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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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