For those who care for someone with Parkinson's disease
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Written to my fellow female caregivers: As we approach Easter weekend, I want to wish you all happiness and peace. I wish none of us were on this journey, but I know that our husbands wish they were not on it either. No one would wish this life on anyone else. It becomes increasingly hard to find happiness when we know our PWP is losing the battle. But, we must try, if not for them, for ourselves. *We* need to stay positive for ourselves, for our life, for the lives of our children and families. *We* need to be patient with ourselves so we can be patient with our PWP. *We* need to hold on to hope and the love that brought us together. Being a caregiver is often times a solitary, lonely life. But, it can also be loving, fulfilling, and joyful when we learn that what we do for our PWP fills his life as no one else can. We came into this relationship full of hope for a future together and now we see it in a different way...it is not the future for which we planned and dreamed. But, remember, it isn't for them, either. This man we loved once is still the man we love...it is the PD we hate, not him. It is the PD that is robbing us of our plans and dreams, not him. We must learn to be kind, be loving in the worst of times, so that we can relax and remember the best of times. Choose life and love. Fill your days with hope. If not hope for your PWP, hope that a cure will be found for others...and soon...so that no one else has to endure all we do now or will soon have to endure. My PWP is a fine example of someone who will/is fighting PD every step of the way. And, fight he will, as long as PD does not get the upper hand...and when it does, I will fight with and for him...as he would for me. So, again, I wish for you the best possible weekend knowing that your PWP would wish you the same if he could. He loves you. You know that...*I* am SURE of that! Happy Easter!!! |
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| Jane, what you said is beautiful and uplifting. Thank you for reminding me of the positive things. You and your hubby have a wonderful Easter. |
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| Jane, you made me smile. |
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Very true, thank you for this
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| And happy Easter from Australia. Easter Saturday today . Will spend Easter Sunday with my family . Have not heard from his ! I just want to agree with what has been written . I/ we are just starting on this journey which is going down hill pretty fast and I do find it difficult most days. My PWP will do nothing to help himself in a physical sense . No exercise . Nor do things like mind games. He just watches TV or looks up useless things on his iPad all day . And that's when he is not sleeping . Currently sleeps 10 hours at nite , 2-3 hours after lunch and will doze again after tea. He is on anti depressants , has had sleep apnea tests done.. It's just him . I find it so hard . If I was given this dx I would fight tooth and nail to hold it off for as long as I could . And it's hard to watch him just sit . I wish he would fight if only for me . I'm 65 . The future scares the beejesus out of me. When I get very down I try to remember what I great husband he has been to me . We met 16 years ago and married 10 years. I have had numerous surgeries and have multiple health issues. 6 years ago I was dx with breast cancer, had mastectomy , and chemo . It was hell on earth . My husband did not take a backward step . He was beside me every single test/ operation/ miserable day and nite during that time and now I think this my turn to repay him . I only hope my health will allow me to keep him at home for as long as possible . But we are talking about the what ifs . We always talked about him being my carer as we got older . Little did we know what was In store for us . I guess that is the same story for each of us in one way or another . Lynne |
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Happy Easter to All. We will see our family tomorrow but usually it is just myself and my PWP. No calls or visits, I think our children consider out of sight, out of mind, they don't want to deal with it, and knowing how selfish their dad has been over the years, it may be a little easier for them. I was reading Lynne's post and thinking how alike our PWP's are but yet so different. My husband won't do anything to help himself either, mostly sits and wallows in his self pity. I can't imagine how it is for him but I do know how it is for me. My husband has never been a devoted husband, I have health issues too but he has always been so wrapped up in himself that he didn't want to deal with me, so I learned to just fight it on my own. Trying never to let it touch him. When our son and daughter were young, he moved out, left us to have an affair with a person I thought was my friend, she also attended church with us, our kids played together. There were a couple of others also. He had an awakening and we sought help with our marriage and went from there. I decided to keep our family together. He is so needy now and demands my every minute and it is so difficult especially knowing how selfish he has been with his time over the years. Just in the last couple of years I ask him to ride to choir practice with me on winter nights since I would drive 20 miles through a rural area and he had nothing pressing to do, but, since it wasn't something he wanted to do, he refused so I would go alone. (Can't leave him to go at all now). It has been that way throughout our marriage. I am telling you this so you will know how very difficult it is for me, you know how hard it is for you under circumstances different from my own. His neuro said to think about placing him but he would never go without a fight. He would continue for me to give him total care regardless of what it is doing to my health. I could go on and on. Sorry for rambling, but after reading my post you may think your situation is not quite as bad after all.. |
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| Oh Martha I do feel for you and agree your life is much worse than mine at present but knowing what is ahead is both a good thing and and a scary thing . I know you are obviously further along and life must really suck for you with what seems like little happening to help/support you . But scary for me is knowing that's going to be my path sooner than later !!!! Today's discussion was me telling him no you can't wear the same clothes for 3 days!!! Over my dead body are you going out in your smelly gardening clothes . It's a little nothing thing I know but up until 3 months ago he showered and clean clothes every single day of his adult life ! So 50 years of one behaviour going out the door real quick 😀 |