Parkinsonism plus dlb

Living with Parkinson's Carers, friends and family
1
My OH was diagnosed on 23/12/2015 with PD. The consultant said at the time it 'was most likely' with a plus syndrome. At that point I had been hassling our gp for nearly 3 years telling them there was something like PD or Huntingtons or some neurological issue going on. Now after nearly 10 months they've agreed he has dementia with lewy bodies as well. His memory test was 24 I March and he's noticeably worse now. He's just turned 50 at the end of August which is really early for this diagnosis apparently. I do almost everything for him but no matter where I look I can't get any support or help.
2

Hi  Justacarer

 I was diagnosed with Parkinson's June 2014  that was changed to Lewy body dementia in 2015 I'm now 59.

The main trouble my oh and I have found is that all the support seems to be aimed at older sufferers Alzheimer's awareness groups help so it's worth looking into what support they can offer in your area,

My oh pushes me to do things all the time she will only help when it's obvious that I can't do something , she keeps me occupied all the time with tasks that stimulate my brain , we practice mindfulness and have found certain meditation music helps particularly the ones aimed at aiding rem sleep,utube is a good place to find these,

  starting to go off now but will try and write some more later,

   Live well.  Cc.     

Ps I live in the south of England 

3

You are entitled to assessment of your needs as a carer.  Depending on the County this will be done by Social Services or an organisation they have contracted to help carers.  Although this may not result in concrete help it   should give you access to a named person who has the information you need and can discuss your best options.  But first do you have access to a specialist parkinsons nurse and/or PD UK Welfare Officer?. This       willl take you straight  to the section of this site where information on support is detailed:  https://www.parkinsons.org.uk/local-support

4
Sorry it has taken so long to get back to the forum Thanks for the advice. Our issue is also that advice and support seems to be aimed at much older people. We have now had the MHN and PT out to visit and assess our situation and the OT will be coming in the next week or so. They've given me so much advice and have ordered lots of helpful bits and pieces to help me with my OH and also to help him do things for himself. The speech and swallow people want him to have a feeding peg but he's adamant he won't. While he's able to make that decision I'm standing by it although the nurse is trying to get me to push him. I've looked into the rem music and the PT will be giving advice for some activities to keep the memory working. My OH has deteriorated quite rapidly unfortunately and seems to 'zone out' unless I am constantly at him to remain aware which makes me feel guilty as I feel as if I'm pushing him all the time. I feel awful when I leave him to struggle to remember how to do the simplest manual things but I do the same and only help when it's obvious he can't do something. .......He will never ask for help! I'm most saddened to see him struggle to play with our 6 year old on her play station and x box.........of course she is overjoyed that she now wins all the games..........lol. He is now talking about power of attorney and making a living will before he gets much worse!. He says he's just taking each day as it comes but at least the help and support is being put into place now whereas it seemed we were just being ignored a few months ago. Still can't find any carer support groups though as I often feel out of my depth and frustrated as I've never come across this illness before and looking after our daughter and my OH often leaves me exhausted due to my own health issues.......This also makes me frustrated and feeling guilty.
5

Hi Justacarer,

I'm really sorry to hear that you still haven't found all the support you need. Have you tried giving our helpline a call? They may have some suggestions for young carers and, in any case, they are a great source of emotional support and practical help themselves. The number is 0808 800 0303 and lines are open Monday-Friday: 9am-7pm and Saturday: 10am-2pm

Best wishes,

Mara
(Moderation team)

 

6

HI Justacarer.

Don't just talk about making a POA. Do it now while your husband still has capacity and register it as well. It is useless unless registered.

We both made POA's, both types, a few years ago. If we had left it until now we may not have been able to get them for my husband.

7

Hi justacarer,

I am sorry to read your troubles. I am 53 and have been given the same diagnosis as your OH last year.  I am earlier with my symptoms although I am aware of a steady decline.  My OH has taken my diagnosis quite badly, we have found a local support group who have been fabulous with her. The lady who is the point of contact has been a great help especially by email.  We attended our fist meeting and were made to feel welcome. More importantly for me my OH feels that she has a support network outside of our immediate family. 

I do wish you luck finding the support that your need. 

Sipsincider