Today was a good day

Spoke with Mom tonight. Sounds like she got some rest over the weekend and that people have backed off on the visiting a bit. She’s still tired, but she isn’t shy about telling people when she’s had enough, which is good.

It sounds like the 6-8 hours are really working well for her. She can pace herself during the day and then be ready for visits in the evening. She’s still asking Kate to bring her milkshakes and coffee, so the appetite is still there. At this point whatever mom wants, she gets.

Hopefully we get a few uneventful days in a row so she can get into a routine.

I’ll be posting some video clips later of Mom and Maeve playing on the playground Saturday. More to come.

Trains planes and Automobiles - recovery day.

It was a very long flight back to San Francisco last night. We didn't get home until 4am (eastern) so we're all exhausted and using today to recover for the week ahead.

Yesterday was likely our last with Mom. Mike's sister Kathleen and her family came down Friday night to visit with mom. They drove nine hours (each way) to visit for mom for just an hour or so. Mark is a minister and had to preach this morning so they had to drive all the way back to Cape Vincent, NY (on the Canadian Border). It was incredibly gracious and a testament to how close mom has become with the McGuire clan.

Katie, Maeve, Andy and I spent some quality time with mom after Mark and Kathleen left, taking a field trip to the Monastery to visit with the Benedictines and to watch Maeve scale the rock wall on the playground (which she calls diamonds). The visit did wonders for Mom's morale. She got to visit with her friends on familiar ground, and to visit a place that was at the heart of Mom and Mike's relationship.

Mom visited the shrine to St. Benedict that Mike refinished right before he became ill. The shrine was built in 1930 and features a gorgeous mosaic of Benedict rendered in an eastern style. The Shrine had fallen into disuse and disrepair over the years. Mike decided to take it on himself to rebuilda gorgeous set of massive oaken doors for the shrine.

The doors stand about 12 feet high and span at least 8-10 feet. Aside from needing a fresh coat of finish, the doors look as good as the day Mike hung them.

Sr. Cecelia, the Prioress at the Monastery told me that Mike's work on the shrine became the catalyst for the "Place of Peace" - a new meditation space, open to all on the Monastery grounds. The P.O.P features a labyrinth, teaching gardens, and a pair of converted grain silos that serve as a wonderful sanctuary from the epic sprawl of the Virginia suburbs. It all started with one guy who decided to use his time and talent to make a place better than he found it, and ended in a place where the community can come and escape traffic, cell phones, and the ubiquitous mcmansions that made me flee NOVA more than ten years ago. It reminded me of the loaves and the fishes - Its amazing how small graces snowball into miracles.

It was great for Mom to get out and do some normal stuff for a few hours, but the heat, humidity and activity wore us all out pretty quickly.

Once we got her back to her room we settled in and took care of some last minute details. We were trying to stall for time. It was time to say goodbye. Katie and Maeve said goodbye – it was hard for me to watch, knowing it was going to be the last time Mom would see her granddaughter. My mind was racing with all the things mom was going to miss. I could tell mom was thinking the same thing, but she took it with grace and acceptance.

Then it came time for me to say my goodbyes. Katie and Andy gave me the room so I could say mine privately. I'm incredibly grateful I had to opportunity to say them while mom is lucid and conscious. I know she's at peace with what is happening to her. I know she isn't in pain, and she's comfortable.

I hope to return before mom passes, but there are no guarantees with this sort of thing, and knowing that nothing has been left unsaid or unfinished is a consolation.

People keep telling me how tragic mom's life has been. They point to the low points, Mike's illness, the house in New York languishing on the market, estrangements with friends and family, etc. I disagree.

A tragic life is a life unfinished; loves and ideas left unspoken, risks never taken, an adherence to well traveled paths. None of this describes mom. Mom's crammed more life into 59 years than most do in 80. So while I'm very sad to loose her, she's at peace and has no regrets. She says she's ready to go, and I believe her.

Update - Eileen's Condition/visitation

After a very, very long day - I'm emailing family and friends to clarify a few things.

1) Mom's death is not "imminent" - her vitals are fine. She is dying, but we have no clear time-line for how this will go. She's exhausted from a nearly constant stream of visitors. She's had a hell of a week between moving from Raleigh, adjusting to the nursing home, registering for hospice and saying goodbye for the last time to her only grandchild.

2) Call the nursing home before visiting, see if she's open to taking visitors.

2) No one visits mom until next week. She needs to rest.

3) Mom's has asked that we limit her visits to week nights between 6-8, and to no longer than 10-15 minutes.

4) Check the blog for updates on her condition. Its as simple as clicking on this link http://www.eileenmcguire.blogspot.com. Andy and I are unable to keep up with the deluge of email and phone calls. The blog will have the most up to date information.

5) We are not preventing anyone from visiting. We are asking that you respect the times we're setting for visitation. If the hours, time limits or other constraints we've set don't work for you, I invite you to revisit your priorities, or reexamine your motivations for visiting.

6) The visit should be pleasant and brief. She's dying. She doesn't need to be burdened with making this easier for anyone else, and doesn't owe anyone "closure".

7) No groups larger than three. No children.

8) No gifts or flowers. She doesn't have room. When you call ahead, ask her if she wants anything - a milkshake, whatever. There are no dietary restrictions on her. Its all about making her comfortable.

9) You can call Andy, myself or Kate Kimener if you need clarification on anything here.

10) When mom tells us she's had enough, the visits are done, and we'll leave those instructions with the nursing facility. Check the blog before coming.

11) None of these rules apply to Gram.

I'm sorry if this is blunt. Mom bares no ill-will to anyone. She's tired, and is a peace with what is happening to her. Andy and I have been entrusted with safeguarding her wishes, whether we agree with them or not. Mom makes the rules. We make sure they're carried out. If we are terse, or stonewall well intentioned gestures that are made out of love, please understand that we're not doing this out of spite or anger. Our only loyalty is to mom and her wishes.

I'm sorry if I've missed anyone with this email. It will be posted to the blog, and can be forwarded to whoever I may have missed.

Trip

Today has been a tough day.

Its a cold, windy overcast day here in Virginia, and somehow our moods seems to fit the weather.  

We’re all tired, and its been an emotional day.

We met with hospice this morning.  Apparently patients have to be admitted to hospice care, so we had mom’s interview this morning. It was sort of a hot and cold experience. The hospice nurse at the facility is awesome (her name is Betty – I know “Nurse Betty” right?!). She was able to walk Andy and I through what’s to come.  The admitting nurse who handles the paperwork is a different story. She wasn’t familiar with mom’s chart and we had to take a timeout to figure things out, she was also half an hour late. I’ve got nothing against being a little disorganized, but there are some situations where you should have your stuff together.

Part of the hospice process is giving the dying “permission” to die. I’ve heard of this in the past, but I was surprised that I had to tell mom its ok for her to go, I thought it was obvious.

I was unprepared for how difficult it was to tell her that its ok for her to die, that she doesn’t have to hold on for Andy and I. She’s done a good job as a mom, and that we’ll be here to take care of each other.  I was just as unprepared for how grateful she would be to hear it. Its hard for my mom to be vulnerable, even with Andy and I. She’s still mom and we’re still her boys. She’s been trying to protect us, and telling her that its ok to go has taken that burden away from her.

Nurse Betty (If you’re reading this Betty – sorry in advance, I think that one is going to stick) told us something about dying. That the superficial layers of the dying person’s personality are slowly stripped away as they become unburdened by their traditional roles – caretaker, boss, extrovert, life of the party – leaving the most essential parts – daughter, sister, mother. She’s slowly withdrawing from the world, and all we can do is wave from the shore and cheer her along.  

Which brings me to a request from Andy and I. If you plan on visiting mom, do it for the right reasons. If you’re coming because you need closure, because you need to be consoled, because you need to tell her something, put it in a note and send it to the blog.  Don’t burden her with those things.  

On the other hand, if you’re coming to celebrate her life, if you’re coming to encourage her and give her the love, encouragement and strength she’s going to need on this journey then please come and visit with her briefly. If Andy and I can give her permission, then you can too.

To simplify the visiting logistics, we’re setting up some visiting hours for Mom 6-8pm Monday to Thursday. We’re holding weekends for close family and quiet time for Mom. If you can’t make these hours, please give Andy and I some advanced notice so we can let Mom know when you’re coming. The realities of nursing home life make “popping in” really hit or miss for mom and her care.

Thanks again for everyone’s support and kind messages of encouragement. Its been overwhelming, and Mom enjoys hearing them in the evening.

Slow Morning

Andy and I dropped by to see Mom this morning and took her for a roll around the parking lot.  It was a gorgeous, crisp autumn morning and Mom enjoyed being out in the sun. The facility has been really nice, but its been an adjustment for her. As you all know she’s fiercely independent, so letting the LPNs help her has been ...”challenging”.

Her room is nice, but they’re looking to change her room so she can get a window seat and a new roommate. Her current roommate is not what you would call a “communicator”, preferring to let her bowels do her talking for her. Andy and I have nick-named her “Downtown Doo Doo Brown”, and have assured mom we’re going to get her a fan and some pine tree air fresheners. Its good to see Mom’s sense of humor is still intact. We hope to get her moved in the next day or so.

A few requests from mom for those visiting. She doesn’t have a lot of room for flowers in her room – so while appreciated, she doesn’t have anyplace to keep them right now.

Also the facility is smoke free – she can’t even light up outside the building on the property. So if you’re planning on visiting bring your walking shoes and a pack of smokes (she likes ultralight 100s – either Basic Brand, Merit or Marlboro). Don’t forget a light. Mom’s Quote of the Day: “What the hell? no harm in it now, right?”

Message from Liz

TRIP.....FOLLOWING IS A MESSAGE FOR YOUR MOM, WHICH I HOPE YOU CAN PASS ON TO HER;

EILEEN...YOU HAVE BROUGHT SUCH LIGHT AND LOVE TO YOUR FRIENDS AND FAMILY.  NOW  
 
THE FAITH AND PRAYERS THAT HAVE SUSTAINED YOU IN THIS LIFE TRANSPORT YOU TO  
 
PARADISE, WHERE MIKE IS ALREADY WAITING.     
 
 WITH LOVE FROM YOUR FRIEND LIZ
--

Mornings visits are better.

Mom will be getting settled in today (once she and Andy arrive).  Just an FYI for visitors – her energy is better in the mornings, with a peak around Mid-morning. She gets tired and often naps midday-early afternoon with a rally in the late afternoon. I would ask that no one visit after 6:30 in the evenings – she’s usually done for the day by then. If you can’t make any other time, please talk to me or Andy first – my cell is (408)-218-9329 Andy is (610) 662-8658.
--

Mom arrives today

Andy and Mom are driving up from Raleigh today. We FINALLY got things
sorted with the nursing home yesterday. She'll be staying at
Gainesville Health and Rehab at 7501 Heritage Hunt Drive in
Gainesville, VA. It's in the Heritage Hunt Development, just off Route
29 North on the Gainesville exit (43) for i66.

Sent from my phone

Welcome

This blog is intended as a place to keep tabs on my Mom  (Eileen McGuire) while she battles terminal cancer. 

Today is our last day in Raleigh. Tomorrow, I'm driving Mom to a skilled nursing facility in Northern Virginia where she can be closer to friends and family. I'll post more information when we're ready to make it available. 

A few ground rules for the blog: 

• The blog is intended for friends and family of Eileen. 
• You will need to be registered to comment or post. 
  
• My brother Andy and I will be monitoring and posting to the blog, and will relay well wishes to mom posted here.
• We will also monitor email, sent to this blog or mom's private account. We may not respond, but we'll deliver messages to her.

A few ground rules from Mom.

• Mom's phones are forwarded to my cell phone. I'm screening calls.
• Please clear any visits with Andy or I before going to see Mom. She's weak and needs her rest. 
• Cards, Flowers, Etc are great. Avoid food, her appetite isn't good.
• Please keep visits brief 20 minutes is about right. Mom loves seeing people, but it saps her strength quickly.
• For Estate matters please contact me (Trip), I have power of attorney and I'm executor for the estate. 
• Andy and I are both empowered to make decisions with regard to Mom's medical conditions and quality of life.