Who Can Afford Respite Care?

Before I get started on this blog, I want to write a disclaimer:  I’m very tired and having difficulty this week coping so if you are a caregiver; read on—you probably have felt the same way.  If you are someone with MS, maybe you better skip this one.  It’s not meant to cause you guilt or pain but unfortunately, it’s how I’m feeling right now.

So what’s wrong with me today?  I’m tired.  My body aches.  And though it’s 8:30 at night when most people are starting to wind down, I still have many hours to go.  Nothing out of the ordinary going on today; it’s just a regular day, but that’s why I’m feeling down…Not depressed; just down.

Do you ever just feel like you want to run away?  I do.  I want so much to have a couple of days in a row where I only take care of myself.  I really feel like I need to get away but I also know that is not going to happen.  You may be thinking, if you’re a parent of a young child that you are also in the same situation, but unless you have a special needs child that is not likely to leave home, I’m going to challenge you on that view.  When your child is totally dependent on you, they are still small enough that you can lift them fairly easily.  Chances are they weigh less than 50 pounds. The person I’m caring for weighs 195 pounds, is six feet tall, and can’t move a muscle independently. While your child is taking up every spare minute of your day, you know they are going to gain independence, and as they grow and learn, they will become even more independent until eventually they will either leave home or if they stay at home, you can ignore them. You have the “empty nest” to look forward to.

I don’t.

Not trying to be morbid here but my responsibilities are only going to get more demanding; not less. As I grow older and have less strength and more discomfort, his needs will only be getting greater.  Our situation will not get better until one of us dies … and the fact is, I’m just as likely to be the one to go as he is since the life expectancy for a full time caregiver is less than the average population’s of the same age.  I sometimes feel that the only way I’m ever going to get any rest or really be able to rejuvenate is to become hospitalized myself.

I know I should not be complaining like this; I have people come over almost every day to help Lynn with his writing.  Most of them also feed him his breakfast, get him what he wants to drink and help him with small comforts.  However, in order to be able to use their services, I have to get up three hours before they arrive to get him ready for them.  Then once they leave, I have hours of work to do related to his care as well.  Each morning my alarm goes off and Lynn is telling me to get up; he needs to empty is bladder as soon as possible. So I can’t linger in bed and stretch or gradually to wake up anymore.  Then we spend a half hour to an hour in the bathroom where my tired, tight-feeling body lifts him onto and off of the toilet.  Finally, I lay him down to get him off his butt since he sits up to sleep. I want so much to not have to get up each morning; to not spend three hours lifting body parts that are heavy and dead weight; to not feel so exhausted I can hardly move.

But I can’t.

Continue reading at: http://multiplesclerosis.net/living-with-ms/can-afford-respite-care/

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About mscaregiverdonna

I am a full-time caregiver for my spouse who has Multiple Sclerosis while I try to work full-time, take care of our home, and handle any number of other functions that used to be shared by the two of us. I'm learning that it's amazing what you can do when you have to and when you have God to send you the resources you need to manage moment by moment.
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3 Responses to Who Can Afford Respite Care?

  1. sandra says:

    I’m feeling your pain……wish U lived closer……

  2. me says:

    Thank you for sharing this – it is hard to share but it is the truth. While I’m not into this quite as far as you I still have the same thoughts – where is me time? When does someone take care of me? I went through a period of hoping to get sick just to be in the hospital but that whole idea is crazy talk and would set me back even further – so I just try to enjoy those brief moments of me time – a simple walk to the car, a quiet moment between meetings – small things but I’m trying to learn to appreciate them and enjoy the moment. Hugs to you!

  3. From your heart to mine. I know exactly what you’re saying. Blessings to you! Donna

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