-Big Thanks to Jessica at Kaiser-
I was referred to Tom and his wife Donna by a Social Worker at Saint Joe's that recognized a family in great need. Tom has been living with Parkinson's for 25 years, and only recently did his care needs start to become bigger than what is wife was able to manage. Donna ran her own successful business, was her husband's caregiver, and still managed to keep up with their household. But when things started to change, it happened very fast.
Tom had just come home from a stay at rehab, he was recovering from a freak infection that really took its toll. His wife is an amazing advocate and noticed he was reacting to his usual medications very differently now that he was home. She took a video that she showed to a nurse at Kaiser, which ended up being a big key to his treatment. Unfortunately that sent Tom directly back to the hospital. This was both a blessing and a disappointment. Tom had barely made it back home, but he needed his medications adjusted immediately.
Here is when I met the couple, in the emergency room. Donna was beside herself as the reality of the situation was weighing on her heavily, she could no longer safely care for her husband at home. He was a fall risk and if he fell, she could not help him up. This scared her, "what happens if he gets hurt, or falls while she is at work and so on". Not to mention she was getting no sleep!
The three of us sat in his darkened room, and talked about needs, wants, and options. Donna and I began touring the next day.
This is a not usual, most often it takes time to find places that can meet the unique needs of someone with Parkinson's, and get tours arranged, etc. But the stars aligned, and we got busy. We saw many places over a few days. We found a perfect fit, but Tom was too weak, medications not stable, and the desired room was not yet available. While this was setback, I helped Donna remain positive. We kept in touch and touring, just waiting to see what would happen.
Eventually, Tom made the big leap to discharge and go to skilled nursing for rehab--this was huge, he was improving!
After seeing about 7 places, Donna picked one that both she and her son felt good about--and this is key! Family and support persons must feel comfortable in the place where their loved one is going to live. Not only will this help the resident adjust because you are at ease when visiting, but it will help staff feel receptive to a new family with new needs.
We often miss how hard it is for staff to get to know a family who comes in with high expectations that may or may not be accurate! It is also hard to allow someone else to care for your husband, after you have given your life to doing so for so many years. Both sides have a big challenge that takes time and grace from everyone involved.
I am happy to report that everyone is adjusting. Donna presented her concerns, and the new community heard them, responded, and even agreed that she was right by adding more support at the home.
This is another victory! No one place is perfect, just like us, no one person is perfect!
I was grateful to be able to work with this family, and I thank Jessica for the opportunity to be helpful.
Morgan Leigh Jenkins, MA