The outbursts and episodes with dad are getting more frequent. He has had two fits this week. It is very hard to listen to mom describe them. Dad acts like a child throwing a temper tantrum, only it has so much more effect on you when it is an adult. We seem to be in some type of limbo, not quite serious enough to commit to more frequent care and yet we need to plan our next step.
I plan to visit with the supervisor of the home health that we currently use to see what the next level of care is. We really need someone with some experience with dementia so that they can offer mom more support and guidance. I would really love to hear how some of the rest of you are coping.
My parents have spent every Christmas with us for about 24 years. I know that because my son was three years old when I moved to Arkansas and that is when they started spending Christmas Eve with us. When we moved back from Arkansas, my son was seven and we lived a couple of hours away from my parents, so they still came to spend Christmas with their grandchild.
About three years ago, dad said that he could not make the drive to our house anymore. He was uncomfortable driving on I95. So, for the last three years, we have driven to mom and dad’s house and picked them up and brought them to our house for Thanksgiving and Christmas. This year, we drove to their house this morning and arrived back here around 2:00. We visited throughout the afternoon. I had planned a meal that would take minimum preparation, but still would be festive enough for Christmas Eve. Right before dinner tonight, when dad got tired and hungry, he decided that he wanted to go home. He says that no one told him that he had to spend the night and he needs to get home. Of course, that is not possible. We are not going to turn around and drive back to Washington tonight.
Tomorrow morning we have plans to go to my son’s house so that we can see what my grandson got from Santa. Mom and dad are looking forward to see their great grandchild. Right now dad is in the back bedroom crying because mom is not looking out for his best interest and is not protecting him. Of course mom is upset because it hurts her feelings when dad has these episodes. And I’m sitting here, so sad that life will never be the same. Hopefully tomorrow morning when dad gets up, he will not remember any of this and we will have a nice day with the family before we take them home tomorrow afternoon.
But, with all of that being said, it just reiterates the fact that dad is steadily getting worse. He needs the comfort of his own environment and his daily habits. So this is probably the last year that they will be able to spend at our house. We will see how the year progresses and where we are next year.
I have not written in a while. I guess that things have been going so well (as well as can be expected) that I don’t want to jinx that. Mom and dad have finally settled down into a routine that seems to suit them for the time being. Dad has had fewer episodes of anger. His memory is definitely getting worse and he recognizes less people, but he seems to accept that. One of my concerns is their lack of exercise. Dad is not interested in the same things in the yard that he used to be. He still talks about yard work, his special grass and his shrubs, but he doesn’t go outside as much as he used to. Out of 16 pecan trees left standing in their yard, he did not pick up a single pecan this season. I took him 3 flats of pansies on Thanksgiving and they are not planted yet. I guess that I will have to plant them when I go back to visit next week. He can not remember how to plant them in pots. For dad’s entire life, he has been associated in some way with plants. He farmed, he landscaped and late in his career, he became an agriculture teacher. His love for farming, gardening and planting has always defined him. It is one of the joys that this horrible disease has taken from him. That is still the hardest part to adapt to…the personality changes that we see each time we visit. Most are subtle changes, but definitely there. We will continue to cherish the parts of dad that we have been used to all of our lives that are still with us, while getting to know the new dad that we meet everytime we visit.
One of the things that we struggle with is the cost of help for mom and dad. Dad is adamant that he will not leave the farm. And for him, we want to do everything that we can to make that happen for as long as we can. Currently, we have a caregiver coming in to help out four days a week. She is only there about 4 hours on those four days, so what she can do is limited. But she cleans and drives them around town. She lets mom vent about her problems and she jokes around with dad. We will soon have to increase the time that someone spends with them. I need someone to cook meals for them and to oversee their medication. I need someone that mom can’t boss around and manipulate. Mom is getting tired and her judgement (not the best in good times) is getting worse.
Last week I checked into a benefit that Mike stumbled across, VA pension benefits. I spoke with a representative and at this time, dad does not qualify. But the purpose of the program is to provide a monthly stipend to allow the elderly to remain in their homes as long as possible. Dad could qualify for about $2000 per month from the VA because he was active duty during the Korean war. He will have to be more incapacitated than he is now, but we will keep it in reserve and try and utilize it when the time comes. http://www.benefits.va.gov/PENSION It is definitely a benefit that I encourage everyone to check into.
Today was the 4th Annual Walk for Alzheimer’s in Fayetteville, NC. I’ll be honest, I am not the best volunteer or supporter, but as you all know this is near and dear to my heart. I signed up to walk a couple of months ago. I put my fundraising goal at $100. Within 24 hours, my brother-in-law, Ned had given $100. How wonderful, but since I had three months left before the walk, I raised my goal to $500. My closest friends were wonderful. I very much appreciate their support and donations. As of last week, I was still $300 away from my goal. Jeff Wright with Southeastern Construction of Rockfish came into the office and gave me a check for $315 to put me over my goal. With a few more donations from some coworkers, I raised over $600 by myself. It is such a little thing, but there are times when you feel so helpless that any little thing that you can do to contribute makes you feel more in control.
The walk was this morning and I met my business partner, Stefanie Baber, at King’s Grant, where it was held. It was cloudy part of the morning, which did help a little because it was so hot!! It was wonderful to see so many people gathered to help raise money and to honor the cause. It was also very emotional. When we had the opening ceremony and they introduced a man that is currently residing in a local nursing home for Alzheimer patients and told his story, it made me cry. I know what his wife and family are going through and I so feel for them. Stefanie was sniveling also. She was there to support me and to walk for her grandmother. Next year we will become even more involved and volunteer to help plan and set up.
There have been so many developments in so many horrible diseases that I can only hope that there will continue to be progress made towards finding a cure or prevention for Alzheimer’s. If you have the opportunity to participate, please take a few minutes and show your support. It helps to be around others that understand!
Today is dad’s birthday. He is 83 years old. Yesterday was his wedding anniversary. Mom and dad have been married 60 years. I went to spend the day with dad yesterday and Kathy went today. We try to spread out our visits, as to keep the confusion to a minimum. I had decided that I would take dad and spend the day with him doing something fun and give mom the day to herself to relax. She is always saying that she needs some time to herself.
So, when I arrived yesterday at 11:00, we visited for a little while and then I took dad with me into Washington to get some lunch. I had made mom some homeade chicken salad for lunch, so I knew that she was settled in for the afternoon. Dad and I went to Down on Main for lunch. Thursday is their shrimp special lunch and dad loves shrimp. We had a nice relaxed meal sitting out front at a little cafe table. After lunch we drove around the block to the Estuarium. It is a wonderful interactive museum preserving the history of the river and the area. Dad loves history and he had a great time looking at the exhibits. There were only a few people in there, so again, he was under no pressure to interact with people. This seems to make him nervous now. I had signed us up to take the River Tour and around 1:15, they asked us to gather for the tour. Gathering with the small group of people confused dad and he turned to me and told me that we had lost mom and we needed to find her before we could leave. I told him that we had left mom at home because she wouldn’t enjoy the river ride. He was okay then and we boarded the pontoon boat.
We spent about 1 1/2 hours cruising down the river, frequently stopping to hear about some of the history or to see different species of cypress trees or other plant life. Our tour guide was very knowledgeable and dad appeared to be having a wonderful time. We discussed some of what we had seen and learned on the way home, but I never know how long an experience will remain with him before it is lost forever.
When we got home, dad told mom that we had gone almost to Greenville and around Chocowinity and then down the river. Mom, being mom, told him that he had already been on the boat before, so it wasn’t anything new. That didn’t deter him, he told her about the great time that he had.
Today Kathy and Jonas went to spend a couple of hours with mom and dad for his birthday. Kathy told me that dad told them about his river tour yesterday and what fun he had. Later this afternoon I called to tell him Happy Birthday officially today. Mom said that he had told everyone about his river tour and what he had learned about the history of the area. I am so happy that I was able to share that with him. And then the bittersweet part of the story. When dad got on the phone so that I could tell him happy birthday, he told me about the wonderful time that he had on the river yesterday. He then proceeded to describe what he had seen and what he had learned. He remembered everything that the guide had told him but he didn’t remember that I had gone with him. I am grateful for the memories that he does have and we will continue to try and help him create new ones, even if they do not stay with him long, I believe that they help his well being and I will always believe that.
Dad was raised on a farm with 3 older sisters and 1 younger sister. All four of his sisters went to Meredith College and became teachers. Everything dad ever wanted to do was anchored to the farm and plants. He was in ROTC in high school and throughout college at NCSU so that it could help pay for his tuition. He majored in Agronomy of course!
When he got out of college, he had to fulfill his obligation to the military and was in service for a couple of years. He was stationed in Georgia at Fort Benning. He attended a local church and met my mom there. Poor man didn’t stand a chance, lol. They dated and when he left Fort Benning, they were married and mom went with him. She was born and bred a city girl in a family with money. She lived in a household with a cook and a maid. And married this poor farm boy from NC, was she in for a surprise! Dad got out of the army and went to work for Cargill as a seed salesman and working on the farm. Within a year of marriage, I came along. My grandparents gave mom and dad an acre beside their house to build their own home. They still live in that house to this day!
Recently dad has told me that he feels ashamed to be honored for his service in the military, because he did not fight in a war. The Korean war was winding down when he was enlisted. I tried to tell him that it was no fault of his that he didn’t go overseas and see any action, but that I was glad that he did not. About a year ago, when my parents were still able to drive to church, the church had a military appreciation day. When they asked for each branch of the service to stand up, dad proudly stood and sang along. Later he told me that he had such mixed feelings about his military claim.
I have his uniforms and helmet from the army. He gave it to my son and I packed it away in my cedar chest. Last Christmas, my son put on the dress jacket and wore it into the living room for dad to see. He was quite pleased and spent about 30 minutes telling us about some of the people that he had met and some of the things that they had done in the army. I cherish the stories that he tells of long ago and he so enjoys the telling of them.
One of the little things that sneaks up on us is dad’s paranoia. He has always been a very giving person and kind to everyone. He began to mention little things that people were saying that bothered him or that were being done behind his back. We immediately knew that this was part of the disease. His largest paranoia has to do with the farm. He has come to believe that people are trying to take the farm away from him. His whole identity seems to be tied into the farm. My mom called one day last week and told me that dad was very upset. He had cried and told her that he needed to see me. He said that I needed to come whenever I could because he needed to talk with me about protecting the farm. At the time, it was late afternoon and he had gone to bed because he was so upset. I told mom that I would come either on the weekend or the first of the week. I also told her not to mention the incident again, as he would most likely forget it for a while.
We made the short trip on Monday and arrived right before lunch. We always take them out to lunch as they don’t have the mobility that they used to and don’t eat out as often. Dad was glad to see us and in a jovial mood! He doesn’t have the same filter that he had before all of this started. Growing up and even in recent years, I never heard dad say anything inappropriate. Never a cuss word. Now, little things slip out. When he is in a really good mood like he was on Monday his jokes are a little more hurtful or sometimes at someone else’s expense, not in the best taste. So, he greeted us with a big smile of his face and talked up a storm. My husband is great with my parents. He has so much patience with my dad and he talks right back to my mom. We went out to eat and it is like taking a little child with us. Dad points out all of the littlest things and takes delight in them. When we got back to their house after lunch, dad immediately asked Don to ride down in the field with him. As I have said before it is a ritual with him. On the way home later, Don said that dad did mention the fact that the farm had to be protected and that people were trying to take it away from him, but he never mentioned it in front of me. So, of course, I did not bring it up. Whether he remembers that he asked for me, I doubt it. I expect to see the paranoia grow, as I have heard that it is one of the prevalent symptoms. It is a hard one to watch. I think that the forgetfulness and the memory loss at this point is much easier to see than the actual personality changes. I know that I am losing the person that I have always known and I would give anything to stop that.
At the doctor’s appointment with my dad, when the horrible word “dementia” was first used, the doctor gave my mom and myself a book that he advised that we read. The book, The 36 Hour Day, is probably a wonderful book, but when I sat down the next day to begin obediently reading, I didn’t get very far. It may be a very realistic rendering of what Alzheimer’s and Dementia is like, but at that time, it was the scariest and most depressing thing that I had ever read. I need to pull it back out and try and read it again, two years down the road now and much more experienced with the disease. The next time that I visited dad, I took the book from mom and wouldn’t let her read it. She is naturally a pessimist and looks for the worst to happen. That book played right into her worse nightmares. She almost fell apart.
The doctor also made dad an appointment with a neurologist in Greenville to rule out any physical abnormalities of the brain as a cause. After a cscan, we met with the doctor and he showed me where dad had experienced lots of little mini strokes, which he considered fairly normal and not a contributing factor. The sad fact is that the definitive diagnosis of Alzheimer’s is still at autopsy. Dad’s primary doctor had told us that there were drugs available to combat dementia and Alzeheimers, but in his opinion, besides being expensive, they would maybe slow down the disease by a couple of months at the most. When the neurologist brought up the drugs, mom and dad both wanted to have dad try them. I can’t blame them, how do you overlook anything that gives you any hope at all. At this point, I think that sometime soon in the future, I will have the doctor wean dad off of the drugs as there is not a lot that they can do now.
So, every six months, we go to the doctor so that he can check a few vitals and ask dad how he is doing. Mom, dad and I crowd into the little examining room and wait for the doctor. He walks in and looks at mom and dad and says, how are things? How’s it going? Invariably at the same time, dad smiles and says, everything is going good and mom shakes her head and says, terrible. That’s always been my parents, mom with her glass half empty and dad with his glass half full. And then the doctor will begin to ask mom to tell him what’s going on. So they sit there and discuss dad like he is not even there. The second time it happened, I asked them to stop talking in front of him like he was not even there. Because he is not completely gone yet. He still understands plenty. He knows why he is there and who we are. The doctor told me not to worry, he wouldn’t remember anyway. I told them that did not matter, if they wanted to talk about him to make a separate appointment and talk to their hearts’ content.
I have finally made my mom understand that despite everything else, we have to allow dad to keep his dignity and respect as long as possible. He has digressed rapidly over the last year, but we need to savor every hour and every day!
I’m sure that my perspective of growing up on a farm and a farmer’s perspective of daily life differ greatly! I remember a great freedom. Running up and down rows of tobacco or corn. Finding quail nests and incubating the eggs. “Helping” my dad in tobacco. A treat was getting up early and riding in the truck with dad as he made the round through the neighborhood to pick up the “hands” that worked on the farm in tobacco. Getting up even earlier and riding on the trailer down to the tobacco barn so that we could take out a barn of tobacco and get it to the pack house before we picked up the help for the day. Dad was in the top of the barn, my brother (a year younger than I was) was in the middle of the barn. I took the sticks of dried tobacco from dad and handed them to mom, who stacked them on the trailer. My little sister was always too little to officially help, so she just stayed out of the way. Our barns were gas so while the tobacco was curing, dad made multiple trips throughout the night to check the barns.
Sundays were for church in the morning and then family activities in the afternoon. We had ponies and one of my favorite activities was to ride on Sunday. We were not very old, so we were not allowed to ride without supervision. In the fall after the last tobacco and corn was in, we had more time. Daddy would take us fishing. There were several ponds on the farm and you could always catch brim or catfish. And occasionally a snapping turtle.
The one job that I absolutely despised was chopping weeds. My granddaddy would take myself and Mike, my brother, and we would each have a hoe. There is nothing longer than a row to be hoed. Get to the end and start another one.
But mostly I remember the freedom of roaming the farm and the woods and exploring without anyone worrying about where I was. Dad showed me where the old railroad had run through the woods. He taught me about different birds. His uniform was a pair of Dickie khakis and a white teeshirt. I can still see him out in the field checking the tobacco or an ear of corn. It was what he was born to do.
Now when I go and visit him, he always asked me (he asks everyone) if I want to ride down in the field with him. We get in his little truck (he is only allowed to drive on the farm now) and drive down the lane, back to the pine tree stand where he points out the trees that he wants to thin out and the ditch where he is planning to put a culvert. We circle through the trees and drive down around the pond, cut back up through the field. Sometimes he stops and asks me if I have seen the pine trees lately and my answer usually depends upon how much time I have. If I gently lie and tell him no, he will happily turn and take me right back to where we just came from. If I tell him that I have been recently, he turns and head back to the house. He’s tied tighter to that farm than Scarlet was to Tara!