Giving Thanks

I could spend all night listing what I am thankful for, but this picture pretty much sums it up (or roughly one fifth of it up): FAMILY.

The above is from our second celebration of the day at my aunt and uncle's house in Canton, where Mom housed her second full plate of Thanksgiving dinner. Mom, Dad, Gwennie and myself had our first plate of turkey delight at McLean, and I was pretty sure that Mom would be too tired to venture out, but I was quickly corrected.

After a few days of feeling a bit under the weather, it was a vision to see Mom energetic and hungry. She'd been dealing with some new pain in her lower back and legs, which was difficult to treat without making her feel too groggy. She's also experienced some nausea and increased fatigue, some of which may be a product of over-working herself, or some neurological changes, so her team is watching her closely and working hard to ensure her symptoms are well managed.

Today was a wonderful day. One of the best Thanksgivings in a long time. The last two we've been a week before or a week after major surgery, so to just relax and enjoy time with family was a treat. My food coma keeps me from mustering up further creativity, but from our family to yours, we hope you had a wonderful holiday!

Best of Intentions

Mom continues to improve with each day. We're now almost three weeks out from when she would have had another cycle of chemotherapy, so her body is clearly using this time to rebuild and replenish. Although we're not closely on top of what her cancer is doing, the plan of action continues to be day by day, capitalizing on what energy she has and allowing for rest when she wants.

Finding balance seems to be something I discuss a lot with regards to my mother, and even myself at times, but there is new meaning behind the concept today and I'm asking for you all to help.

When someone we love is sick, we march in to action, with food, cards, prayer, love, advice, answers, music, research, theories, etc. Each of us react in different ways. Mom has been benefiting from all the kindness and generosity of her friends and family for so long now, I fully believe it is why she is flourishing now.

Going forward, I'd like to make a suggestion that we all seriously consider, myself included! My mother is feeling well, she is conducting business, managing her schedule, taking charge of her life. She does not need anyone else telling her what to do! Because she is in a long-term care facility instead of her own home, she is realizing how easily and frequently people "pop in," but end up staying for 20 minutes! Might not seem like a huge deal to you or I, because we can retreat to our own home, close the door, and not let anyone in. But at McLean, she often feels that people don't respect her space as much because they're accustomed to dealing with a less energetic/aware/productive clientele. Mom has had to really say to the staff, "if I need you, I will call you, otherwise, please respect my quiet time." And I think the rest of us need to do the same.

What she's expressed is that she really enjoys scheduled visits, one a day. And if when you visit, you'd like to bring something, how about lunch? She is so enjoying nutritious, enriching, delicious meals. These days she is less inclined towards sweet treats, and is looking to fill her body with all the wholesome nourishment she can get. It doesn't even need to be a lot! She shares a communal refrigerator with other residents and when huge Tupperware dishes roll in, Gwennie and I are full throttle-fridge managers. Her room is small and cozy, so I hope everyone will understand that right now, all we need you to bring is yourselves, a smile, maybe a nutritious treat, and a listening ear.

This is a hard post to write, because I too am guilty of calling my mother and talking her ear off for a half hour, saying "you should be taking it easier, spend less time doing things, relax more, tell people to stop coming by, blah blah blah blah blah." What have I just done? Taken up a half hour of her energy to satisfy my inner-control freak daughter because I love her and just want to help.

Moral of the story? Respect her space and time just like you would anyone else's. Unless you're absolutely sure it will cure cancer, please try to keep elixirs, healers, meditations, teas, for your own enjoyment. Food is always good. Small portions, delicious, and nutritious. Above and beyond all, thank you for the outpouring of love, and know that this is purely my attempt to rein in the incredible gestures of one outstanding community.

Farewell Old Friend

No no, not Mom, she's still kicking. More than you and I combined actually, but enough about her.

This post is dedicated to the passing of our trusty steed, the Pathfinder. Many of you have borrowed it to move children to college, or to transport a dog to the vet. Maybe you were there to pick Gwennie or I up when it died on the side of the road (multiple times). At any rate, it's been there for us, delivering us to boarding school, traveling to friends both near and far. Mom and I visited 10 colleges in 5 days in that baby. There's a strong history of taco bell drive throughs embedded in those seats.

I recently re-inherited the 1997 boat/car from my sister, and when I went to get the oil changed, was told to "save my money." 'Nuff said. It is being donated next week to be used for parts and put to pasture. Sigh.

This week I got a new car, but I'm not the only one taking to the road.

WATCH OUT! Mom has a new motorized wheelchair. I kid you not. She said she feels like she's "been given a new car too." Gwennie took video footage of the maiden voyage, so stay tuned for that.

Frankly, having her confined to a non-motorized wheelchair may have been a smarter choice. At least then we could physically rein her in (mentally, forget it). Now she's all over the place. Today she rented out the art room to hold a three hour business meeting. She is no joke. She exhausts me. I need to take a nap after visiting my mother in hospice. What is wrong with this picture?

Nothing. Absolutely nothing. She is happy, eating, flourishing, loving life sans chemotherapy as she should be.

Extraordinary, Every Day.

For those who are not familiar with my mother's business, the title of this post is not only her company's motto, but the heart, soul, and nourishment of what I have come to see in my mother, especially of late.

She raised me saying "garbage in, garbage out," which was generally in reference to my choice to watch Beverly Hills 90210 instead of Reading Rainbow. However this is applicable to much more than one's choices in television viewing, specifically the company with which we surround ourselves.

I've run out of words to express the kindness bestowed on my mother, but truly believe that it is nothing short of a reflection of who she is as a human being. A perpetual people pleaser, almost to a fault, she rarely acts without thinking of how it will impact those around her. Even today, she pressed the call light to ask for help, and prefaced by saying, "I don't want to inconvenience you, but...."

You have all stepped up to bat in so many ways, but two stories in particular I had to share:

Not too long ago, Mom's good friend Naomi Lerner gifted a matching earring and necklace set that she not only custom made for my mother, but named after her as well!

"Liz It Is" has been a huge success. It has been selling like hot cakes, and we recently learned there was a bidding war on the last available set at a fundraiser.

When Mom wears it she glows. For someone who is known for never leaving the house without her Mulberry lip gloss and a scarf (she single-handily started the craze), she is now most often without make-up, sporting a pastel terrycloth head cap. It is so much more than a tribute, it gives her a piece of familiarity back, and that is an indescribable gift.

I was recently sent a song called "Keep Me In You Heart," by Warren Zevon, who wrote his album The Wind shortly after being diagnosed with cancer. The sender was my childhood best friend's older brother.

Mind you, this is a boy (okay fine, now man) who I used to tell on regularly. He made fun of me for crying, inflicted many bruises on me, and taught me an extensive library of profanities at an impressively young age. None of which matters, less to say how in this experience, where emotions peel off like layers, people come in and our of our lives in the most surprising and touching ways. He put it better than I ever could:

"Whether abrupt or protracted, when a tragedy unfolds itself into a life, as it has clearly has in your case, I imagine that all of the people involved hear a lot of wonderful things from a lot of wonderful people and a lot of strange things from a lot of strange people and a lot of things in between. With all of the tasks immediately at hand, maybe it’s hard to separate all of the wonderful sentiments and kind words from the crazy rambling and stammering people seem to do in these cases, the true friends from the clingy weirdos who show up and maybe make only themselves feel a little happier or more comfortable for a moment."

This part of life is lived differently by everyone. It is awkward and scary. I don't even know what I am saying or doing half of the time. So to all of you, wonderful people and clingy weirdos alike, the roll you play in this, through cards, comments, prayer, food, thought, art, or song, is essential in our process. We are so lucky to have you.

People Please, One at a Time

There should be a red carpet outside my mother's room. She needs a social secretary. This is insanity. The woman is practically booked through Thanksgiving.

Mom has been at McLean for just 10 days now, and although it has not been without a hiccup here and there, her strength improves daily, her appetite is intimidating, and she is even conducting and business meetings! The woman is out of control.

It has taken a while to adjust to her new surroundings, especially learning the system, but the staff is very eager to get to know Mom as well and each day is an improvement.

The greatest of all, is perhaps, the bedpan situation. If this is TMI (too much information), you're reading the wrong blog. Since Mom's last hospitalization, the ordeal of getting to and from the commode can be a painful hassle, so it has been bedpan city. Go ahead and grab plastic mixing bowl and sit on it for 5 minutes 5 times a day and see how good your butt feels. Exactly.

Mom's good friend Tom V. got wind of this situation and showed up the next day with a variety of bedpans from which to choose. She went with a lovely wide-brimmed model. It never ceases to amaze us to what lengths friends and family will go to in order to make Mom's life just a little bit better.

As for the traffic, Mom has taken control by scheduling one social visit a day. So if you have emailed or called and not heard back, fret not, you will. One a day seems to be the magic number, because it allows to enjoy her time with people but not spread herself too thin. Believe it or not, I even had to pencil myself in on Sunday. True story.

Extreme Room Makeover

Some pictures of Mom's room before, and some of our progress thus far...

Some of Mom's wonderful friends got together and sent her a beautiful collection of Mums for her patio. Also included is picture of her view from her bedroom window, and Miss Gwennie Gwen sitting below the start of our little in-house gallery.

Liver and Onions

You know you're eating in a nursing home dining room when one of the entrees offered is liver and onions. My aunt and uncle came to visit today, and we decided to try lunch in the dining room for the first time. It is a great system actually, you just make a reservation for however many guests are joining you, and voila! It was a nice change of pace to Mom's normal daily routine, and the staff was lovely. The food is nothing to write home about, but that's coming from very intense foodies.

We had one major incident today that really took it out of my mother, and I think Gwennie and I as well. Since Mom's strength is improving little by little, we pushed her to take a few steps with the walker between getting out of bed to the wheelchair. She did really well until it came to sitting down. Instead of waiting for Gwennie and I to lower her down in the chair slowly, she slammed straight down on the chair which sent shooting pain through her entire spine. It was a few minutes of severe agony and pure fear for my mother. Initially she was just petrified that she'd done major damage, but she took some deep breaths, and the nurse got her pain medication immediately. She required some additional pain mediation through the day, but seemed to be more comfortable by mid afternoon. She has limited control due to muscle deconditioning, which combined with some disease they've seen in her bones on MRI's, her bones are quite fragile. It is no wonder she was in such severe pain.

Our greatest fear is that she get too scared to move and doesn't push herself to walk and transfer from the bed to the chair often, but I worked hard to assure her that wasn't the way it was supposed to happen! It is essential that we keep her moving to promote good circulation and healing of the wounds on her bottom and her right leg.

When she sits up too long, the edema in her lower extremities gets so severe that it's pitting, meaning if you pressed your finger on her leg, an imprint remains for a few seconds. This occurs when fluid shifts out of the cells and collects in the tissue. It can be a result of many different things, but we're not as concerned as to why it is happening as to how we can prevent complications from edema. For example, edema can inhibit circulation, which prevents efficient wound healing. So for a few hours a day, we try to keep her legs elevated, while also balancing time with her sitting up in her chair to take the pressure off her back.

It always comes back to finding the balance...

Emotionally, Mom cycles up and down from minute to minute. For years she's been relying on physicians and nurses to make recommendations and tell her what to do to fight for her life, and now there is a "do what you want to do" attitude which has been hard for her to adjust to. It is easily misunderstood as people giving up on her, as opposed to just wanting her to be happy. Like most people, she wants to remain in as much control of her life as she can, and in talking with her team, they were really receptive to this. They understand that Mom appreciates recommendations and suggestions on how to promote her health, so again, we're back to finding the balance.

What is bringing a smile to her face is all the mail she's gotten since I posted her address to the blog! Wow- you all work fast.

Mom visiting with Marilyn R. and Gwennie

by the fireplace.

Uncle Bud and Aunt Missy visiting for lunch in the dining room.

Speaking of visitors, Mom is loving them, but requests that people don't just drop by. Not for her, but more out of respect for your time! She often has scheduled appointments during her day, so if you'd like to visit, it is best to send her an email or give her or I a call to set something up. That way you don't risk showing up while she's busy!

Miss Party Pants

It is no surprise that Mom's room is flooded with people at all hours of the day. Certainly, in comparison to her neighbors who are mostly greater than age 90 and are more than just a little confused, she is a welcome change from the traditional pattern of residents. In just a few days, she's formed solid relationships with the nurses and CNA (certified nursing assistants). It hasn't all been completely without difficulty though. Adjusting to a new environment and learning the system has been frustrating at times.

At St. Francis, her nurse would have 4 patients max, but at McLean, there is one nurse assigned to a 20 bed unit. But there are between 8 and 10 CNA's because the bulk of the work to be done with these residents can be done by a CNA. The nurses oversee care, pass medications, change bandages, etc., but the CNA's are really at the heart and soul of the hands-on care. I remember my days as a CNA, and the work is not easy: lots of work, very little glory, but the CNA's we've encountered thus far have been wonderful and patient with my mother. I've been particularly impressed at how willing they are to take extra time to "learn" her and accommodate her needs rather than just do things they way they might with everyone else.

The hospice team who oversees her entire plan of care continues to impress us left and right. We had one major snafu over the weekend, where Mom was up to her chair in the middle of the room, needed to get back to bed, and realized her call light was no where in reach. Fortunately, she had her cell phone with her, was able to call me, and I was able to call the nurse's desk and alert them that she needed help. Even though we were able to get her the help she needed, this was obviously very concerning to all of us. The response by the team has been appropriate in that they took it to the director of nursing and were incredibly apologetic, but kinks in the system remain. Fortunately the team is working on making this the best possible experience for her.

On our end, having Mom in a safe environment with a staff to call on at all times has really puts our mind at ease. I feel my stomach slowly beginning to relax, and today I was actually able to sit with Mom while she had dinner, and talk for almost two hours. Just talk. About nothing in particular. It was amazing. I can't remember the last time I've been able to just be with her, without running through a check list in the back of my brain. Don't get me wrong, I spent the first 5 hours of our visit hanging paintings and making lists for her, but we're getting there...

I've found this process is about balance. Taking care of ourselves so we can take care of Mom.