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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The pain of memories…

So some days there are moments when your head just explodes. Sometimes it is a result of not enough caffeine (rare in my house) or not enough sleep (becoming the norm), and sometimes it is fall-out from interacting with others. For me, it has been a combination of moving (the physicality of it all, in addition to the emotional stress of relocating) and of trying to restore order and normalcy to our life habits, in addition to the preparation for my mom to come and live with us. So much change!!

My true pain came from a FaceTime session with my ailing mom. I realized how much this stupid disease is stealing from us all. She had no idea who my grandchildren were, nor did she truly understand what she was seeing. I took her on a tour of our new home, and showed her the room she would be living in, as well as her bathroom. Her comment was, “Well, at least I don’t have to go outside in the snow to go pee.” And we chuckled at it. (She has some odd, but common, misconceptions about life in the “Last Frontier”).  And then, as I walked from the bathroom, around a corner, to the living room, she asked me, “Are you ever going to move to a bigger house?” She was back to the house we just moved from, in her mind. It took about 3 minutes. And when my sister and I reminded her that she could not stay where she is, she said, “I’m not leaving here until I die.” And she was adamant about it. My sister and I exchanged looks, knowing this will be such a hard transition for her – for all of us, really.

But what prepares us for this process? Not much, really. I have not taken a course on caring for aging parents (I probably should look into that). I know my mom will probably become a toddler again, in some ways. It hurts my heart for her and her dignity. And dreams we all had of growing old and sharing our children and grandchildren. I am hoping that being around my grandchildren will energize her (or wear her out! Ha-Ha!).

And I am confused, as well, by all this information I keep seeing about why the preponderance of dementia and Alzheimer’s disease is so rampant in the USA – some link it to our diets, some to our sedentary life style, or processed foods, or the mercury in all those old vaccinations we were forced to get in the 40s and 50s and 60s. There are now so many dementia patients who are only in the their 40s! And it is not in Europe or elsewhere as pronounced as it is in America. I question standard medical practice and embrace much that is considered alternative. Why? Well, I grew up around medicine and I know they play at it. I have seen doctors create solutions on the fly, going against normal procedures on a whim, and having it work out better than what they would have achieved, had they not been creative. I have seen chemical mistakes turn into cures. My brother broke his hand – crushed his fingers – on a Saturday afternoon when he was, I believe, 14 or 15. He was one of the star running backs at our high school. Did my dad rush him to the local ER? No. He drove him about an hour away, after having called his friends (no cell phones in those days) who met him at the hospital where they all had faculties, and they experimented and came up with a casting system (it was replaced several times during the season) that would allow him to pass the referee’s requirements thereby keeping the season intact. Did my parents pay for that? They did not. Did my brother get excellent medical attention? You bet he did. But medicine and research of his incident was used as the payment. He was their guinea pig. My point? Science can be flexible. There are thousands of stories of doctors and staff using their families as guinea pigs. So I know there is stuff going on out there, for this horrid disease. I also KNOW that big pharma has a hand in all of this. Why cure Alzheimer’s and dementia when there is money to be made off the victims? Why cure many of these horrible diseases when healthy patients don’t need to see their doctor or take their medications as often or as long? When did medicine become pharmacy instead of prevention?? When did dietary and exercise advice become a prescription or a surgical procedure? When did doctors stop treating the person and just focus on the symptom?? It makes my head spin.

After my frustrating FaceTime with my mom, with my head exploding, I laid down on my bed. I diffused lavender essential oil on my dresser. I cuddled with my cat. I cried for my mom. I cried for my kids and grandchildren, too. I have a parent with Alzheimer’s, which means it is more likely I may get it, too. My dad has Parkinson’s Dementia. (I am not sure about my possibility for Parkinson’s, but it is out there). But it seems like the medication he is taking keeps him more with us than when he was first diagnosed. (Shocking result, to be honest. I seriously doubt our pharmaceutical world). He is having more Parkinson’s symptoms and less of the dementia, although he had to stop driving. He has a hard time even walking some days. His speech today was slurred, but as we spoke longer, his voice got steadier and we had a great conversation. I cried. I know my parents are leaving me. And I realized how lonely that can leave you, even with a spouse, children, and siblings left behind with you. And I cried for my future. How long do I have with my husband and children, and grandchildren? Moving exhausts you; it truly does. I am pretty spent. And the future is just so cloudy, surrounded by lots of tears.

I will rise up. I know I will. My exhaustion brings on melancholy and thinking. Ha-Ha. Maybe I just need that cup of tea and a break! I know my world will continue through my sons, daughters-in-law, and grandchildren. And I know I have lots of time to spend with them, making memories for them to hold after I am gone. Right now, I am still facing a garage full of boxes. Many of them contain my memories. So I will bask in those wonderful memories, as well as embrace what is before me. I will also prepare for my future. My hubby and I realize we need to return to our Whole30 eating regime and add back in some supplements for our future health. We need to stop being lazy in food and meal prep, as well as getting ourselves healthier. Mindwise is back on the menu for me!

I still may have to escape to the mountains for some much needed respite. And believe me, I know that sounds funny, coming from someone who lives in Alaska, in a town of just 8,845 people! But the mountains do call to you! Almost as much as all this green growing all around me gives me peace, the mountains give me stability. I know I am tired. And I know I am blessed. I also know summer is coming. The sun will help. So does God.