For those who care for someone with Parkinson's disease
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Sometimes I just feel so sad. I’m watching a vibrant, active, outgoing man decline. We used to hike, bike, do so many things together. I recently retired so I could spend more time with him. It has been an eye opener on just what he can’t do anymore. Or if he can do it, how long it takes him to do it. I don’t mind helping him. I’m here for him. I am just so sad… for him, for me. I want to sit and just cry for a week or so, but I don’t. I just keep it all inside. If I cry, it upsets my husband and his symptoms get worse. Little things he can’t do. Making a phone call is a challenge - he double clicks the numbers. Opening a pop can - for some reason he can’t get his finger under the tab to lift it. He had lost so much strength, he has almost no balance. He tries to do things that he used to do without thinking and just can’t. I have been asking if he wants my help - he gets upset and the old male ego gets hurt. Sorry for the rambling, I know he is still so much better than others with PD, but it doesn’t lessen the sadness that I feel. Sad for the retirement that I thought we would have together. I’m 66 but very active and “young” for my age. I am still ready to go go go and I’m throttling myself. Walking slower, slowing my pace to more closely match his. I’m taking time to hold his hand, do things with and for him, letting him know how much I love him. I’ve started taking walks/hikes when he takes a nap in the afternoon. It gives me time to be active and to clear my mind. Sorry for this long post but I’m struggling with this overwhelming sadness for everything that I’ve lost. I feel guilty because he has lost so much more dealing with this horrible disease. |
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Bless your heart SparkyGal we all know how you feel.. The best thing to do is what you are already doing - find time for yourself doing what you like on your own or spending time with family or friends. See if you can find a support group in your area so you can talk to others who are going through the same thing. Remember you can come on this forum any time you want just to vent. I'm not even sure how I found this forum in the first place but I'm sure glad I did. It has been more help than anything! |
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I think you put it into words so well, SG. My husband used to be a Boy Scout leader and would go with the boys on all kinds of hikes and adventures. We often talked about after retirement when he would be able to be more active with the troop and do some really cool stuff with the boys - all too much for him now. Instead he spends most of his time watching tv- but then sometimes he gets confused how the remote works and can’t watch his shows. I can’t always figure it out either - he was always the tech guy and I never cared about that so never bothered to figure out the complicated TV set up he has. I feel so bad that I can’t help. Of course it’s worse for them but I feel sad for me, too. I’m only 53, but for a long time I’ve wanted to go back to school and work on a PhD but then I wonder, what’s the point if I have to retire and look after him in the next few years? All that time and energy and I’ll never get to use it? It’s hard to imagine we’ll never go camping again- we used to backpack in the coastal mountains all the time. And most of all, he has always been my rock, the one I could bring my problems to when I got overwhelmed and he would say, “we’ve got this.” Now when a problem comes up - the house needs a new roof, the car needs repair, we need to plan a trip, decisions on finances need to be made, anything - it’s all on me. It’s lonely. Anyway, I’m holding you in my thoughts and sending you peace. I’m glad you’re finding some time to walk and do something that’s for you. We absolutely have to do that or there won’t be anything left to care for others. ((Hugs)). |
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Before hubby and I got married (almost 59 years ago) we met with our minister who told us "People think marriage is 50/50 but my advice to you is if each of you gives more than 50 percent, you'll always meet in the middle." We've been following that advice for all this time and that's why our marriage has outlasted al lot of other friends and relatives. However lately it feels more like 90/10 with me giving 90%. But I'm doing the best I can and I appreciate knowing others are going through the same. |
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| Just wanted to add my two cents and hope it helps. As hard as it is and I truly know and feel what you are feeling, you will never regret all that you are doing to help your loved one. It is truly sacred. |
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| Thank you Checkmate. That helps my way of thinking. |
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Thanks for the kind words and encouragement. Yesterday was another first. I had to help dress him. Get his legs in his shorts, pulling his shirt down (he got it caught half way down his back) and straighten it. Then put his shoes on and tied them for him. He said “I can’t even dress myself anymore, I’m like a three year old” I looked him in the eye and said, “wouldn’t you do this for me if the shoe were on the other foot? I know you would! I’m here for you.” And I kissed him. He smiled and said “you have to drive tonight too.” We went to an art show and he used his walker making many stops to sit and chat with the artists. He had such a good time. My heart is still sad but I’m grateful for the things we can still do together. I’m grateful for this forum too to share the ups and downs of this journey. |
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When my husband started having difficulties dressing himself, I went out and bought a lot of elastic waist shorts and simple tshirts, and socks that he didn't have to pull up past his ankles. Everything was pull-on and pull-over, and super simple to get on and off. This allowed him to dress himself for a little longer Eventually he needed my help with those too, but it bought him a little more independence for a little longer. I love how you responded to your husband, in such a loving and supportive way. I'm sure that helped ease his anxiety and brought him immense comfort. We may not be able to fix their Parkinson's, but we can remind them that they are loved. |
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I am with you, SG. Sometimes the sadness is so pervasive that all I want to do is cry myself to sleep. Watching my HWP slowly decline and the lives we envisioned simply erode is so depressing. Walks, music, talks with supportive and understanding friends or family or even a therapist all help give needed relief for a while. The sadness eventually returns though and sometimes I wonder if I will ever feel like my old self again. This forum has been extremely helpful to me also and I am so thankful for it. From the bottom of my heart, I wish you all moments of true happiness in the near future. |
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| Hello everyone, I have hardly any time to get on here and write like I would love to do. I feel ALL of your pain and identify with so much of your issues. My DH (dear husband) was diagnosed way back in ‘12 but had had it for at least 2 yrs but now he is losing alot of weight. He is 5’9 and used to be 207 at heaviest but now he is 159 or less. I was shocked to see this. I think maybe it’s the culmination of the loss of the ability to chew well and the loss of interest in food. I still give him his desserts that he loves and he has no diabetes issues so the doc said go ahead. I feel the sadness of Sparky’s Gal and others all the time but feel so busy taking care of him that I don’t dwell on it and someday it will hit me very hard. Seeing all the loss of things he could do before just kills me inside but I can’t show it. Lastly, I finally took advice and did something for me….went to visit family for the first time in ages. It went great and it did give me a much needed break. I went to a niece’s wedding out of town with my brother and DH stayed home & did okay. He didn’t want help. I left a list of all the phone numbers he could use if needed. I had the dog boarded so he didn’t have to walk him. I was so relieved it all worked out but, little does my family know, I probably won’t be able to do that again. Now brother wants to do more things with me. It is getting scarier for all of us so we need to be there for each other. This board helps me SO much. I feel for all of you and I am praying for all of us. Think positively and take it one day at a time. Deep breaths. It’s so much to handle…at least we aren’t alone. Oh, many at the wedding didn’t even acknowledge what I am going thru. They cannot relate and have no idea what to say. Some were more sensitized to my situation than others. It is what it is. |
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DaytoDay, I am so glad to know that you were able to attend the out of town wedding even if some of them cannot understand what you are going through. I am like you and feel that this forum is so very helpful to me. When I feel the worst I know that you all will understand, have likely been through it or I can at least ask for help and advice. My lovely husband seems to have taken another step further into confusion and responses which leave me sure that the disease is progressing while we do our best to love and care fir each other. I had mentioned that I fell and am struggling with prolonged concussion symptoms which have left me unable to care for him as I would have. I cannot drive or hardly cook anything at all. I finally went to a small grocery store with him today, 6 months since my injury and it really did me in. PD is scary enough but I struggle to keep my chin up now that I am racing to get better faster than he declines so that we can manage. I think of all of you as my friends and I need you. You are all so strong as you handle the issues you relate in this forum. You are so close to it that you cannot see what strong souls you are. I continue to read and care about your hardships. I understand and appreciate that you share such personal feelings. Where else can we be so honest about our own feelings? The ones of disappointment, exhaustion, frustration, anger, doubt and fear? Sometimes you just need to know someone else can identify. NoMatterWhat |
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NoMatterWhat…after reading your response I am worried about you! I know you fell a while back and received a concussion but I didn’t know you are still dealing with the repercussions of that. Do you have someone who assists both you and your husband? It sounds like you two could use some home health care workers helping you. I know it’s not an easy thing to decide that you want to bring in strangers but if you check them out as much as possible it could work. I have heard of one recently….Care.com. They supposedly check out everyone that works for them. I myself have been holding off on this service but I know sooner or later it will be inevitable and I dread it. I just pray I will somehow meet an “angel” type who my mother in law was lucky enough to hire. She was incredible and if I could find someone like that I’d be so relieved & thrilled. DH is very depressed today and he is just eating and sleeping constantly. Not doing good. To the others on the thread, PDNewbie..you are trying so hard to be such a good caregiver for your DH. And YOU ARE!! You sound a bit overwhelmed just like all of us were at first. There’s really no way to prepare for the emotional ups and downs you will experience. Just handle one thing at a time; pace yourself and don’t over burden yourself. Remember, you’re in this for the long haul and it can be VERY long for some of us. Your health is so important and actually, must come first, so that u can continue to help him. Sparkysgal….we all feel your sadness and believe me, we SHARE IT. I’M 65 now but I also feel pretty good and I just wish I could do more, like you. This is the life we mourn…his and ours. DH is losing so many of his abilities and I can hardly stand to see it. We go thru so much private pain over this. Sharing helps. So hard to witness capable people losing their quality of life. Just know we are there with you. Lurkingforacure….you are SO right about reminding them that they are loved. It’s so hard for us to imagine what they are feeling and our kindness means the world to them. You are such a special caregiver. (As are so many others on here). poollady…I loved what you said about how to be successful in marriage and how, lately, u feel like you’re giving 90% most of the time and that is exactly how we all feel as our PWP get more and more impaired. It is so hard to witness…tears us up inside and yet we have to be so strong. Checkmate….what you said about how what we’re doing as being sacred…I love that!! That is what I have to keep in mind because I totally feel that puts our head in such a good space to carry on. Thank you! Junipersage…..loved what u said about doing all of those things w your DH: camping, back packing, hiking…we used to do all of those things too and I miss it so much!! There’s one hike we took in Sedona that we still talk about and he misses traveling so much just like me. He can’t do it now and he feels guilty that he is keeping me from living the way he knows I would want but that’s life. We have to accept it. Maybe someday I can make it to Europe again but I keep it in perspective. Have to stay focused for now. Hugs to all of you. |
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Having a low day and finding your beautiful words helps so much. My oldest daughter and her husband are close by and offer to help frequently-don’t know where we would be without them-but I hesitate to ask for help. I had to be self-sufficient growing up and asking for help is not in my nature. I hear you and am making a list to review with my daughter so she knows how much help we really need. So much I would like to say but since I am having so much trouble I will just say ‘Thank You’ -for letting me say how very sad I am today-for seeing that I am struggling-for responding to each other in this thread with caring words I wish I could function well enough to say too. I am here, appreciating all of you. NoMatterWhat |
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| You are a ROCK NoMatterWhat! Nothing but admiration for you. God Bless you and your family. |
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Thank you DaytoDay for your kind comments. They actually brought tears to my eyes. I AM trying so hard, but I am also overwhelmed. I will do my best to just take one day at a time and not look too far ahead as our future looks bleak. NoMatterWhat, I hope the next few days will be a bit better. You have so much on your plate. I would love to hear how your conversation with your daughter goes. My 4 children have been phenomenal, but I could still use more help. Like you, I hesitate to ask because they have jobs and children and are very busy. So, I am in the process of seeking private paid help. However that is very expensive and I am not happy about having strangers in the house. |
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Yes-PoolLady’s response brought tears to my eyes. I am still having trouble following a thought through which makes even compiling a list of needs difficult but I have asked my daughter if we could have a private conversation and I will continue to try and make a list of concerns. My own injury has stolen precious time away from my husband and his care. We could have been taking advantage of his good days rather than pushing him to be the caregiver. The future sure is a mystery to me at this point. Thank you all, friends, for being a post away… NMW |