Hello all!!! My wife, now 39, was diagnosed with MS back in 2001. Prior to 2001, she was full time on-the-go home schooling mom of 3 kids but started to get dizzy spells, vision problems and was eventually diagnosed with MS. Since that day our lives have changed and continue to change as the days go by. Unfortunately for us, her MS has been very progressive since the beginning and her condition slowly began to worsen more and more. We have been on all the ABC drugs, Tysybre, and even chemo.
Over the last 3 years, she has lost the ability to walk, has a full time catheter and about 8 months ago stopped talking. This has been the hardest thing for me and my kids. In addition, during this time she's had viral meningitis which brought on seizures, a shunt due to Hydrocephalus (water on the brain) and multiple urinary tract infections. As far as MS, it is really difficult to tell anymore when she is having an exacerbation because when she is felling bad it is normally associated with a seizure or UTI.
As you can see it has been a rough ride and I am sure that I am not the only one in the same boat.
I have been really blessed because my daughter (now 18) has been a lot of help helping me care for my wife while I work. Now we are soon to be crossing a bridge that I am not sure how we will make it across. My daughter will be soon moving out leaving me with no one to help me care for my wife. Unfortunately, my insurance (retired military) will not cover long tem care or a long term caregiver. Also, due to the fact that my wife does not have enough work points, we can not apply for SS benefits or Medicaid. I really don't know what to do. As a single income family, money is tight as it is without having to pay someone to help.
I know that God will take care of everything but I am feeling a little overwhelmed with everything. Any support, advice or encouragement would be greatly appreciated.
I am so so so sorry. I don't know what to say!!! I am terribly sorry. Have you considered contacting your local senator? I have heard that on occasion, a senator can intervene for you and contact your insurance. Discuss that fact that you were in the service. Since you are working, you are paying into the social security system. As a spouse, your wife needs to benefit from that as well. You may want to try and contact an advocacy group in your state and see what they recommend. I wish the the very best of luck.
My thoughts and prayers are with you.
I’m so sorry your family is in this terrible situation. I’m afraid I don’t have any advice other than what’s been provided already, but I wanted to offer you my support and welcome you to the board.
You have really been going through alot. I really feel for you. Your a wonderful person for sticking with you wife and trying to find solutions. It is always good to know that your loved one is there for you. I wish I could help you out. Just know we are here for you.