Tag Archives: Dementia

A Bittersweet Christmas

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.

We Have Reached a Temporary Plateau

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.

VA Benefits

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.

Walk For Alzheimer’s

 

10672195_748599968521665_5968502991617183348_nToday 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!

Dad’s Birthday

20140904_133118Today 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.

In Service

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.

The Hopelessness

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!

My Dad’s Mother

tobacco-field.jpgWhen I was in third or fourth grade, I was awakened in the middle of the night to find out that my grandmother, who lived next door to us, had been rushed to the hospital. I never did find out what occurred that night to warrant the trip to the hospital. Over the few days, I was told that Mama (my grandmother) was very sick and had been transferred to Dorothea Dix in Raleigh. At the time, I did not realize what kind of hospital that was. We went several times to visit her, but were never actually allowed in to see her (that I remember). I remember sitting on a bench outside and being scared of some of the patients that were being walked around by nurses. Later, my grandmother was transferred to a nursing home in my hometown of Washington, NC. She never came home again and she was never the same again. Years later I found out that she probably had blocked arteries or hardening of the arteries, which at the time was diagnosed as mental issues. My tiny little grandmother was subjected to electrical shock treatments. I was never able to watch One Flew Over The Cuckoo’s Nest without thinking of what horror she must have endured. She later died of stomach cancer, which I didn’t learn about until much later. I also never found out for sure what role my father had to play in helping to get my grandmother to the hospital and then to Dorothea Dix. I just know that it had a tremendous impact on him. Mental issues and memory problems terrified him. For years he served on the Mental Health Association Board in Beaufort County. He also volunteered for Alzheimer’s studies conducted by Duke University. Therefore the onset of dementia and the recent diagnosis of Alzheimer’s is a particularly cruel trick to play on him. At this point, I’m sure that it bothers me a lot more than it bothers him. That may be a good thing. But I want to use this forum to jot down memories as I remember them now, as a tribute to him. Every time I go to see him, he has slipped just a little further into his own little world. But he’s my dad and I will keep all of the memories that he has helped me make, alive and recorded for his greatgrandson and greatgrandchildren yet to come.