Saying Goodbye while Holding On

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So many of my holiday memories focus on special times with my mom. Shopping, decorating, wrapping and cooking–all the best of Christmas for me. At this time of year I am especially aware that these are the very things I leaned from her and wish I could still share with her, but I can’t. The grief is strong, but the love and celebration of what I still have with her is stronger.

The pace of Alzheimer’s Disease and the way it slowly takes my mom’s personality creates for me a confusing mix of loss and gratitude for what I still have. The pain of saying goodbye one memory at a time can feel excruciating-like prolonging the most painful heartache. Grieving the slow loss of my mom to Alzheimer’s is messy, for me a rather ugly jumble of sadness, anger, hopefulness, regrets and questioning, usually punctuated by a healthy dose of tears.

So how do I say goodbye to these precious parts of who my mom is when I can still sit down and talk with her?  This saying goodbye while holding on, sometime referred to as ambiguous grief can feel cruel. The times that I can still really connect with her come as welcome surprises, sometimes reliving an old memory on the phone or looking at pictures of special times together. The best, and at the same time the worst is when she recognizes my grief and tries to cheer me up, just like she always did. Shouldn’t I be the strong ones now? Sometimes I even feel like we are grieving together, understanding the other’s loss and somehow holding each other tighter.

Grieving the slow loss of my mom to Alzheimer’s Disease can feel devastating and yet connecting, overwhelming and yet peaceful, and fleetingly final while being largely unending. Thank you Mom for pushing through the confusion to connect, to offer peace and to express love. Today I choose to celebrate the powerful parts of you that endure.

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Trying to Understand Her World

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When I see Alzheimer’s in my mom, it looks like a confused glance, an angry outburst or a mismatched outfit. It’s anxiety about getting dressed in time for church that is still two hours away. It is not remembering how to put on her socks or use a seat belt. It is her wanting so bad to be helpful, but knowing that she is making it worse.  But I also see, a simple beauty in her actions; a hug out of the blue, or reaching out to hold my hand like when I was young. It’s also precious comments that don’t always make perfect sense, but help me to connect with the part of my mom that I love.

When my mom sees Alzheimer’s she sees chaos, nothing feels familiar anymore. She wakes up in the middle of the night in her bedroom and experiences a place that she observes to be a place that she has never seen before that is filled with strange objects. There are many nights that she bravely gets out of bed and tries to find something to make her feel safe, she wanders around the rooms of their home stopping to empty drawers or relocate items. I marvel at what courage it takes to live every day, and night this way.

When I told her that I was writing a blog and wanted to know “how it felt” to have Alzheimer’s, she said, “the most important thing is to be aware”. As we talked I became even more cognizant of the intense energy that goes into her trying to make sense of the confusing the cues that her brain sends constantly. It seems that frustration and sometimes embarrassment follow close behind when she senses that her actions are unexpected or misinterpreted. It’s hard to imagine this chaotic world that my mom lives in, but I am so blessed that she does it with such flair, and laughs often as if to say I get it, it’s a little funny, but it’s me.

 

When It Was Time as a Family to Step Away from Denial


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It’s hard for me to imagine what it took for my dad to call and ask for my support in moving our family away from our disconnect with his reality. In hind sight, the denial was convenient, the only reason it worked was because of the distance. Looking back, it was all too convenient to explain away the lapses that had become common with my mom. My dad needed us to be with him in moving forward an acknowledging the diagnosis of Alzheimer’s disease. Below is an email that I sent to my three brothers as a sort of call to action.

Hi, hope this note finds each of you well. How strange that I should have to communicate with you in this way (email). It’s like the family meeting that we used to have that I cried all the way through. Some things never change.

I am writing to ensure that we are all on the same page and in the know about Mom and her rather complicated and somewhat confusing health situation. As I think each of you have heard, Mom was diagnosed with early stage Alzheimer’s disease in the past year or so. She has been in some clinical trials at the Mayo Clinic and has tried a couple of different medications that seemed to help, but she had some difficulty tolerating. She is being considered for another clinical trial that is more invasive, but it has become clear that even with all of the treatment that she receives, her condition is slowly deteriorating.

The changes are insidious and hard to detect over the phone, which is great for me and I assume all of us most of the time. She continues to function at a very high level but deficits have become obvious when spending time with her in person. The things that I found most noticeable during my recent visit were: she doesn’t like to drive or be by herself, she has stopped doing many of the things that she used to do (i.e. cooking meals, grocery shopping on her own, writing letters, running errands, etc.). She seems more tired and isn’t sleeping very well. She is losing her senses of smell and taste and her appetite is diminished which is causing her to lose weight. She loses her thought mid-sentence and forgets what she was talking about. Having said all of this, much of the time I spent with her felt just the same, she was as warm and wonderful as ever. We went to concerts, got pedicures, went shopping and all those things that we love.

While I was in Phoenix, I had the opportunity to go to her primary doctor with her and Dad. Dr. Reidy is wonderful and I feel very confident that Mom is getting the best care available. She also sees a neurologist who specializes in Alzheimer’s disease who I understand is renowned in the field and has already gained the confidence of both Mom and Dad. I also went to a lunch meeting with Mom and Dad and their “Support Group”, now that was an experience! The group is wonderful, really dynamic and encouraging and actually hilarious. They have given themselves the name CRS (Can’t Remember Shit), and believe it or not, Dad was not even the one who came up with the name. The day I left this group walked in the Alzheimer’s 5K. This seems to be the greatest therapy available to both Mom and Dad, I am so thankful for this resource that fell into their laps.

I think that it is also important to touch on Dad and how he is doing. Mom requires his full time love and attention which he gives without thought or limit. His attitude is predictably positive and he has found a wonderful balance of nudging Mom to stay active and not pushing her harder than that which is comfortable for her. He has somehow found limitless patience with having to repeat things and relieve her tension when she gets anxious, (she seems experience more anxiety around keeping commitments and remembering where she is supposed to be and what needs to get done). I probably shouldn’t have been surprised, but his resilience and compassion were endless and the natural and perfect solution to Mom’s anxieties and limitations. I honestly cannot imagine anyone handling this situation any better than Dad is doing. They are both amazing.

In conversations with Chuck and Dad, we decided that making sure that each of us understood the subtle changes in Mom’s condition was important. I think using this information to adjust our expectations and provide support and understanding is most helpful. Please know that both Mom and Dad are comfortable discussing these things and neither have let the health issues define them.

I love being your sister and am glad that we have each other to talk with and support while we find new ways to support and love Mom and Dad. Feel free to call if you have questions or whatever.

Love to all of you.

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Clinical Trials…A Difficult Decision, the Right One for My Family

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In January 2013 as my parents explored the possibility of participating in an especially invasive clinical trial, my brothers and I waited. It was much earlier in the disease process then, and doing something so invasive didn’t make complete sense to me. As I grappled with denial, I wondered if the early Alzheimer’s diagnosis was even warranted. Inwardly, I certainly wasn’t ready to consider the option of an experimental procedure called deep brain stimulation. “Wasn’t she already going through enough?” I thought. “Aren’t there others that could do this?” My mom was never one to step too far out on a limb, “so why now?” The questions were incessant, but I stayed quiet. I knew that my parents would be careful in their consideration of joining a clinical trial, especially this one.

At some point, they asked for our thoughts on moving forward. The brain surgery involved placing wires in my mom’s brain and a pacemaker-like device in her chest. There was a 50% chance that after this surgery that she would be in the placebo group, and “the device placed in her brain wouldn’t even be turned on.” Everything inside me said, no, “I don’t want my mom to go through anything else”. But, I listened and heard the excitement, albeit mixed with concern in my parents’ voices. They were already frustrated by the daily struggles of my mother’s Alzheimer’s disease. Struggles that included forgetting friends’ names, feeling anxious and getting disoriented in a shopping mall and police having to take her home.

My parents were emboldened by the possibilities to make a difference that the clinical trial offered. So I agreed, “I think you should do it.” I see now that by taking part in this clinical trial and others, my mom and dad (her caregiver) have taken the power back. They have become part of the solution. They do it for my Aunt Ann, my mother’s sister who died of Alzheimer’s disease 25 years ago, and they do it for all those who will be diagnosed after my mom. They are not content to let Alzheimer’s continue to have the upper hand. They are an essential part of the movement toward a cure. It will probably not be the cure for my mom, but it may be the cure for one of us kids, or maybe her grandkids or maybe someone she will never know. The early questioning aside, the clinical trials have been the right thing, they have given my mom her power back.

Thanks Mom

As I begin a new adventure as a blogger, I feel a bit nervous, confused about the process and intimidated by treading into a new area that I don’t really understand. It’s not lost on me that this is likely just a small taste of how my mom starts every day. She has Alzheimer’s disease. If she can somehow make enough sense out of her jumbled and confusing thoughts to put together a way to get out of bed and negotiate getting dressed, (even if her clothes are inside out and her shoes don’t match), I should be able to stumble through this process. So, with the bravest and most wonderful mother in the world as my inspiration, here I go.

I am by nature a peace-maker, a trait that I inherited from my mom. She taught me well and I am usually successful. But, my journey to make peace with this imposing and most unwelcomed new part of my family’s life, my mother’s diagnosis of Alzheimer’s disease, will be the ultimate test of my abilities. As much as I want to be a “glass-half-full” person, the reality is that the “half-empty” feeling usually comes first for me. But, I am also a fighter, (this trait I inherited from my dad.) In my heart of hearts, I know that there is a path to make peace with my family’s new reality.

I have been given a lot. My parents live in a wonderful retirement community in Phoenix where they are surrounded by support and resources. My father’s unimagined abilities as a caregiver make my mom’s life rich. My three amazing brothers and I, although separated by distance remain close and involved in our parents’ lives. I wish that my mom did not have Alzheimer’s, but she does. Even so, each of us searches daily for a way to love each other and live each day to its fullest. This by the way, was something my mom modeled for us every day growing up and continues to do so with the utmost in grace and authenticity. Thanks Mom.