Help Wanted

Yesterday was a rough day. It made me realize I am quickly losing my mobility and independence. I fear I am losing my ability to take care of my own kids every day.
On Facebook, there is a Cerebral Palsy Support Group page. Sometimes they post member questions, so that other people that have experienced similar problems can provide ideas and insight. So I sent them a question. They haven’t replied to me or posted my question, but I wanted to ask all of you. Maybe some or one of you is experiencing this. Or maybe you have a friend or acquaintance that has dealt with it. My question was this:

“I have CP, I’m married, and I have 2 kids, ages 8 & 1. I can walk, but as time goes by, it is increasingly difficult and painful. Cooking is especially difficult. When I say cooking, this includes even simple things like making sandwiches. I used to be able to clean ok, but that is getting much harder, as is chasing around my 1 year old son. Sometimes we sit in the car and watch movies, just so he is buckled down and happy, so I can sit down for a while. My husband works as a cook and I have been on disability for a year. I have a wheelchair, but my house is small, and it doesn’t fit through the hall or doorways, or around the kitchen table, or really even around the living room. And of course, it doesn’t reach the kitchen counters or stove. I’ve tried cooking from a stool, but having to get up and down a lot is worse than standing and walking, so that doesn’t work. I can tell I am rapidly losing mobility, and I don’t know what to do to be able to take care of my house and my kids. I was wondering if anyone else is going through this and what do they do?”

Please, chime in 🙂
The obvious answer would be to hire a someone to cook and clean for me, but I don’t have the resources right now. To my fellow Americans, would any type of insurance or government program cover anything like this?

What do I do?

**Please keep answers polite, any mean-spirited responses will be deleted. Thank you :)**

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8 responses to “Help Wanted

  1. Ashley, I can come over every day from 8:30 to 12:30 and hang out with you and cook and clean and it won’t cost you anything. I am your mother and I love you. Just say the word and I will be there, happily 🙂

  2. Household chore can be tiring, especially for a person with a disability. Having CP myself, I tire fast. Luckily I get help from my husband and kids; ages 13, 8, and 1.
    Maybe your 8-year old can help you in the kitchen. It will be like mom and daughter time and at the same time she will learn how to prepare a meal. Whenever I am cooking, sometimes I ask a family member to fetch something for me, especially if they enter the kitchen. I tell them “if you enter the kitchen, you have to help”.

    Since I hate vacuuming, I have thought of purchasing a robot vacuum. I probably never do so, but that’s an idea to accomplish that chore. I wish you the best.

    • The biggest problem I’m having right now is during the time that my husband is at work. Most of the time, it’s just the baby and I, because Romi is at school. On the weekends, she’s playing with him so he doesn’t wreak havoc while I’m in the kitchen. I’ll have to try that sometime though, sitting on the stool and letting her bring all the items I need.
      I would just stock my freezer with frozen lasagnas or something, but my husband is so. Picky. And the stuff would go bad before the kids and I would eat them ourselves.
      I’ve always been a neat freak, but I’ve kind off had to relinquish control and say “I’ll do it when I can.” We pay Romi a set (small) amount for each chore she does, and she’s saving up for something, so during the summer, she was pretty on top of doing the dishes, and even cleaning the bathroom. Now that school has started though, she’s gone all day, and then has homework, so she doesn’t have a lot of free time.
      The robot vacuum is an excellent idea! Our old house is actually hardwood and tile, so I don’t have to push a heavy vacuum. Do you have trouble using a regular mop? We bought a Swiffer mop, because I can’t use a regular mop. I kind of get “the look”, when I tell people that.
      I really think one of the biggest problems is that pain and fatigue are fairly recent issues for me. I used to be able to do whatever I wanted for pretty much as long as I wanted, so I’m still learning my boundaries. Unfortunately, when I feel like I’m up to cooking or cleaning and I do it, I end up in pain afterwards. But not always, so it’s like I never know, you know? And I’m the “Let’s get it done” type, so when I’m feeling good I don’t want to just sit there. And since I am able to walk, I just do it, even when I shouldn’t. If I could use my wheelchair around the house, I think that would be helpful (Of course I’d probably end up running over my son, lol).
      Another problem is not being able to use my wheelchair in public when it’s just me and the kids. Because I can’t push a cart (or stroller) from a wheelchair, and you can’t hold a baby and wheel a chair (I feel like someone should have solved that problem already? Maybe I’ll patent something and make a fortune 😉 ) I think that’s where having a hired person to help would be awesome, but maybe that’s one area where I just have to accept my limitations. But I’ve never been very good at that.
      You don’t use a wheelchair right? You use crutches? Do you have issues with getting around in public without help?

      • Conceerning the hardwood floor, my husband cleans them for me. I am just afraid of slipping. I might do them once in a while when I feel he is taking his sweet time to do them. I sit on a chair with wheels and clean it with a steam vac or swiffer. I manage to do the vaccuming by just using a crutch and sweep the hardwood floors, but it’s a little difficult.
        No, I don’t use a wheelchair, I use crutches, but I feel like I need one when I’m out in public. I get tired very fast. Nowadays I don’t go out as often as before because of it. I always have someone when I go out. I try to exercise in hope of feeling stronger and gaining energy, but it only helps a little bit.

      • Haha my husband takes his sweet time too 😉 I originally got my wheelchair for being out in public, because I was getting so tired and ending up in a lot of pain while shopping or anything else that was a lot of walking, but now I feel like I need it all the time :/
        Thank you so much for your input. It means a lot coming from another disabled mom 🙂

  3. Here in the UK, some of the supermarlets have electric wheelchairs that people can use tat have baskets on the front, and some have smaller trolleys that you can attach to the front of a wheelchair, so it might be worth asking if your local store has anything like that that they keep out of site from the general public and only bring out for people who need them?

    How easy do ou find it to get down onto the floor? I struggle o push a vaccum so I use a small handheld one just to keep on top of my own room. It doesn’t get everything up but it helps my mum out a bit. I just had to take regular breaks because I get tired.

    • The stores here have those too. I meant the cart to push my son in. Since he;s only a year old, he can’t sit in my lap if I have to wheel myself. We’ve tried letting my daughter push him, but she’s not quite big enough. And now that she’s back in school, it’s just him and I. It may be that I just need to accept the reality that if I need to go to the store, I’ll have to wait for someone to go with me. I’ve just never been very good at accepting limitations 😉

      Well, I don’t have to vacuum, because I have hardwood instead of carpet. The broom isn’t heavy, but it is hard to be on my feet, so I usually let someone else do it. It is hard to use a dustpan though, so if I do sweep I vacuum the pile up with a mini vac 🙂

      Thanks!

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