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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?

  • By doreen.hribar Moderator

    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 ( Team)

  • 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?

  • 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.

    Wife and Parkinson’s Carepartner for 23 years (husband has Young Onset Parkinson’s) & Community team member

  • By 1Morebeer

    I am so tired of hearing my husband hum and he refuses to say that he knows he is humming.😔

  • By Sesimbra

    I joined today after reading the comments in this thread. The comments are so familiar and reflect the frustrations of every day life. My husband has had PD for twelve years (he is now 77) and recently seems to have dropped to a lower plateau. For several years he has been very sleepy but it has got worse, so even sitting with a cup of tea in his hand he may fall asleep. His speech is very quiet and slurred and I find it hard to understand what he is saying. The frustration comes in when I ask him to repeat slowly and loudly and it is just the same. I have asked him to shout (he can), but he won’t. His mobility and balance is very poor and he falls a lot. I read the comment about not using the walker even it is right beside him and that sound familiar!

    I am not as angry as I used to be because it doesn’t help. I still sometimes resent my own health and the active years remaining to me are being used up in looking after him. I am 76 now. What we can do is so limited now – trips to the theatre and cinema are so exhausting and the chances are he will sleep through the performance anyway, so I am reluctant to attempt it. Eating out is not much pleasure for either of us because he has difficulty eating and his food goes everywhere. He usually gives up as he doesn’t want me to feed him in a public place.

    I am afraid of the future and don’t know how much more I can do. I am not a natural carer – it is always something I said I couldn’t do. I can manage if I get enough sleep and the sun shines and can get out on my own for an hour or two. At the moment I do everything at home and in the garden and am chauffeur as well. My husband can do nothing at all round the house, so I am on the go doing the chores and fetching and carrying all day. He is a kind, sweet-natured person, but no longer a companion or partner.

    I don’t think the doctors have tried hard enough to address his medical problems of very low blood pressure and excessive sleepiness. If these two issues were improved it would greatly enhance our quality of life.

    Any way. That is enough of an offload for now! Wishing all you fellow carers a good night’s sleep.

  • By Angela Robb Moderator

    Hello Sesimbra – Thanks for sharing your post. I’m glad you found this place to “offload”. It’s so important to have a way to share your feelings – either to “offload” or to find those who can help you find resources.
    I want to ask, have you had any luck with speaking with the doctors about tackling the low blood pressure and sleepiness? Maybe even you meeting with the doctors alone to discuss a way to find solutions to these concerns?
    I’m so glad that you take advantage of opportunities to give yourself a break and do some self-care. That is SO very important for all carers!
    Parkinson’s carepartner and community team member

    • By Sesimbra

      Thank you Angela,

      Strangely enough, it may be coincidence but we were advised that my husband should drink at least two cups of strong coffee before 1pm every day. He is not usually a coffee drinker but after two days of this he is much more alert and has actually tidied up his desk! I do hope this is the beginning of a new trend and if so, what a simple solution, or part solution to the problem of sleepiness. He says his mobility is easier too.


  • By Angela Robb Moderator

    Oh Sesimbra – That’s wonderful news!!! Congratulations on the breakthrough!!! I’m always amazed when a very simple solution does miraculous work to help. 🙂
    All my best,
    –Angela Robb
    Parkinson’s carepartner and community team member

  • By Sussie

    You have just described my life with my husband! I know he has Parkinson’s but didn’t realise these were all symptoms. He was given medication but no information or advice. Our doctor just keeps scratching his head and saying he doesn’t know what’s wrong with him! Has your husband lost weight? Mine has lost 32 lbs in a year. Thank you so much for sharing as our friends don’t understand why we can’t go out and turn down invitations. I’m now waiting for a hip replacement which will add to the complications!

  • By Sesimbra

    Hello Sussie,

    I note your message was sent at 3.02 am – not good! I hope you are not too depressed and that is affecting your sleep. I don’t sleep well either but a good night’s sleep really improves my mood!

    Where do you live? It is hard getting advice where we live. Communication between the neurologist at the clinic my husband attends about every seven months and our GP is very slow. We are in fact changing hospital clinics and it was a letter from the new neurologist that gave the instruction to drink coffee. If things don’t improve I think I might try and find a private neurologist. At the moment we haven’t even been given an appointment although he is due one in February. We live in the UK.

    One thing that concerns me is that despite the long time since the original diagnosis no other health checks have been carried out until just recently, I am particularly concerned about his heart because of his sedentary life style and his very low blood pressure, swollen feet and ankles etc. We are fortunate that so far he has not needed any other medication except PD meds (seven pills a day), but I fear that will soon change.

    My husband initially lost weight but he eats well and drip feeds chocolate so has recently put on weight. I have asked him not to eat all the sweet things, which he buys himself when he goes out on his mobility scooter, because if he develops type 2 diabetes it would be a nightmare because he doesn’t eat vegetables and eats lots of bread and cereals.

    A further up-date on the coffee drinking – we went out to tea on Sunday and he was on good form, joining in the conversation and even making jokes. Then the day before yesterday we both had a visit from a couple of old friends in the morning and went to the monthly Parkinsons Cafe in the afternoon and he was fine – until we got in the car on the way home when he went instantly to sleep and I had trouble waking him up when we got home!

    Is your husband depressed? I think mine is although he used to be very even mooded. I wonder how afraid they are too, but being male they don’t talk about it.

    Anyway, there will be lots of people around this next week, with 16 immediate family here for lunch on Sunday and four including two children staying for the weekend, so that will be a big test for us both! I do hope he can enjoy having everyone around. Lots of coffee will be brewed and drunk! I think I might take to the wine instead!

    Happy Christmas!

    • By Sussie

      Thank you for your reply and encouragement. I wrote my post this morning and I live in the UK too. I think the time might be American time.
      We knew nothing of Parkinson’s until a visit to a geriatric specialist in October who diagnosed and prescribed Madopar. He has a follow up appointment in January. It seems he ticks most of the boxes for Parkinson’s. I’m sure he is depressed but refuses treatment. Mostly he sleeps. A year ago he had radiotherapy for prostate cancer and I thought it was a direct result of this.
      It’s just the two of us Christmas Day and then family are coming on Boxing Day.
      Not a very Happy Christmas but I’m just glad he’s still around after 52 years of marriage.