hospice

Death is very personal, and not to the person who is dying. Also it is.

We’ve banned the “I’m dying” phrase in my home. No, we’re not dying of laughter. The person in the next room, is dying.

This isn’t my first meet with grief. Won’t be my last time. So, here is why it’s deeply personal but not about you, at all.

One day, you are standing in line at the Post Office picking up your mail. The person in front of you is taking their sweet time. You have to get to Costco before they close. Before that, you need to wash your car. Fill up your tank. “Hurry up fucker.” It’s 8 am but you don’t have all day.

Terminal illness changes that: Need to, to Get to.

One day, it’s 7 am and you know your grandmother has been awake since 5 am, watching the news, with a black coffee, in a yellow, ceramic coffee up. It’s the same mug she used to fill with warm milk when you were little. On nights where you couldn’t sleep. Cold, fridge cereal and warm milk. Just a regular weekend-night for you. Little you. Not older.

The next day, you’re embracing each other in front of an emergency room entrance. You’ve held each other for a life time. You’re holding each other together, this time. Can we go back to needing: go to the bank before closing, strolling Costco for the latest monitor, because she can see ALL her documents displayed on three monitors. Work, work, work. She is up by 5 am but is at the office, or is she? Where is she?

Then comes cancer. Did you hear? No, did you hear? No. My grandmother - but she is my friend someone else says! My grandmother - no, she’s my best friend. My grandmother - No, she’s my sister. My grandmother - She is my colleague, I’ve worked for her, with her, for years. Can I see her? It’s me. No, it’s been two months and she doesn’t even know who I am. She won’t know you . I am, who she says, I am. If I’m James Dean one day, then that’s who I am. The next time she sees me (in a few seconds) I’ll be her grand daughter again. Our doors are open, but please stop walking through them. She’s trying to sleep.

See? Deeply personal. Not about us at all. Fifteen minutes visits: hand holding, praying, playing along, or are we playing a long.. a long time like this? Deeply personal to us: My grandmother. Who can shift the room’s energy with an entrance. Now, she’s shift eyes of the people who probably had a million things to say, she’s skin and bones now. I will feel her, in my bones, in my mind, in my heart. For the rest of my life.

Now, standing behind that stranger in line at the Post Office, who is taking their sweet time, don’t they, realize that your grandmother doesn’t have time left. As a matter of fact, you don’t even know how much time. Will I be doing this, next month? Do I want to see her decline for even more time? There’s nothing I’d rather do. Wait… that’s not right! None of this is.

You’ve stopped decorating in October because what’s scarier than losing someone you love. And also, you’ve lost track of time. Is it so we don’t have markers of time, for her, or for us? Someone please pass the turkey and also a tissue. I’m now celebrating Christmas in November. Wait, my grandmother asks, Where are we? What’s your name? Well, I’m your grand daughter, but they’re your: daughters, sibling, friend, colleague and neighbor. Everyone play nice.

We are all losing someone.

#Cancer #WarmWishes #Grief #Hospice

Hi, my name is TessAmara. I'm here because caregiving—especially at the end of life—is both the hardest and most sacred work I've ever done.I’ve spent countless nights holding my mother’s hand through sundowning, pain, and silence.I wrote a book called Let the Weak Be Strong to preserve the truth of those moments—the love, the grief, the fight to stay present.I'm looking for others who understand what it means to show up when everything hurts.I believe in legacy, emotional honesty, and the power of storytelling to heal.#MightyTogether #Caregiving #Grief #Hospice #Memoir
#MightyTogether

3 days of breavement leave is not enough time. I lost my Grandpa on Monday and I had to come back to work today. It isn’t enough time. Yes he was on hospice for the last few months fighting cancer and dementia and yes I knew this was coming but it still isn’t enough time. I’m so god damn angry. It isn’t enough. #angry #Grief #Hospice

If you pray, please send some prayers for my grandma and my family. My grandma is 92, her 93rd birthday is in 6 days. She lives with my parents and I, and has been in long term hospice for about a year after having a stroke. She was doing well until two weeks ago when she was in respite care for five days... when she came home the change was unbelievable. She could no longer walk and was extremely weak. The nurses/aides did not get her out of bed, did not change her clothes, and did not shower her. Her nurses/aides from hospice were not allowed in the facility “due to COVID”. The facility administration says that’s not true, that they were told they could come.

We are devastated. That nursing home is the reason my grandmother has entered the final stage of her dementia, and will probably not make it to New Years. I don’t even think she’ll make it to Christmas. She has been bedridden for the past three days, is rarely awake, and barely speaks, and when she does I can’t really understand her.

At this point we’re just keeping her comfortable and waiting for the inevitable. My parents and I have gotten sick from being so worn down and stressed, and unfortunately my mother had to be tested for COVID today as her doctors suspects she has it, which means both my father and I, not to mention my grandma, have been exposed. We won’t know for 48 hours if she’s positive or not.

I’m just really sad, overwhelmed, stressed, and feeling like crap right now. Prayers would be greatly appreciated. #Prayersneeded #CheckInWithMe #Hospice #Dementia

My grandpa on my dad’s side is not doing well in hospice. We got a call Sunday morning saying he is unresponsive, not eating, and on oxygen. I don’t even know if I get to see him again. My grandma on my mom’s side is also not doing well. She can barely walk upstairs. I’m afraid that it’ll be our last Thanksgiving with her. Why can’t I just get a break this year. 2019 was shitty enough with my dog dying. I just wish I could see my grandpa again, even if it’s the last time. My family tries to cheer me up but I’m so mad and sad. I wish I got to actually see him more, but COVID happened. I wish my uncle wouldn’t only call when things were going bad. I don’t want to go to therapy, I just want to see my grandpa. I don’t want my dad to be sad now. I don’t know if I can take anymore loss in my life. #Hospice #Depression #COVID19

Due to issues with my current palliative provider began the process of looking for another. New agency, whom I like so far, has suggested I'd be better served on hospice as they could provide almost everything at home and bring some continuity of care, something i currently struggle with a lot. Would love to hear of others experience. Especially with difference with palliative and hospice. TIA for sharing! #Hospice #Dysautonomia #GastrointestinalDiscomfort #Gastroparesis #MotilityDisorder #FeedingTube #ivfluids #Pacemaker #PureAutonomicFailure #FailureToThrive #ChronicIllness #chronic pain

My mom is in hospice. No one is looping me in about her care. I don’t know anyone’s names. I’m trying but it’s exhausting. I feel like I have no control over the situation. And every time she comes out of a drug fog she’s confused and agitated and nasty to me. One of my friends barely talks to me anymore. Another one won’t tell me anything about her life because mine is harder. And now I’m starting to feel like I’m annoying other people too. I know it’s all coming from the stress about my mom and how she’s talking to me, but I don’t know what to do. I’m even worried my therapist doesn’t like me. Is this normal? Part of grief? Or something else...ugh #Grief #Hospice #Anxiety #Friendship