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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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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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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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One more thing…

So yesterday at a meeting of Pete’s Adaptive Sports Team they broke the news that funds are tighter than in previous years.  They are not sure that they will be able to fully fund everyone who wants to go and that unlike last year there is not likely to be funds for caregivers.  BUT because Pete now receives Aid and Attendance he is not able to travel alone (not like I would let him go alone anyway but even if I was contemplating that they could not allow it.)

So what does this mean?  It means that if Pete wants to attend the National Winter Sports Clinic for Disabled Veterans in Snowmass, CO in April that we will have to come up with airfare, hotel and meal ticket money for a caregiver.  And likewise if he would like to attend the National Veterans Wheelchair Games in Salt Lake City in June we will again have to come up with airfare and hotel money for a caregiver.

I say “a caregiver” because it does not have to be me.  I am hopeful that his sister may agree to travel with him and take on the challenge in April.  And if she does agree she should not also have to foot the astronomical bill to go and I would never ask that of her.

So finally I’m getting around to my point, I have started a gofundme account to raise travel funds for a caregiver to attend these events with Pete.  It will likely be me because others don’t want the responsibility BUT I am still hopeful it won’t always be me. (a girl can dream)

Please do take a look and donate or share if you’d be so inclined.

http://www.gofundme.com/TravelwithPete

 
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Posted by on August 14, 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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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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