Looking for someone who had a loved one with MS pass away
My mother is currently losing her 24 year battle with MS. She was only 31 years old when she was diagnosed with primary progressive multiple sclerosis. She had just divorced my father of 13 years and was in a new relationship planning a wedding. Her fiance' decided he was not equipped to handle taking care of her and her three young children so he dumped her. Devastated and broke she uprooted all of us from California to Kentucky to be with her sisters. There she met a wonderful man that loved her and her children unconditionally and decided to commit himself to a life of uncertainty.
Now we are almost 25 years later and my step dad is still by her side as we are waiting for her to pass. I moved back to California 17 yeas ago and have had to endure a long distance relationship with my sick mother (which has never been easy).
I just got back from a six day stay in Ky to spend time with my mother and say my final goodbyes. My heart is aching so much. Even though I knew this day would come it's still so difficult to accept. She is so young still (only 55) and so am I not to have a mother. I lost my father to kidney cancer 8 1/2 years ago at the age of 50. I don't understand why my parents only got to live into their 50's?? While I see all my friends who are around my age (30's) with parents still living healthy in their sixties and some seventies.
My mom tried every drug available, was hospitalized at least 40-50 times for various complications, went to rehab at least 10 times, was in a wheelchair for the last 16 years, and has had a feeding tube for the last 6. She suffered so much, yet always kept a positive attitude, hardly ever complained, and wanted to keep living.
Due to her inability to swallow several years ago she kept being hospitalized for pneumonia so her medical team agreed to insert a stomach feeding tube so she could get the proper nutrients from formula through the tube. She started out with 6 cans a day and then year and after year it decreased.
Last May was her last hospitalization when the team decided that there was nothing else they could do to treat her, and she had lost the motivation to keep trying. So she was sent home on hospice. For one year my step father fed her comfort meds and formula to keep her alive while her body lie bed ridden with a catheter and a diaper, and in constant pain. Then about a month ago her body would hardly take one can a day or any fluids. She became more and more listless and slept about 15-18 hours a day with no strength to even speak most days. So about 2 weeks ago our family had to make a decision I hope no one ever has to make; we had to honor the advanced directive and stop tubal feedings that was prolonging her life. Even though it is black and white when it comes to the advanced directive her case was unique for hospice because she was put on hospice with a feeding tube. Did we keep her on it too long? I guess we were all expecting her to pass away from an infection or pneumonia, and I think hospice did also. So when they say people don't die from MS they only pass away from other complications that is not true or is it?
I know this is a lot...but I am just venting and telling my story in hopes that maybe I can find another family that had to deal with a similar situation? There is such a wide spectrum of Multiple Sclerosis and I have not yet found a story like mine to relate to. I'm so sorry for anyone who reads this and hears the ugly truth to this disease
Now we are almost 25 years later and my step dad is still by her side as we are waiting for her to pass. I moved back to California 17 yeas ago and have had to endure a long distance relationship with my sick mother (which has never been easy).
I just got back from a six day stay in Ky to spend time with my mother and say my final goodbyes. My heart is aching so much. Even though I knew this day would come it's still so difficult to accept. She is so young still (only 55) and so am I not to have a mother. I lost my father to kidney cancer 8 1/2 years ago at the age of 50. I don't understand why my parents only got to live into their 50's?? While I see all my friends who are around my age (30's) with parents still living healthy in their sixties and some seventies.
My mom tried every drug available, was hospitalized at least 40-50 times for various complications, went to rehab at least 10 times, was in a wheelchair for the last 16 years, and has had a feeding tube for the last 6. She suffered so much, yet always kept a positive attitude, hardly ever complained, and wanted to keep living.
Due to her inability to swallow several years ago she kept being hospitalized for pneumonia so her medical team agreed to insert a stomach feeding tube so she could get the proper nutrients from formula through the tube. She started out with 6 cans a day and then year and after year it decreased.
Last May was her last hospitalization when the team decided that there was nothing else they could do to treat her, and she had lost the motivation to keep trying. So she was sent home on hospice. For one year my step father fed her comfort meds and formula to keep her alive while her body lie bed ridden with a catheter and a diaper, and in constant pain. Then about a month ago her body would hardly take one can a day or any fluids. She became more and more listless and slept about 15-18 hours a day with no strength to even speak most days. So about 2 weeks ago our family had to make a decision I hope no one ever has to make; we had to honor the advanced directive and stop tubal feedings that was prolonging her life. Even though it is black and white when it comes to the advanced directive her case was unique for hospice because she was put on hospice with a feeding tube. Did we keep her on it too long? I guess we were all expecting her to pass away from an infection or pneumonia, and I think hospice did also. So when they say people don't die from MS they only pass away from other complications that is not true or is it?
I know this is a lot...but I am just venting and telling my story in hopes that maybe I can find another family that had to deal with a similar situation? There is such a wide spectrum of Multiple Sclerosis and I have not yet found a story like mine to relate to. I'm so sorry for anyone who reads this and hears the ugly truth to this disease
goes out to you. 
fed
Comment