For those who care for someone with Parkinson's disease
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I give up! "UNCLE" I've tried everything in my power to help DH and it's just not working. Three different doctors including his neurologist and his orthopedic dr have all recommended physical therapy So i had him all set up to go this morning and is refusing to go! I have also purchased various devises to help him including a 360o seat for the car and he is resisting all of them expecting me to help him get up, down, in , out whatever! He fell three time in one day and woke me up at 4am cause he fell trying to go to the bathroom even though he has a urinal and a bedside commode AND a walker ABD a cane. What good are these "assisting" devises if he refuses to use them! I guess he just has to take a really bad fall and end up in the Emergency Room. Even then, they'll release him and he'll be right back to not listening to me. Sorry for the rant. I'm usually the upbeat one and an optimist but refusing PT really got to me today |
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Sending a virtual hug. My DH agrees that he needs to exercise and get some physical therapy, but won't. There is always an excuse... too tired, too hot, too cold, too early, too late... you get the idea. Also, at a loss. Thank goodness he is not falling all the time. His balance sucks, but he always uses a cane or his walker. So I guess I'm lucky from that perspective. I wish I had a good suggestion for you, but alas I don't. Feel free to come here and rant. It does help. 
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Sending hugs as well. My husband is the same. I’ve told him that if he chooses not to exercise or use his walker then the day will come when he can no longer live at home because he will need more care than I can manage. So far he hasn’t listened and so I really am trying to put a plan in place for when he will need that level of care. He is 6’3’ and i am only 5’3’, no matter how much I might want to I can’t physically lift him from the floor or transfer him to the car alone. I have no solutions either but am sending all the positive thoughts and care. |
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Thanks for the hugs you guys. He said he would call this am to set up the PT but he hasn't so far. It's really exasperating! Hang in there and we'll all pray for each other and hope things get better |
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Mom is a little better at doing her exercises, but not much. We had a physical therapist coming to the house after her DBS, so we tried to just continue the same exercises on our own. Occasionally she would do them on her own while I was at work (at least, she said she did them), but now I have to be there with her, tell her we need to do them, count off the reps, etc., or she won't do them. Occasionally she will run around cleaning things if her meds are a bit too much, and she says that counts as exercise. Her doctor said that counts as "activity", not exercise. Her exercises are designed to keep certain muscle groups strong, allow for better walking, etc. ... I can also relate to them not listening to us. For some reason when she gets in her "cleaning" mode, she always wants to clean my wi-fi router and accidentally disconnects it. She swears up and down each time she won't do it again, then does it again. I bought some roast beef and chicken to have for dad when he comes home from the hospital, and told her not to feed it to the dog this time. Ok she said. An hour later I noticed the roast beef package was open, and she can't eat that protein because it cancels her meds. I asked her if she fed some to the dog, and she said he deserved a treat, lol. (The dog was 15 pounds when we got him in December. He's now AT LEAST 21.5 pounds, but I haven't weighed him in 4 or 5 weeks. Our last dog was a Rottweiler, so mom thinks she can feed our new chihuahua (mix) the same amount of food. He still looks healthy, but he is chubby now.) ... All in all she is doing pretty well. Dad's now having heart failure issues and will be coming home with oxygen today or tomorrow (or soon after), so I am really stressing out. Luckily the school year is out Friday, but now I wonder what is in store for me over the summer. Dad's rated 100% disabled through the VA, so I might be able to get some caregiving help. I don't know what I'm going to do if he passes. Mom seems ok to be home alone for a few hours a day when school starts again next year, but things can change quickly. I paid $40/hour for a caregiver after she broke her wrist, and that was only 4 hours a day, and it was still very expensive. |
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Hi poollady, I totally emphathize with what you’re going through. You could be describing my husband. Stubborn and unable to do the things he needed to do to help himself. He refused to use his walker, fell repeatedly, and refused to follow the advice of the PT or the doctor, let alone me. He finally did have a catastrophic fall, and ended up with a severe concussion and double vision. It got to the point that he could no longer manage in our house and has now moved to an assisted living facility. It has shattered our lives. He is miserable being away from home, and, while I don’t miss the stress of hearing those thumps in the night, I miss our life together very much. And I still get calls when he doesn’t listen to the aides and falls because he didn’t ask for help at night, etc. Of course there is nothing I can do. So even now, I have many days when I want to say “I give up”, too. PD is just horrible, and destroys everyone in its path, including loved ones. I try not to think too much, just take it day by day, or hour by hour. My heart goes it to you. Catlady |
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| I gave up about 6 months ago when I, myself, was injured in a fall and could no longer take care of my husband. He started having more and more falls and doing more and more irresponsible things. And, yes, stubbornly refused to even so much as be careful. He ended up in the hospital, transferred to a nursing home and finally ended up in assisted living. Now he just vegetates even though he has choices. He has developed clinical depression which works against his good intensions with physical and speech therapy and also finds an excuse to not participate on a daily basis. I totally empathize too. This disease is just too hard for the person who has it. |
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| Well guess what? We just got back from him being evaluated at the PT center. The therapist gave him a couple of sheets with drawings of exercises he can do at home but he probably won't do them on his own anyway. But they have him set up for sessions this Weds and next Monday so we have some hope of improvement! |
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I am so happy to read your latest response regarding PT, PoolLady. Every once in a while, something positive happens to keep us caregivers going! My husband had PT last fall and didn’t really progress because he wouldn’t let me go with him and then couldn’t remember most of the exercises he was supposed to do. And he didn’t do enough reps of the few exercises he did remember. The PT was the first person to notice his PD symptoms, though, and that got the PD ball rolling. He just returned to the PT and I am going with him this time. So far it is helping because at least he knows what he is supposed to do and sometimes even does it! GreyEyed, I have also looked into in-home care and found it to be very expensive. I found a program through our local Aging and Disability Resource center (ADRC) that is available to anyone, regardless of income. They will contract with a local agency to provide 112 hours of respite care per year for free. The ADRC has a wealth of other information on government and private foundation benefits and programs available in the area. Perhaps, there is a similar organization for seniors and/or disabled in your area. |
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| Thanks PDNewbie, but he's NOT doing the exercises at home but he is doing therapy there, however I go in with him and make sure he tells the truth about how many times he falls, etc. |
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| I apologize Poollady. I misread your post. Next time I won’t respond in the middle of the night. 😊 I sincerely hope that your hubby will realize the need for PT follow through at home and that will lead to improvement. |
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| Thanks either way. I appreciate your concern. |
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Hello everybody, I feel for what you are all going through. I will chime in to say that I am fortunate that my HWP actually IS doing his exercises at home and has benefitted greatly from doing so. I am sure you and your loved ones with PD already know that the exercises help with balance, flexibility, etc so I won’t go on about it. I am very grateful that my HWP is still thinking clearly and wants to help himself. There may be a point at which he will no longer fight this hard everyday. It sure sounds like you guys are setting your PWP up for success and doing everything except the exercises for them! Clearly this is an incredibly frustrating part of the disease. I understand how hard you are trying to give them every chance to be better and how bitterly disappointed you must feel when they cannot manage to help themselves. Where does the personality stop and the illness begin? I ask myself this when I see behavior that surprises me. Would some of this happen anyway as we age together? This is a very scary disease and you all are in the thick of it. I am here to listen and to appreciate and applaud your efforts! NoMatterWhat |