caregiver
By Lisa Emrich - October 12, 2016
... for ‘other’ people dealing with patient and caregiver issues. On Saturday, I attended an all-day conference with a family member who deals with multiple chronic conditions. At this particular event, I had very little in common... with the patients in attendance. I didn’t have the primary disease being discussed and I didn’t know ‘everything’ there was to know about the disease and its treatments. I was simply a typical caregiver or family member who...

caregiver
By Donna Steigleder - October 21, 2015
...What do you see when you see me? Do you see what I’ve come to be? Do you see the mask I wear That hides the truth of all I bear? Do you see my strength, my skill My constant running all uphill? Do you see my desperate hope That with each change I still can cope? Do you hear my envy when You speak of going out with friends? Do you know that I rarely rest In trying to keep up and do my best? How I long for days of past Coming to work and leaving...

caregiver
By Donna Steigleder - October 13, 2015
...I am obsessed with Lynn’s skin. Many years ago I worked as a home health nurse and I saw some terrible bed sores that started out small and then progressed to craters. Some of the patients had their entire backsides destroyed. Most of the breakdown, I expect, was due to inattention but some was also due to poor nutrition and just the disease process the person had. With progressive MS, secondary or primary, the person often is in a wheelchair...

caregiver
By Donna Steigleder - July 25, 2015
...Please do not read this if you are not a caregiver. I do not want to cause anyone with MS to feel guilt or pain because you cannot help having this horrible, horrible condition if you have secondary or primary progressive MS... is. This is the life of a caregiver whose spouse has end-stage MS. I strive to keep him healthy, alive and encouraged each day and will continue to do this for as long as I can because I care and I love and I hope for a better tomorrow…and will do all I can to prevent a worse one....

caregiver
By Donna Steigleder - August 11, 2015
... and their caregiver slam into a wall. In addition to trying to cope with the changes that occur from the loss of a function, there is also the loss of the dream. Lynn was a musician, an awesome tenor, and an extremely talented carpenter... caregiver but he struggled to find any purpose. Fortunately, his son suggested he try to write fiction since he used to love to write when he was younger. He tried it and now has published two books, Rising Tide and Eden’s...

caregiver
By Donna Steigleder - July 11, 2015
... limited. I go into work away from my caregiver responsibilities once a week. That’s my only time away from him other than a quick trip to the grocery store, pharmacy or library. Nowhere else do I go…and I get tired of that. I... tolerate it. I can’t get an aide or assistant caregiver because they are too expensive full time so I must work and do his care on my own. If I were to retire (I’m almost 58) then we would not have enough money to continue...

caregiver
By Donna Steigleder - June 2, 2015
...During my nursing training, I was introduced to Dr. Elizabeth Kubler-Ross’ five stages of grief and loss related to helping patients and their families as they experienced dying and the loss of a loved one. Since that time, I’ve come to realize that those five stages of grief are not exclusive to death and dying. We experience the same emotions whenever there is a significant loss, including the loss of what “should” be. I would suggest that most...

caregiver
By Donna Steigleder - May 3, 2015
...,” describes for me how I see my life in times of crisis. I carry the burden for us both.  I let him rest and fight the disease and I become his strength, doing all the things he can’t do for himself, being his defender, being his advocate, being his cheerleader and prayer warrior. That’s what I think it is to be a caregiver....

caregiver
By Donna Steigleder - March 25, 2015
... that. Before I became a full time caregiver/employee; I was a full time employee. I was excellent in my job. I received a great amount of praise; people came to me for advice; I was even Employee of the Year once upon a time.  I... to be a caregiver, there is a lot of suspicion about how much you’re working. I overhear comments such as, “All Directors need to be on site so they are visible and easy to access.” “How do you support your staff or know...

caregiver
By Donna Steigleder - March 11, 2015
...Lynn and I had to make a very difficult decision this week– whether to cancel our summer vacation or to go as planned.  Now, on the surface that might not sound like such a big deal, but it was.  Since the children were small, we have been going to the beach in North Carolina for a week during the summer.  It’s the only type of vacation we take all year. Now that the children are grown with families of their own, we still invite them as our...

caregiver
By Donna Steigleder - February 25, 2015
...I have not always been a full time caregiver.  As I look back over Lynn’s journey through the maze of MS progression, I have had different roles along the way. On the Outside Looking In Role For several years before he... (by that point he was dependent on a wheelchair and needed me to position all his limbs). The 24/7 Caregiver Role Then came the “fall” where he was unable to get off the floor for three hours, followed by a misdiagnosed kidney...

caregiver
By Donna Steigleder - January 27, 2015
...While I know people are well meaning, when they remind me to “take care of yourself,” I honestly want to ask them, “Now, how do you suppose I do that?” People who have never been full time caregivers while jointly being... the next day off and leave them to their own devices.  Well, that’s true too for caregivers. The only difference is that when you’re a full time caregiver, there is never a “next day” when the illness has passed and life goes...

caregiver
By Donna Steigleder - December 26, 2014
...Lynn’s Step-Dad has only days or maybe hours to live. Just one month ago, he fell and had a lot of pain afterwards that did not get better.  He went to the doctor about the fall and when an x-ray was done to check for broken bones, it showed cancer.  The CT that followed showed tumors on his spine, in his lungs and 17 separate tumors in his brain. The oncologist recommended radiation as a pain prevention option but his Step-Dad did not tolerate...

caregiver
By Donna Steigleder - March 3, 2015
...As a caregiver, I understand that my role involves providing a lot of physical care.  For any caregiver, how much care is provided depends a lot on how significant are the limitations of the one for whom you’re caring..., frustration) may trigger a mental health response (depression).  The bottom line is that as a caregiver, I have to be aware of all the “soft” care needs he has and try to address those along with the “hard” care needs in order to achieve a healthy life balance.  It’s not easy but doing so certainly improves his quality of life....

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