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Spouse of Caregiver

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • jeanita
    2 years ago

    Thanks for sharing your story. Your wife is at peace knowing that she did her est. i know that she appreciated your support and understanding. I appreciate your story of strength, compassion, and perseverance. Blessings

  • Chris H. moderator
    2 years ago

    Thanks for sharing this story, StevenLV. Your family has certainly been through a lot recently. I’m so sorry to hear about the passing of your spouse’s father. My condolences to you and your family. You bring up a lot of great points about how to support a loved one who is going through a hard time. It’s natural for us to want to try to help fix things for others, but sometimes it’s best to just be present. Your spouse sounds like a truly wonderful person, and it sounds like you really leaned on each other to get through this difficult time. We appreciate you telling us this story! – Chris, ParkinsonsDisease.net Team Member

  • StevenLV author
    2 years ago

    Thanks Chris! I still feel bad because it took me awhile to figure it out what she had to do for her dad. I was mad because neither of her siblings were of no help and I was worried about her health and well being. But when I watched her lean over him and gently rub his forehead and ask did he need anything I knew then she needed to be with him until the end no matter how long it took. Even though he was lying in a hospital bed looking out the front window he still obsessed over how I was cutting his grass which was not the way he wanted it cut. I have to smile about it now that even though he wasn’t mobile anymore he could still give me his “stink” eye about his lawn.

  • MarySLP
    2 years ago

    Lovely tribute to your caring wife. My dad, who lived to help everyone, hated to ask for help when Parkinsonism impaired his function. As a daughter, I was honored to be able to help. I have often thought that every couple thinking of marriage should first have to experience a big life challenge together. Because the tough times are when people’s true character reveals itself. You are lucky to have witnessed your wife’s loving nature and know that she is there for you and others.

  • denimarie07
    2 years ago

    StevenLV thankyou for sharing your experiences with Parkies and all that takes place within a family. Give your wife a warm hug from me for her love for her Dad and a hug for you for being a wonderful support to your wife. Thankyou again

  • StevenLV author
    2 years ago

    Thanks!!!

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