I am the spouse of a Parkinson’s Disease Caregiver and I will try to make a long story short. My wife had taken care of her father for 6 months before he passed away recently. Her dad on the onset had broken 2 hips from falling 2 years ago and in April of this year the disease had progressed to the point he needed care that her mother could not do. So she moved in with her parents to care for her dad which lasted 6 months. In the beginning he was still somewhat mobile and did his exercises to try to keep his muscles in tone but still took chances by still trying to do things he was no longer capable of doing. She would continue to have talks with him telling him to please refrain from taking chances. Then the disease progressed affecting his swallowing and his mobility decreased. Then his speech became a whisper then to the point he was using hand motions to tell her what he wanted. During this time her mom was unable to cope with all this and she was now taking care of her dad and her mom. She had no sibling help and I would help as much as I could by bringing things she needed and taking care of the 2 acre property by buying a new riding mower and cutting the grass he was obsessed with. In the end he was bedridden because she was no longer able to lift him. Hospice became involved and sent an excellent nurse!!! All during this time I could not understand why she continued this instead of placing him in a nursing home. Her response was my parents took care of me all those years and it is my turn to take care of them. She would call me at night and just cry because of the pressure. I would try to give advice but soon learned she didn’t want advice but a shoulder to cry on. I would always ask her if she needed me to do anything but she always said “no darling.” She would get a 3 hour respite once a week to come home but that was short. The nurse even suggested a 5 day respite for her dad to give her a break but her dad said no and she said she was afraid he would die away from home.
Finally it hit me when I went to visit. I watched her tenderly care for his needs to make him as comfortable as she could. If he made any move she was right there asking him if he needed anything. Then BOOM it hit me I told her you do what you need to do until the end and I will be there for you if you need it. I no longer gave advice but listened to her and gave my support something I should have done from the beginning but I had blinders on and was ashamed of myself for being needy because I missed her. During this time my ex-wife the mother of my kids was in the hospital with serious heart problems and almost died so I was dealing with my 37 and 38 year old kids who were worried about their mom and depended on my spouse as their second mom because they talked with her when they had problems. Then my mom was in the hospital twice within a month and my wife worried about my mom.
To end this story her dad died peacefully at home 2 weeks ago and my wife was where she should be by his side. So the advice I can give to spouses of caregivers is to be there to support them in any way you can, listen to them don’t judge or give advice but listen and be supportive. It’s hard to hear them cry but giving them a long hug and say I Love You and I understand what you are doing and I’m here for you goes a long way. What I got out of this was I am with the most fantastic person I could ever be with and feel blessed that she chose me to be with. She is an angel here on earth and her commitment to her dad has affected a lot of people who have followed her journey of caring, from myself to professional health care staff and to friends.