The Unbearable Weight of Being - Part 3
I wish I could say that there was a happy ending to this story, but I can’t. Without my mom either regaining the ability to swallow without choking or returning to her right mind, there was only one way this saga could end. Neither of those things happened. In fact, as the time wore on it became more and more evident that the damage from the stroke was worse than originally thought.
Over the course of the next 3 weeks, my mom was mostly out of it. All attempts to feed her pureed food or thickened liquids, failed. The hospice staff basically kept her drugged to her eyeballs while she starved to death. It took her 19 days of slow, wasting to die. I was there for 17 of them.
There are no words to describe the level of Hell I lived in for 17 days. I have memories of my mother writhing and incoherently crying out for help, only to not respond when asked how we could help. The staff gave her morphine and Ativan on a regular schedule like clockwork. She gota Haldol twice a day.
The staff was wonderful. There were only 6 beds in the whole hospice so they were able to provide excellent, quality care. We were allowed to stay in Mom’s room 24 hrs/day, and they would bring us complimentary food trays at meal times if we were present. The doctor, chaplain and grief counselor saw us every day. They arranged for a Catholic priest to come administer last rites to my mom in her room. I was grateful for that since she was a devout Catholic.
After 17 days, the staff finally convinced me that my mother was holding on because I was still there, and that she wouldn’t die until I went home. At that point, she was still responding to voices- opening her eyes and lifting her hand towards the voice. It was unclear if she could see. On November 19, Mark and I left for Orlando because my flight back to PA left early in the morning on the 20th. Within 6 hours of our leaving, the hospice staff reported that my mother had gone unresponsive.
After Mark dropped me off at MCO on Friday morning, he returned to New Port Richey and spent the next 24 hours in my mom’s room. I called him to check in on Saturday morning (Nov 21), and he told me that Mom was still hanging on, but not responding. After we got off the phone, Mark went into the hospice’s family room to make himself from breakfast. A few minutes later, a nurse came to tell him Mom had died. She had been waiting for him to leave as well.
One of the hardest things I’ve ever had to do was walk out of that hospice room, knowing that I would never see my mom alive again, but I didn’t have a choice. I spent most of my life knowing that I was not the daughter my mother wanted me to be. She spared no opportunity to remind me that I was her biggest disappointment and greatest failure (direct quote.) She hated everything I had done with my life, and most of the choices I had made. I think I was far too much like my father, and my mom spent so much time looking for the person she wanted me to be that she missed who I became.
I could never be what my mom wanted me to be, but I could be what she needed me to be. She needed me to leave so she could die, so that is what I did.
After her death, Mark took care of most of the work of emptying out her apartment and giving away her things. All of her furniture went to other people in the building, and all of her clothes were donated. I kept her computer & printer, her TVs, her personal items, her papers, the picture albums and her beach things.
I flew back down to FL on Dec 4th. We loaded up the Pontiac with as much of the stuff we were keeping as we could and brought the rest to friends’ houses for storage until we could come back down to get it. It took us 3 trips to FL to get almost all of it, and there are still 2 totes of things at a friend’s house.
Mom had prearranged her cremation, so I was able to hold off on a funeral until after the holidays. We held it at the church in Eddystone, PA where she had been a parishioner for over 30 years. Not too many people came because for some reason the pastor wouldn’t let me have the service on a weekend, so we had it on a Monday. I asked people to come dressed in bright colors because my mother loved colorful clothes.
My aunt and her lawyer attended. She was still insisting my mother owed rent. She claimed it was due to my mother “delaying the sale of the house” because she was living there. I argued that the collapsing retaining wall, frayed electric wire and big hole in the front steps did more to delay the sale than my mom’s continued occupation of the property.
My aunt proved to be an even bigger petty, spiteful bitch than she had ever been. To this day, I have zero desire to see her or hear anything about her, and if I find out she’s died, I just might show up at her funeral playing “DING DONG THE BITCH IS DEAD” at full volume.
I ended up handing almost $9500 in “rent” over to her greedy ass because my lawyer bill was almost $8000, and I just wanted the whole thing to be over. Now I wish I’d fought and just razed the whole estate to the ground, and salt & burned it in my wake. It would have served her money grubbing ass right.
I’m still picking up the pieces. Some days are better than others. I was seeing a grief counsellor for a while to help me make peace with what happened. Intellectually, I know that there was nothing I could have done differently, but emotionally I have a harder time accepting that my mother starved to death while I could do nothing about it.
If anything, the ordeal taught me the importance of a well considered, thought out Living Will that would take into account a situation where I was conscious, but non compos mentis. People think Living Wills are for when you are comatose, etc, but in this case, my mom was awake. She just wasn’t aware. Still, I know that if I had found someone willing to ignore the Living Will and put in a feeding tube, the likelihood of my mom just ripping it out was almost 100%. My mother couldn’t stand anything on her face or down her throat. In fact, the hospital staff in the ICU had to cuff her wrists to the bed rails because she kept tearing off the oxygen mask and IV needles.
So really, she never would have tolerated a feeding tube, and without one, she was going to die no matter what I did.
There’s a part of me that’s relieved it’s all over. Ever since my mom’s accident in 2014, she was in and out of the hospital, she lost the ability to drive, and her diabetes (and all the side effects of it) got exponentially worse. I spent almost 2 years worried about her, and dreading every time the phone rang identifying a Philadelphia exchange. I half expected to get a phone call telling me she was dead at any moment. Now I no longer have to worry about her.
Part of me feels guilty for being relieved. But another part is grateful that she isn’t suffering any longer, because I have no illusions that my mom was in pain and struggling. At least now her ordeal is over, and I don’t have to worry about her any more.
It still hurts. There’s a lot of complex feelings around all of it because my relationship with my mom was so complicated. I am happy that she got 6 weeks in Florida. I know that she was happy in that brief time, and while I had hoped that she would have had more time, I was glad for the time she did have.
If you know anyone who wants to move to Florida, New Port Richey is a very nice little town North of Clearwater.
But that’s been my life for the last 3 years. Not a whole lot of fun but some good parts. In Sept 2014, Mark & I went back to Hawaii for our 20th wedding anniversary and we had a vow renewal on Maui. It was very nice. This year we are going to New Orleans. I am looking forward to that very much.
Hopefully it won’t be another 3 years before I post here again, but one never knows. In the meantime, I hope all of you are doing well, and had a better 2013-2016 than I did.
Take care and be safe all.
Over the course of the next 3 weeks, my mom was mostly out of it. All attempts to feed her pureed food or thickened liquids, failed. The hospice staff basically kept her drugged to her eyeballs while she starved to death. It took her 19 days of slow, wasting to die. I was there for 17 of them.
There are no words to describe the level of Hell I lived in for 17 days. I have memories of my mother writhing and incoherently crying out for help, only to not respond when asked how we could help. The staff gave her morphine and Ativan on a regular schedule like clockwork. She gota Haldol twice a day.
The staff was wonderful. There were only 6 beds in the whole hospice so they were able to provide excellent, quality care. We were allowed to stay in Mom’s room 24 hrs/day, and they would bring us complimentary food trays at meal times if we were present. The doctor, chaplain and grief counselor saw us every day. They arranged for a Catholic priest to come administer last rites to my mom in her room. I was grateful for that since she was a devout Catholic.
After 17 days, the staff finally convinced me that my mother was holding on because I was still there, and that she wouldn’t die until I went home. At that point, she was still responding to voices- opening her eyes and lifting her hand towards the voice. It was unclear if she could see. On November 19, Mark and I left for Orlando because my flight back to PA left early in the morning on the 20th. Within 6 hours of our leaving, the hospice staff reported that my mother had gone unresponsive.
After Mark dropped me off at MCO on Friday morning, he returned to New Port Richey and spent the next 24 hours in my mom’s room. I called him to check in on Saturday morning (Nov 21), and he told me that Mom was still hanging on, but not responding. After we got off the phone, Mark went into the hospice’s family room to make himself from breakfast. A few minutes later, a nurse came to tell him Mom had died. She had been waiting for him to leave as well.
One of the hardest things I’ve ever had to do was walk out of that hospice room, knowing that I would never see my mom alive again, but I didn’t have a choice. I spent most of my life knowing that I was not the daughter my mother wanted me to be. She spared no opportunity to remind me that I was her biggest disappointment and greatest failure (direct quote.) She hated everything I had done with my life, and most of the choices I had made. I think I was far too much like my father, and my mom spent so much time looking for the person she wanted me to be that she missed who I became.
I could never be what my mom wanted me to be, but I could be what she needed me to be. She needed me to leave so she could die, so that is what I did.
After her death, Mark took care of most of the work of emptying out her apartment and giving away her things. All of her furniture went to other people in the building, and all of her clothes were donated. I kept her computer & printer, her TVs, her personal items, her papers, the picture albums and her beach things.
I flew back down to FL on Dec 4th. We loaded up the Pontiac with as much of the stuff we were keeping as we could and brought the rest to friends’ houses for storage until we could come back down to get it. It took us 3 trips to FL to get almost all of it, and there are still 2 totes of things at a friend’s house.
Mom had prearranged her cremation, so I was able to hold off on a funeral until after the holidays. We held it at the church in Eddystone, PA where she had been a parishioner for over 30 years. Not too many people came because for some reason the pastor wouldn’t let me have the service on a weekend, so we had it on a Monday. I asked people to come dressed in bright colors because my mother loved colorful clothes.
My aunt and her lawyer attended. She was still insisting my mother owed rent. She claimed it was due to my mother “delaying the sale of the house” because she was living there. I argued that the collapsing retaining wall, frayed electric wire and big hole in the front steps did more to delay the sale than my mom’s continued occupation of the property.
My aunt proved to be an even bigger petty, spiteful bitch than she had ever been. To this day, I have zero desire to see her or hear anything about her, and if I find out she’s died, I just might show up at her funeral playing “DING DONG THE BITCH IS DEAD” at full volume.
I ended up handing almost $9500 in “rent” over to her greedy ass because my lawyer bill was almost $8000, and I just wanted the whole thing to be over. Now I wish I’d fought and just razed the whole estate to the ground, and salt & burned it in my wake. It would have served her money grubbing ass right.
I’m still picking up the pieces. Some days are better than others. I was seeing a grief counsellor for a while to help me make peace with what happened. Intellectually, I know that there was nothing I could have done differently, but emotionally I have a harder time accepting that my mother starved to death while I could do nothing about it.
If anything, the ordeal taught me the importance of a well considered, thought out Living Will that would take into account a situation where I was conscious, but non compos mentis. People think Living Wills are for when you are comatose, etc, but in this case, my mom was awake. She just wasn’t aware. Still, I know that if I had found someone willing to ignore the Living Will and put in a feeding tube, the likelihood of my mom just ripping it out was almost 100%. My mother couldn’t stand anything on her face or down her throat. In fact, the hospital staff in the ICU had to cuff her wrists to the bed rails because she kept tearing off the oxygen mask and IV needles.
So really, she never would have tolerated a feeding tube, and without one, she was going to die no matter what I did.
There’s a part of me that’s relieved it’s all over. Ever since my mom’s accident in 2014, she was in and out of the hospital, she lost the ability to drive, and her diabetes (and all the side effects of it) got exponentially worse. I spent almost 2 years worried about her, and dreading every time the phone rang identifying a Philadelphia exchange. I half expected to get a phone call telling me she was dead at any moment. Now I no longer have to worry about her.
Part of me feels guilty for being relieved. But another part is grateful that she isn’t suffering any longer, because I have no illusions that my mom was in pain and struggling. At least now her ordeal is over, and I don’t have to worry about her any more.
It still hurts. There’s a lot of complex feelings around all of it because my relationship with my mom was so complicated. I am happy that she got 6 weeks in Florida. I know that she was happy in that brief time, and while I had hoped that she would have had more time, I was glad for the time she did have.
If you know anyone who wants to move to Florida, New Port Richey is a very nice little town North of Clearwater.
But that’s been my life for the last 3 years. Not a whole lot of fun but some good parts. In Sept 2014, Mark & I went back to Hawaii for our 20th wedding anniversary and we had a vow renewal on Maui. It was very nice. This year we are going to New Orleans. I am looking forward to that very much.
Hopefully it won’t be another 3 years before I post here again, but one never knows. In the meantime, I hope all of you are doing well, and had a better 2013-2016 than I did.
Take care and be safe all.