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Patience

I am not a patient person.  At least I don’t feel like a patient person.  I have always been one for instant gratification, I want it and I want it now?  Why save for it when you can put it on a credit card and pay it off WHILE you enjoy it?  I have, over the years, learned a bit more patience when it comes to financial matters.  I use credit sparingly and even then I plan carefully to use 0% interest specials and be sure to pay off before the expiration date on the offer.  I am patient and kind with my animals. I love them to the moon and back just like you love your children.

But with my husband?  I feel like I am lacking patience.  Because he has the reasoning ability of a 5 year old he is frustrating to talk to.  He struggles to speak at times BUT I hear him on the phone with his sister and he’s chatting away then he refuses to speak to me. I ask questions and they are answered with hand waves, facial expressions and grunts.  I tell him he has to use WORDS and he just clams right up and refuses to answer.  I try to reason with him which is of course futile (have you tried to reason with a 5 year old?) but I look at a full grown man sitting in front of me, my husband, a man that used to be decisive and authoritative and never one to mince words.  I wish I could just see him as he is now but who he used to be so clouds my vision it’s hard to comprehend.  So I argue with him, I threaten him, and through it all he refuses to talk to me, will not fight back and just laughs, and laughs and laughs.

The laughing is part of the dementia (lability or pseudo bulbar affect? take your pick) but it still has the ability to infuriate me. And in those moments I find myself praying for patience.  That is a dangerous thing because truly learning patience comes through some very difficult situations.  But I’m already there and I need the patience to stop the anger.

Love is patient, Love is kind.  I do love him and I want to be patient and kind I really really do.  I pray daily for patience, kindness, gentleness and LOVE.

Part of my efforts to change the dynamic come with hugs, daily hugs. An effort to reconnect and remember that love we used to have.  He resists sometimes and then it’s just a quick hug and I tell him I love him (he never says this anymore) but other days he leans in and we both get a real hug.  It makes me miss him more but it reminds me of the LOVE that brought me here in the first place.

I am still not a patient person, but I am more patient than I used to be and I pray that each day I become more patient than the day before.

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Falling over the edge…

The thing about this disease is that it is all consuming.  For my husband it has taken every part of his life and turned it upside down.  He is no longer the same person he was not even close.  What people don’t seem to realize is that it is doing that to me too.  From strong career woman to washer woman, enforcer, meanie.

He tells me I am mean almost every day. Why?  Because I try to keep him safe.

“Give me my keys!” he says “I’m not asking you I’m telling you!” he says.  I have to say NO and mean it and he hates me for it.

The other day my uncle sent me a photo of my great grandmother.  I showed it to him, he says “you don’t look like her at all” so I tell him that people say I act like her, his reply “so she was a bitch too?”  Yep that hurts.

I feel like I let friends down and that they really do not understand how caregiving has consumed my whole life.  I had promised to loan my camera to a friend for Sunday and was supposed to drop it off Saturday night.  I remembered on Sunday when I was already too far away to do anything about it.  She wanted it for a large event, and so she had no camera and had to rely on others for photos.  I feel bad and sent her an apology text on Sunday when I realized what I had done.  It’s Wednesday there has been no reply.  I’m sure she feels I let her down.  But I’d love for her to spend a day in my shoes and see the things that are consuming my mind daily and realize how easy it would be to let something like that slip and that it doesn’t mean I don’t value her as a friend or that I don’t think her event was important.  I do know it was important, I know she felt let down, and now I feel like I may have lost a friend over something stupid really.  I lost track of time on Saturday as I was dealing with so many things at once, dinner, dogs, friends, getting ready for Sunday’s road trip and just battling my usual depression and lack of motivation.

September 6-7 2014 is when this disease took a huge jump forward.  From the outside my life looks the same to most people but no one seems to understand that it’s not at all the same.  My husband has the judgement of a 4 year old.  Everytime I leave him alone for any length of time it is a gamble.  In 30 minutes he nearly burned our camper down, what could he do with 4-5 hours while I go to work?

I am working on getting support lined up for my overnight trips I have to go on this fall.  Thankfully my sister and her husband are trained caregivers for adults with special needs.  And since I have provided countless hours and days of absolutely FREE babysitting for their children I called in the favors and my brother in law will stay with and manage my husband in my absence.

Still not sure what to do about my apparently pissed off friend.  All I really want to do is go back to bed and sleep for a few more days.

 
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Posted by on August 19, 2015 in Daily Living, Dementia

 

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YES this is my circus…

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YES my life does feel like a circus.  I am on the highwire without a net and the monkeys are running the show below. It might be easier to jump.

 
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Posted by on August 12, 2015 in Daily Living, Dementia

 

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A new low for me…

bitch

Today I found myself in the men’s room.  TWICE.  First time at the VA when my husband pulled the call button for help and a shrill alarm started sounding outside the door as well as flashing lights.  I went in to check on him and we turned off the alarm, but it rang for nearly a minute.  Sadly no one else showed up so those alarm buttons in the bathroom at the VA?  Don’t expect much.

The second time we were at Outback for lunch.  He insisted on walking in rather than me getting out his wheelchair.  We get from the truck to our table (about a 15 minute excruciating process) and then he says he needs to go to the bathroom.  Of course it is in the very far back of the restaurant and so he starts making his way there an inch at a time with his walker.  I know this is not going to work and he is not going to make it.  So I leave him moving at a snails pace toward the bathroom and go out to the truck where I retrieve the bag of extra clothes and his wheelchair that he should have been using.

Soon I find myself in the men’s room at Outback, on my hands and knees in the men’s handicapped stall helping him get his wet jeans, underwear and socks off.  Helping him clean up and get clean underwear, socks and sweatpants on.  While I am on my hands and knees in the bathroom stall someone else comes in.   Once upon a time in another life I may have been a bit of a wild girl for a year or two, but this was definitely a first for me.

Even my husband had to laugh as I said “when you picture me on my knees in the men’s room I bet this was not what you had in mind…”

At least we can still find humor in this messed up life.

 
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Posted by on October 1, 2014 in Daily Living

 

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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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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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