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Category Archives: Daily Living

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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Today…

Today is a day when I am reminded just how much my husband has lost.  Today I had to help him figure out how a hard drive went into a PC.  Today I had to try and diagnose why his laptop will no longer connect to the internet and when I couldn’t figure it out I had to back up his files and re-install the operating system on his laptop.

Why does this make me sad you might wonder?  Well because in 2007 before the exacerbation that started this whole chain of events my husband was a Computer Network Engineer.  He was a master PC Tech.  He could build a computer from scratch and was a pro at diagnosing networking problems.  Before 2007 I would go to him when I couldn’t figure these things out and people paid him a hefty salary to keep the network for an entire hospital running 24/7.  He was good at it, VERY GOOD.

Today he could not remember how the hard drive fit in the case so he could screw it back together.  Thank GOD he remembered how to plug it all in because I really am no good at hardware at all.  Today he could not diagnose a problem with ipconfig (and neither can I which is why I chose to perform a fresh install of the OS and start over).

In 2007 he was one of an elite group of MCSE Certified Networking Professionals.  Today he can’t even set up his own email.

Life is not fair.

 
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Posted by on August 30, 2014 in Cognitive Loss, Daily Living, History

 

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What dementia means to me…

Many moons ago when I was much more naive and innocent I thought the word dementia was reserved for very, very old people, with Alzheimers. I never thought it would affect my life in any way.  I thought dementia had to do with memory loss and aging.  Again I had no clue.

“Dementia is a loss of brain function that occurs with certain diseases. It affects memory, thinking, language, judgment, and behavior.”

Memory – yes my husbands short term memory is shot, he can tell you in great detail things that happened 20 years ago but if you ask him what he ate for lunch today he may not be able to remember.

Thinking – wow is this ever an issue, his thinking is really messed up.  A man who used to be so logical it made my creative mind hurt has no logic left in him at all.  For example he thinks it is perfectly logical to drive 100 miles round trip to save $5 on something that we could buy locally.  It’s cheaper in the city so it makes perfect sense to drive 100 miles with gas at $3.59 a gallon to save $5 to him.   I have more sinister examples but perhaps another day for those.

Language – he can’t think of words, his vocabulary is shrinking, the words he does use are more crude at times, he struggles to spit out his thoughts.

Judgement – let’s just say he has none – tell a dirty joke in front of your sister’s 7 year old daughter?  Sure why not?  Tell same dirty joke to mother-in-law’s church lady friends?  Yep again why not?  Carry on illicit conversations with ex girlfriends on facebook where in you tell blatant lies about yourself and your wife?  Again his judgement tells him that this is a-okay.

Behavior – to me this all goes together with judgement.  If you have no judgement and can’t think clearly or logically than your behavior is bound to be deplorable.  And his is at times.

So how do I cope – well some days not very well.  My husband is 47, I am 44!  Dammit I’m not supposed to be dealing with this for another 40 years at least.  But here we are.  My family treats him as they would anyone with a mental disability or mental illness – to say they don’t call him out for most of his behaviors or words, but also do take anything he says or does seriously.  I have a harder time with it, especially with people who may not know about his disability.  The physical disability is obvious but the mental part is not so obvious and many people may think he is just a jerk when he starts in, or sometimes he is terribly charming and they find him endearing but often he does or says something that ends this.

I used to cut in and try and stop him but that just angers him and then he yells at me calling me horrible names at times and in front of friends, family, strangers, anyone really it is just mortifying.  So mostly I let him go and if these are people I will have to interact with again I be sure to privately fill them in.

Dementia…. it’s not just for great grandparents anymore.

 
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Posted by on August 18, 2014 in Daily Living

 

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