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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.

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.

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Comments

  • mob29d
    4 years ago

    Caregiving is honestly one of the most frustrating things. I really wish it were easier (or even possible!) to find free or cheap care. I’m 24 and have been caring for my mother with ms for many years because my family cannot afford care for her and it has led me to become deeply depressed, let alone not able to have any sort of career or social life. It is very frustrating and wish it was much easier to get help.

  • mario lobo
    5 years ago

    Donna,
    Thank you for your frank posting. I totally empathize with your situation even though my role as a caregiver has not become as demanding as yours…yet. Many people don’t understand how much of a toll the caregiver role takes on a person. What I find particularly aggravating are comments from well intentioned people who romanticize caregiving, as if the years-long, full time committment, of taking care of a loved one with MS, were the equivalent of making chicken soup for someone who has a cold. The romantic aspect of caregiving fades pretty quickly, and evolves into a feeling of helplessness, and resignation to the fact that the situation seems like it will never end.
    We need places like this forum and caregiver support groups of all kinds where we can be open, honest and express ourselves to people who can relate to what we’re going through and who won’t judge us for venting and letting our feelings show. I hope you find ways to take care of yourself, which I realize may not be in the cards for your for the time being.
    Mario

  • Donna Steigleder moderator author
    5 years ago

    well said Mario. You described it perfectly.

  • D-bob
    5 years ago

    Try being both. For the last 3 years I have been the caregiver for my friend/ housemate, who has Alzheimers and has gotten to the stage where she can’t be left alone….and, I have SPMS

  • Donna Steigleder moderator author
    5 years ago

    That must be extremely difficult for you to do both. I feel overwhelmed with just one aspect of your situation; I can’t imagine handling both though I have learned that we do tend to adapt to whatever comes our way and learn to accept it as our new “normal.”

  • lipasi
    5 years ago

    I feel your pain as I am going through the same situation. My husband was diagnosed in 2000 with primary progressive MS. He was relatively strong for a while but the past few years he has gone downhill at an alarming pace. To make matters worse, three years ago our sweet daughter passed away and one year ago our remaining child moved to Hawaii. It can be so lonely but I try to remember that it really sucks being my husband. Hang in there, I will pray for you and your husband. It is good to vent but try to choose to be positive, for your only mental health.

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