Posted 10/30/2014 10:04 PM (GMT -7)
I've never really posted on forum to help me deal with some of the emotional challenges of dealing with someone I love dearly, and seeing her suffer. My mom is a wonderful and amazing woman. She has been diagnosed with MS for over twenty years. She tried everything. The ones I know of Avonex, Betaseron, copazone, gilenyia, rebif, Tysabri, acthar gel, and most recently, tecfidera. I'm 28 and many of my teenage years I spent oblivious to how hard it must have been for her. I remember the vials in our refrigerator and trips to Vanderbilt or to this Specialist or that one. 4 years ago my mom had to retire from being an RN -an awesome one at that. Her mind just couldn't keep up with all of the challenges. She found a doctor that helped to get her approved for disability, along with a lawyer and special help from a State Representative. I moved closer to home and stayed close knowing the day would come she would need extra help. It came earlier this summer about 4 months ago. A lot sooner than I expected or imagined.
While I knew she had been having some trouble walking usually her meriwalker helped her to keep up, and allowed her to rest when needed. Her ex husband divorced her and took their home. I helped her move into her own apartment. (I also tried to get her to move in with me and to get a lawyer to fight the divorce-i was unsuccessful at convincing her of either) I helped her with her choice of transition And drove 40 mins to twice a week to check in on her. Get her groceries, help her with tasks, bills, etc. about two weeks in that's when I started seeing subtle changes. Checks written double, dishes in wrong places. Then I got call from the landlord telling me she was worried about her.
I drove quickly to her apartment. I I've never really posted on forum to help me deal
She said "your mom is driving really slowly and looks even though she wasn't supposed to be driving but walked in and my mom was covered in blood all along her neck. I calmly sat down beside of her and asked what had happened. She said... "What do you mean?" I told her it was okay and reassured her I wouldn't be mad, but she really had no idea what happened. I got a mirror and showed her. She acted shocked. The land lord told me she had seen her down near the mailbox very confused and lost looking. I tried to get her up but her legs were like jello. I called an ambulance.
The most shocking thing to me is how they treat you in a hospital when you have MS. That day mom could not stand up and she was void of what was going on around her. We waited, did blood tests, and a CT and they discharged us and told us to go home, saying she had a preexisting condition and that they had no medical reason to admit her. So at 1am in the morning I took my mom back to her empty apartment. I was totally lost about what to do next. She had been "fine" last week. I had to be at work at 8am the next morning, needless to say I called in. We went through home health nurses, physical therapy, everything possible. I worked with her pdoc to try to get her admitted for rehabilitation therapy. That was another battle in itself. Trying to get "3 qualifying" night stays in a hospital that tells you they can't even admit you with a preexisting condition but needed a reason other than her ms symptoms to even admit her. All I have to say is there were some closed door meetings and a few angels that knew how to maneuver around red tape for me and for her. But... She's now been under skilled nursing care for 100 days as of tomorrow. They are discharging her under medicare regulations from skilled services and over onto the medicaid funded portion of long-term care. She has steadily decreased in function these past 100 days. Slurred speech, incontinence, inability to understand what she is hearing, and sometimes even what I write. It takes her a few minutes to comprehend. She can't hold herself up or stand at all on her own anymore. She leans to one side in the wheelchair. Just lots of things. The MRIs show severe brain atrophy in her frontal and temporal lobes from the demylenation associated with MS. With how fast it happened I had her tested for other things to, with negative results. At one point i even put her under hospice care, then pulling her off so that we could try a new medicine (tecfidera- but it made her sick and she wouldn't eat for almost 4 days. I decided quality of life and took her off of it) now I am struggling with the decision to place her under their care again. But they are giving me time
I get increasingly frustrated with the nursing home staff because I hate seeing her like this. I struggle with deciding whether or not to end my career and bring her home to take care of her but I don't even know if I could do any better. And yes, I'm pretty alone in all of this as an only child. I have family but many of them like her dad and brother live 4 hours away-(they come to visit or help about once a month though) and other family from afar have came in occasionally also. But day to day and all of the decisions about medicines, hospice, where to care for her, etc fall on me. Everyone keeps telling me "I'll know when its right". Everyday it gets harder as I realize she's never going to be the same again. But I go back every other day and do as much as I can for her. She has always been there for me.
Anyways I guess that was pretty long but thanks for taking the time to let me share my moms story with you.