For those who care for someone with Parkinson's disease
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We've talked before about when and how much to help, and I've never been really very clear on it and of course it fluctuates from day to day. But this morning, at 4am, when I was so tired from having been woken up several nights this week in the wee hours and particularly exhausted and snappy with our kids, I learned something. My husband was yelling this morning and I came running to find him on the floor by his bed and his S-pole (we have several of these floor-to-ceiling tension rods and they are great to put beside the bed, chairs, toilet, to hold onto and get up/down). He wanted me to lift him off the floor and onto his bed, which I can't do, and I reminded him. He was wanting to have a big conversation about why I should injure myself to lift him off the floor (this can go on for an hour or more and at 4am I just can't do it), so I told him if he wanted to move, he would have to be the one to do it, and I had to get some sleep as I had kid activities the next morning. He didn't want me to call 911 for assistance so I put a pillow under his head and a blanket if he wanted one and was going to go back to bed.... It couldn't have been but a few minutes when I heard him all the way in the bathroom using the toilet! I was incredulous. Not only was he able to very quickly get up off the floor, but navigate, without his walker by the way, out of his bedroom, to the hall, and then the bathroom to the toilet. All when only moments before he swore he couldn't even move an arm. I question whether he really needed my help all those times he has insisted I help him get from A to B, that if I made him do it himself he would have been able to? Not that it matters now, it's all water under the bridge, but for future reference and how to respond, it makes me think. My son sees him moving so much better when he doesn't think anyone is around and it's so odd. I'm beginning to wonder if I really help when I'm trying to help? He's able to get whatever he wants from anywhere in the house when he doesn't think I can help (I'm gone with the kids or working, etc.) yet seems to dissolve into practically an invalid when I'm there. Does anyone else experience this? |
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We don't have exactly this challenge. But, my PWP has always enjoyed a relaxing bath. I am now concerned that he does not exercise or bend or carry any weight etc. So getting down into the tub and back up seems like a risky proposition. After a knee surgery, he was using a shower chair, and gave it up asap. I have essentially made my opinion known: he gets stuck in the tub = I won't be able to get him up. So, I listen for falls, calls, or struggles, but I don't go checking or offer routine assistance. He carries on. Since I work with younger people with disabilities as a career, and part of that work requires that the individual request assistance, I have in some ways adopted that to our situation. I made some changes to make things easier or safer, but I wait for him to ask for assistance with opening a bottle or other random activities of daily living. It is working for us. I still observe and remain mindful of changes we need to make for safety. And, I make more offers of assistance if we are out in a situation where we are in a crowd of people and maneuvering might be difficult. Sometimes he accepts the offer of assistance and sometimes he helps himself. So, I agree with you. You still have needs too and I make my needs known as well. I must sleep to handle my job. We need my income. So he must remain as independent as possible as long as possible and I don't take over something unless he is having a bad day (just as I can have bad days) or unless he has a new struggle and it is starting to be a "new normal." And, I try to remember that he does lose energy as the evening comes on--so he can look as if he needs more help. The unpredictability is HUGE. Your chat with him may have helped get him unstuck. Oh, and I would love info on the S-pole. It sounds like a helpful device. |
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The pole is great, we have several scattered around the house. Here's a link, but I think a lot of places sell it: https://www.homedepot.com/p/Stander-Adjustable-Floor-to-Ceiling-Security-Pole-and-Curve-Grab-Bar-in-White-1100-W/205216806 If you order one, be sure to get the curve grab bar-that's what makes this work so well. You can also hang the bath towel on one of the curves so it's right there when you're done! |
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| Great thread. Good posting, I've always advocated letting Us (PD Patients) do as much as possible for as long as possible (barring things where we can injure ourselves or others) If it takes a little longer now or we struggle a bit let Us do it. The more things caregivers take over and the earlier you take over the sooner burnout can happen. I know hearts are in the right place and you want to ease suffering and make it easier on the PWP but this is a brutal long term disease it won't be a case of can you get me a drink for a month or two like a broken leg might be it will be years and years and naturally some resentment builds. When resentment surfaces we can start to question everything and if there are motives behind actions or happenstance. When I do state let us do all we can for as long as we can many times it is dismissed as I don't know what I'm talking about it is obvious at support groups by the looks on caregivers faces as their patients are sick and need them to do everything for them. Like I said it isn't something that will go away in a few months (I'm in my thirty third year of living with Parkinson's Disease). Lynn, what a great observation and statement... "Your chat with him may have helped get him unstuck" Thanks for posting that. It brought us back to a part of the disease we sometimes do not think of freezing placing the pillow under his head could have stimulated him and unlocked the freeze, enabling him to get to the bathroom. There are so many variables with this damn disease we do the best we can to figure out what is going on. Again good post good subject |
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Have to admit that I often wish he’d “speed up”, like when he tries to take his wallet out...but I sit back and let him get there at his own pace. Al, I DO remember you telling me to not ‘do’ things too soon. You were right...I see that more clearly now and it especially hits home during the boxing. Those instructors don’t cut the PWPs ANY slack! I think it is human nature to want to help someone who is sick, but as caregivers when we do too much for an extended period of time, we see it leads to burn out and frustration. |
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This is an issue for me also. Mostly I just make myself scarce when mom starts asking for too much--I'll go outside, downstairs, etc. Sometimes I feel like my presence is just a "security blanket" for her, not a necessity. Sometimes she will ask me to watch a particular show with her, but not 3 minutes into it she'll ask for me to get her some tea or hot chocolate, then an ice pack for her back, then help her with the heating pad for her legs, then get the lotion in the bathroom and bring it out, etc, etc. Pretty soon the show is over and it only felt like an excuse to keep me in the room. When she's having "off" time, it is difficult for her, and she is in some distress, but she can get herself to the bathroom, and do pretty much anything she needs to do. She just doesn't want to do it. When her meds are at their peak, she's often cleaning, washing dishes, dusting, etc., and I'm doing the opposite--telling her to slow down, be careful, sit down for a little bit, etc. I'm a teacher, so summer is almost over. She did fine while I was at work during the day last year. Dad helps her, but he doesn't do nearly as much as I do. I just have to remember that she can do more than I generally think, and it's good for her to do as much as she can on her own. (Occasionally she'll call through the house for me to do something, and I consciously ignore it. If I know she can do it, I'm not jumping up every time she yells, and I'm not arguing with her about it. I just don't respond. Feels mean or passive aggressive sometimes, but I've done so much that it doesn't feel THAT mean or passive aggressive.) |
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Hello Lurking.... Thank you for the info on the security pole. Is it held in place solely as a tension rod or is it secured at the ceiling or floor with screws or something? -- I watched the video and thought it was just tension and relatively easy to relocate. Have you ever had it slip from position? THANKS!! ~Lynn |
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On the S-pole: I've never had one slip, but I tightened it pretty tight when installing it. They are very easy to put together as the pieces are numbered and it can only go together one way. Then you put it where you want it and tighten it as far as you can...but not too far or you may crack the ceiling! It comes with the tool to tighten it, too. I would recommend that you think about where you want the S part to face, since once you tighten it, it's a bit hard to untighten it to shift it around. I'm a small woman and was able to easily put the thing together and install it too. |
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We have 2 super poles and I had the technician from Motion Specialities install the pole so I know it was done right. I left them up since my husband no longer lives here (in long term) but they will be handy if I ever need them. |
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| always on the lookout for the experiences of others. I too worked with the disabled. |