I have worked as a caregiver for 13 years, and I have seen so much. I have cared for many people with dementia.
My first experience with dementia was with my Great Grandmother who lived to be 97. When she was around 95, she started wondering around at night, and she lived on a lake in Florida. How scary is that to have your Grandmother doing that. Luckily nothing happened. She came out to Colorado so that my family could take care of her. I was only 15 or so. She was telling me, that she “lived on the lake, and it was right outside the door”, and she was in my living room. For a minute I was scared, then I thought about it and realized she has Alzheimer’s. My great Grandma forgot who I was, and thought I was one of her sisters. I had to play along, this is sad for a child. Anyway, she remembered who my my Grandmother was, her daughter, which tells me that she was stuck in like the mentality that she was about 30 years old. She would make me laugh saying “oh my daughters on the phone with one of her friends again, that’s all she does”. I would go visit her and she would be crying, that tells me she could possibly have lewy body dementia. I’m not a doctor though, I’ve just had classes, and have worked with it forever.
Before dementia, my Great Grandma was an incredibly awesome, successful, hardworking person! Strong physically, strong willed, full blooded German, hearty person. My Uncle said I take after her. She had my Grandma during the depression, they opened their own electrical business, in Chicago, worked hard, survived the Great Depression, and made it! They sold their business many years ago, and you can see their business logo in Chicago, “Jemison Electric”, to this day. They helped my Dad be successful and gave him an opportunity to have an electrician apprenticeship. My Grandma would work sun up to sun down, took care of the business, cooked and cleaned, and helped take care of her 4 Grandchildren. To see her forget everything was devastating.
My Grandma had encephalitis (swelling of the brain) when she was 40 or so. This partly caused dementia early in life. We noticed her not being able to care for herself. I stepped in right away because I had been a caregiver and a medicine passer for 2 years already. I was only 21 years old, a baby. But taking care of one family member, is so much easier than 40 patients. Yes, it was sad. I had to shower, clean, feed her, do her medicine and vital signs. She was upset about this because she knew something was wrong with her. This is the bad part about this stage of dementia, know that there is something wrong, feeling trapped, and not being able to do anything about it. She never ever forgot who I was, I am so grateful. I grew up with her within a few blocks distance. She had several strokes, It looked like she had vascular dementia. I got pregnant and couldn’t take care of her, I had guilt. She lived in a memory care unit for a company that I work for now, I don’t really like this company, I think they are too cheap with their residents. Luckily my Dad, Aunt, and I would go in there and feed her and so on. I was with her the day and minute she died, and am happy that she didn’t die along.
What is dementia? It’s an umbrella term for several different kinds of dementia. In a training I was told there are 100 dementias, I don’t have time to look up if that’s true.
Alzheimer’s is the most common form of dementia. It makes up 60-80% of all the cases of dementia. Alzheimer’s is disease, dementia is not. When a person has Alzheimer’s, their brain is shrinking and deteriorating . They forget how to walk, eat, and eventually swallow, and they die. On average people live 4-8 years, but depending on certain factors, they can live a lot longer. Alzheimer’s is just one from on dementia under the umbrella term.
Other common forms of dementia:
Lewy body dementia: Decline in thinking, reasoning, and functioning in day to day life. Lack of controlling emotions, a lot of crying, possibly aggression. Hallucinations. Lots of falls
Vascular: Decline in thinking skills, oxygen deprived brain.
Parkinson’s Dementia: Declining of thinking and reasoning, that can happen within one year of diagnosis.
Frontotemporal dementia: Effects personality, language, and movement.
There are three stages of Alzheimer’s, Early, middle, late, or beginning, middle, end.
In the beginning, people are aware of their short term memory loss. They are frustrated, this is hard to watch as a caregiver. They commonly lose things, forget the name of something, can’t find the right word to say, have trouble organizing and planning, having trouble managing finances. If you have a little trouble like this, because you are busy and tired from a demanding life, this is normal you are not getting dementia! This happens all the time, not just when you have an extremely busy demanding life like I do. When you have beginning stage you cannot handle an extremely busy life.
In the middle stage cannot remember where you live, your phone number, may get lost. This is when it gets scary for loved ones and caregivers. Personality changes. Not oriented with what day it is. May become incontinent , cannot control bowel or bladder.
End or late stage: Total dependence on caregiver. Not oriented in time in place. Cannot remember even what happened 5 minutes ago. Highly susceptible to getting sick and infections. Can just forget everything and not know who their family members are.
There are also 7 stages, but I don’t have time to get into this.
All in all this is a very devastating disease. It is like losing your loved one with you loved one still there. It is hard to connect with them. They know you are there, do not lose hope. The brain deterioration with this disease and what happens due to this disease, is so sad. The person that you once knew is almost gone.
If you can or feel led donate today: http://act.alz.org/site/TR?fr_id=14343&pg=personal&px=12281156
Let’s end it now, I would love to see a cure, and not have to see the devastation of this disease during my career or in my family!