This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Everyone,

I wanted to try out a forum to see if there is anyone else who feels the same way I do.

My mom was diagnosed with MS 28 years ago, and for the last 5 years we have seen her deteriorate rather quickly. She lives in a care facility and is wheelchair bound. In the last 5 years she has had 3 surgeries to try and rid her of Neuralgia in her face, which has been causing her excruciating pain.

Last week she was told by her eye doctor that they now suspect that she has a tumor on her pituitary gland. We've had many discussions in the past about her final wishes so it came as no surprise to me that she told me she would not accept treatment it if was found to be cancer. What came as a surprise were my thoughts to myself.

The neuralgia has returned for a 3rd time after surgery and they will not operate on it further. No one wants to see someone suffer like she is, and part of me wishes it would all be over for her soon, but I can't bare to think of a world without the most inspiring, determined and strong woman I know.

Is it wrong to wish for death when there's no other hope to end ones suffering? I am the only person she has left and I want to be as supportive as I can, but she's been telling me more and more that she wishes it would just end already. How do you cope with such mixed emotions?

Thanks,

Welcome to ThisIsMS, FeelingAlone. My personal opinion is that your thoughts and those of your mother are perfectly reasonable considering the situation she is dealing with.

I do not think that doctors are as all-knowing as they would have us believe. There are new discoveries about the body and disease every day – GI ulcers are known now to be commonly caused by the bacterium, H pylori, and not "stress," as we have been taught for decades. There is question now if cholesterol really causes heart disease – the CRP test for inflammation in the body is a better predictor of heart disease. I think MS will be found to have a totally different cause from autoimmunity.

But until the answer to MS is found, we (people with MS and those who care about us) can only take one day at a time and do the best we can with it. You will be supportive of your mother and cherish the time you have with her.

I personally think that diet is very important in MS (You might find the "Diets" forum interesting here. Or even the story of Dr. Terry Wahls on her website, http://www.TerryWahls.com)

MY method of coping with this awful disease is prayer and reading on MS-related articles. But our outcome is not completely in our own hands; may you find the strength you need for your situation. You may "feel" alone, but you are NOT alone – you have found friends here at this website now. We have some very good listeners here any time you need us. All the best to you.

I can relate. Was a caregiver for my father, who had very serious complications from diabetes. It's natural to feel badly for either wanting their suffering to end, or to wanting them to continue living through the pain so you don't have to say goodbye. When he did pass I was relieved to see the suffering end, and devastated to see him go. When dealing with a sick loved one, the grieving process tends to begin while they are still living. This is difficult enough; don't burden yourself with unnecessary guilt as well. Take care.

My aunt had MS and I saw her go through many unpleasant years. I wished for it all to end for her and the family felt a kind of sad relief when she did pass.

MS has to be one of the cruellest diseases and as I sit here partially sighted from the ON brought on by MS and thinking about my own future I know that if I was no longer comfortable in my body and my bad days outweighed my good as much as I love my family I would want to go too, I would hope they would understand and know that I did not love them any less, there is only so much fight a person can have before they feel that the odds are stacked against them:(

Its so hard when you want your mum to be here because you love her so much but equally want it to be over for her as you know that's what she wants . I don't know how people deal with these 2 very conflicting emotions as they are so far apart.

Even though its hard I would wish for the best thing for you mum even if I didn't want that:( Maybe because I have MS and if I was in that situation that's what I would want but maybe other people would take a different view.

Either way my thoughts go out to you. 28 years with MS is a long time, your mum sounds like a strong brave lady and I hope you are very proud of her xxxx

Feeling Alone,

I found myself in a similar situation to yours back in 2007. My wife had suffered from MS for some 35 years and she was steadily going downhill. Watching the disease take her a slice at a time was very difficult to watch. She didn't have cancer in the end but pancreatitis. When they were about to insert a feeding tube to treat that, she suffered a heart attack and died 2 days later in the ICU. She did not want any treatment that would prolong her suffering and we let her go peacefully.

As difficult as it may be, your mother's wishes should be respected in terms of what treatment she wants or doesn't want. Nobody wants to see someone suffer for a long time and wishing that the end would come to relieve that is not an uncommon feeling. I hope you have a lot of family and friend support around you in this difficult time because that really helps.

Harry