As a nurse with many , many years of experience in long term care I have taken care of a plethora of individuals with all types of dementia ( you know there are several, right? Alzheimer's Dementia is only one type) It isn't easy taking care of some dementia patients. It's a horrible and awful disease that steals precious memories and dignity from elderly people. You can't prevent it and there is no cure. In end stages they are like adult babies, having to be fed and wear diapers. They can't walk or talk. They become merely a shell of their former self.
Usually this is where I meet the patient, when they are in the end stages and require nursing care 24 hrs a day. Many times over the years I wonder why those patient's families don't visit very often. I would say to my coworkers, " How awful, her daughter lives in this town and she doesn't ever come see her mom. It's horrible." Or when they are dying, " What, I can't believe no family flew across the country to sit with their dying dad, how cruel"
Sometimes it takes a tragedy to make a person really understand.
I love my grandmother, I shall refer to her as " Mamaw" for the rest of this blog post. Mamaw was a very intelligent, strong woman in her day. She was loving, wise, fair, kind and wonderful. She made the best roast and mashed potatoes ever! And I would request it as my birthday meal every year.
When my family were going through rough times I knew I could rely on her to be a voice of logic and reason and I also could count on a hug when I needed it. I owe her so much.
When I was 21 and climbing out of the depths of a depression and leaving an emotionally abusive relationship, Mamaw was my rock. She let me live in her house for three years while I got it together and went to nursing school. And those were a wonderful few years. I was so busy with work, school, and social life that I didn't spend as much quality time with her as I could have but we did have some great times. She inspired me in many ways and I always longed to be like her. I love her so much it hurts. I miss her.
You see, about everything in that paragraph was written in past tense. But she is still alive. Lewy Body Dementia has robbed her of her. She isn't herself anymore. She looks like my Mamaw but she is frail, sad, and unsure. She is confused and illogical. The wisdom in her eyes is long gone. I feel like my 87 year old Mamaw is alive, but not living anymore, simply existing.
I used to take the boys to visit every other week but after her dementia set in, it became difficult. For me. It's so hard to see her like that.
It makes me sad and angry at God. She took care of my grandfather through his Alzheimer's battle many years ago, how could God do this to her? Why couldn't she be spared? Why her? I can't stand it.
So now I am the horrible family that visits infrequently because it's too difficult FOR ME. And I hate that I am so selfish. I have gone through the stages of grieving and haven't been able to get to the acceptance part yet, I'm stuck in the depression part. I am grieving the loss of my Mamaw, who is still on this planet, but it's not her anymore. I love her so much.
So now, instead of looking in from the outside. I am on the inside, experiencing the dementia with my Mamaw and the rest of my family. Now I see how a family can accept the loss of a loved one before they pass away. Because, by the time death arrives, the dementia patient is long gone from the shell that is their body. And the family has accepted that. It hurts when someone you love doesn't know who you are anymore. It hurts a lot.
Mamaw still knows me but I don't know for how long.
I hate dementia, I hate it so much.
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