March 28, 2018

Wednesday lunch with Jane

I once heard dementia described as the longest goodbye. It was early in Jane’s diagnosis & I had no idea the journey which stood before us, so it didn’t really resonate with me – then. Today, it is all too truthful. And I suspect unless you have walked this terrible path, it doesn’t really resonate with you either. Let me show a bit about how painfully truthful this statement has become.

Nearly 10 years ago, Jane was diagnosed with early onset dementia. We all knew something was not right with my stepmom. She was forgetful, she repeated things over & over without the knowledge she was repeating it & she had horrible bouts of anger – typically directed towards me. But none of us really knew what that diagnosis truly meant. My grandfather had Alzheimer’s but he was old when it developed & living in a home. Jane was young. Still so full of life & hope. Back then, I did not have the best relationship with my stepmom. She was verbally abuse with me & could be crueler than I had ever known a person to be. But she could also be incredibly kind & loving. I loved her & hated her at the same time. I will be honest, when we received Jane’s diagnosis, finally, after a long time of doctors visits & tests, my biggest concern was for my dad. How would this disease impact him & his life. He loved his wife & they had huge plans for retirement. This disease was never on the radar. So I did my best to support my dad – in any way I was able. Initially, that meant allowing Jane to take her anger out on me. I learned not to be upset & react when she blamed any absence of my dad on me. I think this is when I first began to see her hatred of me was not really of me. She simply did not know how to express her emotions & it was easier to be cruel. I stepped back from my dad’s life for a couple of years, accepting only short text conversations or dinner where we spoke of nothing of substance so Jane could stay engaged. Jane needed him 100% & as long as she was at home, this was going to be the case.

Eventually my dad came to the tough conclusion it was time to move Jane into an assisted living facility. I researched facilities & with the help of my brother, we visited facilities & provided my dad with recommendations. I thought I did everything right. We chose a facility, moved Jane in & I still kept my distance. This was a HUGE mistake. The facility was every nightmare you hear about & our family was once again put into duress. We would spend the Christmas holiday desperately trying to do right by Jane & find a safe & secure home. And shortly after the new year, Jane would be moved into the home she has now lived in for the last 2+ years. But along with this decision came my understanding I had to be more involved. So with my dad’s blessing, I have taken over the role as bad cop for Jane’s care so he can simply be her loving husband. We rarely have issues with the facility she now lives, but they all know – if there are questions or concerns, I will be knocking on their door.

I began to visit Jane – first every other week so my Dad could attend a support group. Initially, I only did this to help my dad. But quickly I realized I needed to spend time with Jane – for me & for her. The one thing this disease did was take away her fear of losing my dad & her insecurities that I somehow had always brought to the front of her mind. She was able to simply be Jane. And when her walls came down, so did mine. I found forgiveness for her & my hatred I had previously felt towards her turned to love. And not wanting to put words in Jane’s mouth – I believe she would say the same for me. Before she lost her vocabulary, she would tell me often she loved me & I know her words were pure & genuine. She was not saying the words out of convenience or to manipulate me but simply because they were the words in her heart. I know that because it is exactly how I felt as I began to say the words to her.

Now I go sit with my stepmom & hold her hand tightly. I tell her I love her & I tell her everything going on in my life. She can’t carry on a conversation with me, but I know – most days – she understands every word. And every day I visit – no matter how bad the disease is winning – she finds some way to show me she loves me. I love the time with her – but god do I hate seeing her suffer. And a part of me hopes for her end to come. I can’t say I am ready to say goodbye – but I am ready to see her suffering end. I am ready for her to find peace. And because I believe there is something beyond this human life, I know our conversations have only begun. We have so much to cover & I know Jane will find a way to talk to me after she leaves this world. But until then, I am stuck in this weird space. I grieve the loss of my stepmom – even though she is still breathing. And then I feel guilty for grieving her because she is still breathing. A dear friend of mine told me after she watched her dad die of cancer – “I learned there is something worse than death.” And I suppose that is how I feel right now with Jane. Death will bring her relief. And because I don’t believe death is the end, I suppose that is how I can see death – peace for my stepmom who has fought so hard & bravely for the past 10 years.

So there you have it. Mine & Jane’s story – in a nutshell. And while I hate this disease with every fiber in my being & I hope every day we find a cure so no more families have to walk this same path, I am grateful this disease brought forgiveness. 5 years ago I would have told you I wouldn’t miss my stepmom after she died. I would have told you I didn’t think much of her. Today I know without a doubt I am going to miss my stepmom when she leaves this world. I know when I kiss her goodbye for the final time the only feelings I will have for her will be love – pure, genuine love.

My only regret with Jane is that she & I did not find forgiveness before this disease took over. Learn from our mistakes. If there is someone important in your life who you feel wronged you in some way, forgive them. Not for them – but for you. Life is too short to hold grudges & feel anything but love for those close to you.