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….
My son is currently doing a project on family culture…. I think the class is cultural anthropology. The real question is what is our families cultural history. I also was struck recently seeing online a quiz a teacher gave for extra credit on race. The real question comes from if your family immigrated to the US (aka great American Melting Pot) at the start of the country, what is your cultural background?
My grandmother Wakeland’s family immigrated to the US in the early 1900s after 3 of her sisters (my aunts) were already born. I can link superstitions and our Catholic upbringing to them… but beyond that it becomes more of a question. My husband’s family came to the US in the 1920’s, but didn’t really bring a lot of cultural heritage that we know of. The family was also Catholic, but didn’t seem to have all the superstitions that my Italian family did.
For my family the McArdle on my mom’s side and all of my father’s side, were more the been here for ever, what would you consider culture.. but maybe that is a culture?
Culture is:
Family tradition, also called Family culture, is defined as aggregate of attitudes, ideas and ideals, and environment, which a person inherits from his/her parents and ancestors.
Both sides of the family have lots of family history to fall back on. There were strong attitudes too, most were incorporated into the family for generations… My ancestor Rev. John Corbley’s museum still has a family reunion every year at the church near his former farm. Rev Corbley was originally part of the House of Delegates for the state of Virginia, but was voted out due to separation of Church and State in 1777. Corbley was not an ordained minister but was thought to be enough of a minister to be ousted from the government.
Corbley later was part of the resistance during the Whiskey Rebellion when the settlers objected to the first tax imposed by the new country. The government made a new federal tax on whiskey distilled in the area of Pennsylvania. President Washington later released everyone and sent them back home. Stories from Corbley’s life tell of him being allowed to go out during the day and return to the jailers at night until finally being told he could return home to his family.
Other stories from the family include tales of family that were some of the first Postmasters (McArdle), platted towns (Edward Corbley), Farmers (Richters), and even some of the first school board members of their area (Abraham Lincoln Richter)…. These ancestors all helped shape the country that we currently live in. Many faced adversity and though some have faded into obscurity, they helped make the nation that exists today.
The question really is though how does this fit with our current family’s culture… When I think of it, I see my mother who is now active in the Daughters of the American Revolution… many of my cousins and aunts that have been active in politics. I also see my cousins and my children doing what they can to help others and standing up for those in need. We’ve tried to instill in our children to help people when they see injustice or need. Though we sometimes slip, we try to focus on the positive.
Every one I know is a mix of something. It may be race or religion…. or it could even be brain wiring. Not everyone’s difference’s are visible, but they all matter. To me it seems whatever your own difference, that’s the one that is the widest divide……
I do a lot of shopping on Amazon – A LOT… before Amazon I went to the store, I’d get in my car and head to Walmart or the grocery. The boys needed clothes, shoes, a book bag, or book no problem! I’d head to the store… and I could usually find it. Now though I shop at Amazon. I can find most things I need and as long as I have a couple days leeway I cam good. I’ve even been known to head to the store, see something and order from Amazon while in the store. Sometimes because the store was out of it, sometimes because the price was so much cheaper online. When I head to the store I do intend to buy at the store, but for big purchases or specific items I have frequently end up searching. Our book store is limited now, we only have a small fabric store with high prices, and my son is really specific on colors, characters on clothes, and even what type of fit and design his clothes have. So amazon it is…. even to find his size, I’m stuck going online. He really needs an 8 Slim now and will only wear an elastic waist. His preference is no drawstring, but I can cut that out. Try finding that around town.
While my dad was in school and his mother was still alive, the common place to get things was a catalog. My grandmother Richter would order things and if they fit, yeah! If not you wore them anyway. Items were then handed down through the kids. I remember sometime after I was in 2nd grade, my dad having a toe removed. From the story I remember it had to do with the wrong size shoes my father wore all the time while growing up. My son loves wearing his shoes too big and I can’t bring myself to make him wear shoes that might be in anyway small because of this memory.
My aunts also told a story recently about my grandmother taking them to a store in the nearby ‘big’ city. It would have a sale each year and they would drive over to stock up. My grandmother was finally learning to drive and they had a huge car. My aunts pointed out a spot where 49 turns north and mentioned that it’s where my grandmother was hit while taking them to the store and learning to drive. She never drove again. It was also just a little before she became sick. – So I’m guessing it was sometime around 1950….
While my aunts and uncles were growing up, Sears was the ‘Amazon’ of the time, just with a catalog. You could get almost anything! I remember seeing houses that were known as Sears Craftsmans – usually built by the tracks because the parts were delivered by train. The houses were ordered from the catalog.
Sears now has lost market share and is closing stores. It’s hard to believe they have gone from the giant that was the go to for moms that needed something that couldn’t be found at their local mercantile, to a closing business. It makes me wonder what the future of Amazon will hold. I did recently see an add for a ‘new’ service’, order online and pick it up immediately on site! Yep they have just reinvented the store again. Are there still new ideas to be developed?
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.
Family History:
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.
DNA Tests
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?
Grandpa Richter
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.
Halloween
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!
For the Fourth this year we decided to hang out at Oakwood. We are getting excited about moving home and had to head up and spend the holiday checking out all the fun things we could do. Living out in the country is totally different from living in a subdivision… everything from the lack of neighbors, the lack of constant noise, and a to do list a mile long… oh and internet and services being spotty. Groceries and food being a drive away… Even the fact that cable is not an option.
Eating at the Old House
We started by picking up pizza on the way out and taking it to house. We proceeded to eat at the house I grew up in. My brother has been redoing it and it looks completely different. If you have read my stories though, my whole childhood was my parents redoing the house, so the changes are not really anything different from the constant state of flux my parents had the house in. My brother has done a great job so far though. He’s doing everything himself and it looks pretty amazing. My brother has a huge dog (St Bernard) that my youngest hasn’t adjusted to, so we are still working on that one…
Swing
We have had a swing for a while and hadn’t had a chance to hang it. This trip my brother finally helped, and it is hung! It holds 600 pounds and everyone kept taking turns to swing out in the yard. It’s got a great view also, so we had a great time out on the swing – in the shade too!
Toads
I had to mention the toads though! They were everywhere. There favorite spot though is at the garage door. At one point we were seeing 7 or 8 toads hopping around right inside the garage…. I’m not sure what the thrill was with the garage but the toads seem to have found it. There were also squirrels making a racket – to me they sounded like toads, but my mother was convinced it was squirrels. We were seeing deer everywhere too. Out in the country we don’t hear the constant sound of cars, lawn mowers, and people, but the animals are always there….
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Going to the Pancakes, Parade and Fireworks
Oakwood has a pancake breakfast at the firehouse on the 4th first thing in the morning. We HAD to head out to that. The parking is a mess, but we did it. We were there early enough that we were able to head back to the farm and get our wagon and ice for the parade before heading back out. Parades in a small town include candy, people you know are on floats and kids are everywhere. My mother’s goal is to collect as much as she could, but it was fun! Despite the way to hot weather this year, we had a good time.
I tried to record the fireworks. I’m still not sure how such a small town can have such a big fireworks display…. but they do. I managed to catch all but the final set. It was odd not having our own fireworks, but I’m sure it was much more safer. We did make up for it, but shooting off my dad’s canon before though.
Clearing the Pond
Shooting the Canon
My father built this canon many years ago. My brother and I have never tried to load it ourselves, but it was time to get a video of it going off. To load it, we use a Dixie cup of gun powder (I said mix flour in like my dad did sometimes), a fuse, and some paper. Shooting something out of it seemed a bad idea.
We loaded the canon, got it lit… and of course the first try didn’t go off. We then had to test the gunpowder, and then try to relight it. My middle son managed to catch it all on camera.
My father had built the canon with a special order barrel and it’s now been shot many times, including at the grand reopening of the bar the Little Nugget. It’s been stolen and returned, and it’s a family legacy to pass on….
Driving the Tractor
Finally we got my little one to sit on the tractor with my mother. It won’t be much longer until we can get him to drive it!
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!
Memories
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…..
We have had a swing for a while and hadn’t had a chance to hang it. This trip my brother finally helped, and it is hung! It holds 600 pounds and everyone kept taking turns to swing out in the yard. It’s got a great view also, so we had a great time out on the swing – in the shade too!
My father built this canon many years ago. My brother and I have never tried to load it ourselves, but it was time to get a video of it going off. To load it, we use a Dixie cup of gun powder (I said mix flour in like my dad did sometimes), a fuse, and some paper. Shooting something out of it seemed a bad idea.
