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Caregivers and Care Partners

Carer Needing to Offload

  • By Deirdre

    Hello – I joined today to offload really in a safe environment and maybe get some tips/pointers.
    I care for my husband who has had PD for 20yrs, he is 69, we live in the UK. Last summer ‘Forest Gump’ kicked in and because of this his falls escalated (I call it Forest Gump as he can’t stop running). A lot of his falls are down to not being able to risk assess and he thinks he knows best. The start of this year he had a heart attack, was hospitalised locally then moved to a Specialist hospital 2hrs away whilst there he had a cardiac arrest in front of me, stopped breathing, was resuscitated with CPR & electric shocks, spent a week in critical care & 21 days later is allowed to come home. Every day he was in hospital I was with him from 8am to 8pm. exhausted was an understatement and that exhausting feeling stays with me.
    I do everything in the house & outside (3 acres), we have 2dogs oldest one is 16yrs & had her 3rd stroke last month, I slept with her on the floor for 2wks – slowly slowly she is getting stronger.
    My husband (when reminded/constantly nagged) uses a frame in the house 80% of the time, the other 20% he is like a pin ball bouncing off the furniture/walls. I am constantly on heightened alert to noises/bumps and run like a mad women fearing he has fallen. Last week we got a mobility scooter which for the first time in ages has allowed him outside & we walk the perimeter with the healthy dog daily. His day he wakes 7am’sh stays in bed till lunchtime watching TV – he does come into the kitchen for his breakfast then returns back to bed. I use to bring his breakfast to him, that’s stopped now as the carpet & his surrounding area had breakfast as well, I was hoping with him having to come to the kitchen for his breakfast he would then stay up for the rest of the day. When he does get up he moves to his chair in another room & continues to watch the TV till bedtime. I feel like a broken record from continuously encouraging……nagging….shouting ‘he needs to exercise’ (1) for his Parkinson’s (2) preventing the next heart attack. We have had a treadmill for 3mths now, he has been on it twice! We rarely go anywhere, he doesn’t want to & if we do he wants to come home not long after arriving. I feel my days are 24/7 caring/washing/cleaning/grass cutting/cooking/shopping – since his heart attack life for me has stopped, it feels like I haven’t taken a breath. I am sooooooo angry as I feel things could be different if he made just a little effort – am I being selfish?

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  • By doreen.hribar Moderator

    Deirdre,
    Welcome, we’re glad you’re here.
    I am so sorry to hear about the toll PD has taken on both you and your husband. The role of the caregiver is certainly a challenging and difficult one. You are a real life “Wonder Woman”, with quite a lot on your plate, and it certainly can’t be easy. Please try to take time for you, (you are not being selfish).
    Sending you all my best,
    Doreen (ParkinsonsDisease.net Team)

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  • By PwPSpouse

    I hear you! I work full-time at a job that requires some travel. My husband has chronic pain in addition to Parkinson’s (which is not quite as disruptive as your husband’s yet), and I don’t feel like my husband really wants to recognize the heavy burden I carry. Once in a while he will do something like clean a toilet, but there’s very little I can trust will get done unless I do it. And his eating habits I am sure exacerbate his pain and frequent nausea. He will exercise if I go with him, but honestly it’s hard for me to give up that time with everything else I need to do.
    Can you hire the mowing done at least once in a while?

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  • By Angela Robb Moderator

    Hello Deirdre – You have certainly found a safe place where carers/caregivers can share their feelings with other carers/caregivers. It is always important to have a chance to express your feelings and take care of yourself – and it is not selfish! Finding a safe environment to share your feelings is very important. I’ve not only found support online with other carers but also have attended local support groups to find support.
    Have you looked into finding somewhere near your home where you might be able to find one of these groups? Not only would these folks be a safe place to share your feelings but they may also be a resource for helping you find some help so you can have time to take care of yourself.
    Like PwPSpouse said to help you find someone who could help with the grass or maybe even have someone come into your home to help with some therapy for your husband? Or even stay with your husband so you could attend a support group meeting?
    You may even have family or friends who can give you a had. I’ve had friends help us with errands, transporting me home after a medical procedure, or even just take the dog for a walk. I also have someone come and help me with house cleaning every two weeks. It’s helped me not feel so overwhelmed in keeping up with cleaning.

    As for the constant reminding/nagging, I think that part of living Parkinson’s can be so hard for caregivers. I find myself doing the same thing about reminding my husband to take larger steps, chores around the house and speaking more loudly or clearer. It does take a lot of effort for me to not sound demanding. I know in the end, it does help. Sometimes, I will even talk with him about the reminding/communication issue when he’s having a good day, just so he knows that I’m trying to do my best to help. Those little conversations seem to be helpful to me and him to share our feelings about how we both cope.

    Living with Parkinson’s is a balancing act for everyone. Conditions with Parkinson’s can change so fast/in and instant that any help we can get as carers/caregivers can be so helpful. Even though it takes extra effort for us to care for ourselves, we can’t stop looking for help and support.

    -Angela
    Wife and Parkinson’s Carepartner for 23 years (husband has Young Onset Parkinson’s) & ParkinsonsDisease.net Community team member

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