Oct 15/12 Thanksgiving was nice. Two dinners out - 1 with friends, 1 with (my) family. All ok till he says we should call his sister and meet up with her and his mom and dad. Really? I can see where he doesn't remember his dad dying. That was 3 years ago. But his mom died in 2003. Way before he was diagnosed. But it makes you wonder. Were there issues then already? So once again, I get out the obit cards, and try to tell him gently - they are gone and he says "I know you believe that". So does he think I am just deliberately keeping him from his family?
And then on Sunday he tells our friend he has been talking to god. An avowed athiest as long as I have known him, but now he's talking to god.
Oct 6/12 Round 3 at emergency last night. Saw ½ of Bourne Legacy then “I need to get out of here”. Almost out of the theatre and down he goes. A few twitches, maybe a loss of consciousness for just a minute. 3 hours at emergency, blood work, EKG, urine test, xray. Yep, looking good on paper. But he was his usual cordial self at the hospital, and right as rain by the time we got home. But I’m beat.
The fact is I don’t think I was really prepared for this. I guess I thought by the time certain things were happening he would be in care. They are happening, and he is still at home. He knows when to go to the bathroom he’s just not any good at cleanup. So after one small catastrophe out on a day trip (some people are truly amazing “don’t worry about it, no problem”) he is now in Depends every day. And every day when he and I both get home at 5pm and he goes upstairs to the bathroom he is SO disappointed. Why does this happen all the time? Not to worry honey – just hit the shower and you will feel better. And he does, without complaint.
One day he is putting his sneakers on and he comes into the kitchen with one shoe and one sandal. T shirts often on backwards. Needs help shaving. I know he is frustrated often, he doesn’t want to be helped all the time. But he accepts it. And he has gotten turned around a couple of times and found himself not quite at home but not sure of where he was. But when I phone him and ask him to read the sign on the corner, he does and in 5 minutes I have him. But again last week, walks from A (where he volunteers) to B probably 10 city blocks no problem. Walks home every day – couple km, no problem. So despite a few problems I still can’t imagine that I would have him in care. That would just be awful for him. He is downstairs now unloading the dishwasher. So a few minutes extra fun for me – where will those cups be now?
I don’t know when I stopped helping him as much. Basically I tell him twice (sometimes 3 times) and then I just go and do it myself. 2 placemats. 2 placemats from that cupboard. Take out 2 placemats and put them on the table. Never mind. And then I do it. And then we are both frustrated. He so wants to help, to be doing something useful. But he isn’t. And that is what wears a person down. Its not doing the task, its doing it twice, or 3 times.
If I just let my attention stray for a minute…he’s watering and it looked like he was barely passing the hose over everything so I told him to give everything a “good drink” – now he is trying to drown everything. There’s no differentiation, no subtlety, no detail. And the things I do, I have to do again and again because he is helping – putting things away right behind even though I am not done with them. Leave the bikes out of the way so I can access the work bench, and then I move the bikes again, and 10 minutes later, again. And I am sick and tired of looking for his phone, his wallet, his glasses, his keys.
Sometimes I think he will just wreck everything. The lawnmower had to be repaired twice last summer. Now, had to get new bolts for the handle and then brace them cause he just reefs on that handle. And he has run over the air filter cover. But if I don’t let him mow the lawn, what is he going to do? He wants to help but how many times can I fix that mower. It’s the time to look for parts, go get parts, fix it. And the whole time he’s drowning plants, closing every door/window when I am trying to cool off the place, leaving tools in the middle of the lawn, behind a bench, in this corner or that.
July 9/11 The look on my face tells him he has picked the wrong thing. Again. He has failed. Again. Hey, I left my glasses in the truck, can you grab them? He returns with my new shoes in hand, sees my face, and knows…WRONG! He phones me at work, “I can’t get the lawn mower going.” Ok, and then I suddenly remember “but don’t’ put any gas in”. Well, too late now he says. CRAP I am sure that when I get home I will find that he has put gas in the oil AGAIN. “Don’t worry about it, we will get it going tomorrow” but he can hear it in my voice and he knows, he has failed. Again. This is what I do, little by little, break him down with small defeats. Until he will give up. Sometimes I don’t’ think it is alz at all. I think he/they just don’t want to be here anymore. I think that is true for Al, and I think it was true for his mom. Her life sucked, and he perceives that his does as well. At least he thinks it did. He hit 50 and was not wealthy, not retired. No he was either working like a dog and dead tired but with money coming in, or not working and that didn’t take long for me to be ticked all the time. No way out, no alternative, just withdraw. And I think that just kept happening, until he was so withdrawn that it is seen as something else.
I have so much to do, but if I do errands without him, he has nothing to do. Just wandering a bit around the house - going for a walk which will be around the block. But if I do things with him, , I can't get my stuff done - banking, housework. And what about the things I want to do? Do I have to give all of that up too?
June 27/11 I see people looking at him now, questions in their eyes. Something is wrong, but they can't put their finger on it. He's too young, so the answer isn't there for them, they can't imagine what it is but they know it isn't the same old Al. Of course, I am constantly amazed at how many people don't know or suspect anything which goes to show you just how much people talk and don't listen. He just keeps smiling, nodding and saying the odd, yep, right, oh yea, and a comment and they think all is ok. Wow, how far from the truth can that be? I'm freaked cause he is really sliding. The change in meds was a disaster. And the whole research thing a complete fuckup, I am so frustrated! Called Dr I and he advised to wait and see if drug test #2 actually becomes a reality. I was ok with that a few weeks ago, but sometimes I think he is changing weekly. What happens when they do the mini-mental next time? I am worried that if he has dropped too much they will not cover the drugs because they think it will be a waste. Then we are truly screwed. I mean it’s not like this is working now, but you have to have something! An old friend asked about him last week. She has not seen him for a long time and knows that something is wrong. I told her and she was shocked and sad. We have talked since and they want to help - says her spouse, who was once a friend of Als a number of years ago wants to get together with him once/week or so - we will see what happens. We grew apart over the years, you know life changes. Everyone has problems - sometimes mine don't seem so bad. But here it is 3am, I can't sleep.
May 7/12 There’s this guy living at my house. I couldn’t tell you exactly when he moved in because this guy looks like my husband, all my friends call him by my husband’s name, and he wears my husband’s clothes. But my husband is gone. This guy laughs like he used to sometimes, and his voice is very similar, but it’s definitely not him. And not only does he sleep in my bed, but I’m responsible for him! And he is a lot of work. I’m so busy taking care of this new guy, I hardly have time to think about the old guy – where is he? What happened to him?
April 25/12 She says when she walks into the room and looks at him she sees her husband, but as soon as he starts talking she realizes again that he is gone. The body keeps functioning but he is not there. She says she is weepy a lot. And it only makes sense. I have seen this a couple of times now. She has lost her husband but hasn’t buried him, doesn’t get to really grieve the way a funeral allows, and neither do friends or family. Everyone just keeps trying to behave as though he is still alive. And physically he is. But it is a tortured existence for both of them as well as for the closest of family and friends. One visit he says he is better and is ready to go home, begs it of her. The next visit says he doesn’t want anyone to see him like this – no one should come at all. When he was first diagnosed they said 10 years but of course the medical community is thinking of those who are diagnosed at 75 or 80 not at 55. No, we get 25 years or more of this. She can only make herself go a couple times a week now. The staff says that when he is without visitors he seems more content, it is the company and love of others that throws everything off kilter – like some tiny thread holding him to the rest of his former world. And she is exhausted, depressed completely worn out after each visit. Grieving the loss all over again, twice every week without end. And then the next day she gets up, goes to work and acts like life is normal.
March 12/12 Its almost a year since I wrote anything? That can’t be right. In my head I’m talking to myself continually. So what has changed since July 2011.
Still have not pursued the CCSVI surgery. I’m just chicken. And I know that I also kind of keep it out there as a last hope thing – when all else fails…..Al & I head to Arizona on Friday and I have him booked for a Venogram (doppler) and a surgical consult. I keep reading all the research I can find and I know that I won’t have anything surgically done in Arizona. First, I’m just chicken. I can live with Al how he is now rather than risk something bad happening – well that’s a joke – something bad is pretty well happening all the time now so who am I kidding? Anyway, it makes me feel better to think I am actually doing something.
Big break for me though. Joined a group in Calgary. All early on-set (55 to 62) Although one couple is way younger with 2 very small children. So my plate is looking less full. The group is fabulous and all sharing my story. It just makes it better knowing others are out there. I keep pretty good contact with a couple of them and we go every month.
Holidays last fall, this winter and next week. Al will get on a plane and just go anytime. He does love to be busy. Of course organizing all that is draining but I am getting better at it, and getting more help. Home Care in the AM so I can get ready without running back and forth – one pair of underwear is enough! Are those yesterday’s socks? A long sleeve t and a heavy shirt are enough….Al needs help to shave and now thatI don’t have to do it by the time we are sitting down for toast I am a lot more relaxed. But he needs to be cued almost continually now. But continues to be easy to get along with as long as I don’t hurry him too much and keep my cool.
May 15/11 I always think I will get on here more often, but here it is - a month. Life is just busy. Al was all lined up for a new test drug in Calgary. New CT scan, new cognitive tests, blood work, urine sample....but the research nurse misread the directions and Al had to be on Aricept for 3 full months, not 2 and so he is out. I know it was an honest mistake but I am still mad and it has been a couple of weeks. The aricept is like taking nothing. I don't think it is near as potent as the Reminyl - or Al is just getting worse. Don't know, I feel like I can't decide ON ANYTHING. I am now wishing I had taken him to Cancun last month for the CCSVI. I really don't think it would hurt. Also, people are starting to look at him now. I can see it in their eyes. Something/someone has tipped them off and they are questioning but don't want to come out and ask. Are they all just pretending he is ok so as to not hurt my feelings? They are not sure, and just don't want to ask. The lawn is a dead giveaway. First spring mow and he no longer sees the overlaps (or lack thereof) so strips of tall grass. But always, always, the same mellow, sweet attitude. I am lucky with that. And he still really likes hockey so that is good. But we are still insuring and registering 3 vehicles and I can only drive one at a time. I feel like my plate is full now.
April 13/11 Crossing the line, I can feel it. Its 10X easier to do it myself than coax/allow/help him to do it. But I know the cost too. Slippin just a little bit more, its just getting a bit harder and the more I "help", the less he does. Even when I step in, I know I shouldn't but I just don't have the time, the patience. And then of course he does something, and I am reminded how very competent he is still. This sucks.