had been to a party.
Saturday enquired into when were we having his funeral.
Yesterday walked up to the care home where he had been a resident for the past two years to see him.

In her own little world she is fine and goes about her daily routine, but as soon as something diferent occurs its as if all the fuses blow and she easily gets confused. Hopefully within a couple of weeks she settles down to a new normal.
She only phones me, even though she has three other daughters, at all times of night.
The real sufferers are the family as the AD sufferer does not think or know what is fully happening to them.

It is a real curse.

DAve p


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## eddied (May 9, 2005)

*Alzeihmer early stages*

:? Buon giorno tutti,
well Donna C is now 77, and very fit physically. On Saturday I had to hold the ladder whilst she climbed up a vine to harvest the Kiwis.
But yesterday at lunchtime, whilst we were eatng some, she asked me where I'd bought them!
She is in the very early stages, and well aware of what is happening to her, which makes it even worse. At the moment we are both coping, with a bit of reciprocal care and attention. We are off in the motorhome at the end of the month to a chestnut and truffle festa in Irpinia. Just before Christmas we are going to the UK for a wedding. That I am dreading, because she has already forgotten two or three times just who is getting married, and how we are getting to the UK.
There is no easy way out. Just your internal strength and faith.
I feel for you all very much, especially if it is a parent that is concerned. If it is a spouse it is easier to face it together.
saluti,
eddied


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## annetony (May 1, 2005)

My lovely Mum had it, one of the reasons we got the van so we could take her for days out and she used to love going out in it. 

Mum used to be up all night wandering up and down the landing shouting mother, which is who she thought I was 

Its very hard to watch your parent deteriorate like that and not be able to do anything, I felt so helpless, we looked after Mum for almost 6 years before we had to let her go in a home, something I always promised I would never do-- but you can only go so long without sleep especially when you are holding down a job, which we both were. My brother used to take her for her tea on a Wednesday for about 2 hours then every other Sunday for another few hours, he did start to have her whilst we had a weeks holiday but she got too much for him he was also working 

We did get respite vouchers so we could go on holiday for a break, get all the help you can, contact social services they can give you all sorts of advice, I hope you have power of attorney, so you can sort out your Mums affairs, I did apply but my Brother went mad saying I was pinching his inheritance, no way I had applied in both our names but he wouldn't go down to sign, so that went out of the window, all we had left was court of protection which I got but it cost Mum a lot of money for the solicitor and payments to the court of protection for holding her money, what a rip off that was 

Sadly Mum died 2 years ago, through supposedly a water infection, but the post mortem revealed chronic pancreatitis caused by gallstones, we knew anout the gallstones but not the other, her doctor said that could have caused some of her confusion 

I wish you all well and just remember all the good times you have had over the years, that is what kept us going 

Take care 

Anne


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## patp (Apr 30, 2007)

Strange that Gary. I have two brothers and, even though they were always favoured over me, they did not lift a finger to help my mother. The one in USA did not even bother to come to her funeral! Told me he had stopped doing things because people thought he ought to! The other just kept giving us advice on how to manage! Luckily we were full timing at the time so could live outside her house.

Do try to find out if there are support networks. Our health centre has one for carers of alzheimers sufferers. We didn't get as far as that but would certainly have used it if we could.

Take care.

Pat


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## 127057 (Aug 18, 2009)

patp said:


> Strange that Gary. I have two brothers and, even though they were always favoured over me, they did not lift a finger to help my mother. The one in USA did not even bother to come to her funeral! Told me he had stopped doing things because people thought he ought to! The other just kept giving us advice on how to manage! Luckily we were full timing at the time so could live outside her house.
> 
> Do try to find out if there are support networks. Our health centre has one for carers of alzheimers sufferers. We didn't get as far as that but would certainly have used it if we could.
> 
> ...


It seems to be a pattern in families, my mother in fact was left with my grandmother, her 2 sisters did nothing to help but the eldest sister got much of the inheritance and her Brother (now dead) got the businesses lock, stock and barrel.

I have tried with social services but it is like pulling teeth.

I contacted my brother in a fit of pique to say he needs to contribute because when I have to go to London or for meetings I pay a neighbour to come in, that costs me £1000 per month on average (and I have to keep my business going) however he just said 'nothing he can do'. He actually came back to the UK for a visit in June for 3 weeks but did not bother contacting us until 2 days before he was returning.

It seems in many families one gets the brunt of it but at the end of the day it is about mom's well being not about him or I but not easy

With any luck the 2 weeks in the Dordogne from this Friday will help, as it gets closer mom is getting more cheerful, seems to have (for the time being) more or less grasped when we are going, I am hopeful the MH is the trick she enjoyed the first trip which was 4 days to Dorset.

Here's hoping

Cheers
Gary


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## patp (Apr 30, 2007)

Well Gary your mother is lucky to have you.

Have a good trip. Hope it all goes well.

Pat


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