family in denial
 

Hi,
I was diagnosised with PD a few years ago. probably had it for six years.
My family is very indifferent towards about my condition.I would hope maybe a little concern or ,hey dad how can I help. Instead I get silence and well your father had it ,no big deal.
My wife also has been ill for several months and do we get any support?maybe a call once in awhile but no visits.If my wife would die I don't relish being left with such indifference.Sometimes I realy think maybe my last years should be spent in a better enviroment.
Is this a all to common experience for many?

Sorry
 

Sorry you are going through this, both the PD and the indifference. Perhaps you could have a family conference and explain some things to your family, what help you could use and would appreciate, etc. A warning, though, most people cannot handle (or won't) chronic illness and you may be even sadder at their response.

PD, MS, Alz., whatever, you can go online and read countless stories of patients whose families live in the same town/state and get little to no help. Of children who cannot be bothered to even call and check on an ill or heck, forget the illness, just elderly, parent. I hated going to see my mom (every day, sometimes twice a day) in the nursing/rehab facility because most of the other patients got no visitors and they just descended on me when I got there and I felt so sad for them. They would hover around my mom and me as we talked and visited. I know every single person in that facility had a life story, and I often wondered what those stories were....was he a professor, a carpenter, a pastor? did he have a wife, children, grandkids? what were his favorite memories? and on and on. From what I have seen, we treat our ill and elderly terribly in this country and I don't understand why, when every single one of us is going to get old and/or sick before we pass on.

So if you talk to your family, be realistic in your hopes and requests for understanding and help. It is surprising how ignorant people are about PD: perhaps they do not know what help you might need? If so, perhaps you could help them understand that.

Good luck and I hope things improve for you. We may forget what someone did or said, but we always remember how they made us feel. I hope your memories going forward are all good:)

i also visit others sick with PD at nursing homes.Alot of them never get visitors like you said and many others there seldom see family or friends come like you said.I always feel better when I visit and know someday I might well be there also.
I have tried to talk with family and it fell on deaf ears,alot of them have more concern over facebook friends than family.
I might not have been the perfect son to my father who had PD but i was there for him and visited him often.I think today young people ,not all ,are to envolved with this machine.
Im seriously thinking of leaving my grandchildren more than their parents as a reminder of their indifference.
Alot of people know they can get away with family responsabilties.They would never do it to a important person for fear of reprisal.

Did you have a close relationship with them before the illnesses?

If you did, then a discussion might make a difference.
Some family members get very scared and can't deal with a parent's illness..

Sometime family/friends may wait to be asked when help is needed vs offering.
It might be worth it to ask for some help and see what comes of it..

I would suggest you find local Parkinson's support groups, be it an Early Onset PD group or any support group. These groups have regular meetings, Christmas gatherings and other activities that they do together and support one another. The greatest support comes from those who have PD and or their spouses or caregivers. The social interaction and reinforcement of bonds of couple that our programs provide are along with watching the positive effects they have on the symptoms of PD and Aging are the most rewarding for us as a foundation.