My dad almost certainly has dementia

[JaniceF]

Hi - as you will see, I just joined yesterday.

My dad has just turned 69. He has had a diagnosis of Parkinson's Disease for at least 15 years. Over the years that had progressed. His behaviour has changed very badly in the last 3 years. Looking back, they were probably the early stages of dementia setting in but masked to us by his PD.

He is a very independent and strong minded fellow! His eye sight and balance is just awful now and he keeps falling. From appearance he looks like a shipwreck victim!! It has just slowly dawned on my mum and I what is going on. Although they live very close to us, my mum is caring for him day and night and is exhausted and at the end of her tether.

I don't want to blast her with too much given how she already feels in over her head but know I have to gently push her in the direction of their GP and we urgently need to look into getting an Enduring Power of Attorney set up (if that is still possible ). I have found the Alzheimer's Website invaluable for information and am sure I will glean plenty from all of you and your experiences once I have time to read through more. I cannot imagine the GP will fail to diagnose dementia and then, hopefully, Social Services can be called on for a care package (although I am rather a cynic in that hope as have a profoundly disabled daughter and don't think much of SS from her point of view!).

I look forward to 'chatting' to you all.

 

[Brucie]

Hi JaniceF and welcome to TP,

sorry you needed to come here, but I hope we will be helpful!

Always remember that the Alzheimer's Society Help Line is a good source of help as well: http://www.alzheimers.org.uk/About_our_work/Contact_us/helpline.htm

Members of TP are not experts, other than in the case of their own caring role, so always try to get a balance of views on any topic before deciding anything.

best wishes

 

[Áine]

Hi Janice, I'm sorry you've had need to find you way here, but you're very welcome.

You may also want to take a look at this site:

http://www.lewybody.org/

I don't know how much you've already read about dementia but Lewy Body Dementia is often linked in some way to Parkinson's. The Lewy Body Society are concerned to make people aware of LBD because some of the drugs that are usefully prescribed to people with other dementias can be quite detrimental to people with Lewy Body.

Look forward to seeing you around on TP. It's pretty daunting starting out on getting diagnosis and power or attorney and seemingly endless other things. Take it gradually - you'll get there.

best wishes

Áine

 

[Grannie G]

Hi Janice,

I feel for your mum, and can well understand the difficult time she`s having.

I hope she will be able to get some help from SS even if your father is independent and strong minded. That is the problem I face, but unlike your mother I`ve been caring for a much shorter time.

Does your mother use a computer? If she could visit TP, she would find so much `virtual` support from people all over the world who are full time and part time carers.

If not, I hope you will use this Forum yourself. Although as Bruce said, we are here in a caring capacity and not experts, the support and cameraderie is amazing.

 

[Skye]

Hi Janice, and a warm welcome to TP from me.

It sounds as if your mum really does need some support, full-time caring is exhausting, and she has done it for so long.

I think if you do get a diagnosis and referral to SS, you should get some support. Your mum needs to ask for a carers assessment, as well as one for your dad. That's the best way to get carers coming in, and respite care if that's needed.

By the way, have you had one yourself? Anyone who is a full-time carer is entitled to one.

I hope you do manage to get things sorted out. Do let us know how you get on.

 

[JaniceF]

Thank you for your warm words of welcome.

I do appreciate that you are not 'technically' experts but I do believe experience is the best qualification of all and you have already proven that to me.

Unfortunately, my mum is computer illiterate but I am sure I can browse on her behalf!

Thanks for the thought about Lewy Body dementia, Aine, and I will certainly bear this in mind for the near future.

Think I may have 'googled' too much and self diagnosis can be a dangerous thing but he has classic symptoms of the front-lobal type (Picks disease) .

Fair point about me being assessed too! My daughter is only 2 so we are 'new' to this game for her too. What a life, eh?

Janice

 

[fearful fiona]

Welcome Janice from me too. Glad you have signed up to TP, it is an amazing exchange of information from those who have been through it all or those who are just starting up on all this. I have found some really practical support and wished I had known about it earlier. Even if you just want to moan about a bad day, no-one minds because we've all been there.

As Grannie G says the camaraderie is amazing. If you ever want to get away from it all for a few moments, look at Tea Room, we have such a laugh there and you can have a virtual party every night if you so wish. (Alcohol is permitted) I sense of humour is absolutely crucial I think.

 

[Gromit]

Welcome

Hi Janice

Just wanted to add my words of welcome. You have hit the nail on the head regarding experience being the best qualification. I have gained so much from being on TP this last year, and there are times when you really do need someone who understands to talk to - there are plenty of caring people on here.

It sounds like you and your Mum are having a difficult time. My Dad is in very early stages of AZ so I can't really give you much advice.

I hope you manage to get the help that you and your Mum need, its so important to look after ourselves aswell during these difficult times, and not put our own needs on the back burner, so to speak.

I hope you find joining TP a great help for you. My Mum can't use a computer either but I do tell her all of the interesting things I find out from being on TP and this does help us both.

Take care, and welcome.

Alison
x

 

[Gromit]

A further thought for you...

Janice,

Sorry I often think of other things after I have posted.... I notice that you are wondering if your Dad has a form of dementia and you are looking to get your mum to the GP. I have recorded my family's story as a resource for others, I don't know if you have seen the thread so I have attached it for you - I'm not sure if it helps you in your circumstances - but worth a try, there might just be something in there that could help.



http://www.alzheimers.org.uk/TalkingPoint/discuss/showthread.php?t=6718

Wishing you all the best.

Alison
x

 

[Grannie G]

Alison, I`ve just read your dad`s story and it made really interesting reading. There was a lot I could relate to regarding my husband. I`m sure it will be a good resource.
Love xx