I just need some help …

I am 61 and my husband 63, he has Picks disease a rare form of dementia affecting  the front of the brain and has had it for 5.5 years. I care for my husband at home 24/7.

He is doubly incontinent, needs food cut up then he can feed himself but can do nothing else for himself and he can’t understand 95% of what is being said to him.

He says random words that make no sense, this is the only communication that he can manage – all conversation has gone.

He swears and claps his hands loudly constantly and the type of disease that he has makes him have no empathy or care for anyone else.  

Carers come in 3 times a day to bath and change him but this is the only help that I get. 

We did have some help from social services but that stopped when we received NHS Continuing Healthcare and since then everything has been going wrong.  Social services say they are not involved as I have Continuing health care and won’t help.

And we don’t have a social worker now.  I desperatly need some more help.

I used to have some respite every 4-5 weeks but that has stopped.  My husband used to go to a psychiatric hospital for respite but the hospital Trust stopped funding for all respite patients.

He also used to go to an amazing centre on a daily basis. On  a very hot day  when my husband had been up since 4am, he was picked up to go to the day centre he did not want to get off the mini bus when they arrived at the centre.

So they sent a male member of staff that they knew my husband did not like (the only person my husband has ever disliked )to help get him off. My husband raised his fist  to this member of staff which he has never done before, but did not lash out.  

He is never violent in anyway to anyone. Now he has been stopped from going.  He is bereft as he loved it there it was his whole life and it really helped him – and me.  Nothing has replaced any of this and I am beside myself with no-one helping and wherever I ask for help it is not followed through. He doesn’t fit the ‘criteria’ and it is so hard. I’m watching him deteriorate before my eyes.

I don’t want my husband to go in a hospital or home, I can look after him and just need some help. 

I thought the government wanted people to be able to stay in their own homes wherever possible but where is the help to do that?  I don’t know where to turn.

The OT has being trying to get a riser recliner chair (Something that they used and  it worked well  for my husband the day centre as he is a large man)  but so far it is not forthcoming.

The community psychiatric nurse tries to help but is battling against all odds it seems and getting nowhere. 

I have contacted the local carers group who didn’t help, the Alzheimers Society, who came out and made notes and sent a useless letter.  

Someone I know knew of WhereIsTheCare and I contacted them with my story to see if they could help.

 

 

 

 

 

 

 

 

Things That Need Improving:

  1. Help for family carers to care for their loved ones at home.
  2. Communication with family carers
  3. Action calls for help from family carers

Name

Jayne

Town

Southend area

Date Experience Happened

2014

Category

Care In The Community