” So, what day is tomorrow?” It was the third time in 5 minutes the question had been posed to me. I responded appropriately and received the same answer for the third time.
It was nothing I wasn’t used to at this point… repetitive questions… the answer probably forgotten as soon as I breathed it out of my mouth.
This is a day in my life.
My dad has dementia, and not just random every day lose your mind in a painful way dementia, but it’s technically referred to as Lewy Body Alzheimers, a very progressive partner of Alzheimers.
A cruel, vicious disease robbing the person of memory, the ability to do daily basic tasks, and to think past a few minutes along with a host of other issues. The ability to think and reason becomes marred and tasks like writing and reading become almost impossible.
And besides watching someone you love deal with it, you are along for the painful ride, a pathetic co-pilot unable to control the course they are on.
It is… the most helpless feeling….ever.
There is no miraculous medical treatment… he has the current medications on the market but there is no cure, no fix, for a disease that destroys your brain.
So I do what I can do to make him comfortable, keep him safe, fight for him and defend him where necessary.
A healthcare person told me he has the cognitive reasoning and thinking of about an 8 year old. He’s 72. It’s hard listening to him talk, seeking words and trying to put thoughts together… often I have to read between the lines to “hear” what he’s saying.
It’s hard watching him try and use things and struggle with them.
His writing has declined and even though he can read, I don’t know if he could explain to you what he read.
He has the tv on, but I honestly don’t think he can follow along with what’s going on anymore.
I asked him one day if he wanted me to get anything special at the store for him and he said… “whatever you think looks good”… as if he can’t remember what “something good” might be.
I have to make sure he eats his food or I’ll find it tucked in the ‘fridge still covered or abandoned on the counter.
I’ve been taking care of him since my Mom died, almost 2 years next month. In that time he has had a steady decline. I think my Mom did a lot to keep him “balanced” as we refer to it. Although, learning that he didn’t have “just” Alzheimers, but Alzheimers with Lewy Body, it could explain the more rapid progression.
It’s been a double whammy to me. Losing my Mom and in a way, almost losing him too.
How can I express what my heart feels when a grown man is asking me if you’re “sure he lives at his house?” and “how long has he lived there?” and he’s standing there with tears in his eyes as he inquires of you… it’s all I can do to not sob on him.
But I don’t. There just isn’t time for that.
Instead I reassure him, direct him home ( he lives just down the road from me) and tell him he can use whatever he wants in the house… that it’s ok.
He asks about my Mom and how long she’s been gone. Time is an empty circle for him… time merges into a nothingness… I tell him… he expresses shock.
In day for you and I where time seems to fly by….for him it goes on forever…endless.
I’ve become his safe person and his security in a world he struggles to navigate in.
So often I’m left wondering if I’m making the best choices for him…doing the right thing…really there is no instruction manual for something like this. I shoulder it all as best I can and pray to make the best choices.
As this disease progresses I’m in a place of examining options and trying to determine for now and the future what will be best for him.
Of course there are things along the way that make me giggle…I mean really…sometimes you have to laugh.. or go crazy….
When he comes out carting along odd things that seem right to him…. like little ketchup packs… and some of them are already used…
Or he’s wearing three shirts….
Or when he has one on inside out and perfectly buttoned up to the neck..
Or when he calls me describing the place he’s at and I’m like… “Oh, ok, you are at home”
Then there’s his stubborn streak of not wanting to do what he’s told…like shave… or put on a fresh shirt…
I’ve decided caring for someone with this disease requires a healthy dose of compassion and the boldness of a drill sergeant.
It also requires the patience of a saint, remembering he’s not doing things to be difficult, but that he really is powerless to a lot of it.
And some days I’m left feeling so inadequate…..
If you’ve read this far you’ve probably figured out this isn’t my usual health/fitness post. I wrote a blog a while back that sometimes, I’m just gonna write on life, the stuff in life that’s good, and maybe, not so good. Besides all of my health and fitness stuff, I still have a whole lot of life going on.
Maybe you dear reader, are in the same place right now, caring for a loved one with this awful, hideous disease. I know some days are harder than others… more gut wrenching… more painful… and perhaps more painful to us than them… maybe that is good… that we have the pain because they have enough to deal with.
Then we’re given glimmers or times where we can really see “them” again. Because who they are has become more and more overshadowed by “the disease”.
I want to encourage you, what you do, matters. It is hard. There are times no ones knows or understands what you’re dealing with….
Stay strong… remember to take time for yourself. You need time to decompress…especially if it’s been unusually stressful. Have a couple people you can unload your struggles and concerns on. Don’t be afraid to find someone to help you out in the care required….you both need the help.
And no matter what…just take one day at a time…you’ll make it.