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Monthly Archives: September 2014

Striking a balance

These days I am feeling more like his mother than his wife.  I have to tell him to eat, serve him every meal.  I have to do 2–3 loads of laundry daily.  I have to remind him to use his walker, over and over and over.  I have to help him shower and dress.  I have to put my foot down when he is being ridiculously stubborn.  I feel like I am chastising too much and yet these things are essential to his health and well being.

I am trying to find the balance, to speak kindly, to keep him in the loop on all that is going on with the doctors and appointments and assistance that I am requesting.  I try to carry on like it is a discussion even though he cannot keep up his end and I know he won’t remember.  I try to make him feel part of the decisions.  I try to remember to be his wife and not his mother.

It is very hard sometimes.

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Posted by on September 30, 2014 in Cognitive Loss, Daily Living

 

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Status Quo

The status quo has changed around here for sure.  The latest attack that my husband has had really altered his personality.  He is pleasant, laughs at everything (lability) and has not been getting angry at anything.  This is very much out of the normal for him as he tends to be pessimistic and angry a lot.

He also can’t really walk very well, the stubborn part has not left him and he refuses to use the walker 90% of the time.  This means that he frequently falls. Thankfully he has not hurt himself with these falls.  YET.

He is not able to drive.  I made that decision due to his slow reaction times and the number of things he hit and people he nearly ran over the last few times out with his power chair.  His truck keys are very well hidden and I am firm on this.  After a visit with his neurologist on Tuesday the doctor agreed that hiding the keys seemed like a wise choice.  He asks for them occasionally and I have to say no.

He is midway through his second course of steroids, first one was 2 weeks ago.  Only moderate improvement after the first course of steroids, hoping for a bit more dramatic improvement this course, but of course only time will tell.

His neurologist put in a non-formulary request to start my husband on Tecfidera a new oral med for MS, he said that usually takes about a week, so sometime in the next week he should receive his initial supply and we get to try another MS drug.  Hoping for the best here.

In the meantime I continue to work 3-4 evenings a week for 5 hours at a time.  For the first 2 weeks following this attack I had arranged for people to sit with him, to make him dinner to make sure he doesn’t fall and get hurt.  But the available people have dwindled and we did a few trials with him staying home alone.  He was fine.  I made him keep his cell nearby and he was on strict orders to reply to any text messages I sent or I would start calling and then I would come home if still no reply.

So still praying that this is not the new normal but also not really hating how easy going and agreeable he has become.

 

 
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Posted by on September 26, 2014 in Cognitive Loss, Daily Living

 

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Falling out of love…

Some of the search results that bring people here are interesting but this one caught my eye today:

“my wife has secondary progressive ms and i have fell out of love with her but i do love her”

 

I personally don’t believe that love is a place you “fall” into or out of.  Love is a choice.  Love is work.  Love is hard.  Love can be very rewarding.  If I did not make the choice to love each day I could easily claim to “fall out of love” with my husband.  I know many people don’t see marriage the same way I do.  Many people walk away when the going gets tough.  Til death do us part has no meaning to the masses.

I was raised different.  Love is not some place that you fall but something that you do.

“Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.”  I Corinthians 13.

 
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Posted by on September 21, 2014 in Purpose

 

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Our NEW Normal…

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

 

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Drug Holiday…

No it has nothing to do with a vacation in Central America or any other type of vacation that involves recreational drug use.  For an MS patient a drug holiday is a time when they are taken off all disease modifying drugs.  For my husband his current drug holiday started in April when he stopped taking Tysabri.  The doctor had a wait and see attitude about it, thinking that it is quite likely that Pete is secondary progressive at this time and the drugs may not really be helping him anymore.

I have been keeping a close eye on him since that time for changes in physical strength and cognition.  Physically he has good and bad days but had not been losing significantly until this past weekend.  The weather has been very hot and humid and he was slowing down noticeably.  I attributed this to the weather, heat does sap his energy and strength and to add to this we drove 3 hours stayed in a hotel and spent all day Saturday at an amusement park riding roller coasters.  He should be tired.

But he has been having another symptom, he seems out of it, slow to speak and respond to questions. Sometimes he doesn’t respond at all, as if in the effort to formulate a response he grew too tired to bother to spit it out.  His quick wit was gone and also his irritability was gone.  I know that might seem like a blessing BUT it is not normal for him to be this mellow.

I emailed his doctor on Sunday afternoon filling him in on the behavior changes and asking what he wanted to do.  He wants us to come in tomorrow to see him.  I am hoping he has something in mind that can help stop whatever is happening, he had mentioned IV steroids as a possibility.  Pete hates those BUT they do help sometimes.

Wish us luck.  I can’t believe I am saying this BUT I am hoping this quiet mellow Pete is not the new normal.

 
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Posted by on September 8, 2014 in Cognitive Loss, Daily Living

 

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