Helping Those Who Care for Parkinson's Patients
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Hello all, I hate to be a Debbie downer, but I am having a really hard time lately. I just cannot stand how much my husband has lost, it is so very tragic and unfair. I can hardly be around him lately without tearing up. My voice falters when I try to talk to him. I can't let him see or hear me be upset because it will only cause him more suffering. This profound sadness I feel set in the other night when my husband was trying to tell me something. As usual, it took several attempts before I could understand him. He was trying to say "I want to be a success." I hugged him and told him "You are." He said "Thank you" and looked so very sad. I believe he remembers all the things he used to be able to do but cannot do anymore, and I know that pains him tremendously. He has really bad apathy and that doesn't help of course, but the real issue is just how much has been stolen from him. It's impossibly unfair. |
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Hi Lurkingforacure, so sorry that you are feeling this iimense pain. Sometimes this decease shows no mercy and all we can do is try and help our loved ones feel better. It is very difficult to help them feel like their life has purpose when we are struggling to make sense of it all ourselves. All we can do is keep encouraging them so that they feel their life has pupose and they are loved. I feel your pain as I'm sure many others on this forum do too. Be kind to yourself too and try and give yourself some kind of break, living in this 'bubble' can deplete our own self worth too. Hugs |
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| I wish there was something that we all could say or do to remove your depression and anxiety. It is hard to watch those we love suffer and then slowly become someone we really donot recognize. Carl’s Mom was herself for many years, but PD changed her dramatically in her final two years of life. Watching her deteriorate was very difficult for all of us, and often it seemed she truly had no idea how much she had lost. Perhaps PD mercifully causes PWP to lose the ability to understand these changes? I don’t know, but it was wonderful to have Mom with us for the 22+ years after PD came into her life. May you find peace whenever and wherever you can. |
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I know it's hard to know why such nice guys gets this disease. Their life isn't the same and it seems they just sit around and not do much to put in the day. My husband is in his 11th year and he's not the same man. Dementia has taken things away from him too. I have been looking after him for many years and now I am to the point I can't do it anymore. I have booked 60 days at a nursing home for Respite time to give me a break and also put him on the list for Long Term. This disease takes so much from them and I know it is very hard seeing our husband be this way. I wish we could flip a switch and bring them back to their old self, but I know that's impossible. It takes a lot out of me too. I just have to take it day by day as every day it different, at least it is for me. I have help coming in day and night to dress him and PSWs come from the Alzheimer's Society for 3 days a week and he really enjoys seeing them. I hope you caregivers can get some breaks as you know you have to take care of yourself before you can't do it anymore. |