Have you ever seen those images of icebergs that try to give more perspective to issues people are dealing with like Alzheimer's, mental health struggles, and learning disabilities? Here are a few examples:
I have been thinking a lot about grief lately. I met with a grief counselor through hospice a month or two ago, and I found it really helpful. Mostly because he listened to me. I sat there and talked and talked about this awful Alzheimer's caregiving journey that is going on 7 years of pain and sacrifice and the waiting and waiting and waiting... Grieving for 7 years feels like a long time, and I still haven't even lost my mom to death yet, which will bring with it another whole level of grieving when it happens. So I reached out to him because I'm trying to pre-plan a bit for the next stages of grief. He was kind and offered words of comfort without trying to rush me through any emotions. He also recommend the book called "It's OK That You're Not OK" by Megan Devine. I'm only 32 pages in, but already I like that she is pretty blunt that everything our society does or "knows" about grief is wrong. She says we are "grief illiterate." There is no prescribed path, there is no timeline, and there should be no expectation that you ever win or beat grief.
They have one of those iceberg images for grief too that simply says "grief you see" (above the water) and "grief that is never talked about" (below the water).
Here's my irony of grief. I want to talk about it. I'm all for talking about it. But 7 years in... no one wants to listen.
So if you're reading this...thank you for listening. I have some things to say about loss, which for me goes hand in hand with grief. I'm calling this post "Loss Avalanche" because I am creating a tangent to the iceberg metaphor and equating loss with one of those giant snowballs that rolls down a hill, getting bigger and bigger as it goes, swallowing up everything in its path.
It's no surprise that I lost my mom to Alzheimer's disease. That's what Alzheimer's does. She is still living, but my mom is gone. She has lost her physical strength, her independence, her artistry, her humor, her powers of speech, her eyesight, her memory... everything that made my mom who she was. It's all gone.
Let's just stop for a minute and think about how that, in and of itself, is enough loss for anyone. For her as a person and for her family that loves her.
For me, as her daughter who will love her forever and a day, the losses continue to pile up. When my mom was diagnosed, I had a full time job in the theatre, and I was married to my first husband. Within a year of my mom's diagnosis, I was 3 hours away across a state border, living with my parents again, having lost both my job and my marriage. Both gone and abandoned because of my life being turned completely upside down with the grief and depression and life shock of this diagnosis. (Like an iceberg, there is a whole other story beneath both the implosion of that job and marriage, but that's a whole separate book I have no intention of writing...!) I have also lost friends and family along the way. I used to be a really good friend. I no longer have the time, energy, or freedom to be the kind of friend I used to be. So it's not surprising that I have lost a lot of friends because I can't be a good friend. I don't reach out anymore, I can't attend functions, and I am no longer an active participant in an abundance of friendships. I have lost family relationships of those with whom I used to laugh and celebrate holidays, but who no longer can endure the trials of my mom's terminal illness due to denial, fear, avoidance, or because they simply need to live their own busy lives full of other people and obligations that make regular visits impossible. I have stopped asking for help, I have ceased seeking their support in my grief, and now if family visit my mom (or us) it's a surprise rather than an expectation.
In the true spirit of grief, it is possible to continue to be overwhelmingly sad but to still find joys and happiness in and around that grief. My silver lining will always be that I met my NOW (TRUE? REAL?) husband and had my NOW (ONLY?) son because I moved back home to be with my family during this journey.
Those pieces of my puzzle always have felt like a gift for the grieving or a candle lit in the darkness.
Again though... two years in to my mom being on hospice and my husband and I moving in with my dad to help... the losses are still piling up. I've worked and lost two more jobs since my son was born and my mom's needs increased. Neither job was manageable with all the time requirements of motherhood and Alzheimer's caregiving. I like my current job, but it's only possible for me to have a part time job I can do from home. Here's a glimmer into why: my dad participates as an official for the state hockey tournaments each March. So while he's there all day and night for 3 days, I cannot leave the house because someone needs to be here with my mom. Being trapped in your home is not conducive to working a "normal" job, unless we were to hire someone full time to care for both my mom and son. This is not in the cards financially unless we all want to lose our livelihood and the potential for a prosperous future, someday...
There are books out there that talk about the dynamic of caregiving when you are a spouse or a child of someone needing care. But what I didn't expect was the dynamic shift for me and MY spouse. My husband has made a lot of sacrifices for me. My first, "practice husband" could not handle my mom's Alzheimer's diagnosis. He couldn't talk to me about it. He couldn't be a part of it. It's one of the reasons we didn't survive it. But my current husband has never known me separate from my mom's Alzheimer's. He knew that to have me in his life, this was going to be a part of his story too. Early in our relationship, I was home alone with my mom while my dad was out of state for the funeral of his sister. My mom ended up in the emergency room because I thought she was having a heart attack. She couldn't breathe, she was shaking all over, I could not remedy the situation. After a long day of tests and fear, the doctors diagnosed it as anxiety and a panic attack. My dad was gone, her main caregiver and her rock had left her. I was not a true substitute, and she had a meltdown. My now husband (boyfriend at the time) showed up with flowers after we got home and tried to show his support for me from the sidelines.
He has always been there with a lifeboat while I am treading water. I am so grateful for his love and support. I was amazed when he suggested we move in with my parents to help. He knew at the time that it would be better for everyone if we were present in the home to help with my mom and to negate the commute for me and our baby. Driving back and forth to my parents' everyday to help out was more than a hassle. In many ways it was the right move.
But now, two years into that decision, little by little, I'm losing my husband. I don't think this is going to break us. I don't think divorce is on our horizon. But we aren't as happy as we once were. Love is not always enough. This waiting game has produced a stagnant existence. Essentially, we are stuck, waiting for someone to die in order to be free to live the lives we really want to be living. That would suck all the joy out of life for anyone.
Living in my parents' basement is not our ideal living situation. We don't really have our own space, privacy, or independence. We have to coparent with my dad because he's around and a part of my son's daily life. My dad is very loving and respectful. He's a wonderful grandparent. I am grateful for the help he gives when we need the help with our son. That does not mean there aren't still struggles. He's around, he's a witness, and he's a helper, so inevitably, he steps into parenting moments, and a little bit of control and our parental ideals are lost because we can't parent in a vacuum.
All of this, coupled with the unknown of how long this will endure, the overwhelming feeling that death is in the air when you walk through our doors, and the fact that neither of us can really seek out our dream jobs or living situation while we wait and wait and wait... it leads to restlessness and dissatisfaction and depression. There have been days when he just comes home from work, walks straight downstairs into our bedroom, climbs under the covers, and I don't see him for the rest of the night. There are night when I need to feed my mom, spend time with her in her room so she's not left alone, and change her diapers. Sometimes on those nights, I don't see my husband at all, and I cry myself to sleep. He avoids her room because it's become too depressing for him to witness, so I go it alone.
We lose quality time and intimacy because of caregiving. Time is ticking away on our hope to have another child, which we don't believe we can do while we live in these circumstances. Another deep loss for my dreams of motherhood. There are nights we plan to be romantic, but after changing a horrendous diaper full of my mom's poop, I lose all desire and need to mindlessly escape into a TV program. Or after putting both my child to bed and my mom to bed, my husband is asleep before I even make it back to our bedroom. Little by little we have lost the things that make us the fun, carefree, and optimistic couple we were six years ago when we met in a warm, hopeful spring. I still love him more intensely than I've ever loved anyone. And deep down I know that he loves me and will never abandon me or my child. Yet every time I lose a little bit of him, of our connection, of our quality time, what replaces that loss for me are more and more insecurities within myself: I am unlovable. I am asking too much. I am selfish in my desire to be selfless. We have sacrificed too much. We lost too much time. I broke us. I am not worthy. I deserve to be alone.
The more I lose around me, the more I lose my sense of self.
So you see, the losses build and build like that runaway snowball. I am still an optimist at heart, and I will continue to find reasons to smile and excuses to laugh. I will continue to express my love to my partner and put one foot in front of the other everyday.
None of that changes the fact that there has been so much loss. None of that makes the grief go away. None of that solves the problem or answers the questions "when?" "what?" "how?" or "why?"
#alzheimersawareness #alzheimerssucks #alzheimers #caregiving #grief #loss #hospice #marriage #endalz #tipoftheiceberg #megandivine #itsokthatyourenotok