Thanks to the many caregivers in my life, I don’t have to face my problems alone. It takes a special kind of person to spend time caring for someone like me.
I wanted to get some insight into my caregivers’ heads and share it with you. I asked them two questions:
What has been the hardest part about taking care of me?
And, what did you expect coming into my life?
I wanted to get some insight into my caregivers’ heads and share it with you. I asked them two questions:
What has been the hardest part about taking care of me?
And, what did you expect coming into my life?
Russell takes care of me all week addressing my every need without hesitation or complaint. He expressed that because he and I have become such good friends over the last year-and-a-half, it is difficult for him to see me hurting. When I hurt, he hurts.
Back in December of 2013 when Russell was just starting to take care of me full time, he was a bit apprehensive about all the responsibility he would be assuming as a 22-year-old young man. Russell hadn’t even successfully cared for a family pet and now he would be totally responsible for the well-being of another human being!
Russell has done an outstanding job caring for me and I am amazed at how we have bonded and how I have grown to trust him.
Back in December of 2013 when Russell was just starting to take care of me full time, he was a bit apprehensive about all the responsibility he would be assuming as a 22-year-old young man. Russell hadn’t even successfully cared for a family pet and now he would be totally responsible for the well-being of another human being!
Russell has done an outstanding job caring for me and I am amazed at how we have bonded and how I have grown to trust him.
Leslie is my hospice-appointed bath aide. She visits me two times per week. She confided that the hardest part for her is knowing that there is no cure yet for ALS, so she will lose me one day.
She confessed that she expected me and my family to be angry, sad and distant. Instead, she said that she has witnessed true love from my entire family.
Leslie’s visit is always a bright spot in my day. She has learned to share my love of some silly TV shows and we laugh a lot together.
She confessed that she expected me and my family to be angry, sad and distant. Instead, she said that she has witnessed true love from my entire family.
Leslie’s visit is always a bright spot in my day. She has learned to share my love of some silly TV shows and we laugh a lot together.
Linda is my hospice-appointed nurse who also visits me twice a week. She has faced some special challenges in taking care of me because she is at the mercy of “the system”. At times, she knew what I needed to make life more comfortable but she had to patiently navigate the system and wait for things to work out. I am sure she wishes she could just name what she needs for me and have it show up. Unfortunately, Medicare does not work that way. Fortunately, everything has eventually worked out as we needed it to.
Linda added that she expected me to complain and be difficult. Instead, she found me to be inspirational. She said that she always makes me the last appointment of the day so she can end on a positive note. I feel the same way! I like Linda to come at the end of my day so I can end on a positive note too!
Linda added that she expected me to complain and be difficult. Instead, she found me to be inspirational. She said that she always makes me the last appointment of the day so she can end on a positive note. I feel the same way! I like Linda to come at the end of my day so I can end on a positive note too!
Lori has been visiting me once a week since I stopped working. At that time, I didn’t need much hands-on care. She has watched my entire health decline and stood by me and encouraged me through it all.
Lately, Lori’s biggest concern has been being able to understand what I am saying because she helps me put together my blog posts. When Lori started visiting me back in December of 2012, I could still speak clearly and walk a bit.
Now, my speech has been compromised to the point that it takes a trained ear to decipher what I am trying to say and even with experience and training, it is still rather challenging. We generally manage to work through the conversation with the help of some context clues and spelled-out words. At times, we even manage a conversation with much depth.
When Lori first began coming, she expected to provide my wife with some free time so she could schedule appointments or run errands. When she committed to weekly visits, she wasn’t expecting a close relationship with me to develop and yet, Lori is one of my closest confidants today. When Laura told me that Lori was planning to visit once a week, at first we just planned to play games. I think that was like an ice-breaker. After a few weeks, we warmed up to each other and began tackling some deep subjects in our conversations. I think she has some material for a best-seller as a result of those tantalizing conversations!
Lately, Lori’s biggest concern has been being able to understand what I am saying because she helps me put together my blog posts. When Lori started visiting me back in December of 2012, I could still speak clearly and walk a bit.
Now, my speech has been compromised to the point that it takes a trained ear to decipher what I am trying to say and even with experience and training, it is still rather challenging. We generally manage to work through the conversation with the help of some context clues and spelled-out words. At times, we even manage a conversation with much depth.
When Lori first began coming, she expected to provide my wife with some free time so she could schedule appointments or run errands. When she committed to weekly visits, she wasn’t expecting a close relationship with me to develop and yet, Lori is one of my closest confidants today. When Laura told me that Lori was planning to visit once a week, at first we just planned to play games. I think that was like an ice-breaker. After a few weeks, we warmed up to each other and began tackling some deep subjects in our conversations. I think she has some material for a best-seller as a result of those tantalizing conversations!
My wife asked me what the most difficult part was about allowing all these people to come into my life and take care of me. I paused to reflect.
It has been very humbling. I used to be able to do anything and now when I need the most basic thing, I have to have someone else do it for me including the most private and personal things. It has gotten to the point where I cannot reliably swallow my own secretions so I have to frequently ask someone to suction my throat so I don’t choke on my saliva. I have had to come to terms with no longer being able to do anything for myself.
It has been difficult for me and my family to let people get such an intimate glimpse into our lives. The most difficult thing for me was allowing people to help me in the bathroom. Everything that takes place in that room is fairly intimate and personal. I had to allow someone to brush my teeth, shave me, bathe me and clean me up after using the toilet.
Each one of those things required me to give up a bit more of my pride as I was forced to recognize that I could no longer do an adequate job on my own. These special people have made me feel at ease relinquishing control in my life as they joyfully step in and take care of my needs. They have made things I thought would be hard, bearable; and the relationship I have with each of them has been a blessing that I would have never expected.
It has been very humbling. I used to be able to do anything and now when I need the most basic thing, I have to have someone else do it for me including the most private and personal things. It has gotten to the point where I cannot reliably swallow my own secretions so I have to frequently ask someone to suction my throat so I don’t choke on my saliva. I have had to come to terms with no longer being able to do anything for myself.
It has been difficult for me and my family to let people get such an intimate glimpse into our lives. The most difficult thing for me was allowing people to help me in the bathroom. Everything that takes place in that room is fairly intimate and personal. I had to allow someone to brush my teeth, shave me, bathe me and clean me up after using the toilet.
Each one of those things required me to give up a bit more of my pride as I was forced to recognize that I could no longer do an adequate job on my own. These special people have made me feel at ease relinquishing control in my life as they joyfully step in and take care of my needs. They have made things I thought would be hard, bearable; and the relationship I have with each of them has been a blessing that I would have never expected.
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