All week I’ve found myself tearing up as I drive past the road that leads to the nursing home where my mother lived. I pass the road to Hospice House, where she died December 31, 2011, far more often and rarely think of it. Yet each time I pass the road to where she lived, my eyes burn and my thoughts swirl. It’s incredible to believe that one year ago, 365 days, we were celebrating her 68th birthday. I wrote the post Ode To Birthdays Missed last year, as I struggled with the progression of her Huntington’s Disease and the inequities I saw in her life and my life with her. When I wrote that post, I had no idea that two weeks later she would fall and break her elbow, end up in hospice and die two+ months later. A broken elbow was not how I imagined it would go. One year ago, I was frustrated by her inability to do things the way I wanted. I was tired of her needs and her disabilities. I knew I should appreciate her hugs, but I didn’t always. I was sure she would be around for a year or two more at least… and frankly, couldn’t imagine it really ending. One year ago, everything felt different.
A year ago, Mom didn’t care much about appearances. Clearly.
Today as I face Mom’s birthday without her, I would give anything to see her dress in one of those crappy outfits she loved and take her to dinner. If I knew then, what I know now: that it would all end and I’d miss all the things that bugged me so much 365 days ago, I would linger longer and listen to her silence. I would be more patient as she struggled with the seat belt or tried to read the menu. I’d wait to order dinner, and be more grateful for the opportunity to be with her. One year ago, fall was edging in as it is now and I was annoyed by the expectation that I must spend time with Mom, that I should be at a nursing home on a nice afternoon, or make time to bring her over for dinner when I had three busy high school students to take care of. One year ago, China and Denmark had just arrived, and I found myself explaining my mother’s appearance to them, helping them feel comfortable with her and her condition, when I could barely stand it some days myself.
My favorite: when Mom had a Monopoly on fun. 1999.
One year later, 365 days: There are so many things I regret. There are so many blessings I count. When I re-read the post Ode To Birthdays Missed, I read it with the hindsight I knew would come after. I had no idea then, that it would come so quickly. A year ago, I was too busy resenting all the time I had to spend helping Mom. I was too busy feeling guilty for all the times I didn’t spend with her, or the times I spent resenting. I knew this would come, but it was impossible, in the moment, to stop and remember that. We had fallen into a predictable struggle, my mother and I. We had our good days, but many days were a familiar routine of me pushing her buttons and her pushing mine. Her coordination may have been shot, but she could still push a button! I tried, so often, to put my shit aside and be present with her. And many times I was. There were times that I took her for her pedicure, or shopping for new clothes… clothes that she would never wear, because she fell and never got dressed properly again. I took her to look at the foliage, just days before that last fall, when I knew she was feeling down: frustrated with her failing body, frustrated with her lack of freedom. We drove around the lake and watched the season changing. She loved autumn. She loved to go for drives. It felt good that we were able to enjoy that drive, without the usual tension and expectations, and just enjoy the beauty and moment instead.
Mom, when she felt her shiny best. 1989’ish.
One year ago, I didn’t get her any real birthday presents because I had just taken her shopping and she didn’t need anything else. She had lost her appreciation for fine things; she had lost her desire for a lot of things that she once liked. I brought her flowers, something she loved, and we took her out to dinner, the other thing she still loved. The restaurant was loud but she liked it there. The waiter knew her a little and was always kind to her, always respectful. That night he bought her a second drink for her birthday, after I said two drinks were not a good idea (always worried about falls). She raised the glass and smiled at us all as she drank that second cocktail. “Happy Birthday dear,” the waiter said to her, and I knew she felt normal for a few minutes. She didn’t notice that he said “dear,” or that he probably thought she was older than she was. Mom was grateful for his playful flirtation, and she was happy to have a drink and forget a little. As much as I worried about her falls, in the end I truly understood that part. Trapped in a body that failed her on the most basic of levels, and stumbling around in a mind that vacillated between sharp, fuzzy and full-blown dementia, depending on the day and time, Mom had every reason to want to escape.
In the end, some of the moments spent in this hospice bed with her were the sweetest of all.
One year ago I already understood that I would face a lot of mixed emotions in her passing, but I absolutely believed that I had at least 365 days more before I’d have to face that. The greatest injustice in a slow decline is the miscalculations that come. The end always seems near, but not here. Though I frequently thought that death would be a blessing for her, I did not anticipate it anytime soon. We all felt sure, at the time, that we had a few more years of struggle ahead. The decline felt endless, so an end remained nebulous. We all wished for it at one time or another. The agony of watching her deteriorate was often too much to bear, and we each had moments when we wished for the suffering to end. Her suffering and ours. We each struggled with our own demons as we watched her lose pieces of herself. I knew that all of the issues that she and I had left unresolved were still simmering somewhere below the surface… for both of us. I was not caught unprepared; I’d told myself countless times that the end would bring it all to the surface. However, I didn’t fully understand that all of the clichés of grief might be true for me as well. In the end, I was merely throwing punches in the air. I was fighting old battles that truly didn’t matter anymore. I would never resolve things the way I might have wanted, for so long. As I sat alone with her in the Hospice room on December 31st 2011, and watched her draw her last breaths, I felt so many of the things that I’d felt bound to for so long, just dissipate as she left me. It hadn’t occurred to me that the battle might end that easily.
365 days ago, Mom was happy to say cheers.
In the 365 days since her last birthday, since that other post, I have had so many kind and thoughtful people reach out to me. I have had so many of you say that you’ve struggled with the same issues, similar losses. I have come to know that many of the people I smile at and pass have parents with dementia, parents who need care. I see that so differently now and feel such compassion for a path that can be so similar and yet entirely different for each of us. I have been blessed with a lot of support and a lot of kindness. I am grateful for each one, and all the more for how unexpected some of them were. In the 365 days since Mom’s last birthday I have gained a much broader understanding and acceptance of things between us. I have come to miss her much more than I anticipated, but the letting go of so many things has made for lightness I never foresaw. What a difference a year makes. 365: It’s not just a number. Happy Birthday Mom.
Are your parents still alive? Do you appreciate them, do you struggle with carrying for them, or are you still working through issues that seem to never end? Share your thoughts in the comment section; I’d love to hear from you. Take a moment and hit the Like button if you enjoyed this piece.
TALES FROM THE MOTHERLAND 
So so true. We often don’t know what we’ve got till it’s gone (an old cliche, I know). Regrets, blessings, lessons says it all. Peace. forgiveness and acceptance will flow from that.
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Thanks Maryanne. Those cliches are around for a reason. 😉 Appreciate you taking the time to read and comment. Thanks!
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We lost my wife’s gran two weeks ago and her cremation was this week. However she was 98 and had a full life. I’m so sorry to hear of your mum’s passing as she was still quite young and I understand when you say you expected her to be around for a lot longer. My wife lost her dad with a brain tumour when he was only 53 so that was a terrible shock to her family. She sends her love now x
My dad is 86 and has fairly bad dementia. I spend as much time as possible with him – singing old songs and holding hands. He is brilliant and always has been – his eyes are like that of a bright child and he’s still really funny and warm
We must make the most of life everyday and try to love everyone as much as possible. Time is precious and we never know how long we or anyone else has.
Thanks for sharing – your writing is excellent. Regards, Dave
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Thanks Dave. Nice to have a new reader who has not read all of this before. I wrote a lot about my mom last December and on and around her death (12/31/11). It was a powerful time, and while we had lived with her illness for a long time, it was an enormous blow to see her go. I wish you all of the best with your father. It is a very difficult thing to see a sharp mind disappear, or wander… strength and patience. May your journey be as easy as possible.
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Thanks my friend – we all have to face these things and could all suffer the same fate. I really do try to live each day fully and enjoy every minute. My old Aikido sensi said we all want an easy life but it is through difficulty that we grow as people – but not too difficult hopefully 🙂
Nice to have connected and I look forward to sharing in the future.
Good night – we’re off to bed.
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Aha, a clue… guessing your one of the UK readers I noted today! 😉 Maybe I need to start posting something about the Henley Regatta, biscuits, tea? Take your lead. Ta ta.
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Yes, I’m from Solihull about 20 miles from Shakespeare’s birthplace at Stratford. The Henley Regatta is rather posh for us ordinary Brits although tea and the weather are always topical.
You must be from Samoa then, I’ve had a couple of views from there today – that’s great, I’ve always wanted to meet a South Sea Islander – can you catch fish with a three-pronged spear? 🙂
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Sorry I was only joking. You’re Canadian, right? 😉
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US. Pacific NW 😉 But very close to Canada.
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Wow – that was a guess after my earlier silly stuff. Is it a nice place to like?
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You state it all so well. Try not to be so hard on yourself– you had a full year- your mother, 2 foreign exchange students, your daughter’s graduation…
My parents are 82, 84. In the house I grew up in so that in itself is a challenge. They have made no plans so it will be on the 4 of us – all crisis intervention. I can’t imagine life without them so I know the adult me will absolutely crumble. Thanks for sharing.
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I’ve come to believe that we crumble- in one way or another- whenever and however we lose our parents. It’s just a difficult transition no matter how it transpires. How fortunate for you that you have them around still, that they can live in their home (yes, so strange to imagine your childhood home… I had so many, I can’t imagine one!) and that they get to know their great grandchildren! There will surely be some crisis intervention, but given their long lives it seems you are all doing well so far. Have a wonderful weekend!
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Dawn you can take comfort in knowing that you were there for your mother. You were an outstanding daughter, you loved her and you did for her whatever was needed. She wouldn’t have wanted you to feel any regrets.
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I think regrets go with the territory Jillie… of our history. That said, I did feel good about the end, and I know she felt and was loved. Thanks for all the support dear friend. xoxo
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I so admire your openness and honesty. Regret is such a difficult thing to bear. Maybe it’s a pre-requisite for appreciation?
As for my own parents, they are in their 70’s now, each living over an hour’s drive from me. I wish I could see them more often, and at the same time, jeez! I’m at the point where their age is becoming much more obvious. I hate to see my Superman-dad turning frail, forgetful and so absorbed in planning his estate. I just spent the day with him yesterday and had to bite my tongue to keep from yelling, “STOP IT – I don’t want to plan for your death because then it might happen!” He still works, way too much, just to make money for me & my brother. I keep telling him I don’t want the money, I just want him around more, but that’s not the way he feels. He’s so old-fashioned, with feelings of self-worth dependant upon how much work he can do for others. My mom has me worried because she tries to take care of my nieces (it’s complicated) but she takes on more than she can handle. Her health is pretty good, but her strength is failing. She arranged a beautiful vacation on Martha’s Vineyard with us girls this past June, and it was hard to hear her say that it’s probably the last time she’ll be able to do all that. I will be alone in caring for her when that time comes (again: complicated). They both remember you very fondly and my mom keeps saying how much she’d love to see you 🙂
I often feel like I was absent the day they handed out instruction manuals for this stuff. A quote comes to mind: “We’re all put to the test… but it never comes in the form or at the point we would prefer, does it?” – Anthony Hopkins’ character in The Edge.
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I’m pretty sure no one got the manual dear friend. We’re all just floundering along, hoping to do our best. I think, what I most intended in this piece was to point out that we can’t always do it all. I can’t be a cause supporter. I do support HDSA, couldn’t support it more… but I can’t do the walks, and groups, etc. At least not now. I’m so sorry you too are watching your parents decline. I suppose we all do, sooner or later, whatever the cause or circumstances, and surely it’s never really easy. Right? Give your mom a big hug for me and tell her that every time I play Scrabble, I still remember her playing it in french with your aunt (?) by phone. My best to both your parents, and a big hug to you as you work your way through this mine field. You’ll be fine. We both will. 😉
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Scrabble in French… I totally forgot about that! Sad to say we lost that aunt to colon cancer not too long ago. I have played Scrabble way too infrequently with my mom, and she loves it so much. Thanks for the reminder, I’m putting it on my carpe-diem list!
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Just set up the board and make it a phone thing… that’s what I most remember. Your mom playing scrabble by phone. I’ve thought of it so often over the years! So sophisticated, I thought! Sorry to hear about your aunt. 😦
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Oh my Dawn, I had already shed a few tears for your Mom even before you wrote this one. I have Carole’s bday on my calendar yet and it was always time to send a card and a nice long chat on the phone. When I saw her birthday coming up, I’ve been reminicing about all the times we had together. And the pics of her you posted are remarkable! The Carole I knew was the Monopoly one, I even remember her wearing that sweater! Anyway, I suppose regrets are just a fact of life for children of aging and/or ill parents. My Mom is reaching that point in life and I am the one to have to deal with it all. It is joyful and sad, humbling and strengthening, but already resentment creeps into my soul and I dislike myself when it rears it’s ugly head. You my dear, have been an incredible daughter to Carole and you need to give yourself a pat on the back and recognize that your Mom knew what you were doing for her. (she told me so!) And thanks again for sharing!
Sally
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Thank you Sally, for reaching out once again. It is so wonderful to know that Mom still had you out there thinking of her. It often felt like there was no one. So sorry to hear about your own mother; I truly understand the conflict you share here. I’ve come to accept that it often comes with the territory, so I’ll say the same to you: you have been a wonderful daughter and no doubt your mother knows and feels that. It is not always easy (for physical or emotional reasons) to express it all, but when you’re feeling those resentments, just remind yourself that it’s a marathon, not a 5k. Thanks for touching base again and for reading along! Hugs. D
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Reblogged this on The Huntington's Chronicles.
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