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    • #21434
      Mary Beth Skylis
      Moderator

      Caregiving involves a lot of different responsibilities. Depending on the situation, you may cook meals, help to bathe the person you’re caring for, and any other number of things. Some responsibilities are more difficult than others. What has been your greatest challenge as a caregiver? How have you learned to overcome it?

    • #21653
      Marjorie Weiss
      Participant

      My greatest challenge is how PD chips away at us, a thief who eats him/us little by little. Dreams for our future disintegrate on a regular basis. He cannot hold my hand when we walk without losing his gait.  He cannot slow dance anymore as it is too much for his brain to process. Intimacy has waned. I cannot often hear him well due to the voice weakening. Etc…..

      I cope through mindfulness mediation and learning to practice gratitude for how well he really is doing after 20 years with him now just 69. It helps. I am most grateful for deep brain stimulation. I also try not to peer into the future as that can be very bleak and just speculation anyway.

    • #21656
      Marie
      Participant

      My greatest challenge has been to not give up and walk away some days. I know that may sound selfish.. but there are days when I ask myself how much more can I take? And these are when he is on his pity party days, I am going to die soon days, I can’t take this anymore days. When he refuses to try, to exercise, do for himself, act like he cannot do anything,, so I have to take a step back, breathe, talk to the dog, mutter, and pray next year I will be able to get away with my sister.. two years without a sisters getaway is not good for ones mental health!!! Thank you for listening!!!

       

      • #21670
        Marjorie Weiss
        Participant

        I fantasize about him dying and my feeling relief so I get it. Have you looked into respite care?

        • #21942
          Mary Beth Skylis
          Moderator

          Marjorie, it must be very difficult to handle what you’re going through. Have you been able to find any support for yourself and him?

    • #21655
      Barbara Ernest
      Participant

      As her husband and caregiver who infrequently left her by herself,I purchased some pendant alarm buttons that sent a signal to audible alarms in the house. But when she had a fall or more often slid off the bed when sitting while doing something, she would rarely think to use it and not because she was incapacitated. I searched the internet for a tilt type pendant that would provide a similar alert. I could not find anything.it was very frustrating since I could respond ,used it.

    • #21688
      Corrie Trattner
      Participant

      My husband passed on March 6th after 5 and 1/2 years of continual decline after we finally were able to get a diagnosis.  That doesn’t count the years of decline leading up to his having to go into rehab and then into an assisted living.  I have to agree with the person who said that Parkinson’s is a theif taking away everything bit by bit.  I remember one day standing in the parking lot after seeing the dermatologist who told us that his skin breakdown on his hands was due to the Parkinson’s screaming to the sky, “What else is this damn disease going to rob from us???!!! – even his skin!!!”  That was about 4 months before he passed.  Sometimes I wonder how I coped, but often I would pray and hum spiritual tunes to myself and sometimes sing them outloud when I was at home alone.  That seemed to help.  I don’t know if I felt relief when he passed, but I was grateful that his suffering had finally stopped.  Daily I pray that he’s now at peace and happily reunited with his brother, parents, and our first grandchild.

      When I feel less overloaded, as I’m finishing up my full time job of college teaching after 30 years to retire at the end of the month, I hope to help develop and provide services for caregivers.  There is a sore need out there for us caregivers or carepartners and I’m open to any and all suggestions.

      Thank you and blessings to you all,

      Corrie

    • #21689
      Barbara Ernest
      Participant

      My wife had Parkinson’s for over two decades but it was not until the past several years that the decline became more a drain on her quality of life. She never complained about her affliction. The falls became more frequent and some more severe than others. Her voice changed, she started losing dexterity in her hands, more balance issues. But she did not want the disease to defeat her. And in the end it did. She did not pass from the disease but a devastating fall down a flight of stairs trying to help out with a household chore. I never let her go up or down stairs without me helping her. But she was determined not to let the disease keep her fr0m doing activities that were a part of her life as a homemaker.

      • #21700
        Marjorie Weiss
        Participant

        What a great idea Corrie. I am an author and would be willing to assist you if you move toward writing a book.

        • #21973
          Corrie Trattner
          Participant

          Hi Marjorie,

          Sorry that it has taken me so long to answer.  Acutally, I just noticed your answer and gracious offer the other day.  So, my sincerest apologies.

          I hadn’t thought of writing a book because a coworker and I thought we’d write a text for one of our courses and ended up abandoning the project.  There just wasn’t enough time, and I think we undertook too much.  We had to cancel the contract after several years.

          I was considering several professional articles now that I’m retired.  However, I’d love to talk with you  about the possibilities, especailly since you are an author.  Why don’t you email me on my home email and maybe we can find a time to talk on the phone.  [email protected].

          Would that be OK?  Thanks so much,

          Corrie

        • #21974
          Corrie Trattner
          Participant

          Hi Marjorie,

          Sorry that it has taken me so long to answer.  Acutally, I just noticed your answer and gracious offer the other day.  So, my sincerest apologies.

          I hadn’t thought of writing a book because a coworker and I thought we’d write a text for one of our courses and ended up abandoning the project.  There just wasn’t enough time, and I think we undertook too much.  We had to cancel the contract after several years.

          I was considering several professional articles now that I’m retired.  However, I’d love to talk with you  about the possibilities, especailly since you are an author.  Why don’t you email me on my home email and maybe we can find a time to talk on the phone or email each other about this, so that we’re not taking up people’s time on this site.  [email protected].

          Would that be OK?  Thanks so much,

          Corrie

    • #21699
      Sandy
      Participant

      Totally agree with the person who said that Parkinson’s is a thief taking away everything bit by bit. My husband is 70 today and has known about Parkinson for 5 years. Looking back, it has been longer. His father died of Parkinson when he was 50 years old. Slowly, I’m watching how my husband struggles with his walks, day by day it is getting tougher. Even on remembering what to do. He still walks on his own, showers on good days, eats on his own (a bit messy). His speech is slower, and getting tougher to come up with the right words. Signs of Alzheimer. I prep meals, clean house, walk the dog ( my therapy), write daily notes for him, like the dishwasher is clean so leave the dirty dishes in the sink, I label snacks in refrigerator, what’s choices for lunch, etc., and do all the chores in and out of the house. I have an alarm clock to go off every time it’s time to take his pill (with labels on the pill box on which ones to be taking). He is my husband, my friend and I fear of being alone some day. Then there are days, I curse, I’m mad and feel weighted down for trying to care for everything on my own because he is incapable. I often wondered, how long will this be? How much time do I have with him? Do I keep planning vacation trips year after year or will this be the last one? Traveling is not easy but he still isn’t in a wheel chair so I started to travel with a diaper bag. I’m still working full time since I haven’t reach my age for full retirement. I still take him with me on every errand I run on weekends. I take him with me to get pedicures (cheaper than having the doctors to do it), we watch movies on Netflix and sit on the front porch. I’m thinking this will keep him alive and moving. Dog walks are too much for him. By all means, pandemic hasn’t helped. We were to travel once I retired in three more years. Mostly, I’m totally stressed but coping. I tell myself over and over, this awful Parkinson disease is not his choice. Bless his heart for not being mad at me!

      • #21701
        Marjorie Weiss
        Participant

        Have you tried Rock Steady Boxing. It has helped many with balance, gait, etc.  and in this site I read good things about mannitol and OTC sugar

        • #21702
          Sandy
          Participant

          It is a really good  thing to do when you have Parkinson. My Mother did boxing for about 2 years before she became wheelchair bound. My husband has no interests in boxing and I tried to get his brother to take him and box with him. I also think we’re too late for this form of exercise to fight Parkinson.

        • #21782
          Mary Beth Skylis
          Moderator

          Sandy, I’ve had some trouble getting my Dad motivated to exercise, too. I think that boxing is off the table because the nearest RSB is too far away. But it seems like there’s always something that’s accessible.

    • #21978
      Corrie Trattner
      Participant

      Dear Sandy,

      My heart goes out to you, as I must confess that I felt many of the same volitile emotions.  There were days when I tackeled everything and essentially tried to hold a stiff upper lip while other days I was totally overwhelmed, angry, distraught, and besides myself.  At those moments, not only did I not know what to do with myself, but thought that I wasn’t going to make one more minute.  Somehow I did, as we all do.  Essentially, we do what we have to do as best as we can.  I’m not usually a person to ask for help and often would get angry when people would tell me to be sure to take care of myself.  “They are not in this situtation and don’t understand what it’s like!” I would say to myself in a most frustrated state of mind.  Fortunately or unfortunately, the fact is that both statements are true.  Nothing like being stuck between a rock and a hard place.

      If I had some pearls of wisdom that would make everything OK, I certainly would share them with you.  However, if he is still mobile and can walk, get up and down from a chair, get in and out of a car, feed himself and take a shower, you are still way ahead of the game.  My husband loved to travel, which I had to discontinue because it became just to hard to manage him with everything being out of our routine.  In hindsight, maybe it would have been better had I hired people to travel with us, although I don’t know if that would have worked out well either.  My only suggestion, if it’s even of any value, is to try to enjoy every minute that you can whether it’s travelling or just sitting in front of the TV watching Netflix.  You’re right to keep him moving, as any kind of exercise, even if it’s unofficial, will help to keep him at his current functional level.

      Just try to remember that you really are a super-super coper and are doing a collosal job.  I hope this was helpful.  Otherwise, hit the delete button.

      Blessings and G-d be with you both,

      Corrie

      • #21986
        Sandy
        Participant

        Corrie,

        Thank you for listening. I know you heard me and totally understand where I am coming from. It is almost a year since I had lost to my mother with Parkinson at 95, right before Thanksgiving. Her Parkinson fight was more on the old age mobility with getting around. Her mind was sharp and she was a good listener, like you. I miss talking to Mom and thank you for filling my empty hole by listening. I’m sure my days will be coming soon with not being able to travel much longer, like in your situation. I’ll keep my chin up and hold a stiff upper lip and keep on moving him. Once again, thank you! Your message truly meant a lot to me. G-d bless you.

        Sandy

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