Help End Alzheimer’s, the sooner the better.

Help End Alzheimer’s, the sooner the better.

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!

THANK YOU!

29 thoughts on “Help End Alzheimer’s, the sooner the better.

      1. All these forms of memory issues are difficult to witness I will say the amount of support in terms of coping skills and hints/tips available on dealing with it are awesome.

  1. This is terrible to learn about! I can’t even fathom how difficult it must be for you as a care giver. Too hard to watch. Alzheimer’s is a thief! Stealing precious memories and a part of oneself. 😔

  2. So sorry to hear about your grandma! That must have been horrible. This is a really informative post. Thank you for sharing and bringing awareness!

    Lauren – bournemouthgirl

  3. Alzheimer’s is so sad. My grandparents had it, and I visited them as often as I could and tried to help ease the burden on my family members who were their full-time caregivers. Now my husband’s grandmother is showing early signs, and it’s scary for us because I don’t know what we’re going to do to care for her. She lives on her own, doesn’t want to move closer to us, and we can’t afford to move to where she is.

  4. Thank you for writing about this and raising awareness. My beloved great aunt had dementia and it was hard to see her struggle and change as it progressed. We would often have to go out looking for her as she would wander off even though we out things in place to stop her. It was difficult to see the changes in her. It’s so important we make people aware of what to look for and how to treat those living with it with respect and kindness.

  5. My uncle had Alzheimer’s and it took away everything he was. I think the article you have written is brilliant at drawing attention to this horrendous disease and I’m sorry for the loss you have gone through.

  6. I’ve taken cared of patients with dementia before and It was really heartbreaking to see them deteriorate mentally and physically. This is a very informative post that helps raise awareness of this devastating disease. Thank you for sharing your story.

  7. Such an informative post. I didn’t realise there were so many forms of dementia, nor exactly what Alzheimer’s fully entailed. Thank you for sharing this, and your personal experience.

  8. My grandmother died of Alzheimer’s in 1996. Shortly before she died I remember taking her down to sit by the river in her wheelchair. We all used to talk to her although she hadn’t said a word for close to a couple of years. Sometimes we felt stupid doing so, as we were sure she was long gone. Her expression was vacant and she simply stared into space. On this day, however, she seemed to be distressed and was trying to tell us something. It was then that we noticed a girl of about three playing alone by the bank of the river and in considerable danger of falling in. Her parents, otherwise occupied, had not noticed that she had wandered off. My dad shouted to them and the father went over to scoop her up, at which point gran relaxed back into her former state. Since then, I have often wondered whether there really is some sort of cerebral activity, even in the late stages of Alzheimer’s, of which we are not aware.

  9. This is a really important post to raise awareness about this disease. I am really sorry about your loss and I hope that a cure is found soon. It is really sad to have a loved one suffering from this and don’t be able to remember.
    Thank you for this post!

  10. This is such a good, informative post! I really appreciate you raising awareness, it’s so important to do so. It’s a heartbreaking disease, it really is. Thank you so much for sharing! Xo

    Elle – ellegracedeveson.com

  11. Wouldn’t it be lovely not to dementia in this world? My dear Mother – in -law passed away a few years ago with likely a vascular dementia and so know first hand how devastating this disease really is. Thank you for sharing this information.

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