I have been slacking on my blog lately again. I like to try to keep my post in order and I got as far as this summer and got stuck. I really don't know what to write or how to write it about everything that has been going on.
As mentioned in post a couple years ago my mom was diagnosed with semantic dementia in 2011, just shy of her 50th birthday. My mom had been having memory problems and had been displaying some odd behaviors for a couple years at this point and we all thought it was attributed to a heart surgery she had in 2009. When she had her heart surgery my twin sister's family was on vacation with us in the Florida Keys. We were camping at Bahia Honda and it was hotter than a fresh turd at night. My mom had some internal bleeding and I believe after taking her out of the operating room they brought her back in. We checked in with my dad and the last update we had was they were bringing her back in so everyone went to bed. I couldn't sleep though so I keep pacing around the campground calling my dad over and over. After a few hours of no response, I think it was around 2 am at this point, I finally gave up and went to bed.
Not even two years later I was working as a contractor for FPL. I was at their office in West Palm Beach one morning because I thought I had an interview at the St. Lucie Nuclear Power Plant and this was the halfway point. However I was a day off and my interview was the next day. I remember that morning my mom was diagnosed with dementia. I knew absolutely nothing about it at the time except that people lose memory. I did some reading on it at work and learned life expectancy is 10 years from the start of onset, which was probably a few years prior. When I got home that night I released some mail ordered lady bugs in the yard and didn't say anything about my mom. I just wanted to walk around my yard and not talk about it. Natalie thought it was odd but that's just me.
A lot of stuff happened between then and now. Most of it is probably in my other posts. We moved to Arizona and shortly after my mom had no interest in the kids. Withing a year or so she started confusing me with my short, fat, Honduran brother in law. Another six months down the road and she had no clue who I was.
Well onto this summer. My twin and I were talking probably around late May and she said she doesn't expect my mom to make it through the year. The weird thing about this disease is my mom would progress through it quickly at times and then for a while nothing. So it was hard to gauge where she was at. For a while nothing new was happening. Then in early June my dad went into his room one morning and saw my mom laying down halfway in the closet. He thinks she got up in the middle of the night, fell, and just decided to stay there.
There were some other things that happened and in the next couple weeks and I thought things might turn really quick. We had plans to go up north for a weekend and check out Prescott but when I heard this I decided to get out to my parents house. I had a talk with the kids and let them know this might be the last time they see Grandma. I think Natalie thought I was being dramatic but I just had a feeling this was it and I was blunt about it. I think probably the same night we had that conversation Natalie decided to name the newest Alves baby Dean. It was a hilarious conversation. For ten minutes she kept saying Dean William Alves. Then she said, "Are you OK with that. Is it official? Can I post it". I said yeah that's cool, it's like both my parent's name. Apparently the name was completely random for Dean and she just realized that it was like Deana and William and I couldn't stop laughing.
When we got to my parent's house I knew immediately things were bad. I'm not there every day so the changes don't sneak up on me. My cousin was getting married in a couple weeks in CO and it was a big event with everyone in the family going. When I got to Riverside my sister and I talked and decided it would be best to not go to the wedding. Like I said, when you are there every day the changes sneak up on you, so my dad thought we were being dramatic and things could go on like this another six months or a year. I remember just sitting on the couch and looking at my mom. Her face was pale and swollen, she had a blank stare, and it was the worst I had seen her. I knew things just weren't right. I believe that was the same night as the poo incident. I really don't know how my dad handled these situations on his own. With three of us on containment and cleanup it took an hour to handle that incident. There was also an incident where my mom was walking around with her pants around her ankles completely unaware they had fallen. Just a couple weeks ago she would have at least caught on that her pants weren't up.
A couple days later the doctor came by for an in house visit. My dad was at work and barely missed him. We had been having problems with idiotic doctors that don't have a clue what they are talking about and just recently my mom had been denied hospice because they said she could live another two years. They clearly don't understand semantic dementia. Well at first I thought this was going to be more of the same. The doctor comes in and says it could be a couple months. But then he started talking to us, and actually listening! He admitted he had only seen one case of semantic dementia before and it was hard to gauge. After listening to everything we said he told us he agrees, cancel the trip to Colorado, my mom would only make it at most 2-3 weeks and if she doesn't start drinking then a week if she was lucky, or unlucky. At this point she was having kidney failure and he said if she doesn't start drinking she won't make it much more than a week to ten days.
We hung around for a couple more days and then had to return home so Natalie and I could attend some appointments. We left on a Sunday and the plan was to come back Wednesday night. When I left my mom was still walking around the house, and she was doing it a lot more than normal. It was her last burst of energy. Looking back it was probably because she was in pain and didn't know how to handle it. The day I left was the last day she would be walking. My dad got a hospital bed that night and I think the last time she got out of it was Monday around 2AM. By Tuesday night my mom had slipped into a coma. She woke briefly Wednesday morning before I was called and was staring at the corner of the wall before slipping back into a coma.
Wednesday morning I got a call and was told my mom wouldn't make it until I got back. Within an hour we had packed up the truck and were on the road. In just over 4.5 hours we were back at my dad's house. The next couple days were a blur. My mom was laying there with her family around her only rarely moving when she needed more medicine. Wednesday night everyone gathered around because we thought it was the end. At some point she opened her eyes and had the most horrifying look I could imagine. However nothing really changed. This went on for a couple days. We had people all over the house sleeping in chairs, on the floor, where ever they could. My mom got her nails painted as well as my dad to try to be funny, she got her makeup done, and this was probably the best she had looked in a long time. The swelling and paleness had gone and she almost looked like herself. At this point we all realized how strong my mom actually was. She was able to hang on until Saturday morning on July 29th around 6:40. I just happened to wake up around 6:10 as my sister was coming into the room that morning to get us. Everyone gathered around and after several false alarms we knew that this time was different. My mom was taking very shallow breaths 30 seconds apart at this time and there was no mistaking what was going on. Within 30 minutes of the family gathering my mom had taken her last breath.
I don't know how to describe my feelings at the time. Sadness but also relief. I had years to accept this and was hoping it wouldn't drag on and she wouldn't suffer. You think you are ready but never are. It is still weird when I go over to my dad's house expecting my mom to come out and bang on the front door asking "Who's that"?
My cousin's wedding was the following week. We had a chance to go but skipped out to stay with my dad. We had the funeral a week later when everyone was back from the wedding. My cousin that had just gotten married actually made it out to be with the family. You have to try to find the funny moments at a time like this and Zach delivered us a funny moment. As they were lowering my mom's casket Zach starting yelling "No, they're dropping Grandma". It was one of those times where you have to let out a laugh inside because it's not really appropriate for the moment.
So now it's 8 months later, to the day. My views on life have changed a lot over the last few years and I really feel like I was robbed here. For nearly a third of my life my mom had this disease. I have a really good memory and can remember events back to when my sister was born when 2 years 9 months old. However the first third of my life I have memories of events, not so much fine details about the events or people's personalities at the time. The second third of my life were the years when I was busy with my friends, school, trying to fit in, not really spending a whole lot of time focused on family. In between the second-third third of my life my mom and I were talking more. For a couple years before my mom got this disease I would call her often and talk to her. It makes me wonder how things would be today if she hadn't gotten this disease.
When I was in college I had an assignment and part of it was to select one of many places the instructor had picked out and give it a visit then report on it. I was at a time in my life where my high school friends had gone their way and I had gone my own. So I asked my mom to go with me. It's that awkward age when asking your parents to hang out with you is weird and somehow I was surprised at how thrilled my mom was to go with me. We went to the Museum of Tolerance in LA and for years she would talk about that day. Even after the dementia had moved into her life she would talk about it. Now that I am a parent I understand it. I wish I had more times like that with my mom. I had just gotten to the point in life where I would call on a regular basis and within a couple years that all ended because she couldn't follow a conversation. Just a few years before she was diagnosed Natalie and I would take vacations with my parents or show them around Florida and that was short lived.
Instead of having what I consider to be an ideal/normal life I now have one parent. That being said the one parent I have left is an amazing person. My parents had been together since they were teenagers living next to each other. My mom adored my dad. She would tell me that I am such a handsome guy but not as handsome as my dad. She always thought she had married well but didn't get to see him in his best days. No matter what, my dad was hell bent on keeping her out of a nursing home. The kind of stuff he did to keep her at home and comfortable would blow most people's minds. There was a lot of effort put into distracting her from doing things that were unsafe and containing someone who is bored out of their mind and doesn't know what to do with themselves. My dad went through a lot of sleepless nights and had to work the next day just to come home to whatever chaos was awaiting him. My mom got lucky because a lot of other people just throw their wives in a nursing home and find themselves a newer model.
Life seems kinda weird at times. I grew up with a big family family that got together often. My grandparents came over all the time and that is what I consider normal. My kids have one grandparent on each side of the family in their lives and a couple cousins. Definitely not what any of us were expecting but there's nothing you can do except make the best of a situation. Instead of having grandma over baking for the holidays my kids will have to settle with stories and imagine what it's like to actually have two grandparents together in the family.
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