Boy, this is going to be a tough one. It’s been on my mind a lot lately so I may as well get it out. Now that I’ve gotten my writing mojo back for a time there are a ton of other drafts sitting waiting to be completed, but those can wait a bit longer.
When people in your life start dying it’s normal to question your own mortality. When you’re young it rarely (or at least with me) crossed my mind that I, too would grow old, sick and die someday. Death seemed like a long long way off so why even worry about it? You hear about so and so who died after a long battle with cancer, or so and so who was killed in a car accident. Either way it starts to sink in that death is inevitable and eventually your time will come.
My grandma on my mom’s side passed away after suffering from dementia. My last memories of her were when she was in the nursing home crying without her teeth. The staff had misplaced them. She was thin and gaunt and didn’t look anything like the grandma I used to watch Benny Hill with. The worse she got the less I was taken to see her. Eventually I didn’t go at all, I think my mom wanted to make sure I remembered her in a more positive light, which I can say now I’m glad she did. Grandma passed away one day and I think my mom was by her side. I asked her what happened when she died and she said “She just let out one breath then that was all”.
My mom died from cancer back in 1998. She was a lifelong smoker and didn’t go to the doctor until it was too late. It started with lung cancer but had already spread to her brain. The doctor told her there were so many he stopped counting lesions after a while (what an awful thing to say!) Mom was sure she was going to fight it and in the early days of the internet she had heard of a new drug called Hydrazine sulfate on a news program. I remember her calling me and saying this would be her cure. “I’m going to be at your wedding someday! I’m going to hold my grandkids someday!” she would tell me. I looked up everything I could on that drug and silently prayed nightly that she was right. She endured radiation treatments to no avail. The cancer was too advanced. The last few months of her life she had distanced herself from me. Once again my mom was protecting me from the grim reality that she was dying. I didn’t know until years later that a hospital bed was brought to the house and that’s where she stayed until hospice took her. I also didn’t know that by then she had wasted away to less than 100lbs, was in diapers and mentally had reverted to a child.
Alzheimer’s took my father back in 2000. He used to be such an intelligent man. Worked for Skylab and then for Hughes Aircraft. He was always there for me when I needed help with my homework and some nights we would just sit and play chess. His disease progressed slowly and looking back on it all I could tell he was changing but I didn’t know exactly why. After he left my mom and married Donna the story around the house was that dad was manipulated into going with her because he had Alzheimer’s. Up until my stepmother recently came back into my life I thought that very same way as well. Now, after re-getting to know her I see what is the truth. My dad belonged with her. She took great care of him in his later years and only when he needed medical care did she reluctantly admit him to hospice. She would visit him often and more times than not she said he wouldn’t know who she was. Donna cared for my dad as long as she possibly could and for that I am so appreciative that he had her. Along with that, the other thing I’ve come to terms with is that my mom, even though I know she loved my dad, wouldn’t have been able to handle my dad in this condition. The last time I went to visit him was in 1998 (I think it was just after my mom passed away). My half brother and I drove out to Palm Springs to visit and he had no idea who we were. He kept asking me if I was family. Only once through the whole visit did I see a glint of recognition in his eyes and he started to cry “Oh, Stacey!! my princess! You’re here!!” He hugged me, we cried together then a few minutes later he was back to “Are you family? You’re so pretty!” It broke my heart seeing him that way, and I didn’t want to admit it at the time but Donna handled everything so well. She had moved them to a housing area that was completely fenced off. Dad had started to wander and if he did manage to get out of the house without Donna noticing the extra security was for his own good. Dad also fought prostate cancer as his Alzheimer’s progressed and came out of it cancer free. There was one incident in the hospital where he had managed to get out of his hospital bed, remove all his catheters (including his urinary one, ouch!!) and became combative with the hospital staff when they tried to get him back to his bed. Through all that I don’t think my mom could have handled it. Dealing with someone whose mind is going must be as equally draining physically as it is mentally and emotionally. The fact she did it as long as she did I applaud her for and am so thankful that I have this chance now to talk to her about things that I had always wanted to talk to her about. We’ve been given a second chance, and it feels good to tell her how much I appreciate her. My dad would be happy if he knew that her and I were talking I bet. I think now all he wanted all along was for me to accept her and support him being happy, but back then I just couldn’t. In my teenage mind all I saw was another woman stealing my father away and I couldn’t get past that. It’s amazing how your mindset changes after you experience life, hardships and the real world. Everyone deserves to be happy in their lives and I do believe in soulmates. Dad belonged with her, and that’s why things worked out the way they did.
With all of that being said now, this brings up “THE” subject that’s been weighing on my mind. Alzheimer’s is inherited which means I could have the gene that carries the disease. The fact that I may eventually start losing my memories and mind scares the shit out of me. I’m not going to lie. I am on quite a few medications for blood pressure, depression and an appetite suppressant and within the past few months I’ve noticed I have had a short term memory issue. It’s especially obvious at work when I can’t remember names not even a minute after someone tells me. I’ll walk into a room and forget why I was in there, or the most annoying thing is when I leave the room to go do something like get a drink of water but I get distracted en route and end up making numerous trips until I finally am able to focus on what I ORIGINALLY entered that room for. Overly sensitive? me? maybe… but look at the definition of Alzheimer’s.
What an awful death sentence to have. I can’t help but wonder if my dad knew what he had or if it just gradually drifted him away to the point where he didn’t care. I should ask Donna that.
How can you place that kind of burden on those that you love if you know you have the possibility of having that disease? In that way I am a lot like my mom. But on the same page, what will happen to me if I do get to the point of wandering, diapers and being combatant? It frightens me to tears and I don’t know how I should feel. Just like my mom who would have meant well with my dad but would not have been able to care for him properly… how can I place this kind of responsibility on my loved ones? I’m planning on meeting with a lawyer as soon as I do some more research so I can get my wishes documented for peace of mind. Right now as things are, I can’t in good faith subject anyone to the task of caring for me if I become an invalid. I’m lacking that sense of peace that comes with knowing everything is going to be alright.
Or does that come later? God I hope so.