Saw this online one day and decided to order it. Not sure if I have the nerve to wear it though.
Monthly Archives: August 2015
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.
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.
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.
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.
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.