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Frustrations of Dealing with Limitations

Life at our house over the past month has been rather challenging.  My Mom was just diagnosed with ovarian cancer and lives about two-hundred miles away; so we have moved her and my Dad in with us while she goes through chemotherapy.  Lynn’s Mom has myasthenia gravis and suffers from extreme weakness all the time. She fell while home alone and got pretty banged up though fortunately no broken bones. His Step-Dad was diagnosed this week with lung cancer and has maybe six months to live…and it’s the holiday season.

As the primary caregiver for Lynn, not only do I deal with his physical health but his mental andemotional health as well.  All this bad news has been very difficult for him.  He is angry because he wants to help but is limited in what he can do.  For example, we had bought his Mom an emergency alarm button to wear but she was intimidated by how to set it up and therefore, it was not working when she fell. Lynn had tried to explain to her what she needed to do to start the service but she just shuts down when it comes to technical discussions. Therefore, he felt he needed to go to her house to make sure the system was functioning.  We climbed into the van and, of course, when we get there, his wheelchair couldn’t go inside. (I strongly suspected it couldn’t before we went.)  He was convinced that with the small metal ramps we have, he could get in. I could tell his need to make sure she was safe was over-riding his knowledge of logistics; so we went and I went inside to hook everything up while he waited in the van. His Mom couldn’t come out to see him so I became the liaison between them and made sure his need to see her safe was satisfied.

Now his Step-Dad is dying. His Step-Dad didn’t enter the picture until Lynn was an adult so it’s not the same impact as when his own Dad died with MS when Lynn was twenty but still, he’s known Ben for about thirty years and he is special to Lynn.  Tomorrow, we plan to load up and go to the hospital to see him to essentially say good-bye because we try to avoid hospitals as much as possible during cold and flu season to keep Lynn healthy, I’m nervous about going.  To visit face-to-face versus calling is a choice I allowed Lynn to make because, again, he needs the opportunity to satisfy his emotional needs as well as his physical.

Lynn has really become depressed with all the health challenges affecting our family.  He’s a tender hearted man and though he has great faith and knows each of them knows Jesus and will have a home in heaven, the grief he is feeling over their suffering and uncertain future is difficult for him because he has no control.  He’s trying to control his emotions and not add more to my load but I hear him getting angry and frustrated at minor things as he seeks to write on his book.  He’s sleeping a lot; he doesn’t feel well; he has no patience; and he’s making poor decisions regarding his own health (staying up till 6:00 a.m. while I take my Mom to the emergency room instead of going to bed and getting the rest he needs).  I’m trying to help him cope through humor and helping him find solutions that work for the both of us but I have to admit, my patience is at a limit, too.
Continue reading at: http://multiplesclerosis.net/caregiver/caregiver-perspective-the-frustrations-of-dealing-with-limitations/

Guest Blog

The following story is shared by one of my readers.  Though his wife did not have MS, his struggles as a caregiver are much like ours. 
My Struggle and Experience as My Wife’s Caregiver
by Cameron Von St. James
After my wife Heather was diagnosed with mesothelioma, I became her caregiver, and experienced all the struggles that go with it. Many times, my wife has tried to bring up the experience, stating she cannot imagine what I had to face, but I’ve only spoken to her about it once. Now I hope to share a bit more on my experience to help others who are facing similar difficult battles with disease.
Our only child Lily was born just three months before my wife’s diagnosis. She was a blessing, and we were so happy to welcome her into our lives. That happiness was cut short when the doctors diagnosed my wife with cancer. I was lost, unsure of how we could ever cope. I felt ready to breakdown and give up, just as the doctors began discussing medical options. That was the first day I remember feeling engulfed by the grief and stress of the situation, but it wouldn’t be the last.
Rage and fear were all I knew after the diagnosis, and I had no idea how to direct it, so I ended up taking it out on others, cursing and shouting. Perhaps it was the knowledge that I needed to remain strong for my family and the desire to not let Heather see my weakness, but I learned to control my anger so I could hide my fears from my wife and let her know she could rely on me.
Every day seemed like an impossible climb. I had to work my regular job, care for my wife, our daughter, our pets and our house. In the beginning, I was sure I would fail. I didn’t know how I would ever succeed, but eventually I learned to prioritize and accept the help that others offered us. Many of our family and friends helped us during this time. Without them, I am sure I would have drowned under the long list of tasks. Even with their help, each day was a battle.
One might think that a bit of time away from Heather and Lily would have been a nice break, but that was the worst time I can remember. Heather had to go to Boston to undergo a risky mesothelioma surgery. We sent Lily to South Dakota to stay with Heather’s parents and then Heather joined her after her surgery to recover and prepare for chemotherapy and radiation. Two months they were gone, and I was alone, as I had to remain behind to work and take care of the house. I managed to visit them only once.
After work one Friday, I drove through the night to reach them. Maybe it was my luck or maybe it was just life, but there was a snowstorm that night as well. I managed to get a few hours of sleep in the car while the plows did their best the clear the roads, but it didn’t help much. I was still exhausted when I arrived Saturday morning. I spent all of Saturday and some of Sunday with Heather and Lily before driving back home to return to work. I hated not being with them for those two months, but it was the right choice at the time. I couldn’t have given Heather and Lily the care that they both needed while working full time.
Everything that happened during this time was a challenge and a struggle but it all had to be done. The struggle taught me to accept help and take comfort in being able to make choices and decisions, even though they were difficult. Through everything, we persevered, and my Heather is still healthy after more than six years. I truly hope that my story can let those who read it and are struggling with cancer find hope.
 
Addendum: 
Heather and I participated in a short video about her cancer experience, and I thought it would make a great follow up to the article of mine that you posted a while back. We’re hoping to use this video to continue to spread hope and awareness to those who need it. If you wouldn’t mind sharing it with your readers, Heather and I would be so grateful. Here is the link to the video: Heather shares about mesothelioma (www.mesothelioma.com/heather)