Another Father’s Day! – More Quality of Life not Quantity?
I’m hoping to come up to see dad this week… As I’ve mentioned my dad has dementia and has had many strokes….
Holidays like father’s day are a little hard, wondering how much he is aware of what day it is? I feel bad for my friends that have lost their fathers, and I also envy the friends that can spend the day with their fathers, and I am so glad my boys have a good relationship with their dad…. but I have to say being in the in between time….seeing your dad suffer through, you are happy you still have your father, but you are sad that your father is in so much pain and confusion. And you (and no one else) can’t make it easier.
My father is actually really young, only going to be 76 next week! In my dad’s lifetime he has really done a lot and had a lot of funny stories, though he hasn’t been a huge number of places. My dad did join the reserves in the 60s during one of the wars (or was that a military action)? He was in California for 6 months for that, and I remember hearing about a trip to New Orleans, but other than that the only other trip I ever remember hearing about was my parents honeymoon – and that was the story of my father of my father talking his way out of a ticket in Georgia and inviting the police office up to their farm to go fishing!
While growing up, I remember the short trips when we were younger to places like Louisville (I got dropped off to stay with friends), Kentucky to pick up a dog named Waldo (we brought back Tobacco leaves to show for show and tell) and St Louis to visit cousins. My dad also took day trips a few times to pick up cars and animals.
Most of my dad’s stories though involved highjacks he and friends had been involved in at one time or another, or things that had happened while farming. My dad had an ability to tell a story that everyone loved to hear. He had stories about everything from building a rock dam across the stream that is now by our house and flooding out the road to driving a tractor with wagon and having a semi try to pass him on a curvy road and lose control.
Dad also was always willing to help anyone that showed up at the door. People would show up at all hours of the day and night stuck on the road and dad would grab the tractor and pull them out of the snow or mud. Presents would be dropped off, usually a bottle of alcohol – that my dad rarely drank, but sometimes we would end up with an odd thing like a Datsun once with the clutch ripped out.
Growing up dad would hear about or try something and think, oh I need to try that, and off he would go! With that he built a still once – I’ve heard stories about people lined up and even laying under the spicot! Dad also heard about a man selling off animals and ran off and bought a Fallow deer at one point. Several years later dad tried a Beefalo burger and decided to try to recreate them. He and a friend drove across the state and bought two bison! Each family got one.
My dad lost his mother, my grandmother, in his early teens. She suffered for a while at home from cancer, and I know it affected him a lot. My dad would avoid hospitals, saying people die there. The story he once today, and that’s one he didn’t tell normally was that my grandfather brought in preachers to pray over my grandmother to try to get her better, but nothing worked. Dad also wasn’t a church going person. “If you just believe enough”. All through the eyes of a child, it was hard on him losing my grandmother.
He went on to wreck a motorcycle in his teens and have massive head trauma. My Uncle Tom was working in a nearby field and noticed, rushing him to the hospital. My dad was lucky to have survived and had to go stay with my Aunt Dorothy for a while after to take care of him and recuperate. Yet my dad did still manage to finish school high school.
He then went on to farming, starting with farming others land and working up to buying his own land with my mother after being discharged from the military.
Growing up my dad used every chance he could to play at the same time. He was extremely inventive with farm machinery too…. I’ve always said we were lucky to survive childhood! At two my dad made a go cart for me using a drill that was plugged in for a motor. He would put us on sleds (as toddlers) and pull us behind lawn mowers through the snow, put us in the scoop of the tractor and turn it into a fair ride going up and down while spinning in a circle, and I’ll never forget the nails and things I ran through my foot running around the barn yard. (The barn had a huge supply of food in it, ie. collection of bunnies)
My dad now only answers questions asked of him sometimes, speaking is difficult for him, and it’s hard to tell what he is really aware of. He’s in an assisted living facility, which I’m sure to him is just like a hospital that he so hated. The last time he was in the hospital and fully aware, he removed his own iv and tried to call for a ‘breakout’ ending up in someone else’s room.
So what do you do when you are in the middle ground? The ground where no one understands except those that are there with you in the same journey? And like them, everyone’s journey is different – dementia takes every person at a different rate and if a different way. With some you still see glimpses of the person that they once were, and with others you see nothing. Do they know you? Some like my dad have a body that is fighting them also. My dad now won’t use one side of his body due to strokes. That side of his body is atrophying. Family may say, I want to remember him as he was, but they also would be the first to be upset if you voice an opinion that he might now want to live in the condition he’s in? And what to do with the guilt many have allowing the thoughts to creep in that your parent might be better if they give up? It not politically correct to ever voice those feelings…. and no one understands, those that have lost their parents to some quick illness or accident, especially don’t understand.
How do you explain that what you are really voicing is the fear that your parent is going through torture and your job has become trying to figure out the best way to increase quality of life and not increase quantity of life without them suffering?