Parkinsons and Alzheimers together


#1

Hi,

I actually joined the online community in early July this year.  My husband was diagnosed with Parkinsons Disease in November 2010 and Alzheimers Dementia in February 2011 at the age of 57 and thought all he had to do was take his tablets and it would all magically disappear, which of course was never going to happen. We have had a terrible 7/8 weeks where my husband went downhill rapidly.  He was falling over, I had to seek ambulance assistance, his speech was becoming inaudible, he also became unable to wash, shower or dress himself and was also having problems holding cutlery and was putting his hands in his food and was totally unaware of this. The final straw came when he began urinating on the bathroom floor and one Sunday this happened 10 times.  I could take no more and begged our local Council to fund 2 weeks respite care which they reluctantly agreed to do.  We have also been able to change our Social Worker as there was a personality clash. The new one is really understanding.  We also have a Community Psychiatric Nurse who has been amazing and my husband has been going to a mental health hospital day unit one day a week for the last 4 weeks and has four weeks left to go.

My husband has decided he wishes to remain in the care home as he knows I cannot give him the benefit of 24 hour care when and if he needs it.  This has been a very difficult thing to come to terms with and the 'guilt monster' strikes me, usually when I go to bed!! I am having difficulty finding anyone who has a partner as young as my husband with the dual diagnosis.  I also post on the Alzheimers Society online forum and so far have not found anyone in my position.  Is there anyone here in my position who can help?  Many thanks for taking the time to read my post. 


#2

Hi Beannie,

I'm really sorry that you've had such a hard time coping with the dual diagnosis and what it meant in everyday life. Unfortunately it sounds like things aren't getting better now that your husband is being looked after in the care home. 

Hopefully you'll be able to find people here who relate to how you're feeling and can help, but remember that you can always call our helpline on 0808 800 0303 if you need to talk to someone. You can call anytime between 9am – 7pm Monday to Friday and 10am – 2pm on Saturdays.

Take care, 
Moderation team. 

 


#3

Hello Beannie

I can totally relate to your story and your feelings. 

My husband had Parkinson's and Parkinson's Dementia.  He was not as young as your husband but was very active.  He also deteriorated very quickly - having delusions, turning against me, becoming violent, not sleeping and urinating in inappropriate places as you describe.  I became completely exhausted and when I asked for help our GP, within the space of 24 hours, arranged for him to go into respite care.  He deteriorated further and I was told I would not be able to care for him at home any longer.   He eventually went into a care home where he actually improved for a time.  He died two years ago and I still have feelings of guilt that I wasn't able to continue to care for him in our home but I also know that I could not have met his needs as well as the care home staff were able to. 

Thinking of you and sending my love and support. 

Worrals

 


#4

Hello Worrals

 

Thank-you so much for your reply, I am sorry about husband. You will never know how important it is to me to hear from someone else who knows what I am dealing with.  At last, someone who can identify with me, I really thought I was the only one!! I know what the eventual outcome will be but try to live for today, which is not easy as I am only 62 and see my friends enjoying life and making plans for the future and I know what my future is going to be.  I also know what the eventual outcome will be and I am trying to make sure each visit to him is a happy one so that when the inevitable happens I know I did my best.

My situation is made sadder by the fact that my husbands older sister has early onset Alzheimers and has now had a brain scan as they suspect she has Lewys Body Dementia. His younger sister in America also has early onset Alzheimers (she is only 55).  I am really concerned about my 29 year old daughter and hope that she isn't going to succumb to either Alzheimers or Parkinsons in the future and that this isn't familial Alzheimers!!  She was offered a genetic test but decided for now not to have it done, a decision I fully support.  I hope we can keep in touch.

Do you have a support network around you i.e. family/friends?


#5

I am so sorry to hear about your husband's sisters Beannie.  It adds another dimension to your worries with concern for your daughter's future.  

I do have good support from my children and wider family and friends. My daughter lives very near which is great. 

Keep strong.!

Worrals