For those who care for someone with Parkinson's disease
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| I've been thinking about how I've changed. Over this last 2 years I've found I have very little patience caring for my honey. I'm really ashamed of how quick I am to get frustrated. It's so sad that this damn disease has stolen that from me. When I get enough rest I find myself again and can be the patient, loving, caring person I always was before. Yesterday morning was good and my honey said to me "Your the best woman I know". I just cried because I'm not always proud of how I have gotten so impatient and frustrated. Some family members tell me I'm strong but they don't have any idea of what it's like to watch your loved one slip away day after day. I know I need to find a good person to come in and help me so I can get rest. I tried last month with an agency but it just was more trouble and effort and I gave up. I just need to try again and maybe I can find the right person. |
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I'm very impatient with my husband and sometimes I hate the sound of my own voice. He doesn't understand what I am saying and I'm only trying to get him on and off the toilet in and out of bed, chair etc without him falling. I guess I think if I keep repeating myself or talk louder he will understand, but of course that doesn't work. He can do very little himself. It's physically exhausting. I do have help most days but the nights are the worst. My sleep is very interrupted. Get the most help you can afford. If you crash and burn, you won't be able to help him. I have been able to get away a bit and that helps. Good luck, it's not easy. |
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| My honey doesn't understand what I'm saying most of the time. And, yes, I do the same thing, repeat, repeat, talk louder. I now have tried to train myself to only repeat 3 times and then just say let me know and walk away. Trying to get him on the toilet is sometimes a major project. I feel like I'm directing someone to back up a truck into a small space. But thank goodness he tells me he has to go 99% of the time so I don't have a mess to clean up. Same with getting him to sit down in a chair. I don't know why he just hovers over the seat and won't sit down until I tell him about 10 times it's okay to sit now. Who would ever have thought this damn disease would attack our loved one and make it so hard to keep our sanity. I'll try the agency again soon and I pray I can find someone who I can trust to take good care of him so I can rest. |
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Flowers, I have been forced by the cold brutal reality of PD to realize that I cannot do this all by myself, like I thought I could. My husband makes it even harder/worse by refusing to do any of the things that would really help us, like wear a depends or use his bedside commode. So, I have reluctantly begun the search for help. Care.com was recommended to me: this is a site where you directly hire the caregiver so you would have to pay witholding, etc. for income tax purposes, make sure the caregiver is insured, do the background check, etc. You basically post what you are needing and can browse caregivers who meet your criteria, and they can email you inquiring about the post. You can sort/filter the caregiver list so if you only want to hire a male caregiver, you will see only males who have joined care.com looking for work. You have the option to do background/criminal checks as well, I think, but of course there's a fee for that. Living Angels is an agency that was referred to me. They do the background checks, do the witholding for tax purposes, provide insured caregivers, and help match the caregiver to you. They are more expensive than contracting directly with the caregiver, but they do a lot of things you would have to/want to do yourself. I'm sure there are others, but these are ones that were referred to me by someone who has hired more than a few caregivers. |
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Lurking, Flowers, everyone, I have just had a meeting with the OT who has known us for almost 4 years. It was a kind of come-to-Jesus meeting, where she was telling me that it is time to think ahead for assisted living/memory care for my husband. Things are progressing to the point where I just can't do it all. And she says that, in her experience, people wait until it is too late to plan these things, and then it is all a rush and a crisis. So I am in another version of this as well. Making the decision to let people who are professional at handling the caregiving do so, so that I can have a relationship with whatever remains of my husband. I've said it before, I'll say it again... Rotten, rotten disease. VV |
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Flowers, your husband sounds like mine. It's so hard trying to get him to turn around and sit on the toilet. He doesn't understand what to do. I'm going to try the only say it 3 times idea. Almost 1/2 the time he doesn't make it to the toilet. It's so sad. |
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| Flowers, it sounds to me like your husband "hovering" over the chair is freezing. We really can freeze doing just about anything. Knowing what it is (if it is freezing) may help at least you know what to call it now. Maybe try instead of repeating it's okay to sit down now, gently placing your hand on his shoulder or his hand will work for awhile just something to give gentle psychical stimulus to try and break (interrupt) the episode of freezing. Hope this helps. |
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| As previously mentioned it sounds like your PWP is experiencing freezing. It is suggested that if this occurs to sing a song. For us we sing the ABC's. My PWP doesn't always remember to do this but it seems to help when they remember. Also keep your directions short, giving long directions doesn't help them. I know sometimes I get frustrated too but I have to remind myself that it isn't her but PD causing these issues. Hope it helps, I'll be praying for you! |
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| I suggested the touch because touching stimulates response to physical senses where as singing is still vocal which isn't working or getting him to respond to the it's okay to sit down now. By changing which sense is responded to it can break the freeze. Whichever works best go with it. |
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| Thank you for the suggestions. When we walk sometimes he freezes getting started. I always take his arm and nudge him and say 123, 123 to get him started. That usually works. The sitting down part I'm usually holding the back of the chair and still supporting him by holding under his arm. I'll try putting my hand on his shoulder. All we can do is try different things and hope it works better. |
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I've found that when my husband freezes I usually ask him to "let go" of the intention to do the action -- to stop trying to sit down or stand or what ever. Instead I ask him to visualize some outrageous action for a couple of seconds --jumping on a trampoline or marching across a field -- and then to do the thing he wanted to do. The switch to a different thought-action seems to reset his brain. |
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My husband does freeze a lot. But with his dementia, sometimes he literally does not understand instructions. This is different than freezing. He can move but just not in the right direction he needs to go. |