• Help-What To Do?

    Posted by Ginni on February 21, 2024 at 4:27 pm

    Hello all hard-working caregivers. I need advice, or helping ideas. My husband of 28 years was diagnosed at least 12 years ago, with slow progression. That is, until this last year or so. In the last 90 days he hasn’t gotten out of the bed, except once. He won’t do anything at all to help himself. He won’t try. He just calls from the bedroom (I sleep on the sofa) when he wants food. We are isolated. No friends. I have a kitchen-errands helper about twice a week. I rarely go out. The walls are closing in… What can a person do when the other one isn’t interested in trying???

    Shaun replied 1 month, 2 weeks ago 10 Members · 9 Replies
  • 9 Replies
  • marknicholson

    Member
    February 22, 2024 at 12:25 pm

    It just made me so very very sad when I read this. I am so sorry. I send you both all good vibes and prayers for a rapid improvement in your situation.

    • Lappe3

      Member
      February 22, 2024 at 4:12 pm

      My husband doesn’t like to do much either. I try to go to exercise 3 days a week. He does get up and sit in a chair. He does better if I get him out a few times a week. Medicare will pay for physical Therapy and it helps a little. He seems to be getting a little stronger. It is so depressing to sit and do nothing. I like to read, and I like to sit outside and visit with my neighbors. The Parkinson’s sites in areas offer a lot of things to do and I am going to try to push him to that. It is so hard on the caregiver especially if you dont give yourself a break.

  • dmcconnaughay

    Member
    February 22, 2024 at 4:09 pm

    I would suggest you contact your neurologist, or your primary care physician at the very least. It could be depression which is not uncommon, or simply needs a medication adjustment. I would also suggest that you accompany him to his appointments and sit in on them and make sure they understand what you’re seeing. This NOT something that you “just have to live with”. There are a multitude of options that will make things BETTER!

  • fakhiuddin ahmed

    Member
    February 22, 2024 at 4:26 pm

    I agree that this may be treatable. I would suggest Psychiatrist or psychologist consultation for the patient and you should take a 2 week holiday. What would happen if you fall sick….

  • violet-ori

    Member
    February 22, 2024 at 8:54 pm

    Ginni…of course your situation is unique to you but let me share my experience with my husband who rapidly declined. I did not understand that he really couldn’t do anything to help himself. We visited the neurologist and did visits with a psychiatrist but, as his disease progressed, he lost his ability to do the activities of daily life. Once I realized that it was the disease and not his fault that he was losing his abilities, I felt guilty for thinking he had some control.

    You should certainly consult the medical community to see if there is anything they can do to help, but it might just be the Parkinson’s. I pray that you can get some help in caring for him because it is a full-time job…and not an easy one.

  • kathleen-ernst

    Member
    February 22, 2024 at 8:57 pm

    My heart aches for you. I saw this post and it pulled on my heartstrings and wanted to respond. I am not a caregiver, I have Parkinson’s. Apathy and Depression can both be an issue with Parkinson’s and can be overwhelming to the patient as well as you the caretaker. I didn’t want to see a psychologist, thinking I was handling my Parkinson’s well. Fortunately for me I saw a psychologist that specializes with neurological disorders and I was able to do it by zoom so I didn’t have to take time going there and back and I could stay in the comfort of home. I was so blessed through my year of therapy and it helped so much with depression and anxiety—overcoming feeling worthlessness and being a burden as well as fear of others reactions to me because my slow processing speed really impeded me being able to easily communicate. I also took part in a group of individuals on zoom—so helpful to actually talk and meet others to actually talk/zoom about issues and that I was not alone. I read recently that less than 20% of those with Parkinson’s suffering from depression seek out any help.

    I believe Michael J Fox group has groups as well for caregivers. I don’t know if you are a person of faith but there is a group “Joni and Friends “ that deals with Disability and they have a lot of resources of churches and groups for support for those with disabilities and for caregivers. I hope this helps.

  • twok

    Member
    February 23, 2024 at 10:28 am

    i can testify that meds may need upping. as a person with pd, i am amazed how difficult it is to move when meds need adjusting…

  • Apa

    Member
    February 28, 2024 at 4:53 pm

    keep an eye on his blood pressure (measure in bed/sitting/and standing and determine if it is too low, it may be very low when upright and cause lot’s of issues as well as mentally having the insecurity and the challenge of standing and walking, etc. Meds probably need tweeking! but consider a recumbent bike. we have a lot of success with it. easy to get on and stay on and watch tv at the same time. it gets your body moving without a lot of effort and improves your well being dramatically. circulation, blood pressure, gastro, etc. I hope this may help you as these things i have experienced as well and working to overcome them.

  • Shaun

    Member
    February 29, 2024 at 4:28 pm

    I’ve posted in another discussion group; Mucuna pruriens. Check it out. We have been working with Dr Chad Oler out of Madison Wisconsin, a natural path Dr that has helped us tremendously! Total reverse of symptoms. I cannot emphasize enough how the last 8-9 months have been. Please see if he can help you!!

    http://Www.naturalpathcenter.com. It won’t hurt to talk to him and get his perspective. A few other readers here have contacted him already, as we spoke to Dr Chad during one of more recent phone calls and he has confirmed some have called. I pray all of you find some relief, as we lived it too and I know it can be overwhelming. This has worked for us and if you’re a good candidate to do this amino acid treatment, he’ll tell you. You have to be committed and make changes in your life more than likely, but it has been the best decision we ever made. You are basically preserving and protecting the remaining neurons, so they do not die off as well. Dr Chad is a chemical engineer and it all made so much more sense to me instead of pharmaceuticals that continue to wear off and have to keep adding meds and still not getting the results of a normal life. You are basically adding back in what your body is low on, naturally, to work at its optimum level. He can explain so much more on an individual level. Good luck in your journey!

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