Archive for Caregiver

My Trip to the North Shore

September 14, 2009 · Filed under Caregiver, Disability Awareness, Rett Syndrome, Understanding Rett Syndrome, Writing, Writing Memoirs · Tagged ,

Gregg, Mom, Karen and I next to Gooseberry Falls

Gregg, Mom, Karen and I next to Gooseberry Falls

My Mom, Gregg, friend Karen and I just returned from ourvacation on the North Shore of Minnesota. We had a wonderful time there.  I had never been to Duluth so I was amazed.  We stayed in a house that was beautiful.  I slept great there and was so calm.  I didn’t have nearly so much breatholding and hyperventilating as I do here.  It seems that being by a lake helps my body to be calm.  I loved it. I want to feel that way everyday!

 We went to a place called Gooseberry Falls.  It was amazing.  I could not see the waterfalls, but I could hear them, and I have seen the photos that we took. They are so beautiful.  There were trails that I could get pushed on with my wheelchair, so that is what we did.  I could hear the waterfalls. It was so perfect.  I think that was my favorite place.

 I also went on a boat tour of the harbor.  It was so interesting listening to the boat captain explain about everything that we could see.  It was so sunny and relaxing.  I learned a lot about ships and the Lake Superior that we were on.  It is a fresh water lake, but it is the deepest of all the great lakes.  It was cold in the water, but I was able to walk on the sand with Gregg’s help. It felt so good.  I wanted to sit down and play with the sand, like I have always done my entire life.  If I can touch the sand I sift it in my fingers.  It is fun to feel it, but I can’t stop my hands sometimes from putting it in my mouth.  That is frustrating because it calms me to play with sand, but it is gross in my mouth.

My feet walking in the soft sand along Lake Superior

My feet walking in the soft sand along Lake Superior

Gregg helped me walk on the shore

Gregg helped me walk on the shore

 

We went over the Airel Lift Bridge many times to get to our cottage. Here I got to be in a boat under it!

We went over the Airel Lift Bridge many times to get to our cottage. Here I got to be in a boat under it!

The boat was wheelchair accessible. It was very relaxing

The boat was wheelchair accessible. It was very relaxing

It was a trip that was much shorter because it was not so far to drive.  I loved it there.  I hope we can go again next year.  It is not impossible to go on a trip when you have a lot of needs, but it takes a lot of work for my parents and friend Karen who came with.  They worked hard to help me experience something new.  I am so glad for their love and support that gives my life adventure and experiences that I could never have on my own. It is always harder to be away from home, because things are set up so well at home, but when we are away I experience so many amazing things.  I love to be able to travel.

 Love, Karly

 

My Mom and I on the tour boat

My Mom and I on the tour boat

Gooseberry Falls, my favorite part of our trip

Gooseberry Falls, my favorite part of our trip

I felt so calm

I felt so calm

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I Sit Here Smiling

July 17, 2009 · Filed under Caregiver, Facilitated Communication, PCA's, Rett Syndrome, Rett Syndrome Intelligence, Understanding Rett Syndrome, Writing Memoirs

 

Here are some of my memories of camp in Iowa.

 

There was a dance

There was a dance

I have never been in a golf cart. I loved it.

I have never been in a golf cart. I loved it.

Emily has a rare talent. The basket is filled with my laundry

Emily has a rare talent. The basket is filled with my laundry

Ashley was so kind to my new friends

Ashley was so kind to my new friends

My Mom read my script. I had worked on it for 3 months in advance.

My Mom read my script. I had worked on it for 3 months in advance.

My Mom and Gregg love me so much. I was so glad to be there with them.

My Mom and Gregg love me so much. I was so glad to be there with them.

I was able to be in the last worhsip time with my friend Deb. Scott played such beautiful music.

I was able to be in the last worhsip time with my friend Deb. Scott played such beautiful music.

I have joy today.
Love, Karly

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Taking Time to Remember

March 24, 2009 · Filed under Caregiver, DSP's, Disability Awareness, PCA's, Rett Syndrome Intelligence, Understanding Rett Syndrome

I wrote my first blog March 26, 2008.  It has been nearly a year, and much has happened.  I don’t feel very happy today. Not only is it raining, but one of my best friends, who was suppose to come today, didn’t.  She is home sick.

I try to imagine what I would be like if I didn’t have my disability.  I imagine I would have a busy life.  It would be full of school and learning,  and friends, and school breaks where I get to go to warm places.  A car of my own. Interesting activities. Food of my choosing, without limitations.  Easy access to family and friends through email, and cell phones, and texting.  Independent of my Mom’s support.  I would have energy for my own personal interests, which I am sure would be many.  I may even be married by now. 

I hear other women, who are in my life because they help meet my needs, talking about their lives.  They try to fit me into their busyness.  My needs require energy and willingness. Many times I need extra help to even eat and drink. 

If you have read other blog entries I have written, you will know that most days I am content.  Today, I am grieving. I am sad for me, my Mom and step-dad.  We have had four people who I am dependent on to even live, cause us great grief and stress in the past week.  They are just meeting their needs. They want us to be undestanding, and accomodate them.  It is a simple request. If it was just one, on occasion, it wouldn’t be so devestating.  But to have four in a row, not fulfill their promises, is devestating.  I can think of no other word.

If my life were full of what it could be, or I was a typical person, these little setbacks wouldn’t be so disappointing.  I look forward to what would be so simple to others, with great anticipation and excitement.  Most people don’t mean to be hurtful, but since I can’t go to them, or pick up the phone and call, I am left to their thoughtfulness.  It is often lacking. 

Most people expect that my Mom will just keep on doing whatever it takes to meet my needs and that if it doesn’t work out for them to come, it isn’t a big deal.  What they don’t know is how incredibly hard she works everyday to meet my needs, and sacrifices so many things about her own life in order to give me a life of value.  When people expect her to pick up their lack, it takes away from the very little time she has to relax, let alone leave and go for a walk by herself.  She gets so weary and because she’s my Mom, she keeps going no matter how exhausted she is.  Because I cannot live without care, this is so painful for me.  I hurt inside, seeing how much sacrifice she makes for me.  In addition to that, my step-dad has been taking time from his work to help us.  I love him for it and yet it’s not the life any of us deserve.  When people who we are counting on, don’t respect how much of a burden they place on my family when they are inconsistent, causes me so much grief.  It makes me weary of living. 

My sister has moved far away. I rarely see her and I miss her.  I hate to feel like my life is just a burden to others.  That meeting my needs is  just a paycheck to people, and yet the only people I see besides my Mom and step-dad everyday, are those who are paid to be here.  That is more than I can take. 

Karly

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Bringing In New People

March 5, 2009 · Filed under Caregiver, DSP's, Disability Awareness, PCA's

This past weekend was full of training for my Mom.  We hired a new woman to be with us for a few months until her sister returns from Australia.  I love her.  I want to see her more often.  She will be with me two weekends each month.  For those of you who do not have caregivers in your lives, I thought I could share something that might give you some insight. 

We have had some absolutely wonderful women in our lives over my lifetime.  It was just my Mom until I was five years old.  Then my aunt Martha came a few hours each week.  It gave us an idea of what is was like to have people in our home caring for me.  She made it easy because she was family.  She was with me a few years until it was time for her to go back to school.  We have had people over my life who have been friends who worked for us to care for me.  It has been a few years now since we have hired friends.  Usually they are strangers or friends of people we know.  We don’t live near a college or in the city, so it’s hard to find people.  They have to drive to our house. 

We have some women who have been with us for many years.  Since we are dependent on a team of women to assist me, it is always an effort to keep a full team.   It is not easy to find new people.  It takes a long time to give them all the information they need to know.  It is not something that is easy for my Mom to do anymore.  She has trained so many people in over my lifetime, and we have tried to welcome everyone.   We have had women who have hurt me when my Mom wasn’t here. We have had people steal from us.  One of them took my Mom’s credit card and with her husband got a lot of money.  They were not convicted because they knew how to not get caught, but the police had proof that it was her that stole my Mom’s credit card.  She is a massage therapist, and cared for me many hours every week.  She brought her husband into our home when my Mom wasn’t here.  I had a young woman step on my hand and try to cover it up when my Mom noticed the blood and bruising.   I got swung so hard in  my swing that I hit the post, and got a dark bruise over my back. 

If I didn’t need people to come into my life and help care for me, I would be glad.  There have been many times that I wasn’t able to share with my Mom what it was like for me when she wasn’t here because I wasn’t being abused, but the person I was with was very difficult to be around.  I love many of the women who have cared for me over my life, so I don’t want to have you think that all people are like that, but I am still opening up my life and our families lives to other people.  They often cause concern and at times great joy. 

I have written a lot about caregivers lately.  It has been a time of grief in our lives related to two people who have left their wounds. My Mom and I spend a lot of time together now, and I love that, but it still takes many people to care for me.  Some people say they are interested and can’t wait to come and work with me, and then never call again.  If that happened to them, it would probably upset them, but somehow, it is acceptable.  Families are affected greatly by people who are in their lives.  If they are irresponsible, disrespectful, have no boundaries around acceptable involvment it is difficult for us. 

I want to end by saying, thanks to the wonderful women who I have in my life now and have had in the past, who have shown me great respect and care and love.  You made our lives better. Thank you.

Love, Karly

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Moving On to Better Things

February 11, 2009 · Filed under Caregiver, DSP's, Disability Awareness, Facilitated Communication, PCA's, Rett Syndrome, Understanding Rett Syndrome

I am sitting here with my Mom this morning trying to express what is in my thoughts.  I have had a hard week.  My Mom is on a leave from her job so I can be cared for.  When someone walks away from our lives it leaves an enormous challenge for my family. If you need direct care and are reading this, I imagine you have experienced this too.  We are trying to find people with a higher standard for themselves. People who are compassionate and caring.  I want to say that I know my Mom has sacrificed so many things in order for me to have a quality life at home.  It has cost her a lot.  I am so glad that I still live at home.  I know there is no perfect place to live but being with family is so much better than some grouphomes I have visited.  I hope to be in a small home someday with a great friend.  I know that day may come when I will be leaving home, but I am so grateful in the meantime to be here.  We have little support right now, so it is hard, but I am praying for GREAT women.  If you have great care, you are very blessed.

Love, Karly

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I Can’t Imagine Why

February 8, 2009 · Filed under Caregiver, DSP's, Disability Awareness, Facilitated Communication, PCA's, Rett Syndrome, Writing Memoirs · Tagged , ,

One of the things that has helped me this past week, is writing. 

If you are fortunate enough to have great caregivers who you can count on no matter what, you are fortunate indeed. For those who have younger children in need of extra care, it is hard enough, but for those of us who have grown into adults and still require direct care in order to live and have meaningful lives, it becomes nearly impossible to find the care we deserve.  Our bodies are big, and have adult needs.  Our care is constant. 

Many young girls with Rett have extended families and friends who are actively involved in their care.  By the time I was 15, anyone who knew me and wanted to be involved in my care, had done so.  They were no longer able, and in many cases, uninterested to care for me.   My care frightens many people, not because it is so complex, but because they perceive it to be.  As a result we rely on strangers. We ask lots of questions and do lots of training and have been so disappointed lately. 

The person that walked away last week responded to an ad in our church advertisement paper.  She could be very caring, but to have her walk away without indicating that there was an issue, or even saying goodbye, causes me to not trust people.  Their words are sweet and smooth. They act so nice to me around my parents, but are often quiet and go about caring for me like they would the family dog when we are alone….feeding, toileting, minimal entertaining. 

My Mom is exhausted.  We now have two people who are gone.  She of course will do her best to care for me.  She cannot work at her job and be with me.  It is forcing her to make a decision. 

I speak on behalf of all my silent friends, when I say to caregivers: If you think this is a job you can do to earn some money, you need to check your hearts. If you are NOT caring, genuine, upbeat, reliable, honest, ethical, able to communicate problems as they arise, able to realize what families give up when they bring you into their home, then STAY AWAY.  Work at a shelter and take care of pets, and find out who you are.  Don’t pretend to take care of humans!!!  We have needs for companionship and intelligent conversation and accountability. Stay away  unless that is who you really are.

We are hurt more by your actions than by all the struggles we face as individuals living with involved disabilities.  Our lives are open before you and we deserve honor. Our families deserve respect.  We have a difficult path here on earth.  We need real, genuine and caring people to be in our lives.

And again I pray, please come quickly.

Karly

P.S. I have some wonderful women who have been with me for a long time, even some new ones who help out on the weekends, that I love and respect.  We are very grateful for them. We couldn’t do life without them.

Karly

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Hope For the Future

February 6, 2009 · Filed under Caregiver, Companion Horse, Disability Awareness, Facilitated Communication, Rett Syndrome, Understanding Rett Syndrome · Tagged ,

It has been a bewildering week. The main caregiver I had during the week left and hasn’t called us, so we don’t know what the problem is.  I counted on her for 9 months.

I am expected to be comfortable around my caregivers.  If they only knew what I have experienced at the hands of caregivers in my lifetime, they would be amazed that I could trust at all.  Yet, in their need to be respected, they expect me to just go along with them.

They see me in my most difficult times and are with me in my times of accomplishment and great joy.  I never see them in their private lives.  I only see them in my home.  They are very eager to keep their lives private.  They are at our table for family celebrations and with me at the Dr when I am too weak to hold my head up.  My life is open to them.  They expect it.  I don’t understand how that level of involvement can be so easily dismissed by them. 

I am wondering if I am only a source of income for many people. They say the right words to my Mo, but their actions deceive them.  It is hard to count on people who are so heartless. They expect respect and trust from us, but are so disrespectful and act unworthy of trust.  It is incredible that there are people like that provding care to those of us whose very lives are dependent on them.

My hope for today is to find someone who is eager to be with me, who sees my talents and want to help me to be the best person I can be.  My Mom is that person for me, and we need help. It is too much for her alone.  I need people who care and would NEVER walk away without saying goodbye, who think to much of me and themselves to leave us hanging, wondering what happened.  Someone who doesn’t come with so many burdens of their own that they don’t know how to involve themselves in my life in a healthy way.

I have many reasons to be alive.  I don’t want to be a burden to anyone. So my hope and prayer for today is to find someone who is eager to be my helper. Someone who can see that my life is valuable…as much as their own. That God has given me a great family and friends and a beautiful little horse, who has cats!  Someone who wants to be involved.

Please come quickly.

Karly

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Waiting For Someone

January 25, 2009 · Filed under Caregiver, Disability Awareness, Facilitated Communication, Rett Syndrome, Rett Syndrome Intelligence · Tagged , , , , ,

It is a sad day for me.  We waited on Friday for the person who was suppose to come at 2:30.  My Mom was here because there was a therapist at our house for me.  My caregiver Stephanie, waited until 2:45 to leave for her other job.  The person we were waiting for never came, never called and never resonded to our two calls.  It wasn’t until Saturday morning at 11 that she called with her story.  It was a family drama and she didn’t have her cell phone to call us, blah, blah, blah…It may be true, but she left us in a bad place.  She has not come for many of her shifts lately,  so we let her go today.

I have a message for people like her.  If you really want to care for someone,  you need to have some responsibility.  Your actions are very hurtful.  I have let you into my life, sometimes because you are my only option.  You have seen my most private moments.  You have been with me when no one else is around.  My life depends on you.  If you choose to ignore me while I am sitting on the toilet, I can’t get up and leave.  If I am eating and I run out of a drink, I can’t even tell you because you haven’t taken the time to learn to communciate with me.  I depend on you to initiate the questions.  If my bath water is too hot, I can’t change the temperature.  I get so hot I get sick, and I wait until you decide to take me out.  I am so aware of scented body lotions, fabric softeners and hair products that stink, and I can’t get away from you, when you are brushing my teeth or changing my clothes or helping me stretch. 

Our relationship is dependent on you taking the lead.  You have not acted like a leader.  You left me hanging.  I would be in a desperate spot if my Mom wasn’t available, like it did when she and my step-dad were out in South Dakota.  It makes me very sad and anxious to be disrespected like that. 

Since I am able to communicate I share this on behalf of my silent friends and their families everywhere.  If you have drama, or compulsions, or addictions in your life, you bring them into my life.  You may be a wonderful person when you are on a good day, but when you aren’t, you are a huge grief to us. 

Where are the kind, stable, respectful people?  I can’t speak badly about most of the women I have in my life now. They are my allies. 

 I also cannot ignore how sad I feel today.

Karly

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