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Thread: Can a caregiver help me or am I being weak?

  1. #1

    Can a caregiver help me or am I being weak?

    I looked around my house today and realized it's gross. I'm gross. I feel gross, smell gross...haven't bathed in a few months and haven't washed my hair for six months. It's embarrassing and I hate it. I want to do all the things myself- I want to cook, clean, shower, take care of my family....but honestly... I am not doing a good job with it.

    So- to break the insanity maybe I should look for a caregiver. Husband is a CNA but I don't want him to be my primary AT ALL. Do NOT Want!

    My question is- I can still walk a bit, I can feed myself and go to the bathroom on my own. Isn't that too much I can do that I don't need a caregiver? Am I crazy to be thinking about this when I can still transfer on my own? Aren't I supposed to be worse off than I am before I consider assistance?

    I'm terrified to fall again- especially in the shower. So I got a shower chair and turns out it's very hard to get in and I get worn out and FREEZING cold when I try to use it. I have to take a two hour nap to recover from bathing. Washing my hair just is impossible. My arms cant' stay up that long without a lot of pain. I cant' hold up my head with all that weight of wet hair either. It's so heavy! The no rinse shampoos just leave my hair greasy- I think I'm doing them wrong.

    I can't do laundry any more by hand like I have done for five years for my family. Live on the third floor so can't get to the laundromat on my own. I could get myself down and maybe my chair but not the laundry- and then I wouldnt' get back UP with all of it. I know my clothes smell- especially since I quit smoking.

    Vacuuming is difficult because I have to stand to do it. The vacuum pulls my chair around the room- funny to watch but not so fun when I'm trying to clean The house is messy and this housewife is just sick of it all.

    I feel ashamed and don't want to go anywhere at all. I know people stare at me... I promise I'm a normal person!

    So these things (sorry it's so long!) are they enough to ask for help with from a caregiver? Is this what they do or is it only for those who have more trouble than me? I'm not complaining- this is just what my life is like right now.

  2. #2
    Senior Member Jonna's Avatar
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    Hi BlueRing ~

    You are definitely [B]not[B]someone I think of as "weak" by any stretch. I've read a lot of your posts, have learned a lot from you, and "weak" is not an adjective that describes anything about you.

    I think the salient question, above all others, is whether or not caregiver assistance would improve your quality of life. If yes, then yes - get one. There's enough about being in a wheelchair and struggling with illness that assaults one's sense of self without having to feel badly about how your home looks and how you look/smell on top of it. I know that in addition to helping with personal care (bathing, dressing, etc.) some caregivers will also do some "light" housework and cooking (but I don't know how "light" is defined). Others may be perfectly willing to negotiate with you something more than "light" help if you ask.

    I agree with you re: not wanting CNA hubby to provide this for you.
    Do not confuse silence with consent or fatigue for indifference.

  3. #3
    Senior Member lynnifer's Avatar
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    I'm T11 complete para due to Transverse Myelitis which I understand to be a bit fatiguing. I've been on/off work for the past 2yrs dealing with illness - but I know for a fact that the more I stay still, the worse I feel and the less that gets done. It's hard to get back to 'being busy' as well because we lose stamina so easily.

    It's so important to have an accessible home to live in, in order to do everything you just mentioned. Is there any way to make it so or move?

    Re: the vacuuming - hard to do from a wheelchair so when I bought my condo I made sure all the flooring was ceramic or laminate/wood. A steam mop makes it so easy!

    Re: the shower - maybe a bath lift or can you make it a roll-in shower? (yeah, I couldn't afford it either .. lol)
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  4. #4
    Jonna- thank you very much for the compliment. I worry about being weak a lot- Im sure this says much about my psyche. I don't know if getting a caregiver would help or turn me lazy. Perhaps I don't know what lazy really means- I was raised rather firmly with a VERY firm work ethic. I do know that I'm having so much trouble and it's getting to the point where Hubbs and I talked about what I would want done if I can't do anything. He wants to take care of me at home and I want to go to a facility where I won't be a burden to him.

    lynnifer- I am VERY happy to say we are moving in a month or so to a first floor apartment! YAY!!! It's only three steps into the apartment as opposed to the three flights we have now I have hardwood floors but with two kitties and a bunny the vacuum sure gets a work out! Maybe I should try dry mopping instead?

    A bath lift? To get me into the tub? Sounds big! Would they fit in the tiny bathroom apartments? Is there a technique to scrubbing that is easier that I don't know about? I can get undressed and redressed okay (bought easier clothes to get in and out of) but the scrubbing wears me out. Plus- it's COLD! I don't have a hand-held shower head (how would I wash with one hand? I still don't get that). I'm hoping the landlord will let me put one in for the new apt. I'm so excited/hopeful for the new apartment! I'm going to leave the house if I want to- I can go outside again which is very very exciting!

  5. #5
    Oh my dear, You are definetly NOT complaining. Needing help is not weak.
    Quitting smoking is a huge accomplishment-not for sissies.
    Would it be helpful if someone came in a couple times a week to help you wash your hair, shower, personal care etc? Maybe your husband knows a female CNA (not that it has to be a CNA) that would help.
    Many people have someone just come in weekly to vacuum and clean up. Nothing wrong with that.
    It sounds to me like it is all overwhelming and just a little help in even one of these areas would give you some relief.

  6. #6
    Senior Member lynnifer's Avatar
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    I've been eying a bath lift at my local DME for over a year - but they're something like $800-1000. It would be nice to take a bath again. Basically it's just a seat lift that goes up and down and there's an angled back on them. I don't trust myself lifting in/out after 26yrs of paralysis .. that's just asking for a broken bone.

    I use a shower bench for now as I have for 26yrs .. and yes the hand-held shower head helps and I have long thick hair as well. I just set the shower head on my leg so I have both hands free to lather up.

    I haven't been able to move around much while awaiting a hysterectomy, but I try to say to myself, "Okay on Sunday (or whatever day), I'm going to sweep, mop and take out the trash." I try to plan one day when I'll do half and another day when I'll do the rest or room by room (Tuesday I'll do the kitchen and bathroom, for instance). I have two cats as well .. not much to sweep every 2 or 3 days. A swiffer duster (on an extending stick) really picks up that cat hair too.

    I might have my members screwed up but I thought you pushed your chair several miles lately for some event?

    The only problem I have with cleaning is the bath tub - very hard for me to reach but CLR works wonders without having to scrub too much!

    I'm not sure what level you are as it's not in your profile so I don't know .. just some suggestions.
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  7. #7
    Quote Originally Posted by LindaT View Post
    Would it be helpful if someone came in a couple times a week to help you wash your hair, shower, personal care etc? Maybe your husband knows a female CNA (not that it has to be a CNA) that would help.
    YES. Even having someone do one of those things would be wonderful. Oddly enough what I miss most is doing the laundry. I loved knowing I was working and keeping my family in clean clothes. I also miss the smell of laundry- so nice!

    I'm going to ask him if he knows someone who'd like to make a little extra cash. I was thinking maybe twice a week- once for bathing and once for helping me do laundry at the laundromat. Maybe I can bend a little and let Hubby help me brush my hair. Heaven help us when he tries to do a braid lol.

    I don't know why I feel like I 'shouldn't' have this. Like I'm just not 'bad' enough for it. Perhaps I don't feel like I'm good enough. That's a different side of the coin. I'm the housewife- I'm supposed to take care of everyone else. This is just odd and never expected life to turn this way. Suppose that's a weak statement on an SCI board. I'm still getting used to it I suppose. Very glad to have people who have gone before me to learn from.

  8. #8
    Quote Originally Posted by lynnifer View Post
    I've been eying a bath lift at my local DME for over a year - but they're something like $800-1000. It would be nice to take a bath again. Basically it's just a seat lift that goes up and down and there's an angled back on them. I don't trust myself lifting in/out after 26yrs of paralysis .. that's just asking for a broken bone.

    I use a shower bench for now as I have for 26yrs .. and yes the hand-held shower head helps and I have long thick hair as well. I just set the shower head on my leg so I have both hands free to lather up.

    I haven't been able to move around much while awaiting a hysterectomy, but I try to say to myself, "Okay on Sunday (or whatever day), I'm going to sweep, mop and take out the trash." I try to plan one day when I'll do half and another day when I'll do the rest or room by room (Tuesday I'll do the kitchen and bathroom, for instance). I have two cats as well .. not much to sweep every 2 or 3 days. A swiffer duster (on an extending stick) really picks up that cat hair too.

    I might have my members screwed up but I thought you pushed your chair several miles lately for some event?
    I hope you get that bath lift soon. I like the idea of breaking it up by day. I asked Hubbs if we could get a swiffer and he wasn't sold on the idea since we have a vacuum. I may put my foot down and ask to try it since he's not unreasonable.

    Yes I did! Four miles Very proud of that. It's crazy- I can do stuff like push my chair but other things it's so much more difficult. I don't understand it. I can do much much more from my chair. Even though I can walk and stand, once I'm out of the chair my functions go downhill FAST. It's like my body focuses so much on staying upright that the rest of me turns into a noodle.

    I would love to try living in a chair-designed place for a week to try it out. I wonder if I could do more if I could reach more from my chair.

  9. #9
    Senior Member lynnifer's Avatar
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    Quote Originally Posted by BlueRing View Post
    I wonder if I could do more if I could reach more from my chair.
    Exactly. That is key. Unfortunately finances come into play here (as for that wheel-in shower or bath-tub lift I wanted .. not going to happen any time soon).

    I haven't walked in 26yrs but from my observations of others here - it's very exhausting to try and live day-to-day and keep up with the standing/walking. I imagine that must be its own special brand of hell!
    Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

    T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

  10. #10
    Quote Originally Posted by lynnifer View Post
    Exactly. That is key. Unfortunately finances come into play here (as for that wheel-in shower or bath-tub lift I wanted .. not going to happen any time soon).

    I haven't walked in 26yrs but from my observations of others here - it's very exhausting to try and live day-to-day and keep up with the standing/walking. I imagine that must be its own special brand of hell!
    I'm so blessed to have the new apartment. I'm going to wheel around it when it's empty and look at it- really look at it- and see where what needs to go. I hope it will give us a fresh start. We've been in this apartment for five years so it's a bit 'broken in' and we just don't see the changes as easily I think.

    I want to keep him comfy in his house too and have things put where he needs them- but I also need things and they need to be lower. Or higher- like the coffee table I type on- very very short. I hope with the new apt we can go around and discuss where things should go to help both of us out. If I help myself- then that will help him too.

    I think we all have heaven and hell around us all the time. Just depends on how we view it as to whether it looks up or down I say that today- but heh- could change depending on where I'm looking tomorrow! I don't know which is 'worse'= walking or not walking. I suppose each would say it was their own, or in a nicer world perhaps we would say it was the others

    I just pray every morning that I am alive and thankful for one more day to do work here. One more day- who knows, may be all it takes to change the world for the better. Hah- now I'm rambling. sorry!

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