Hospice/Caregiver: A day in the life!

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Nothing big to update today! Just wanted to give you a visual of what hospice is these days, for Vanessa, and share some little moments from this past week. :)

Three Vanessas: Circa 1984 in the photo on the table (she's on left), in 2005 in the engagement photo on the wall (she's on the left again :P), and 2012 in the chair. :)

(This is a fairly casual and picture-heavy post – hopefully a nice balance to all the words and heaviness of our last update, ha!)

This is how we’ve been addressing caregiving V, while also still keeping up (to some extent!) with our work and home lives: I’ve been working remotely from Vanessa’s house twice a week. Two other days, Mom goes over to spend the day with Vanessa. For the remaining work day of the week, Mom is there in the morning and Dad comes in the afternoon. Christina comes into town for a week at a time, so those weeks she is there all week too. Then throughout the week, Billy’s family helps out with an hour or two here and there that V is ok with. Billy, of course, is V’s main man in evenings and on the weekends and he takes time off work frequently for appoints and such, too. Needless to say, it’s quite the tag-team effort. :)

Here’s a bit more on how my “Vanessa days” go!

On my days at V’s house, Mom has to get to my house (to watch the kids) around 6, so I can go over to V & B’s house before 7, so Billy can finally leave to get to his work. Waking up at 5 to make this all happen makes for an early morning!

Mom with oatmeal

Not-quite-awake-yet Mom, making her morning mug of tea and getting oatmeal ready for the kiddos in my kitchen. You're awesome, Mom!

Then once I get to V & B’s house (aah Billy I forgot to take a pic before you left, sorry!), some days Vanessa is already up and eating in the basement.

Vanessa's basement breakfast

V enjoying some cereal downstairs, and marking her calendar full of more mini-adventures to come.

Other days V gets up a little later in the morning. At the end of this week, Christina came into town so she was there with us, too!

V & J kitchen

Please ignore that I am creepily laying on Vanessa's back (that robe is SOFT; I can't help it!), and instead notice the AMAZING IKEA KITCHEN!

V & C breakfast

Christina and Vanessa eating breakfast while the sunlight streams in, ahhhh.



Green pill bottle

V's medicines are now conveniently delivered by mail through hospice... in these pretty green bottles.

Once we are through breakfast, the rest of the morning is boring. I work from in the living room while Vanessa watches TV downstairs, or works on her computer or sometimes comes and does other little projects in the same room too. I pretty much just work the same as if I were working from home at my own house, but I am also able to keep an ear out for V if she runs into any problems, and we can spend the extra time together taking little breaks throughout the day.

When Christina is in town she works from in the living room, too! It’s funny knocking out a lot of work side by side in silence, or even more so to listen to each other be our professional business women selves on our phones for work meetings…  while we sit there in our comfy clothes (ok, maybe jammies some days) and work at tray tables on loveseats with a puppy running around. :)

Our shared "office" - with sweeping views of Delhi all around! (And Reuben is sitting under V's chair, not to be too far from where all this action(?!) is...)

One recent morning a freaky bomb-raid sounding siren went off….  we finally realized it was the way-excessively-scary-sounding door bell, and welcomed in a beautiful and delicious edible arrangement sent from a good friend.

Edible arrangement

Pretty AND yum!

Early this week we went to Kroger to buy lots of yummy lunch fixins (thanks to another old friend for the Kroger gift card!), then made some delicious and healthy wraps for lunch. Other days we head out to eat at one of the local restaurants, or even the Kroger salad bar!

Later this week V had a dentist appointment, so that day Christina and I took an early lunch break to run that and some other errands with her.

Sitting in the waiting room, Christina and I came upon this article about brains and how complex and vital they are to our bodies; seemed appropriate!

Dentist appointment - check! V gives a thumbs-up to nice clean teeth and free sensitivity toothpaste samples...

...Then we head to the post office to mail the most recent "Cancer Card" order for Blustery Day Design. This is real small business glamour for you; no administrative assistants or private jets in our business model, ha!

One last stop for shampoo at Walgreens. We wonder why the fine for parking in a handicap space with no permit is $305 and not, say, $300 even? But we have V's pass, so we're good in any case!

Then the afternoons flow just like the mornings, working in the living room and chatting with Vaness between meetings and emails. V sometimes takes a nap in the afternoon too.

Each day, we try to have one goal of something to work on or finish, whether it’s find something to wear for the next “thing” out, make a list, finish a project, go through a pile, return an email, or make a phone call. On a good day we even accomplish a few different things!

At the end of his work day, Billy comes home to their house, and then I head back home to my house, to relieve Mom to head back to HER house. Whew!

So then I do hugs and dinner and baths and beds with these sweet boys

My kiddos / Vanessa's beloved nephews

then have a quick catch up conversation with my equally-sweet hubby.

Some down days I might then meet Mom, Christina (if she’s in town), Billy and Vanessa at the gym to work out. (Or not, when we’re too tired to go back out for the day, which is pretty often. :)

V feeling the burn!

Or on rarer nights, if she’s up for it, V & B may go all out and do something special in an evening – a dinner with friends, a concert, a movie. This past week V & B went to the Carolina Liar/The Fray/Kelly Clarkson concert, and Vanessa even got a picture with Carolina Liar – and a Live Sincerely sign!

Vanessa with Caroline Liar and Live Sincerely sign

Most nights though, it’s a quiet night at home. ;)  Then it’s finally to bed for all of us, ahhhhhhhhhh.

Making these days happen takes a lot of coordination between all us”caregivers”, but I would be remiss if I didn’t point out that it also takes a LOT of assistance from others as they pick up the slack in other areas. Jason is on kid duty a lot so I can spend this time with V, and David holds down the homefront while Christina spends entire weeks away. Our friends and families listen to us as we decompress and wrap our heads around this day by day. Our workplaces are also patient with reduced schedules and rearranged meetings and occasional dog barks in the background of calls. THANK YOU, all!

So, this is currently what hospice is for V! She’s certainly slower than she used to be and we have to do a lot of prep work to pull off things that otherwise are easy or simple… BUT she is still loving and living and thinking and laughing and DOING. Things take a lot more effort and time now, the same conversation might happen several times a day, and we may be venturing out aided by a wheelchair. We often have to remind Vanesss of what day it is, what thing we have to do that day, etc. However, I do think that Vanessa is right where she wants to be, and feeling pretty dang good considering what she is dealing with. She’s NOT, in any sense of the word, “giving up” on her life.

Vanessa is dying, it’s true, but she’s also LIVING, here and now and every moment. I am so grateful for the time we are getting to spend with her now.  Each day, each uneventful little conversation and errand and shared meal and trip, is so precious to me. And please know that ALL the wonderful “Live Sincerely” pictures and messages and cards and email do so much to buoy Vanessa along in an ocean of love and support. THANK YOU!!!!!!!!



  1. Darlene says:

    thanks for sharing this
    I am a Breast Cancer fighter!! I have stage 3a triple negative with clean margins. I am so glad when I stumble upon great sites like this – I found your site through Angelo – at mywifesfightwithbreastcancer on FB – I met him after Jennifer past away – there was a post on cnn.com about his photos and upcoming exhibit in NY. I got to go the day before to see his photos and loved everyone of them. I am a photographer and love black and white. his photos were so powerful.
    you and V rock

  2. MaryAnn Merendino says:

    Hi Vanessa, I love seeing these photos and sharing you days with you. :-) My parents and I were also at the exhibit Sunday, where my brother Angelo shared your story with me. Having spent many weekends in NYC with Jen & Ange, I share the love that your sisters and family have for you. I wish you joy, love, peace and strength, mostly I wish you love. Cordially & most sincerely, MaryAnn

  3. Nadia says:

    Dear Vanessa,
    Thank you for sharing your story…your story is real, honest, and beautiful…just like you…your story changes people, and forever you will have had an impact on the world…something we all strive for…thank you again…

  4. There is nothing like the bond of sisters and you are so lucky to have each other even for just today.

    V’s hospice is what I would want. I hope and pray she is doing well in a really tough place at such a young age.

    Her strength and honesty have inspired me to live sincerely beyond many other things I have learned in life.

    V…..I will never forget what you have taught me.


  5. Paula Mathews says:

    We went through 14 days of hospice with my mom and it was completely different than the photos and stories I read about you. I am loving that you are living sincerely and I say thank you for making such a beautiful blog! I took the pledge!

    Thank you and may the Lord Richly Bless You!

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