Sunday, January 29, 2012

Multiple Sclerosis: Kim's Caregiver Story

I had already had the idea to do this interview series when I came upon Kim on the Createability chat threads. Kim is 21 years old from Bristol, England, where she operates her two Etsy shops; she sells her handmade items at Peaches and Pebbles, and Dandelion Grenade is her stationary shop.  She was looking for people to interview about their disabilities for her blog. I guess great minds think alike! After talking with Kim some, I learned that she is a caregiver to her mother who has Multiple Sclerosis. Right away, I was anxious to hear her story, as I have an aunt who suffers from the very same disease. Here is Kim's story:

Tell me who you care for, and briefly describe their disability.
I care for my mother. She was diagnosed with Multiple Sclerosis in 1989, 2 years before I was born. She was still able-bodied back then, and did her best for me while she could, but she would have relapses where she would be depressed and have trouble doing what a healthy person would consider to be basic things (using a computer, reading a book, doing cross stitch etc). About four years ago she had a relapse and just never recovered, and now she struggles to do the truly basic things, and has become a completely different person. Multiple Sclerosis, or MS, is a neurological disorder and has affected her ability to think properly, walk, or do much for herself.

Kim's Mom

What are her limitations?
She is unable to do much for herself. Myself, my boyfriend, and my father all do our bit. We have to feed her, wheel her around since she can't walk any more, and forgets things that we told her only a moment before. She also thinks when she hears a noise that it's someone coming into the house to see her, a friend. But when we tell her there was no noise, she's always convinced we're lying - though I think that's to do with her own stubbornness! She can't hold things properly, she shakes and wobbles even while sat in her chair, which she cannot get out of on her own. Needless to say, its difficult.

On a daily basis, what is the most challenging part of caring for her?
The most challenging part of looking after her is actually quite simple. As I mentioned before, she forgets a lot of the things we tell her, so the hardest part is trying not to get frustrated when she asks the same questions over and over if she hears a noise. The worst it's been is when our dogs passed away. She would always ask where they were - I think the last one passed in the summer just gone, and even now, more than 6 months on, she asks where they are, and still thinks we're lying.

What is the most difficult thing you've ever dealt with in regards to her disability?
The most difficult thing I've ever had to deal with was trying to understand what was wrong. Even now, I can't eloquently put it together. I know that something is wrong with her brain, and that she always says her thoughts, no matter how wrong or offensive they can be from time to time, and that she can't do anything for herself, but I can't say I've ever known why. And it's also been the classic case of "you don't look sick". My teachers would get mad at me when she felt too tired to come to parent-teacher meetings, and I always tried to explain why, but I couldn't do it. And even now, she doesn't look sick, the only hint at it really is that she's sat in a wheelchair. She still sings along to music (out of time, and key, bless her) and laughs a lot, but she is sick on the inside.

Do you have your situation under control, or are you struggling with it?
I think we do have it under control, more or less. She won't ever get better, and it's likely that she'll get worse, but it's a slow process, which gives us all a chance to adjust and buy the equipment we need, like stair lifts, different wheelchairs, bath hoists and the like.

Kim's Mom & Dad
Do you have a good support system?
I think we do. My dad is a team leader at an air craft production place, and he knows some people who have disabled wives and children, so he talks to them from time to time. I have my boyfriend, and two friends who are absolutely amazing. So we all get through it as well as we can. We have good days and bad days.

Has your situation affected other relationships in your life?
My relationships haven't really been affected, but hers have. She used to be close with her aunt, who was near her age, and she had three friends she'd known for years. When she suffered that relapse, I think it was one of her friends from Sainsbury's where she used to work who was the first to go. She lived nearby, and still does, but she doesn't come round anymore. Then her aunt stopped visiting, then a while after her other friend left, leaving just one woman - the one who everyone here preferred and thought highly of - who she met when I was born. She used to visit every other Thursday for a chat and a coffee, but we haven't seen her since Christmas 2010. We were very surprised, because she seemed to be doing fine with mum's condition, but we've not seen or heard from her since. We all assume she moved to France. I hope that that is the case, but now all my mother has is us.

What do you do for enjoyment?
For enjoyment, I make things, and I write. I want to write more than anything else in the world, so I'm working hard on it. But otherwise, I make and sell my jewellery and hand-stamped stationery in my two Etsy stores, since it's the only way I can get a bit of money, and I watch movies and play games frequently with my boyfriend. We're obsessed with How I Met Your Mother at the moment, we just keep buying the DVDs!

What is your favorite attribute about your mother?
My favourite thing about my mum is her laugh, without a shadow of a doubt. She goes "Oooh hoooh hoooh!" When she laughs, and it's so funny. As bad as Multiple Sclerosis is, it's changed her into such a happier person. I think it's because it's taken away her ability to worry or fret over things, and as a result, she doesn't go a day without laughing at least ten times. And, the best part is, it's so easy to make her laugh. She never used to laugh much before, but I think that that was also partly because she knew what was going to happen to her eventually. I don't know how I could live with that thought, myself.

Kim, her sister & nephew, and Mom

What is it about your life as a caregiver that you want others to know?
I want people to know that it isn't just the disabled person who suffers. To be a carer, you have to sit by and watch someone you love go through something you can never properly understand without going through it yourself. It's difficult, especially when it changes the individual so drastically, and said individual is a figure of such importance to you, as your mother or father. And I also want people to know that the carer needs just as much support from their friends, and for everyone around them to understand that caring comes before going out and having fun. If you know someone who's a carer, buy them a pot of instant hot chocolate, a bag of marshmallows, and give them a hug.

How has being a caregiver changed you?
I can't really say if it's changed me or not. My mother has slowly gotten worse all my life to a point that I don't really notice it. I never really realised how bad she was until she was sat in a wheelchair. I like to think that it's made me patient, but I have a worrying feeling it's made me less so, but it has taught me the value of doing things while you can, and making the most of being able-bodied and -minded.

Have you learned anything about yourself?
I've learned that the simple things are important. Laughing, reading, drawing, being able to make rational decisions when I need to. Other than that, I don't think there's much else...

6 comments:

  1. Very touching and oh so true. Thank you so much for sharing.

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  2. Really great interview. Heartwarming story. I can tell how much you love your mom. Thank you for sharing with us.

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  3. Great interview. Thanks for sharing.

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  4. That was a very remarkable interview. I can totally understand Kim’s situation. Dealing with the situation is really tough, especially if it concerns a sick parent. You can get antsy, frustrated or even angry at times. But Kim was able to get hold of her emotions to take care of her mother. I think that is one lesson she was able to get from the experience. It will take some effort and patience to do the job, but because of her love for her mother, she is able to do it and care of her mother the best she can.

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  5. You’re a good daughter! I admire you for dedicating your time to take care of your sick mother. What makes this task hard is the fact that you see how your mother is getting weaker every day. Keep in mind the “value of doing things while you can”, and don’t get tired of taking care of your mother.

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  6. If there's one word to describe to Kim, that would be 'ideal'. She is a daughter every mother would want and deserve to have. Taking care of our parents is never an easy task in the first place. But when there is love, there's sacrifice. No one can provide care for parents more than their children.

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