Helping Those Who Care for Parkinson's Patients
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Does your PWP genuinely appreciate everything you do for them? Mine never (I hate to use the word never) but..........he never says "I really appreciate everything you do for me. ---- I don't know what I would do without you. --- I wish I felt better so I could help you around the house." Things like that that I desperately need to hear. Oh sure he says thanks when I button his shirt, tie his shoes, etc, etc, etc...........but that about all I get. Am I expecting too much? Sorry for the rant but I'm feeling down today. I guess my Giveadamns busted! |
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| Although there are times I don't feel very appreciated, I will say that my hubby with PD regularly thanks me, as in "I really couldn't do this without you" or "Thank you honey, I wish I wasn't such a burden." The other upside is his two sisters who he is close to have expressed how much they appreciate the good care I give their brother. The acknowledgement means so much. Sorry you feel so down today. We all need a good rant now and again. ~hugs~ |
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I have to say that my HWP says he doesn’t know where he would beeithout me. He stopped me in my tracks yesterday when he told me how I am more important to him than anyone else and he loves me so much. It meant the world to hear but I also realized how long it has been since he said things quite loke that to me and how I may not hear that from him again. I am very lucky that he is so appreciative. You should not be hard on yourself for feeling the need to hear his appreciation and love. You have a right to your own feelings. He may not be able to rise to the occasion and he may never have been the kind of person to say such things but that does not change the fact that you deserve to hear those words. Be proud of your depth of heart. You can only make sure you offer him the tenderness you will want to look back on. So glad you reached out. I appreciate you and can only imagine how hard it is to do without his thankfulness. NoMatterWhat |
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Mom does sometimes say something appreciative, but most of the time it feels like she just takes me for granted. I know that's mostly the disease, but it does hurt when she just assumes I have to do everything that pops into her head. ... Years ago (around 2015) when she was having withdrawal issues from Lyrica and other meds, she kept saying how sorry she was I was stuck with her, this isn't how she wanted my life to turn out, etc, etc. When she was REALLY acting out dad would tell her, "Do you want him to leave?", thinking that the suggestion of me leaving would scare her into behaving, but she was clearly in an altered state from the withdrawals and med issues, none of which were her fault. And I COULDN'T leave, because dad couldn't deal with the situation, and her meds and various doctors had become so complicated that I had to be half doctor and half lawyer to navigate the situation. ... Dad passed away almost two years ago now, and a couple of months afterward, when I was putting her in bed one night, she asked me, "Do you really want to stay here with me like this?" I said yes, and it was true, and it's still true now, but I do imagine what it would be like to get away for more than my 8 hour work day (or an hour to the grocery store, where I find myself lingering in an aisle just to have "me" time). You never get to "call in sick" to caregiving. My biggest fear is becoming sick or injured, because there is no one to pick up my slack. We got an estate planning attorney last summer, and he suggested I put someone else on the power of attorney in case I passed before mom. There were only two of my cousins that might qualify, but they didn't seem interested and still haven't gotten back to us. I'm just writing up some emergency plans and numbers and hoping for the best. |
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| Thanks everyone for the encouraging words. It means a lot to me. I think it comes down to him not really coming to terms with this terrible ,awful stinken disease. |
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I've been trying to write a holiday letter to go in family Christmas cards, but after writing up a page, I wonder if anyone is actually going to want to hear about this stuff. New meds? Confusion? Hallucinations? Doctor's appointments? I feel like either no one is really going to care about all these details, or they are going to think I'm weird for including them (but what else is there to include? this is our entire life). I want to think someone might want to know how she's actually doing... and then I think telling them will only worry them, or make someone question everything I'm doing because they are misunderstanding what I'm saying, misunderstanding the disease, whatever. ... Dad's been gone almost two years now. He had his issues and couldn't deal with mom alone, but at least I could talk to him and he knew what it was like taking care of her, what her disease was like day in and day out, etc. We were "in it together". Now I feel like putting all these details in the holiday letter is just me trying to feel like someone else in the family is "in it" with us. But I don't think they are. Everyone is either too old or lives too far away. I have many cousins that are my age--more or less 50. But they all have their own lives and spouses and kids. They all love mom, but they love the memory of how she used to be. The disease is my problem, and although I do get a little empathy from a couple, that's as far as it goes. ... I'll probably send it out anyway. Let them think I'm weird. |
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Well, Greyeyed, the letter will tell them what has been going on with you and your mother. Maybe it will be the message some of them need to hear-to understand you could use a caring phone call or visit, to help them realize how lucky they are, or perhaps because it my help them to share their own reality that is as difficult as the one you and your MWP are living. Good for you for pressing on with your holiday letters and celebrating however you feel moved to do so. I will be thinking of all of you as Christmas ( or whatever it is that you celebrate) and New Year’s draws closer. Here’s to making memories and finding the true meaning of the holiday season, whatever it may mean to you. Cheers- NoMatterWhat |
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I agree with NMW, Greyed, go ahead and write your letter. Others need to understand what you're facing every day. Wishing ALL of you a Blessed day today and every day! |