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Our NEW Normal…

19 Sep

I can’t tell you how many times what is “normal” for our day to day lives has changed due to this terrible disease that has stricken my husband.  But the big dates stand out!

April 2007 – his balance and gait became so unsteady and uneven that he could no longer walk normally or go any distance without fatigue.  Our future trips to some of our favorite places – fairs and amusement parks – now required a wheelchair rental.  And after pushing him around a few times I realized it required a motorized cart rental.

October 2008 – his cognitive issues became too severe for him to continue to work full time or at all.  The short term memory problems and the confusion that had crept in meant he could no longer do the job he had done for years and learning the new skills required to keep up with technology in his field was not possible.  After quitting his job because he confusedly thought he had another one lined up as a contractor (and did not actually have it yet) we spent 6 months trying to get him employment but after each interview he heard nothing and when I quizzed him about how the interviews went it was clear that he was not meant to be employed.  We applied for VA Disability in April 2009.

July 2009 – I lost my job.  Between all the calls and faxes I was receiving to support the VA claim for my husband and the calls I was getting from him sometimes 4-5 times a day because he was home and bored and concerned about what was happening.  Well they decided that I was not suited for the company and let me go.  So now we are both unemployed.  I was able to collect unemployment but at a fraction of what I was making.  Now we had all these bills and no real income.  I decided that since I knew my husband would get VA disability for the rest of his life and it was a sure thing he would be approved that we could cash in his 401K’s to keep us afloat in the interim.  We survived nicely.

November 2009 – VA Disability approved, paid back to April giving us a nice big check.  I am able to drop my husband from my COBRA saving us hundreds each month.  Things are looking up financially anyway.  He was only approved at 90% though and we knew he was unable to work so we claimed Individual Unemployability immediately and waited another 12 months for that to be approved.

April 2010 – my husband’s social worker at the VA Spinal Cord & MS Clinic asked if he received SSDI and I said I didn’t realize he could get both?  She said YES and so began that process, everyone told me to hire a lawyer that no one gets approved the first time.  But I filled out all the paperwork and submitted all the doctors records that we used for the VA claim.  It was pretty cut and dried, he was approved in 3 months time and without having to see a disability doctor at all.  Thankful I didn’t have to pay a lawyer a chunk of that since they paid him back to February 2009, over a year of payments.

November 2010 – Individual Unemployability APPROVED!  Also awarded permanent and total meaning I was eligible to get my health insurance from the VA program called CHAMPVA until I was old enough for Medicaid at age 65.  No more COBRA payments was a huge load off.

June 2012 – in October 2010 I tried going back to work full time.  I got a job doing on the road sales for a local newspaper and even though I hated the job it brought in enough money to really pad our budget and my unemployment was not going to last forever.  Again I received a ton of phone calls but since I was on the road and they were to my cell which was personal my employer was none the wiser about this.  But we live 50 miles from the VA and my husband really could not take himself there.  At first I only worked 4 days a week and so I would arrange my schedule around his appointments to be sure I could drive him every time.  But then in March 2012 they moved me to a different territory and told me the job was now 40 hours, 5 days.  I got my dad to drive him sometimes and we used VA transportation a few times but things just were not going smoothly.  One afternoon when he had been sitting at the VA for 4 hours after his appointment waiting for a van to bring him home and he had called me for the 12th time it felt like I decided it wasn’t working.  I left work to go get him and bring him home and I gave my notice the next day.  My business career was effectively over.

September 2014 – since they put him on a drug holiday in April things had been smooth sailing, until September 7, he stopped being able to walk, he was struggling to talk, his personality changed.  He went from being rather sullen and angry at times due to depression, to seeming rather mellow and happy.  Where before he would get angry when I told him he could not do something and tell me he would do it if he wanted now he just smiled.  When I yelled at him for not using his walker and falling down again, he laughed.  He stopped smoking cold turkey over night and has not shown any signs of withdrawal at all.  He eats what I make and stopped being picky.  Don’t get me wrong it’s nice to not have a grumpy, picky man acting like a child but it’s just not him.  Due to his changes in physical status and the falls, and his cognitive changes and ability to make good choices (like using his walker?) I am unable to leave him home alone.  So if I want to go to work my part time job 2-3 nights a week for 5 hours at a time, I have to get someone to stay home with him.  So far my parents have done it three times and my neighbor once.  I had to give up a part in a show with a local Community Theater as I cannot ask people to sit with him for something as frivolous as rehearsals.  I’m praying hard and often that this is NOT our new normal.

 

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8 Comments

Posted by on September 19, 2014 in Cognitive Loss, Daily Living, History

 

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8 responses to “Our NEW Normal…

  1. Marilynn

    September 19, 2014 at 5:13 pm

    I still remember all of our dates, but it took us 3 years to get approval from VA even through my husband was in for 23 years. I remember having to quit work to take care of him. He has lost the ability to walk back in 2009 and as of know I do it all. Wish I get get the friendly husband, maybe soon. Thinking of you and knowing wht you are going through.

    Liked by 1 person

     
    • marriedmonster

      September 19, 2014 at 10:28 pm

      He had three days of steroids last week and I’m hanging onto small hope that he will rally some and be more independent again.

      Meanwhile need to speed up the claim for aid and attendance.

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      • Marilynn

        September 20, 2014 at 11:53 am

        I was able to get aid and attendance during the final phase of the appeal, I have been during this for 12 years and I think I’m finally realizing I am going to have to hire someone or kill him (just kidding) I just feel like it’s all about him, his family just make it worse for me. I just feel like I am just forgotten in this mess. I’ve lost myself. Does the VA give him steroids ? this was never an option from our nero. We did get chemo, but I think the disease progressed so fast. he has progressive MS, now it just managing the systems. I hope the steroids help him, I know where you are coming from. I keep saying I won’t let this disease ruined my life, but I think it already has.

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      • marriedmonster

        September 20, 2014 at 2:05 pm

        Our Neurologist is the Dept Chief and very up on MS and Parkinsons as his specialty areas. He ordered the steroids and due to our distance from the hospital an at home agency administered which was nice.

        In addition to aid and attendance we are waiting for Adaptive Housing and Vehicle and several SMC’s all at the NY Regional Office and under review.

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      • Marilynn

        September 20, 2014 at 3:47 pm

        You should be able to collect on his SS I think as long as you are married 7 years or more. Just keep pushing for all your benefits, It took me about six years to get 100% but by then he had lost the use of both legs and I was doing everything on my own. Our Dr. just says all we can do is manage the disease. I have read all the research and most of the trials have been on RR MS.
        I keep saying I won’t lose myself but I thing it’s already happen. My husband is very selfish and needy and I myself just say I can do it all. I keep saying Im going to stop this, but I was not raised that way. I just want to walk away, but can’t. I hope to make a better decision. We don’t have any kind of support system or group that I could turn too. I too also gave up a career too, even when in the service every time we moved I had to change my life. After 23 years you just get used to it. But I regret this so much, all that I gave up and he doesn’t even get it. I hope the best for you and I know what you are going through.

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      • marriedmonster

        September 20, 2014 at 3:56 pm

        Thank you, I am lucky to have a decent support system. I too want to walk away at times but would never actually do it. Til death do us part, in sickness and all that.

        My husband is RRMS we thought maybe switched to secondary progressive but this feels like a relapse so keep on treating him as such I guess. Married 14 years and counting. 🙂

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      • Marilynn

        September 20, 2014 at 7:44 pm

        28 years and counting, thanks for talking and sharing. we’ll talk later, keep me posted

        Liked by 1 person

         
      • marriedmonster

        September 20, 2014 at 2:09 pm

        To this point I have refused to totally lose myself but I feel it coming. I gave up my career and I worry about what will happen when he is gone and his disability stops, I hope I can still find a way to support myself. It’s been nearly 5 years since I paid anything meaningful into Social Security. I will not get much back after another 20 years of this.

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