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.
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?
There are things that they don’t tell you about Dementia…. Like the fact that a dementia home can decide they are refusing to keep a resident any longer. Really they aren’t supposed to do that. But it happens, and it happened to us, recently. Some of the behaviors of dementia are things a lot of people don’t talk about, but they apparently can make some homes throw up their hands and give up. When you’ve never dealt with this before there isn’t a book on what to then do with your parent, who you turn to for help, where you find a new home for them – and believe me at that point you are totally confused, upset, and in a lot of cases embarrassed. In our case we were dealing with a nurse that had an attitude also that didn’t really help.
For us the final straw was my father being dropped at an emergency room with the nurse at the dementia ward of the nursing home saying they refused to take him back. To top all this off they had included lots of things on his papers that made other nursing homes afraid to take him in. The social worker at the hospital tried to help by calling a few places, my mother called everywhere close, and my dad stayed in the hospital waiting for 6 days. Not knowing what to do we finally called nursing homes and dementia wards at a further distance away. We were lucky and found a place 1 1/2 hours away (and I have to say they definitely seem to know what they are doing a lot more than the first place!). Besides calling other nursing homes I tried other leads, we had been eliminated from the VA because all my father’s active duty was ACDUTRA which apparently disqualified him., so I started calling all the organizations with fancy names that included long term care in their names.
The Association of Long Term Care Nurses for Illinois (or something similar) was nice enough to point me to the Department of Public Health. It turns out, you are required to be given 30 days notice before being turned out of a nursing home and they have a group you can complain too. It may not come to anything, but at least I felt better having someone listen.
I just have my mothers stories but the new dementia ward my father is at seems to care more. The nurses are always seem to be with my dad when my mother visits, there haven’t been all the calls saying he has fallen when he escaped notice anymore. They put a bed alarm on him to make sure he doesn’t fall at night (this is something the first place said was illegal to do????)
The thing though that brought me to tears was when they brought my dad the phone and dialed my mother when he was concerned about her safety. It reminded me of the times when my mother and I would be somewhere and my dad would call to tell us that they were having a storm and we needed to find a place to stay so that we would be safe. – Forget the fact that he was in Illinois and we were in Arkansas at the time, he wanted to be sure we were safe. That was a few years ago and now having them show the care to help him call to ease his mind really made me feel that was the right place for him…. BUT I also was able to see a small glimpse of my dad again. Some of the old thought processes were there. It may not be a lot, but at least it’s something.
It doesn’t really matter what causes dementia, the problem is that it isn’t covered by health insurance! Most people don’t realize how expensive it is either. A nursing home can cost between $5000 and $7000 or more per month for dementia care. All out of pocket unless you qualify for Medicaid (have less than $1500 to your name). For a farm family this literally means losing the family farm to pay for care.
Farmers that do plan ahead get Long Term Care insurance ahead of time. (We are dealing with filing for benefits now.) It’s paperwork, run around, and lots of work to get the benefits when they are finally needed – and that’s after they push the ‘grace period’ as long as they can.
Long Term Care insurance policies are also only good for a set amount of time – so the issue also becomes at what time do you enter the nursing home to use all the benefits without going over. Basically what is the family members life expectancy, if you miscalculate you can still ‘lose the farm’.
We have in our own situation looked at other things, but the biggest issue is that we are stumbling around blind. Whether you get an advocate, get a lawyer, or just get friends that have been through it, every situation is different.
For example, my father was in the reserves, but was told that he was serving active duty for 6 months near the end of his enlistment during the Vietnam war. We are filing for benefits, but now we are being told it may not count because it was classified as ‘training’! Assets become an issue also and income definitely does. From the sound of it my mother would need to be destitute and live on nothing for my dad to get benefits? If he had qualified…
Anyone with suggestions on ways to pay for dementia care when a family members becomes unmanageable at home?
My father is growing old. We’ve said he has dementia, but the true story is a little tougher to deal with…
At 16 my dad wrecked a motorcycle. I’m pretty sure he didn’t have a helmet on, not even sure helmets existed yet – and I’m sure they weren’t common. The story I’ve heard is that my Uncle Tom saw him wreck and ran to get the car. He then drove him to the hospital, where it was expected my dad would not survive. Dad had brain swelling (this was the 50s!) and I’m sure the drs said there wasn’t anything they could do for him. Amazingly my father survived though. He was in such bad shape that my grandfather, being a widower farmer couldn’t take care of him, so my dad was sent to live with my Aunt Dorothy. (She’s fairly colorful, so there are lots of stories there too) I should mention the year I was born my father wrecked a convertible Corvette – TOTALED. He was with my cousins Joellyn and Judy and they only survived by being thrown from the car. It rolled over…. Luckily no head trauma then though.
My dad went on with headaches and more, growing up to be a farmer himself (and having me and my brother). Not fond of medical care, my dad didn’t see a doctor for years. I do remember a kidney stone when I was in grade school where my mother had to take him to the ER, but other than that, NADA. Then finally a few years back my father has a seizure and they find his blood pressure is sky high. Not only that, but his blood pressure has been sky high for quite a while. (High blood pressure can cause capillaries in the brain to burst) My father’s blood pressure had went on so long it had caused damage!
My dad is convinced that people die in hospitals, which leads him to try to escape every time he’s in one…. This has led to him removing his own IV and being found in other people’s rooms a few times and the inevitable calls asking everyone to come and take him home…. BUT at that time the drs thought they had gotten it under control.
Skip forward a few years and my dad has a stroke (they run in our family). The doctors had a really hard time with the stroke due to the mass of brain damage (see the motorcycle wreck mentioned above), but finally they decided it was a stroke. Since then he has had a couple as well as his heart valve replaced (because it was leaky?).
So when we look at my dad and know he can’t remember, or is having a bad day – how do you decide.. Does he have dementia or brain damage? My thought is that dementia steadily gets worse where as brain damage (if the underlying conditions are treated) will not get worse unless there is more damage to the tissue.
Even knowing all this, really knowing the cause in this case is just knowledge. Does it help with his treatment? Would it change anything?
I think my answer is yes it does change a little, I have his genes. I need to decide whether I check off Alzheimer and dementia in my close family history. No one else in my direct line had dementia, so does my dad or is it brain damage? Is it my future?
I thin on my family tree medical conditions is something I need to start adding. I think I should add not just COD (Cause of Death) but also major chronic illnesses. My father also has Padget’s disease. I know that is hereditary! It’s something I need to watch out for just in case I received those genes.
Do you track medical conditions in your family tree?