Bite Me, Universe!


Note:   This is the only pictures for this one. When you’re totally in the moment, you don’t think to take photos. You don’t document each scene; it’s all there in your mind. Use your imagination to come along this time.  I have included some interesting links, so check them out.  Finally, I can also promise that despite the bleak start, there is a happy ending to this one. Read on!

Yesterday was one of those days when you’re pretty sure that the Universe is plotting against you! One of my  favorite bloggers doesn’t believe that the Universe pays attention to us (though it seems to just have a translation issues in her case, read the hilarious link), but I can’t deny that some days it really feels to me that there is a greater force battering me over the head with “lessons!”  Yesterday, was one of those days.

One of the things that got added to my already full plate, at about 11 AM –after already taking a kid to an early Dr.’s appointment, delivering forgotten paperwork to the high school for another kid, and dealing with a furnace cleaning– was that the nursing home called to say that my mom was “very agitated” and was trying to stand up. Her legs have become very rigid and hard to use, so standing up is extremely risky for her. Standing up spontaneously, with no one assisting, is “terrifying for others,” as Anna, her nurse explained.  Anna also shared that mom was very talkative again. In a previous post, I shared that she had had a few very lucid days. Those have been followed by endless days of nothing. There has been no communication and little acknowledgement that we’re there, when we visit. I admit, it’s been very disappointing after having that wonderful few days with her. Now she was talking again and my day was full.

Rewind:  Last week, I had a particularly difficult day with mom. I went over to visit her in the afternoon one day. I knew as I drove over that I was feeling a little more emotional than I usually am lately. Frankly, to get through all of this I’ve been fairly cut off from my feelings. I don’t cry often; I don’t allow myself to start missing her or wishing for something different; I deal with the day to day crises and know that this is only going downhill. For weeks on end things had been so traumatic, with mom falling at least twice a week and other times more. These falls involved broken ribs, head lacerations, bruises and lots of anxiety, all of it culminating in the big fall a few weeks ago, that led to surgery on her elbow and mom finally going

into Hospice. She is now on “Comfort Care” at the same nursing home where she has lived for three years, after she fell and broke her hip. Week to week, day to day, I didn’t know what was coming. Every day there were updates and overwhelming information. The injuries sustained became routine for me, for us, and left me exhausted and shut down. You can’t cope if you are feeling each blow, so I didn’t.

So last week it was actually an unusual thing to feel something, to feel sad about my mom. When I arrived, she was totally not present it seemed. No acknowledgment of me being there, no responses at all. I couldn’t even get her to use the one word comments I’ve grown accustomed to. It was bleak and awful, because I really missed her. I felt lost and sad, and I wanted to talk with my mom.  I tried talking to her, tried sharing that her brother had written her a letter and wanted me to read it to her. She hasn’t heard anything from her brother in 12 years, so I was anxious about reading the letter to her. She had long given up on any contact there and I wasn’t sure how it might effect her, even if she is trapped in her silence.

I sat there growing more upset, waiting for some kind of response, until I found myself crying. I mean really crying. The “ugly cry” where your nose is running and you can’t really catch your breath and you know that the nurses who come in to see what’s happening and then leave silently are feeling bad for you.  I could not stop. I was talking to her, telling her how much I miss her and how much I wanted to talk to her. I was curled up on her bed, just wailing up against her, while my mom just sat there kicking one foot and moving her lips involuntarily.  You probably don’t need a photo to imagine this scene, it was raw and awful.

After about thirty minutes, I pulled myself together. I got some tissue and then washed my face. I looked like hell, but no one was watching, not even mom. I went back over to her, kissed the top of her head and said “well mom, I’m going to head out now. Love you.” As I turned to go, her hand shot out and grabbed mine and she said “Please don’t leave me. Stay.” It’s probably needless to say, but the water works started all over again. When this damn breaks, it floods the whole world. She said, “Are you crying because of me?”  I explained that I just miss her, and wish she didn’t have Huntington’s, and that she could just talk with me.  I felt like a little girl, who just wanted her mommy. So, she kicked her foot, moved her lips involuntarily, stared straight ahead, and she took my hand and held it while I cried some more.

Back to yesterday… when I heard that she was “agitated,” I got it in my head that maybe I could take her out to see the foliage. My sister had shared a haunting dream with me two days earlier, in which she took my mom to Astoria, OR and mom told her that she’d rather stay there alone, then return to the nursing home, before she dies. This was bothering me and I’d been thinking that it was a “sign”  that getting mom out might be warranted.  I believe in signs. The sun was bright and it seemed like a perfect day, aside from the crazy list of things the kids would be needing from about 5-7, and my writing group.

Mom has always loved trees, as a girl she painted, and that was her favorite subject, and going to see the foliage in New England was her favorite thing in the Fall, something I share with her. She hasn’t been out since her surgery, so I called to make sure this was even possible. When I arrived, she was still in a pajama top and hooked up to oxygen and all kinds of other things. It was daunting at the least. As I passed her (“Hi mom”) to go get her jacket, she stated clear as can be “Hi Dawn.”  What! I came back and looked at her and she looked likes she often does: not really there. “Hey mom, how would you like to run away for a little while?” She smiled, “Let’s run away.”

After a trying effort to get her in the car, we were soon driving along Lakeway toward Lake Whatcom. The trees along there were spectacular!  She can’t turn her head easily, but as I pointed out the the bright colors, she was happy. When we reached the lake, I turned up a winding road that leads out to Sudden Valley, through the woods. I had only been up the road once, myself. Suddenly, mom started talking but it sounded like complete gibberish. I felt a jolt of alarm, sure that she had finally become incoherent. “What mom?” She repeated the long string of tangled sounds. I told her that I couldn’t understand her and she replied, very clearly: “I’m talking about the lake Dawn. It’s on the right, it’s on the left, it’s on the right again. The road twists and turns, and there it is again.”  I felt like Luke with Yoda; the road twists and turns and there it is again.

We drove out to Sudden Valley, another place I’ve never been (for the record, very strange place). I had quiet music playing, the kind mom likes. When Anoushka Shankar came on, she closed her eyes and said “I like this.” As we followed the road, we found a beautiful, little lake tucked in the trees. I pulled the car over and turned off the engine. Peter, Paul and Mary’s September came on. It is a beautiful song about measuring the years in Septembers; mom’s birthday is September 16th. I couldn’t help but tear up, as their beautiful harmonies sang and the wind rippled the water, sitting alone in the woods with my mother. She turned her head and just stared at the water for so long that I thought maybe she was just zoned out again. I finally said, “what are you thinking mom?” She turned to me and answered “I’m thinking how beautiful this is. I’m glad we ran away.” And then she turned back to watch the water.

As we drove home we stopped once along a busy stretch of Lake Whatcom, where three deer were grazing in a yard. I pulled over as much as I could, but knew that other drivers were annoyed. Mom was so happy to see the deer that I just signaled them to pass, and ignored their impatient glares. If they saw the old woman with the oxygen on, maybe they got it, if not: too bad. When the Mama and the Papa’s California Dreamin’ came on, I pulled over so that we could watch the empty lake. It was once one of mom’s favorite songs, still one of mine. I asked if she remembered this song; she nodded yes. I sang out loud while she silently moved her lips and we sat watching the low sun on the water until the song was over.

When we returned to the nursing home, she could not move her legs to get out of the car. I had to lift her and carry her to the waiting wheel chair. When we came in, I was saying out loud to her that the foliage had been very nice and I was glad we went. A few nurses and aids passed and asked “did you have fun?” When I replied that we’d gone to see the foliage, several said “Oh, how nice.”  Admittedly, their enthusiasm seemed subdued. As I pushed mom down the hall, she said to me: “I don’t think they’re very impressed.” The sarcastic tone, the biting directness:  there was my mom!       “Well, I don’t give a damned what they think, mom; did you have a good time?”       “I did.”        “Then that’s all I care about.”

When I had her back in her special chair, fresh socks on, oxygen attached, wrapped with a blanket, I kissed her head and said “I love you mom.”    She looked up and said “I love you too.”   This may have been the last time my mom goes to see the foliage, but mom loved every minute, and that kicked ass.  Bite me Universe!

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About Dawn Quyle Landau

Mother, Writer, treasure hunter, aging red head, and sushi lover. This is my view on life, "Straight up, with a twist––" because life is too short to be subtle! Featured blogger for Huffington Post, and followed on Twitter by LeBron James– for reasons beyond my comprehension.
This entry was posted in Car trips, Daily Observations, Death, Honest observations on many things, Mothers, Musings, Natural beauty, Nature, Parenting, road trip, Women's issues and tagged , , , , , , . Bookmark the permalink.

20 Responses to Bite Me, Universe!

  1. Clauida says:

    Touching! It’s a good thing you didn’t wait to see the foliage because after today I think it will be blown away.

    Like

  2. Soapsuds says:

    Soooo beautiful!

    Like

  3. Elizabeth F. says:

    Loved this one D. I am so “there” right now. T’s dad fell a week ago and its been in and out of hospitals and nursing homes for a week — and it’s not clear where any of it is going next. Worry about it day by day, I guess. And it feels like its all squarely on my shoulders since everyone — and I mean everyone, including T — has issues to deal with in their lives (mostly work lives). A brother in law (not T’s brother — an “outlaw” like me married to a sib) carried the whole load yesterday. Thought I had a day “off” until his dad decided to get up and walk for the first time in days — got to the doorway of his nursing home room and finally fell. When we got there, the nurse said that he kept yelling out to everyone in the hallway and asking where they were going. I think he got up in an attempt to go check out all the fun he must be missing — like him to try to get up and join in. I’m glad you sprung your mom for a day. It seems so unfair to live to be 94 (my FIL’s age) and have it go this direction. I had been wondering if you’d write a Sandwich Generation post focusing on the older slices of bread. I really enjoyed the message today.

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    • Thanks Elizabeth! So glad you enjoyed the post and thanks for reading. Just sorry that we share this in common, as I wouldn’t wish it on anyone! My mom is only 68, so I wish she’d had another 26 years to be free of these struggles; however, it IS sad that your FIL has to go this route after such a long life! I have written several posts about this generation. One is in the links of this post, but was “The Middle… I hope” a few weeks ago; there was one on Sept. 16th my mom’s birthday and I think 1-2 others fairly recently. Frankly, I figured people might be getting tire of bleak posts about my mom and aging. Hang in there!

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  4. Valery says:

    Reading this makes me feel like I was in that car, too! Your writing is so clear, and with the perfect mix of “sweet & salty”. It’s almost like your mom’s ability to communicate is decreasing just as yours is skyrocketing. I hope you get to run away again soon!

    Like

  5. M.E. Sikes says:

    Your writing brought back memories of my Dad and how a smile or a coherent sentence changed my outlook on life, or he might say “this stinks” and make me laugh. Hospice was a walk in the park compared to all the years of downhill health and not-so-caring “caregivers”. I hope you are given at least a few more connection moments like this.

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  6. First of all: What a beautiful story, and it sounds like you gave your mom such a special time. It’s AMAZING how similar this sounds to my own mom with my grandmother, who used to live in a home, fall constantly, mumble gibberish, etc. And my mom would sometimes go to the home, jailbreak her and take her on long drives, often going to get a Big Mac (my Gram’s favorite) along the way. I remember these times, my mom remembers these times — and I know these are special memories for you as well, even though they are daunting. I wish you both healing and peace during these difficult days…

    Second: Thank you for the shout out. I’m honored to be among your favorite bloggers — and yes, The Universe does seem to like playing with us every once in a while, huh?

    Beautiful post…

    Mikalee

    Like

    • Thanks Mikalee; I appreciate the feedback. Healing and peace is hard right now, but I hope for that too. 🙂 Always enjoy your blog, and really gotten a kick out of your Universe stuff. Hilarious… forget about the Pepsi, that is just icing! I’m hoping to make ore of those days with my mom happen. Thanks for the encouragement and good thoughts!

      Dawn

      Like

  7. Brian says:

    You are a good person. Your Mom is lucky to have you!

    B

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  8. I’ve been reading more of your blog this morning, though I connect with your stories so well that I think I’ll have to pace myself so as not to have all my emotions bubble over! it’s amazing to me that you can put all of those feelings into words that relate so well to what HD families go through. You don’t sugarcoat your writing, and it’s comforting to me to read these things and know I’m not alone in having some those same thoughts. There’s something about HD, and I’m not sure if you’ve experienced it, but people seem to forget about you, avoid you, even abandon you. My Mom’s family is riddled with HD, and so many of the loved ones that have suffered from it, have been put into a nursing home and rarely thought about. My Mom’s own Mother, hasn’t bothered to visit her since she’s been in the nursing home. I know that she lost her husband to HD, and that watching your only child die of the same disease, would make you want to run far far away, but she’s still your daughter! Selfishly speaking, I feel abandoned by her too. She’s the only person we know who has lived through the entire process, and yet she left us all alone to go through the transition of moving Lee to a nursing home. I feel like every minute with Lee is a blessing, especially the moments when you know she hears and understands everything you say to her. For the longest time my life has revolved around questions like “will this be her last Christmas at home”…”will she be able to attend my wedding”…

    If nothing else, HD teaches people to be more compassionate, patient, and to to appreciate the small things in life we all take for granted. Some of my biggest regrets are getting angry with my Mom b/c of HD. The times when she would get up out of her chair without asking for assistance and then fall. It’s all just so unfair.

    The reality is, they are trapped in those bodies. When Lee’s father died of HD, (I was about 18 at the time), he hadn’t been able to talk or communicate for many years, he appeared to just be the shell of a person. Only twice did I see him connect with us in those later years…once when Lee left the nursing home, he through a kicking fit of epic proportions, and the next was the day he died. He may have looked like the shell of a person on the outside, but he waited until every one of his loved ones was in the room with him before he took his last breath. I remember thinking it was quite peaceful, that final moment.

    While, the little things they used to care about, like clothing, jewelry, etc. are now no big deal…Activities like going on your road trip, mean the world to them. I can’t imagine how you’re feeling at this moment, and please don’t feel obligated to reply, as I know you are on a hard part of your journey, but sincere thanks for your honesty in this blog.

    Like

    • Once again, thank you so much for taking the time to read my posts and respond. I can’t imagine having my mother in the nursing home at 46, such a very young age! You remind me to be grateful for the extra years we had with her; thanks for that. This is so often a young person’s disease and our family lost track of that in watching mother and grandmother get it later in life. None the less,the loss is painful and alienating. Yes, I do feel abandoned at times. It has been strange to see so many family members who don’t have HD forget about my Mom (until the very end) and not really ask me how she is doing, or how I am doing facing this. Very painful and has impacted many of my family relationships. I have come to realize that many of my family ties were based on pretense, and not the unconditional love I believed at the time. That said, I’m grateful for the family, friends and now strangers, who have been there through these hardest times. Thanks for your supportive words and my thoughts to you and your family as you face a similar journey.

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  9. What a beautiful thing you did x

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  10. Reblogged this on The Huntington's Chronicles and commented:

    A day I will remember and treasure forever. It was such a sweet day, amidst all the loss and difficulty.

    Like

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