Smiling despite all

[smiles]

Hi,

It been a really difficult week, Friday david's parents arrived for a brief visit after I had to tell them wednesday that David had been diagnosed with Picks. Luckily it was to see our daughter in her nativity play, ice broken by the show they behaved beautifully, not even commenting when I hid some of the goodies they had brought so David would not eat them all at once making himself sick in the process. They left Sunday - sighs of relief all round - his mother is now treating David as if he were about 4, but their hearts are in the right place and they are detirmend to work with me to give the best for David.
We "celebrated" by going to the cinema to see the golden compass - luckily it was a early show and not very busy so David's 6 trips to the bathroom didn't disturb too many people. I still however find his constant noises disturbing and am concerned what others may say - In time no doubt I become accustomed to this and will not be embarrased.
Then disaster, call by work to have another assessment by occupational health - I thought that we would have been able to avoid informing work of the diagnoses until we had the next tests or at least until the next sick note was due after Xmas. Several long phone calls later, I managed to get some free legal advise from some of his old friends who were still in practise and will be off for the appointment a little more optomistic.i have been advised that his work should not be able to do anything until there is a prognoses instead of the diagnoses that we currently have, this should give me a few more months to investigate my probable financial position. I have however been "mrs Angry" grumpy and sarcastic, angry at David for putting me in this position of total uncertainty and financial insecurity. This made me feel even worse as he hasn't a clue really what is going on and is remainig cheerful when he is up and awake. He was just such a capable companion, friend and adviser I miss the man that he was.
Work was just as problematic, and it was with relief that I went out at lunch today to meet friends and recieve their welcomed words of advise - I don't think I would be able to bare this without their support.
Now boasted by their encouragement I am ready to face the challenges of the rest of the week or at least tommorrow and am smiling at the love that they find to give. I hope that you all find some small thing to smile at today and are ready to face each problem positively.

 

[connie]

Hi smiles, I do so admire your upbeat attitude. Long may it continue. So sorry to read of David's diagnosis and, having two friemds with Picks Disease, know what you mean about 'hiding' the goodies'

The most helpful piece of advice we had from Lionel's consultantupon his diagnosis, and consequent advice to stop work because of stress, was to 'go sick and stay sick'. He was quite happy to furnish Lionel with sick notes.

Thus Lionel was kept on the payroll on full pay for 12 months, when he was asked to 'retire on health grounds'. This enhanced his pension somewhat.

I know everyones circumstances are different, but hope this helps.

Hope you all enjoyed the 'nativity'. I have been able to attend both my grandaughters this year. Wonderful.

 

[Westie]

Hello Smiles. So sorry you've had such a difficult week.

I can truly understand what you are going through as my husband was diagnosed with Picks Disease last September. He was 51 and we have 2 children, then aged 9 & 14. It was a total shock and has turned our lives upside down. Peter, too, was unconcerned when we were given the diagnosis - just wanted his dinner, while I was left a quivering wreck.

The situations you describe are so similar to my experiences over this year. Peter will eat any goodies he can find (biscuits, cakes, sweets etc.) any time of the day. He also gobbles his food as if starving. Going to the bathroom seemed to become his main activity throughout the day - sometimes 30 - 40 times. Very difficult to cope with that when not at home. I have since discovered that particular problem is due to stress and anxiety. The more anxious he is, the more he will go to the toilet. The problem has almost disappeared now as he is in an assessment unit and visibly less stressed than when at home.

My children have amazed me with their ability to accept this situation and to carry on with their lives. They cope better than I do. Your daughter will adapt to your husband's condition and will, very sadly for you, accept all the changes as 'normal'. My daughter is brilliant with her Dad as she is just her natural self with him.

Financially, it is a nightmare - still is. Peter stayed on full pay for 12 months and I was then able to submit a claim under a permanent health insurance scheme his company ran. This now pays me 50% of his salary and this will continue until his retirement age. I hope David has something similar.

Peter's Mother has found it very hard to see her youngest son suffer from this. She doesn't know how to talk to him and switches between treating him like a baby or totally ignoring him. Peter doesn't seem to notice though as Picks has destroyed his ability to express any feelings or emotions.

Glad to learn you work - I've found that to be a lifeline. Everyone, from the consultant down, has advised me to keep that going for my own sake.

No real advice for you, but wanted you to know you are not alone in what you are going through.

You sound very strong, but please look after yourself and take any help that is offered from anyone.

Stay in touch.

Mary-Ann

 

[Grannie G]

Peter's Mother has found it very hard to see her youngest son suffer from this.
Mary-Ann

Oh Dear!. This is something I really hadn`t thought about....the trauma of an elderly parent having to come to terms with having a child with AD.

 

[smiles]

Thanks again for the responces. I know that for now I have just got to wait and see how his employers react to the news, I hope that they will be helpful. The worst part of Picks so far has definately been the total lack of emotion. I burnt myself on holiday in July and David just looked at me and asked "what about Lunch" I told him that it was ready but I needed to tend to my arm. He then sat down at the table and ate his food!! It was then that I realised that there was a real problem and that this was more than my husband going off me. When we returned from Holiday David was signed off sick and the slow process of finding what was wrong began.
I am so sorry to hear of another person out there with young children, but encouraged that they have adapted to their fathers condition. Maddy has been so upset that she didn't have a real Daddy who would join in her games.
It would be a great help to hear from any parents that have a child with Picks to know ways in which I could help my own parents in law. They are devestated as David is a much loved only child. I so wish they will find some support from someone, but know that they are of a disposition that keeps their feelings bottled up and hiden from the outside world.