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Category Archives: Cognitive Loss

Respite Care…

For my sanity I need to use the respite care that is available to me for my husband.  What all does this entail?  Well because he is part of the Spinal Cord Injury and Illness Center at the VA he is entitled to spend up to 30 days a year there in respite care.  This means I can drop him off and the nursing staff will take care of his meds, and his physical needs.  He will be fed three meals a day in the dining room.  A recreation therapist will work with him and other veterans during the days to prevent total boredom.  He will get time in physical and occupational therapy.  Any appts he needs can be taken care of while he’s there too.  And I get a break, my house all to myself.

They encourage me to use this service and until now I have not done this.  I should have.  He has been part of this clinic for almost a year now and I could have had a month off?  Why didn’t I do this?  I will be using this going forward. I plan to schedule one week each quarter to just unwind.  I hope to take at least one great beachy or tropical vacation with a friend or my sister during one of these visits.

I think I was afraid that his family would object, but after our camping trip last week and they saw just how bad he has become they have no complaints at all and understand why I need a break.

So I’m planning – will get him a MiFi so he can use his laptop as the VA in Syracuse has no open WiFi for patients.  Will send him with a stash of his favorite snacks.  Will send some DVD’s he can watch on his laptop as the cable there is not full of choices.  Hoping that the first one goes well so I can enjoy these breaks 4 times a year without guilt.

 
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Posted by on September 15, 2015 in Caregiving, Cognitive Loss, Daily Living, Dementia

 

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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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Some light reading this Saturday Morning…

I have always thought that what is happening to my husband is rare, that most people with MS do not have this type of cognitive impairment.  The other people I know with MS have a greater level of physical disability but mentally still seem quite sharp.  So I typed this line into a search engine “dementia secondary to MS” and I come up with a great deal of fun (NOT) stuff to read.

This article is very much a research/academic and in places a bit over my head BUT the following things caught my attention:

Cognitive impairment substantially impacts the lives of patients with MS and their families. Half to three-quarters of people with MS are unemployed within 10 years of diagnosis. Cognitive impairment is the leading predictor of occupational disability, while physical disability, age, sex, and education contribute less than 15 percent to the likelihood of being employed.5 Patients with impaired cognition participate in social activities less frequently. Cognitive impairment due to MS may also place significant additional strain on the patient’s caregiver, who must help the patient combat intellectual, social, and occupational disabilities.

But it then goes on to say:

Overt dementia in MS is rare. Most cases of cognitive impairment in MS are relatively less severe than those observed in classically dementing neurological disorders, such as Alzheimer’s disease, in which the patient loses memory of previous experiences and is unable to respond properly to environmental stimuli. However, cognitive impairment in MS can be extremely debilitating, with substantial negative impacts on daily living.

So okay in the truest sense he does not forget who he is, who I am, where we live, etc.  But he does forget to eat. He forgets to shower.  He never knows what day it is.  He makes decisions like a toddler, impulsive and often dangerous. His doctors do call it dementia secondary to MS but maybe that is not a true description of his ailment.

Interesting reading anyway, and it seems that it affects far more MS patients that I originally thought.

Want to read the whole article?  You can find it here –> Cognitive Impairment in Multiple Sclerosis
A Forgotten Disability Remembered

While these authors thought dementia was the wrong word for MS the very next article I read had the exact opposite opinion.  I guess such is the nature of academia and research studies.  This doctor from Europe has this to say:

“I therefor propose rebranding MS as a progressive dementia, which in reality it is. People with MS don’t know it, but they have a dementing illness. The good news is that unlike Alzheimer’s and other dementias we have treatments for MS that could prevent, slow down, or stop the dementia. That is something we need to focus on. My colleagues in the fields of Alzheimer’s and Parkinson’s disease are envious of the progress we have made in MS. Are you surprised?”

“The following is a standard definition of dementia and I challenge anybody to prove  to me that MS as a progressive disease doesn’t fulfill this definition.”

Definition of dementia:Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness

“I think people, including the EMA, may view early effective treatment strategies very differently if they viewed MS as a progressive dementia. Why do you think 50% of MSers are unemployed within 10 years of disease onset? Why do you think 50% of MSers are unemployed at an EDSS of 3.5; a level of disability that is not associated with physically disability? Why do 50% of CISers have cognitive impairment at presentation? Why do CISers, RRMSers, SPMSers and PPMSers have the same rate of brain atrophy? The answer is simple; MS is a dementing illness and it is time to do something about it.”

“We need to reposition the early effective treatment strategy as a preventative treatment; i.e. to prevent permanent cognitive impairment and progressive MS. Scientists in the Alzheimer’s field know that it is too late to treat Alzheimer’s disease once you become symptomatic; you need to treat Alzheimer’s in the presymptomatic phase of  the disease, before your cognitive functioning is impaired to such an extent that it impacts on your quality of life and activities of daily living. Why should our strategy in MS be any different?”

Far too late for my husband BUT yes – why was it he had to try every single ineffective treatment before they finally got him one that seemed to work?  Because insurance won’t pay to jump right to the more expensive treatments.  Also for him the one that worked was not yet available to prescribe when he was first diagnosed.  But if it had been and he was started on Tysabri right away?  Well things might be very different now.

Want to read the entire blog post above?  You can find it here –> Rebranding MS as Dementia

I’m going to keep reading if this topic interests you try a google search of your own and you will find much to read.

 
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Posted by on August 15, 2015 in Cognitive Loss, Dementia

 

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Up in Flames

So here is another example of how dementia can quickly take reality and send it up in smoke.

We were camping last weekend and my husband says he’s going to bed.  I am 4 sites away at a campfire with my parents and some friends and he heads back to our camper.  About 20 minutes later one of our friends says “what is that noise”  it’s faint and no one can figure it out so we ignore it.

Suddenly it gets louder and we all realize IT’S A SMOKE DETECTOR!!!!

It is coming from the direction of my camper and I just know it’s Pete so I get up and run. As I round the corner I see smoke pouring out the door of my camper and I yell back IT’S MY RIG!!!!!  They all come running behind me.

I run in to find my husband attempting to disable the smoke detector while standing in clouds of smoke.  On the stove is a package of Jiffy Pop with flames shooting out of it and the fire on underneath it.

He hadn’t even taken the cardboard off, was not shaking the pan and had no idea how to make it AND thanks to dementia his first instinct is to disable noisy annoying thing and NOT turn off stove and put out flames.

The reason the sound got louder is he had opened the door to let some smoke out.  Thank GOD for that at least because just a few minutes more and the camper itself would have been on fire and he could have been killed or seriously injured.

Happy for good friends who each took a dog on a leash.  My dad who made my husband come out in the fresh air (he wanted to just stay in the camper in clouds of smoke).  We spent about 45 minutes outside while the vent fans and open windows and a few box fans blew smoke out of the unit.

Narrowly avoided a huge tragedy.  And now I am contemplating how safe it is to ever leave him alone again?  But 24/7 care is not an option in our world right now and he would resist anyway.

 

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

 

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Just another day in paradise…

So today I wake up early, I have 3 hours to myself before I go to church at 11 and my husband is fast asleep.  Yet I wake up to nightmare number one – a sick dog has left me a present by the back door ON MY BRAND NEW CARPET (was installed Wednesday so yes THAT new).  UGH so first challenge of the morning to clean up dog poo off my new carpet.  UGH

I survive that, dogs are fed and outside in their run for the day.  Carpet has been steam cleaned and is looking no worse for the wear.  It is Sunday and I still have two hours before church at 11.  I get dressed and decide to do my nails, painting my toes and applying my new Jamberry wraps to my fingernails.  Looking good.  About 20 minutes to 11 and I’m ready to leave for church (5 miles away) and may even get there early for a change.

Last thing I do before I leave is be sure I have all vehicle keys.  NOPE, truck keys are missing.  I search for them, the counter, my purse, the pants I wore yesterday when I last had the keys.  Not there.  I wake my husband up, does he know where the keys are?  He feigns innocence but by this time I’m pretty sure he has them somewhere.  He is NOT allowed to drive and yet he wants to badly.  I will NOT leave the house without both sets of keys in my possession because the last time I assumed I misplaced them he had them and went for a joyride.

I keep searching.  His pants, his dresser drawers.  Finally I find them in the drawer that I have NEVER and would NEVER put keys in.  Of course he was hiding them.  He still says he did not do it but of course he did.

By the time I find the keys it is 11:10 and I have missed church.  I sit on my couch instead and pray for patience and kindness and gentleness and love.  I pray for these things to overtake the anger and resentment and frustration.  I better keep praying.

 
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Posted by on July 19, 2015 in Cognitive Loss, Daily Living

 

Leading with Love

Sometimes I get frustrated and want to scream at his refusal to do things that are safe and correct. I know that doesn’t work though, I yell, he laughs, I yell more and he refuses with more vigor. So I stopped yelling. I stopped trying to MAKE him do the right thing. I just love him and choose my battles. The truck keys is a battle I cannot give in on. But I can say no with more love and less frustration.

I’m trying.

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

 

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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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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