Posts Tagged ‘hospice’

(I just found this post that I never posted exactly 364 days after my Mom died. I wrote it while my Mom was dying. I changed verbs to past tense and decided to post it now on the 365th day, 1 year, after my Mom died. This is my view and my view alone. I wasn’t physically alone, but I was alone inside my head through this).

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A JOURNEY I DIDN’T WANT GO ON

If I could I would give it back.

If you looked through this blog you notice I love to travel, take journeys, explore and go on adventures. We move every year. We don’t get to live in our home. We just don’t sit still.

On our first family trip to Florida from New York

After Jim’s last Project Manager gig ended in Puerto Rico, we went to our home, waiting for the next project, and where it would take us. Then Covid-19 hit the U.S., and we have been home bound ever since. This is not the journey.

Easter, Probably 1967

This journey is part of everyone’s life. Death. Not mine, my Mother’s. My “Mommasan”. The woman that brought me into this world. And I helped her, on her way out.

Me and Mom at Cypress Gardens FL in the early 1970s

My Mother felt bad and my step-father brought her to the ER, they did a CT Scan and wanted her to stay, but Mom with her short term memory loss just wanted to be home. Three days later my Mom was back in the ER, this time she stayed in the hospital. My home is only 1.5 hours away from my parents, I was there fast. Of course, with Covid-19, I was not allowed into the hospital, but due to my Mom’s short term dementia, I was finally allowed in so someone was with her at all times. Mom had 2 blood transfusions, her abdomen drained, and a biopsy of a mass they found in the wall of her abdomen, her omentum.

Yes, a mass. No good news. But this is not yet the journey.

Mom and I with Grandpa

The journey happened once we got home, because all Mom wanted was to be home. She was clear, if it was her time, she wanted to be home. At home she went downhill fast, and we did not even have the results of the biopsy. The Oncologist already was sure it was Advanced Stage 4 Cancer. And it was. She has Cancer of the Ovaries and it already spread to her omentum and maybe even elsewhere. She had internal bleeding, and her abdomen was full of blood of fluids.

Mom did not want anymore procedures, no draining of her abdomen again. Not even another blood transfusion. I made calls to family, they made plans to come.

I was in a whirlwind of helping Mom, Making plans for hospice, texting with family, calls, calls and more calls, setting up a Priest to come, even contacting a funeral home just in case, and all while being calm before the storm.

Mom and I in the 1980s

I saw Mom go from walking with help and chatting normally, to being completely bed-bound in less than 24 hours. I thought my journey of death was going to be a short one, but no Mom rallied when all her 5 of her children, her sister, her best friend, and 2 of her grandchildren came. She was funny, witty, but weak. She would even take bites of food here and there.

Too many sitting vigil, too many personalities, too many just too many. And then most left, leaving my step father, my sister and me to care for Mom. Then the Journey slowed down…to a crawl. I started to google everything. The signs of death. The stages of death. How many times an hour should a dying person pee. What happens if they don’t eat anymore. Bed sores…don’t get me started about bedsores.

My Mom, little brother and I at the Grand Canyon in 1976 on a Nationwide road trip

Oh, and my worst fear, the vomiting bile thing. I googled it. The Hospice nurse said a hospice patient should poop every 3 days, if not, give them meds to poop. If they don’t poop it will come out by throw up. That happened to a neighbor. It was a horrible way to go at the end of it all. So I was very scared for my Mom having that same violent end. I had learned if Mom was not eating, maybe there wasn’t anything to Poop. I prayed to God himself that she would not have to go through that, and I tried not to worry about it anymore. I prepared myself for the worst (not really), but hoped for the best. Is there even a best in this situation?

Although the days start to blend into the next, I learn new things. I was pretty good at interpreting when Mom talked. It was barely an audible mumble, but sometimes I know exactly what she was saying. It just popped into my head. She no longer ate.. Google says a body can last quite a while without food. She got to the point she no longer needed to go onto a portable potty, then I wanted to know how often we should change her adult “briefs”? Google told me to check every two hours. One of my death bed super powers was googling.

Mom and I at the Japanese Gardens in San Francisco 1976

But the one thing I couldn’t find on the internet is any info at all on people with dementia, just short term memory loss, who are in hospice dying of cancer. Through this Journey, my Mom asked over and over and over again, “What is wrong with me? What caused it? What kind of cancer?” Will I get better? Am I going to die? Am I crazy? Are you going to send me to the nut house?” With every one of those questions, my heart broke.

My Mom did not know she was dying. She did not remember anything she was told after 5 minutes ago. It just left her mind. She talked about childhood stuff with her sister, but something that was said 5 to 10 minutes ago, nope. Gone. There is no support for people on this particular Journey. We are the blind leading the blind…to death. We had told her the truth countless times. We had told her she was very sick. We told she had the flu. We told her only God knows. We told her that maybe she would get better. Ok, not me. I never tell her she will get better, because part of me knew she knew. Deep down past her memory loss, she knew.

Mom all dressed up in our first FL home in early 1970s

Since my Mom didn’t outwardly know she was dying, I feared she would never just let go. The advice from friends and family was to make sure you, everyone, told her, that we all will be ok and it is ok to let go. Fine and dandy, but everyone has to tell her that every 5 minutes and it still wouldnt work. I had heard the stories. They all went like this…”The day after seeing my Grandma, she let go and died. We all left Dad to go out for lunch and he died when we were gone.” They were fantasies I had on that Journey. Everytime I went to leave the house I told my Mom Good bye, but then she asked me if I was coming back. I wanted to say, “Nope, this is the last time I will ever see you alive,” but I couldn’t, and just said, “I’ll be back soon.”

My brother left, Mom did not let go. My husband left, she did not let go. Even her sister left, she did not let go. My step father wouldn’t leave for more than 20 minutes and I don’t even think he told her he was leaving every time. She has gotten weaker, stopped eating, was barely talking, she stared off into space, and then started to sleep with her eyes open. I had dying Mom, others got rallying Mom. I was okay with it, I had made peace with Mom dying the first time she told the Patient Advocate in the hospital “If it’s my time to go I want to be at home.” It is her choice and I can not argue that.

Going way back to Christmas probably 1966

I have been avoiding the elephant in the post. The actual dying part. Death was actually my Mom’s Journey. My Journey was being part of her dying. I think everyone should see a baby being born, it is a miracle. I don’t believe everyone needs to be part of this life process. I do not find it miraculous at all. The human body, the machine that it is just doesn’t stop, is breaks down, piece by piece. First Mom stopped walking, then she stopped eating, she lost her strength to suck from a straw, talking was too much work for her, and then Mom lost control of her bladder. Then she got to the point of not even being able to swallow, when she was awake her eyes stare off into nowhere, her cheeks were sunken, most touch hurt her, she had bed sores, and she insisted she needed to get out of bed, that she had to pee, but she already went in her adult diapers. Mom got moved around like a human size human weight doll so we could change her briefs, to position her better, and to bath her. This is dying. My Journey was helping her with all that.

I held her hand, but I didn’t rub her skin with my finger, because she didn’t like that. I made sure the heals of her feet were not touching the bed. I put cream on her bed sores when I changed her briefs. I tried to figure out what her needs were, when she moved her lips I ask if if she wanted water, which we were giving to her through a dropper at that point. I tried distract her when she thought she wanted to get out of bed, by repositioning the bed or her legs. One of the last developments, is she wouldn’t take all her meds that were crushed up mixed with water and put into a dropper. I saw she could still swallows, but she refused. The meds were for pain and for the anxiety that goes along with dying. My own anxiety issues were at an all time high. I took extra meds. The last thing I wanted was for her to have pain or fear. I had to google if she would have pain and fear. Google was my death best friend.

Mom doing her “You Must Pay the Rent” routine

In my Journey, death is slow, it steals the person bit by bit, it breaks them down, it humiliates them, it frustrates them, it haunts them. And it does the some of same to their care-taking family as well. I am not comparing death with watching someone die, I am saying I experience these things in my own way on this Journey. At the end, I did not see my Mom in the shell of what was left of her body anymore. Every once in awhile, we got a glimmer, but it could just be the agitation stage of dying, not her being strong or sassy. I knew she still heard us and I felt she knew who we were, but I don’t know what she was thinking most of the time.

Last photo of us together taken 7 days from her hospital stay.

Sometimes, I broke down, I got weak, I was frustrated, I cried, I was exhausted, and I wanted it all to end. Honestly, I wanted it to end for me just as much as I wanted it for Mom. Does that make me selfish? I was not sure if she was suffering, but I felt she would be more at peace if she moved on. Or was that what just hope? I believed it. A year later I still believe it. I believe she was greeted by those that had moved on before her, even her pets. I didn’t just want to believe for Mom, but I believe that for when I move on too. I know I will see her again, just like I will see my Dad, who died from accident when I was 4 years old. But yes, I was ready, not ever really ready, but ready for Mom to move on.

This is the cute face I want to remember.

I fely like I was living in a Groundhogs Day Movie, but I could not make changes for the outcome to be better. Mom would always die in that movie of mine. We did the same things every day. I am not complaining, I was okay with Mom dying, even if I was never really not ready.

This is the sense of humor I want to remember.

Mom died 365 days ago and I’m still not sure I’ve mourned her. I’ve always been ok with death. My father died young from a freak accident, so I learned early about death. I never had a false sense that she would be here forever.

This is the silly I want to remember.

But she is here forever, in my heart, mind and soul.

Mommasan, Bye for Now and I Love You.

The last good bye after leaving 4 days before her illness got the best of her.

I was just going to start chronicling good bye photos…this was the first and the last .

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