Dealing with a diagnoses of picks disease

poolmarx

Registered User
May 29, 2011
6
0
South West
Hi,

My mother was diagnosed with the rare form of dementia called Picks disease just four weeks ago. She is 52. The family is obviosuly very upset and I was hoping to post on here to speak with people who might understand what we are going through and to gain some advice.

I have contacted the local alzhemier's society and I'm currently her main carer. I'm struggling to find activities that she enjoys and feel that I'm not maximising the care and support available. It all seems like a labryinth to negotiate. Any replies would be much appreciated.

Thanks
 

Bookworm

Registered User
Jan 30, 2009
2,580
0
Co. Derry
Hello

Hi - there will be lots of people along soon who know more about this than i - but you are most welcome and I hope we are able to offer advice & support and that you will continue to find it helpful coming here.

My first thought after reading your post (apart from saying how sorry I am) is - what did your mum used to like doing a year or five ago - those things with support might be a good place to thing of starting - obviously with supervision and only allowing her to complete tasks successfully.

You don't say what her current stage is - can she wash & make food, make conversation?

It may be around going through photo albums chatting about the past memories she still has??

I would like to think that the activities you do with her bring you lasting pleasurable memories & photos too. Wishing you well, Sue, x
 

Bookworm

Registered User
Jan 30, 2009
2,580
0
Co. Derry
PS I've homed in on activities - we may also need more detail to think about care & support you ask about - what have you in place at present??
 

poolmarx

Registered User
May 29, 2011
6
0
South West
Hi Sue,

Thanks for replying.

Currently we don't have any care sorted. My Dad and I are sharing the responsibility at the moment. We don't think my Mum has been suffering for too long, there has been a noticeable decline for about a year. She is able to dress/wash herself ok but she is unable to cook on her own and struggles going out alone as she struggles paying for items and counting money etc. She finds communication very hard, will reply yes or no most of the time but does not really start conversations. Her speech is often brief, muddled and hard to understand.

We have had a visit from a community nurse who is our main contact but I don't think she will be visiting regularly. I have phoned local alzheimer's group and they offer activities and support. Somebody is coming to assess her ability to complete two simple tasks (an AMPS test). I'm going on a ten week caring course, have meeting with citizens advice soon and found some local dementia cafes and singing sessions i hope to attend with mum soon.

My mother used to put most of her efforts in her job as a teaching assistant. She was very good with children and there are 3 grandchildren in the family that she sees very often. I have found she likes watching music channels, Mr. Bean (!) and we played a simple running game on the wii fit the other day. we have got some old photos out and she often shows these to people that come to the house. We are going to put them in an album soon. I have bought playing cards and painting materials and hope to introduce these too her this week to see if she likes playing with them. We have baked on two occassions also and she enjoyed that. I find it really hard around 4/5pm when she often paces up and down and roams in the kitchen. I give her simple tasks to do like cutting veg and laying the table but she just seems so unsettled. She often just walks upstairs and comes straight back down again. I never know what to do in that situation, how to calm her down/get her attention. I don't have a car at the moment so I can't just take her out. We have a dog and walk that 2/3 times a day. I feel I should be doing more with her and i'm still coming to terms with her diagnoses and often fee quite apathetic about trying new things with her as she herself has become apathetic and withdrawn. But it is a boost when she doessomthign I try. Seeing her running on the wii fit was fun and she was happy when she crossed the finishing line.

Sorry for long post but I do feel like I have loads of things to mention at the moment. Thanks so much for your reply.
 

Bastan

Registered User
Feb 10, 2011
483
0
Manchester
Dear Poolmarx,

I am sorry you are in this position it is a hard disease at any age but seems particularly harsh in younger people. My hubby was 55 when he was finally diagnosed with young onset Alzheimers.

I do feel you need to give yourself a huge pat on the back for all you have achieved in only 4 weeks. You are doing loads with your mum and have already sorted out cafes and singing sessions.

Good luck on the carers course, that sounds a great idea.

love and empathy Bastan. xx
 

poolmarx

Registered User
May 29, 2011
6
0
South West
hi bastan,

Thanks for your reply and i'm glad you think i'm on the right track with what i have done so far. I'm still a bit shocked but just trying to organise as much as i can.

Sorry to hear about your hubby, that must have been very difficult. You're right, it is particularly harsh in young people.

Thanks, i hope the carers course teaches me the best way to support my mum.

Thqnks for your reply.
 

Bookworm

Registered User
Jan 30, 2009
2,580
0
Co. Derry
Poolmarx - you are a natural - I am overawed with your approach - all the right things - keep the things that work & ditch (for a short while at least) the things that don't work. I wonder as you are so creative & keen if the new book out on creative approaches might help - not for a minute suggesting you buy it - would local library get it in??

http://forum.alzheimers.org.uk/showthread.php?p=465480

E.g. from book - give her a camera (with automatic focus) to use & enjoy with her the pics she takes?

Singing/music in some form??

Oh I wish I had your talent for making the loved one happier, so lovely to meet you here, xx, Sue
 

Bookworm

Registered User
Jan 30, 2009
2,580
0
Co. Derry
Attendance allowance?

You have got the benefits you are due Poolmarx?? e.g. Attendance allowance - others can give you ideas what else (I'm still quite early on this journey & don't know it all). & you have power of attorney organised & wills?? Or is she beyond making herself clear verbally??

Thinking of you tonight dear - I am so sorry I can't offer more than a huge hug just now, xxx

(((Poolmarx)))
 

Bookworm

Registered User
Jan 30, 2009
2,580
0
Co. Derry
P.s.

Can I just add Poolmarx - that I have seen people with no verbal ability at all, mouthing words of hymns (would work with any songs well known to your Mum) - I have the signature I have for a reason - music (& songs) seem very important even when words are lost.....

Sleep better for knowing you have friends here, x
 

poolmarx

Registered User
May 29, 2011
6
0
South West
Hi Sue,

Thanks for your posts. Glad you think I'm doing ok. It is nice to hear from people in a similar position. That creative book looks really good, I might just buy it. That idea about the camera is great and will give us something to do together and something mum can create. :) I'm hopefully going to take her to a singing group at the local church soon. And yes, since my mother's communication has declined she responds well to music and I will see if she sings along to some of her old favorites!

As for the benefit side of things I have the disability living allowance form (which I think is the same as attendance allowance but for under 65s) to fill out for her but I haven't looked much further into other benefits. I have an appointment with the citizens advice bureau soon so will find out then. I'm going to get my dad to do power of attorney as he knows the finances better, I'm pretty anxious to get it done soon.

Thanks for all your advice I feel a lot better now knowing I can share my experience and meet people in a similar position.
 

Charlie V

Registered User
Jun 19, 2011
1
0
Hello

My mum was diagnosed with picks disease about a year ago. Thinking about it, she gradually declined over a period of years but we (family and doctors) put it down to the menopause due to her age (54) as it was mostly mood swings. It wasn't untill we were looking at some family photograpjs and she couldn't remember her own brother.

Myself and my dad are the main carers and have had alot of support from the society.

I have very little luck at finding things she enjoys, except crime dramas on tv.

I am still struggling to deal with things.
 

poolmarx

Registered User
May 29, 2011
6
0
South West
Hi Charlie,

We had a similar diagnoses path. As my Mum is only 52 we thought the symptoms of slight memory loss, behavior change and confusion etc were all related to the menopause. We got a diagnoses of Picks disease about 6 weeks ago.

My Dad and I live with my Mum but we also find it hard to find things that she likes doing. She is very withdrawn, emotionally numb and shows little interest in most things. Luckily we have a dog and she walks that 2/3 times a day to keep active.

What local support have you managed to get?

I know it's so hard to deal with, I don;t think I will ever truly come to terms with what has happened. We do seem in a similar situation so send me a private message anytime you want to talk :)
 

Loppylugs

Registered User
Sep 7, 2010
14
0
Hertfordshire
Hi poolmarx and Charlie V
I'm sorry you are both having to deal with a parent with Picks disease and I think you are both wonderful for helping your respective Dads to care. My hb has frontotemporal dementia, which comes under the same umbrella as Picks. I assume you are both aware there is a Picks Disease Support Group which you may find worth visiting, if you have not already done so. Also there is a FTD Support Group forum, where I have found much support and advice (poolmarx I believe you know of this).
Your local Alzheimer's Society support worker would be able to advise you what support and benefits you are entitled to and help you contact the right people and complete the necessary forms. My local branch also has social evenings once a month which are an opportunity to meet others and find out what is going on locally.
You both have a very positive attitude and I wish you both well while travelling this bumpy road.
 

tre

Registered User
Sep 23, 2008
1,352
0
Herts
My mum was diagnosed with vascular dementia but I think she had fronto-temporal dementia. She lost language very early and also started to make rode comments about people " isn't she fat " etc and swear both of which were something she would never have done when well. Some thing she did respond really well to , even when her speech was virtually gone was a couple of compilation records I got of the hits of 1954, 1955 when she was in her mid twenties. She smiled and waved her arms.
I think you are doing really well
Tre
 

cherryb

Registered User
Jul 8, 2011
0
0
Dealing with problems around FTD/Picks disease very difficult I admire you all.

My husband who is 61 now was diagnosed with Frontal Temperal Dementia 18 months ago.We had to travel to Addenbrookes from our home in Norfolk and was told that there was no cure or support where we lived and we would be seen in 6 monthsI got in contact with my local Alzheimers society who were very helpful helping me fill in DLA forms and telling me about there meetings and support group which I attend and find very helpful.
My husband has deteriorated just recently and I too find it difficult to entertain him when we are at home.Although he does like going into the garden and listening to music which he recognises from our younger days.I find communication the hardest.
I am now only able to offer him a 'cold' or 'hot' drink as a choice as he is no longer able to communicate.
He attends day care several times a week which help me recharge my batteries for when he is at home as I have to do virtually everything for him.
One thing I have found useful is a Radar toilet key which can be obtained from the charity for a donation.
I was struggling with letting him go into a public toilet on his own when we didn't have famly with us.this has been very useful and can be used across the country.
I also am not afriad to let anyone know what my husbands medical problem is as obviously he looks quite normal.
Keep up all the good caring work you are all doing as I am sure somewhere inside your loved ones do appreciate what you are doing for them even though they are unable to communicate this to you.
 

Cally1975

Registered User
Aug 15, 2009
10
0
Caring for a loved one with Picks Disease

Just wanted to add a few words of empathy really. My mum (64) has Picks too. Its just a horrendous situation that I wouldn't wish on anyone. All the comments on this thread resonate with me.
My mum is incredibly difficult to manage in that she paces and roams constantly, and recently through the night too. We have to ensure 24 hour a day supervision between dad and me. We have to keep the doors locked because she will be out in a flash and just roams the neighbourhood, in and out of peoples houses, usually raiding their kitchens for food. Her road safety is an issue too. Every day is long and intense as her agitation is impossible to deal with and she can't concentrate on anything at all. Her speech is now limited to repetitive wailing.
I miss her terribly. I can't even let myself think about it too much - I'd crack. I have young kids and so I'm busy and just keep going. I struggle with guilt daily that I'm not able to look after her more and give dad more respite.
So I have no answers or suggestions I'm afraid, and a 'few' words turned into many!

Hope it helps you, as it does me, to know others are in similar situations.

Cally