Some of the first things we really noticed about my father as he developed dementia was his lapses in judgement. With a farm this resulted in more broken equipment… A wagon accidently pushed into a pond. The oil pan cover on a bulldozer being forgotten. We even found at one point that my father had thrown away the smoke alarms while my mother was out. We narrowed it down to while my mom was out and my dad had made himself something to eat. He had mentioned that the food was so burnt that the dogs wouldn’t even eat it. Apparently he had taken down the smoke alarms and carried them out to dispose of them. It wasn’t until my mother had a slight kitchen mishap weeks later that we noticed the alarms didn’t go off… upon a search, we noticed they were completely missing.
The toughest to correct was the wagon in the pond. Someone had to get into the pond and attach onto the wagon and then the wagon had to be drug out of the pond. It ended up taking a few years to get it out! The bulldozer though may still be needing repairs.
After the last farming season – the season of a lot of needed repairs…. my dad began to have strokes. Something I feel that I need to keep an eye out for in my future. I already know that on blood tests/lab work that odd test that shows the size of the red blood cells gives a result showing mine are a little large… I’m not really sure what that means, but I’m guessing that means I’m at a higher risk of stroke. My dad always had issues with clotting – he clotted easy and honestly with very little foreshadowing I already see my future coming… Add to that the fact that I know I have small veins (They say drink lots of water before lab work, hello, that just means I’m going to be in the bathroom a million times between now and bedtime and probably even have to stop to go on the way home – and the way into the lab)
Looking up items to reduce my risk of stroke, I’ve found:
- Start drinking
- Control Blood Pressure (mines already fine)
- Watch your weight (um that’s not feasible…. I do everything I can and nothing helps)
- Cholesterol (mine’s already fine)
- Exercise (does going up and down stairs count?)
- smoking (never have…)
- eat chocolate (does white chocolate count?)
- sleep (must add this to my calendar)
- limit red meat (we already do, but we need some for iron – though we eat a lot of other things with iron)
- Fiber (that could be good to add)
- drink tea (I need to find one that doesn’t make me jittery)
- drink water (I try)
Looking through my list of ways to reduce my list, I think I’m doing pretty good. We have also worked to reduce our fried foods, reduce our fats, and we mostly eat healthy. That tends to break down a little when my husband finds any snacks, when my mom visits, or when we are up in Illinois.
My father passed away September 23rd, 2017… the guestbook is available at: Robinson’s Funeral Chapel
The memorial service was at Muncie Baptist Church and included stories about my dad. Getting a chance to hear some friends and family tell their stories about my dad’s life was a fitting way for his life to be remembered as far as what I think he would have liked. He wanted to be cremated and spread around his farm, his farm being something he loved. Being away from it the last few years I’m sure was as tough on him than the disease that was robbing his memory.
Stories included tales from his childhood of money making plans with his favorite sidekick and cousin, Don, where they collected all the Pigeon’s from the barns in the area – thinking they could sell them as squab – then the cleaning the barn and shooing pigeons for weeks after when their parents found out.
My father’s time in the army amusing everyone but the officer’s tasked with training them. My father answering questions with darned if I know and earning everyone push ups for laughing… Throwing in comments, like save some for me, from the back of the chow line during the company picnics.
My cousin Larry told about my dad taking him hunting for his first time, a friend telling about meeting my dad and sending him down to Kentucky. I’m fairly certain I remember the trip he was talking about – my second grade year when we went down and got the dog Waldo from a friend’s dad in Kentucky. He had a tobacco farm and gave us tobacco leaves to bring back for show and tell. A friend of mine that made a special effort to come to talk about how much my dad had meant to her, and so much more!
I didn’t tell about my dad, fixing our brakes for our truck and having spare parts….. He pointed out Ford always includes extra parts…. I mentioned my dad getting the boys animals, we always had lots of animals growing up. My dad once noticed our deer had escaped (yep deer, we had buffalo too), and chased it through the field with a ramcharger. down to the end and back. He got out and was trying to wrestle it, when it pinned him with it’s antlers to the propane tank. Antlers on each side of him!
There are so many more stories, many that I don’t even know, but having a chance to meet up with family and share stories was the best way I could imagine to say goodbye to dad. I would have loved to speak to everyone and hear all their stories if time would have just been able to slow down for a little while.
June 29, 1940 – September 23, 2017
Oakwood – Robert Carl Richter, 77, of Oakwood, passed into peaceful rest at 7:15 p.m. Saturday, September 23, 2017 at Illini Heritage Rehab & Health in Champaign.
He was born on June 29, 1940 in Vance Twp. the son of Wesley Thomas & Mildred G. Eldridge Richter. He married his wife of 50 years Karen McArdle on February 4, 1967 in Westville, IL. She survives. Other survivors include 1 daughter, Karla (Dr. Keith) Andrew, 1 son, Robert Richter, and 3 grandsons, Kevin, Kristopher, and Konnor. Additionally he is survived by 2 sisters, Ethel Eichorst and Linda Richter; 1 brother, Tom Richter, as well as many nieces and nephews. He is preceded in death by 4 sisters, Dorothy Mitchell, Margaret Brothers Hersh, Cleta Fern Richter, and Norma McVey, and 2 brothers, Frank Richter and Howard Richter.
Bob was loved by everyone he met and never met a stranger, even talking himself out of a speeding ticket on his honeymoon and inviting the officer home to go fishing to boot. He lived, hunted deer and mushrooms, and farmed within miles of the family land which like his family, was always important to him.
Visiting my mother this weekend, we stopped for dinner at McDs. The local gathering point for everyone in Oakwood. While there we noticed two of my cousins having dinner – from my grandfather RIchter’s twin brother Lesley.
Getting a chance to talk to family is always high on my list! I let them know how dad was doing – not great, he wasn’t even speaking during our visit. I’m pretty sure my dad had no clue who I was. That’s never easy… I had just listened to a podcast (to get off topic) about how dementia patients can be retaught things at each stage. Talking to dad and telling him about what is going on around him, what’s happening with everyone from his life and the area should help keep some part of his mind available for a little while. I try so hard to remember while there that he may not react and may not know me or speak to me, but some part of his mind may have a spark of understanding of who I am and what I am telling him. Something to keep a little more grey cells alive a little longer in his brain…. Anyway back to cousins. My cousins were at dinner and we were talking about dad and the topic came up about DNA tests, family history and what our future looks like.
We have a lot of family members with a history of stroke. My dad also has damage from a car accident when he was in his teens, and several farm accidents… My cousin’s (at dinner) mother was the one that held my dad while he was bleeding after the accident. Their father was the twin to my grandfather… Strokes are something to keep in mind as we move forward. I know I don’t have the gene tested for late onset Alzheimer’s, but that’s totally different from Vascular Dementia.
Now with DNA tests you can be tested for all sorts of things that can be passed down. Luckily I found that everything that is currently in the companies list is not in my DNA, but as I mentioned to my family… I think if it had been I would then be very careful about who I told that I had been tested. My assumption is that sooner or later that data will make it out. Will it count against some people for insurance? I was lucky to be negative on everything. I can see a time though where kids who haven’t even been tested get denied for insurance because their parents were carriers for the — fill in the blank — gene. If the data is out there you have to assume that sooner or later it will be accessed. With the current climate my assumption is that it is even more likely. Your medical records already contain the answers to the questions – do you have a family history of? How long until it’s expanded to include do you know anyone that has a gene for? A company now is even offering free DNA testing to expand their database and research…. How long until the group that doesn’t know their full DNA make up is a minority?
While talking the topic of what happened to my grandfather came up. I was in grade school (2nd grade I think) It was Oct 30, 1974 and my grandfather had a stroke walking into his house. He was half in and half out. My parents didn’t let us come see and they took care of everything. My grandfather had a housekeeper that had been taking care of him as a live in. As he passed away each of the brothers and sisters had to be tracked down to let them know… of course no cell phones. My Aunt Linda was teaching and her principle drove her over, my Aunt Dorothy had her phone off the hook and a neighbor had to be asked to run over and let her know, and my Aunt Norma was just leaving for a tractor pull in a semi. Aunt Norma and Uncle Lloyd owned a trucking company, big purple trucks, and an employee was able to reach them by CB. His passing away had been a complete surprise…
I remember going down and having the Little Debbie Oatmeal pies and the crust off his pot pies. Those two things still remind me of him. I don’t remember much about him, except those two things and pictures, but I do remember those things. He would take the crust off his pot pie and give it to me at a formica table in the kitchen. The oatmeal pies I remember being in the living room. I do remember one other thing, but it could be from years later as my aunt Linda was living in the house…. Concord grapes growing on the vine in the front yard. To this day I still love concord grapes! I can distinguish the taste from all the other grapes, I have no clue any other type of grape.
My mom has stories about us going to my cousins (Harold and Olives) for Halloween that year while they planned everything. I don’t really remember that part, which is probably a good thing since I still enjoy Halloween. Living in the country it was rare for us to get to go trick or treating except to relatives houses. A couple years we got to go in to town and go door to door with friends. My mother tells stories about me answering peoples questions about whether we lived in Oakwood with ‘Nos’ since we lived out of town…. I now am faced with the same feeling I’m sure she felt when I take my youngest in to the parade in Oakwood. We have a place right outside town, we have been in the area forever, but anyone that asks if we live there and I know my son’s answer will be nope!
I’ve said it before, it’s tough when your father is in that in between land of suffering. You haven’t lost your father – yet your father isn’t really there. You can be with your father, but not share memories. What you really have is a physical shell of your parent…. Friends post about missing their fathers and wouldn’t understand if you mention that you miss your father too.. but friends with their father’s are in that position where they don’t understand either. Unless you have been there you really can’t know what that limbo is like.
This year I helped my mother print a poster of my mom and dad to hang in my dad’s room. I’m hoping it will help my dad recognize my mother easier when she visits. His eyes are in bad shape from macular degeneration and the small pictures aren’t the easiest to see. We were able to email a picture to Staples and get a poster that is 2 foot by 3 foot printed in half an hour. Yeah!
Talking about growing up, I was describing to a person online the task of walking beans. Walking beans involves walking down each row with a hook and cutting each weed. I was so excited the first year I was old enough to join my dad and the ‘boys’ that worked for him in the field. I still remember the first day. My mom had taken us to swim lessons for the first time at the YMCA and I was in either 4th of 5th grade…. I wanted to go out and walk with those high school boys so bad. The first day was hot, but being just out of the pool I didn’t even notice. Mom had dropped me at the field on the way home. The field that was by where my cousin Judy’s house was later. We finished that field and the next day we were ready to move on to the field next field closer to my Aunt Margaret’s. My dad started the day early, while the beans were still wet. We took off down the rows and I remember one of the boys kept stepping on the corn hook and running it into his shoe. Of course my mind kept going to what would happen if he ran it into his foot!
Next thing I knew I ended up passing out. I’ll never forget waking up to find myself thrown over my father’s shoulder. Every step he took cut into my stomach and he was walking back to the truck. I remember saying something about being able to walk and my dad refusing to let me….. He put me in the truck, took me to my Aunt Margaret’s house nearby and made my mother come and get me. I was then BANNED from helping for the rest of the summer. I remember begging and pleading… telling them I was fine… but nope, I wasn’t allowed to work. Years later I would have done about anything to get a break from walking beans, but that year I wanted to so bad…
Now thinking back I can’t imagine how scared my dad must have been when I collapsed in the field. Around that time I had a habit of passing out. The reason was never found, but I passed out in a few odd places, off stools into laps, at school in the aisle (I got up to tell the teacher I was going to pass out), and even once in the vet’s office). I’m not sure if this was the first time, but now I’m sure my dad’s reaction was fear.
I wish now I could ask him about that day, it’s something we never talked about other than that summer with me begging to walk beans and my parents telling me no…. That’s one of the tough things about dementia…. you still have the person but the memories are locked in their mind forever to be lost…..
I recently read an article by someone about what she would tell her children if she was diagnosed with Alzheimer’s disease. We’ve actually lived through a few instances of both Alzheimer’s and dementia now and in the past. Both are pretty sucky diseases! I got the impression from the article (and I could be wrong) that the person writing it was talking about the disease that you see on television. The forgetful parent that is living in the past and is still mobile. For Alzheimer’s disease that was a stage we did see too. I won’t write much about it other than to say my impression was that the article was written to make caregivers feel guilty for thoughts they may be having. Thoughts that they already are probably having a hard time with. In reality, no two people with Alzheimer’s or Dementia are the same. When I say it’s a sucky disease I mean it becomes a disease like being locked inside your body with no way to communicate and no one has any idea if you are aware or not. Think awake coma…. In this case though there isn’t the television hope of they are going to wake up… the hope really is that they don’t suffer too much.
My Aunt Kate – Alzheimers
My Aunt Kate was my first experience with Alzheimer’s disease. We didn’t even have a clue what was going on at first. Growing up I loved spending time with her. She, my Aunt Lena Mack, and my grandmother had been the youngest girls in the family of nine kids in an immigrant family raised by my great grandmother. The lost their father in 1918 in the flu. My Aunt Kate had married a miner when she was young and then lost him early. She later met my Uncle Ralph who sold insurance and took photos – lots of phots, and developed them himself!
They lived in the coolest house. If I had been old enough when she sold that house in Danville Illinois, I would have bought it for sure! It is still there, but has been changed beyond belief. It’s beside DCFS and is now a hair place painted blue. It had a huge wrap around porch and at least 4 rooms upstairs. One of the rooms was a suite and my aunt and uncle never used that part of the house – except when we visited. One room had a huge walk in closet with a vanity also. I would go up and check out the vanity with the mirror and old style hair brush, ten wander around. My parents would drop us at my aunt and uncles when they wanted to go out and needed a babysitter…. My aunt always had a quilt set up in the dining room also. I loved her quilt frame and went on to have my husband create a similar one for me. My grandmother would piece quilts and my aunt would quilt them. She could finish the whole quilt in a month and her stitches were amazing.
Later she moved to a condo after selling. My grandmother sold her own house and moved nearby, and over time they moved in together. I remember though the first signs being in the apartment where my aunt started repeating the same stories over and over again. She had stories that we had heard a few times before, but it seemed those stories started coming up more often. Why she didn’t have any children was a popular one. At first though it was little things, nothing that we could really say for sure. Over time though it started to become obvious that memory as becoming a problem.
At this point I had left for college and was just seeing everyone on visits. On visits it still appeared my aunt was the same person but told the same stories a few too many times. My family had started to realize though. My grandmother and Aunt got a house together, alarms had to be put on the doors in case she wandered…. and my grandmother had to be the caregiver. But then my grandmother got sick… My grandmother found out she had breast cancer when my oldest was born. We had to debate live vaccines or dead vaccines at the time because of chemo… and rearrange baptisms so that she would be healthy enough to attend. The question though was, if the caregiver now needs care? So my aunt had to go to a facility.
My Aunt Kate at assisted living would call home asking to be picked up. She would try to escape, following people out. She also though would tell people stories about how she worked there and would run around making people’s beds for them. We would bring the kids to visit, and everyone loved them. As time went on her mind retreated and she started recognizing people as the younger version of people from her childhood. Visiting was good, she may have thought we were someone else, but it was good for her to interact.
Near the end though Alzheimer’s patient’s become violent. They are frustrated at the fact they can’t remember and they start to just fight back against everything and everyone. My mother dealt with that. Patients start losing their ability to do basic things. The toughest part is that their body in many parts is healthy, it’s only their mind that is suffering.
My Dad – Vascular Dementia
My dad on the other hand is suffering from vascular dementia. My father had been suffering from untreated high blood pressure for quite a while without realizing it. It apparently put little holes in parts of his brain. Additionally he had a motor cycle accident in his late teens that causes brain damage. The brain damage from the accident was so bad he wasn’t expected to live, but he had made it – and he recovered with just head aches. Now though the accident makes brain scans difficult.
One morning my father had a stroke, that was really the beginning of the end. The doctor found the high blood pressure and started treating it. My father’s family though has a history of strokes and my dad’s strokes didn’t stop them. My father has had trouble with clotting and each stroke the doctors wouldn’t realize what was going on until later. I remember a call where my mother called me and said that my father couldn’t move his hand anymore, had slurred his speech but the doctor over the phone said it couldn’t be a stroke and not to bring him in…. I don’t even have a medical degree and suspected stroke…. Two days later they decided it maybe was a stroke and put him in the hospital.
After a couple years of this, a doctor decided my father needed a heart valve replacement. My father was having issues with memory, slowly slipping. My mother was still able to leave him for short periods of time (though he once threw away their smoke detector when cooking in the microwave). My dad was doing a few odd things like he pushed a grain wagon in the pond by mistake, but he was puttering around the farm… still going out and interacting sometimes. I have a video of him sword fighting with fake swords with my youngest. We debated the surgery though….. without it according to the doctors, my father wouldn’t have much time left. Ultimately we left it up to my dad, who originally was saying no, but in the end said yes.
Ultimately the surgery was the final straw. Unknown to us at the time, surgery like this can cause a drastic decline in some older patients like this…. and my dad was one of those odds. He went through a personality change that was a little tough to deal with, his memory quickly decreased, and physically he never fully recovered. As he declined quickly he needed a walker, but couldn’t remember to use it. Not using a walker when you need it, leads to falls. So we were dealing with health issues, behavior changes, and other new issues and my dad wasn’t a small man.
Moving into memory care, because of the behavior changes, caused my dad to have issues with caregivers in the facilities. Men are much more rare in nursing homes. My father was sent to locked wards at first to adjust his meds for behavior, then the first facility took him and just dropped him at an ER and said they wouldn’t take him back. We were new to all this, dealing with documenting everything, but lost really. Luckily we found a facility in the Amish community (a couple hours away) that was willing to take my father. Due to the first facility my father had been blacklisted everywhere close. After a while my father was able to be moved closer and is now a lot closer… but now he’s no longer in a memory care unit.
Vascular Dementia really can mean that the memory only declines each time there is new brain damage, usually in our case from a stroke. My father’s body itself has failed him completely. He can’t walk, doesn’t use one hand, and is pretty much locked away. My father was always active. My dad was a farmer… He doesn’t normally speak unless you ask him a question, and then sometimes he just stares at you. We will continue to visit, but to me it looks like he’s being tortured. Kind of like the people on television given paralytic drugs and set in front of a tv to watch glimpses of their families lives with no hope of ever escaping.
What I want my Kids to Know
For me I want my kids (and how we decide things) to make decisions that they can live with. There is enough guilt no matter what you decide when dealing with these things. Don’t ever let anyone else make you feel guilty over any choice you make. Never second guess a decision you have made, you can’t back and change something you decided in the past – so just move forward and make future plans. I can say don’t feel guilty over anything you decide or do, but no matter what – if you have anything to do with the decision, you are going to feel some guilt over some parts of what happen.
When Alzheimer’s and Dementia patients reach the point where they no longer remember family and start becoming violent, or the point where they can longer answer questions and just stare, it’s hard to not feel like they are being tortured…. actually some even earlier will tell you that they are being held against their will. They will call at night and ask to be picked up, taken home.
I don’t include normally much about what my dad and mom are going through now. If anyone is going through Vascular Dementia and wants to talk privately though they are always welcome to contact me.