For those who care for someone with Parkinson's disease
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| Hi, I have been reading posts on this forum for awhile now. Some read as if I had posted them myself. I feel a kindred spirit with some of you already. My husband was diagnosed with PD 6 years ago. the dementia came soon after, so did the hallucinations and psychosis. his tremor is very, very mild, almost nonexistent most of the time. it seems as if his cognition has deteriorated so rapidly from the start, my MIL had PD for over 20 years and her mind NEVER got to the point that his has already. He falls often, has bouts with freezing. Most of the time he cannot understand very simple commands. He can't drive anymore, heartbreaking, he has Classic cars. I don't want to ramble on but I am his only caregiver and it is so hard and gets so lonely at times. He doesn't talk much now. Thanks for listening.. |
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Hi I was just about to post on the same topic. I feel so lonely. Dh has had been unwell since before Christmas with increasing hallucinations/paranoia/psychosis and even though I managed to get him back from a severely agitated state by adjusting meds which means loss of motor agility then trying to get it back up again, he just not getting back to anything like he was toward the latter part of last year. I'm beginning to wonder if this is our new reality and I feel very sad and lonely. I miss him.... even the way he was. Unlike your husband mine talks all the time but his thoughts are so random and scattered it's difficult to follow his thread of thought. And he is likely to fly off the handle at any moment, I'm walking on eggshells all the time. Like someone said...this sure ain't for sissies.. Hope tomorrow will be better for our loved ones and us too. Hugs |
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| We too have had a tough time lately. The Paxil was increased to treat the Impulse Control Disorder (which I assume was caused from the Levodopa), but that caused more anxiety. So then they started him on Olanzapine 2 x daily which helped his anxiety and stopped the night hallucinations for a couple of days, but it has really, really effected his ability to walk and transfer. The Psychiatrist still wants him to go to a long term care facility, but no facility in our town will accept him. They are talking about a facility somewhere else in the state. That would be at least an hr. drive for me one way and we don't have long term care insurance. I am still hoping that there is something else that can be done at home. My DH is very hard to understand lately, so I have to ask him to repeat many times. I am his only caregiver also, so I empathize with your feeling alone. |
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Thanks to you all for caring and the hugs. I helped take care of my MIL with PD but I never imagined I would be taking care of my husband this soon after. the plans we made for the future will never come to be. I don't want to sound as if I am drowning in self pity but I was in the ER with a kidney stone yesterday and I am so worn out. We have a 5 month old grandbaby and I don't get to spend much time with her because my husband is so needy. He doesn't want me out of his sight. I am forever cleaning up after him. I ordered him a lift chair and he doesn't want to sit in it. It is so difficult to pull him up. Hoping tomorrow is a better day... |
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I wonder why our husbands don't want to use the lift chairs? Are they afraid of getting stuck in it? My hubby told me his wasn't comfortable. I'm so tired of pulling him up from his recliner several times a day as well as lifting him in and out of bed during the night. My shoulders are messed up as well as my neck and hip. I'm going to sell the lift chair we have and buy something more like his cushy recliner but now I wonder if he would sit in that? I'm having a difficult time tonight with him. He wants to get up and move to a different chair every 15 minutes or so. He didn't want to go to bed when I suggested it but as soon as I got him sitting down in a chair again he all of sudden wants to go to bed. Typical, up and down, up and down. So exhausting and frustrating. |
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I know all of the above and its very hard on us caregivers. I am from Canada so things may be different in the States, but I get help from the Alzheimer's Society. (there must be one around your area). There is a PSW that comes for 6 hours one day a week, but of course I have to pay her, but it's worth it. She is so good with my husband. I also take him to the Alzheimer's Society Day Away Program once a week. That costs me 18 per day and a hot meal is included and the staff is so good to him. This gives me a break for 2 days per week, plus I have a PSW shower and dress him twice a week, but I don't pay for that. Hopefully if you call the Society in your area, they have the same sort of program. You totally need to have some kind of break at least one day per week if you can swing it. I know it costs money but your health is more important so if you can afford it for one day, try it. The other day I saw some lift equipment that goes on the seat of an regular chair and it's not as expensive as a big lift chair, so maybe look into it. I saw it in the Shopper's Health Care store which is an extension of the Shopper's Pharmacy in Canada, so maybe there is a similar place in the States. |
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| I like the comment...."this sure ain't for sissies" 20 years into this and I can sympathize and empathize with all of you |
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Hello Martha, this is such a caring place to come to and just know that you're not alone in this heartbreaking disease. My hubby was diagnosed 9 years ago and only had a slight tremor in his left hand for the first 4 years. Then he had stiffness in his limbs and it's progressed over the last 5 years to being unable to do much and has sporadic dementia, hallucinations and all the same things you describe. It's so difficult to talk in the simplest terms and not be understood, to have to ask a simple question over and over asking only for a yes or no answer. I know your frustration so well. I'm just now struggling with trying to find the right caregiver to give me some help. I think sometimes I'm going to go crazy. Not enough sleep, painful muscles from trying to get him up and back to bed. We have one son here that helps out but I'm not able to get out for more than an hour at a time and then sometimes that's not possible. My hubby has become so dependent on me that he can't deal with me not being right in front of him. It's so lonely not having any family or friends to laugh with and visit with. Sending you big hugs. |