The Dad Update
Posted on October 29, 2015
Let me state right up front that I’m not writing this for sympathy or as a “poor me” pity party. I’m writing it because I feel the need to keep some sort of record of things as they happen. It’s easy to forget the details or confuse them later on, so I want to make sure I remember things that, for some reason, have been important to me during my father’s years dealing with Alzheimer’s. I’ve been comparing lately—in my head—many of the changes I’ve seen since this began.
Dad started to become a walker prior to and just after his diagnosis. I recall my mother asking me to go with him one Christmas Eve night when Dad wanted to take a walk around the old high school and back. It was freezing, I was annoyed, but I went. I didn’t understand his compulsion to get out and do this. He just wanted to and had apparently been doing it for a while. Once he was diagnosed, we didn’t let him go off on his own again. This meant, though, that we had to take him each and every day for a walk, which he would ask us to do multiple times a day until someone took him. The problem became when he didn’t remember that he’d already gone for a walk and wanted another…and another…and another.
Fortunately, dad’s days of walking were numbered as I could trace the distance we’d go and how it would decrease a little at a time. His walks ended almost two years ago because he couldn’t walk a single lap around the small mall nearby without holding on to me the entire time. It started to mess with how I walked, so we cut those out. We still took him on drives, though, which is the other thing he insisted on. And it was during those years that he became very, very thankful.
When I say thankful, I mean taking him out for a 30 minute walk (plus driving time) or 45-60 minute drive and being thanked every 2 minutes from the moment we left the house until we returned. Every time. Every day. It got old. You could ask him to stop, you could explain why you wanted him to stop, and you could even yell at him to stop. He didn’t. The only thing that worked part of the time is telling him you wouldn’t take him out for a walk or drive the next day if he didn’t stop thanking you. Believe me, it wore on your nerves.
Dad drove Mom up the wall at home and he didn’t do it to be malicious. He just didn’t realize he’d asked her 20 times how she was doing. The repetition was honestly the worst of it. The absolute worst. It took 6 years before it started to lessen, and the reason for that is dad began having trouble speaking a year ago. He went from his usual speaking self to talking in a whisper and then not even being understood when he did talk. Whatever he’s saying makes sense to him, but in order for it to make sense to you, you have to ask him to write it down, which he can still kind of do. Wait 30 seconds whilst you look for a pen and paper and he’ll have forgotten what it was he’d been saying.
I’ve noticed in recent months that Dad is spending more and more time in bed. He used to get up at 8, then a little later, a little later yet, and if he gets up at noon these days, that’s early. He most often gets up around 2 and we let him sleep because if we get him up any earlier, he’s completely discombobulated. The trouble is keeping him fed, especially since he’s lost quite a bit of weight.
Feeding dad is a nightmare. He will chew a small mouthful of cereal for several minutes, which means a bowl of it can take upwards of an hour before he’s done. And he can no longer feed himself. If we let him, he’d choke because he no longer knows when to stop putting food in his mouth. His body is also giving him issues swallowing, so he has to be watched constantly when being fed. We give him cereal, high calorie drinks, apple sauce, and lots of soup (solid foods make him choke from his inability to swallow).
Dad doesn’t remember my name anymore or who I am. In his mind, I’m that “nice guy” who visits him every day unless I have a full agenda of things I’m not able to get done during the week, or if I have a trip. It was a bit of a sucker punch at first when I realized he didn’t remember me, but in the grand scheme of things, it’s okay. It doesn’t matter as long as he’s getting what he needs, mainly food, stability, and someone around him besides mom who he recognizes in some small way.
I told my husband two days ago that I think the days of bringing Dad back over to the house with me are done. My father’s interest in doing puzzles is waning, he now sometimes forgets how to bring up another crossword on the computer, and he can’t stand up or walk without assistance. There are also days when he needs a quick shower if we don’t make it to the bathroom in time or he doesn’t realize he needed to go to the bathroom. It happens. It doesn’t even phase me or Mom. It’s a part of the disease. This is the part I thought I’d have the most trouble with and it’s the part I now have the least difficulty with. Weird, huh?
I was helping Dad get dressed the other day and he was having difficulty sitting up on the bed, so I put my hand on his back to stead him. I could feel his spine and shoulder blades and it surprised me a bit. His body is wasting away a little at a time. His mind is being chipped away at a little at a time. There will eventually be nothing left and he will move on. Feeling his bones like that got to me because it wasn’t just something I could see. I was able to touch the loss. It’s tangible. It made it more real. I think that will haunt me for a bit.
If I’m honest, I don’t miss the constant “thank you”s or repetition. I really don’t. It wasn’t him back then and this alternate personality is being silenced. It’s actually a bit of a relief. I miss who my father was and still is somewhere in his mind, just locked away from ever getting out until death one day releases him.
Until then, we continue to preserve his quality of life as much as we can. I love my father. I tell him that because I know some part of him is still listening. And I write about him. To remember what he no longer can.
Kristoffer Gair (who formerly wrote under the pseudonym Kage Alan) is the Detroit-based author of Honor Unbound, A Funny Thing Happened On The Way To My Sexual Orientation, Andy Stevenson Vs. The Lord Of The Loins, Gaylias: Operation Thunderspell, several short stories featured in anthologies (to be combined in a forthcoming book), the recently re-published novella Falling Awake, its sequel, Falling Awake II: Revenant and Falling Awake III: Requiem.
13 Responses to “The Dad Update”
Eddie Lam says:
October 29, 2015 at 7:38 am
It is heartbreaking. It remain me couple years ago when my aunt diagnosed with gallbladder cancer, my uncle had been taking care of her day and night, for family around her, it is a baggage. I am sure she did want that too. But at the end, it was a relief for everyone.
I am sure you are not alone. 🙁 I am so proud of you being so patience. It is not easy to see someone who you love suffering. It is torture. But as you can see, nothing is forever, like he was so thankful and said thank you. It was annoyed, but now, you won’t even hear it anymore. 10 years from now, it will be a memory. Although it is not a good memory, you may be able to smile and so proud of yourself what you did and I am sure you dad did too.
JP Barnaby says:
October 29, 2015 at 9:00 am
We talk about this frequently – so all I want to say about this post is that I love you and I’ll be there whenever you need a weekend break of movies and junk food. <3
October 29, 2015 at 10:29 pm
I greatly appreciate that. We should go to London some time and hang out, watch movies, and try to find pizza.
Martha Swartz says:
October 29, 2015 at 12:12 pm
I always have you & your Family in my thoughts & prayers. This is such a horrible disease that not only the person who has it goes through, but everyone in his life. It takes a lot out of those caring for their loved one. Know that you are doing the Best you can to help your dad through this awful journey & being there to help your Mom is a godsend. Not many can handle the effects of this disease within their family. I am so Proud of you & your Mom for staying by your Dad’s side during this time of need that only continues to grow until he is called to leave this life behind.
I Love You my dear Friend.
October 29, 2015 at 10:30 pm
We’re going to take a looooooooong vacation after this. lol
Love you, too, Martha.
October 29, 2015 at 12:44 pm
As you close your eyes. What was will fill your sadness. A smile will appear out of no where. Reality is hard but the steps forward are defining who you are and will be…. I know its hard….
G. A. Hauser says:
October 29, 2015 at 4:58 pm
it is such a cruel disease and now so common. No one should have to go through it.
October 29, 2015 at 10:34 pm
I have a list…and even I’m not sure I’d want those people to go through it.
Patricia Logan says:
October 29, 2015 at 9:34 pm
I know you’ll hate me saying this but I’m going to say it anyway. I’m proud of you. No one understands the difficulty of taking care of a once vibrant parent who’s going downhill by degrees until you’ve done it. I was lucky with my mom. She became ill and even though she spent the last two years in adult diapers and a hospital bed at home, she never lost her faculties. I could still laugh and cry with her and she was around long enough to see me get a publishing contract. I think I made her proud until the end. I know your father would be proud he raised such an amazing son <3
October 29, 2015 at 10:33 pm
I’ve lost my temper with him more times than I care to admit. And it was easier to do it then because his behavior was simply incomprehensible, especially with no way to predict the damn disease. However, now? I look at him and I see the frailty, I see the look of confusion in his eyes, and I feel his bones sticking through the skin. This is no way to die. This is no way to live. I may never understand it, but at least I now recognize it.
Thank you, Patti. You’ve always been there since I met you. You’ve always been standing next to me (as have so many others) and it’s greatly appreciated. Don’t think for a moment that it isn’t.
Kiernan Kelly says:
October 29, 2015 at 9:55 pm
Sometimes words aren’t enough.
You’re more than just a good son, Kris. You’re a hero. *hugs*
October 29, 2015 at 10:34 pm
Stress does unkind things to people, Kiernan. =) If I’m a hero, then the world is in deeper shit than we can possibly imagine.
October 30, 2015 at 1:29 am
I’m at a loss for words after reading your post. Love you my friend. **HUGS** If you need someone to help save the universe, please call or text. Or if you just want to not be alone, we can go out, see a movie, get junk food, or just go for a drive.