Can anyone recognise this?

Amy

Registered User
Jan 4, 2006
3,453
Brucie

Hiya ,
I'm a sensitive lady Brucie, we'd better not go there, you may shock my sensibilities!
Amy
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Connie

Yes, I did use the computer for the artistic effect [matter of opinion on that I'd guess]

There are a few bits of software that do the job, but I used Serif's PhotoPlus 10 - I use it for most image manipulation, including my screen shots. Serif often makes older versions of its software available for free on PC magazines.

I prefer myself in Impressionist mode....
 

Attachments

barker

Registered User
Jan 22, 2006
26
74
Benefits of diagnosis

Many thanks for Amy for her reply.

It seemed so strange when I read your reply yesterday evening, that your words about l'iving life for the moment' were almost word for word the comments I had made to the OT and my partner that very afternoon.

The OT visits weekly and yesterday she had succeeded while to was out to get him to open up about his feelings. This was one of the rare occasions when he does become fully aware and open, but the down side is that he then fully realises his predicament and becomes very upset. He admits to being very fearful of the future, understandably so, but I think his anxiety is getting in the way of living life for now.

He is upset that he "can no longer drive, sometimes gags on his food, might make a mess while eating, might make a mess in the toilet, that I might not be in when he gets back from the day centre, that I might leave him"(I have never said that I would)etc etc. He is always saying that he is sorry and pleading with me not to hurt him (which of course I never do, nor have I ever done). I would guess that for at least 50% of his waking hours he is in an anxious state. Fortunately he has a prescription for tranquillizers, which I can give him when he gets too wound up. He is then much calmer but they do make his tired. When he is out and in other company however, he is distracted and can appear normal to those that do not know him or didn't know him before the illness. He can also be distracted and consequently calmer, when watching a play or film.

I cannot follow any interests that I may have, as he needs me with him all the time, as he is terrified to be alone. The only respite I get is when he is at the day centre, 2 hours from the OT and the sitting service, which will cost £12.50 an hour from April. His children take him out for 3/4 hours on a Saturday or Sunday; these are the times I catch up with friends and family.

I may book to go way when he is in respite in June, but this means going on my own, as everyone I know is working.

The reason we need a diagnosis, is that if it can be proved to be alzheimer's, he may be able to take Aricept, but if it is some other form of dementia, there is no treatment.

I'm rambling again. Many thanks for your interest, to coin a phrase "it helps to talk".
 

Amy

Registered User
Jan 4, 2006
3,453
Hiya Barker,
What do you and your husband still enjoy doing together? Is a trip to the cinema a possibility? What about card games or dominoes? I'm not quite certain why I am going off on this tack, other than these thoughts are buzzing around in my head.
What a frightening place it must be for your husband, when he has those moments of lucidity and can look into the future. Other than reassuring him that you will be there and do your best, what can you say?
Don't feel that you have to qualify everything
that I might leave him"(I have never said that I would
pleading with me not to hurt him (which of course I never do, nor have I ever done).
. Our relatives have all said similar things.
It sounds so expensive when you say £12.50 an hour for a sitter, and I know dad would say he didn't know if it was worth it, but it is. You must get some time for yourself. What are your interests, even if you can't do them at the moment, what would you like to do?
Keep talking. It does help to share our anxieties.
I've spoken to my dad tonight. My mum has a chesty cough, and another waterworks infection, and they are giving her food supplements as well as her normal diet (I think that they are concerned about weight loss); the doctor is going to see her tomorrow. She has had a sleepy day today. Thankfully she appears quite calm, and dad did manage to get a smile out of her. I think I will try and go to see her tomorrow night.
Right I'm off. Take care.
Amy
 

connie

Registered User
Mar 7, 2004
9,519
Frinton-on-Sea
Hi barker, were you describing your husband, or my Lionel.?

That awful half world, where they realise where they are and what lies ahead.
You must take whtever respite you can, in any shape or form, to enable you to carry on.

Please share your thoughts with us, and as Amy said, you never have to 'qualify' anything. We have all been there, in one form or another. If it helps at all, you are definately not alone. Take care of yourself, Connie
 

Áine

Registered User
Feb 22, 2006
994
sort of north east ish
barker said:
Respite care was reasonably successful. It took me half the week to settle to it, as I missed him far more than I had anticipated, especially as I had reached screaming pitch before he went. Do others feel like this, loving the person but losing sight of these feelings sometimes because of the constantly stressful situation?
Hi Barker, I can relate so much to this. After several months of dad driving me to insanity he went into respite care for the first time 3 weeks ago yesterday. I thought I'd be so relieved and be able to take a break and chill. I was exhausted with going to see him every night after work. But I was so upset when he went into respite .... and not found it at all easy to take a break from going to see him. Actually, one of the main things for me is that I quite enjoy going to see him without all the stress of being on my own with him. When he was at home I'd visit every night not knowing what to expect, how to deal with it or when on earth I'd get away. In respite it's so much easier cos I can hand over to care staff when I can't cope anymore.
 

barker

Registered User
Jan 22, 2006
26
74
Hi Aine

I was advised not to visit when he was in respite as he would be purging to come home. I in fact told him that I was going away for the week, although I wasn't> I desperately wanted to phone him but couldn't for the same reason. It was the first time that we had had no contact; not hearing his voice was very difficult. I knew he was being well cared for but I was aware that he was fretting as various people visited him while he was in. I hope that things are more settled next time.
 

barker

Registered User
Jan 22, 2006
26
74
Hi Amy

Unfortunately he will not be left alone at any time, as he becomes very anxious and frightened. His daughter and son take him out on alternate weekends for 3/4 hours. We have the OT for two hours most weeks now. He goes to a day centre on a Thursday; he is picked up between 8-10 and is home again between 3-4pm. Up until the end of this month we get a sitting service 2 hours a week, but as from April we will have to pay £12.50 per hour. A befriender takes him out, usually to the cinema, once a week.

On Tuesday we are having a Carers Assessment done and so hopefully some sort of sitting service may be put in place. We do not have the services of a CPN or permanent social worker.

We do go to the theatre and cinema and take regular holidays still, although these are becoming more and more problematic. He is usually, although not always, a little more relaxed whilst on holiday.

I spend the free time I get generally chilling out, visiting friends and relatives, catching up with paperwork etc.

By the way, we went out tonight with friends for a meal, and it went really well. We both enjoyed it. He was worn out when we go back and went straight to bed. He asked on the way home 'I didn't let you down did I?' My heart goes out to him; it made me feel tearful and I had a lump in my throat. Oh I do love him so much.

Hobbies and interests for me
 

barker

Registered User
Jan 22, 2006
26
74
Diagnosis at last

We have just been to the National Hospital for Neurology in London for 4 days. After 3 years in the wilderness, it now seems almost certain that the diagnosis is one of Pick's Disease. I would welcome any comments, advice, personal experiences by anyone whose loved one has had a similar diagnosis.
 

barker

Registered User
Jan 22, 2006
26
74
The right thing?

I determined not to tell him that he had Pick's, and to wait until we go back to London in a couple of months. However, I ended up in a tight corner tonight; I told him it was frontal lobe, as the doctors had already :mad: mentioned this to us. He then asked me how this differed from Pick's, which his brother has. Of course I had to say it didn't differ and that it was indeed Pick's.

He seemed to settle to it quite quickly but means little. What a predicament. Anyway, just felt like talking. Would love for someone to reply, feeling very vulnerable right now!
 

Amy

Registered User
Jan 4, 2006
3,453
Hiya Barker,
For some reason just switched my computer back on, so maybe I am meant to reply, but I really don't know what to say, other than I am here. Maybe it is best that you don't have to try and keep a secret for another couple of months-that could have been hard on you.
I don't know anything about Picks. What is its progression?
Take care Barker. You are not alone. I will be here for a little while if you want to post.
Best wishes,
Amy
 

Members online

No members online now.

Forum statistics

Threads
114,965
Messages
1,681,444
Members
65,970
Latest member
lesley-Gaye