Goin' Road Trippin'

The confusion, the frustration about being confused, and the acceptance of just feeling lost has become Pops reality.

His disposition is still one of love and patience (ok, and a little ornery when he’s tired), but his ability to do every day tasks on his own is no more.  He’s made coffee everyday for at least the last 55 years and now he just can’t remember the steps. He’s like 10 second Tom from 50 First Dates, he’ll ask what day it is, and less than 30 seconds later inquire as to what day it is. I’ve been trying to help him keep track of the days by marking them off on the calendar, but he forgets to look at the calendar. I’m learning that he really doesn’t need to know what day it is, so when he guesses the day, no matter what the day, it’s the day he guesses. There’s no need for him to get bothered and frustrated with guessing the wrong day. Especially since I’ll tell him the actual day and he doesn’t agree with me, and says,  “No it isn’t. Is it? No.  Oh,I don’t know what I’m doing.  I’m confused.” He’ll scratch his head trying to make sense of being wrong and that’s when I’ll say, “Well pops, all you need to remember is how much we love you, other than that, Mitch and I got everything taken care of.”

Getting him out of the house has become a much longer process, by the time he’s loaded up his pockets, he’s forgotten that he already did it and feels like he’s forgetting something.  Thankfully he trusts me enough that when I tell him I got him covered, he’ll let the worry go and finally head out the door.

Now armed with oxygen he’s been going on walks with me, of course searching high and low for change.  A couple days ago, again leaving him treasures to find, he was so happy he just kept saying, “If you don’t look for it, you’ll never find it.” And boy does he look, and look….. so much so, it took us 30 minutes to do a half block, but I wouldn’t have it any other way! Almost home, he see’s something shiny in the middle of the road, he stops, stares at it and says,” just a minute”.  He leaves his walker next to me and heads straight for the shiny spot, until the oxygen hose stops him in his tracks half way to his destination. He walks back and says, “Well that was pretty silly of me, forgot I had this thing on.”  We both giggled about it and he was right back to searching.

I got him a game called Quirkle to try and keep his mind active since he no longer does his word searches.

It’s a game where you match colors and shapes, but being color blind, pops never was very good with colors, so he just matches the shapes. When I first got this game for him March of this year, 2016, it brought to light how difficult things had gotten for him mentally. He struggles to match all the different shapes, but he takes his time and will finally find where each piece goes, except distinguishing between the square and the circle, those two he gets mixed up.  I won’t say anything and a minute later he’ll catch it and say, “Who put that there?”

One of the most interesting things about his dementia are the things he misses visually. It’s as if his eyes and his brain take longer to connect what’s in front of him. The things that are in front of him, he just cannot see it, or maybe it’s just that he’s not comprehending what’s in front of him.

I was washing dishes after his breakfast the other day and he was looking all around, as if he were searching for something and finally he looks at me for the 3rd time in his search and with a look of surprise and happiness he says, “There you are!”  and I smile back and say, “Here I am!”

He still loves to help when he can. Lately he’s been pulling weeds while I’m at work, unfortunately they all aren’t weeds…. but he tries his best, so I go behind him and replant the flowers.

I’m planning to create a few projects for him to work on while I’m gone, things like separating a box of mixed screws and nails (especially since he used to be a carpenter ) I think that’ll make him feel good and give him a sense of purpose.

I just got a book called Creating Moments of Joy by Jolene Brackey, it is a very useful and enlightening.

I highly recommend it for anyone who has someone with dementia or Alzheimer’s in their life. The best part was learning how to live his new reality and how to prevent more confusion . Hence, agreeing with him about whatever day he thinks it is!

The outreach and understanding from others has been nothing short of amazing.  It all started when my dear friend Amy’s parents gave us a monitor to keep an eye on pops.  They had used it while caring for her Grandmother, doing all they could do for her during her last years and knew after she passed that our time of need would be approaching soon.

From the time I started writing this post a couple weeks ago to now, I’m sad to report things have gotten drastically worse. He’s not able to find the bathroom, has no understanding of whether its day or night, and will wake up around 1:15 feeling ready to start his day. We can no longer leave him alone. They call it stepwise progression for those who have vascular dementia.  It happened on the 14th of May, Dad officially lost his way, we morned the changed and accepted the challenge with tears in our eyes and love in our hearts. I was beyond heartbroken to see such a change from one day to the next.

He’s reached a new level of adorable;

Mitch went over to check on him one morning last week and there was Dad, standing in the bathroom brushing his hair……with his toothbrush.

He’s reached a new level of dangerous;

Pops is a smoker, he has smoked since he was around the age of 14. Last week Mitch and I were picking up our kayaks and learning how to tie them down. On the opposite side of the car was pops who was winded from having a smoke, thus needing oxygen to breathe (which has been the norm, smoke, oxygen, smoke, oxygen, etc.) So Mitch got him set up and not even a minute later Dad lit up another cigarette with oxygen around his nose, while in my car! My heart stops and I immediately reach for it, hoping we won’t get blown up.  Of course Pops doesn’t understand and begins resisting my attempts to take it from him.  Thankfully crisis averted.  Then the next morning when Mitch went over to check on dad and what do you know, he’s smoking in his room!  Oh my goodness, he is a loose smoking cannon!   I’ve asked him time and time again, “does smoking bring you joy?” and he would say, “Yes.” He’d given up other vices in his life for the ones he loved through the years, so I told him I wouldn’t try to make him stop smoking. But now, we see it killing him, and it is literally speeding up his demise.

He was just watching a movie last week and when it ended he decided to go out and smoke. Before going he said he was feeling good, so I thought this was a good time to really get a gauge on how much one cigarette does to him physically, so I asked him with 10 feeling great, how good did he feel.  He said, “I would have to say an 8, I feel pretty good.”  After his outing, he came back in trying to catch his breath, drained and tired.  When I asked him how he felt between 1-10 and he said, “oh, I don’t know, around the same, I can’t say, I don’t know, I couldn’t tell you, ugh. I’m just so tired right now, I could sleep. ”  I wrote the numbers on a piece of paper and asked him to point to the number that he felt.  He put his finger between the 5 and the 6, so I asked him, “So you feel like a 5 or a 6?”  He said, gasping for air, “Oh i guess, maybe a 5.” Making a point to him about how bad he now feels, I asked him if he would rather keep smoking and feel like he does and die sooner, or stop smoking and have a good quality of life from now on?” He said, “The last one, I haven’t been smoking as much and I’m ok with that, I’m doing better.” So it’s in his mind about quitting.  Being an ex-smoker myself I haven’t forgotten the kind of “hold” that cigarettes can have on a person, so I wouldn’t make light of how challenging it is to move on without them, but it has become beyond obvious that getting him to stop smoking will drastically improve his remaining quality of life.  We’ve got our wheels turning, he’s already agreed to let us hold onto his lighter from now on.

Five days later…He’s reached a new level of cooperation;

Latest update….We’ve persuaded him to use an e-cig in place of cigarettes. Yes, we know it’s still harmful, it’s still nicotine and not a cure, but it’s a much better alternative!

For the last week we’ve been trying to control the number of cigarettes he’s had, and the more we did, the more he wanted. Just Yesterday, after a morning of diverting and distracting him from thinking of cigarettes, he remembered what he wanted and was digging out butts from a can, at one point having a smoke in each hand! But with that being said, only three smokes all day….YES!!  We’ve had the e-cig from a couple weeks ago when I first tried to get him to switch over and he just wasn’t having it, but today, today it stuck!

It is now 3:10 in the afternoon, he’s used his e-cig three different occasions and not near the amount of one regular cigarette (had he been smoking he’d already be on his 12th cigarette of the day) and he has not once asked for the real thing! So long, putrid nose burning stink, sprinkled butts around our yard, ash and burn holes on pops clothes and the deep gut churning fear of him burning himself or the house down! Hallelujah!