When last we worshipped

My mom was raised a devout Christian and I remember hours of listening to her hum or softly sing worship songs my whole growing up.

No matter what activity she would do she would eventually start singing a song of praise and worship to make the task go quickly.

I loved her voice and she would often pick out harmony notes to anyone who was singing. It’s one of those “peaceful happy” memories I have of her.

This afternoon as we were heading back home she had started to get restless and angry. So I turned on Deva Premal in the car. She sings sacred songs of Sanskrit. As soon as I turned it on, even though my mom didn’t know the words and couldn’t speak them even if she did, she picked up the tune and sang along in her jumbled word salad.

Her tone blended beautifully and hearing it made the tears well up. Completely oblivious of me she was in worship mode. She sang and sang and I felt like I was sitting in a church service just for me.

When we pulled into the driveway she asked if we could sit in the car and just enjoy the moment. Or at least that’s what I pieced together from her words and motions. We sat and enjoyed the quiet.

It was a moment that reminded me of the power of music. That it is a universal language that requires no words to get the feeling, the message, across. It certainly crossed the Alzheimer’s Border this evening.

Cocoa anyone?

My mom has been very playful tonight and suddenly asked me for cocoa. Hot summer night and you want cocoa?

Sure thing! Right on it. So….. the negotiations begin. How about we get in our jammies and then have cocoa? She happily agreed. I think she really wanted her cocoa. She even headed to the bedroom to change without persuasion.

We get in our jammies, I make “cocoa” or at least My Cocoa which is BP Hot chocolate made with almond milk, organic grass fed butter, coconut oil and a packet of chocolate Curb. I turn around to pour the cocoa into our cups and she had her empty snack bowl in her hands wanting it filled.

We sit down in their recliners to have our cocoa and watch tv and my hubby shows up to drop something off. She said hello but ignored us in favor of her cocoa. When my hubby left she said bye but nothing really mattered but her snacks and cocoa.

I guess when you want comfort foods/drinks that’s what you want. All I know is she is very happy sitting here with her snacks and cocoa so that’s a WIN!!!!

Changing room drama

My mom has lost so much weight over the last two years…. she’s down to 127#, which for some doesn’t seem all that bad but consider by height/weight standards she should be around 150#. She’s skinny and tiny and frail.

Needless to say, that means my Dad has had to constantly be buying her new clothes to fit her changing weight. One of the struggles has been finding a bra that fits mostly because she doesn’t know how to adjust herself in the bra and keep herself in place.

Then of course, she doesn’t want to take it off as soon as we get it on her. So she sleeps in it now as well. We needed a solution that was comfortable for long term wear and fit well.

So….I decided today that she needed a soft sports bra. Ought to be easy right? Well….at first it went okay but 3rd bra trial in the changing room and my sweet, gentle mama started cussing me out and the most amazing thing happened.

My “Mother Mode” took over and I grabbed her agitated hands and looked her straight in the eyes and sternly told her, “that was enough of that and she was going to stop it right now“. She glared at me as an angry child would but she stopped cussing at me and cooperated begrudgingly.

I asked her if she was mad at me and she said, Yes. I told her she could be mad all she wants but she was going to behave. She glared at me some more so I leaned in and kissed her and told her I loved her. She promptly hugged me and told me she loved me too and things were all better.

We left the store with her happy, laughing and wearing a new comfortable bra. I’m learning that being with her full time is a balance between daughter and parent but the bottom line is this…. when she looks me in the eye and earnestly tells me she loves me….. it’s worth every emotional minute to be able to give back to the woman who spent her life invested in her husband and children.

I wonder when I wander

Well, today was filled with wandering. From the minute she woke up she has wandered everywhere we have been. She can’t seem to settle down today except for one moment when she curled up around me and laid her head on my shoulder and just rested for about 5 minutes.

Her wandering has included a never ending stream of non-sensical chatter about what I can only imagine is everything. I imagine her head is full of thoughts about everything she sees and she just wants to share her enjoyment of her thoughts.

Of course there have been times she had gotten stressed out, cried even out of frustration for no reason I can see but overall it’s been a good day and she has enjoyed herself.

I on the other hand, hit a wall about 3:00 pm. I would have paid every penny I had just to take an hour nap and at one point I was ready to cry myself because I couldn’t get her to sit down for even a brief moment.

…..but we survived. We are both in our PJ’s and watching “sort of” a hallmark movie. It’s actually caught her attention and she’s talking to the actors so I think I can thank Hallmark for the Win!

Runny noses and shaky butts

My whole life my mother had a fantastic sense of humor. She could find the “funny” in almost everything. It was not uncommon to see her eyes twinkling, mouth smiling and the sound of laughter in the air. Even now, with advanced Alzheimer’s she has maintained her sense of humor and joy. I thank God for that miracle.

As her caregiver I’ve had an opportunity to really see the spunky side of my Mom the last couple days. For starters, let’s talk about runny noses. She was folding and unfolding a Kleenex and finally set it aside. There was a little sliver of Kleenex that had fallen off the original one and she picked it up and tried to blow her nose with it….ending up almost stuffing the little piece in her not runny nose. I said, “oh no….use this one” pointing to the folded Kleenex and she started laughing….I started laughing and she proceeded to animatedly tell me in word salad speech why she couldn’t blow her nose in the Kleenex. The end result was we both couldn’t contain our laughter.

My mom used to randomly do these crazy hilarious acts that would leave you with tears streaming in laughter and today she did not disappoint. There is a small wooden and glass table between two recliners in their family room and I sat in one and asked Mom to sit down in hers. She tried to sit on the table and I laughed and said, no you can’t sit there, sit in your chair. To which her response was to look over her shoulder at me with a big smirk and twinkle in her eye before shaking her booty in my face and then promptly sitting on the table before getting up and moving to her recliner. Then every time we looked at each other for an hour we would laugh.

These moments are so priceless and precious. I love my mama’s sense of humor.

Food is an experience

Absolutely no this is simple when your loved one has Alzheimer’s, nothing!

It’s been hot here this week so I was feeling like a little refreshing break was in order. I cut open two popsicle ices and handed one to Mom to enjoy.

🤔 hmmm, too cold to hold. Wrap a paper towel around it. Can’t push the popsicle up the plastic tube. I will do it for you. Distracted by the paper towel around the popsicle and almost dump the popsicle because you’re trying to fold the paper towel. Catch it just in time. Take too big of a bite…spit it out. Suck the juice out of the popsicle tip and don’t want the “ice”….🤔 I don’t think this was a good idea even though she loved the flavor.

Tonight, I decided to make some popcorn as a snack. Put some in a small bowl so she could have her own. She ignored her bowl and wanted what was in my bowl. 🙄 (think I went through this when my boys were little) I finally got her settled into her chair and eating her own popcorn. She looks at me and says, “mmm, good!” Overall I think this was a win as far as snacks go.

Observations from the Field

I am part of many Alzheimer’s support groups online and I have realized that although the groups are priceless in making you realize that you are not alone in dealing with the issues of Alzheimer’s, they can breed a culture where your darkest thoughts are agreed with and confirmed when you should be finding people to uplift you.

Just an observation…..after reading a few posts in the groups lately…..
This disease takes so much from those effected by it but what makes me really sad is how much it strips the caregivers/family members of who they are and leaves them cynical and angry with a F___ you attitude….most often towards other loved ones they feel have neglected or abandoned them to do all the caregiving or neglected and abandoned the loved one in question.

This disease strips our loved ones from us in an agonizingly slow process and strips us as the caregivers, of our sense of connection to humanity, to our community, to those we called family and friends. It’s absolutely heartbreaking. It’s why I am grateful there is a place like the online groups where people can be heard, felt they are understood and definitely feel supported and not alone but the lull of also being supported in dark thinking, negativity and self-righteousness are there too.

I don’t claim to have answers. I have crappy days where I hate the whole damn world and this disease even more but I hope that when I speak up in these groups it is always to love, support and remind others that they matter. They are not alone and that whenever possible to not let this disease steal more from them than the person in their life who has it.

The Sound of Love

I’ve been waiting what seems like forever for the Sound Wave tattoos to become available. If you don’t know what they are, then you should check them out. They are so cool.

You take an audio clip of something, in this case it will be my mother’s voice, and you upload it to their site and they provide you with a stencil of the audio clip. You can then take it to one of their certified tattoo artists and get the stencil put on your body.

Then you download their app to your phone and when you hold it over the tattoo you actually hear their voice. I’m getting my mom’s voice saying I love you because when she no longer recognizes me or can say anything or when the day comes and she leaves this life I will miss the sound of her voice. This way I can remember far beyond that time.

I’ve decided to incorporate the audio stencil with the following:

And the phrase “I’ll remember for you”. The elephant is because elephants never forget, the purple ribbon is for Alzheimer’s and of course the phrase is because even if she cannot remember the bond, the love, we shared I will remember for the both of us.

Um…did I mention that I love tattoos but I am scared to death to get one?! I don’t like needles and I do not volunteer for pain…. so yeah getting this tattoo is a really BIG things for me. I am hoping to get it by my birthday in March but I may need to wait to have the funds to pay for it so I am hoping by the latest to get it by my mom’s birthday in late May.

I was also reminded to take some videos of my mom interacting with family and that is also on my agenda this year. She may be forgetting but I want to hold on to whatever I can.

Puppy love

My sister-in-law bought my mom a fidget pillow in the hopes that it would help her and keep her mind engaged on simple tasks. My dad told me today she won’t use it. Instead she has latched on to a little beanie style puppy dog that they bought years ago and used to sit on the back of their sofa. 

She won’t let go of it and wants to take it with her everywhere she goes. It reminds me of my little brother when he used to drag around a crocheted panda bear my aunt had made me one year for Christmas. He drug that thing around until it looked like a giraffe. He never did anything without it and my mom is refusing to do anything without this “puppy”. 

I know my dad was worried about how people would react but I told him people won’t care and then I said the whole thing reminded me of when as parents, you buy your kid all these expensive toys and they sit there while your kid plays with the pots and pans or empty cardboard boxes. 

Someday she might latch on to the fidget pillow my sister-in-law bought but for now, she’s loving and wearing out a cute little beanie bag puppy. I guess if this is the biggest issue to worry about at the moment, we are doing good. 

Come Play with Me

Today my father dropped my mother off with me for 2 hours which might not seem like a long time, but to her, not seeing my dad for that long was an eternity.  Despite that she did really well.
I discovered something today. When my parents visit my Dad primarily does all the talking. Today without him to “fill in the void”, I discovered two things:

1. My mom became quite animated and chattered a lot about whatever was going on in her brain even though she couldn’t form a sentence, express a full thought, and I didn’t have a clue what she was “word salading” about. I guessed as best I could as she would point at something or stare at something while she chattered but it was delightful to see her so engaged. 
2. There were these heart breaking (for me) moments where we would sit side  by side and neither of us would have something to “say” to each other. This woman who has been my best friend in the world, my one-time confidant in all things, and I struggled to find things to talk to her about. Not because I had nothing to share but because I knew she would be lost with most of my conversation. 

Then as always with my mother, she reminded me to laugh and play and be in the moment.  We conversed in barely there whispers for several minutes and then we laughed uproariously as I tried to take a picture with her. I would hold the camera up and she would see us on the screen and poke at our faces causing my smartphone screen to go all wonky. There were some barely discernible photos and so many laughs. These unfortunately were the best out of trying for about ten minutes:

Then of course we’re those moments when we would sit in silence, holding hands and we would simply gaze into each other’s eyes. Did you know you can have an entire heart filled conversation simply by staring into someone else’s eyes and not speaking a word? Why? Because love crosses every boundary and is felt energetically. It is our true essence and when we let it flow openly no words are needed – ever. 

So words are sometimes the very thing that takes us out of the moment, out of being fully present and takes away our childlike wonder experienced in play. So yeah, Alzheimer’s is taking my mother away piece by agonizing piece but it’s also giving me an understanding of who we are as divine beings having a human experience and even in this “dis-ease” life is an adventure.