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What do you wish others knew about being a caregiver or care partner?

It can sometimes be hard to express what it’s like to be on the journey of Parkinson’s caregiving. What do you wish others knew about your caregiving experience? Share below!


Community Answers
  • nortonvivian
    11 months ago

    We are both in our early 80’s. Husband, 84, doesn’t have terrible tremors but deals with stiffness, optic nerve damage, and very limited walking…needs a wheel chair outside the house. He has always has been somewhat a loner except for his golf friends. Unfortunately most golf friends have passed on.
    I, the care giver, having always been an active cyclist and doing volunteer work find it far easier and less stressful to keep outside activities at a minimum. I still practice once a week with a senior band (65 members) and often go to the Y to (bike) spin/swim depending upon how much time I have.
    We are working on keeping a routine starting in the morning with stretching exercises. On to breakfast. A short nap (for him). Often a ride around town to see progress on construction sites and a new interstate bridge over the river.
    The most difficult part of care giving is that all my children (this is a 31-year long second marriage) live 3 hours away. It is hard on me not being able to go to visit them or my 99 year old, very alert aunt. John can’t stay alone for the whole day it takes to drive there and back and the drive is just too difficult for him.
    His children are great and arranged among themselves to help out so I could go to Texas for a granddaughter’s college graduation. They also make a point of having some contact most weeks.
    All in all we get along quite well.

  • Jessica.Hall moderator
    10 months ago

    Hi @nortonvivian, it sounds like your husband is fortunate to have you and you have a pretty good routine. So glad to hear you are doing well. Thank you so much for being here and sharing with us. Wishing you both well. Kindly, Jessica-Parkinsonsdisease.net Team

  • sandiatthebeach
    11 months ago

    This is the most physically and emotionally taxing job I have ever had. It takes strength in both ways every day, and some times 24 hours a day. It’s frustrating, puzzling, unpredictable, mind-blowing, surprising discouraging and encouraging, and intellectually challenging all at the same time.

  • LuLu
    10 months ago

    I totally agree. My husband pushed and pushed and pushed me away when he was still functioning pretty well. And now that he really needs me…my heart is no longer there. I definitely wouldn’t call him my “loved one.” But I can’t abandon him. I feel sorry for him. I’m there for him. Miserable…but there.

  • Chris H. moderator author
    10 months ago

    Thanks so much for your perspective, @sandiatthebeach. It is an incredibly complex and difficult job. What’s one of the encouraging moments you’ve had while caregiving? – Chris, ParkinsonsDisease.net Team

  • janeclapp
    10 months ago

    I went through every emotion you are experiencingi for many years but the last two years before losing my husband were the worst. I let myself deteriorate to the point that I am still paying a price from sleep deprivation and emotional breakdown because I tried to be SuperWoman and do all the caregiving myself. As a result, I was not giving him the best care, although at the time I did not realize it. My best advice to you is please ask for and get help.

  • Chris H. moderator author
    10 months ago

    I’m so sorry for your loss, @janeclapp. Thank you for sharing about such a difficult time for you. And we appreciate your advice! Wishing you well during this time of recuperation. Take care. – Chris, ParkinsonsDisease.net Team

  • deucharhouse
    11 months ago

    Parkinson’s isn’t the same for every Parkie, mentally or physically. It’s great if others offer something specific to help, instead of saying “let me know if you need anything.” Please listen to us caregivers. This is a much more difficult job than I ever thought it would be.

  • Chris H. moderator author
    11 months ago

    We definitely understand that, @deucharhouse. Thanks so much for weighing in. You bring up some great points. What specific things would help you the most? – Chris, ParkinsonsDisease.net Team

  • jewel9611
    10 months ago

    I have a brilliant man for a husband. Unfortunately when it comes to PD he seems to have a blockage… He has not kept up with exercising- a use it or lose it component which is very important to PD. His mobility is beginning to be challenged. I wish there was a guide line for care givers as to how far we can push, before we are “pushed out!”.

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