I remember how I used to look forward to the long w/e at Easter: 4 days! Now it is 4 days with Al. 4 LONG days. Trying to find an hour, or sometimes even a half-hour to do something I want to do is getting a lot tougher. By yesterday afternoon I am quite sick of him, tired of watching for him, that he doesn't decide to walk somewhere, that he doesn't prune the shrub in half, that he doesn't take all the dirty dishes out of the dishwasher and put them away - always so helpful. And he is sick of me, telling him what to do, watching his every move. He misses his independence. We both do. Sometimes I can't believe the things he needs help with. Used to be great at vacuuming - helpful and kept him busy. Now he doesn't understand it has to be plugged in. and when I unwrap the cord he is frustrated because it is messy and he just wrapped it up. Sweeping the floor, sure for as long as he can focus on that so perhaps part of it is done but doesn't get that you have to pull out the chairs to get under the table. Sweeps the rugs. And wants to GO all the time. So just finding the time to do the online banking, this blog, look up anything - just 20 minutes honey, 20 minutes and then we will....I can't wait to go back to work. How sad is that?
Someone asked me When is it good with Al? That stopped me. I drew a blank. I can't remember when it was good. How about when he falls asleeps on the couch? Or the occasional time he has not bounded out of bed and i can slip out of bed in the morning and have a 1/2 hour to myself. And of course when I go to work and can wave Have a good day, see you tonight . I can think of some things that have been ok. We had a nice, w/e in Radium sitting in the hot pool. He liked that and as long as he didn't strike up a conversation with the soakers next to us because of course - blank look on their faces. But out for a bit of a hike, riding bikes last summer. But even with our closest friends now I feel the strain, trying to ignore his conversation as they nod and smile and laugh with him, doing their best to include him. In the car is good, particularly long distances as he will just look out the window or nod off. And flying has been fine, the last couple of trips once you get through security. Always a good traveller. So sometimes, when it is just him and me it is ok.
I tie his shoes most of the time now. It is just easier. I know I shouldn't, that the longer he does these small tasks himself, the longer he will be able to do them. But if I dont' them, then when it is time for them to come off, they are in knots, and often wrapped around his ankles. Lots of little things, that it is just easier if I do it myself. Help him get dressed, hide those things he needs in the am like phone, wallet, hearing aids and house key. Then I don't have to look for them. Same with his boots - hiding them so he doesn't keep putting them on. Hiding his glove and his ball caps. Easier to unload the dishwasher myself, but he helps and I can just move things from one cupboard to the other as we go, which he doesn't seem to notice. Still shovels the sidewalk though, and the lawn and I try not to grit my teeth.
Big mistake on Saturday. Went to Canadian Tire on the northside. Won’t do that again. What was I thinking? Next to Can Tire is the A&W and Al says “A&W! My dad is probably in there, I want to see him”. We went through this at Christmas and I thought it had faded away. Nope. “No honey, I’m sorry, your dad is not there, your dad is gone, remember? He passed away a long time ago.” YOU THINK HE IS DEAD. HE ISN’T. MY SISTER TAKES HIM THERE AND THEY HAVE LUNCH. WHY DON’T YOU EVER BELIEVE ME? And so we go through it all again, your folks are both gone. My folks are gone. This is why we have your mom’s paintings and all of your dads tools in the garage… He is MAD. Slams the car door and heads for A&W. I AM GOING TO SEE HIM. I pull the car closer so that I will be there when he comes out, and he does. Defeated. So dejected and sad. The wind taken out of his sails. I call out so he can find me – come on, lets go into can tire and get those containers. And he does. But he is quiet, sad. And I have no way to make it better. We just keep going.
He didn’t know who I am, or where he was. Got up to go to the bathroom at 3:15am and I woke up because he is muttering, I’m cold I’m cold. He is shivering uncontrollably. I help him into bed and try to snuggle him but he pushes me away. I heap another big blanket on top of the feather down. He thinks he is freezing but also can’t stay in bed. Up down, up down. Coughing, coughing, he can’t quit. I get up with him and get on his flannel loungers and a warm tee, socks and slippers. We go downstairs and I make some comomile and turn on the tv hoping he can focus on something. He can’t. He lays down on the couch, gets up, down, up. He is muttering to himself. I call Health link and discuss it with the nurse. Color is a bit grey, yes face even, speech impeded (compared to what?). Breathing – doesn’t seem to be an issue. Unsteady - no issue. He doesn’t even seem to be aware that I am on the phone or talking about him. He is in his own world. WHY. He was fine (in the scheme of things) when we went to bed. As we talk, he seems to settle a bit. She suggests we don’t need an ambulance but thinks I should take him to the ER within 4 hours. What a thought! He finally starts to settle a bit, has stopped shaking, says he is ready for bed. He falls asleep within minutes. It is almost 11am and I keep checking to see if he is breathing. And he is.
I got called at 11 am. Al and his support worker were at the food bank where Al volunteers. Everything was fine until "I can't do this" and down he went. He didn't lose consciousness this time but kind of just got very weak and slid down to his knees. Coudn't get up on his own. This is event #4. Each of the other times we have called the ambulance and gone to emergency only to be told 2 or 3 hours later "he is awesome on paper!" Yes he is. But today I jsut brought him home. He slept for an hour, had a light lunch and relaxed for most of the afternoon, but now is pacing, ready to go out, much recovered and very bored. He does not like to spend the day doing nothing. Quite honestly this is not my first choice in how to spend a vacation day either. I know it isn't his fault but I still resent it. One more thing on the list of RESENTED THINGS.