…”In every moment, thank God.”

I am learning almost every day. Which is a good thing. We need to keep learning or we start dying. And when you run into that brick wall called Alzheimer’s, we get to see what that really means. You cannot learn new things with any degree of clarity or competence. You can learn, yes. The results are spotty, at best.

That is a woman’s wallet. My mom used one of these for years. It is practically falling apart. She asked for a new wallet. Something easier and smaller to use.

This is the type of wallet she chose. We sat and moved all her things to the new one. She was pleased because it would fit into her new purse so much easier. She chose a brown one so it would not show the dirt.

I cannot fully express the drama this small change has made. It changes the entire tenor of what is coming next, or what it is we are moving towards. Maneuvering through the process of purchasing something was pretty awful. She cannot find anything in this little wallet. She actually kissed her old wallet when we got home. So I am thinking of getting rid of the new one.

One day, it was socks. Hers did not match her trousers. No one would see them, because she was wearing boots, as well. But she was miserable. I remembered my tan trouser socks and gave them to her. It changed everything. I hid all her pantyhose and knee-high hose. The confusion having a choice makes is beyond her. I have taken to laying out her clothing and she just puts it on. Normally it goes smoothly. When it came to putting on knee-high panty hose versus trouser socks, we had a little problem…so I removed the problem. I should have paid attention to myself. Ha-Ha.

I thought it would be fun. I had purchased a movie. Mom and I are home alone most nights this week, so I thought, “Let’s grab some grub and put on the movie.” We went to Qdoba Mexican Grill and Fast Food. (Mistake 3 or 4 that day, by me!). It had been such a great day until we left the house! LOL! There was disaster using her wallet to purchase new flannel pj’s, and now she had to choose what to eat, and then buy it. So much noise, too many people, and too much to look at and take in all at once. From what I have learned, this entire situation was going to be bad; I knew it the moment we walked inside. For an Alzheimer’s patient, their brain just does not take in all that stimuli at the same time. It is just too much to process. So, I chose matching Chicken Taco Salads for both of us. She asked for several things on hers that I did not want, and she screwed her nose up at some of my choices. But we got our salads. Then there was the whole wallet thing. Ugh. We got out the door after a few minutes of chaos.

We came outside to rain clouds and a sunset. All past issues were forgotten as she regaled me with stories of her grandfather, how he is still close to her, and how they described shapes in the clouds. She was happy. She loved looking at the clouds; it is one of her happy places. And that is the thing with Alzheimer’s disease…it truly goes moment to moment. Earlier she was upset and wanted to go back to CA because up here you wear too many clothes (she was having problems with the socks and finding her old wallet in her drawer), and now she was excited over her new flannel pj’s and wanted to cuddle up on the couch and watch a movie. Moment to moment.

As an Alzheimer’s caregiver, we all need to be cognizant of the purity of these moments. Pure confusion. Pure joy. Pure anger. Pure happiness. Alzheimer’s sufferers have no filters (usually). What you see is what you get. Is it pleasant? Many times it is far from pleasant. But in the moments of joy, it is unparalleled. The days are long and are made up of the moments we have. In order to find joy in this process of caregiving, we have to focus on that (perhaps only one) moment in the day where we have had success. And we thank God for them. Reluctantly, I even thanked God for the hard moments because I am learning from them. Truly I am. And because I am learning, there are fewer of the bad moments. We are having more of a connection, more often. More meaningful moments and connection – true communication. There are more moments to smile about. Don’t get me wrong. The bad moments are sometimes pretty awful. But I am learning to let those go. I learn from them and try not to provide triggers that create them. And I am learning to treasure those good moments, often gone within a heartbeat.

Yesterday, overall, was a success. There were some truly crappy moments when I had to, on the sly, explain and apologize for my mom’s rudeness and irritation. Everyone was so very kind. But did we have some amazing moments? We did. Laughing during her shower about our hair. Cracking up about all our wrinkles. Laughing at how cleansing products have changed over the years. A wonderful, loving hug and kisses as I tucked her into her flannel sheets and jammies and we wished each other pleasant dreams. Unparalleled.

I will continue to learn from her; learn to leap easily between Alzheimer’s World and Reality and back again, in a moment. It is becoming better and better. I am becoming a better caregiver. Mom is being mom. We got this. And God? He is in every moment. I can feel it.

 

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.