diagnosis

[jilly]

Hi everyone,
first time using the message board and very pleased to find it exists !
For the last year my father, 75, has been showing signs of altered behaviour, memory loss, he is neglecting his personal hygiene, will not change his clothes, without my mothers help he cannot dress himself, he cannot tell the time etc.
My mother would not discuss this, as she does not want to hurt his feelings, they have a traditional relationship, with my father being very much the partner who makes all the decisions. My sister and I realise he needs a proper assessment, to establish the cause of his confusion.
My father has no insight into his deteriorating memory or altered behaviour, but agreed two months ago, to go to the GP after my sister and i explanied we were worried about him, although we were forbidden by my mother to use the word dementia. (We had been to see the GP to voice our concerns).
The GP explained she needed him to see a specialist, but when the letter arrived with the heading Psycho-Geriatric Department, he rang and cancelled the appointment. he was very angry with my sister and I.
He is now showing signs of paranoia, accusing my mother of stealing his money etc, but is still able to hold a normal conversation, is aware of his surroundings and recent events. We need his permission to get a referral but as he has no insight into his illness, we are at a loss as to how to proceed.
I would be grateful for anyone who has dealt with this situation, to write back and say what they did.

thanks jill

 

[cathy]

hI Jilly

Your drescription of dads symptoms sounded an exact description of my mum in law. She has just been diagnosed with her dementia and in hindsight it had started 2years ago with the memory loss, obsession with people pinching things and most of the other symptoms your dad has, it was very difficult and still is and from what i have learned always will be to get the person to accept they have an illness because in their mind they are fine. We as a family gently coaxed mum into thinking she had a memory problem and " lets go see if the specialist can help". The diagnosis did not tell us anything we did not know but it did enable us to get into "the system" and therefore open doors to all available help from various sectors. (be it that the doors all open very slowly!). It might help if your mum could accept the situation and also gently coax dad into seeing the specialist.
We found as hard as it was the more of the family that said mum had a "memory problem" the more she seemed to take it on board and eventually we got her there. On the day of the appointment she resisted going but i got her there and within 1hour of coming out had no memory of being there but we had achieved what we went for.

This will not be easy for you but anything to do with dementia is not easy.

Keep tuned in to this website you will find it a great help, i would be lost without it.


Good Luck


Cathy
x

 

[Helen_old]

Hi this is my first visit to this site. I am convinced my mum who is 75yrs old has dementia ,though we (family) are still waiting for her to be properly diagnosed . We finally got mum to admit to the gp that she was having problems with her memory, as the gp refused to refer her until she asked for help herself. I found this very frustrating , as the gp had agreed there was a problem over 12 months ago. So far she has had some memory tests while we had a brief chat with the doctor regards her background & symptoms .Mum was asked to come back in a few months .We were told a nurse would call to carry out blood tests though this is yet to happen. However she has been allocated a social worker & after an initial meeting she seems really nice. At the moment i just feel like i'm in limbo until she gets her diagnosis. We keep being told about help that might be available once shes been diagnosed such as day centres , attendance allowance, medication etc , but at the moment she doesn't qualify. So for now we just have to muddle along on our own. I feel like i'm on an emotional rollercoaster with my feelings & ability to cope changing from day to day along with mums symptoms. As someone else said i find she constantly on my mind & i just can't seem to switch off .I try to take things a day at a time but keep worrying about the future & whats going to happen. I constantly feel guilty & that i should be doing more. Sorry i'll stop rambling on .

Mum's symptoms include very poor memory, can't remember much really except certain episodes when she was young & even these are becoming more vague. She seems to have about a dozen favourite stories & repeats these over & over sometimes altering the details a little.Needs to be constantly reminded of appointments & what day it is. Can't remember if old friends & family are dead or not.Doesn't recognise certain family & friends evan close family such as her grandchildren. Can't remember how to operate household appliances or how to make a cup of tea.The list goes on & varies day to day. The hardest part of this all though is that when she is having a good day in terms of her memory, as she is very aware of what is happening to her & becomes very depressed. This makes me think she may have vascular dementia as she has had mild strokes in the past.

I'd be grateful to hear other peoples opinion of her condition & how they felt about the diagnosis period. In particular if anyone has experience of what i believe is called sundowners as this is a constant concern for us. Mum becomes very disorientated & distressed if she is away from her own home after dark regardless of where she is or who she is with.

I'm SO glad i found this site , it really helps to express my feeling to people who understand me.

Thanks.

 

[Nutty Nan]

Dear Gilly, Cathy and Helen,
Reading all your accounts rings so many bells - and how easy it is to be wise with hindsight: all the little tell-tale signs, the frustration because someone suddenly seems so awkward and clumsy in dealing with ordinary day-to-day tasks and problems, the realisation that they are not reacting the way we would expect (for example my husband's driving appeared to become rather erratic, and he could not deal with ordinary diy jobs), their anger when things do not make sense, the denial, the disbelief at being referred to a psycho-geriatric department ..... it all seems to be part of the journey for us all.
Sadly, I do not have any special tips. It seems to me that the National Health Lottery applies to us all, services are different depending on where you live, and it is therefore up to us carers to make noises, bang on doors, make phone calls and write letters in the hope that we find some support for our loved ones and ourselves.
This site is one of the best things I have found to pick up bits of information, make up for the lack of social life, and it gives me a feeling of belonging - however I express myself, others will know exactly how I feel (and vice-versa!).
Good luck to you all, and keep smiling!

 

[Helen_old]

Dear Carmen

Thanks for your reply. I'm glad i'm not the only one who feels you have to fight to try to get the help you need. Its such a shame. Sadly this is not my first experience of helping someone with mental health problems & the situation was the same .There seems to be such a shortage of services . I've also found that information tends not to be volunteered you have to find things out for yourself. I've often wondered what happens to people on their own without family when they develop dementia. I dread to think. One thing i've found to be true , is if you do find someone who is particular helpful & understanding , eg. gp , nurse , then hang on to them whatever you do. Don't let them get away, marry them, adopt them, whatever it takes (only joking). Though i did seriously consider moving house once to stay with the same gp.

Take care

Helen

 

[adele78]

I have just read your message and sympathise with you. It is the most frustrating illness, not just for the one suffering from Alzheimers but their nearest and dearest.
In my experience, there is no help out there, no-one is interested, I may sound cynical but my mother has had this illness for 7-8 years and so I feel I know what I am talking about. For instance, the so called professionals out there are just doing their job, it would be different if it was a relative of theirs.
Recently, I spoke to Social Services about my mother as I was concerned when she was admitted to hospital from the nursing home (again). She has been admitted to hospital so many times over the past few years, the staff at the hospital know her well. I ended up shouting 'no one gives a f... about my mother!!'. I felt awful afterwards as I don't normally swear like that and started to wonder if I am cracking up too. I have to tell myself to get a grip.

Adele