Parkinson's disease (PD) affects more than just the patient. As a loved one and caregiver of someone living with Parkinson's, PD also becomes a central part of your life. While managing the realities of a diagnosis can be difficult and challenging, our updated Web page on caregiving
can help both patients and their loved ones as they continue to navigate through PD together. On this page you will find tips and recommendations to answer questions and address concerns you may have since your loved one's diagnosis, including:
•how to manage a loved one's care
•how Parkinson's can affect your relationship
•and how you, as a caregiver, can care for yourself.
our free guide that shares advice from Lonnie Ali, wife of Muhammad Ali, who discusses the impact of PD on family relationships.
We encourage you to visit michaeljfox.org/caregiving and hope it will provide insight and comfort as both you and your loved one take steps to alleviate the effects of Parkinson's.
My wife – of 56 years – has had Parkingsons for some 16 years. Up to some 3 years ago it was being controlled by medication and she could still play golf and drive. Then parkingsons dementia kicked in and she is slowly deteriorating. In my wife's case the dementia is mostly loss of memory. She can remember people and events but has forgotten how to do what were for her the normal things – cooking, dressing herself, how to sit in a chair, how to walk (without continued prompting). To add to the problem she is denial that there is anything really wrong with her. She still starts to do things but then either forgets what she was doing or how to do it. She now speaks very quietly and forgets what she is saying making conversation very difficult. She appears to understand what you are saying, but the next minute she has forgotten!
The physical aspect of Parkingsons is fairly easy to cope with – even by family and friends. But the dementia aspects are much more difficult and any support from family and friends wears very thin.
Thank goodness I can afford to have professional Cares to get my wife up, washed, dressed and breakfasted and another Carer for 30 minutes at night to get her into bed. I also have a Carer for 3/5 hours from mid morning to early afternoon. This leaves me to cope with the afternoon/evening and night. We are up 2/3 times a night for some 15 minutes unless I have to change the bed – I consider myself luck is getting my wife up coincides with me being awake with neurological pain in my feet! (diabetes 2)
We have been all through the various medical systems – brain scan, memory clinic, Parkinsons nurse, neurology, etc. We have also been assessed by both my local borough and county assessors.
But the bottom line is – if you are the prime carer and you have money in the bank, you are on your own. All you can expect is lots of telephone numbers of 'Care' people and a few 'Oh dear' 'So sorry' and a lot more platitudes that are of no help whatsoever.
This 'rant' is of no help whatsoever, but I feel better for it!
My husband had PD and as his caregiver, I know how hard some days can be. In addition to the above mentioned, the National Parkinsons Foundation also has booklets available on numerous topics from meds/treatments to caregiving . I stongly recommend caregivers join a support group, During these meetings you get to share experiences , get helpful hints and in general discuss your needs. You find you are not alone and your shared experiences form a bond with members.
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