Being Tested

Tonight I am struggling to write.  I have stared at the screen for 5 minutes.  I have changed the title numerous times.  I am standing on the invisible fence, not sure which way to jump.  I can jump to one side and tell you that we are continuing to hope for the best as we enjoy every second we have with mom.  All of which is true.  Or I can be real and tell you how things have been the past few days.  I am torn because I know there are people who get hope from this blog, but there are others who want us to be honest and paint an accurate picture of how cancer can change lives.  I will do my best to be brutally honest while still allowing my mom the dignity of some privacy in her final days.

The truth of the matter is that my mom is not ready to die.  She has too much fight in her.  Although last week she was showing many signs that the end was imminently near, she has since experienced many additional changes.  Her breathing has stabilized somewhat.  She rarely complains of pain.  She went from being unable to eat or drink to asking for small meals and lots of water.  She went from laying in bed sleeping all the time to sometimes sitting in a chair and often talking with us.  All of those things sound great, but here is the catch.  Although her end of life symptoms have stabilized, other things have gotten worse.

The tumors in her brain have causes many of the behavior changes we are experiencing.  She has surges of energy but they are spent trying to get out of bed on legs that aren't stable enough to walk.  She talks a lot, but it is usually all night long and throughout most of the day and quite often she doesn't make any sense.  She is experiencing cranial pressure from the swelling in her brain.  It appears to be affecting her walking, talking, eyesight, and many other functions.  It is similar to caring for an Alzheimer's patient.  She usually knows who people are, if she is able to focus on the person.  She is still a great hugger and likes to give kisses.  If we tell her we love her, she tells us she loves us too.  Mom is still the loving, caring parent and friend that all of us have always know, but now she is losing her personal battle within her own body.

Mom started wheezing again last night.  The hospice nurse came to the house today and told us that it sounds as though mom's left lung is not really working at all and the part of her right lung that still works seems to have pneumonia in it.  After a call to Dr. Eaton to determine if an antibiotic is the right choice at this stage of the game, it was determined that any additional drugs would be inappropriate.  They are increasing the medicine which helps to relieve the swelling around her brain though.  We are hoping the boost in Deximethizone will help to provide her with a clearer mind.

It would certainly be easy for us to complain about the cards we have been dealt lately, from the 15 hour power outage this past weekend that prevented mom's oxygen machine from working, or the fact her hospice nurse has had back to back emergencies in her family so mom has had 5 different nurses in the past week.  It seems to be one thing after another lately but the caring friends we have in our lives are just as consistent as the recent roadblocks.  Many people have brought us food and it has been very helpful to feed the house full of relatives and caregivers on a daily basis.  Friends have brought cases of water, and Kleenex, and in the case of power outages... Lanterns to see, and fans to keep mom cooled down.  We know that we have the best support system possible.

I want to remind you how appreciative my family is for the caregivers in our lives and the wonderful friends who go out of their way to help us take care of the things we can't do on our own.  I have learned a lot about people throughout the past few weeks and I am grateful for the selfless angels around us.

Please continue to wrap us in your loving arms-
Amy

Emotional Week

This week has been physically and emotionally draining for all of us.  On Sunday mom made significant changes and we were all encouraged to come to the house so we could say our goodbyes.  Then Monday came... then Tuesday, etc, and here we are at Friday morning and we are still blessed with her presence.  Although much of her days are spent resting, she occasionally opens her eyes for a few moments and smiles or gives us little kisses.  Those moments are priceless to us.  We are very torn between wanting to have a few more of those special moments with mom, and wanting her to let go and be free from pain.

As a family we have experienced many different emotions this week.  We have also grown even stronger as a family when we sit down to deal with the tough stuff.  Friends and family members have been very supportive, as always.  Some of us haven't left the house since Sunday but we have special friends who have made sure we always have coffee in the mornings and food throughout the day.  Without them, I think it's likely we would forget to take care of ourselves the way we should.

During a good moment on Thursday she wanted to sit up for a few minutes. The sun was setting off of her bedroom balcony so we got her into her wheelchair and opened the blinds so she could sit with her dad and enjoy a special moment.  I have attached the photo above.  Moments like these are very special to everyone right now.

Thanks again for all of the prayers and well wishes for our family.  If you are sending prayers, please pray for strength, closure, and an abundance of love.

Amy

It's Time

Over the past few days things have changed drastically with my mom.  Her coughing got really bad on Friday and that made her breathing extremely labored.  We have promised her all along that when she gets to the point where she feels like she is drowning or suffocating we will increase her medicine so she doesn't know its happening.  That time has come.  As of Friday afternoon hospice increased her medicine so she is heavily medicated and rarely coughs.  She spends the majority of her time sleeping.

Over the past few days she has received short visits from friends and family.  I think the visits have allowed people to have closure at a time when mom is still fairly lucid.  She has expressed her fears, some of which we could resolve simply with our reassurances that things will be fine and her children will be loved.  She seems to have a hard time when she thinks about unfinished business.  She expressed sadness that she won't be around to hold Jake and Megan's baby when it arrives, but everyone has assured her that they will be the best fill-in grandparents around.

There aren't words to explain the atmosphere in mom's house.  These walls are filled with sadness, an abundance of love, and the best caregivers a person could hope for.  Two friends have brought us food to get us through the day so nobody has to leave the house (thank you Lervick and Reid families).  We continue to search for strength at this time of need, but we are filled with hope that mom seems very much at peace with the stage she is at.

As for all of you, please know that my family is very appreciative of the kind words and loving prayers that you continue to send our way.

With love-
Amy

Doreen Update

Things continue to change with my mom.  She meets with her hospice team a few days a week and she really seems to like the ladies who are assigned to her.  They do all they can to keep her comfortable.  She is on a number of pain medicines and anti-anxiety drugs which seem to help when she starts coughing.  Her coughing attacks can happen at any time but they seem to be worse in the middle of the night... often waking up every two hours to the feeling of being suffocated.  It is scary for her, and we all hate to see how it effects her body when she is struggling to breathe.  The reality is, her breathing is very limited these days and she often needs to be medicated just to recover from the painful coughing attacks.  Her comfort, and happiness, is the most important thing for all of us.

We will continue to live life to the fullest and enjoy each day, but we are certainly living with a purpose more than ever.  We will try to do a better job of updating the blog, but you can always call her house if you want to get a quick update on her status.

Thank you for your well wishes-
Amy

On Wednesday we had a special ceremony to celebrate Amy's promotion from Captain to Major. It was an honor to get to be a part of it. Ann McCune had the honors to make it happen. Thank you Ann. It was very special.

Over the past week I've been meeting with hospice nurses and other hospice staff and they are so wonderful.

School started for kids all over Washington this week. Jake has kids in class already, Angie starts with kids next week.

Keep dreaming big,
Doreen