Alzheimers - What a Bitch
What horrific disease Alzheimers is. I'm not sure if there is a more cruel disease out there. I've had to learn to deal with it in a very personal way.....much more personal than I would have ever hoped. My mom has Alzheimers.
She was diagnosed about 5 years ago at the age 74. It started out with my mom driving home from the grocery store one day, like she had done 1000s of times before, and then all of a sudden looking around and had no idea where she was. She had inexplicably went the wrong way and traveled a good10 minutes without even realizing it. She had no idea what had happened. She made her way back home, and while she didn't make a big deal about it, I know it frightened her. I think she immediately instinctual thought, "alzheimers". Her former job as a social worker put her in contact with elderly folks in nursing homes and many times they had alzheimers. I know she hated the disease. I remember many conversations with her where she said she could not think of a worse thing to happen to a person. So, I think after her driving episode, the possibility had occurred to her.
Everyone thought it a good idea for her to go get a check up. None of us kids though, ever even considered the possibility. Doctors cannot directly diagnose Alzheimers. They basically have to rule out everything else, and then they are left with alzheimers. And this is what happened with my mom.
When I was told, I was floored. I couldn't even comprehend the idea. My mom had alzheimers?? My mom....one of the most mentally and physically active people I knew had alzheimers?? I was crushed. I could do nothing but cry, because all I could think about was how horrified my mom had to be hearing this news. Literally, her worst fear had come to pass. She put on a brave face, but, my heart just sank everytime I thought about her lying in bed at night by herself and thinking about this and I would imagine spending many nights crying herself to sleep.
Doctor told us, she probably had anywhere from 2-5 good years left but, even the good years were going to be marked with a non-stop decline. I prayed for the long end of his diagnosis. I prayed he was wrong completely. My mom did relatively well for the next 18 months or so. The first signs of decline was in her talking. She would just be unable to come up with the word she was thinking of. She knew what she wanted to say, but just couldn't say the word. For example, she would want to say "snow" and after trying her best would end up just saying "that white stuff that comes down". We had to move her next door to my sister into this really nice townhome, which I'm so grateful she got to appreciate for a good year. We were able to have 2 really great family Christmas' while she was still in good shape, but then the decline started to happen more rapidly.
Her speech became more and more a struggle for her, and she was becoming very forgetful. And you would not believe the effects that has on a person. It starts to cause all kinds of side-effects, mainly paranoia. My mom was convinced my sister, who lived next door (literally 20 feet from each other), just did not care about her anymore. She would call up us other kids and tell us all these things about Patty (my sis) and unfortunately, not fully understanding of the disease, would believe my mom and blame my sis for being so thoughtless to our mom. Mom would say days would go by with her never seeing Patty. Not so much as a "hi, how you doing". But, in reality, Patty was seeing her everyday, checking up on her, spending time with her. But, my mom just would not remember. She would also lose things. And that manifested into someone stealing stuff from her. Again, another strange awful effect of this disease.
The best way to say what happens to a person with alzheimers is that their world just becomes smaller and smaller and smaller. My mom used to be up on everything. She got such a kick out of politics (liberal to the core) and we could talk for hours about politics. But, her world just started getting smaller. Soon the bigger world picture was not something she could comprehend. Then slowly but surely, even her family that she did not see each and every day got to be too much for her to comprehend. And eventually, even those in the family she did see each day became too much for her to comprehend. Today, her world consists of the 8th floor of a nursing home for alzheimers patients. That is her entire world. She remembers no one in the family. She just exists in the present moment and is reduced to the most basic of emotions and needs. She likes to eat, she likes to sleep, she likes to walk around. The place she is at keeps her relatively happy and comfortable. That is all we can ask for at this point.
The last time I saw her was 2 Christmas ago. I went and visited her in the nursing home. It was the first time I'd seen her in total full blown alzheimers. She did not know who I was. I was absolutely crushed. I still have not recovered, from that blow. I did everything I could not to burst out crying while there. I stayed a while, and talked with her and tried to get a feel of how she was and then after I said my goodbyes I barely got out of the hospital before I just completely lost it and started sobbing uncontrollably. I have never felt so heart-broken in all my life. To this day, I still have a hard time talking about my mom. The sadness is just so heavy. I've reached a point where I understand life goes on, and I have to also, but, it's not always easy.
I never knew how much I loved mom. She was my best friend, and I never even realized it. She was a remarkably strong independent person. Raised 4 kids by herself. How she did it on the money she made, I'll never know. But, she did it. And looking at the 4 of us kids, she did a pretty good job. The admiration I have for her is unbelievable. I just wish I realized this earlier and could have told her so. I think she knew though. I was the youngest of the 4 and being a bum for most of my 20's, I lived at home with her until I was 30. We became really good friends when I was in my 20s and we learned alot about each other. Looking back, I'm so glad I was a bum, so I was able to spend the time I did with her.
I do feel we let her down in the end. I honestly feel she would have wanted us to help her put an end to her life than to let this happen to her. I know her. Not in a million years would she had wanted to let this happen. I think we had a small window of opportunity to help her, and none of us kids were strong enough to broach the subject. I too think my mom was not strong enough to broach the subject. To this day, I have this horrible feeling that we let her down.
Today, I have a heavy heart because I cannot bring myself to go see her. I just dont know if I could take it, and I don't know what good it would do anyways. She does not know me and as soon as I left you would forget me again.
All I can say is, I would not wish this on anyone. Our family was not prepared and the family paid a heavy price. Our once very close family is no longer. A huge fracture in the family happened over my mom's illness and is not likely to be fixed. Another tragic consequence. If you have not experience this, you just don't understand what this disease does, not only to the person, but to the family. The toll is tremendous and if you didn't experience, you just would not be able to understand why and how this happens. But, it does.
The doc told us the average life span of a person after being diagnosed with alzheimers is about 10 years. So, my mom is now 5 years into her journey into darkness, and probably has about that much time left before the ravages of this disease take her physically too.
I miss you mom, everyday. I love you. Thank you for everything you ever did for me. I will never forget you.