Off my chest...

[friendlybeard]

Hello,

My father was diagnosed with Alzheimer's about 2 or 3 years ago. He is in a residential home.

I'm 25, and the only member of my family in contact with him due to various family issues - I think this makes things more difficult for me as I can't really talk about it with them. My girlfriend said that it might be an idea to join a support group - this is my first step! Does anyone know of any support groups in Bristol that I could go to?

I thought I was dealing with it ok, but I went to see him last Sunday and found it very difficult. He has now been diagnosed with Parkinson's. - He has been put on medication for it, and is now like a zombie. He doesn't talk as much anymore. Even though he would repeat himself a lot, I would rather that than the silence and the blank look in his eyes.

The sadest thing for me is; it's like watching him die really slowly. I don't know what to do about it, I guess that's it - I can't do anything about it.

I'm also scared of contracting it myself. His brother (my uncle) also has Alzheimer's and is in a home.

If you got this far, thanks for listening.

Rob

 

[Margarita]

Hi Rod Welcome

Have you been in Contact with your local AZ group? As they must know what support groups are around your area yes it is like a living grief seeing someone slowly go like that

TP is a good support group to let out all your emotion, but sometimes it does help to talk one to one with people who understand out side of TP

http://www.dct.org.uk/

http://www.alzheimers.org.uk/Your_local_branch/index.htm

http://www.alzheimers-brace.org/html/links.htm


Just seen this one near you , as our one in London is really good also .

http://www.carers.org
The Princess Royal Trust for carers helps to set up carers centres in the UK to offer advice, information and practical help. Bristol branch: Princess Royal Trust Carers Centre, Vassell Centre, Gill Avenue, Fishponds, Bristol BS16 2QQ. Tel 0117 939 2562.The Bristol Centre also runs Bristol Young Carers project which aims to help young people under the age of 18 who are acting as carers. Tel: 0117 939 2562

Your father may be in a care home , but your still class as his carer even if you do not get pay for it , if you don’t mind me saying

 

[Amy]

Hiya Rob,
Welcome to TP, though I am sorry that your circumstances are such that you have had to find us.
I see that Margarita has already suggested a possible group for you. You could also speak to your GP about counselling, if you need help working through your feelings at present.
How old are your father and uncle? I think that it is only in a very small number of cases that they have signs that there is a hereditary link. You say that your father's medication has been changed. Would it be possible to speak to his doctor and ask if there are any alternatives that do not have such a drastic effect. Was your father distressed before he started the new medication? You are your dad's voice - the residential home may be quite happy that he is very passive - but it might not be completely necessary- just a thought, I may be entirely wrong.
You will find plenty of support on here - if you want it - and people will chip in with advice and questions.
Love Helen

 

[Nebiroth]

I'm also scared of contracting it myself. His brother (my uncle) also has Alzheimer's and is in a home.

I don't blame you for being scared. However, you should note that there appears to be no strong inheritance link for Alzheimers Disease.

Also, it is far more common for the disease to strike in old age - as you are 25 there are many decades of medical research in front of you as well.

 

[Tender Face]

I don't know what to do about it, I guess that's it - I can't do anything about it.

Permission to contradict? You've already done something by finding and posting on TP. Your girlfriend is brilliant with her suggestion - and yes, you HAVE made that first step .... so well done .... of course, there are limitations of what we each can and can't do (and certainly not find that magic wand we all want for our loved ones) .... but you will find a wealth of support here for yourself - and therefore your dad too ....

Gosh, how many times have I thought 'I'm dealing with this' ?.. 'Got it cracked' ... ?only for the rug to be pulled very swiftly ......

TP is an amazing source of support ...... hope you will find lots of benefit from it...

Love, Karen, (TF), x

 

[Skye]

Hi Rob

Welcome to TP. I'm sorry your Dad has AD, it's a terrible disease, but we all know that here, and we all support each other.

I've nothing to add, really, except to say that Margarita's suggestion that you should contact the Princess Royal Trust is an excellent one. They are really supportive of carers.

All the very best,

 

[Grannie G]

Hi Rob, Welcome to TP. You are very young to have a father with Alz. It`s an extra burden if you have no other family members to share it with you.
I hope you find support on TP to compensate, and are able to follow up Margarita`s suggestions re local carers groups.

 

[May]

Hi Rob & welcome
TP is a brilliant place for advice, a 'virtual' shoulder, or just a place to let off steam. Post on here and the support is wonderful, like having a living room full of friends who ALL know what you're talking about (which isn't always the case in the 'real' world).
To use Norman's (moderator) phrase, day by day, take things a day at a time, it's the only way, and try not to worry about AZ being inherited ( link not proven) therein lies the way to a full head of grey hair by the time you're 26!

 

[alex]

Hi Rob

I haven't really got anything to add to whats already been said, just wanted to say welcome to tp and that you've found people who understand that 'thought i was dealing with it o.k.' feeling!

Best wishes
Love Alex x

 

[Lonestray]

Hi Rob, may I suggest the local Carer's Support group they are funded in part by the local Council. Carers UK will put you in touch with your local brnach.
Website: www.carersuk.org E-Mail: info@caresure.org
Carers Line 0808 808 7777 Telephone adviceline open 10-12 and 2-4 daily on Wedensday and Thursday.

In the early years of my wife's illness I found them most useful.
Good luck. Padraig.

 

[friendlybeard]

I am overwhelmed at all l the love and support you have offered me. Thank you all so much!

I've got to go out now, but will look into all the suggestions you have given me, and right a longer reply when i can!

Thank you,

Rob
x

 

[DickG]

Hi Rob

It is difficult when you look in the eyes of a loved one and see that the lights have gone out, how you deal with it is very personal but I know from personal experience that the wise word of fellow TPers can be invaluable in coming to terms with this dreadful affliction.

I too have had to deal with family issues and came to the conclusion that I should ignore them as I had enough on my plate already.

I hope you get some comfort from joining our unique community.

dick

 

[friendlybeard]

Thank you!

Dear all,

Well, I've found a support group in Bristol and I'm hopfully going next wednesday. (Thank you Margarita! )

I feel so much better thanks to your replies. Thank you so much for making me feel so welcome and supported. It's the most support I've had since this whole thing started - thank you.

I hope I can support others on this forum. I'll let you know how my first group goes.

Love to you all,

Rob
x

 

[Amy]

Well done Rob, in 5 days you've found yourself a virtual 'family' - cos that's what we are, and a local support group - you'll be OK - and I am sure that you will be able to offer others help as well. In fact I think it helps us all when we just see one of our members beginning to come to terms with things, and beginning to sort out issues - it gives us all hope.
Thank you.
Love Helen