Shining moments and Alzheimer’s World….

 

Today I watched as my mom blanked out, again. “Alzheimer’s World” is a term I am coming to grips with. She calls commercials, “little movies.” She loves watching the news on OAN (One America News), because you get the entire world in one hour and then it repeats. She is shocked every time she watches some of the news, even though it is the 2nd or 3rd round today. She only drinks coffee in the morning (but then grabs a bowl of cereal when she sees us eating) and watches the news. Over and over. And as I showed her a cute kitten video while the news was cycling through, she just turned her head away with a blank look on her face, completely confused at what she had seen. It was kittens playing. It was not the news. She had entered “Alzheimer’s World” and our moment of clarity was gone.

I have come to realize, through reading some great material in a class I am taking online, that when someone has the attention span of 5 minutes, expecting more from them is a waste of energy and emotion. We went to breakfast on Sunday and she sat there, looking blank. She did enjoy watching her 5-year-old great-grandson color, but she did not interact too much. She forgot how to eat French Toast and when I offered to help her, she snapped at me. But I know it was because she realized she was confused. So I did more with less and spoke with my kids, allowing her to eat French Toast like regular toast. Watching movies or TV programs does not resonate – she cannot follow a storyline. She will watch golf or football, because she says sports is just what it is and you don’t have to figure it out. She does enjoy “The Chew” because I think they laugh a lot and are noisy. She loves Steve Harvey and especially loves “Family Feud,” so we laugh together at that. I enjoy those short moments of joy with her. But, those moments of understanding are spreading further and further apart, and it seems to be happening so much more quickly these days.

These are my mom’s hands, This is how she holds them. All day long. She fiddles with her fingers and if she is stressed out, they clang against each other. Her fingers were going nuts on Sunday, as the grandkids played in front of her. It was just too much stimulation. As she enters into Alzheimer’s World more and more, she loses her hold on those of us around her. Her connection gets more and more frayed. My mom is highly verbal. But it is just recitation that is on constant rewind and replay. She can fool some people, who think she is pretty good for having Alzheimer’s, but those of us close to her are in shock she lived alone until August. I still don’t know how she did it, other than tons of notes everywhere and rote repetition of each day. But I also know her clothes were not clean, and personal hygiene is hard for her. The fact that she can still use a mascara wand and eyebrow pencil, and her thin, tiny eyeliner brush, amazes me (I don’t even use them well!). But it takes 2+ hours to do make-up and sometimes she just gives up. There is usually liquid make up all over the bathroom and mascara and eyeliner everywhere when she walks out of it. Sometimes we do our nails, just to connect. I am learning to wear polish just to do something together with her. She loves painting her fingernails!

I saw a new decline yesterday. She could not eat spaghetti, calling it “dinner by the yard.” She complained she could not twirl that thing (her fork) to get the noodles onto it, nor could she manage to eat them. It made me sad (especially since she did not call it a fork). She got all snotty with her comments, but it was to cover her frustration. So I cut her food into little bites and she completed her meal, commenting on how good it was, completely forgetting her struggle with the fork. I am noticing more and more her inability to do common things, and my heart hurts for her. And one of her major strident things is to always match. She will not use a black purse with a tan outfit; she will not wear black trouser socks with any color of pant other than black. Thanks be to God I had tan trouser socks one day recently (they are now hers) because just changing her sock color changed our entire process and her mood became joyous…just because her socks matched. It’s another way of doing more with less. (I’ll talk about that below). Changing sock color allowed us to process leaving the house with happiness instead of anger. Win-win.

So how do we do this every day? For one thing, I am learning, sometimes with a seeming 2×4 up the side of my head, to do more with less. Less communication and less worry. If we have 1-2 moments in her 5 minute attention span, I have a little success. So our days are down to 5-minute spans. And we can move on. The kids got a big hail storm last night and “face-timed” us on their phone. So I walked outside to see if we had the hail. Mom saw them on the phone and followed me. She wanted to close the door. I explained I was looking at the rain to see if we got hail, just like the kids were getting on the phone. She had no idea we had just been on the phone with the kids, seeing the hail, and wanted to close the door. Doing more with less, I continued to watch the rain and chat with the kids, as she closed the door on me and went to sit back down on the couch.

Doing more with less means taking just a small thing and learning that it is the crowning moment of your day, and not worrying about the entire day. Each day is made of moments. It’s the moments we have to focus on, and cling to the good ones, allowing the others to fade away. So today, I will watch her go to Alzheimer’s World and not worry about those moments. I will cling, however, to those moments when she looks at me and I know she really sees me and is connected to me.

I used to read – a lot. But not much anymore. Nine o-clock rolls around at night and I can barely stand up. I have reached the end of my rope, and I am exhausted. I walk around, doing stupid things like taking vitamins and giving the cat her water, making sure mom is getting ready for bed, checking for locked doors, getting the dog settled and myself ready for sleep. Read a book at that point? I can barely make it under the covers.Hubby and I chat a little, and ironically it is me who goes right to sleep; a few months ago I kept him awake while I read late into the night. Yesterday morning I realized how tired I was (and overwhelmed by taking care of everyone else and forgetting time for me) when I arrived at the restaurant, to meet our kids for breakfast on a crazy Sunday morning, wearing my slippers. Yeah. It is like that every day. But there are those shining moments. Those I will cling to.

 

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“…I don’t have to worry about you anymore…”

With Facebook, if you are not familiar with it, you are given prompts each day as you log on to your account, to view posts from that same date in years gone by. They will show you things you have posted on that same date, each year you have had a Facebook account. It is kind of cool. And today I was reminded of some blog posts I had put on Facebook. One was from just two years ago and it was about me and my dad, communicating on a different level. I remarked that we were communicating as peers, and not in that authoritative/subordinate thing we get into with parents. And I was rejoicing. Because it was so very different.

I actually remember dancing with my dad like this. We were on vacation, I think we were up in Northern California, near to Lake Shasta. We were staying at this lodge/hotel place and each evening, we got fancy for dinner (well, it was the 1950s and that is how you did dinner in those days. Fast food had not been invented, yet. I have a story about that, too!). And the orchestra played that wonderful song, “Thank Heaven for Little Girls” by Maurice Chevalier, and my dad asked me to dance with him. It makes me cry to think about now. What a precious memory. I believe we have photos somewhere from that vacation. My dad is the same number of years older than me, that I am from my oldest son. And so I measure things with him, to my relationship with my son. I can clearly recall my son and I at this stage, too. Soon, he will be at the same place with his daughter. It’s one of those “circle of life” moments where disparate things gel into a linear relationship and you can clearly see how connected they are.

Ahhh…the 1970s. Gotta love those pants. Yeah; that happened. And something happened with me and my dad. We argued – a lot. I spent a lot of my teen years on restriction for some broken rule or another. I totally get that phase. I cut my long, long straight blonde hair into a Dorothy Hamill haircut. And entered college. When your world explodes because your knowledge is exploding, relationships at home explode. It seems like pretty much all of my friends had explosions here and there with their parents. My parents were “too old school” and too “out of touch,” and being British, just weird. And funnily enough my youngest son recently told me that he and his brothers all think my husband and I are “old school parents.” I sort of took that as a compliment. Ha-Ha. I don’t think that was the reaction he had expected!

Me and my Dorothy Hamill wedge haircut exploded into the world. And my dad was often left out, shaking his head at my choices and decisions. Somehow, in amongst all that exploding that was going on, I kept finding myself at Church in some form or another. I went to the Mormon Church, I explored Judaism, I loved Zoroastrianism. (Zoroastrianism is one of the world’s oldest monotheistic religions. It was founded by the Prophet Zoroaster in ancient Iran approximately 3500 years ago). I drove my parents nuts when I left my law/medical leaning education for Anthropology. They stopped supporting that exploration because they could not see how it would do anything for a career for me. I compromised by majoring in Forensic Anthropology and Physiology, with a minor in Biblical Archeology. That way, I was still in science (to make my dad happy) and yet I could study history in a concrete way. It made, and still does make, for interesting conversations. I can even recall arguing with my grandpa (my dad’s dad) about Scottish Rite Masonic influences in society, the evils of smoking, and his problem with unions. And my dad always stayed out of those! Ha-Ha! Smart guy! I did cause some concern when I entered the Catholic Church in my late 20s. I think he still has doubts about where my faith is. But regardless of where I stand or where he stands, I still share with him my faith. I share the Psalms with him, and many of the Scriptures that bring me peace, hoping he can grab onto some of that, too. I had sent him an email a few weeks ago, with all these quotes from the Scriptures for him. I thought if he printed it out, he could look at it and find comfort. I did not realize then, how poorly his health had become and that he no longer uses his computer, or even reads. So now, I share verbally with him, when I can.

These day, however, conversations with my dad are never predictable. He has Parkinson’s Dementia, or Lewy Body Dementia, or Parkinson’s with Lewy Body Disease. Whatever way you slice it, my dad is fading away. And very quickly. In many LBD (Lewy Body Disease) patients, their ability to process information and be cognizant in a conversation becomes greatly hampered, until there is no true conversing going on. They suffer hallucinations and become easily paranoid. They can also become increasingly angry and violent. And because of all of that, I am mourning my dad already. He is still with us, but his decline is becoming so very rapid. He is 90 years old. And he has admitted during his lucid moments, that he is just tired. And it makes me sad. The man I danced with can barely walk with his walker. Sometimes there is humor in that, because he did fall last week and no one saw him laying in his driveway. He could not get up but happened to have his camera with him. So, being the creative guy he is, he laid there taking photos of ants and dirt and other bugs. (He loves Macro-photography). He remembered what had happened and related it to me, all the while laughing about it. It was one of our good conversations.

And today I am psyching up to give him a call. Because with this disease, we just don’t know how he will answer the phone. Last week he did not want to talk at all…he was in an angry phase. And a day before that, we were laughing at his walker episode in the driveway. And I have to prepare for those bad days. I pray for good ones, but I prepare for the bad ones. I have also come to realize that quality of life is truly a concern. With all the dementia styles in our extended family, I have come to see that quite often, if our loved ones knew how they were behaving, they would be mortified. And so I pray for them to find peace. To find calm. To find gentle. And to feel the love we have for them. And I find myself expecting the man in the photo below, whenever I speak to him. But I need to drill it into myself, that is not who answers the phone. Today, I am sad about that. Life is going on and moving past us. I recall a conversation between my dad and his dad. We were walking into a party to celebrate my grandparent’s 60th wedding anniversary. I was carrying my oldest son on my hip as a baby. My grandpa said to my dad, “Well, son, I guess you’re old enough now that I don’t have to worry about you anymore.” We all laughed as my dad said, “Gee, thanks, Dad. You do realize I am 60 years old, right?” And here I am, ready to chat to my 90 year old dad, and I am 60. There’s that “circle of life” thingy again…cue the music from the Lion King…I’m going to call my dad, now. Love you, Daddy. I do. Already missing you…and missing the “us” we didn’t get to have.