End of the Journey

Momma, about 2009

March 28^th 2018.  My mom was set free from her trapped brain & body. 

Let me go back a bit….

June 2017.  Mom’s doctor calls me to let me know that he’s found what he thinks is 3 tumors on in her breast.  The C word.  Cancer. They can’t be certain without more tests, but he’s 90% confident she has breast cancer. 

Breast Cancer. Early On Set Alzheimer’s.  Crohn’s.  Poor body can’t catch a break. 

Mom and I talked about all sorts of things before she was too far gone in dementia to communicate any more.  There was ONE thing we didn’t talk about. 

You guessed it.  Cancer.  No woman that I knew of had ever had breast cancer in her family. There had been a couple with lung cancer that I knew of, but not like some families.  Seems mental issues were more common in her family than cancer. 

I had no idea what to do.  None. The doctor and I talked about all the options.  I’ll be blunt. They all sucked.  She had no way to understand what was happening to her, how could we explain any surgery or treatment?  She loved to walk, how I could I put her in the bed and take away the *one* thing she still did?

There have been a lot of hard decisions on this walk in the dark, but deciding not to treat cancer was by far the hardest.  After all, that’s what we do, right?  Treat it.  Fight it. Try to beat it. 

But I just couldn’t.  I decided, with input from family and friends not to treat it.  For the next 8 months, there really was no change.  She still walked, she still ate, she had the best “quality of life” that was possible in her condition.  The staff did a great job keeping her as pain free as possible.

February 2018 she began a decline, wanting to sleep more and needing more pain meds. 

March 19, 2018 they called me and said she’d had more pain over the weekend so they started her on a pain patch, but she was still eating.  When I visited after that call I couldn’t wake her up.  I told her I loved her and to be a peace…but it was hard. 

March 26, 2018 the nurse who was there the day I admitted her, called me tell me she stopped eating.

Early in the morning of March 28^th, I had a dream. She woke up and talked to me and said she wanted to go home.  I told her “Well, go on then! We will be ok, besides, Aunt Cathy will be there with some chocolate pie and you can eat it in heaven cus you won’t be allergic” and she replied “Alright”. I woke up and told Jimmy about it and said, I think it won’t be long. A dear friend of mine remarked later, when its time for me to go if someone mentions chocolate pie, I'mma be like see ya!

March 28^th 2018 8:11 am.  The nursing home called to tell me they thought time was near. I let work know I wasn’t coming & talked to my brother.

March 28^th 2018 9:05 am – we were on our way out there when they called to tell me she had passed away peacefully. 

My husband and I arrived at the building.  The staff was so sweet to us both.  They had the room emptied, azaleas had been picked from outside and in a vase on her bedside table. Music playing.  We stayed with her until the mortuary came and got her. I thought I was prepared, I knew she was in a better place and no longer suffering, but I wasn’t.  I had said goodbye several times over the years because she didn’t know me, couldn’t communicate etc, but it was different this time.  They invited us back to a memorial service that they planned for April 5^th. 

We went to the mortuary to handle business, and turns out the funeral director in Mississippi shared the same first and last name as mom’s first cousin who would help me bury her in the cemetery where most of her family is buried in Alabama.  To me, it was a little hug from God that I was still – even though they were hard – making the right decisions. 

That night I dreamed of my grandmother.  She’s left us Dec 31, 2015.  In my dream she gave me the biggest hug.   I miss her so, and her hugs. We were in the living room of her house, and I saw pictures of Uncle Don, Aunt Cathy and some others of the family who had gone on already but those were the two I remembered when I woke up.  I remember hearing her say she loved them all and "there are many rooms".

The next few days were tough, I won’t lie. One daughter was out of town and I didn't get to tell her until Friday. Friday was also our other daughter's first prom. Easter we were all worn out and tired and it was the 2^nd anniversary of my MILs passing so we stayed in our PJs and watched our church’s Easter service live online. 

April 5^th the chaplain of the nursing home had the sweetest service in the living area of the building.  The residents who could all came. Many dressed in their best skirts and shirts and carrying handbags.  It was so beautiful how much they loved mom. The staff all attended.  It was very sweet. 

That afternoon we all traveled to Alabama.  April 7^th, we held her memorial service and then laid her to rest next to her sister. There was a lot of family we hadn't seen in years, some we see often, and friends who came to the service.  It was bitterly cold, unseasonably cold for after Easter.  The dogwoods were blooming, so it must have been dogwood winter. 

Until that night, the hardest thing I’d ever done was stand next to my MIL at my BIL’s funeral and read her prepared remarks in her ear so she could repeat them to the audience, because she couldn’t see her writing through her tears.  That has now been moved to number two, replaced by the walk from our car to the gravesite carrying my momma’s ashes. 

Gravesite, Spruce Pine, Alabama

I know in my heart she’s whole, and free (and probably eating Aunt Cathy’s chocolate pie, and maybe  some chicken tenders too) but there is still a hole here on earth. 

Here is a link to the tribute page I put together for anyone who’d like to donate in her name to help find a cure. This disease is terrible, no family should have to go through this, no loved one should have to walk this path. End Alz Tribute Page

The out pouring of love from friends and family near and far have given me great strength.  Its amazing how a text, a meal I don't have to think about, hugs and warm thoughts really do help. 

The doctors, nurses, aides and other staff at the nursing home are truly angels on earth.  I have no idea how they do that job day in and day out with such love and care.  I wasn't a perfect daughter, but I always tried to make decisions in the most kind and loving way I could.  Fly hi mom....

Momma, 1969

Obituary in Jackson paper

Obituary in Alabama Paper

I'll fly away

Amazing Grace

March 2015 update

I know it's been awhile since I updated, but there really hasn't been much to report.
Mom is non verbal, though she does respond to her name. She spends more and more time in bed. She's on a drug that suppresses her immune system, to help with the Crohn's, so everyone tries to not expose her to any bugs. Since we've had more than our fair share this fall/winter I've stayed away to prevent exposure from our germs. It seems like every time we get well, it's not long and we are down with something else. They had a flu out break but were able to contain it in a different wing so she didn't contract it.

This week she had a fall, but wasn't hurt. She's also had a decrease in appetite. The doctor tells me that this is most likely progression of the dementia.

Update from around the holidays

Well, things have changed.  Mom didn't tell me that "it was time for me to go" after 15 minutes this time. 

It's because she cant talk anymore.  

Its been so fast.  I hate it so much.  She can say "yeah" and then laugh and laugh, but that is it.  They have a speech therapist who comes and works with her 3x a week, hoping to help, but it doesnt seem to be. 

Crohn's wise she's doing pretty good.  

She seemed glad to see us, which was a change. I could ask her questions and get a "yeah" or just a grin, or a laugh.  They've told me to try to make her talk.  

I spent some time showing her pictures on my phone, and some people she seemed to recognize.  

Its been a long time...

Since I updated.  But I really don't have anything to add.

Its still surreal, to know mom has been at the nursing home for over a year.

When I visit she's glad to see me, but after about 15-20 mins she asks me to leave.

It is beyond hard.  Makes me not want to go.  I don't go as often as I should.

Its JUST SO HARD.

She's in fairly good health though, participates in all the activities that she wants to, and seems to enjoy being around the people there.  I guess that is something to be grateful for, even if its hard that she seems so different. She doesnt want to talk even on the phone anymore.  Everyone says "at least she doesnt beg to come home"  and I guess that is true, but it doesnt make it any easier that she seems to not want to be around me, either.

What a year.

I was thinking this morning about the last 12 months of our lives.
Its been how you say, difficult.  long.  hard.  rough.  But through it all, God has been there.

I was reflecting on the journey, and trying to remember the places, times, people that God sent to us.

Since this time last year, my mom's disease escalated.  She wandered away. Police were called to find her.
She was admitted into geri-psych.  She was placed in a nursing home.  She's adjusted well.  My father in law died of a heart attack.  The estate was settled. I was sick for three weeks with what we thought might be West Nile, but turned out to be a virus of "unknown type".  My brother in law died of a drug overdose, just last weekend.   That is still up in the air, and I won't publish details because there is a legal battle brewing.  There are details in between the lines of this paragraph that would provide enough fodder for at least two or three lifetime movies and or books.  Maybe even a series of books.  Seems like everywhere I turn there is pain.

There have been good things too.  In the last year I went through a leadership program at work, which taught me a lot about myself.  During that, I met an amazing young woman, who then introduced me to some more amazing women that I know have my back.  My ladies bible study is a rock in my life, and I am thankful that she invited me to the first one.  I also lost almost 40 pounds, because I joined First Place for Health at church and God used it to help me get on track, and overcome the depression that had me in a deep dark pit.  I have grown closer to other women in my life too, and I cherish their friendships.  I have a support system in place that God knew I'd need.  Here I thought it was for my mom, but it ended up being for SO much more.  I've stopped things too.  I dropped being a Girl Scout leader because of my pro-life convictions.  I stopped playing bunco, which while I enjoyed the "girl time' it was just too much in my schedule, plus I felt God was telling me I needed more 'home' time.  We went on a great family vacation, which we desperately needed thanks to my father in law.

I can look back and realize, that somethings happened with my mom so that I could be a help to others.  A dear sweet lady is a little further behind me on her walk with her mom, and we have been able to help each other a lot.

My brother in law dying was tough.  His funeral was one of the hardest I've ever been through. Partly, because I could see the raw pain of loss from an unnecessary cause, and partly because I could look at others in the room, family, family friends, and realize that they too may take the same exit that my brother in law took because of their addictions. A lot of things have been said, a lot of actions taken, and while its easy to say its the people, I can tell you with out a doubt that its the devil, he's at work in that community and family and has a grip on so many with their addictions.  I hope, I pray that the light of Jesus will shine on them, and that they are freed from their addictions, in Jesus name, but unless they WANT it it won't happen.

A coworker/friend of mine told me yesterday that he admired my strength.  I don't FEEL strong. I feel Jesus.  He's the strong one.  Thank GOD that his mercies are knew every morning, and that he provides the grace and strength we need to get through.  Except for the grace of God, I could be in the same pit others are.  I've had a LOT of things happen to my family in the last year.  Just as easily could be me addicted to some medication.

I take comfort in many things, that God works all things for good for those who love God and are called according to his purpose.  Maybe, I'll never see the good that comes out of the situation we are currently in, but maybe, like I have seen with stuff with my mom, I will see it.  In just the last week, there have been so many things to show us that God's still here, he's still protecting us, and he's still got this.  Maybe someday I can blog the details publicly, but right now with the legal proceedings I cant.  But believe me, he's there, he's alive, he's real, and he loves me.  He loves me, he loves you, he loves us all.  Even people in a deep dark pit with darkness surrounding them, and their actions straight from the pit of hell - because that is what our fight is. Not with a person.  Not with people, but with the powers of darkness.  And I know, that truth will win.  God DOES win, Good overcomes, and light makes darkness flee.

Armor up. The Fight is Won, but we still have to prepare.

Christmas update

Hadn't been to see mom this month, we've been sick several times.  Sinus, strep, flu, you name it, we had it. Today we were all well, so I figured we better make the most of it.
So the girls and I went to visit today and take her a Christmas present. They had moved from the building they were in while the original was being refurbed, and back to the right one.  Mom had never seen the "real" building, and today was our first visit there. It was nice. They did a good job on the upgrades and she enjoyed seeing us.

Strangly though, after 15 mins she was like "time to go" I said we don't have to leave yet, we just got here.
She sat back down but then about 15 mins later she told us to leave, that she had stuff to do. Well ok then.  Ha.  Met one of her new friends, a sweet lady about to turn 80 that was quiet the talker.

So, I got a picture, but thats about it. I guess they were having some Christmas activities and she wanted us to move along so we left.

She seemed to be doing well, in good spirits and happy. Just not in the mood for a long visit!

I really messed up this time

I really messed up this time.

That’s what mom told me on the phone yesterday afternoon about 4pm. 

This is how the conversation went:

Me:  “Hello?”

Mom:  “Hey. Can you come get me?”

Me: “No, mom I can’t, I’m at work. What’s wrong?”

Mom:  “I really messed up this time I think”

Cue panic!

Me:  “What? What happened?”

Mom:  “I don’t know, but I need you to come.  I messed up. “

Me:  “What happened?”

Mom:  “I don’t know”

It always takes me a few minutes to realize, hello, she can’t convey the thought, talk to someone who can! It’s hard to realize that your parent can’t communicate. This back and forth went on for a bit until I said:  Can I talk to the nurse?

Mom:  “Sure”

Nurse:  Hello?

Me: Is mom ok? She told me she had “really messed up?”

Nurse:  “She’s fine, she’s had a good day, went to the beauty shop and got her hair done, when she got back she asked me to call you. “

Translation:  “Can you come see my new hairdo before I mess it up?”

*whew* this is the strangest disease.

As I told a friend earlier today, this journey has been about unseen shoes dropping. I know that getting her placed at this particular nursing home was a huge blessing, but I live in fear of the “we can’t handle her “ call, even though, logically I know they can.

It just seems that every time we are smooth sailing again, something pops up (don’t get me started on the hidden mail again! I just recently was mortified AGAIN by some mail that had to have been hidden her last week or so at the house – uggh!) 

*Edit typed this us last night but forgot to publish