A diary-style account of Dad's Alzheimer's disease and how we (Kristen and Megan) deal with the challenges of this disease. Dad is hilarious, heart-wrenching, and naked one too many times, and although the disease is confusing and frustrating, we are able to find that humor and love still prevail.
Saturday, October 9, 2010
Whatever works...
It's been a great week for Dad. Something I said last week led him to believe that he owns the place he lives in and that everyone works for him. He then continued to concoct a story that he inherited the entire place from his Dad and that it's his job to take care of it. THIS HAS MADE HIM VERY HAPPY and much less anxious -- whatever works!!! I didn't get one call from Whittier this week and the timing is great since Mom, Megan and I are leaving for five days to New York.
My Aunt Lisa came to visit Dad today with us and there was a big Oktoberfest celebration with authentic German dancing and Root Beer. He was in great spirits and started dancing so ridiculously during The Chicken Dance. We had all formed a circle when he broke free and started letting loose in the middle of the circle all while wearing this big floppy hat... I could NOT stop laughing.
The video below shows some of his great moves... too bad it cuts off right as he was about to enter the circle....
Thursday, October 7, 2010
Goodbye Friend and Neighbor
Yesterday morning Ruth Sciumbato, our good friend and Neighbor for 20 years in Fallbrook, passed away from Alzheimer's. Her husband Pete became her sole caregiver although he did have some help from nurses, family, and visits from my Mom. Pete said he 'did the best he could' and honestly he did better than that. We all know the toll that this disease can take on caregivers.
I will always remember seeing Ruth wave at us from her kitchen window while we played in our backyard. And during this time of year she would start making her zucchini bread and persimmon cookies. Let's not forget how much Megan loved the chocolate mints that were always offered when we came over to visit. It was like having a second set of grandparents right next door! Ruth was such a bright presence with a warm smile and could always make us giggle.
Most of all, Pete and Ruth were a wonderful example of a Happily Married Couple - Married for 61 years!!!! Their love for each other was apparent in everything they did including an emphasis on family - 1 Son, 1 Daughter, 4 Granddaughters, and 1 Great Grandson. Pete and Ruth's family is relatively close by, so I'm sure that Pete will eventually be okay as he stumbles into this new part of life. He's also got a great neighbor who doesn't mind sharing a slice of pie and coffee with him. ;) (my mom)
We couldn't have asked for a better neighbor and friend for 20 years. Goodnight Ruth. You are free from Alzheimer's and although you will be missed, we all now have one more Angel watching over us.
I will always remember seeing Ruth wave at us from her kitchen window while we played in our backyard. And during this time of year she would start making her zucchini bread and persimmon cookies. Let's not forget how much Megan loved the chocolate mints that were always offered when we came over to visit. It was like having a second set of grandparents right next door! Ruth was such a bright presence with a warm smile and could always make us giggle.
Most of all, Pete and Ruth were a wonderful example of a Happily Married Couple - Married for 61 years!!!! Their love for each other was apparent in everything they did including an emphasis on family - 1 Son, 1 Daughter, 4 Granddaughters, and 1 Great Grandson. Pete and Ruth's family is relatively close by, so I'm sure that Pete will eventually be okay as he stumbles into this new part of life. He's also got a great neighbor who doesn't mind sharing a slice of pie and coffee with him. ;) (my mom)
We couldn't have asked for a better neighbor and friend for 20 years. Goodnight Ruth. You are free from Alzheimer's and although you will be missed, we all now have one more Angel watching over us.
Monday, October 4, 2010
Thank You!
I just got a personal phone call from the Alzheimer's Association branch in Irvine and the first thing out of his mouth was, "Wow!" (We're currently at $1405.00.) He thanked us for doing such a great job fund-raising for the Memory Walk and encouraged us to keep it up. In turn then, I need to thank all of you for your donations and support. We obviously couldn't do it without any of you. If you still want to donate you can click on the link to the right on the blog entitled Memory Walk - Join our Team. (you don't have to join the team to donate)
Another person I need to thank is Wendy from the VA in Austin. I am still dealing with all these hospital bills from when Dad had stitches after running away in April. The total amount comes to around almost $10,000 including the Ambulance Ride. Since Dad only has Medicare Part A and goes to VA for everything else, he qualifies for assistance from the VA to help cover the cost of those bills. I spent hours sending bills and information to the VA only to be written a letter saying that we were rejected because we were missing papers. Wendy was my savior last week. She told me what forms she needed and when the hospital billing office played dumb, she PERSONALLY called them and requested all the correct paperwork. As slow as the VA usually is with everything they do, Wendy made progress happen within in 30 minutes. I could not believe it. That was just the first step in getting these bills taken care of, but at least it's a step in the right direction!
If you read yesterday's blog, you know that my Dad had a special visit from his Brother Ron and his wife Linda. They drove down from Oxnard to see Dad and had this to say on my Facebook page... "We r with Ron's brother David and he still has a great sense of humor and is good natured. Glad we r here."
Instantly I was happy and then I felt incredibly guilty and almost wanted to cry. All I've been doing is complaining about how annoying Dad is lately, but that message from Ron and Linda really got to me. Considering Dad has Alzheimer's and is frustrated and confused by his state of mind, where he is living, and the loss of control in his life, he really handles it pretty well most of the time. I need to remind myself that when I have 'Dad overload' to sit back and reassess the situation.
Obviously Ron and Linda only witnessed a few moments of Dad's life yesterday, but they could still see all of Dad's good traits shining through this disease. I know that Megan and I get the worst part because Dad needs to complain to someone and since we see him so often, we get the brunt of the complaints. I need to remember that Dad is struggling as much as Megan and I are with this disease. I'm sure he's scared sometimes too.
Wanted to share this picture of Dad with his brother Ron from yesterday.
Another person I need to thank is Wendy from the VA in Austin. I am still dealing with all these hospital bills from when Dad had stitches after running away in April. The total amount comes to around almost $10,000 including the Ambulance Ride. Since Dad only has Medicare Part A and goes to VA for everything else, he qualifies for assistance from the VA to help cover the cost of those bills. I spent hours sending bills and information to the VA only to be written a letter saying that we were rejected because we were missing papers. Wendy was my savior last week. She told me what forms she needed and when the hospital billing office played dumb, she PERSONALLY called them and requested all the correct paperwork. As slow as the VA usually is with everything they do, Wendy made progress happen within in 30 minutes. I could not believe it. That was just the first step in getting these bills taken care of, but at least it's a step in the right direction!
If you read yesterday's blog, you know that my Dad had a special visit from his Brother Ron and his wife Linda. They drove down from Oxnard to see Dad and had this to say on my Facebook page... "We r with Ron's brother David and he still has a great sense of humor and is good natured. Glad we r here."
Instantly I was happy and then I felt incredibly guilty and almost wanted to cry. All I've been doing is complaining about how annoying Dad is lately, but that message from Ron and Linda really got to me. Considering Dad has Alzheimer's and is frustrated and confused by his state of mind, where he is living, and the loss of control in his life, he really handles it pretty well most of the time. I need to remind myself that when I have 'Dad overload' to sit back and reassess the situation.
Obviously Ron and Linda only witnessed a few moments of Dad's life yesterday, but they could still see all of Dad's good traits shining through this disease. I know that Megan and I get the worst part because Dad needs to complain to someone and since we see him so often, we get the brunt of the complaints. I need to remember that Dad is struggling as much as Megan and I are with this disease. I'm sure he's scared sometimes too.
Wanted to share this picture of Dad with his brother Ron from yesterday.
Sunday, October 3, 2010
A Revelation
When I look at my phone messages from the last week, Whittier Place called me Monday, Tuesday, Thursday, Friday, Saturday, and Sunday. And we visited him on Wednesday (and today). No days off from Dad this week. He's been quite frustrating and I'm sad to say that I am losing my patience. It's difficult to explain how annoying the phone calls are and how we are finding that we don't know what to say to him anymore. (He wants to leave, he's locked in, he has no money, etc.) Blake went with me today to see Dad and afterward made the comment that reading the blog or hearing about our visits is nothing like the real thing... I guess it just seems like a story when I tell it, but it's real life and we deal with it every day.
Both Megan and Blake made the comment that Dad's short term memory seems to be getting even worse. We would spend ten minutes calming him down and then LITERALLY one minute later or less, he would forget anything that we said to calm him down and we'd be back at square one. That's probably the worst part of the phone calls because they only call when he's upset and it's our job to calm him down.
We got a nice surprise today though. Dad's half brother Ron and his wife Linda who live in Oxnard and are making the trip down to see Dad. Unfortunately, I didn't get to see them, but I spent some time making sure Dad knew who was coming. Once he understood who they were, then I would tell him that they were coming today. He would get incredibly excited and shocked and then completely forget. This process was repeated at least 4 times in ten minutes. It kind of made us laugh after the fourth time of telling him because he would act so surprised and shocked every time. (The last time we told him, he actually jumped up and down like a 4 year-old.)
The strangest thing about our visit today was that Dad knew something was wrong with him. He asked me "Is my brain going?" and said, "I could walk down the street with you and I wouldn't remember." (That one gave me chills.) He even said, "Maybe I bumped my head because something is wrong in there." I wonder if a lot of Alzheimer's patients have revelations like that.
He was completely frustrated about the fact that something was wrong with him and it was surreal sitting there with him and listening to him talk about it. Blake was really cute because he told Dad, "You're being too hard on yourself" and Dad looked at him like he was the smartest man in the world. He felt a little better after that and really liked that Blake was there. It's good for him to have another guy around.
We also talked a lot about Dad's daughter Kelly and that's when we took the picture that I posted in the blog. Overall Dad was in good spirits during our visit, but the phone calls that I get are so bad that I always think our visits are going to be the same way. That's usually not the case though. He was still flirting with the staff members... kissed one lady on the cheek, tickled another one on her shoulder, kissed the hand of the lady serving him lunch, asked one lady if she had a sister for him. He had everyone laughing as usual. Why can't you be in that mood all the time Dad? I think that's why the staff can tolerate his lows because his highs are so sweet and funny.
Both Megan and Blake made the comment that Dad's short term memory seems to be getting even worse. We would spend ten minutes calming him down and then LITERALLY one minute later or less, he would forget anything that we said to calm him down and we'd be back at square one. That's probably the worst part of the phone calls because they only call when he's upset and it's our job to calm him down.
We got a nice surprise today though. Dad's half brother Ron and his wife Linda who live in Oxnard and are making the trip down to see Dad. Unfortunately, I didn't get to see them, but I spent some time making sure Dad knew who was coming. Once he understood who they were, then I would tell him that they were coming today. He would get incredibly excited and shocked and then completely forget. This process was repeated at least 4 times in ten minutes. It kind of made us laugh after the fourth time of telling him because he would act so surprised and shocked every time. (The last time we told him, he actually jumped up and down like a 4 year-old.)
The strangest thing about our visit today was that Dad knew something was wrong with him. He asked me "Is my brain going?" and said, "I could walk down the street with you and I wouldn't remember." (That one gave me chills.) He even said, "Maybe I bumped my head because something is wrong in there." I wonder if a lot of Alzheimer's patients have revelations like that.
He was completely frustrated about the fact that something was wrong with him and it was surreal sitting there with him and listening to him talk about it. Blake was really cute because he told Dad, "You're being too hard on yourself" and Dad looked at him like he was the smartest man in the world. He felt a little better after that and really liked that Blake was there. It's good for him to have another guy around.
We also talked a lot about Dad's daughter Kelly and that's when we took the picture that I posted in the blog. Overall Dad was in good spirits during our visit, but the phone calls that I get are so bad that I always think our visits are going to be the same way. That's usually not the case though. He was still flirting with the staff members... kissed one lady on the cheek, tickled another one on her shoulder, kissed the hand of the lady serving him lunch, asked one lady if she had a sister for him. He had everyone laughing as usual. Why can't you be in that mood all the time Dad? I think that's why the staff can tolerate his lows because his highs are so sweet and funny.
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