Last week we visited dad on a Wednesday since the VA home was hosting one of their monthly picnics for the veterans. Since dad doesn't usually expect us on a weekday, we didn't see him sitting in the lobby waiting for us. Instead, we found him sitting at his desk, in his room, working on his puzzle books. He had his back turned to us, intently working, that we had to greet him more than once before we could get his attention. He was very happy to see us and quickly wanted to go shoot pool.
Before we left his room, my sister and I noticed there was a nurse sitting at the bedside of his roommate. We didn't think too much of it at first, but then wondered if something might have been wrong. When dad was moved to the dementia unit this past winter, while it was sad to learn that dad would be the youngest in the unit, it was a little amusing to find out that he was being paired up with the oldest resident. I don't think they've ever spoken a word to one another.
Once we left the unit, we decided to start by taking him to the picnic so that he could eat right away and we can spend the rest of our short visit shooting pool. It's sometimes hard to flip the script on dad and introduce a new routine and if we start by shooting pool, he will lose sight of the other things planned for the day, and we definitely didn't want him missing a meal. Unfortunately, due to the weather forecast, the picnic was moved indoors, but the food was still good and they had some entertainment. Dad seems to light up when he sees other veterans or staff that he recognizes from his unit, especially when they are all outside of "lockdown." It's like their world just got a little bit bigger, at least temporarily.
Dad usually has a hard time sitting still, especially when we try to do something new. He was anxious about getting food and then getting over to the member's lounge to shoot some pool. But I went outside with him so he could have a cigarette while we waited for them to finish setting up for lunch and that seemed to help. After that, he was really quite calm and didn't seem so antsy. He ate his lunch and commented about a lot of the songs the band was playing, even tapping his hand on the table to the beat.
After lunch we made our way over to the member's lounge where our brother showed up to shoot pool with dad. Dad still likes to read the signs along the way and I always like to see if we can still make him laugh. When he pointed out the sign in one of the kitchen areas that said, "Please do not store bait in the refrigerator." I asked him, "Where am I supposed to put all the worms that I brought with me?" He laughed and said, "you didn't bring any worms, did you?" I wonder if he thought that just maybe, I had. But he's still pretty sharp with the banter and jokes, so that's good.
After several games of pool with Ricky, dad actually remembered that we needed to leave by 2pm so that Denise could get home in time for the school bus drop off. At about 1:40 he suggested that we start heading back. It seemed like enough time, but we always forget that it takes longer than we think. He's got a routine for everything, and returning to the unit is no different. There's more signs, bathroom stops, one last smoke break and sometimes we look at the birds in the lobby before finally ringing the buzzer to let us back in.
Then once we are in the unit, he takes his "shortcut" back to his room, which is not much shorter than the other way, but we always meet back at his room after signing him back in and returning his smokes. When we returned to the room, it was quite obvious that his roommate was not well. We realized that he was probably moving on soon, as there was a different nurse at his bedside, making him comfortable and taking notes. I think they were watching him around the clock in what was probably his last hours. We got it. Dad probably did not. He went right to his desk to work on more puzzles and was blissfully oblivious that he might be getting a new roommate soon.
Tomorrow we go back for dad's quarterly assessment report from the staff, so we shall see...
Tuesday, August 26, 2014
Thursday, August 7, 2014
Judgment
So this disease has made me more aware of something. Before, a person's appearance - someone lacking hygiene, an overgrown beard and ratty clothes, maybe a homeless person...I'd immediately start to judge. Not voluntarily, but I'd be a little scared and not give their story much thought. Seeing my dad go through this and being on the other side of it now has opened my eyes.
When I used to take him to run errands, I'd see the looks from other people. Judging. The hygiene that wasn't the greatest, the clothing choices that made no sense, the behaviors that were just odd. I'd follow him through a store and have to monitor the food he'd pick up. I'd follow him to the beer cooler and tell him he wasn't allowed to get any. And have him politely respond "no? ok" and put it back. It crushed me every time. I'd follow him up to the gas station counter where he wasn't always so polite in requesting his cigarettes. And then he'd stand there and have them wait while he opened the pack and gave them the garbage to throw out. Even if someone was waiting in line behind him. Odd, and maybe a little off-putting for them. But I knew it was just his routine. He had to do it.
Taking him to check on his PO box, where I knew he had not gotten mail in months, maybe years. But he had to check it. One day they wouldn't give him his key until he paid his bill. I wanted to talk to the manager about paying the bill (and closing the account) and the attitude I got was definitely noticeable. To them, he was a pain. Came in all the time bugging them and he never paid his bills. To them, I was associated with him. And they really didn't want to give me the time of day either.
When things hit rock bottom and my dad was arrested for trying to get cigarettes out of parked cars, we had to deal with the corrections officers at the jail. We called every shift to make sure the new officers on duty knew the situation and understood he was sick. Some of them didn't seem to get it and didn't really care to get it. To them, he was a nuisance. We went in one day to bring him some crossword puzzles and to see if we could see him. They acted like it was such a hassle and in the end refused. They did take the puzzles and said they'd give them to him. Turns out, they did give them to him. On the day he was released, as he was walking out the door. To them he was just another criminal. They had no idea what we were going through. What he was living with. Lucky them, they don't have to get it.
We've been having a rough time selling my dad's house. Not an easy sell when there's a water problem in the basement on top of everything else. I had a water proofer come out this week to give me an estimate. I've never dealt with anyone in a service industry that was so rude in my life. Appalling. And I could sense the judgment he had of the place too...the odors in the air, stale cigarettes that we just can't get rid of. If he only knew the half of the story behind that home, my dad, our family. But he was as rude as can be, shooing the cobwebs and complaining that he should have me walk first in front of him so they hit my face instead of his. Judging that we would not have the money for the repairs. I was emotional about the situation as it was, having to deal with selling my dad's house when he has no idea. No idea all his stuff is gone, his house is on the market and that we continue to drop the price month after month. But people will continue to judge. The appearance of the home and the man that used to live there.
I truly hope that this has taught me a serious lesson. A lesson I will pass onto my kids. You never know a person's story, and you should never judge them on their appearance.
When I used to take him to run errands, I'd see the looks from other people. Judging. The hygiene that wasn't the greatest, the clothing choices that made no sense, the behaviors that were just odd. I'd follow him through a store and have to monitor the food he'd pick up. I'd follow him to the beer cooler and tell him he wasn't allowed to get any. And have him politely respond "no? ok" and put it back. It crushed me every time. I'd follow him up to the gas station counter where he wasn't always so polite in requesting his cigarettes. And then he'd stand there and have them wait while he opened the pack and gave them the garbage to throw out. Even if someone was waiting in line behind him. Odd, and maybe a little off-putting for them. But I knew it was just his routine. He had to do it.
Taking him to check on his PO box, where I knew he had not gotten mail in months, maybe years. But he had to check it. One day they wouldn't give him his key until he paid his bill. I wanted to talk to the manager about paying the bill (and closing the account) and the attitude I got was definitely noticeable. To them, he was a pain. Came in all the time bugging them and he never paid his bills. To them, I was associated with him. And they really didn't want to give me the time of day either.
When things hit rock bottom and my dad was arrested for trying to get cigarettes out of parked cars, we had to deal with the corrections officers at the jail. We called every shift to make sure the new officers on duty knew the situation and understood he was sick. Some of them didn't seem to get it and didn't really care to get it. To them, he was a nuisance. We went in one day to bring him some crossword puzzles and to see if we could see him. They acted like it was such a hassle and in the end refused. They did take the puzzles and said they'd give them to him. Turns out, they did give them to him. On the day he was released, as he was walking out the door. To them he was just another criminal. They had no idea what we were going through. What he was living with. Lucky them, they don't have to get it.
We've been having a rough time selling my dad's house. Not an easy sell when there's a water problem in the basement on top of everything else. I had a water proofer come out this week to give me an estimate. I've never dealt with anyone in a service industry that was so rude in my life. Appalling. And I could sense the judgment he had of the place too...the odors in the air, stale cigarettes that we just can't get rid of. If he only knew the half of the story behind that home, my dad, our family. But he was as rude as can be, shooing the cobwebs and complaining that he should have me walk first in front of him so they hit my face instead of his. Judging that we would not have the money for the repairs. I was emotional about the situation as it was, having to deal with selling my dad's house when he has no idea. No idea all his stuff is gone, his house is on the market and that we continue to drop the price month after month. But people will continue to judge. The appearance of the home and the man that used to live there.
I truly hope that this has taught me a serious lesson. A lesson I will pass onto my kids. You never know a person's story, and you should never judge them on their appearance.
Tuesday, August 5, 2014
8/3/14 Visit
It was the first time that everyone was busy with things going on, so I went to see dad by myself. For many families, one-on-one is usually no big deal, but for us it's always been awkward. What were we to talk about? I haven't had a real dialogue with dad in decades, maybe, ever. So that was part one of my fear, but part two is and always will be what if something changes in his demeanor or behavior that I can't handle on my own? We worry about changes in his brain that we know might be coming soon, but we just don't know when. The day he takes a fall because his legs are too tired. The day where something might set him off or he might be angry. The day where he wants to leave the facility to go "home."
So far, so good. He is still in good spirits and happy to see visitors. Or in this case, visitor. I think...
He gave his usual chuckle and smile when they let me into the dementia unit to see him. I said, "it's just me today!" And, because FTD has stripped him of a filter, the first thing he said was, "I like it better when Brett, Mark, and Rick come so we can shoot pool." I know not to take this personally and joked, "well one person visiting is better than no persons and I can shoot pool with you." He agreed, and then said, "and I can get some cigarettes out of the deal." Sigh...he's happy to see me even if he doesn't always know how to express it.
I wondered how the visit would go but it was the usual routine of taking the same route to the member's lounge to shoot some pool, pointing out things along the way, and talking about the day's agenda, which is usually the same thing each time. Get some coffee, shoot pool, dad gets to smoke, and repeat until it's been a couple hours and it gets close to a meal time. Then we usually stop outside, out front of the building so he can have one more smoke. Sometimes we stop and look at the birds in the lobby before heading back to the unit.
Since it was just the two of us, I played pool the entire time. He still shoots well and I'm still pretty lousy, but I did make a few good shots. Dad's pretty tuned into numbers all the time, so I think he really enjoys calling all the shots, not only for himself but anyone who plays with him. "Eleven ball in the corner pocket?" Most of the time I don't know what I'm doing so I go along with his suggestions. On some of the tricky shots, he'd tell me to bank it off the rail or off another ball, and to my surprise, I actually sank a few that way! But most of the time, according to him, Denise and I "tend to rearrange the balls on the table more than anything else." Guess we need to work on our game! Although once in a while, he'd accidentally hit one of my balls in and I'd give an enthusiastic "THANKS!" and he'd laugh.
At one point when we were heading back to the unit, we talked about upcoming visits. I told him there was a picnic coming up for the veterans on the 20th that we were hoping to take him to. It would be a rare weekday visit, which will be nice. At that point, he checked his phone to see what the current date was and said, "It's the 3rd. It was your mother's birthday yesterday." I was shocked. Sometimes he loses track of dates - you just never know what you'll get with this disease. He doesn't say anything more about it and we move on.
As he was having his last cigarette outside, I told him I'd have to get going soon because I needed to run 13 miles when I got home. "Thirteen miles?!" I explained that I was training for my first marathon. He asked, "how did you get started with all this marathon running? Was it Denise?" In that brief moment, we had an actual conversation about something. It was nice, but it was fleeting, and he soon he was back to reminding me of the routine.
"So when we go back, you'll sign me back in...and turn in the cigarettes...and stop by my room with snacks...and I'll wash my hands and go eat supper?" 3x or so.
Oh, and we stopped to look at the birds, too.
I have to say, visiting dad solo wasn't so bad. We had some nice conversations.
So far, so good. He is still in good spirits and happy to see visitors. Or in this case, visitor. I think...
He gave his usual chuckle and smile when they let me into the dementia unit to see him. I said, "it's just me today!" And, because FTD has stripped him of a filter, the first thing he said was, "I like it better when Brett, Mark, and Rick come so we can shoot pool." I know not to take this personally and joked, "well one person visiting is better than no persons and I can shoot pool with you." He agreed, and then said, "and I can get some cigarettes out of the deal." Sigh...he's happy to see me even if he doesn't always know how to express it.
I wondered how the visit would go but it was the usual routine of taking the same route to the member's lounge to shoot some pool, pointing out things along the way, and talking about the day's agenda, which is usually the same thing each time. Get some coffee, shoot pool, dad gets to smoke, and repeat until it's been a couple hours and it gets close to a meal time. Then we usually stop outside, out front of the building so he can have one more smoke. Sometimes we stop and look at the birds in the lobby before heading back to the unit.
Since it was just the two of us, I played pool the entire time. He still shoots well and I'm still pretty lousy, but I did make a few good shots. Dad's pretty tuned into numbers all the time, so I think he really enjoys calling all the shots, not only for himself but anyone who plays with him. "Eleven ball in the corner pocket?" Most of the time I don't know what I'm doing so I go along with his suggestions. On some of the tricky shots, he'd tell me to bank it off the rail or off another ball, and to my surprise, I actually sank a few that way! But most of the time, according to him, Denise and I "tend to rearrange the balls on the table more than anything else." Guess we need to work on our game! Although once in a while, he'd accidentally hit one of my balls in and I'd give an enthusiastic "THANKS!" and he'd laugh.
At one point when we were heading back to the unit, we talked about upcoming visits. I told him there was a picnic coming up for the veterans on the 20th that we were hoping to take him to. It would be a rare weekday visit, which will be nice. At that point, he checked his phone to see what the current date was and said, "It's the 3rd. It was your mother's birthday yesterday." I was shocked. Sometimes he loses track of dates - you just never know what you'll get with this disease. He doesn't say anything more about it and we move on.
As he was having his last cigarette outside, I told him I'd have to get going soon because I needed to run 13 miles when I got home. "Thirteen miles?!" I explained that I was training for my first marathon. He asked, "how did you get started with all this marathon running? Was it Denise?" In that brief moment, we had an actual conversation about something. It was nice, but it was fleeting, and he soon he was back to reminding me of the routine.
"So when we go back, you'll sign me back in...and turn in the cigarettes...and stop by my room with snacks...and I'll wash my hands and go eat supper?" 3x or so.
Oh, and we stopped to look at the birds, too.
I have to say, visiting dad solo wasn't so bad. We had some nice conversations.
Wednesday, July 30, 2014
7/27/14 Visit
It started off like any other visit. Whoever is available to visit dad will carpool or meet at the VA and enter the main entrance where we sign in and fill out nametags for ourselves. As we walked down the ramp to the reception area, we realized we were walking in on a situation. It took a brief moment to realize it was a deceased body on a gurney, surrounded by what seemed to be family members. They were all quiet while a staffer folded up an American flag and presented it to them. I suppose this sort of thing happens all the time, but it was the first time we witnessed it. I heard my niece quietly ask, "did that person die?" and it all felt so real. This is probably the last place most of these veterans will ever know. This could be us one day. It was comforting that this veteran obviously had family when I'll bet not everyone there does. I was glad we were all there for dad.
After we checked in, dad was in his usual chair in his unit waiting area, jacket on, ready to go. I wonder if he wears that jacket every single day. I wonder if he sits there waiting for us every day as well. He still seems to have a good understanding of weekdays vs weekends, so that's a small comfort. He greeted us with his usual laugh and smile and instantly asked about the usual routine of if we brought him some cigarettes and that he's just dying to play some pool.
Some days he's really good, this particular day as well. It's hard because I'll sometimes wonder why he's there and then he'll get into one of his OCD modes and it soon becomes apparent we made the right decision. It's just a shame he can't get out more but it makes our visits that much more special. He didn't stop and point out as much this time and it's almost funny because we come to expect the same comments each time - stopping to look at photos of the newest residents on the wall, stopping to look at the recently deceased list of residents, complete with his commentary of "I hope I never see myself on there, but then again, I won't be around to see it.", etc. He'll point out some of the posters and art and funny signs too about "hot beer, lousy service" that he gets a kick out of, and when this doesn't happen, we almost miss it! I've even pointed things out to him because I was expecting his commentary. I guess this shows we will never tire of this and will cherish the repetition and his tour guide ways for as long as possible.
Dad still shoots pool very well and jokes about the butt-kicking he'll be unleashing on any of us who try to play. He played several games with my brother-in-law, while my sister and I played with the kids. Then I noticed something that took me back in time. Before the diagnosis, dad went through a phase where he hardly noticed or acknowledged the kids. He seems a little better now but when I watched him walk past my nephew and pat him on the head, it reminded me of dad from a long time ago - his way of letting you know he sees you. It was cute and made him seem normal again.
But it doesn't take long to realize he's there for good reason and no matter how busy we all are, it always ends up being a nice visit and good time. It gets dad out and moving around and helps him interact more. There are a couple weekday visits coming up soon. First, there is a picnic for the veterans that we just missed out on in July, so we are going to take him to the August one. And the following week is his next quarterly assessment. Last quarter we got a pretty good report on him, so we're hoping for the same this time. We will hang on to these while we can.
After we checked in, dad was in his usual chair in his unit waiting area, jacket on, ready to go. I wonder if he wears that jacket every single day. I wonder if he sits there waiting for us every day as well. He still seems to have a good understanding of weekdays vs weekends, so that's a small comfort. He greeted us with his usual laugh and smile and instantly asked about the usual routine of if we brought him some cigarettes and that he's just dying to play some pool.
Some days he's really good, this particular day as well. It's hard because I'll sometimes wonder why he's there and then he'll get into one of his OCD modes and it soon becomes apparent we made the right decision. It's just a shame he can't get out more but it makes our visits that much more special. He didn't stop and point out as much this time and it's almost funny because we come to expect the same comments each time - stopping to look at photos of the newest residents on the wall, stopping to look at the recently deceased list of residents, complete with his commentary of "I hope I never see myself on there, but then again, I won't be around to see it.", etc. He'll point out some of the posters and art and funny signs too about "hot beer, lousy service" that he gets a kick out of, and when this doesn't happen, we almost miss it! I've even pointed things out to him because I was expecting his commentary. I guess this shows we will never tire of this and will cherish the repetition and his tour guide ways for as long as possible.
Dad still shoots pool very well and jokes about the butt-kicking he'll be unleashing on any of us who try to play. He played several games with my brother-in-law, while my sister and I played with the kids. Then I noticed something that took me back in time. Before the diagnosis, dad went through a phase where he hardly noticed or acknowledged the kids. He seems a little better now but when I watched him walk past my nephew and pat him on the head, it reminded me of dad from a long time ago - his way of letting you know he sees you. It was cute and made him seem normal again.
But it doesn't take long to realize he's there for good reason and no matter how busy we all are, it always ends up being a nice visit and good time. It gets dad out and moving around and helps him interact more. There are a couple weekday visits coming up soon. First, there is a picnic for the veterans that we just missed out on in July, so we are going to take him to the August one. And the following week is his next quarterly assessment. Last quarter we got a pretty good report on him, so we're hoping for the same this time. We will hang on to these while we can.
Saturday, July 12, 2014
A reminder of the past
This week we took the kids to play miniature golf for the first time. We took them to a course that we went to with my family all the time when I was a kid. It was eery how nothing had really changed. I remember the same windmills and same humpty dumpty head from when I was a kid. It was kind of bittersweet playing with my kids and watching their excitement, but then remembering how we used to do things like this as a family when my dad was still a normal dad.
But then I have another memory of the place. My dad used to love golf, and we'd sometimes go with him to watch him hit balls on the driving range at this same course. I still remember the sound of his metal golf cleats when he would walk across the pavement to the driving range. I also remember a time when he had a raging adult tantrum and how embarrassing it was. The grass was wet and he wanted to hit the golf balls a couple feet ahead of where you were supposed to. I guess it was a dryer spot. He was told for his own safety, and for the safety of the other players, he could not do that. That's when the screaming meltdown started, between him and the manager. Only the manager remained calm. I remember everyone staring. I remember thinking my dad had a good point, but this sure was embarrassing and why couldn't he just calm down? I remember the anxiety it brought on just like it was yesterday.
I was 10 or 11, which means he was about 39. I will never stop wondering, thinking back about other times similar to this, was this the start of the disease? Was it part of the personality changes, the irrational anger the disease brings on during the early stages, when the frontal lobe of the brain is just beginning to deteriorate? Did he have this in his 30's and 40's? And if he has the genetic mutation that caused this disease, am I doomed to get this in a matter of 5 years? It's something I try to ignore, but the thought...the fear...is always there. Always.
But then I have another memory of the place. My dad used to love golf, and we'd sometimes go with him to watch him hit balls on the driving range at this same course. I still remember the sound of his metal golf cleats when he would walk across the pavement to the driving range. I also remember a time when he had a raging adult tantrum and how embarrassing it was. The grass was wet and he wanted to hit the golf balls a couple feet ahead of where you were supposed to. I guess it was a dryer spot. He was told for his own safety, and for the safety of the other players, he could not do that. That's when the screaming meltdown started, between him and the manager. Only the manager remained calm. I remember everyone staring. I remember thinking my dad had a good point, but this sure was embarrassing and why couldn't he just calm down? I remember the anxiety it brought on just like it was yesterday.
I was 10 or 11, which means he was about 39. I will never stop wondering, thinking back about other times similar to this, was this the start of the disease? Was it part of the personality changes, the irrational anger the disease brings on during the early stages, when the frontal lobe of the brain is just beginning to deteriorate? Did he have this in his 30's and 40's? And if he has the genetic mutation that caused this disease, am I doomed to get this in a matter of 5 years? It's something I try to ignore, but the thought...the fear...is always there. Always.
Monday, June 23, 2014
Father's Day visit
It was our first Father's Day visiting Dad in the VA home, and in some ways, it was probably the easiest planning we've had in the last several years. It used to be difficult deciding if we should host him or take him out somewhere when he'd seem to be antsy and uncomfortable doing either. But that was before we knew his diagnosis.
We all went out to see him, with the plan of having a picnic lunch brought in so we could try and eat outside. He's very much into a routine when we visit, so it would be interesting to see if he'd let us change things up on him. As it was getting pretty close to noon and we didn't want the staff to have Dad already seated for lunch, I decided to give them a quick call to let them know we were close by and should be there in just a few minutes. We're not sure if he really knew if it was Father's Day or not, but the nurse said that he will be so thrilled and that he'd been checking the calendar and the pacing the lobby waiting for us. When we got to his unit to be buzzed in, there was another lady waiting outside as well. She was there to visit her dad and we got to talking with her. Sure enough, there was Dad on the other side of the glass, and since he can't let us in without the aid of a staff member, he cupped his hands to his mouth to shout through the window that he'll go get someone to let us in. It's so bittersweet.
The lady waiting with us asked if that guy worked there. We said, "no, that's our dad." She was shocked and couldn't believe how young he was. He gets that a lot. People often think he's a staff member and not a resident, especially in the lock-down wing where he's easily 20 years younger than most.
We signed Dad out to go shoot pool with him, which is a big part of his routine with us. He always gives a little smile and a laugh when he sees us, and that's something we cherish while we still can. You just never know how long that will last with FTD. Once we leave the wing, it's the usual routine of pointing out artwork and photos on the walls as we walk. He'll tell us step-by-step how we will get to the member's lounge to shoot pool, even though we can all probably get there with our eyes closed now. We let him talk and do his thing. He always thanks us for bringing him things to eat and drink and really enjoys getting to shoot pool.
While the guys played pool, I enjoyed the outdoors with my sister and niece and nephew and we called for lunch to be delivered. We were afraid that Dad would be stuck in his routine and want to get lunch at the dining hall, but it only took a little bit of coaxing to have him sit outside on a beautiful day with us. After we ate, he seemed anxious to check out the museum - another usual stop on his itinerary when we visit. But we wanted to give him our gifts first.
We pulled together a nice gift to compliment his crossword puzzle hobby - a magnifying light, a desk light to work from, some more puzzle books, and his favorite cereal bars that he likes to snack on. We also decided to make him a new Army scrapbook. He had a book that my mom made years ago with all the photos and memorabilia that he'd send home from Vietnam. Over the years, the book started falling apart and many of the photos came loose, so we thought this would be a fitting gift, especially now that he's in the VA home, where there really is a sense of pride and respect for those who served for our country.
I think it came out pretty nice.
We all went out to see him, with the plan of having a picnic lunch brought in so we could try and eat outside. He's very much into a routine when we visit, so it would be interesting to see if he'd let us change things up on him. As it was getting pretty close to noon and we didn't want the staff to have Dad already seated for lunch, I decided to give them a quick call to let them know we were close by and should be there in just a few minutes. We're not sure if he really knew if it was Father's Day or not, but the nurse said that he will be so thrilled and that he'd been checking the calendar and the pacing the lobby waiting for us. When we got to his unit to be buzzed in, there was another lady waiting outside as well. She was there to visit her dad and we got to talking with her. Sure enough, there was Dad on the other side of the glass, and since he can't let us in without the aid of a staff member, he cupped his hands to his mouth to shout through the window that he'll go get someone to let us in. It's so bittersweet.
The lady waiting with us asked if that guy worked there. We said, "no, that's our dad." She was shocked and couldn't believe how young he was. He gets that a lot. People often think he's a staff member and not a resident, especially in the lock-down wing where he's easily 20 years younger than most.
We signed Dad out to go shoot pool with him, which is a big part of his routine with us. He always gives a little smile and a laugh when he sees us, and that's something we cherish while we still can. You just never know how long that will last with FTD. Once we leave the wing, it's the usual routine of pointing out artwork and photos on the walls as we walk. He'll tell us step-by-step how we will get to the member's lounge to shoot pool, even though we can all probably get there with our eyes closed now. We let him talk and do his thing. He always thanks us for bringing him things to eat and drink and really enjoys getting to shoot pool.
While the guys played pool, I enjoyed the outdoors with my sister and niece and nephew and we called for lunch to be delivered. We were afraid that Dad would be stuck in his routine and want to get lunch at the dining hall, but it only took a little bit of coaxing to have him sit outside on a beautiful day with us. After we ate, he seemed anxious to check out the museum - another usual stop on his itinerary when we visit. But we wanted to give him our gifts first.
We pulled together a nice gift to compliment his crossword puzzle hobby - a magnifying light, a desk light to work from, some more puzzle books, and his favorite cereal bars that he likes to snack on. We also decided to make him a new Army scrapbook. He had a book that my mom made years ago with all the photos and memorabilia that he'd send home from Vietnam. Over the years, the book started falling apart and many of the photos came loose, so we thought this would be a fitting gift, especially now that he's in the VA home, where there really is a sense of pride and respect for those who served for our country.
I think it came out pretty nice.
We never know what he's thinking or if we'll trigger certain thoughts that might be difficult for him. When we gave him his gifts, he went through them all pretty quickly but he did seem to like the book and took the time to go through it. It's amazing how his short-term memory can be so off while his long-term is completely intact. He pointed to some of the guys, remembering their names like it was just yesterday. Overall, we didn't get a huge reaction out of him, but we weren't expecting that, either, because with FTD, emotions are usually pretty flat. I hope he continues to look through this book and shows other family when they visit. Sunday, June 22, 2014
One small step at a time...
After discovering the state my dad and his house were in
that first weekend, we needed a plan of attack.
Here is the first of many lists I started:
1)
Get electricity back on
2)
Go through bags of mail and business papers and
random notes to get a sense of what might be going on and where everything
stands financially
3)
Set up new bank account and try to limit access
to it
4)
Set up medical appointments through the VA
5)
Schedule appointment with eldercare attorney
My uncle graciously said he would take care of no. 1 first
thing Monday morning. He also said once
we had a doctor’s appointment set up, he would be happy to take him to the
appointment.
So I started with 2. I wish I had taken a picture of all the bags to show how bad it was. But here's a sampling...
Yes, I even used empty beer cases to tote the papers home...
The next step was to get him in for a diagnosis. I honestly just thought it was depression,
maybe mixed with alcohol. I just figured
he didn’t care anymore, and maybe he snapped somewhere along the way and had
some sort of mental break. I also
believed the doctors would never be able to figure it out. Especially at the VA, which was the only
place he could afford to go. I expected
to get a clean bill of health that would leave us scratching our heads. I honestly didn’t know where to begin. I started with his primary care physician who
speedily squeezed us in for 10/23…when I had called on 8/29. Sorry, not good enough. I called a VA social worker and left a 5
minute message on her voicemail, trying to explain a lifetime into a single
message. She called me back and got us
in 9/3 to meet with her. I also left a
similar bumbling message for one of the neuropsychologists and scored an
appointment for 9/16. My uncle planned
to take my dad to the 9/3 visit with the social worker. I had no idea how to explain the behavior we
were seeing. How to portray the severity
of the difference between the way my dad is now compared to how he used to be. At an appointment that took place in front of
my dad. So I wrote up a 1 page summary
for my uncle to take with him and hoped that maybe he could show the therapist
in private. Now we just had to figure out how
we were going to get my dad to agree to go, and not let the woman taking
advantage of him find out about it, so she couldn’t talk him out of it.
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