For those who care for someone with Parkinson's disease
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How do we handle those times when our loved one wants us to do something that we know will injure us? My husband won't use a walker, and instead insists on using me as his walker whenever possible, pulling down on my arm as he walks. One day I thought he had broken my forearm. My hand has started hurting pretty badly to the point where it hurts to even try to pick up a glass. I told him I couldn't help hold him up anymore and that my hand was hurting from all the pulling and trying to keep his weight up, buy he still wants me to hold him up. He also wants me and/or our kids to pull him up out of a chair, the bed, wherever he needs help getting up. He is too heavy, and we are all way too small to be doing that. I've tried explaining that we can't do that, and why. I have resorted to pulling a heavy chair I sit in that he can use to pull himself up, but he doesn't like that. I could go on, but I know most of you know are living the same trials. I am seeing increasing requests for us to do physical things that are simply asking for injury. What do you do? |
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Lurking, You have really got a problem, he has to do things for himself. he has to use the walker or canes or crutches. Maybe install handrails along the walls he can grasp aiding his walking? I was just thinking a lot of times people have a trapeze handle over the bed for help rising. The last place I went to get a service dog had ropes hanging from ceiling by chairs and every so far throughout the house (for grabbing and aiding in getting up from sitting.) You might improve on the trapeze handle by replacing it with three rungs from a ladder this way he can walk his hands up as he rises upright helping not only rising but hand and arm strength climbing up from bed or chair. Maybe a technical high school or the lions club, elks, masons would help adapting them or installing these for you. You don't want to suffer a life long injury or your children to suffer one because he wants you to do these things to help him. He has to want to and try to help himself too. I can't really identify with this kind of behavior. I catch heck for trying to do too much which could be dangerous a "Dad stop doing that you could hurt yourself" kind of lecture (in one ear and out the other kind of lecture). I hear my dear Mothers admonition echoing daily, one of my mantras I fall back on in tough going; When G-d created man he gave him a backbone not a wishbone You want something then work for it put the effort into achieving it. But we're all different, Muhammad Ali was famous for not taking his medication. During a news piece about him his Daughter was asked how do you get him to take his medication? He was the heavy weight boxing champion of the world. What do you do you can't really force him? His daughter replied I stand behind him wrap my arms around his neck and ask Daddy do you want to move today or just sit in your chair? Then go about daily routines. Most of the time within an hour He asks for and takes his medicine. Maybe a similar approach of you've got grab bars, a walker to help but you've got to use them or else sit there. I don't know but just a couple of suggestions to think about and adapt to your situation? Good luck |
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You really need to be with him during his next physician visit. Have your physician explain the options, which never include using family members as a substitute for medical devices. Those devices, paid for by insurance generally, are wonderful tools. Along with those, put in railings and grab bars. I did and it made a huge difference. My home is not House Beautiful, but it is functional. Your spouse needs to be more independent. He needs to get up while he can. He needs to move while he can. |
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Thanks so much for the replies. You are such an inspiration, Al, and an example of how someone can have PD and still have a good attitude. I really appreciate your input. I am wondering if part of this might be the increasing selfishness I read that comes with advanced PD, and I do get that. I can see how the crappier you feel, the more inward you might turn, and the more around yourself the world revolves. Still, though, you all are right. He simply must do as much as he can for himself. I have begged, cried, screamed, threatened, for my husband to exercise more, to do more, but he just hasn't and he just won't. But he will sit in the living room and moan, or sit, slouched way over to where it looks like he is about to fall out of the chair, while the kids are trying to get homework done, study for a test, get their chores done, etc. It's almost like he wants the family to see him suffering, which is unfair to our kids. I have actually told him that I think it is selfish to refuse to exercise or do the things we have read can be helpful because that is essentially making our kids watch him decline faster than he might otherwise. How does he think the kids feel when they see him fall? How does he think they feel knowing that he could do things to help maintain function, but is choosing daily not to do those, while simultaneously asking them for help? Those are issues separate from him taking responsibility for staying as independent as he can, of course, but sure come into play when he tells our youngest to pull him out of a chair. Thanks for the tips, this disease is relentless. |
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Sorry that you are going through this. My husband also needs a lot of help. Sometimes I think he could try harder but most of the time I think it's just something his body won't do. Does he have a lift chair? It helps but in the end he still has to have help to stand. I have to help him out of bed and sometimes he just lays there and wants me to pull him up dead weight. I rented one of those trapeze and he couldn't use it, also had the pole next to his bed and that didn't work either, and the thing that goes under the mattress and has a bar, he won't use. Part of the problem is his dementia . He can't follow simple instructions. There is also a gait belt which would be a big help. It's just getting him to use all those things. My back, shoulder and hand are always hurting. Sorry I am not much help because I have similar problems. I feel bad for you that you still have kids at home. You really are doing the best you can. Some in your situation do not stay.Try to take care of yourself. |
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Lurking, Does he have a lift chair? They are not inexpensive, but probably cheaper than back surgery for you. I think you simply have to say "sorry honey, I can't do that." What would you do if he asked you to pick up the refrigerator? You wouldn't have any question in your own mind about that. You'd just say "wish I could, I know you want me to, but I can't." People with PD have trouble learning from negatives. Someting about dopamine shortages and the brain. So instead. When he says. "Pull me up." You could counter with " you want to stand up?" Him: Yes. Pull me up. You. "You could get up by using the standing pole, or the lift chair. I can't pull you up hon, though I know you want me to." Matter of fact, certain, firm. You will say no after you have a back injury, right? So say no now. My .02 VV |
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I just got my husband his third lift chair. It is a Lazy boy so it's we'll made. It does help him to stand but I still have to help him after he stands. By the way, the salesman said I can get the doctor to prescribe it, turn it and the receipt to Medicare and they should give me a bit of money back. I haven't done that yet though. |
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| Lurking, I'm so sorry you are going through this. As things are getting worse with my husband he is also having more difficulty getting up and down. I've tried to make it clear to him that I want to help him do things but the doctors have told me to make you do as much as you can by yourself. I'm finding my husband is afraid or gets confused with anything new. When I remind him to use his walker he will take it into a room but leaves it there on his return trip. He is trying to get used to wearing underwear at night but I find it laying in the floor by morning. (old ways die hard). I just purchased him the Cadillac model of a lift chair. He is having so much trouble getting used to the new control buttons that I know it's frustrating him. He will ask for a spoon at a restaurant now but he is having a hard time remembering to do things new ways. Could that be your husbands problem? There are so many fears that rear their ugly head with this disease. He reluctantly will admit them to me but it is hard. Could he be afraid of the new ways of doing things. Does it make him feel like he's losing a little bit more of himself when he uses walkers, lifts, etc. Just a though. Blessings to you. |
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Carman - thanks for the Medicare nudge. We shopped for one this weekend. Apparently it is a reimbursement, and it pays for the lift mechanism only (usually a couple hundred dollars). The remainder is out of pocket. Still not bad. As its early yet we opted to get a firmer seat couch with a more upright back, and a power assist recline. We shall see if it helps. He's having a lot of pain and stiffness after more than about twenty minutes of sitting on the old one. |
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I've said before that I believe that fear is a big part of PD. I would be so scared to lose function and know that it was only going to continue. So yes, I do think my poor husband is afraid. Afraid he will fall, afraid that today may be the last day he can do XYZ, etc. Having said that, though, that doesn't mean that the rest of the family has to do everything he wants. I too have read many places that the PWP has to do as much as he can for as long as he can, in an effort to maintain function and independence. It stinks, though, and I find myself talking more slowly and calmly to him in an effort to allay his fears. What a horrible illness PD is. |
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| I'm not sure if any of you have gone to the LSVT Big and Loud physical therapy program. The Neurologist told us about it and it really is a great program. The good thing is if your person won't do exercises with you then they just might do them in the outside therapy atmosphere. You don't have to be involved in the program if you don't want to. Medicare pays for most of it. Also using a punching bag or speed bag is good for them to get out their frustrations. My back is finally causing me great pain in the mornings from lifting, pulling and pushing my hubby up, down and around. I'm making him help himself more but I'm thinking about getting a pole for the bedside. One with the moveable bar to get him to pull himself up from a laying down position to sitting up, to standing. I will still have to lift his legs though since he just can't lift them. |
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All the programs and therapies and interventions in the world won't help unless someone is willing to do them. My husband won't try anything. Refuses to exercise. Point blank. He's doing PD on his own terms (meaning: taking the pills). All we are is along for the ride as observers and helpers. Lurking, I have immense sympathy for you in this arena. There are no good answers. It's not just that we don't know about the programs that are out there to slow things down and improve quality of life. It's that THEY don't care and are unwilling to try. It's a helpless feeling as a partner, and hard to explain to those whose spouses are actually trying things to help themselves. It's their life, after all, and they can and should have say in what they do. I just wish there was a way to explain to the rest of the world that there are no solutions for us other than to endure. |
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Michelle, I am almost relieved to hear that I am not the only one whose spouse refuses to take advantage of programs, therapies, etc. that could and most probably would help him. I could handle being the powerless spouse who cannot make her husband exercise, do Big Therapy, the Lee Silverman voice program, etc., it's our children's suffering and warped development that I am truly struggling with. My husband is making memories with them all right, just not healthy ones  Our kids will remember these times and how he treated them for the rest of their lives. They will always wonder "wasn't I worth it for daddy to make the effort to exercise just a little? to go to one class a week?" To me, that is a lousy legacy to leave your kids. Again, though, what can you do. PD sucks all the way around. I keep hoping my husband is going to wake up one day and say: "Eureka! I've been going about this all wrong! Sign me up for some exercise classes and let me ask the kids about their lives!" Hope springs eternal, and it keeps me going 
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| You know, I guess I'm just not the right kind of person to make comments on this sight. I've got my hands full with my husband just like all of you but I guess I am lucky that my husband will, and sometimes not happy about it, go to the doctor ordered therapies. I was giving some suggestions only, living in a small town there weren't any programs available until a year ago. Sorry if I annoyed you with my information. |
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flowers, I think there are many people who never post on this site but who read and learn. Comments like yours give them information and hope. Please don't feel that the variety of our experiences invalidates yours. I have certainly, at times, posted about my husband's success with LSVT Big. It has made a huge difference for him. Still, I know that some times posting about what doesn't work is all that keeps us from just quietly going insane. I don't think anyone was annoyed with you. I know that having a husband who won't even try those therapies would make me very annoyed with HIM. Please don't go away flowers, and don't stop speaking your piece. All of our experiences count, and are welcome. VV |
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Flowers, I don't think anyone was annoyed either! I think it's great that some PWP are proactive in trying to deal with PD, truly. I just wish my guy were in that camp! Since he's not, though, it sure is comforting to hear that I am not alone in the situation. No one should ever feel that they cannot post what they feel or think on this forum, IMHO. It is one of the few places where we all understand. Please don't leave, or inhibit your posts-you never know who you might help (including yourself)! Plus, we all feel better when we post, whether it is to vent frustrations or offer advice. The more voices we have on this board, the more support we can offer one another. And Lordy knows, we need all we can get Please continue to gift us with your insights and experiences
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Sorry, Flowers. I AM annoyed with him. This is where a well placed "it wasn't you, it was me" might be appropriate. I didn't mean to downplay your suggestions. At the same time, my statement was true: it IS hard to explain why we are outliers. I know I end up feeling like it's somehow my fault that he doesn't comply...like I should somehow be trying harder, or finding the right program/therapy/vitamin/whatever. If I sound hurt or frustrated, I AM! But not with you. ((Hugs)) I think those of us in the "my husband won't choose to" boat sometimes just end up feeling very helpless. I spend much of my time with the anguish of seeing him so stiff and in pain gnawing away at my insides. And I can do NOTHING. He doesn't want to be touched, or helped, or anything besides left alone in his pain and anger. I love him more than anything in the world and would give anything to fix even one tiny part, but aside from asking the doctor for more pills, there are no solutions. To be honest, I'm envious of those whose partners don't choose to secede from life. And the same day I made my last post, Facebook served me up with a memory from five years ago of us putting the finishing touches on our new deck, sunroom and pergola, all of which he and I built together. I went to him to ask him to try the boxing program Jane suggested, and got shot down. Then I said I'd like to find a small home improvement project (nothing near as large as the others) that we could work on together again, just taking it slowly, and was told he just didn't have the energy for that anymore and didn't want to try. I thought maybe it was just organized exercise he objected to, but it seems not. At the same time that I wholly understand and sympathize that we have lost ground in the last five years, I know we aren't to the "nothing but sitting on the couch" stage unless we choose to be. I want him to be with me while he's here with me....that's all. I'm so, so glad for all of you if your spouses are trying. Hang on to being able to move while you still can. |
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Flowers, first, thank you for suggesting the Rock Steady...he plans on going as soon as we get our daughter moved...long story...she and Eric are no longer together after 22 years, so we are dealing with the pain our six year old grandson is tackling...Enough of that, everyone has problems... Flowers, don't go if the board helps you even if only from time to time. My Carl is still highly motivated and high functioning, too, so we are similar in facing PD as you...but, MyLove/Michelle and I are very good friends away from here, too. It was because *I* read YOUR post that I was able to share the Rock Steady boxing with her, although her Ben wasn't interested. Still, thank you from Carl...we are looking forward to going! That said, never underestimate the power of your posts...anyone's posts. I, too, have been discouraged more than once with what I perceived as negativity on the board...HOWEVEVER, I have come to realize that caregivers here come for different reasons and bring varied experiences, both positive and negative... We need to be able to have it both ways... The optimists AND those who are negative and or sad....because what works for one, may not work for another. I also now realize that even with the best intentions of the most love we have, when someone gives in to depression or gives up on PD, somehow we must accept that, most of all, this attitude in NO way is directed at us. Some people are fighters, some are not. Some will fight to the end while some want to give in and let go. Perhaps what I want to say is that some of us cannot change our lives when our PWP makes his decision as to how to live, any more than some of us cannot accept a decision *we* would not make. Stay, Flowers, come back...I am listening...as are others...Hugs, Jane |
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| Flowers/Marilyn! Where in Northern California?!?!? We have a home in McKinleyville we rent out near the university. We also are now living in Cloverdale, 30 miles north of Santa Rosa! Small world! If you need an ear, my personal email is jane_coffey at Comcast dot net I tried to type it out correctly, but wasn't allowed, sorry...hope you can figure that out! |
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Thank all of you for your kind and thoughtful,encouraging responses. I try so hard to stay positive and search and search for anything that might keep my honey going. It doesn't always work and somedays he doesn't want to do anything. I sometimes am so discouraged I don't know if I can go on another minute. I tell myself that it's not about me it's about what my honey has to endure. My back has taken such a beating this last week that I just can't hardly stand up at times. I can't see how I'm going to be able to help him up and down and it's just killing me emotionally. I'm hurting and so crabby that I just cry and don't know what in the world we will do if I can't help him. He can't quite understand what I'm going through and when he needs to get up to pee he gets upset that I can't help lift him up to and from the bed. I've told him I can't do it, he can stand up on his own but is so dependent on me. Our adult son said to wake him up during the night and he would lift him up and get him back to bed. Sounds good but in reality I don't know how that will work. I'm going to make a doctors appt in the morning and I pray that I don't have anything serious going on with my back. I think it's just muscle strain because my back doesn't hurt when I'm laying down. I wish I had something to look forward to, I'm so depressed and such an emotional wreck. Jane, we live in Anderson just south of Redding. Thank you for your email. |