Many of you who following along with my periodic posts here know my wife Kim, and some of you know first hand what she is going through. Those who don't know her, probably figured out that I do this blog because of her, and what she is dealing with.
So many groups, associations, meetings and everything like to deal with us "caregivers" because that is something those groups or organizations can focus on and feel good an=bout without having to get down to the real nitty-gritty. If you've been ready this for any length of time, you know that I almost never participate in those groups - not because I don't need the support, but because it's usually just a "feel sorry for the poor person dealing with taking care of someone going through dementia." I still feel this is the wrong focus, and organizations need to do more for those who actually have the disease. I don't have time for a pity party for me - there is nothing there should be a pity party for! I said my vows, and I meant them. "For better, for worse, sickness and health, never forsake, never abandon..."
So, instead of me rambling more on that today, and want to share a social media post my wife did this morning. These are her words, her feelings, her thoughts. I am not going to correct the grammatical errors (that would not have been there all that long ago) because I want you to see everything. I will break it into a couple of paragraphs, just for ease of reading, but know that it was one long paragraph to start.
I can't tell you how much I love and admire this woman for her bravery, compassion, and wanting to help others while she can even though she is fighting every moment with an opponent she can't beat... at least not yet. We do keep hoping for a miracle or a break through.
In her words:
"One day a stranger moved in, inside me...it took control...that stranger is dementia, no one can evict it, cure it, slow it down. Can't even reason with it. No I didn't give it permission, nor does it pay rent, it just is my constant roommate here inside me..sadly it is in control, I am not anymore, everyday it takes a little more of me and it doesn't give anything fun back..sooooo quietly I wake in the mornings wondering what I will give up this day...today I have talked to myself about accepting incontinence, yep how bout you think about being 55 and your gonna need diapers, humiliating huh, so is needing a cane, not driving, not talking right, only two months ago I only lost a word or two but now I am not always understandable unless IT decides to play games and let me talk normal for a little while only to say HA HA take that!!!!!!!! Then again I can't talk right, I can't form words due to muscles going away, then there's incontinence, choking, not swallowing , coughing till I throw up, falling down for no reason, not rinsing soap out of my hair, not knowing if I take my meds hmmmmmmm not not not not not...
There is no life preserver for dementia... no treatment, no remission, just a slow sad walk with death
"the scary part of all this is I know it's happening, I keep alot of the bad moments to myself, like throwing up, crying, wetting the bed or my pants, the many fluctuations that happen within mins to hours...hmmmm I see my neurologist this week, she hasn't heard my new talking, the extra falls, swallowing problems, short of breath, choking, you see she is one of the very best and all she will say is yes this is part of it, your progressing, nothing to do, I can run a test or three, but like many with no insurance and medicare doesn't kick in till 2 years after you get disability..why bother as it only shows how bad things are gettin......hmmmmmmm so use your cane, eat softer foods, you and Blake start learning a language you both understand, hand signals etc in case you go mute...hmmmm how many of you wanna be me right now, I'm in here and knowing it's all happening, you say if you know then stop things..well it doesn't work that way, like breathing our brains make so much happen we don't think about things like blinking, walking , sitting, hearing...so much that till it messes up you don't even think about it, well my brain makes mistakes all day and night, things I can't control but after I wet my pants or bed, fall for no reason, can't drive cause I don't know which way to go and could kill you, yes you..
"so see after I mess up I know it.... and just like the talking bad started two months ago, it can act up tommorow or when my silent roommate inside me decides ..... I can go MUTE..I will no longer be able to communicate, walk, take care of myself. I am trapped inside alive and can't get out...so I fight to be me, I try to cope with the humiliating things, diapers that are coming, I cope with the losses, the things I don't get to do anymore like driving, being alone, working, so many tiny things that make each of us who we are. So like the saying live like your dying, well each of us are, but I am living inside myself with my killer and I can't win this fight. I don't mean to ramble, I don't ask for sympathy, I just use my words to help myself cope...it's scary and lonly inside here.
"There is no life preserver for dementia... no treatment, no remission, just a slow sad walk with death.....I am not giving up I just am coping, planning how to be sure my family's ok, pretending to have the courage for what's next...I ask each of you reading my ramblings to be kind to others for like me they might just be treading water and you might be their life preserver...."
