The Demon Dementia

Dementia. We all have heard of it and it's vile course to rob the brain of its clarity and memories. It can also lead to physical deterioration in it's progression. It causes the brain to slow and eventually stop functioning, which means triggers that are sent to parts of the body to feel pain, sensations on the skin, loss of muscle control and so much more. A person with Dementia can forget to eat, how to groom, proper hygiene and how to basically maintain simple everyday functions that we just do and sometimes often take for granted.

But while Dementia weakens the body, it robs a loved one of the things in life they once remembered and loved. People. They can become aggressive when they believe they should know something or someone and they can't quite figure it out - or worse, they truly believe in something that this monster devised and they are disillusioned from it's path of destruction on the brain.

Alzheimer's is said to be the common cause of dementia, but for my beloved grandmother, she rarely showed symptoms. Well, symptoms could have been there, but they seemed like the typical stages in aging. Growing up, grandma would called everyone's name (even the dog's) before getting to the right name. It was like a classroom role call. She always corrected herself. She had so many people living in her home and sometimes stress levels could run high, causing confusion. She never showed signs of making bad decisions or forgetting things completely, just the normal short-term forgetfulness that we all encounter as we get older.

It can be very difficult as a care giver or family member from being impatient, but we have to keep in mind that as much as we are impatient, or grow frustrated, so is the person trying to figure out and associate what they know their brain is supposed to be doing but can't. They don't understand and grasp what is happening. It's like they know but can't figure it out because of the soupy fog in the brain.

It is doubly frustrating when in just a short time, someone who was the Matriarch of the family as my Grandmother is, loses all capability to do the things she's loved, such as cook. There are many nights the Dementia has tricked her into thinking she prepared a big dinner for her family. She was the homemaker for 50 + years, cooking every night, then preparing breakfast and lunches for my grandfather, then her children, then her grandchildren. So, most nights, I let her think she cooked and I will tell her how good it was. Some nights when I make dinner, I remind her she didn't cook and she can sometimes get a little upset when the meal she thinks she prepared is not being eaten.

One night, after being in bed all day, she called my son into her room to ask Kayla (my sister, but she meant me) to go to the Acme to get soda. I went to her room and asked why we needed soda. She replied, "The people are coming over, I can't just give them alcohol and beer." I asked what people and she responded, "My sisters (she had five, three of which are still living). She then asked what I did with the meat and potatoes she made and I tried to correct her, saying she didn't cook, she was in bed all day, and that upset her, so then I just replied that we ate it for dinner. "All of it? she asked. "I put the leftovers in the fridge," I replied. And she seemed fine with that answer.

They say it is easier to just go along with their thoughts and , but I understand why people fight it - they want the dementia victim to focus their brain and try to rationalize and break through the Dementia fog and fight to get those memories and thoughts back. I GET IT.

Most days, she takes a long time to respond to simple yes or no questions, and you can see in her face she is trying to think of an answer. She has not forgotten who people are, per say. She knows names and who they are to her, but sometimes when she sees us, she thinks we are other people, such as her sisters, or she sometimes confuses 25 year old brother with my 10 year old son or my 23 year old sister and I (I am almost 40). Though she is 16 years younger than me and built differently, we have similar facial features and at one point, my hair was brown and we both have the same shaped glasses. I dyed my hair back to match my gingery color from growing up to prevent some confusion for her.

My grandmother is also a severe diabetic and as she grows older and her organs can't keep up. She also retains urine, so she has a permanent catheter and has chronic urinary tract infections, causing her blood sugars to spike high and stay there, which can cause a whole other set of issues such as cardiac arrest, hallucinations and incoherent speech, much like a stroke - and she's had those too, one which I recently witnessed for the first time about a month prior to this post. The vision haunts me. As soon as it came on, it went away. I can only imagines how much worse this combinations makes the Dementia, considering the UTIs alone cause brain fog, not to mention what else it could be doing to her body in other aspects. Every time she's had a stint in the hospital, her brain has deteriorated a bit more. Sometime,s, I wonder if the UTIs are actually what brought on the Dementia.

Often times lately, my grandmother thinks her sisters are picking up my grandfather (deceased since 2011) or she lives in her past a lot, talking about her father. She even recently went to a Hindi wedding! (She is probably thinking a dream or something on TV is reality sometimes). She tells me she knows she has Dementia, that it just comes with old age, and that she likes thinking about the days of growing up. she knows she isn;t crazy. (There is a far spectrum between being I've always loved hearing her stories of those times, and I tell her it is okay to live in those days, they were when she was happy and she hag a lot of good times, just don't forget us kids too.

After all this time, the thing that finally made me break down was one of her last days in the hospital back in early January. 2019. She kept mentioning that I have a little girl. She does not know her name. At first, she would say she saw the little girl outside, so I figured she saw a spirit. She didn't want us to think she was crazy (which I would NOT have). I only have my son. I felt she was confused that I was my mother and confusing me with my sister again. She tells me no, and she has the birth certificates in her safe to prove it, and I won't change her mind. Sometimes it makes her angry. I try to reason with her and tell her to slow her thoughts. If I had another baby, didn't she think I would know about it since it's my body the child came from. She is persistent. When this first started, she used to get so upset when she never saw my 'daughter' and I always went out with my son. I ended up telling her that she was at a sleepover. She still asks for her from time to time, so I just tell her she is sleeping or something that will not agitate her.

At her last stint at the hospital this past Christmas and through New Years, it was determined the the little girl is me. She was talking on and on and it crashed onto me like a ton of bricks. That was probably the first time in over a year knowing her diagnosis I cried. Though she knows I am Jamie, she also thinks I am my mother and she told me some very interesting things.

(Take that, siblings-I am the favorite! She did raise me!)

As far as aggression, which most Dementia patients can have, she has not had any, beside the once in a while frustration and grumpy days, but I know that can change as this disease progresses. We have been lucky thus far that she can't walk and will not be one to wander or get lost. Caring for her is simple for me. I have mastered bed bathing/dressing, which was a challenge at first when I didn't know how to. She is fed and given her medicines and when it is time for her to get up, my brother, though hurts himself becasue he wont put on her braces and shoes for her to stand - puts her in her wheelchair and then into the living room.

Is it easy?

No, but we make it work. We focus our schedules around her care and before I do anything outside of the house, I make sure she has been fed and attended to. I work full time and I am single mom. My brother is young and besides school, he stays in a lot. I would say that being a care giver can be isolation. Yes, it can be, but thankfully, we can rotate so we both can get out. As the demon continues to take over grandma, I am praying that we can continue having it be this easy and she remains as easy as she is.

I've come into my grandmother's diagnosis fully knowing what to expect and what the outcome will be, on top of her other issues with diabetes and chronic UTIs. The key for me is to take it days by day as it comes. I try to be as patient as possible and let her know she is loved and not a burden. I usually act as my silly self to make her laugh, especially when we have the intimate time together when I have to wash and clothe her. I try to joke around and make light of the situation at hand. She truly is the reason I am the woman I am today and now it is my turn to care for her as she did for me. I know we cannot defeat Dementia, but at least I can fight back for her as best as possible.