Hello and views welcome, Respite?


#1

Hi all,

I am new to this forum but have done some reading and seems like lots of us struggle with support and getting passed between specialist/gp/nurse/on and round. Although we are getting lots of input - physio, SALT, nurse etc, my father in law's both physical and mental condition (in terms of giving up) is deteriorating fast.( And we often get contradictory advice between the services.) The only explanation we can draw is that he must have had PD much longer than the 2 years since diagnosis as already he has difficulty swallowing, walking and extreme bowel issues. He's lived on his own for a number of years which could I guess explain how it was hidden / passed over.

Anyhow, we have come to a point where we are considering respite. He's so down in himself and struggling with day to day activities, we are unsure if he's always eating / drinking regularly / taking meds correctly. Me and my husband are always popping round (its an hour away!) and on the phone but feel like a consolidated bit of care and company might give him a physical / mental boost or otherwise confirm that we need to consider something more permanent in terms of care.

Having gone through respite and care with my mother with dementia, I'm struggling to find parkinsons specialist care homes or any advice on how to narrow this down.

Does anyone have any advice/experiences to share?

My husband is desperately upset - its like his dad is fading in front of his eyes so quickly and all the care professionals say he shouldn't be *that bad* yet.

 


#2

we had similar trouble with husbands mum last year, altough she has not got Parkinsons. Ring the local adult social services and they can assess if someone needs help and what sort of help. Also get advice from your dads local surgery. They can be helpful if you are lucky enough to get to talk to right person.

Maybe it is possible for him to stay at home with extra help, rather than a nursing home. But for nursing homes, maybe local surgery can advise?

Horrible situation to be in. Good Luck


#3

Hello Littleh.

 

Sounds to me as if your relative needs a skilled compassionate caretaker at home.

Many PD patients do not drink enough water and that often explains the constipation plus many types of( but not all)  falling issues due to low blood pressure. Drinking 2 quarts of H20 a day raises blood pressure w/o additional Hypotention medications in most instances.

I have been care-giving my wife for 16 years since her Dx and also feel she had PD 2-3 years before out Physicians called it out correctly .

I can say here in the States many respite homes do not take care of a Parkinson's patient or even elderly non PD patients better then would be at home due to the lack of caring employees that work for almost no money.

Transitioning older folks from home seems to benefit the families often ,not the patient.

I am always interested to hear of good results in assisted or nursing home situations for PD patients and families.

Best wishes,

Mike