Praying for an end

Mom's trip to the hospice house did not go well. She was in a lot of pain and it took a tremendous amount of pain medication to get her under control. There is still a higher ceiling we can get to in order to control her pain, but we are 1quickly getting into that range. She's starting to make plans for who get's what when her time comes. I have danced this dance before and I know that this means the person feels as if their time is growing shorter. She's also told me several times and has said she's prayed several times that she has prayed to God to ask him to just take her home. She's tired of hurting and tired of the pills and knows that both are only going to increase from here on. We chatted this morning and she said she felt like she had made amends to those she needed to and wanted to make sure I thought she was okay with everyone. I told her she had done what she needed to and that anything left was up to the people themselves. She said at this point she wanted to be done and felt like those she was concerned about was up to them to find their own peace and their own forgiveness. It was a tough conversation because it feels like it's her time whenever the Lord calls her home, she's ready to go.

I would just say to all her family and her friends, if you have something to say to her , go ahead and say it. I feel like only the person who sick knows when their time is nearing and I get that feeling from her. It was a hard morning for me and tough to get through. She said she's tired and I feel strongly that once someone decided their tired and done, that it's not long after for them to make their journey home. I feel alone surrounded by people and overwhelmed by what comes next. Trying to keep my family going, myself going facing surgery and mom's future is so unknown.

All my love, 

Dana 

https://www.gofundme.com/ShirleyJackson

A trip---to the Hospice House

Well, We have been battling moms pain levels which she says can be measured at 20 for a few day's now. We've tweaked her medication's  increasing the intervals and the doses to no avail. She's had a new pain which we were sure was a kidney stone, however, we also believe that she has a new tumor pressing on her intestines not allowing her to have a bowel movement properly. Sometimes it will be days at a time. The concern at this time is two-fold. Keeping her bowels moving so her intestine doesn't become sepsis or figuring out a new pain regime overall.

The current medication they have her on at home are not getting the job done, no matter how we tweak them, so the nurse asked us to make the decision to go to Hospice house for a few day's so the Dr's can start with a clean slate and find the right medications to keep her comfortable and hopefully lucid. Our balancing act has become a daily battle that we are not keeping up with well at this point. Hopefully, Hospice house will have some answers that we can not seem to find.

Mom's memory is not great, probably because of the medication and she's moody and weepy, Who among us wouldn't be if we knew that increase in pain meant the battle was nearing its end? With each increase, each new pain, she feels she's being called closer home. Which is her prayer right now. That she's made her atonements, said her peace and is now wanting God to take her home away from the pain.

As I sit here waiting on the ambulance to take her to the Hospice House, I can't help but wonder how much longer it will be.


https://www.gofundme.com/ShirleyJackson

Mom's Decisions

Good morning,
As I sit here this morning the sun is shining bright, first in a few day's where it feels like a Spring Day. As I posted the other day, mom's been having trouble going to the bathroom. A result of colon cancer is that tumors develop in and along the colon. Mom has only 18" left anyway and when she had her last surgery, they found tumors in her stomach and around her colon. She's on day 9 of not being able to go to the bathroom. This of course is most likely the result of a tumor on the outside of her colon narrowing the "passage" way not allowing stool to pass like it should. This causes lots of pain and other problems. The only way to "fix" this particular problem is a surgery to remove that particular tumor or add a bag. The problem is we don't know if it's one tumor or many or if a surgery would actually fix anything. Even if we fix this particular "issue" there are plenty more. Fine motor skills that are not working the right way, vision that is going, difficulty swallowing and pain that's harder to control. Mom has decided that there will not be an end to the surgeries that are needed to control the spread of the cancer.  With this news, she's decided not to have any more surgeries.  This decision will lead to a progression of problems with an eventual likelihood of sepsis being the final event. Mom has asked us to please just help her stay as comfortable as possible with pain medication and enjoy the time she has left- which the nurse feels will be within the month.

She wants to continue to have her event this next weekend because she feels it will be the last time she is able to see her friends.

She doesn't want hospitals, surgeries, or tubes or artificial treatments... So, our new task will be to keep her as comfortable as possible.

This was a hard decision for her to make and we ask that everyone honor her wish to be made comfortable. Pray that we can keep her comfortable and that she can find some relief and comfort. She is scared as anyone would be, so encouragement would be best, cards or messages are always appreciated.

I don't know what more I can say this morning except we are going to try to live as much as possible in the next few weeks and handle each day as it is presented to us. She has much love for her friends and wants everyone to understand that this was a choice she's prayed about and thought about and feels is the best choice at this time.

It is not easy for those of us who love her to know that our time is growing shorter and that each day will bring a new challenge of how to handle things.

We thank everyone who's been staying in touch and sending encouragement so far.

The truth of colon cancer

Colon cancer affects so much but of course... your colon.  Every bowel movement with colon cancer as advanced as mom's is painful and you just regret that you have to go at all. Then there comes the other trouble. Any swelling can cause a backup if you will. Those are not uncommon though they are very painful. It was brought to my attention yesterday that it had been 8 day's since mom, had in fact, had a "full" bowel movement' by the nurse. She said if I could not get her to "go" but the end of the night that we would have to take her to the ER the next day and if it was a blockage that would mean surgery for most people but she is not most people. With her cancer, the hospital may not even be willing to do surgery.

We tried everything I could think of. Teas, cleanses, drinks, soups, enemas. Nothing was working, just more pain and us having to give her more and more pain medication. It's a humbling experience for a mom to have to let her daughter take care of those needs for her. I imagine the humility, the pain and the fear. I tried to limit these things by downloading a game we could play together while we waited out the treatments. It finally came to an "I am going to end up at the ER either way, so please just take me, the pain is bad and nothing is working" so I honored this request and called Hospice and we took her to the ER. They tried everything they could think of while avoiding taking her to surgery. It eventually came to a "looking around by the DR" who determined it was less likely that there was a blockage and more likely there was some of the cancer that had grown and is now pressing on her colon and bladder making her feel like she has to go or that she is backed up even when she doesn't. She's also not eating enough to create what the rest of us would consider a "normal" bowel movement'  She will have to start picking days one at a time. Each being weighed by how much pain she can tolerate vs how much she wants to do that day, but not both.


We have entered into the second phase of the cancer her DR told us about back in Dec. That she would have more bad days than good, more sleeping day's then awake ones.

It has hit me pretty hard today and I have had a hard time dealing with it. My friend Jo and her family came over and cooked our whole family dinner. It was sweet and an amazing gesture. I can not be more grateful.

If you wish to spend time with the Shirley you know, love or enjoy spending time with, I beg you... make the time now. Call her on the phone, send her a note, Skype with her, come see her.


I feel time is slipping and I am losing. So much I wanted to do, so many memories I wanted to make right, so little time to make things the way I would like. Please don't wait.

Been a while

I know it's been a while since I have made an update. This is for a couple of reasons. 1. I am still recovering from the car accident. I have been trying to be a good girl and let everything heal right, I am pretty much stuck in bed most of the time with this crazy pain medication and muscle relaxers they have me on and the ice packs I have to use after each DR's apt to make it where I am not hurting as much. I am not really as healed up as I thought I would be, so it has limited me a good bit.

2. Not too much has changed with mom. Her short-term memory is not as good as it used to be and I can tell it's changing. Her pain is still being managed with the same pain medication she's been on, so that is a good thing.

We've started Chaplin services so she has someone to talk to  and a CNA has been coming in to help with her showers and so on. She's been coloring a lot to stay busy in between rests. It's certainly noticeable that she's been resting more than.

She was able to cook dinner the other night with the help of Makenzie, so that was a nice treat for her. Her nurse comes once a week still and is okay with where she is with everything for now.


I would like to say this has been an emotionally trying past couple of weeks for her. It's hard to sit around and know you are waiting things out. She's not really had the energy to get out of the house and do much. I have been encouraging her to go for a ride or for her and Al to go to lunch, but she usually feels to worn down to get out and do much.

It would mean a lot to her to hear from her friends. I'd love to see everyone drop a card in the mail or a note to her. Let her know you are thinking of her, something to let her know she's not been forgotten by her friends or family.  I can give you an address if you'd like to drop her a note in the mail. It would be great to fill up a wall with well wishes from her loved ones.

A honey moon

I wanted my mom to have a few things she's never had before. 1... a honeymoon or a romantic trip with Al, they've never been able to do something nice before. 2. Staying somewhere nice, where the people actually cared you were staying there and catered to you like you mattered. When I asked her where the nicest place she's ever stayed she replied, "a Best Western". Now, I don't have anything against that hotel as a whole, but.... in your lifetime, I believe that at least once, you should experience a level of awe, a level of wow, a level of " I matter" something Best Western does not typically offer to the average guest.

So, we saved up some money and found a nice place in Savannah GA. One of my favorite places to visit. It's old, it's romantic and it's beautiful. I found a beautiful hotel that I thought fit what I was looking for and though it was pricey... I thought it was needed. The Planters Inn took amazing care of them. A bottle of wine in their room that was complimentary from the staff, a turndown service with chocolate on the pillow each night, valet parking for them, bottles of water and ice brought to their room at their request, a cheese and fruit platter delivered to their room. They were amazing and treated them like they were really something special, which was worth every penny!

We also made them reservations at the Pirate House, a famous place in Savannah, it's a great dinner spot with lots of history. I spoke to the manager on several occasions and made special arrangements to have them call me with the bill so I could pay for it over the phone (something they don't usually allow) However, upon thinking about it, the  manager, instead of calling  me... took care of the bill as a gift to us and mom. It was inspiring to know that people care and are willing to do their part. Something that was so small to him, but it meant the world to me. Mom had a nice meal at a cool place and the waitress and staff treated them like it was their place and that made the night special.

clearly, she's loved 

I wanted to also do something sweet and romantic for them. Mom loves horses and though she can't ride, I thought it would be nice to send them on a romantic carriage ride through beautiful Savannah. So, we found a company, bought a private tour, and they even came to the hotel and picked them up right at the front door. Mom's never done anything like this or been treated so nicely, made to feel so important. I thought it was wonderful for them, and I couldn't be happier that they got to experience it together, have some quiet time and check something off her list.

It was important to me that this was special and we were able to pull it off with a little help from some very caring managers in Savannah.
She said she had a few flare ups with pain, so we are managing that as it comes. Overall, her pain level is slowly increasing, but is still manageable enough for her to "enjoy" her life. Which is what we wanted when we chose this path. She's needing oxygen more frequently and her she has lot's of panic attacks, little ones, but they are increasing. I am certain those are from the overall realization of things. She's going through the grief process same as any of us will and are.

As I have said before, she is grieving the life she will miss, the time she thought she had. Every amazing adventure or experience is bitter -sweet, with a feeling of sadness blended in. A feeling of I wish I had done this sooner, or could do it again. A feeling of  sadness that it will be a "last time".

Can you imagine going to visit your son and family and knowing that when you walk out that door, it will be the last time you feel his arms around  you? I have wondered these past few weeks about life, about death and how it comes to people. How there is no answer to the question is it better to just wake up and someone suddenly be gone (like in a car accident) or to have time to say goodbye and watch them slowly turn into something, someone you don't really recognize. There is no answer, I have been on both sides and there is nothing that makes losing someone easy. I promise. I know that people say time is a blessing and that is true to a degree. Those who have judged me for not doing things better, not giving her more "hope" not letting her try other options... Those people don't make me angry, they make me glad for them. I feel like those who are judging how I am handling things, how we are doing things, have never been in our shoes, they've never had cancer touch their loved ones or had to watch and help someone as they make their way through their final days. I am happy for them, sad that they chose to voice it so matter of factly to me without understanding, but happy that they don't really get it either.

I have been here twice before with people I loved more than time or words could every express. It's unfair, it's a cruel joke that doesn't end. But, it's life and no one get's to the end without loss or moments of regrets. My mom and I have many. We have a lifetime of disagreements, of strife, of misery that no one understands or truly knows except for close family. What I am doing, opening my home, my life, my heart to care for her, to make sure she's comfortable and can "enjoy" the day's she has left... is a gift that most of you will never understand. It took a lot of soul-searching, a lot of walking away from the past and finding a good therapist that lets me complain and cry and a family that does the same.
 I have an amazing set of brothers who have been here for me, two sister-in-laws who never ever let me forget I am loved and being thought about. An aunt who checks on me almost daily and an immediate family who could not be more perfect and some friends who have really stepped up. Friends who don't even live close who send me love and check in on me. Then there are those of you who do the same for mom. Cards come often and so do messages and love.

They say you find out who your friends are in your darkest moments and that... is so amazingly true! No, life... this portion of it, the cancer, the turmoil it's brought, the chaos it's brought is not easy... but it's what is going on and in the end... I don't know if I will be better for it, but I won't regret being a good person and not turning away family because it's "hard" to deal with.

I wanted to say a special thank you to those who have sent money to help out with things. For now, I am setting all the money aside for final expenses since it's going to be so much and we are currently paying for all the bucket list stuff out of our own pockets. So, we are doing the best we can with what we have. Please know your help has meant a great deal to me. It really does make my heart do a little skip when I get an email that someone has donated.

Even if you can only give 10.00, everything helps, it really does! I would appreciate anyone who could pass along the donation information. I would love to send mom and Al to the beach for a couple of day's before she get's too weak. My other favorite place is Wilmington. It holds a special place in my heart as my husband and I vacation there. It really is nice and I know mom would love it. Asking for help is NOT in my nature, it's extremely hard for me and I have been known to push myself to exhaustion and tears to get things done without asking for help. So, please know that asking for help with the finances has been the hardest thing for me, but I do truly need the help.

A car accident...but the show must go on!

Because life is not already crazy enough... Friday, I drove my oldest to Concord for a Dr's apt and on the way  back, picked up mom and Al who were coming up to pick  up their car from my house. On the way back home, on a practically empty highway, we were involved in a car accident. On scene, mom had a minor panic attack and some initial pain, but was checked out by EMS, deemed "ok" and declined to be taken to the hospital. I had a splitting headache but thought it was just the stress of the incident. I had to get Makenzie home for her drivers ED class she could not miss and I was driving someone else's very expensive car which was very damaged in the wreck. Though the accident was in no way my fault, I still felt and feel very guilty about it as I was driving it. I thought I was fine,  but as time went on through the afternoon, I was hurting more and more. I have a bit of trouble now and then with a shoulder that I had surgery on a couple of years ago and I was concerned I may have damaged it further. So, I went to urgent care and was checked out. I was told I had whiplash and some muscle strain and to take these prescriptions and rest. Well, that was Friday afternoon and I had to still do shopping for the vows renewal for Sat and of course, get ready for that. So, after the ER I went shopping for Sat and was pretty drained by the time I got home!

Sat morning, I woke up in a lot of pain and feeling very ill from the medications they have me on. I was not sure I was going to be able to do the ceremony. I knew that it was very important to my mom and Al, so I pushed on and we gathered everything up and went to the church.


We got everything ready for mom and Al and waited for their arrival (and approval) I was officiating the ceremony and when I was writing it, had a hard time finding the right words. It's hard to know what to say for a renewal that may only last a few months. Most variations on renewal wording I could find online were about the years to come and so on. I knew those would not fit, so I had to kind of just work in my own words and thoughts. I will post the copy of the renewal for those who were unable to make it. I thought it was fitting at least to the best of my ability. It's only the second wedding I have ever done, so it was still a little awkward and a little emotional knowing what it meant. It was a good time by those who came and I am pretty sure mom and Al both enjoyed their moment and it held a special memory for them, which was all we wanted to do anyway.

Words are never easy to come by and I feel like a lot of people have pulled back simply because they don't know what to say or how to help. I always just want to say, sometimes, it's the little things that help the most and the smallest words, deeds and gestures are often the most helpful.

Mom is doing well (as she can be) the past few day's. She tires easy and uses her oxygen a lot. Her short term memory isn't very sharp and she get's confused in the moment easy, but she's still Shirley and she would still love to hear from everyone. My address is available to those who want to send cards or anything else. Just give me a jingle or note and I will pass it along.












The Ceremony:

The word renaissance means rebirth;
Today we celebrate the rebirth of a commitment
Before this honored gathering of family and friends.
Albert and Shirley with full confidence in the solid anchor of their love,

An unknown author wrote, “The world, for me, and all the world can hold is circled in your arms, for me there lies within the lights and shadows of your eyes the only beauty that is never old.”

Emily Bronte once wrote, “…he’s more myself than I am. Whatever our souls are made of, his and mine are the same…

Love is not simple nor is it easy. Love is complex and reaches through our hearts and into our very souls. It defines us in both good and bad ways. Love is a commitment of more than just words. It’s actions, it’s feelings, it’s sharing laughter and yes, even tears. It’s facing happiness with smiles and joy and standing tall and holding onto one another through fear and uncertainty.

Albert and Shirley have prepared a few words for each other today.

When you first joined hands and hearts 17 years ago, you did not know where life would take you. You promised to love, honor and cherish one another through all things. Life has surely brought you both wonderful blessings and difficult tribulations. Therefore, you have fulfilled your promise. And God is smiling! So, as you come here today to reaffirm your wedding vows and as you reflect back over all the years as husband and wife, do you now reaffirm the vows you took 17 years ago? If so, repeat after me.

I, (name), give to you, (name), a new promise, and yet not so new; a new (husband/wife), and yet not so new; and a new affirmation of love from the heart that has loved you for 17 years and will love you for as much time as God allows.”

You are mine, my love, and I am yours, as ordained by God from the beginning of time. God brought us together, kept us together. You are God’s gift to me, my priceless treasure, my blessing for life. May God bless us as we come together before our family and friends to renew our pledge of love to one another, eternal

      “Do you, Al continue to take Shirley as your loving wife? Will you continue to love her, honor her, comfort and treasure her, forsaking all others for as long as you both shall live? Do you, Shirley continue to take Al as your loving husband? Will you continue to love him, honor him, comfort and treasure him, forsaking all others for as long as you both shall live?”

      

As the husband and wife exchange new rings:

   “Husband/Wife, I give you this ring as a token of our abiding love and recommitment to one another.”    “We have lived and loved as we promised long ago in the presence of God, and our past and future are a circle unbroken, much like these rings, with which we renew our pledge to one another of never-ending devotion.”

   “From this day forward, I reaffirm my love for you, and this ring is a symbol of that love.”

From the “Amber Spyglass” "I will love you forever; whatever happens. Till I die and after I die, and when I find my way out of the land of the dead, I’ll drift about forever, all my atoms, till I find you again… I’ll be looking for you, every moment, every single moment. And when we do find each other again, we’ll cling together so tight that nothing and no one’ll ever tear us apart. Every atom of me and every atom of you… We’ll live in birds and flowers and dragonflies and pine trees and in clouds and in those little specks of light you see floating in sunbeams… And when they use our atoms to make new lives, they won’t just be able to take one, they’ll have to take two, one of you and one of me."

We know not how much longer these two have to love not only each other but all of those around them, what we do know, what we surely cannot doubt, is that love, true, unending love has and will eternally persist in the hearts and minds of both Shirley and Al, it is with great pleasure that I reaffirm their love and vows before you today.

You may kiss your bride