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Hello - just joined

cris

Registered User
Aug 23, 2006
326
70
Chelmsford
Hello Confused. I think you might be doing better than you think. I think for you to just write on here and express your concerns
about yourself, says to me (sorry I am no expert) that you recognize issues that are causing you problems. Can your local
GP prescribe anything temporarily to calm you perhaps or help you to sleep better. I know you said you take tablets
but were they sleepy pills ? You obviously have the where'withal (I had to look the spelling up) to take a bit of medication.
You said you wonder, do you live with your husband, could he not lock the doors ? to stop you going out. I think you
may accept why it is locked. I do not know. I think attempting to kill yourself, may make your husband feel that he has failed.
best wishes and keep us all updated. even post your thoughts - whatever they are
cris
 

Amy

Registered User
Jan 4, 2006
3,454
Hiya Westie,
Just to let you know that someone is thinking about you.
Maybe if Peter doesnt understand about his mother, at least he is being saved that heartache. Little help to you, when you just need his support.
Take care.
Love Helen
 

confused

Registered User
May 16, 2007
4
[
Hi Chris I do hope yuo are right I went to Quuens medical centre before the scan and saw one nuerologist. I am already on a great deal of different medicaction and have suffered post traumatic stress and agitated depression for years along with fits/faints but things seem realy different the doctor suggested that I tried Topiramte as it may be possible that it could be migranous however all this was suggested and tried years ago before things got so bad with no success. My gp didnt think taking more tablets at the present time was the answer I have to go and see [edited by Bruce: removed doctor's name] for a neuoepsychnometric assessmetn. I am really frustrated and it is so hard to cope. I used to have a really good brain and worked in banking for 15 years but knowadays I cant remember what day it is most of the time. An ambulance has been called twice in the past two weeks and I have refused to stay both times it makes it impossible for me as I hate doctors and hospitals and have spent so long in the past in hospitals.
 
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cris

Registered User
Aug 23, 2006
326
70
Chelmsford
Confused . It must be very difficult for you if you mis-trust doctors and hospitals. I know you want to get better, so maybe you have to make a big effort and
fight your fears and try to trust the doctors, nurses and hospitals. Just think there are some countries in the world where the opportunity for this care would
not be available to you.
cris
 

confused

Registered User
May 16, 2007
4
Thanks Chris I dont think I will ever entirely trust any doctor but have made some headway with my gp he always takes time and never rushes, my husband has nothing but priase.
Unfortunately I see the bad side in most others after traumatic experiences I shall never get over. I see the logic but its difficult to trust anyone nowadays. I know I take it out on my husband when I have another bad day and dread being a burden I tend to shut myself away from most people when I can, its less embarrassing than suddenly realising someone is looking at me when thinking aloud etc I even got angry after one suicide attempt because I was resussetated just wished I had been left, know it sounds gloomy but its how I feel nost of the time. I have had a bettter day today still frustrating but not as bad as most.
 

Milly

Registered User
May 17, 2007
1
I'm new too and in exactly the same situation

Dear Westie, my husband is 51 and was finally diagnosed with FTD after ten years of turmoil in December 2005. Everything you describe has happened to us, and I am constantly fending off the threat of losing our home, being constantly on the verge of bankruptcy, and facing absolute ignorance and lack of empathy from medical and social work agencies. Our eldest son has abandoned us, and the only moral support I receive is from our fantastic 21 year old daughter, but the burden upon her is really too much for her to bear, and both she and I have suffered major depression. However, I would like to say a few things to you, and any other people out there with relatives with FTD:
1) My husband inherited the disease from his father, and is following the same disease pattern. My husband has been developing the disease for ten years, and although the first few years were absolutely horrific, particularly with his lack of empathy for me and the children, and his violent outbursts etc, I hope it is of some consolation to you that he has recently calmed down, and there are windows of his old self coming through. I have read up on this disease comprehensively, and it is more than likely that your husband's behaviour will get better over time. Of course, because of the physical progression of the disease my husband is slowly losing many of his former abilities, but I want to give you hope that the first stages of this disease will probably be the worst, and things will likely improve between you. I think refusal to accept the disease by the sufferer is a major cause of the early problems we have to endure.
2) It made me mad to read your statement that FTD is rare and the medical profession don't know how to deal with it. That's the same old load of bolony I have been hearing from our doctors for over ten years, but it's just not true! I've come across loads of people with it, and it's just not acceptable that the medics get away with failing to provide appropriate services for these patients. What they really mean is that they can't provide services because people with FTD are too complex for them to handle! Most of these patients previously had a high IQ, can answer back, voice an opinion, and often refuse to be treated like children, and quite right too!
3) I fought tooth and nail to get all the benefits we were entitled too, but even so, they are an absolute pittance. I have just won another battle to get Direct Payments from our local Social Services which gives us the money to buy 20 hours care per week from carers of our own choice, in a place of our choosing, and I want other carers of FTD patients to know it's your right to get them. If anyone wants any help with claiming it, I'd be happy to pass on advice.
4) There seems to be many people on this site advising carers to contact agencies and carers groups, and, do you know, I'm sick of hearing it! Is there anyone else out there who agrees with me that just because your relative has a dementing disease, it does'nt mean you automatically want to join a group and talk about it? I deal with my husband's condition 24 hours a day, why oh why would I want to spend any "me-time" away from him talking about it as well? The best thing a carer can do is to do everything they can to maintain a "normal" life, do "normal" things, be a strong person, and not be put in a category. I'm still me, and you are still you. Aren't you?
 
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Amy

Registered User
Jan 4, 2006
3,454
Hiya Milly,
Welcome to TP.
What they really mean is that they can't provide services because people with FTD are too complex for them to handle!
- and I think at times there just does not seem to be the will to provide services for people with any form of dementia.
I hope that Westie finds some hope in what you have shared.

There seems to be many people on this site advising carers to contact agencies and carers groups, and, do you know, I'm sick of hearing it! Is there anyone else out there who agrees with me that just because your relative has a dementing disease, it does'nt mean you automatically want to join a group and talk about it?
I dont think that when people talk about carers groups or agencies they are normally thinking about sitting and talking about it - but as a means to get practical help in dealing with each day, and sometimes companionship from people who are able to empathise. We all have different needs and requirements, we all cope in different ways, we are all in different situations.

You say that your eldest son has abandoned you - does he fear for his own health? If he has seen his father inherit the disease from his grandfather - he must be scared.

Love Helen
 

cris

Registered User
Aug 23, 2006
326
70
Chelmsford
Hello Confused. I am pleased you had a better day yesterday. Afew more positive thoughts and I bet today is going to be better still. :)
cris
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
Milly said:
.
4) There seems to be many people on this site advising carers to contact agencies and carers groups, and, do you know, I'm sick of hearing it! Is there anyone else out there who agrees with me that just because your relative has a dementing disease, it does'nt mean you automatically want to join a group and talk about it? I deal with my husband's condition 24 hours a day, why oh why would I want to spend any "me-time" away from him talking about it as well? The best thing a carer can do is to do everything they can to maintain a "normal" life, do "normal" things, be a strong person, and not be put in a category. I'm still me, and you are still you. Aren't you?

Hi Milly

You sound very angry, and I can understand that.

I am probably one contributing to that anger, as I often recommend new members to contact agencies and carers groups.

Helen is right, my recommendations are mainly to enable carers to access the best possible support. Whether people want to join support groups is a matter of personal choice, it certainly helps many people to talk to others with similar problems. In fact, TP is just such a support group.

But the practical advice and support from organisations like Alzheimer's Society and Princess Royal Trust is invaluable.

As for 'me' time, I would not have this were it not for carers from Crossroads, supplied free via a carers assessment by social services. I use my time to attend classes run by U3A.

So I'm sorry if it upsets you, but I'm afraid I'll continue with my recommendations. After all, that's just what they are. They work for me. No-one is obliged to follow them, or even read them.

I'm glad you've managed to find your own solutions, and it is kind of you to offer help to others.
 

jenniferpa

Registered User
Jun 27, 2006
39,446
I would agree with Hazel and Helen: when we suggest support groups it's more to get the support that you need rather than discuss the "illness" ad nauseum. I mean we can do that here on TP (and on occasion do) but one of the good things about a group such as TP is you can write it out, and then walk away from it, dipping in as you feel inclined. I would also agree with you Milly: I think it's very important to have normal time, but in order to that, you need the support in place.

Jennifer
 

katherine

Registered User
Sep 5, 2006
57
hello - i thought we were having a tough time with my mum, but it sounds like you're really going through it. Specially having your two children around. Poor you. I really feel for you. It sounds like you should be getting more help. Are you getting enough support from Occupational Therapists, Social services, the Community psychiatric nurse, your doc etc. We get a lot of help now with mum but it all came very slowly bit by bit. The social services are really obliged to help you. They have sorted out care workers for us from Shaw healthcare and other stuff. I know it all seems like such hard work just picking up the phone, but can you make them help you more. i hope it gets easier
Kate x
 

Westie

Registered User
May 14, 2007
155
59
South East London/Surrey border
Hello Milly,

Thanks for sharing your experiences. I can relate to every word you say - and that really helps. Can't believe you had to cope for 10 years before getting a diagnosis, what a terrible strain for all your family. I too have now read whatever I can find about the condition. It helps me to understand, even if a lot of it is very depressing to read about. I need to know how bad it could be and then be grateful if, at least for now, things are not quite that bad.

Have had a very wobbly few days. Crying constantly over stupid little things. Had to turn the radio off as can't bear any 'sad' songs. Was like this months ago but not recently. Things seem better this morning. Peter was taken out by BOTH brothers for afternoon & evening yesterday. What joy to spend time alone with my children just chatting or doing nothing but not being constantly interrupted and criticised. When they returned , both brothers have told me they will support us financially to enable me to keep the house and things stable - at least for a few years. Think they suddenly see what a tough time we are having and this is their way of helping. Feels like a miracle. More tears but such relief. Not how I would have closen to live, but I have swallowed my pride and accepted.

I also understand you not wanting to join support groups etc. last year I was told about all sorts of groups I could join, monthly outings Peter & i could go on, support groups for my children etc. I know it was well meant but inside I was screaming. I don't want to be part of this, I don't want 'new' friends, I just want my old life back. I want to be able to meet my friends, do my usual things. Selfish I know, but that was how I felt - still do to be honest to a large extent. BUT, slowly I have changed. Joined a younger carers group run by local Alzheimer's Society. Most carers there looking after a parent, but one other like me and we had a real heart to heart. Helped. Peter going out with A Soc soon on an outing and they are taking him without me which gives me a day with children. (Ideal as mu daughter's birthday that day and Peter doesn't want to be there dealing with "stupid presents") Think what I am saying is that some help can be a real blessing - it's just finding something that suits you. Not everyone wants the same things.

How are you coping at home? Do you have any help? How does your husband keep occupied - mine is sooooo bored all day, but is equally unable to concentrate on things. Hates TV, radio, puzzles (thrown across room) papers, etc. Will play games, quizzes at day centre but refuses to at home.

Has your husband lost weight? Peter has lost about a stone over last 6 months but eats ravenously. Been told to keep a weight chart & review next consultants meeting in 6 months time.

Have heard talk about Direct Payments but don't know anything about them. What is it, how does it work?

Thanks to all of you out there.

Westie
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Hi

I just pop in a read this thread I am quite amazed to read another side of the caring role from a wife view with young children , thank you for posting Westie, was pleased to read that your brother in laws are going to help out
financially to enable me to keep the house and things stable

confused if I read it right it is you that is having those systems
when you are referring to all those system its happening to you not your husband ? also I am wonder if you got your CT scans back yet? how have you been feeling lately , how it going ?




I am absolutely petrified at present I am only 48 years of age I have almost been sectioned twice but the decision was bordeline and my husband managed to keep me at home.
 
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annesharlie

Registered User
Apr 10, 2007
80
Vancouver Island, Canada
Westie

Your latest optimistic note cheered me - especially that the two brothers took him out together - a wonderful change of heart - and are determined to help you financially. Feel no guilt - this is what families should do during hard times, they are doing it as much for their brother as for you and the children, it will ease it all so much to know they are right there supporting you. It is so very hard if you feel you are facing this alone. Enjoy the times with the children, that's your future, really, and they need their mum more than ever.

My thoughts and love to you, hope you're having a good weekend. Take each day one at a time ( says me, who worries constantly about the future!!)

Anne
 

Harold Hill

Registered User
May 12, 2007
20
London
Ask for what you need

I have just read your posting. I empathise with you and understand what you are going through, with such young children to look after too.
Try to hang on to your job and don't even consider selling the family home to pay for care. I thought I would have to remortgage our house to pay for the care that my wife is now enjoying but this is not the case at all.
Our social worker is new to our area but is clearly well experienced in dementia care. She was a tower of strength, quickly arranged made arrangements and funding is not a problem.
Don't suffer in silence - ask for an NHS social worker to help, ask what you need and let us now how you get on. Sorry if all this is just too obvious. I am new to all this too.