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.
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.
The reality is that I would not turn Lynn’s care over to just anyone; it would have to be someone who knows what they are doing and who wants to help others who have medical needs. In order to do that, I would most likely need to hire someone. I checked into the cost of getting help in our area. If I wanted someone to just sit with him, it would cost $14/hr. If I want them to assist with his care, it’s $18/hr. There’s a four hour minimum. I would need this care 7 days a week. That’s $504/week for just four hours a day, seven days a week. Maybe I could afford that for one week but if I used respite for just four hours a day, then that still leaves me 20 hours that I’m providing him care (maybe 15 since I do usually sleep five hours). If I were to go away for a long weekend (three days), the cost for his care would be $1,296! That is only for his care; nothing related to going away.
So I’m feeling a bit depressed right now. I NEED A BREAK but a break is impossible to get. I can’t afford a break so I’ll just keep plugging along. I know one day, I’ll get some rest when I enter a hospital somewhere; just hope I’m not in too much discomfort to enjoy it.
Do you celebrate your MS Anniversary?