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!!!!

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.

Thrown into the deep end

Well….through a series of events over the last few days we are giving my amazing, hard working Dad a month off for respite. He is staying with my older brother Kevin to rest, recuperate and take care of himself. This makes the whole family happy because what he has shouldered the past few years is astounding and the man deserves the break.

So here’s the thing…that literally made me the new round the clock caregiver for the next month….. I’ve got this, right? … well, when I realized I had no idea where anything was in their house I began to question my capabilities.

Two days later, count them, two full days and even though I am being strong for Mom in her varied emotional states and physical well being and handling everything as it comes and then my husband hugs me and I get all emotional and fall to pieces.

I am beyond words when it comes to expressing how amazing my dad has been with Mom in his care of her. I understood it on a mental level but I guess I just didn’t realize how completely exhausting it is to be “on watch” 24 hours a day. Even in my sleep I’m not sleeping as I’m aware of every little move she makes.

Then let’s talk about food and realizing that I’m not exactly sure what she likes to eat anymore and what things are hard for her to eat… or the fact that it’s hard for her to drink out of certain things, like water bottles.

Or, how about keeping her hydrated means we are in the bathroom every hour and she needs assistance there too. Of course, there is her endless wandering and her constant need to pick things up as well.

I feel like I’ve been thrown into the deep end of the pool and told to learn how to swim. It isn’t like Dad can’t answer questions but constantly asking questions isn’t exactly giving him the break he needs and allowing him to not stress about her care.

If I was passionate before about caring for the caregivers….holy crap! Wait until you see what’s coming! Over the next month I plan to share photos and a glimpse into the care and feeding of an Alzheimer’s person. I’m hoping both Mom and I make it through the month in tact, whole and as healthy as can be. Fingers crossed!

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 her voice

Only someone who is dealing with an Alzheimer patient can understand the sweetness of the sound of a person’s voice when they have forgotten how to speak. My mother is not completely devoid of speech but what comes out is word salad and on the rare occasion a full sentence will surprise us all and pop out of her mouth.

I realized the other day that I have come to rely heavily on the facial expressions of my mother to interpret what she is possibly thinking or feeling. She tries to communicate and I give her my full attention but I’m not paying attention to the words or sounds she utters. Instead I watch for her smile, the twinkle in her eye telling me she finds something funny or is happy. I look to see if she is angry or upset by the frown or the dark look in her eyes. I watch for the tears when she is frustrated and can’t speak up for herself. I can tell when my mom has had enough (no matter what the situation) because she starts pacing and/or gets antsy.

All these little subtle signs are her new language and many don’t pay attention. We had a family reunion the other day and many who attended hadn’t been around my mother in several months or close to a year, maybe longer. They were confused on her condition. Wanting to know when it had been diagnosed, how come no one had told them of her condition and how they were to act around her. What I found heart warming was how much they all loved on her and just accepted her as she was.

So I may not be able to hold a conversation with my mom but she is still speaking….if only we are willing to listen with more than our ears. Still, I miss the sound of her voice and I love to hear her tell me she loves me when the words come out.

Getting Personal

So here is a new part of the Alzheimer’s journey…. getting up close and personal with my mom. I’ve read about how parents raise their children and then at some point the children “parent” their parents. It’s part of the life cycle. I understood that on a basic level but today I got to really understand it.

Bless ny dad, as the primary caregivers he does it all but the other day he asked me if I could possibly go with him to get my mom (who has lost weight) new bras and underwear. He just felt “out of his element” in the lingerie store and all the different sizes made no sense to him. Just didn’t know what to buy her. Of course I said I would go and that was our adventure today.

On the whole it was relatively normal. Went to the outlet mall and went into the Hanes/Bali store. Asked a clerk to measure my mom for undies and bras. Then we had to convince mom that she should take off her coat so we got the right measurements. Did I mention she NEVER wants to take her coat off anymore?

Then we picked out some bras to try on. Off mom and I go into the changing room to make sure they fit correctly. Then I had to convince mom to take her shirt and bra off, and put a new bra on. Believe it or not, that part went well. But…(sorry if this is too much information) she put the bra on and I fixed the hooks in the back. When I turned her around I realized that unlike most women who adjust the bra and/or their breasts to fit in the cup of the bra correctly she hadn’t and had no intention of doing so.

When I asked her to lift and adjust her breasts she had no concept of what I was asking. So, yes, it was time to get up close and personal with my mom. I apologized for “getting personal” and then reached in her bra, lifted up her breast and settled it in the cup correctly.

Voila! She had cleavage again and her shirt fit better. It made me think of a mom helping her teenage daughter get fitted for her first bra. I know as things progress we will most likely cross many physical boundaries and personal space. This was relatively minor but a new step in the adventure.

So….we keep moving, keep experiencing new moments together. Don’t worry mom- I got you.

Creatures of habit

Funny how the human is a creature of habit. Even in the middle of disease, we still cling to our routines. Maybe even more so.

We have been snowed in with very inclement weather for well over a week. I called today to check in on my parents and make sure they were okay. There had been reporting a of power outages in their area so I wanted to make sure they were doing okay. Not to mention that they eat out and don’t cook. I was worried that if they couldn’t get out they were struggling.

Nothing to worry about it seems but my Dad told me my Mom has been, and I quote, “hell on wheels” for the past seven days. Which just so happens to coincide with the amount of days we have been under severe winter storms. My Dadand I concluded that it was because she doesn’t like being stuck in the house and is expressing it the only way she can- being a brat. Think of a three year old being denied their favorite treat and the tantrum that ensues…..that has been my mom for the past few days.

Creatures of habit. She was used to by Dad taking her out everyday for a drive. Even if she doesn’t “remember” the routine she still feels it and knows something isn’t happening the way she wants it to. It’s kind of fascinating really.

So, do something for me and pray for better weather. Both my parents could use it.

My Hero

I’ve always considered my Dad one of my heroes. There are many reasons why I have felt that way over the years but I am constantly reminded how strong and amazing he is through the care of my mother.

The patience required to provide 24 hour care for an ALZ patient is tremendous. The fact that he accepts it when my mom is being angry, defiant, petulant, obstinate and hard to handle is amazing to me. I know there are days he wants to wring her neck and give up but honestly…. I can’t say I wouldn’t feel the same if it was my spouse. Even the most loving person can reach the point of being fed up, irritated and done.

The fact that despite everything he gets up every day and starts the whole process over makes him my hero. Of course he is lucky that my mom is an inherently a happy person but I can’t even begin to state how much I admire caregivers they truly are the unsung heroes in this world.