For those who care for someone with Parkinson's disease
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| Are there other caregiver boards? Anything anyone can recommend? I'm floundering out here. |
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| What's wrong, Michelle? How can we help? Sorry, been very sick with the flu...Carl had it for ten days...this is day 7 for me! And we GOT the flu shot! |
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My love, There are two good Facebook groups. Both are private, so that you mush search the then ask to join. One is called Caregivers' of Parkinson's (with the apostrophe in the wrong place). The other is Parkinson's Better Halves. Try those? VV |
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| Thank you! I need someplace else to ask a couple of sensitive questions. |
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Well no one really knows you so we won't judge if you ask a sensitive questions. The only other website I used to go to is Daily Strength . We might be more qualified to help you here. Maybe others have the same problems you have so try us if you wish. |
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To clarify - my husband comes here occasionally, and is friends with other PWPs on this board, so it's not the appropriate place to ask some questions. My other issue is that he's definitely in a far different place than other spouses on this board, so I'm not sure our situations apply as readily. I see far more traditional caregivers here, and we are just not there yet. I will ask this - where do you go to find other people like this - not old and sick/debilitated, young enough to do things, but not so young/able that you can't keep up? He's not ready for the Senior Center, but we can't travel or hike or bike or anything. So what's left? |
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Michelle, I think you and Ben need to have a very serious "come to Jesus" talk, as my Grandma used to call any extremely candid discussion! I know you have talked about a great many issues, including death, but maybe it is time to sit down, no distractions, and ask the hard questions. You may not like the answers, but at least you will both say how you feel. I think we are both at the same "stage" of PD; we both have said many times how highly functioning our husbands are...and, we know how lucky we are. But, you are right...we face a great many changes to our lives, but are not ready for the Senior Center. Right now, we are remodeling and painting and reupholstering a hutch, table and six chairs for our niece and nephew. Monday, Carl has to drive me up and back to my eye injections (35 miles each way), then he meets the contractor at the planning dept. to walk through the backyard pool and remodeling project! Yet, this is a HUGE slowdown of activities for him...normally, we would be shopping or traveling, too!... I guess what you are asking is what I have thought, too...we are hitting PD head on, but so far we haven't had to face many of the problems other caregivers here face. So, I guess it means until things progress more rapidly, we just consider ourselves "lucky" and do our best. Personally, I have learned a lot from the caregivers here, and have tried to share information we gleaned from 22+ years facing PD with Carl's mom. However, if he were online in the forum, I could easily see that I would no longer be comfortable here. You are stuck in the middle here, so I wish you luck finding a place where you can vent, cry, or simply find new folks to listen. You always have us. Love to both of you! |
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Mylove, I'm not familiar with any of the following groups and do not know if one or another might be good for your situation. Hoping you will still be here as well. An article at MJF site gives this link: https://www.caring.com/support-groups Someone added a comment: "The Well Spouse Association provides peer support to those caring for a chronically ill spouse/partner. Our website is www.wellspouse.org . We're on Facebook as well, and have a Facebook group (Spousal Caregivers - Well Spouse Association). I also belong to the CARE listserv, which is for all PD caregivers." http://www.pdf.org/en/winter09_caregiver_corner Best wishes and prayers. |
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I feel like this board does a great job at supporting physical challenges, but no one does a great job at helping patients and spouses with the emotional changes and challenges. It truly isn't a matter of pulling up our bootstraps... the world does a really bad job of acknowledging out loud that depression is a symptom of dopamine loss. Yes - we are lucky, in that he's still mobile and highly functioning. But I think one of the cruelest things about young onset is that they suffer longer. It steals more, and at a time when they're able to comprehend it. We have seen FOUR different counselors, and none of them will acknowledge the elephant in the room. "Oh, retirement will be SO much fun!!! Aren't you LUCKY!" Hell no. No. Bored? Yes. Despondent? Yes. Frustrated? Isolated? Double yes. He's mentally young and vital enough that it's cruel to send him to PD groups or the Senior Center or relegate him to doing jigsaw puzzles in the house (it's been too cold and wet for garage work this winter). And we can't keep up with the other age brackets, who seem to all be into physical activity, and it's embarrassing to be the disabled guy. I have no one in our position that I can ask for solutions. He's angry and hurting, and I can't cheerlead when I have no answers. I can't say "it'll all be ok" when we both know it's not. You can only stiff upper lip and damn the torpedoes for so long. |
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Thank you, everyone for other resource suggestions. I'm hoping I can find a place with a few more "not-quite-caregivers but still coping with a family members disease" so that I can pick their brain! You guys do a great job at the stages where you are. I'm hoping to just get through this gracefully so I can be great at that part, too. |
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| Michelle, it might be worth it to contact the American Parkinson's Disease Association. They do a lot of Young on set stuff. But that said Ben, Carl and Myself are attaining the age where while We were young onset we aged past that range. Speak to someone there to see if they have any support groups in your area geared toward us? If there are support groups in your area call them and ask about the ages of attendees to see if it fits. If you encounter any jaw droppers in this come on back and tell Us Early on in this disease I didn't care to attend a group, then I decided to try one so I called one group up the woman who answered seemed puzzled when I asked about the support group, she asked where I got the number? I said in the paper, she said oh I didn't know it was still in there then She said I sounded kind of young I told her I was 38 she sounded distressed then said well I don't know any other way to say it but the group no longer meets they all died! That put me in a funk for awhile. Then a few years later one started up and there were around 10 regular attendees and we were all within a couple of years of age with each other. I dropped out for awhile because transportation to and from was getting to be a mess and then when I started to attend a couple years ago I was the only one left the others had passed away! So one never knows what they will encounter but if I were looking I'd try the A.P.D.A firdt hope it helps |
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Thanks, Al. I'm looking there too. He's been to the only PD group in our area, and they're all in their 80s. He isn't much interested in that sort of group. What he really needs is to find a friend or two to hang out with. The last thing in the world he needs at this juncture is to be surrounded with people passing away or those who are totally incapacitated. It's me that's looking for a support group. |
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| Michelle, I signed up for the Parkinson's Better Halves on Facebook...they are putting me in the second group, as they are limited to 500...I signed up yesterday and the link will be active tonight...will come back to let you all know how it goes. I don't plan on leaving this board, either. |
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| Michelle, I often share all the bad stuff my husband goes through, but (fingers crossed) he has not fallen all week, and is out in the garage rebuilding the starter on one of our antique cars. He is as sharp as a tack....often beats us all at Scrabble, and we are all rated advanced players. Biggest issue....when to rest and when to work. I liked the idea Al had about calling the organization, and I think I will check out the FB page too. But I am not leaving here as I have picked up so many good tips. And it is still a place to vent. My husband prefers the Classic Cadillac forum, and Jay Leno's Garage, so I can whine all I want and he is no wiser to that. |
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| I know I've said this before but at times I need reminding myself. I need to go look at the fridge or in a desk drawer, dig out the steps of grieving, reread them. We can get caught up in the struggle of life. The struggle of even a little loss or function. The facing a uncertain future, of plans We had. Of canceling out last minute. The madness of living according to medicine doses. A loss of intimacy, self doubts of being able to handle the future. The steps of grieving doesn't tell you how to handle these crises. But they can calm us down remind us it is normal for us, caregivers and patients that what we are feeling is a normal reaction. We are not alone with our thoughts and feelings others have then too. We in the course of this disease need to revisit the stages of grieving often as the disease progresses. It's not a cure all but it may comfort knowing it's a normal reaction we've had to conceding more to this damn disease |
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| Thanks, Al. Well said. It's a series of small mournings. Just when you get through with one and adjust to the new normal, comes another loss. And it's compounded by the fact that depression is a primary PD symptom, particularly for those who got younger onset vs older onset. There is grief on both sides. As a couple, we acknowledge that rather than pretend it will go away and that everything is always all right. Sometimes it isn't right to say "it could be worse", because for now, worse is reality compared to yesterday, and that has to be processed before you can move on. |