When It All Began

I'm sure it's impossible to pinpoint when dementia "starts" for a person. I think most people start counting from a particular event or situation which smacks the caregiver or family in the face that says "something is REALLY wrong here" and that the issues are more than simply just aging. And that event for me was the death of my grandpa, Charles Mitchell, on March 25, 2007. He had passed away while my parents were in Florida. And my Mom refused to come home to attend the funeral.

At the time, I was not aware of all the factors that had gone into her decision not to go. I just thought that it was the most ridiculous thing ever that she would not make the effort to come back. It made no sense to me, and I told her so. It made no sense to her brothers and sisters either, who were as confused as I was, and a couple of them told me so. I tried to plead with my Mom to come, and she just shut me down with excuses so ridiculous it was comical. "Daddy has to golf that day," she said. "Daddy has to wallpaper the bedroom." "We have to go to Costco." "I am too old to make such a long trip." "We can't afford the airfare." I was expecting "The dog ate my homework" next. But never once did she mention the "real" reason she had decided not to come, which I didn't even find out until a few weeks ago.

Truth is, my grandpa had dementia and pretty much spent his final year wasting away in misery in a nursing home. He became a very bitter, angry man late in his illness, which is a side of him I heard about but never experienced first hand. I'm a little embarrassed to admit that late in his illness (and my grandma's too) I just got so scared to see him that way, so scared that I wimped out of going to see them. Part of me didn't want to believe the horrible stories I was hearing about things he'd say to his children, and how poorly he treated them. Suspicions, accusations, just horrible, horrible things. It scared the crap out of me, because the only "Poppy" I knew (and cared to remember) was the one who would lovingly wrestle me into his lap as a kid and ask me for a "squeezer" (which was his word for a big hug).

My Mom would often tell me stories of all the horrible things she would encounter when she went to visit him and my Grandma. But she never said anything about it bothering her to me. She seemed to be well aware that it was the disease talking, and didn't seem to be taking anything too personally. I was wrong.

A few weeks ago in a chat with my Dad, he admitted to me that she didn't come back for the funeral because she was so angry with him for saying all of those horrible things during his illness. She took it all personally, and resented him, big time. She had never mentioned this in her laundry list of excuses. And had she, I think I might have at least understood a little better. It's easy to say that now, of course.

The funeral itself was one of the most difficult experiences of my life. Not because I was overwhelmingly close with my Grandpa (I loved him dearly though), but because I was so humiliated that my Mom, the oldest of the 7 children, was not there for her mother, and for her brothers and sisters. My brother and I went as overboard as we could to compensate. I was there for the entire visitation, brought tons of food, tried to do anything I could think of to show my Mom's family that even though my Mom didn't think this was important, I did. It was excrutiating to have old friends, neighbors, and distant relatives come up to me and ask "Where's Linda?" It was hard to respond with any of the lame excuses she had given me. It was all the more embarrassing because my 3 cousins from Florida ALL made the trip, regardless of the fact that it must have been a tremendous financial burden to them.

I know now that my Mom was grieving, just handling it in a much different way, and was (mentally) ill while she was trying to handle it. This event was the first big red flag that made us (me and some of our family members) take note and realize that something was wrong with Linda. Something MORE than just aging. And once again, I think deep down somewhere in that head of hers SHE realized that something was going wrong. How scary it must have been and must still be. With every passing month, week, day after that point it was clear she was headed down the same path as her parents. Even as she continues to this day to deny it (and deny her parents ever had any dementia problems at all), I'll bet somewhere in there she knows what is happening and is scared to death.

The World's Crookedest Street

For my Mom, memory lane is like the world's crookedest street. Or at least that's what it seemed like after I spent the day with her last Sunday. The plan for the day was to sift through old photos together, so that I could select my favorites for the scrapbooks that I am going to create about my Mom's life. She was excited to do that together, and I could tell she loved the attention, but it seemed weird that she never asked "why are you doing this?" It's like somewhere there in her brain she knows what is happening to her, but she continues to act as if all is well. If someone all of a sudden started gathering up pictures of me, I'd be a little suspicious.

The plan was for my husband and I to go over there for the day, and Mom and I were going to sift through photos while my Dad had a chance to catch up on some emails and then he and Paul went to golf. The experience was pleasant enough, but there were a bunch of weird, off-the-wall things that happened that really made it a roller coaster for me. When I first sat down, my Mom grabbed a box containing photos of her high school years. This box had dozens of those individual senior photos of a bunch of friends. Mom sifted through them and remembered explicit details about each of these people. She particularly focused on old boyfriends, and repeated the same stories about these guys over and over. I was fascinated that she remembered so much about those people so long ago. I began to think "Geeze, maybe her memory is not as bad as we all think it is".

It was really weird. I would dig to find unusual photos and quiz her on them. Where was this house, Mom? Which bedroom was this? Who is this person? In most cases she got all the answers right. But what was really bizarre is that when it got to a certain point in time, she pretty much was clueless. We came across a picture of Bob, my son Alex's father, who died in 1999. She looked at it and said "He's such a nice guy, Sue, where is he living now?" Uhhhhh.... I was stumped. It was hard to bit my tongue, so I didn't. "Mom," I said, "Uhhhh... he's "living" in Heaven. He died in a car crash in 1999." She looked at me quizzically, said "Really, oh that's too bad." and then went on talking about something else. It was hard not to be mortified.

It was almost like after some time in the mid 1990s, the information just got all mixed up. I pulled out a family photo taken at a cookout. This was a huge group picture of (most of) her entire family (she comes from a family of 7 kids) with their kids and respective spouses, her parents, children and grandchildren. She looked all confused-like at the picture then got disgusted and tossed it aside commenting "I don't know why we would bother taking a family photo with a bunch of strangers in it." I laughed, it was quite funny actually, because there were several of us (my brother and I included) pictured with EX-spouses who were no longer in the picture. I pointed out that at the time, these people WERE family. She started to argue and say she didn't even know them. The funny thing was she would point to them one by one and say "He's the biggest jerk" or "I hate her". So while claiming to not know these "strangers", somewhere in the depths of her brain she "knew" how she was "supposed" to feel. Even while claiming to not know these people, she would remember little gossipy details about a "stranger" but not even remember their name. So weird.

Another weird thing was with pictures of her parents. This is where I got really sad. Throughout my entire life, I remember my Mom having a very positive relationship with her parents. She would see them often, help them out financially here and there, and talk with them regularly on the phone. Very occasionally would I hear any complaints, but they were all just the typical griping you hear anyone say about their parents. Once her parents became ill (early 2000s) she gradually became more and more negative about her parents. More on that story in the next post (it's worthy of it's own post). Funny thing is, her parents suffered from the very same diseases (her Dad from dementia, Mom from Alzheimer's). Anyway, as we would come across the pictures of them (from any point in time), she would look at them with disgust, make a snide comment, and not talk about them at all. So sad.

At one point I made an observation that she was wearing the same dress in 3 different prom pictures, all in different years with different dates. She snarled about it that it was all because her Mom was so selfish she wouldn't ever buy her a new dress, she made her wear the same dress so that she would buy a new dress for herself. The comment was dripping in resentment and anger. I know my Grandma had a taste for nice clothes and all, but geeze, what was the big deal? I had seen the pictures before, but never had she been so mean about it.

When we sat at dinner later she was really struggling to read her menu and choose something. She knew what she wanted, but couldn't locate it on the menu, so ordered the easiest thing to find, which we all knew at the table was something she didn't like. Luckily we all could see she was struggling and not wanting to draw attention to the fact that she was confused, so we clarified her order with her verbally, that she indeed wanted the Filet, but she insisted on calling it the "Triple Combo", which was the Filet with two other items that she didn't like at all. I think it was the only paragraph she could find the word "Filet" in, so she insisted on ordering it.

Last week I had the Geek Squad out to fix my computer. The diagnosis ended up being "bad sectors". Well that, and there was way too much stuff on my computer! The technician easily fixed my bad sectors with a repair disk in a matter of minutes. He left, and all was well with my computer. I had been very stressed about the potential of losing data, and stressed that several "vital" software programs were not working for me. After awhile it kicked in that my Mom has "bad sectors" too. But her bad sectors can't be repaired, ever. What a helpless feeling. Can't call the Geek Squad to fix THIS problem. Can't "reinstall Windows" either. We're just stuck with what we've got, and we have to deal with it, and work around it, as her "system" continues to fail and more bad sectors develop to the point where the system doesn't work at all.

Argh. I am SO not ready for this.

Death in Slow Motion

After blogging for a few years about things I enjoy, my family adventures, marathon running and exercise, financial security, and my goofy Great Dane Nova, I have found that I need to blog about another subject that unfortunately is NOT enjoyable. This blog will be focused on discussing my 66-year-old mother's decent into Alzheimer's and dementia. I can't think of anything better to call it now other than "Lost on Memory Lane".

It's hard to know where to start, because so much has happened in the last few years to get us to the point we are at now. Rather than backtracking and starting from the beginning here, I will just talk about where we are at now, today, and then backtrack little by little over the course of future posts. I thought I would start with a picture of Mom and Dad, taken last weekend when my family came to see me run my first marathon:

My mom, Linda, is 66 years old right now, and from what I can remember, has been exhibiting signs of memory loss for a few years. At this point in time, all the information I've read leads me to believe that she is about a Stage 4, going on Stage 5. It's hard to place when it all began, but it all became noticeable a few years ago when both of my grandparents (mom's parents) battled Alzheimer's and dementia for years, both in their home and ultimately in a nursing home. Mom's deterioration became REALLY noticeable last fall, and since then, it has just been getting worse and worse. Trouble is, she was "kind of" diagnosed by a Doctor she didn't know (she has a hard time sticking with Doctors), but as of yet there is no official diagnosis. Today she is meeting with a second neurologist.

But anyway, it's not like we have any question about the diagnosis, we are more trying to figure out what to do, and how to do it. See, the most troubling thing about Mom's situation is that she will not admit there is a single thing wrong with her. She is in such denial it is comical. And the fact that she won't cooperate with my Dad's effort do help her (or she fights him the whole way) make it so much harder.

I have heard Alzheimers and Dementia referred to as "death in slow motion". That is so true. We've only just begun this awful journey, and that is soooooo depressing. There is so much more grief and loss ahead. I've done a lot of thinking about this long goodbye that is ahead. Of course I wish that this did not happen to her, geeze she's only in her 60s, and her parents were in their 80s when they had to deal with this. That in itself is so scary. This has really got to be the worst way for a loved one to go. Well, the worst way for a loved one to go. That's one of the blessings, is that people who suffer from this are generally feeling good about their life, fulfilled and happy. Well, at least until the later stages. The biggest toll is on the family, the caregivers.

In this case, the caregiver is my dad, John. It is so heartbreaking to see my vibrant, active, intelligent Dad in this role, because it is so frustrating and stressful for him. My entire life he has been a role model to me. No where else on this earth is there a man who is as committed and with as much integrity as my Dad. He spent nearly 30 years in the work world, climbing the corporate ladder, all the way being honest, trustworthy, and an incredibly hard worker, devoted to his family. His success brought him a wonderful, comfortable life, with a gorgeous home, a beachfront condo in Florida, financial security, enjoyable hobbies and interests, all that stuff. Back when he retired I'll bet he had visions of a wonderful life in retirement. I can't imagine he ever thought that THIS would be his retirement.

Nowadays, his life is consumed with caring for my Mom. It's taken a toll on his health (he has a lot of stomach issues). The most stressful aspect for him is that he just can't seem to keep her happy. My Dad likes peace, and I think nothing eats away at him more than for him to know of think that someone is not happy with him, or disappointed in him. My Mom dishes this out 24-7, and it is just eating him alive. I totally understand how he feels, I have inherited his sensitive side, and like him, very often tend to take things WAY too personally.

One blessing in all of this thus far (I try hard to look for those), is that my relationship with my Dad has grown immensely. I have always had a great relationship with him throughout my life, but never as a close confidant, which is what I have become now. He is watching his best friend of nearly 50 YEARS fade away, day by day. She is/was truly his best friend. He has many acquaintances and friends, but she was his only confidant all those years. It's taking him some time to begin to trust others and confide in them. I'm just glad that I can be there to help fill the void this disease is leaving.

I am grieving very much like my Dad too, because my Mom was pretty much my closest female confidant my entire life. I have always been one to shy away from close female relationships (don't know why), and generally my closest confidant was always whatever man I happened to be dating or married to at the time. But my Mom was always my "gal pal", although in terms of interests and lifestyle we had very little in common. It's hard to not be able to pick up the phone and talk to her about something that upset me that day. Oftentimes now, I just keep it inside, or journal about it, and very occasionally try to talk to someone about it. But I just can't seem to find someone who would listen to me quite the way she would.