On Being Weary

My sister Gail is coming to be with me for this final leg of the journey and today I know how timely her presence will be.  She wants to be with me as we say goodbye to Mom and I've struggled to say when that should be.  I mean, how can I predict?  I can't, but on Saturday morning (while praying about what to tell her) I had a strong sense from God that the time was right.  I actually got the image of Aaron holding up the arms of Moses and so I asked her to come.  She's coming on Thursday.

Today reaffirmed that decision due to the exhaustion I feel.  After the big holiday week with doctor's appointments for both girls, family visitors and the usual holiday traditions, I thought I'd be wiped out on Monday but it was actually a pretty productive day.  Ben got his braces off, I got more Christmas boxes unpacked and both the hospice aid and nurse came to visit.  Mom got a nice bath, and I talked over her care with the nurse.  I also cooked another turkey since we gobbled up all of the Thanksgiving one (pun intended). 

Today was a different story.  Mom was very agitated and I had a hard time getting her calmed down.  The usual pills were not working and I'm really having a hard time understanding her.  She tries to talk but it either doesn't make sense or is too quiet for me to catch.  She no longer wants her depends on and that can be a sign of coming to the end.  I'm also having a hard time getting her to take her pills and I'm having to weigh the costs of not giving her the ones we've limited her to.  Water is also a challenge as she so easily chokes and the mouth sponges don't seem to satisfy her.  All the more reason that I'm glad we've ordered her a hospital bed.  That is scheduled to be delivered on Friday but I might ask them to bring it earlier.  I talked with her about dying and was trying to encourage her with what is ahead.  That only made her cry and she didn't stop until Dad came in and started begging her to stay.  I think that's what she wants from me - to tell her that I don't want her to go.  I can't, in good conscience, say that.  I want her to leave this suffering and be whole again.  I'm worn out from trying to keep her comfortable and having her moan when I change her and change her bedding.  It has been a long gradual decline and I've been saying goodbye to the Mom I knew for so many months.  I will grieve when she goes but I'll also be glad for her and relieved.  This evening it hit me like a ton of bricks, that this very situation would have been the kind of thing I'd have called her to talk over and get advice on.  I'd have shared, honestly, about how hard this is and how I really want to do the right thing.  And she'd know just what to say.  Well that Mom has been gone for over two years and yet I've not been able to grieve her because she's still here - in body and in snippets of her personality (just not the ones I've admired) but rather the fearful and anxious parts.  She's still dear and sweet and we've had wonderful moments of tenderness but she's often demanding and self-centered (a common characteristic of the terminally ill.)  So I see that I'm tired from the journey thus far and am grateful for the providential gift of my sweet, smart and very capable sister.  Just in the nick of time.

Thankful

The day after Thanksgiving and although I'm very weary there is so much to be thankful for.  We had a full house with John, Alex, Jacob and Markus as well as Will, Corinna, Sam, Nick, Adriana and Joe.  A second generation extravaganza and with all the activity, Mom decided she wanted to get up!  Corinna and Alex got her into the wheelchair and she even fed herself (with a little help from me and Will.)  When she was ready to go to bed, Will was my excellent assistant and was invaluable as she started shaking and collapsed.  It clearly had been a great night but also pushed the limits.  She's been sleeping much of today.

The day before Thanksgiving while I was walking in the woods with the dogs, Josh Groban's song came on my ipod.  The music and the words filled my soul with hope and so I wanted to share the lyrics.  There is so much to be thankful for - Happy Thanksgiving!

Somedays we forget
To look around us
Somedays we can't see
The joy that surrounds us
So caught up inside ourselves
We take when we should give.

So for tonight we pray for
What we know can be.
And on this day we hope for
What we still can't see.
It's up to us to be the change
And even though we all can still do more
There's so much to be thankful for.

Look beyond ourselves
There's so much sorrow
It's way too late to say
I'll cry tomorrow
Each of us must find our truth
It's so long overdue

So for tonight we pray for
What we know can be
And every day we hope for
What we still can't see
It's up to us to be the change
And even though we all can still do more
There's so much to be thankful for.

Even with our differences
There is a place we're all connected
Each of us can find each other's light

So for tonight we pray for
What we know can be
And on this day we hope for
What we still can't see
It's up to us to be the change
And even though this world needs so much more

There's so much to be thankful for

This Place of Waiting

One of my favorite Dr. Seuss book's is called "Oh the Places You'll Go."  And right now I'm in what he would call, "the waiting place."  I have to disagree with Theo Geisel in one thing - that the waiting place is not "useless" as he said but rather rich and full of opportunities for growth.  Like a seed in the ground that is surrounded by dirt and fertilizer and dark.  I know that I'm a product of my culture and just want to move on from this place.  I think that I can and should always be able to make things happen and I'm uncomfortable finding out that I really cannot.  And that is a gift all in and of itself.

Thankfully I've been in waiting places before and God has used the time to heal and speak to me.  He reminds me that this place is pregnant with possibilities if I'll only quit struggling with my insecurities and imperfections.  If I'll take the time to really listen and observe and surrender to His grace and quit trying to earn His approval.  If I'll take each moment as a gift and not try to control it.  I'll admit that this is not my first inclination but oh so healing when I do.

Mom, Dad and I are in this waiting place together (along with the rest of the family but we are especially impacted by it.)  I don't want to rush this but I do find it uncomfortable.  I sometimes think I just want to know how long this will go on and then I realize what a gift it is not to know.  It forces me to live in the present and not focus on a specific moment in time marching upon us.  It makes each moment a gift, for it is the only one we have.

Mom has been eating a bit more and seems to really enjoy it so this could go on for quite awhile.  Visitors have been good for her and she's more responsive than she was a week ago.  I have to keep discovering that this journey has many twists and turns and is not predictable.  Mom has many hours of peace and relaxation punctuated by times of extreme agitation and fear.  I never know when they'll happen but often it's at night.  I'm so grateful for lorazepam - the drug that hospice has given me to calm her.  Lately it's been a bit harder to calm her enough to let the pill dissolve under her tongue but a calm voice and prayer spoken aloud helps all of us.  Dad tends to look on with bewilderment and I'm so impressed with his ability to stay present with her when she is out of her mind.  Together we try to surround her with love.  This is taking a toll on him but it's where he wants to be.

Tomorrow is Thanksgiving and more family will be here to celebrate and spend time with her.  She seems to be looking forward to it as long as I remind her that she doesn't have to do anything - just let us know what she does or doesn't want.  She perks up so much for visitors - I'm grateful for that. I continue to be grateful for the prayer and support that is holding us up.  And I'm letting go in this place of waiting.  Trust, wait and let go.  Wait, let go and trust.  Let go, trust and wait.  It's all grace.

The Final Stage

How quickly things can change and oh, what a week it has been.  Mom turned 87 last Tuesday - election night and I had a few family members over.  Mark, Adie, Will and Corinna and with all the emotions about the election and all the commotion, Mom just checked out and refused to join everyone at the dinner table.  Will and I fed her in her chair on the other side of the house and she pretty much withdrew into herself.  The next day she was up for just a little while and only in her wheelchair.  She has not been out of bed since.  Each time that we've tried she begins shaking uncontrollably and needs to lie back down.  So we've entered into the final stage.

Even saying that I find myself slipping back into denial.  Even though she's not had much more than a few mouthfuls of food for the past week and she's losing weight rapidly - I find myself thinking that this will go on indefinitely.  And it may last for awhile but not indefinitely.  She sleeps almost all the time and is less and less responsive.  Dad and I are kind of at a loss at what to do.  He went to bed early last night so that he could snuggle up next to her and I encouraged it.  He either disappears into a book or sleep or withdraws into himself and I feel powerless to help him.  I'm trying to be comfortable with just being with him and not having to talk much but that is not my strength.  Words are my comfort zone, just as they always have been for Mom which is why her sudden lack of speech is so eery.  My comfort is in letting go and seeing that I really have no control over this.  I feel numb and pretty much paralyzed.  I'm so grateful that my caregiver counselor was scheduled to meet with me yesterday and she was so helpful.  She encouraged me to get out of my head and to be in touch with my body.  I tend to live in my head so this was a good reminder...not that I've done much about it just yet.

So now it is time to let the rest of those who love Mom know that she's in her final stage.  I asked her if there is anyone she wants to see and she said "no."  That is typical of the phase that she's in and so anyone who comes to say goodbye will not get much from her - she is processing her own death and is not so concerned about the rest of us.  This is how it should be.  I do ask for prayers for her to enter into her new life with peace, joy and a deep awareness of God's Presence and Love.  I ask that you remember Dad who will grieve her death with the deepest kind of pain.  I ask for prayers for wisdom and patience as we journey this last segment of her life together.  I am trying not to judge how I'm feeling or not feeling and my prayer this morning was to lay back in the current of God's love as we travel these uncharted waters.  Thanks be to God for His unending mercy and love.

This New Season of Cycles

Mom just opened her eyes while sitting in her reclimer with the sweetest smile on her face and said, "we're so glad you could stop in and see us.  I'm Ruth and this is Bob and who are you?"  That took me aback for a moment but I just told her I was Heidi and glad to see her.  She then drifted back off to sleep and then woke back up and said she needed to be leaving soon because she had to go grocery shopping.  Without constantly asking if she knows where she is or who she is (something I've been doing less of) I'm never quite sure what is going on with her.  However, I'll take the sweet Mom over the one who showed up yesterday.....

Daylight savings must of goofed them both up a bit because Mom woke up Dad at 3 in the morning and made him get her up.  At 4am, he came to our bedroom door, fully dressed and after having fixed himself a hamburger bun with butter on it.  I asked him why he'd done that and he said because he was up so it must be time to eat.  Yikes!  What if he'd tried to cook his eggs?!  Well, I finally got them to go back to bed (he'd helped her go to the bathroom and then get into her recliner) and I crashed on the couch near their room for a couple more hours.  I did hear her talking at him for quite awhile.  Dad got up around 7:30 and at that point Mom was an emotional wreck.  She was convinced that Dad hated her and couldn't wait to get away from her.  She was certain that he was leaving her and was almost unconsolable.  The angry/sad Mom.  When I told her she was loved and in a safe place, she got angry and said "I don't believe you!"  Thankfully, I've learned how to stay loving and peaceful when she's like this and often she needs a bit of food or to go back to bed with Dad lying beside her.  I also pray for her (both quietly and out loud) as she's emoting such strong feelings.  A hug and a kiss on her head also tend to take the venom out of her words and make her grateful once again.

The challenge is that she's cycling through her emotions, several times a day.  This is a symptom of Lewey body.  A grace in the midst of all of this is that she's sleeping more so the times I have to deal with her crazy cycles are not as prolonged.  I've been told to let her do what she wants and when she gets into bed with a big happy sigh of delight...well, how can I make her stay up?  (as long as they're not up in the middle of the night!)

Two hospice chaplains came to visit today and Mom drifted in and out of wakefulness.  Dad got to talk quite a bit and that was enlightening for me.  He's so quiet most of the time (while Mom talks almost all the time she's awake) that I don't often know what's going on in his head.  He repeated several stories right in a row.  When asked why he moved to Seattle, he pointed to me and said we came out to visit her.  Then he asked me, "were you married then?" So he must've had me confused with his sister, Gertie.  He also told Dennis (one of the chaplains) that the Thomas Kinkaid painting on the wall was Grandpa's church that Thomas had painted for him.  No wonder he's no longer combing his hair or shaving unless I remind him.  He's slowly losing out.

I'm actually doing pretty well for the time being.  I got to preach on October 28th and I'm helping with a parenting class on Friday nights.  I'm getting a massage once or twice a month and that's helped tremendously.  It gives me life to get out on a regular basis so Corinna has been an absolute gift from God.  I'm so thankful for her loving attention to her Grandparents.  I feel so blessed to be able to care for Mom and Dad with all the ups and downs.  I'm still completely convinced that this is God's call upon my life.  Life is always an adventure when you're "just doin what God wants!"