visionofvenus wrote:I am the mother and full time caregiver for my sweet daughter who was diagnosed in 2007 with MS. In 2008 she was rediagnosed with progressive MS. Her neurologist has told me he has only seen one other case this progressive. She is bedridden and has pretty much every symptom a person can have. she cannot use her hands because of tremors. she cannot walk or stand. She has no bladder or bowel control. She only uses Ensure for nourishment as choking has become such a problem. She has cognitive issues, short term memory problems, inappropriate behavior, cursing. She is 29 years old, was diagnosed at 23. I share the frustration I've read on so many web sites concerning the lack of information regarding end stage MS. Doctors are vague at best when I ask what to expect and I've searched the web for anything I can relate to and find nothing. My rant is this: I take care of her here at home and it does take up pretty much all of my time but I don't think it is crazy of me to want to do this. I believe most mothers would want their daughter with them as long as possible. I have 2 other daughters who are in their 30s, have families of their own and know that I love for them to visit as often as possible. My marriage is horrible but it was that way before my daughter became sick. I won't bore with details but it's important to know that we don't actually have a marriage and this was my husband's doing. He is very much to himself, always has been, and sits In his room all night on his computer and sleeps all day. Here's the point, one of my daughters and my husband suddenly have become resentful of my daughter and the fact that I devote my time to taking care of her, of being in her room taking care of her most of the time. They told me recently that I should put her in a nursing home which I will not do. Someday I may not have a choice but for now I want her here with me so I can have as much time with her as I can, along with the fact that for her, the thought of being in a nursing home is beyond devastating. She has said she would prefer to die than be put in one and I don't blame her. I have a huge family that all live within 5 miles of me and they all have an opinion about what I should be doing yet not one of them has ever offered to come over and help for an hour. Not one person in my family has read a book about MS which blows my mind. They all think they are experts about MS because they seem to know a neighbor who has an aunt with RRMS who is doing great so they believe if I would just force my daughter out of bed, which required a hoyer lift, and make her drink pureed veggies she would get better. This is tearing my family apart. I hear my husband being hateful to her and it makes me hate him. When my daughter was here telling my daughter with MS that she should go into a nursing home I was so hurt at how cold she was that I can't get past it. I feel like it is me and my daughter against the world. She knows the only person she really has is me. Imagine being in your 20s dealing with everything she does, knowing it will only get worse. the loneliness, knowing she'll never date or get married, never be a mother, all her friends disappeared as she became more disabled, being talked to hateful by family members who resent her for taking my time. I feel so much hurt and anger. I will lose my daughter after these years of watching her deteriorate which is enough to kill a mother and I know that when she is gone I will look at the people who were so unkind and hateful and I will feel such resentment. I know this isn't a question but I guess I needed somewhere to get this off my chest and see if there is anyone out there who has faced a similar situation.
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