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.
I found a new show recently – “Mary Kills People” on Hulu. It’s about a nurse running around helping patients commit suicide when they decide they can’t take it any more and don’t want to suffer through the future ahead. In the show they talk about the fact that Switzerland allows doctors to help with physician assisted suicide.
The question frequently comes up about why we make family members suffer, unable to communicate, not able to recognize us, unable to move their own bodies – when we treat an animal with a life ending disease in a way that seems more humane. I’ve thought about it as I watch my dad waste away. No longer able to recognize us. I remember the times he asked nurses to help him end it. I’m fairly certain he wasn’t joking. The thing is in my dad’s case it’s easy to see he’s being tortured, he vocalized what he wanted several times… BUT if it was really a thing like in the show how do you decide? How do you separate the family who have just decided they don’t want to pay for more care, or that their family member is taking too much of their future inheritance. That’s really why it can’t happen….
A friend told us about families that just drop parents and spouses at their hospital with no name and leave them. They can’t take the cost, the worry, and all the things that go with being responsible for someone in care anymore. It’s like being responsible for a 200 pound baby. What really makes it sad though is that when you look at this 200 pound baby what you really see is all the memories of the person that was, and though with all your heart you want the person to be who they were before whatever awful disease has eaten away at their body and mind…. it can’t happen. Personally I think it has to be easier for people whose family still have their mind, but I haven’t been in that position…
To help my father feel more comfortable we’ve decided to go with Hospice. He no longer recognizes people, no longer talks, can’t eat, can only drink thickened liquids, he can’t even hardly move on his own…. Hospice will help with pain management and anything else they can do to make him more comfortable. Hospice also works with families to help them deal everything. As much as it seems like it should be easier to make decisions in a situation like this… and like at this point it’s been accepted that loss is inevitable – > There is no magic solution that can make a person with dementia or Alzheimer’s better….. It’s still stressful. You do want the person back and you still have the memory of what you assume is locked somewhere in their mind that they can’t get out anymore.
I’ve had ‘friends’ message me with the, if you just give your father the right diet, he can be ‘fixed’. Then there are the posts from people that think that any post about the difficulties dealing with dementia and Alzheimer’s are a betrayal to the family member and you should just be glad that you can spend time with them…. and finally there are the friends that have recently lost their parent. The friends whose parent died a quick unexpected death or died from something like cancer where they got sick, fought it, the friend stood by their side though treatment and they passed away. I do feel for them, but it’s hard to find the words to respond when you are thinking about the fact that you know your own parent would have preferred to go quickly and unexpectedly. Really though you are thinking you are stuck in the limbo, you are in the group of people that still have their parent… but what you really have is half your parent.
Additionally friends are interested at first, they want to know how your parent is doing… but too much and it drags them down to, so the stress is all your own. It’s the same as a chronic illness. The more you talk about it the less friends and support you have.
We are just beginning our hospice journey though our dementia journey has been going on for a while. It may or may not be a long one, but I think it will be helpful, for all my family….
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…..
It’s really tough to deal with the lose of anyone, especially a close family member. A fried lost a parent and being the child though of a father that is currently suffering with dementia, you are in a tough place. I’ve mentioned before how tough it is to deal with the issue of others grief when you are faced with a parent that is being tortured inside their own body. It’s bad form to respond in a fashion of – I’d trade places. You want to try to explain how you are so happy that at least their parent didn’t suffer for a long time being tortured inside their body with a mind that doesn’t quite work right and can’t control their own body. How great it is that they went quickly as opposed to suffered in a position of not even knowing who you are, while you visit to make sure they are being treated well – all the while wondering if the care facility is just getting them out of bed for meals and that few minutes a week or day you come visit.
Personally I will miss my dad when he is gone, but I also already miss him while he is still here. There are so many questions that I would love to ask him. Yet the main part of my conversation comes down to Does anything hurt? Do you recognize me? Do you want a Pepsi today?
So we remain silent and simply say sorry for your loss…. And I know jokes are told to help lessen the hurt, but probably not taken well….. It’s just a way to make it through the day, because I do miss my dad, especially when I visit and talk to him.
I’m hoping to come up to see dad this week… As I’ve mentioned my dad has dementia and has had many strokes….
Holidays like father’s day are a little hard, wondering how much he is aware of what day it is? I feel bad for my friends that have lost their fathers, and I also envy the friends that can spend the day with their fathers, and I am so glad my boys have a good relationship with their dad…. but I have to say being in the in between time….seeing your dad suffer through, you are happy you still have your father, but you are sad that your father is in so much pain and confusion. And you (and no one else) can’t make it easier.
My father is actually really young, only going to be 76 next week! In my dad’s lifetime he has really done a lot and had a lot of funny stories, though he hasn’t been a huge number of places. My dad did join the reserves in the 60s during one of the wars (or was that a military action)? He was in California for 6 months for that, and I remember hearing about a trip to New Orleans, but other than that the only other trip I ever remember hearing about was my parents honeymoon – and that was the story of my father of my father talking his way out of a ticket in Georgia and inviting the police office up to their farm to go fishing!
While growing up, I remember the short trips when we were younger to places like Louisville (I got dropped off to stay with friends), Kentucky to pick up a dog named Waldo (we brought back Tobacco leaves to show for show and tell) and St Louis to visit cousins. My dad also took day trips a few times to pick up cars and animals.
Most of my dad’s stories though involved highjacks he and friends had been involved in at one time or another, or things that had happened while farming. My dad had an ability to tell a story that everyone loved to hear. He had stories about everything from building a rock dam across the stream that is now by our house and flooding out the road to driving a tractor with wagon and having a semi try to pass him on a curvy road and lose control.
Dad also was always willing to help anyone that showed up at the door. People would show up at all hours of the day and night stuck on the road and dad would grab the tractor and pull them out of the snow or mud. Presents would be dropped off, usually a bottle of alcohol – that my dad rarely drank, but sometimes we would end up with an odd thing like a Datsun once with the clutch ripped out.
Growing up dad would hear about or try something and think, oh I need to try that, and off he would go! With that he built a still once – I’ve heard stories about people lined up and even laying under the spicot! Dad also heard about a man selling off animals and ran off and bought a Fallow deer at one point. Several years later dad tried a Beefalo burger and decided to try to recreate them. He and a friend drove across the state and bought two bison! Each family got one.
My dad lost his mother, my grandmother, in his early teens. She suffered for a while at home from cancer, and I know it affected him a lot. My dad would avoid hospitals, saying people die there. The story he once today, and that’s one he didn’t tell normally was that my grandfather brought in preachers to pray over my grandmother to try to get her better, but nothing worked. Dad also wasn’t a church going person. “If you just believe enough”. All through the eyes of a child, it was hard on him losing my grandmother.
He went on to wreck a motorcycle in his teens and have massive head trauma. My Uncle Tom was working in a nearby field and noticed, rushing him to the hospital. My dad was lucky to have survived and had to go stay with my Aunt Dorothy for a while after to take care of him and recuperate. Yet my dad did still manage to finish school high school.
He then went on to farming, starting with farming others land and working up to buying his own land with my mother after being discharged from the military.
Growing up my dad used every chance he could to play at the same time. He was extremely inventive with farm machinery too…. I’ve always said we were lucky to survive childhood! At two my dad made a go cart for me using a drill that was plugged in for a motor. He would put us on sleds (as toddlers) and pull us behind lawn mowers through the snow, put us in the scoop of the tractor and turn it into a fair ride going up and down while spinning in a circle, and I’ll never forget the nails and things I ran through my foot running around the barn yard. (The barn had a huge supply of food in it, ie. collection of bunnies)
My dad now only answers questions asked of him sometimes, speaking is difficult for him, and it’s hard to tell what he is really aware of. He’s in an assisted living facility, which I’m sure to him is just like a hospital that he so hated. The last time he was in the hospital and fully aware, he removed his own iv and tried to call for a ‘breakout’ ending up in someone else’s room.
So what do you do when you are in the middle ground? The ground where no one understands except those that are there with you in the same journey? And like them, everyone’s journey is different – dementia takes every person at a different rate and if a different way. With some you still see glimpses of the person that they once were, and with others you see nothing. Do they know you? Some like my dad have a body that is fighting them also. My dad now won’t use one side of his body due to strokes. That side of his body is atrophying. Family may say, I want to remember him as he was, but they also would be the first to be upset if you voice an opinion that he might now want to live in the condition he’s in? And what to do with the guilt many have allowing the thoughts to creep in that your parent might be better if they give up? It not politically correct to ever voice those feelings…. and no one understands, those that have lost their parents to some quick illness or accident, especially don’t understand.
How do you explain that what you are really voicing is the fear that your parent is going through torture and your job has become trying to figure out the best way to increase quality of life and not increase quantity of life without them suffering?