Sweet. in the fiercest way that word can be interpreted.

It's hard to jump back into the everyday after you experience something so intense and sweet. 
Sweet. in the fiercest way that word can be interpreted.

I got my Aunt Sissy's TV.

I didn't particularly want it because it was a TV. But it was hers. so I want to look at it.
because she did.

It's from her room at The Cottage. 

The Cottage is a place you would never know exists until you need it. 

Until you know someone who needs it.

This cottage is at Spring Arbor Residential Assisted Living and Alzheimer's Dementia Care.


_______________________________________________________

My Aunt Sissy is not an average aunt.

She is not even an average person. She is an all-in person.
She is my mom's sister.

my mom, Doris. My aunt, Laura Marie. and my aunt, Sissy. in the polka dots.



Someone who loves you by squeezing your cheeks so hard it actually hurts. Someone who has your back so much that she will keep secrets for you. Someone who will bust her neck to be at any event that celebrates you. Someone who will return an item for you, send back a cold dish to the kitchen, or complain on YOUR behalf.
She is all about OTHER people. 

She is selfless.

especially when it comes to her babies.
most notably- her daughter Susanna. her son Matthew. their spouses Steve and Susan. grand babies, nieces, nephews, and everyone who marries into our family. and I don't picture all of them in this post but they are important.

My aunt would do anything when we were little to help my mom, her sister, and the rest of our family. She wanted in on everything and made it more fun. Her family even lived with ours for a bit. If we needed something she was there in a flash and it was always understood that Sissy would be there.

when she was. everything was as it should be. 

I remember when we would drive to Charlotte as kids. It would be much more fun once Sissy was in the car. She usually had some kind of treat. like a jack-o-lantern necklace with a bell inside. One for all of us once she leapt in the car. Her gifts usually lit up, played a song, or had glitter falling off.

She lived across from her neighborhood pool and going to her house felt like going to an amusement park. There was always a variety of popsicles and chocolate treats in her freezer. and you could have anything you wanted there. There were no limits.

Looking back, the pool was tiny and her house- a rancher with an average sized yard. But as a child it felt like the biggest place and the biggest yard. there was a tree we always climbed. And I could tell you specifics- about the pine needles in the back left corner, the chain link fence, and where to aim the wiffle ball on the back of the house if you were the pitcher.

Once I was homesick when sleeping over there and so I snuck out of bed and into the kitchen. Sissy was sitting at the table and said, "baby, it's ok." and she came back to my room and rubbed my back until I fell asleep. She said she wouldn't tell anyone because I asked her not too. I didn't want my mom to know I got homesick. She never told. She said she wouldn't. So she didn't.


I can still hear her saying "Come here to ol' Sissy."

I heard it almost every time I saw her.

She was good at scratching your back, rubbing your arm, or just hugging you if you needed it.

*

*

One Christmas a few years ago Sissy forgot the rolls. She went back home to get them and returned to her daughter's house about two hours later. It didn't make sense to go back for them and it didn't make sense that it took her so long.

*

*


Things like this- they change slowly.
as to sneak up on you and blend in with someone's personality.

For a while some of these changes were frustrating.
I think I speak for a lot of people when I say there is some regret about getting frustrated.

because changes in the mind are not clearly visible.
and as humans we lose our patience

and we honestly hope things are different than they actually are.



Sissy, you PAID your bill already. let's walk out... come on!
Sissy I HAVE YOUR PURSE. no one took it. IT IS RIGHT HERE.

It feels horrible to remember the frustration. I am not looking for comfort for this. I am simply being honest. because it is part of the effect and part of what happens.
but it is only-- part.

________________________________

Alzheimer's is cruel. 

There are many stages and they are all hard in their own way. Sissy also had another kind of dementia   as well. I say this for the sake of being specific, but they are all unkind.

At first she was still the Sissy we knew but she was confused and a little lost. Lost on where things were or when things happened. She asked for the receipt at restaurants at least ten times and always thought someone had paid her tab even though she did. And for some reason she always tried to pay you back or for something. I would let her put money in my purse and then just put it back in hers. It was easier than telling her she wasn't right.
It hurt me when people corrected her or made her feel wrong because in this stage she was aware and fought the confusion.

In a way. This was the worst part.

I never wanted her to lose her independence or sass.

She was a whiz at math but when her ability to add for a tip was compromised it broke my heart.

Watching her stare at the receipt hurt my heart.

She had a broken gas gauge in her car for years and manually calculated miles until she needed a refill in a little spiral notebook. She was very together. It was hard to watch her mind wonder.

When Sissy finally needed it, she moved into Spring Arbor Assisted Living. She seemed too young.

 She seemed too chipper and fun. Particularly touching was seeing her name engraved on a gold nametag at her dining spot.
I don't know why but that was a heavy dose of reality.
that stung.

But the state of her laundry, schedule, and dishes were indicators that her mind was somewhere else sometimes. 

she needed it. it was clear.


_________________________________________

It was hard to see anyone not understand her.

I wanted to tell everyone that she was awesome and this disease was dumb.

Early on in this journey we were in line at a cash register and she got anxious and upset over being confused about how to pay and who had her card and wait... wait.... and then the people around seemed to rush us.  Or to notice and start looking.

Sissy was getting a little louder.

I wanted to cry out. Everyone. She is trying! She is handling this like a champ!

__________________________________________


You just can't tell what people are going through.

_________________________________________

She was a fun resident. She hung out with the staff and she thought they gave her jobs. She felt like she was needed there. She folded dining room napkins and chatted with other residents to keep them company.  She always introduced you to "her little friend" which was the resident she was chatting with at that given moment. Then she would look to the side and hint to you that the resident needed her and she was just helping out. 

She hoarded cinnamon buns from the front desk in her tiny fridge 

and over-purchased Pepsi and cigarettes. 

She would tell us she was running out of those things often but didn't realize that she had plenty.

Except sometimes she really was out of Pepsis because she gave one or more to anyone in arms length.

She would organize her mail every day as if it was the first day she got it and it was her job. She couldn't leave her room one day until she finished reading every card and making piles.  These were cards she received over months.

my sister, Laura. and Sissy

I went a lot with my sister. We were her "babies" although any important child to her is automatically one of her "babies."

"OHHHHHHH LOOK WHO IS HERE! MY BABIES!" was usually our reception and the whole place would turn.

Celebrity status. 

Her compliments were fierce. and literally sounded so-
"you. are. ADORABLE"
That should be read with a passionate angry voice. It is hard to describe without doing a real impression, but the message was understood- She was supportive. loving. and kind.
in a very fierce way. 

_________________________________________

Sissy woke up one morning and never walked again. 

When you think of Alzheimer's you think of memory and the brain. But the interesting thing and the cruel thing is that it affects your body too. Your brain is such a part of how your body functions. 

she went through tests and we found no physical reason why she would cry and be afraid to stand. 

weeks later she did stand up out of the blue. And she immediately fell. 

Broke her hip.

___________________________________________

Sissy went through surgery and from there she declined even faster.


It is so wild to get comfortable even... with suffering. and then boom. something changes and you think- WAIT. I am not comfortable with this. I hate it.

Overall, the journey was quick. It started years ago in minimal signs and behaviors.
It grew into something that pulled Sissy farther and farther away from us.

But

Spring Arbor and The Cottage. That was a gain. 

Our family got something back. We drew closer to other residents and to the people who cared for Sissy. 

My mom once did an entire chair aerobics workout while we all watched the residents just stare at the instructor. I sincerely think my mom was having a blast and getting something out of it. Sissy wanted no part in it but occasionally would get a kick out of noticing her sister tapping away. 

We were jealous if one of us was able to make it to Wednesday night devotions. 

Once my sister and I took Sissy to a musical performance down the hall where she had a blast smiling and telling us how much fun she was having in the moment.

One second she would say something was amazing.
The next second she thought it was awful.
But we could direct her back to the positive view easily...

especially if you smiled.

She could not resist to smile back.

a "You're Cute!" and maybe a tap on your nose. and then the subject changed. 

_________________________

We were missing pieces of Sissy but we gained new pieces. 

Sissy's daughter- Susanna, my mom- Doris, my twin sister- Laura, and I would report the news from the cottage to each other.  We became a pretty tight team.

when sissy was in the hospital. so were we :)


I would want us on our side if something happened. 

The four of us got very close in our caring about Sissy and squeezing all the good we could out of this time together. We would individually have good cries over things we experienced and being heartsick for our sweet Sissy as she grew more fearful and irritable. In the dark places my mom reminded us that this was also part of Sissy's life and we needed to see the importance in it and be present in what it was about -- now.
And now it was about being close to one another and seeing the value in being kind to everyone. 

It was about sticking together.

laura consuming sis

It is in The Cottage that you are extremely aware of what it means to be kind.

And that is where you get a room when you need more attention and care.

When you see the way people's minds and bodies change. and you see people step up to maintain the residents' dignity. it is very beautiful to watch. 

Outside, I definitely felt the sacredness of life in a more intense way.
I became even more aware of the needs of others and the fragility of time.

We were no longer just watching our sweet Sissy change, but the other residents we were growing attached to were also changing.

The good thing about suffering is that it is a rich place. and it is a unifier.

It is an honor to be with someone suffering and even suffering yourself. 

________

Seeing that is very hard. 

but once you can see that you can find that special place between heaven and earth.




Laura. Sissy. Me.

if you have experienced it, you feel me. 

If you haven't. You will. I hope that you do.

__________________________________________________

So much of this journey was ugly and unfair. And that was a big challenge for all of us. To not scream and cry at the things that we felt robbed of. 

Leaving Sissy when she was increasingly uncomfortable and less recognizable felt terrible. 

Having fun myself but knowing where she was and how she felt broke my heart.

Her innocence was precious. There were many times when it felt surreal to be the one holding her up or meeting her at medical appointments.

She did so much of that for others.

She arrived in the van one morning buckled up and looking adorable in the back. Confused. but smiling. That kind of thing killed me.

It became very sweet.
And sometimes sweet pulls at your heart a little more than usual. 

But there was comfort knowing she was in a clean, safe, and loving place.

There was fun in that place too. games. music. and lots of friends.

My sister sent a text to my family one day saying - Abby has told her life problems to at least three cottage residents today.

I did! They listened and when they offered advice it was special and I ate it up. I absolutely had no problem repeating a conversation over and over. When we were there we had time to connect and chill. It was a haven.

We knew a lot about all of our buddies.

All of the residents wore hats on holidays and gathered for little programs. They played memory games and had sing a longs. Raise your hand if this does not appeal to you.


and we still had a connection with Sissy. we still saw pieces of her and her spunk.
We could have conversations and laugh together.




When saying goodbye once I threw in- hey, don't forget me.
and she turned quick, appalled- why would I do that!

(and she didn't.)



Although it was different, I could still put her hands on my arm and it felt like she was comforting me. I could still feel her.

While the disease is cruel, God is not.

And I can honestly say I battle with my faith because of things I have seen and experienced.

I am not perfect. and I am not even close to the most faithful person, but when I fall, God carries me. 

And I know this because if he didn't, I wouldn't be able to see the sunshine and light in the terribly bleak places.

Don't get me wrong, it is not an amazing rainbow of wonderfulness, it is like a tiny flicker of light bouncing off someone's spoon at dinner. It is so small sometimes but it is your choice to see it or not. 

It is all very raw
and so reflecting on this is pretty hard to do. I am still mad at her having to be in any pain.
or her having to be afraid in any way. 

Sissy is one of the most faithful people I know. 

She had blind faith. 

She would declare that we trust God in every moment. 

She got this from her mother. Her mother said, "we do not question the work of God Almighty."

I think they have to be right. 

There is no win in questioning it. 

There is no victory in frustration and anger and struggle. 

But there is a peace in the midst of suffering. 

There are people who bring homemade scones in the middle of the night when you are sitting by your aunt as her chest still moves but her spirit is hard to see. 

_______________________________________________________

Last week my mom called to say we had maybe 24 hours with Sissy.
and she was picking up Susanna who had a car in the shop.  They were with her the night before and there were signs indicating that her body was dying very soon.

So my sister and I rushed to Sissy's bed. 

We beat my mom and my cousin there. 

We were with Sissy so often that when we walked in the staff gave us reverent looks as we jogged down the hall. 

---------------------------------------

We immediately ripped her bed away from the wall and my sister threw herself in that crack. I climbed on the other side and laid down with her while we bawled.  We looked up within minutes and my mom and cousin Susanna walked in. They were smiling but their eyes were watery.

"It is different isn't it?"

______________________________________________________________

I always cry worse when someone is kind to me. 

I can be super upset or hurt and stay strong but if someone is sweet...boom...it really sends me over the edge. and seeing my mom and cousin come in smiling in sadness really got me. 

Through this whole process all four of us never got upset at the same moment. some of us were always strong or together when one of us got a moment to fall apart. 

*

*

*

We settled in.

One thing I learned that I never thought I would have to learn is that everyone has a hospice story. 

Or at least that was true for whoever walked in the room. 

The same way everyone has a story about when they had their wisdom teeth out. 

Or when they had a baby. etc. 

But in this case advice felt strange.
How can there be any rules or advice for something so deep and personal.
something so specific.

Many people told us to leave and let her die. 

This did not sit comfortably with any of us. 

To be honest we left several times for an hour or two.
which insanely, I feel the need to report as if we were "supposed to." But we were never going to just leave Sissy. 

She would have never left us. 

She took care of my siblings when I was in the hospital as a kid. My parents could always count on her. She even made it to the hospital before anyone else when my dad died. She got there first because she owns a time travel machine. I think. 

Her favorite story was from when my sister and I were babies. She was dressed in scrubs to see us in the nursery... and the staff thought she was a doctor. This story is one she held onto and would still tell close to when she stopped talking. 

_______________________________

We stayed with Sissy that day and committed to being there until she was at peace.



There were hard things to see.
I even wrote it all out because it was therapeutic.
I don't think I need to keep them here specifically.
But I wrote them for the same reason that I stood by and experienced them.

I wanted to witness her life. and this was part of it.
I wanted to stand by and say. Sissy. I SEE YOU.

I see what you are going through. and we are here.


_____________

It isn't that we weren't open to the opinion and perspectives of others. But in this kind of moment those sort of things make less sense and your heart and your feelings do more of the decision making.  Because, we have less control over life than we think.

At a certain point the hours got so late that without formally deciding it

I made a bed with a chair and a stool. That gap between the chair and stool really did my back in for days- now that I think about it. But at the time I could see her face from my set up and that is what I wanted. I was inches away really.

Susanna was in the bed for an hour with her momma. but when she really needed to sleep she hit the hard floor. 

My sister was on the floor after her double chair set up quit working for her.  

I remember some staff coming in with blankets for her that she configured into a kind of bed. 

Every hour or so someone would rise up and check. or just sit awake. 

I asked God to take her struggle away. 

We all told her she could go and that we would take care of each other and all of her babies.

There is so much feeling while we are here. oil on canvas

_________________________________

Sissy held on a long time. 

By the next night the staff put two twin mattresses out on the floor that we shared. 

I passed out drooling for an hour and woke up to my cousin and sister bawling. 

I never heard a peep until I came to and it was because the nurses came in to turn Sissy.

Those moments were significantly harder and harder. Watching the staff turn her was by far the worst and it was sweet when my sister made a cape with a blanket to shield my cousin from one of those times.

______________________

We went to dinner on Wednesday night because it felt like the right thing to do.

and we had a wonderful time.  It feels weird to say but we were together. It was peaceful and sweet.
We all loved our food and were laughing and smiling. All of a sudden we felt like we needed to go back. But also that we needed ice cream.
So we got some

and finished it right as we walked back in. 

_________________________

This part is interesting.

All four of us think we were the first one in the room.

_______________________

We knew instantly. it felt very final. 

We rushed to the head of her bed and all four started crying at the same time.
A first.

My mom broke out in prayer like I have never heard her do and she asked God to please please take our sweet Sissy from her body that was so tired and hurt. 

when I glanced up one of the pastors of our church walked in.
at the exact moment when our heads rose.

In ten minutes Sissy took a final big breath

and very slowly her heart stopped beating.

We all stayed silent in this last bit of time.

Her daughter, Susanna, was sitting right at Sissy's face holding her arms and hands.

My sister was sitting on the bed holding her legs.

My mom stood right beside her on the other side.

I remember some talk about angels and some questioning about whether or not she was gone. 

The nurse came in to see that we needed the hospice team to come back and while we waited for the hospice nurse I crawled into the bed with my aunt. I was there while her heart quieted.

When I was little I climbed up next to Sissy too.

me. sissy. laura

She always collected her people up in her arms.

And even though her spirit was gone, we loved the shell God gave her. There is so much respect for the body of a loved one even when they are gone. I found that with my dad too. For me it isn't creepy or scary. It is precious and it is a tangible place to focus your love and grief.

We had a little time to wait and we just stayed there with her. We relaxed a little because her struggle was over. Her body was relaxed finally. But we cried too. 

My sister had a moment of feeling like Sissy was the new kid in heaven and she literally cried hoping she was ok if that was the case. 

My family is good at the art of crying and laughing in the same emotion.

We were cracking up when my pastor said there were heavenly hosts. 

and even so, when was Sissy ever a shy and timid "new kid?"

____________

We cried over how awful it was for someone to suffer. for her to hurt. and I stand by that. it is awful. 

We smiled though when the man who came to get her draped the American flag over her body on her way out of Spring Arbor.
She was in the Air Force... a really tough and strong woman who left that building with honor.



It was the middle of the night but it felt like crowds were honoring her work on this earth.

When she was dying I told her how proud I was of her. How she did an amazing job living. She was so good at living life. She was happy. She was genuinely thankful and faithful.

two of her nephews/babies: dean and joey

Sarah and Eric. two more babies/ her nephew and his wife that she loved

one of her grand babies- grace

susanna, her husband steve and their triplets corinne, luke, grace. 

I never heard her say she was upset with any part of her life. There was never a time she had a pity party... at least I never saw it. She had breast cancer once and I teared up but she told me
"God takes care of me baby. I am not afraid."

Sissy would have given me the salt shakers off her table!

Well, she did. 

Actually she gave me Nordstrom Cafe's. I said I liked them one day at lunch
and she bought them from the restaurant. 

The ones off their table. Yes. 

She even gave me her bathrobe when I was little because I wanted it. 

__________________________

My life is different.

Caring for my aunt was not hard. but watching her disease was. 

My mother and my cousin, Susanna, did an outstanding job through the entire process. It was a life lesson to watch them power through and stay connected to everything.

They are strong women.

They were exhausted but they did everything they could to make sure Sissy had the best care and the best opportunities. 

_____________________________

Sissy and Susanna

I am very proud of Susanna. and so sorry that she had to endure this. 

Her mother is her best friend. 

and I know what a loss this is for her.

my cousin. and her momma.


And my mom lost her sister.
She lost her friend paus. That is a word Sissy made up for her when they were little girls. It was an honor because it meant you were her favorite friend of the day. it also meant you had to play whatever she wanted but my mom was thrilled by the title...
so little sister did it ha.

_________________________________




to fight with faith and grace. oil on canvas.

I am changed because I have been at the place where earth and heaven touch. I have been here before  with sick family and friends in moments before they died. but never watched someone as they actually left one place for another. I strangely feel like that very moment was too fast.

I know that my aunt was never alone in her journey. I know that my family has each other's backs and I know that while we all will die, we can carry our loved ones right to the edge.

Right there at that edge

I think that is where faith jumps in. Where you can no longer see but you have to accept, with hope, that it is ok.
That it is good.

____________________________________

I love you Sissy.