For those who care for someone with Parkinson's disease
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I've been realizing a hidden cost of PD is waste. Food waste, for one. My husband might decide he doesn't want to eat what he just told me that he wanted me to fix, and mush it around on the plate so I can't really save it for later, or he'll drop/spill most of it onto the floor...he likes to literally rip open the bag of chips all the way down the package, and then leave it out on the counter so they get stale, or I'll find the milk in the pantry where he put it when everyone's asleep and it's warm and no one will drink it, or he'll bite directly off of the block of cheese (you can see his teeth marks, better than dental impressions!) and no one wants to eat any of that either, and on and on. I end up throwing away so much food and feel so guilty. Then there's equipment and stuff. He's broken three electric razors by peeling pieces of them off, several remote controls, the remote control that is wired directly into the motor of his lift chair (how? I don't even know), two pairs of binoculars (this was much earlier in the disease process and I wondered what was going on-now I know), and countless dishes, bowls, and glasses. He rips or cuts his shorts and shirts if he gets frustrated with trying to get them off/on and won't wait for me to help or I'm gone. We have holes in our sheetrock behind doors from him leaning and pushing on them so hard the doorknobs and doorhooks push into the wall and bust the sheetrock (not even fixing them as what's the point-it'll just happen again). I have so many stained rugs, dish towels, placemats, and bedding items and no matter what I do, I can't get those stains out. I've thrown away so many of these things. I had to pay someone to come haul off our sectional to the dump as he peed on it so often the whole house smelled like urine when you walked in the door, and washing the cushion covers does not fix the problem. He's also peed on two sets of bar stools-the first ones I got rid of and now am realizing the second set needs to go as well. I know he can't help it. But I look around our home and see how empty it's become because so many things have been ruined we had to get rid of them, and it's sad. I realize how much all of those things cost and it's a lot. With the exception of his lift chair, which is soon going to have to be tossed out to because of urine (yeah, those pee pads don't work if your PWP takes them off!), we're down to wood and metal and tile because those things don't break (at least yet) and can be cleaned. And today he left the water running in the shower, with the shower sprayer pointing outside the tub of course, and in less than five minutes the water had flooded the bathroom, hallway, and part of two bedrooms. Laminate wood floors, which don't like water. I don't know if I got it up quickly enough but if not, we're facing having to replace those floors as well. Maybe I'll just give up and have a concrete slab for a floor  Anyone else dealing with this? |
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Mom doesn't really eat that much, so a lot of food ends up expired and I end up throwing it out. (I'm afraid someone will get food poisoning on top of everything else, so I don't feel guilty about it.) Sometimes she'll put a half-eaten lunch in the refrigerator, and I end up throwing it away two days later. The hidden costs for me are for Depends, Poise Pads, bed liners, over-the-counter creams (foot creams, skin barrier creams, pain creams, medicated lotions, etc), desitin, preparation h, prescription co-pays, and more. She does tend to make overflowing cups of hot chocolate, tea, coffee, etc, and drip it on the carpet. I finally bought a Bissell carpet shampooer several years ago, but to keep up with the stains I have to shampoo the carpet once a week or more...which I don't always do. (Several years ago I rented a Rug Doctor, and the next day she dropped a jug of bleach in the kitchen and it splattered on the newly shampooed floor. So I gave up and bought a carpet shampooer...not that it would help with the bleach stains.) Mom sometimes says she's getting a new bed, a new chair, etc., and I have to remind her the chair is only three years old, the bed MAYBE four (and she got the new ones because she said the old ones were not comfortable, etc, but her complaints of discomfort never change, no matter what new thing we get). She gets obsessive about finding shoes that won't hurt her feet, and I sometimes fear she's going to want to start doing the same with bigger items like beds, chairs, etc., and it just gives me a headache. (Her bed is adjustable, and she has to have it JUST perfect every night. I can't imagine her sleeping in a regular bed anymore, or any other kind of bed, really.) I try to remind her we can afford 30 or 40 pairs of shoes she ultimately says she can't wear so won't wear, but we're not doing the same thing with beds and furniture. We just got new carpet, but the old carpet was almost 30 years old anyway. Still, the old carpet had a few years of layers of stains next to her living room chair. I shampooed it many times, but at a certain point it doesn't matter much anymore. |
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| We have the food waste going on, I come home to find loaves of bread out on the counter or in the fridge, just sitting there getting hard and stale, or jugs of milk left out on the counter, or open bags of stale chips, things of that nature. And things stained and generally messed up too, and that gets me the most, usually when I come home after a long day at work and walk in and see the state of the house I had worked so hard to put together...and it's such a wreck now...stained floors, the bedroom and bed a wreck, pee all over the bathroom, dirty countertops, the list goes on and on. I know people might be thinking "These are just 'things', you shouldn't worry about that stuff" but the thing is, I always took great pride in my home until now, and the fact is, I'd be lying if I said it doesn't bother me....it adds to my depression to see it this way, it's very sad, I hate to see our house this way. And there's no point to try to fix it, as was said, because it will only go right back to this current state. The ability to have a nice home for our family to live in...just one more thing this miserable disease takes away from us. |
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I love you guys, you are able to put into words everything that is going on in our family that I just do not know how to articulate and most of the time too exhausted and numb even to try. Only those of us that are living with parkinson's can really understand, I could never have this conversation with any of the people I work with. Thank you for sharing, our house is exactly the same, wasted food left on the countertop, floor and everywhere really. I too was very house proud but now it's just a matter of getting through the day and accepting what I see. Most of our furniture is ready to be thrown out because of all the moving around my PWP has attempted to do and our floors are scratched and worn. The bedroom is a nightmare I never know what I am going to see with rearranged furniture configuration on a daily basis. How he can find the strength to move a king size bed, chest of drawers , bed side lockers and bookcases when I am not there blows my mind! When I am home he spends most of the time sleeping and he needs everything done for him. Yesterday he took to an outside wall (not ours) and was trying to lift the brickwork to bring it into our garden. There was no use in arguing with him so I have just took every tool in our house and put them where he cannot find them. It's really sad because he would never live this way before parkinson's. He lioved a clean house and was very house proud too. Anyway I have learned to just see the mess and accept that yes this is our life right now and try not to get upset. His clothes get so badly stained too. Chin up as they say we are not alone we have this forum! |