We are married 32 years, so there were good times before he became ill. I have no degrees or titles than enable me to offer these tips for Parkinson’s care except that of being the family caregiver to my husband. For the last 12 years we have lived with this disease. In the beginning he was only mildly affected but over time his disease has progressed to him being a wheelchair patient. For the first 6 years I was his sole care giver, living with and getting to know his limitations that changed from day to day.
He was 71 years old, I, 22 years younger, was 49. (He is now 82, I am 60. ) My career came to an abrupt halt as I stayed home to be the family caregiver for my husband. In desperation I searched frantically for assistance to cover his medications and help to adapt the house to his needs. Everywhere I tried, either there was no program to help us or we were only dollars from being eligible. Finally one day I made the right contact at the PA Department of Public Welfare Area Agency on Aging for our county.
I had tried there the previous year and was told there was no program to help. I called there again and again every few months. On my last call I coincidentally timed it at the beginning of a new program and was able to get my husband enrolled. The program was not for Parkinson’s disease patients only, but for any senior that might otherwise be placed into a nursing home. The goal of this program is to keep the senior patient in their home, out of a facility, as long as possible. We have been enrolled 6 years. This program has been a life saver, life changer.
I am still the family caregiver but this resource
* has provided for us a Certified Nursing Assistant (CNA) to help me care for him and enable me to regain a few hours a day of my own.
* helped us make adaptations to our home so he can use the bathroom and stairs.
* has given him prescription coverage.
I strongly urge you to seek help from this agency if you are or have a senior that needs assistance. There are other agencies that may be able to help in different ways. Keep knocking on doors, making phone calls.
Our age difference has benefited this relationship and how we are able to deal with the demands of his condition. If I were older, I would not be physically able to care for him at home. The weird part of this, if it was me that was sick, because I am not a senior (yet), I would not be eligible for these programs. Some of you may be in this position, and I don’t know what advice to offer to you.
Hopefully you will find the help you need. By the way, being family caregiver in my house also includes two senior Black Labrador retrievers aged 11+, who are on medication. Could the family help? We have no children. My husband has four children by his previous marriage, of whom only one keeps touch with him. She cared for her mother-in-law until she passed away a few years ago. She knows what is involved in caring for her father, but does not have the time due to her other commitments.
I do try to keep her in the loop when his condition changes and she does offer moral support. We all seem to have at one time or another the responsibility of being a family caregiver. Dealing with his varying conditions has given me reason to create some interesting items that help me to care for him.