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.

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.

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. 

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.

Caregiver in Crisis

I’m going to be honest – I’ve waited almost a week to post this as I am just getting myself back into a semblance of emotional balance over what happened last weekend with my parents. This ride on the Alzheimer roller coaster definitely has twists and turns that I am not prepared for. A week ago, my father called me and I think surprising both of us he unloaded the depth of his emotional crisis on me in one fell swoop.

The thing is, for anyone who knows my dad, he is one of those strong, silent types. He is also a rock. The strong support of his family so this tidal wave of emotional turmoil and frustrated rage was completely unexpected and out of nowhere. As the primary caregiver for my mom, my dad has had 24/7 care of my mother since her diagnosis three years ago.

For about six months, we – my brothers and I and our spouses, have all noticed that my dad is looking “tired” but of course he has denied that until just recently. We all knew that care of my mom was taking its toll on my dad but as my dad wasn’t really willing to let anyone in and let anyone help him care for mom there wasn’t much we could do except remind him we are here to help him.

Obviously, last weekend he hit his breaking point. My mom and dad have been married for 53 years and the absolute love they have for each other has always been obvious – an example to us kids on what marriage can look like so imagine my surprise when all of a sudden my dad is telling me things like they are going to get a divorce – he will let mom come and live with one of us kids etcetera, etcetera.

My logical mind was telling me – he didn’t mean anything he was saying. He was crying out for help. Telling me in the only way he knew how, how very bad things had gotten and that he couldn’t go on. My emotional heart shattered both for my mom who let’s be honest here, doesn’t have a clue what is happening, for my dad who has pushed to the point where he would walk away from the woman he has loved for 54 years because things are so hard and for us kids who would be devastated if dad did take such desperate measures.

He “poured it all out” on me for thirty minutes and was much calmer by the time her got of the phone with me but that call left me with a lot of work to do. I called the ALZ hotline (1-800-272-3900 – thanks to T.R. for making me call them immediately) and spoke to a counselor and I can’t believe what a help it was. They talked me through my own emotional state, talked to me about my dad’s state of mind, loaded me information and then pointed out what they thought were good options care to discuss with my dad.

They told me to buy the book “The 36 hour day; a caregiver’s guide to Alzheimer’s”  for my dad – which I did and it just arrived in the mail. I’ve browsed through it and know I need to buy myself one too. Its a amazing – just saying – and I think it will really help my dad understand Alzheimer’s in a way I don’t think he has been able to see it.  They also showed me how to use the ALZ website effectively and showed me how to find local support groups.

I went over the next day and talked to my dad about all the information they gave me. He listened. He cried. I cried and then I have left him alone this week to process things. I then called both my brothers and updated them on where we were with my mom and dad. I wanted us all on the same page – working together to support my dad and in the end my mom. We’ve been so focused on taking care of mom that we have left dad to his own devices and now our dad is in caregiver crisis.

As a caregiver it is SO important that they take care of themselves. that they are supported and that they have a safe place to unload. In this case, my dad is watching the woman he loves disappear before his very eyes and struggling every day to just get through one more day and all the challenges it brings. So, my mom is where my mom is in the process of this disease – it’s an unchangeable fact and now our focus has to be on dad.

To say that his emotional dump shook me up would be an understatement. Rather it was like getting hit with a tsunami, followed by a tornado and I have felt all week like I am now standing on the mountain top looking at the emotional ruins. I can see all the work that is to come but I can’t summon the energy to take another step. So….I have been licking my emotional wounds so-to-speak but I am not one to ignore a challenge for long.

My older brother said something that I have been thinking about everyday: “As long as mom is alive there will always be one more step to take along this path.” We have stepped into a new phase of this disease and I am left wondering if every step will be so devastating. But….I did learn that my personal support group is so much bigger than I realized and just like my dad needs love and support so he can love and support mom through this, my friends and family are there to love and support me so I can love and support him. It’s one big circle of love and I am so grateful for that.

 

Moment by Moment

Mom and Dad dropped by for a visit yesterday. They were running errands and decided to swing in. I’m so glad they did.

I work from home and the break up in my day made a nice change. It was nice to sit and visit without any agenda. My mom greeted me warmly when she arrived and tried to stay engaged with the conversation. It was a “good day” for her, for the most part.

After about fifteen minutes her attention got taken with all those little “detail” things that seem to capture and not let her go. (Like zipping and unzipping her sweater) It’s almost like watching someone with OCD. Then something we said  would drag her back to the conversation. This pattern continued on for the duration of their visit.

Of course, when it was time to go, there she was again. Fully present. Offering me hugs and kisses and never failing to tell me how much she loves me and how proud of me she is.

As they left with laughter and smiles I realized how blessed I was to be able to just take the moment and enjoy it for what it was, as it was. I’ve said before if there is any lesson to living with someone who has Alzheimer’s then it would be “LIVE IN THE MOMENT”.

Its all they have and all you have really. It’s about becoming aware of the gift of the moment. Yeah, in one minute my mom’s eyes may get this faraway look as her brain malfunctions and she is taken on a mental journey we can’t go on with her but those moments when she is fully present and engaged with those around her are beyond powerful in their connection.

Clouds on a Sunny Day

Today is my youngest son’s 21st birthday. By all rights a day of celebration, a rite of passage, a milestone moment. As a family we went out to celebrate and went to a local food spot where we could get a “Pie and a Pint”. Some of the most delicious pizza with a pint of whatever is on tap. It’s a great little spot and made all the more enjoyable by the fact that Mom and Dad joined us.

Conversation moved around the table fast and furious as it usually does when we are all together. It was obvious that my mom was having trouble keeping up with the conversation and its quickly changing topics. That’s okay. We’ve all come to expect her to ask us “What?” several times as she tries to be part of everything around her. For all intents and purposes this was a great family time. A joyous, sunny occasion. But as I’ve come to understand with Alzheimer’s even the sunny moments bring clouds with them.

Two of my three sons were gathered and my dear sweet mother didn’t remember who they were. (Insert – heart-break for my kids here). They smiled and looked down like it didn’t affect them but as their mom…I know. I see the pain and the hurt in their faces and eyes as they realize that their Nona doesn’t know them by name any more. She “knows” them by sight. She knows they are family. She knows they are my children. She recognizes their names when they are said (for the most part) but the effects of this disease inevitably marches on and little pieces of her continue to go missing. This is just the newest little thing.

It doesn’t happen every time she sees them but its enough for the heart to be flayed open – wounded and hurting – as the family adjusts, as my kids adjust, as I adjust…knowing that the loss of her memory of me is not far behind. I could mope and moan and cry…don’t think that won’t come later because it certainly will but today I will smile and hide the hurt and be grateful that she was here with us today and as present as she could be.

A Time to Remember

I can’t speak for everyone but I am a die hard romantic and I love to watch the Hallmark channel. I will often turn it on and leave it there for the entire day, even if I only catch snippets of movies. Part of this is because I get inspiration from watching it for my own romance writing and part of it is because I’m just a sucker for the emotional films. So….I bet you are wondering why this is my topic for discussion on my blog about this journey I find myself on with my mom. Well, as it so happens, I was working today and needed a quiet place for a conference call so I slipped into my bedroom, pulled up my papers on my computer and then jumped on the phone. In the background on low was my television and of course, it was on the Hallmark Channel. I wasn’t pay much attention to it, just letting it play.

At 5:00 pm, I set my computer aside for a a little bit (gotta have some non-work time too) and turned up the television. Next thing I know I’m all wrapped up in this movie called “A Time to Remember” starring Dana Delany and Doris Roberts.  The info the channel guide gave about the movie was about a daughter going back home for Thanksgiving to reconcile with her estranged mother. Okay, sounds good, but after about 40 minutes into the movie I realize the movie is about a mother and her two daughters coming to grips with their mother’s Alzheimer’s.

*Mental Insert – Oh holy Hannah! I can’t even get away from this subject while trying to zone out on television!* It was hard to watch the movie once I recognized the subject matter but I realized that the more I open myself up to the emotions of this journey, from any direction they come from, the more I can be fully present in each moment and let the emotions play themselves out as they will. Its kind of like learning to swim in a pool so when you are out in the ocean the waves don’t suck you under.

The more I embrace the wild, deep emotions, of this journey the less I expect to be sucked under by the waves of emotions as they hit me. I can experience them, acknowledge them, perhaps choose to sit in them for awhile and then I can release them and let them go.  Now that I have said that….I expect my support network to remind me of that when it appears that I am letting my emotions suck me under. As for the rest of this blog post….I guess I will keep opening myself up to the universe’s guidance through this and learn my lessons, wherever I may find them…even the Hallmark Channel.

The drive down memory lane

My Tio (Uncle) Henry and his wife, my Tia (Aunt) Laurie (not sure if that is how you spell it – I apologize if I got it wrong) did not attend the Silvas family reunion we had on September 1st. When I arrived at the reunion almost the first thing I heard from my Tia Lucy was how much my Tio Henry had been disappointed to hear I was going to be at the reunion and he wasn’t going to make it and be able to see me. Within the course of the afternoon I heard how disappointed he was to miss seeing me at least  ten times. I was sad that I missed seeing him too. The thing is, we haven’t seen each other since I was 15 years old. Yes, you read that right. I haven’t seen my Tio in 28 years! (I haven’t seen my Tio Rueben for that long either) But regardless of that not so minor fact, you could say my Tio Henry and I belong to a mutual admiration society.

I mentioned to my Dad that I was going to have to plan a special trip down to Sunnyside, WA. to see my Tio. At the time that I write this, my Tio Henry is on dialysis three times a week and on the list waiting for a kidney donor. Daddy said he felt an urgent pull to go see Tio Henry too and that he and mom would most likely go to visit him within the next week or so. I told Dad that if they were going I wanted to know when because I would rearrange my work schedule to go with them.

So…a week ago Sunday, September 16th, Dad, Mom and I left my house at 8:00 am and took a road trip to Sunnyside to see my Tio Henry. I got to spend the entire day with my parents all by myself. No cell phone ringing off the hook, no family distractions, no work distractions….just me and them. I’m fully aware what a gift this time with them is and I know  the day will come when I will be grateful I’ve had days like this with them.

Let me jump to a side note here: A senior citizen at my church, Unity of Bellingham, named Chris White once told me that, “when you get old you have a lot of time on your hands and you fill that time thinking about your past. Some pasts are good, some pasts aren’t, but right or wrong you spend a lot of time thinking about what was.” I mention that now because ever since my Dad retired I have noticed how much my parents talk about the past and this trip was literally a drive down memory lane. We were headed to the towns they grew up in, the place where they met and fell in love. We were actually going to the house that was built specifically for my Abuelo (Grandpa). It’s the house my Tio Henry owns and lives in now.

I wish I had a tape recorder with me, to capture all the stories they shared of their growing up days, of how they met, of my grandparents (both sides), of their siblings, their friends and the lives they lived. I soaked it all in but a little voice in the back of my head said, some day your mom won’t remember these stories and you will need to be a living record of her experiences. Remember every word, every laugh, every tear and treasure them because they are a gift. That seems to be my mantra lately. Now, I realize things are positive for mom right now (believe it or not I am in a very positive frame of mind over all this) and that she is in a really good space but it doesn’t stop me from feeling like I am a record keeper, a witness to her life.

The thing is, aren’t we all that anyway? Don’t we all stand as witness to the lives of those around us? Aren’t we meant to experience life to its fullest and fully love and embrace our fellow travelers along the way? I’m learning so many lessons from this journey already and we have just begun. Mom, I firmly believe that some of our biggest spiritual awakenings come from the challenges we face and although I may never get to tell you to your face, I am so full of gratitude for you agreeing to  this spiritual contract, this experience, so you can be a teacher to all of us, your family and friends for truly this experience is about us and what we learn and take away from it.You have always been and you continue to be, one of my biggest spiritual teachers. I love you mommy – thank you for so many things.

 

 

 

 

 

 

 

 

No greater love than this….

“How do I love thee? Let me count the ways. I love thee to the depth and breadth and height My soul can reach”
― Elizabeth Barrett Browning

I received a phone call from my Aunt Sharon, asking for an update on Mom’s last doctor appointment. I was happy to fill her in, even though I was at the monthly coffee-house our church hosts the first Friday of every month. I stepped into one of the back rooms and gave her a brief update. Toward the end of the conversation my Aunt said something that made us both tear up. She said, “I worry about Wally (my Dad) and how he is going to cope with all this. There is no doubt he absolutely adores your mom.” The very thought of how much my Dad loves my mom and how devastating this whole process is going to be for him makes my heart ache and the tears flow.

When our conversation was over I went back to join the coffee-house and caught a picture of my parents in what I call a common pose – them holding hands. My parents have been married for 48 years and my Dad’s eye’s still light up when my Mom walks into a room. I’ve made it a life mission to keep that light of love in my own husband’s eyes because even from a young age I have envied the love my parents share. Their love is like a tangible thing people can feel when they are around them and it is that very love that will be their biggest strength and their biggest weakness during the progression of mom’s Alzheimer’s.

Case in point, I have been privileged to be at every doctor’s appointment so far and I have been witness to what I have silently dubbed “the ritual”/ As we leave the doctor’s office, we get in the car, Dad in the driver’s seat with Mom in the passenger’s seat and me in the back seat behind Dad. We all buckle in and then Dad starts the car but before he drives away, he looks at Mom and reaches out to grab her hand. They sit there for the briefest moment, holding hands and  sharing this look – I can’t even explain the look – but something, some unspoken communication passes between them and then we drive off. To bear witness to that look – to feel the weight of its unspoken promise is both a heartache and a great joy. I fluctuate between gratitude for witnessing those moments and a desire to not intrude on what is so clearly a private matter between two hearts.