Nikki

[Nikki]

Hi, first time ive visited this site...out of desperation! Help! Someone talk to me please.. Am I going mad too... I am at my wits end.

My father is 57 and in the mid-stages. He thinks there's nothing wrong, looks normal. He even tried to re-wire the Christmas lights today... panic panic, arguments, shouting, tantrums etc for 2 hours before he finally admitted he hadn't a clue what he was trying to do (electrocute himself)!!


Mum lives with him, and I am already a carer for my husband! However she is not very capable and I do all finances, benefits, sort all problems out etc. She has recently been very unwell, in hospital. For five weeks I have been running flat out. I am now mentally and physically exhausted... and don't know how I will cope when she goes back in hospital in January 06. They DO NOT want any outside help, will not entertain others at all or assessments... nikki will do it! I have tried to explain that I can't carry on, but they wont listen.

I feel so guilty. Any advice please.....!!! Thanks for listening.

 

[soozieann]

Hi Nikki,

How I know about stubborness!!! My sympathy really is with you, wish I could share a cuppa with you too!

I found in the end, I just had to get cross with my Mum [ although she has since been missing her assessments], and tell her I could not help anymore unless she co-operated- I had to scare her, but of course she forgets so I have to say it all again.

You have to look after yourself too. If you crack up- who will help them then? I have had such fantastic support from the psychiatric nurse and social worker. They have been there for me even if Mum was being stubborn. Are you able to speak to anyone like this?

Take time for yourself even if it's only 15 minutes. I found having a bath with candles lit relaxed me. Also found lying down for five minutes to do some yoga relaxation helped.

Good luck
Soozieann

 

[Finnian]

Nikki,

Snoozieann is quite right. Look after yourself first. If you don't recharge your batteries you can't help anyone else. Sounds like you are already at the end of your tether.

Could you find out if there is a hospital social worker wherever Mum is going and talk to them (behind her back) about support after her stay. Sometimes it is easier to arrange care in a convoluted way. You'll find many carers resort to behind the scene fixes when a direct approach doesn't work. You just have to get very creative - not easy when you are so worn out. You could also try your parents GP or surgery nurse. I'm presuming somebody has been involved recently to sort out the hospital admission.

Or is there anyone in your own support team -- have YOU got support for you and your husband ?

Hope these ideas suggest something that might work for you.
Regards Finnian

 

[Norman]

Nikki
I have said this so many times,the GP is the door to all help.
They can contact Health and Social services for you.
I had all the refusing to accept any help,in the end I just said you will have some one comming to stay with you whilst I am out.
I then arranged sitters through SS.
I played on the "I am worried all the time I am out and you don't want that do you?"
You will have to firm because if you crack up what happens then?
Hope this helps, post when you have the need
Norman

 

[connie]

Welcome

Nicki hi, welcome to T.P.
There will always be someone listening and ready to advise.
Please, please don't go on the "guilt trip". It serves no purpose and is very destructive.
It must be a very hard time for you, but you have come to the right place.
Look after yourself, Connie

 

[Sandy]

Dear Nikki,

Welcome to TP.

Many of us can relate to what you are going through and the frustrations of parents (in my case, in-laws) who can't come to terms with the challanges of dementia - refusing assessments and outside help.

It may be that you have to use a combination of subterfuge and direct communication. At this stage, it may be difficult to get your father to admit that he needs help (has he been assessed at by a GP or a specialist memory clinic?). We tried the argument that medication could help but was most effective when taken early. That didn't cut much mustard with my father-in-law, but I think it did make an impression on my mother-in-law.

Your mother's stay in hospital seems to have brought things to a head. It sounds like you need to have a serious talk with her to explain that outside help will be needed to be put in place before her next hospital stay. She probably feels quite guilty about having to leave your father and is quite protective of him. It is a big psychological step to admit that your loved one is not safe to be left on their own for extended (or even any) periods of time.

Norman and Finnian both have good points in terms of ways to get in contact with SS. In my in-law's case, I called SS directly and set up a meeting with my in-laws which I attended (the waiting list was about six weeks for that initial meeting). I explained it to my mother-in-law as a someone from the council who could see what help they needed. Once she met the SW, who was very good, my mother-in-law was more accepting of the need for a sitting service.

Hope you get some help soon.

Take care,

Sandy

 

[allylee]

Hiya Nikki, be firm, and put yourself first, if you crumble, your parents will have to accept help.I had all this with my mum too, she refused help from everyone until I was exhausted. On the advice of a fantastic CPN , I took a step back , and we now have regular visits from a social worker and a support worker who takes mum out every week.Im back running round like a mad fool again, but I know help is there when I need to take a breather.
Ally xx

 

[wendy43uk]

hi dont worry

my hubby has alz hes 60 just had it about 4 years uou should have a nurce that calls to see your dad she will help and is thire if uou have problems its a hard thing to cope with how are old uou our kids have a terrible time with thire dad somtimes when i am at work hope this helps

 

[connie]

Welcome

Hello Wendy and welcome to T.P.
I am glad you found us and feel able to add your voice to assist others.
You have joined a wonderful group here, and together we don't feel so alone
(if that makes sense). Warmest regards, Connie

 

[wendy43uk]

thanks

its nice to feel welcome a bit about me im 43 and have been married to john for 12years 9 of those when he was well i feel as though our life together has been stolon from us and i feel john is lost some were and i only find him somtimes when he has insight its a strange life i lead as well as others i ofton feel i must be the only one with a husbund so affected by alz at my age but like i say i live one day at time thats all any body in this sititon can do also my spellings poor and i cant find te spell check so i look a fool on hear but thats life

 

[Lynne]

Wendy

Wendy,
I'll eggskoose yor speeling if you don't miind my errrratick tryping! Don't worry, no one here is a literary critic or examiner.

Best wishes

 

[Nikki]

Thanks for the support everyone. Mum was rushed into hospital before christmas and before i could arrange for any help. She nearly died, kidney failure and septacaemia, but has pulled through.

In the meantime I am left caring for my husband and dad, plus visiting mum every day at the hosp. etc.

Lovely christmas! She should be in for another week. But with all of your encouragement i think i will have to go behind their backs and get social services involved. I had dad sobbing his heart out to me this morning, the alzheimers is making him feel useless and helpless.

I am really really exhausted now! Things have to change whether mum and dad want them to or not.

Thank you to all who replied.

Nikki

 

[inmyname]

Nikki

You really must think about yourself and no one else

Do not let anyone tell you your being selfish because you are not

Its your parents who are being totally inconsiderate and selfish in refusing all outside help but unfortunately IMHE Alzheimers by itself makes its sufferers only think of themselves they loose touch with reality and do not see the suffering of others

I have now pieced together years of totally selfish no one else matters behaviour from my Mother all little incidents but the pattern of developing Alzheimers is clearly a lot longer that most people realise or recognise

You will have to be resolute and firm from herein .......your number one responsibility after yourself is your husband ..........as others have said if you crack up
The system is there to support your parents and they will have to accept it

 

[daughter]

Hi Nikki,

I'm sorry to hear about your Mum and your difficult Christmas. Yes, of course things will have to change and your parents will, indeed, have to adapt, but it won't be easy for anyone. My Mum took a long time to come to accept that something had to be done with my Dad and she also felt useless and helpless.

For me, it wasn't a choice of being selfish, I personally felt unable to think just about myself at that time, when my parents were relying on me to step in and assume the adult role. Even if part of me wanted just to run away from it all (and still does sometimes). After a life time of relying on my Mum and Dad to guide and help me, it has taken time to become used to that reversal and the responsibility that goes with it.

I would take this opportunity to take in all the possible options for your Mum (and Dad's) continuing care. Discussing the options with your Dad, although painful, will give him some feeling of control back. I saw this in my Mum - after her initial despair of realising Dad had to go into a Home, and the tricky few months when he first went in, she gathered herself together and has made the best of things.

I just wanted to let you know that, even if we cannot wave a wand and make the dementia disappear, at least we can strive to improve the situation for all concerned.

Best wishes,

 

[SallyB]

Hi Nikki,

I know you have got loads of excellent advice already but wanted to say, My Dad lives alone and I too did (do) everything for him. I too get the Sally will do it, ask sally, not without sally.

Last summer i was at breaking point (gp prescribed antidepressants) I got social services involved as Dad really couldn't manage. He refused any help, his siblings didn't agree with me and constantly told me that 'if they lived nearer THEY would do it' (all being in their late seventies) the best comment i got was that one of my Aunts would have him live with her if she had a spare room, the funny thing was she is living and caring for another of his sisters with more advanced AD (if that could ever be funny)

Anyway I could bore you and go on and on with how bad things were for me (and of course Dad, he just didn't know). What i really am saying is that he now has two visits each day during the week from a carer and one at the weekends and how life has changed. With his Age concern Home Help each weekday lunch time my life is different. Don't get me wrong, things aren't perfect as know one will ever do it the same as you would do it your self but i carn't do everthing.

So you must get help even if they say no, Be prepared for things to get worse, My Dad was awful screaming and shouting and calling me all the names under the sun. Now he is all smiles and laughs and jokes with the regular carers. Still blames me and thinks they all work for me and i know where all of them live etc but at least i know he is getting help and that someone is going in first thing in the morning.

Sorry have written more than was going to but I would never of believed this could work for Dad. and myself. The most positive thing that has happened for me is that i went away last Oct for two weeks never believing i could and came back feeling so much better that I have not started the Antidepressants.

just wanted to let you know that there is some light at the end of the tunnel it might just be hiding at the moment.

Take Care of yourself

Sally