For those who care for someone with Parkinson's disease
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I don't know if it's that it's summer or what, but my nerves are shot. My husband has been hovering around me constantly, listening in on the few phone conversations I have (work, friends, family, whatever), standing in the same place for an hour or more to watch me cook, clean, water the plants, do laundry, etc. (which I keep telling him he shouldn't be doing because he can fall). I can't concentrate on hardly anything and am making mistakes all over the place with his interruptions which make no sense or his asking me the same thing over and over and over. I can't focus when my husband is bent over, drooling, three feet away from me, interjecting garbled comments into a conversation I am trying to have with someone, or leaning on the kitchen wall of our tiny kitchen and blocking the path to the stove, or, something he is doing with increasing frequency, sitting on the bottom of the stairs so that no one can get up or down without a ridiculous series of gymnastic moves. Our kids hate him listening in on their conversations, and have taken to whispering and/or not talking at all and using only text. It's so hard. I keep asking him what he would like to do, and telling him that he needs to find things to do that he enjoys but he hasn't-it's been five years since he left the office and I've been begging him that whole time to get some activities, but nope. I know he must be bored, so why won't he get a hobby or two? I've offered to get him whatever supplies he might need, take him wherever he might need to go, even suggested many different hobbies. And while he agrees that he needs to find something to do, he hasn't. Today he was supposed to go to a PD exercise class but he refused to go, flat refused to go. This was so upsetting to me. Does anyone else's PWP hover or do things like this, and what do you do about it? |
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That all sounds very frustrating. Where I live we have a community care organization funded by the government. When things got really tough for our family I reached out to this organization. They arranged for personal social workers to visit two hours every day. They also have a volunteer program where an individual visits and they talk or walk etc. I also found an adult day program that he goes to two days a week. A bus calls to the house to bring him to the day program and brings him home. In previous years my husband either would not go or would start and not continue. Things got so bad in our house that he did not have a choice anymore he had to go. As it happens he likes the day program and this is his third month. Maybe it's time to give him no alternative ? I know this is easier said than done and maybe in my case he was just ready to go. I purchased him a motorized scooter/chair and he uses this to go for short rides outside. It sounds like you could do with some outside help. If there is an opportunity for you to receive help I really encourage you to go get it. Hope this gives you some ideas. |
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| Seems like we have the same husband, but with a different name and address. My husband does the same things. If I answer a phone, it is the exact moment when he demands, water, bathroom, food, or some other thing for himself. When I am in the kitchen I fear for his safety. So we had to make a rule that once I begin cooking, his needs will no longer be met when I am preparing a meal. I do not respond to him at all. If he comes into the kitchen I stop cooking. Once he leaves meal prep will continue. Accidently scalding him with hot water, or a stab of a knife did not seem a good alternative. Took him a long time to modify his behavior but at least I no longer fear for anyone's safety. Just now he started to yell for his cell phone since I am trying to pay the bills in another part of the house. Asked him if the house was on fire, or we needed to call the EMTs or police, when he answered NO. (He no longer speaks on the phone so there is no reason why he needed a phone.) I told him he would get his phone in an hour from now. Diverted him to watching the clock. I can guarantee in exactly one hour he will demand the phone. I have help 5 days a week - 9am - 3pm so I can get things done. It is hard-earned money well spent in my book. A facility for him ($6-10K per month), or one for me due to a mental breakdown would cost more than $300-350per week for home help. I no longer have a husband but live with a disease. The disease will conquer him no matter what, but I can't let it conquer me so I live like a widow waiting for the body to get cold. Sounds cold and hurtful, but there is no man, no marriage, no relationship any more, just a body that demands services. After therapy, I have come to understand that his life has been taken by Parkinsons, but I do not have to die with him. There is no longer guilt. |
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Bksquared, Do you mind my asking where you found your help? If I did the math right, it looks like you pay around ten bucks an hour, which seems reasonable. I've not been able to find help yet (even at a higher rate). I could use some therapy on guilt. A few months ago my husband asked me if I felt guilty. I asked him what would I have to feel guilty about? He said I was getting to live the life I wanted and he wasn't. I was so shocked I couldn't say anything (what would I even say?) and walked out of the room. I thought I was doing a pretty good job coping, but his remarks set me back quite a bit. I'm trying to crawl out of the hole again. This is such a rotten disease. |
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Wow. I can't imagine finding help at home for $10 an hour. We have never paid less than $20. VV |
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Oh my gosh, Bksquared, you took the words right out of my mouth! I feel exactly the same way! I no longer have a husband, that man is gone, all that's left is a person whose brain has been lost to disease and dementia. Lurking, mine said the same thing to me, about living the life I want, and I said "You think this is the life I want?? The kids want?? Having to be constant high level caregivers for a dying family member? Trust me, you may be the one with the disease in their body, but we are all living with it." He is getting worse and worse, PT kicked him out, they said they couldn't do anything more for him. He is struggling with dementia, struggling with all movement, struggling with eating sometimes, struggling with hygiene, dressing, bathroom...struggling with everything. He falls often, he has trouble following a conversation, trouble with memory, trouble finding words, his vision is getting worse, and it's not his glasses, his brain can't process what his optic nerves are sending... he is really falling apart. And he is a hoverer too. Wants to be a part of everything, wants to join in on every little thing anyone is doing, he is in denial about being sick...even though he is SO sick, he still denies it...if the kids (we have two young girls) and I go to a store for something, he demands to go with us, even though it is a HUGE burden to try to drag him with us, and the girls are embarrassed of how he looks, and he won't be able to complete whatever we are doing because he will get too tired, not be able to go any further, and we all have to quit early and go home, even if we haven't finished whatever we were trying to accomplish. So the girls always say "Mom...does he HAVE to come with us?? Make him stay home!" And I have been trying more and more lately to insist he has to stay home, it's just not worth it to try to drag him with us on mundane tasks like to get some groceries or a birthday gift for a friend. But then he starts accusing me of cheating on him. This whole thing is miserable beyond words. I need help of some kind, but we don't qualify for anything. His doctors have even been trying to help figure something out, he goes to an excellent neurological center, but we don't qualify for any programs or assistance. He is not a veteran, and because I have a job we aren't below the poverty line. There is an Alzheimer's association here that gives credits to help pay for assistance, but you have to be at least 60, and he is only 58. Everybody is out of ideas, and even his family all live in another state. Trying to raise two young kids, and save for their college and all, I can't pour money into household help, we just don't have it to spare. It is a miserable existence for all of us and I feel especially sorry for the kids. |