If you are struggling today (or any day)…reach out for help.
And also, this article is helpful:
This morning I had the opportunity to talk to Mom’s oncologist on the telephone. Technically speaking, the phone rang at about 8:30am and when I saw the caller ID I had a moment of panic. What was wrong? What had happened?
Then I remembered that there was really nothing left for me to worry about with her doctor.
The doctor had called to pass along his condolences. He’d been out of the country during Mom’s final crisis and death. He called to talk to me about what had happened with her final days, at the hospital, and then at home. I would guess some of this information would help him build his experience with this type of cancer–which is still pretty rare in the grand scheme of things–and some of it was closure for him. We’ve known him for almost two years, and I really do feel he had compassion for our situation all the way through. On the phone he said pretty bluntly that he wished this had never happened to Mom, that we’d never met, that he could turn back time and change things for us. I thanked him for the thought. Then I fought back tears as I told him how much my mother liked him, how much I like him, how appreciative I was that he fought so hard for Mom. I thanked him for putting up with my brother–who questioned him at every turn and threw tons of trials and homeopathy and other things at him–when he really didn’t have to. He told me it was part of his job, but I disagreed with him and I told him as much. Not every doctor could have–or would have–put up with my brother’s tactics or attacks. My mother’s doctor did so with aplomb, and with great understanding for what my brother was dealing with. I thanked the doctor for taking such good care of Mom, and for giving us two years to be with her. It certainly wasn’t a given considering Mom’s aggressive cancer.
When I hung up the phone, the tears were stuck in my throat. Later, I spoke to my father who had called Social Security to see what he had to do in regards to my mother’s passing. He told me how hard it was to have the conversation, and I told him I understood how he was feeling. It’s hard to talk about her. It’s hard to talk about what happened. It’s hard to talk about our lives without her.
Hub’s friend was coming over tonight to hang out. He’s been Hub’s friend for a lot of years. He’s helped us move a couple of times (and we’ve helped he and his wife move a bunch of times), and he’s even helped us with things at my parents’ house over the years. He’s a good friend to Hub, and vice versa. He and his wife know my parents pretty well. I couldn’t even stay downstairs to say hello, I just wanted to come upstairs and hide. I didn’t want to have to hear another condolence. Another “I’m so sorry”. It isn’t their fault…what else do you say? What else do I say other than “thank you.” It’s just another chink in the armor every time someone approaches with that face or that voice or that head tilt that tells you what is coming. Sympathy, empathy, kind words, compassion. I know why and I understand, but I just couldn’t take it again today.
I want to hide from everyone who knows me because I don’t want to hear the sympathy. I don’t want to hear the pity. I don’t want to be reminded every time I talk to them that my mother is gone. How are you? How’s Dad doing? One day at a time.
It fucking hurts, every minute of every hour of every day. And it isn’t anyone else’s fault. I just want to live in it by myself. I don’t want to tell everyone how I’m doing or how I’m making it through.
Is this the anger? I thought the anger would be at my mother for being sick, or for dying, or for leaving. Instead I just feel ANGRY. And I just want to be alone. I know there’s no wrong way to grieve, so I’m living in it and living with it. And it so sucks.
****WARNING**** this post contains frank conversation about death and dying. If you are triggered or distressed by this kind of imagery or thoughts, please don’t continue reading.
Mom has since passed away. I am thinking a lot about her last days. Regrets linger over things I couldn’t change.
I was trying to get private duty nurses in to help us take care of her in an appropriate manner. I know my father was struggling to keep Mom feeling comfortable and such, but I don’t feel like he was tending to her hygiene in a good way. He was thinking like a husband, not like a caregiver, and was letting her stay in dirty clothes because he felt it was easier for her. Mom ended up with a bed sore from sitting in one position all the time, and she was sitting around in dirty shirts and pants (not filthy, just not fresh clothes every day). I didn’t realize what was happening because I wasn’t living there until after the bed sore appeared and I found out how he was taking care of her. Then Dad and I tried to take care of Mom, but it was a struggle, especially since I wasn’t there all the time. I’d get calls at 11:30 at night, or 2 in the morning, asking me to come help him clean her up. At that point, they were still struggling to use the bathroom in some normal fashion…and it WAS a struggle. Then as Mom’s capabilities decreased, Dad still wanted her to use the bathroom, which required even more of my assistance more often. It wasn’t that this was an issue for me–despite my lack of experience in caring for an adult in this situation–it was that I didn’t LIVE with them. Yes, I live close by, but it’s not the same…he wouldn’t call me until it was too late and he was in the bathroom with her and needed help. And the rest of the time he didn’t make her move from her position in the recliner…which meant she was probably sitting in wet and/or dirty pull-up adult diapers. It was a sad and painful situation for all of us.
I struggled to find someone to come help us, in part because my parents didn’t want anyone to come in and help, but also in part because I was afraid to make the wrong decision on who to bring in. In the end, I found a group to help us, referred to us by one of the women who cared for my grandmother in her last years. Unfortunately, that woman was out of state now, so I relied on her network of people who still lived here. The main issue is, I regret not forcing this on my parents earlier, because maybe we would have avoided the bed sore. Maybe it would have kept Mom a little more comfortable, and maybe it would have helped Dad hold onto more energy.
I also struggled with the idea of forcing hospice on my parents. Although I knew it would be helpful, again my parents refused to use the service until I basically gave them no option. And it was really too late. We were formally enrolled in hospice on a Friday night, and Mom passed away five days later. Well, it wasn’t completely too late, because the hospice nurses were helpful for those last fourteen hours or so, just in a crisis kind of way.
The biggest regret isn’t even something I have control over, which I realize makes no sense. How can I be regretful over something I didn’t do? Anyway, my father was watching Mom’s blood sugar because it had been going higher. The doctor said it was steroid-induced diabetes, but now I’m thinking it was Mom’s body’s way of shutting itself down in a way that wasn’t so painful. But really, the point here was, her sugar went way up, Dad panicked and called 911, and they took her to the emergency room. There, they went by protocol and began giving her fluids and heart medication (her heart rate was high), then sea-sawing back and forth with medications trying to get her sugar to the right level. Not too high, not too low…while forcing out the acids from the ketoacidosis she was dealing with. The fluids, though, were an issue. She became swollen in the emergency room and then later in the room when she was admitted. She became less and less aware of what was happening around her (she was pretty unaware when they called 911), but she was still verbalizing some things. When they went to change her and clean her up in the room, I shooed everyone out (other than the nurses, obviously) for privacy, but I stayed so she wasn’t alone. And she verbalized a lot during that time…a lot of chanting NO NO NO and OW OW OW when they moved her around. I hope to heaven that was involuntary and that she wasn’t really feeling those things because it just about killed me at the time. When they finished taking care of her, I ran out of the room in tears. And I was absolutely furious that my father kept refusing pain medication for my mother. He wanted her to “wake up and recognize” him. She was long beyond that, but he kept refusing the pain meds because he thought it was the medication and/or the high glucose that was keeping her “drugged up”. No matter what we did to try to show him that she was in pain, he refused to see it. He was so deep in his own pain over losing her that he refused to see beyond that. I’ve since talked to T about it and am trying to accept that he was dealing with the situation the only way he knew how, but there’s still a part of me that hurts at how he treated her in those last days/hours. She should have had pain meds every time they changed her and cleaned her, or moved her, or did anything to her.
It’s my understanding from the hospice research I did that giving Mom all those fluids likely hastened her death, and potentially put her in more discomfort because the fluid goes to places it shouldn’t…like lungs. So there’s another part of my regret…that she had to be in the hospital, getting medication after medication, and hours and hours of fluids. And that she was in pain and discomfort for so long. Even before she was admitted to a room (we got to the ER at 5:30pm and she was admitted to a room at 7:30am the next morning), I was asking how and when we could take her home. The hospital staff wanted to stabilize her from the ketoacidosis…and my father agreed with them. By the time we were able to convince him that we were going down a road we didn’t want to travel, we rushed through to get her home that evening. And my uncle was able to convince my father that Mom needed morphine. We made doubly sure that she got another round of the morphine before they put her in the transport ambulance and transferred her home. And once again, I was the one who had to push to get Mom home…I was the one who organized the transport, the oxygen, the meds for home, the private duty nurses to be waiting at home for us to arrive…and on and on. I’m the baby in my family, and yet I was the one dealing with everything.
We had more issues at home with the oxygen tank. No matter what plug we put it in, it would shut down after 10-20 minutes. T says it was Mom’s spirit shutting down the unit because she didn’t want the oxygen. I wouldn’t be incredibly surprised to know that was true. The hospice nurse arrived and immediate administered more morphine because Mom’s face was scrunched up. Then she began going over instructions on how and when to give medication at home. We had a private duty health aide staying overnight and she learned the information (along with my sister-in-law) from the hospice nurse. The hospice nurse–along with my siblings and my husband–made me go home for the night at that point. Even though they were still figuring out the oxygen machine, they had plenty of people there to handle things–plus the hospice nurse–and I was really so far beyond shut down that I couldn’t have helped even if I had wanted to. I had been going since 8am Monday morning, right through to that time which was 11:30pm Tuesday night. I hadn’t slept or napped any of that time, and I’d barely eaten, though I had managed to try to stay hydrated as much as possible. This was the point where I reported to T that I really gave up. Someone else had to take over what was happening and what needed to be done. Where in the hospital is had been all me handling things, at the house at that point, there were seven or eight people sharing the responsibilities. I wish some of those people had stepped up at the hospital, so I hadn’t felt so alone with all the responsibilities.
The next morning, our “regular” hospice nurse came in to talk to us, to evaluate Mom, and to give us some more education on what was happening. She changed Mom’s medication schedule, administered some more meds, and then she sat us all down in another room. She said that from her experience and based on her examination, she didn’t anticipate that Mom had much time left. She said she wasn’t a doctor or God, but she had two decades of experience and she doubted we had more than 24 hours. She said she’d been surprised before, but she wanted us to understand that we were very near the end.
She wasn’t wrong.
Within the hour of that statement, Mom stopped breathing and her heartbeat slowed to a stop. Dad was with her, the rest of us were in the next room with the hospice nurse and had rushed in when we heard Dad yelling. Only one of my brothers and his wife weren’t in the house with us when Mom passed. The hospice nurse was still there and she continued to monitor Mom with her stethoscope until Mom’s heart had completely stopped. The minutes and hours following are a mishmash of images and phone calls and information and scheduling for things to happen. I was the one doing all of that, and although I’d like to say I remember none of it, a lot of it is burned in my memory banks.
I have traumatic flashbacks of those last thirty plus hours. I’ve started working with T about it, because there are too many images, sounds, and smells in my head that are haunting me. Already one session/set of exercises with T have helped. I go back on Monday again to continue working with her.
This was not how I had hoped my mother’s last days or hours would come about. I know many will say “it is what it is” but that doesn’t stop me from feeling sad about it. The best thing that came out of this is that we WERE able to get Mom home in time for her to pass there. That’s what she wanted.
Posted by meANXIETYme on April 9, 2016 in angry, anxiety, cancer, change, crying, death, ER, family, fear, feeling helpless, feeling lost, grief, guilt, loss, love, mom, overwhelmed, stress, therapist, tragedy, trauma
When I was twenty-one, I moved out of my parents’ house and into my own townhouse. With the support of my parents and my grandparents, I was able to purchase a three story townhouse about half an hour away from “home” and move out on my own. I’ve mentioned in the past, but I’m the youngest of four children. At the time I moved out, two of my older brothers were still living at home and yet I was ready to be on my own. My mother, on the other hand, wasn’t quite as ready. She worried, as moms are wont to do. Especially since I was living on my own, and no one knew my comings and goings.
So we established a routine that made her more comfortable…at nine thirty p.m. every night, she would call me to see how my day went. When I got to work in the mornings, I’d call her at her office to say good morning and let her know that I’d made it in without issue. On the weekends, I still spoke to her at night, but not always in the mornings. Even when one of my brothers moved in with me for about a year, I still kept the routine with Mom. Even when pre-hub Hub moved in with me (and commuted with me to work), I still kept the routine. When Hub and I got married, the routine remained. Seeing a pattern? Moved into our new house, same routine. Of course there were days we spoke more than once or twice a day, and there were days when she was traveling (or Hub and I were) when we let the routine pause, but it always picked right back up.
When we moved into houses right nearby each other, we still talked at nine thirty every night, with the exception of travel. It was odd, but we talked even more on the phone once we lived closer. And we hung out in her backyard on her deck, or in her house, sometimes for hours at a time. Or multiple times in a day. We’re close, Mom and I. Really awesome friends. We always find things to talk about. To joke about. When she got diagnosed with her cancer, we started our crochet together, so there’d be times when we’d just be sitting together, crocheting quietly. But no matter, we’d still talk at nine thirty at night (and oftentimes at nine thirty in the morning).
As I’ve blogged about, Mom isn’t doing very well at all. Her MRI showed the cancer has spread to her brain. The symptoms she’s dealing with are supposedly from that spread, and she’s started radiation to try to alleviate symptoms. It’s not a good prognosis, as the radiation might not help and/or might not make much difference in life expectancy. And of course, radiation has side effects. We’re all devastated…my father most of all. He’s terrified to lose her. She’s terrified to leave him. Mom’s feeling lethargic all the time, rarely ever opens her eyes, sits in her recliner with her head in her hand. Sometimes she’ll talk to whoever addresses her, sometimes she won’t. Moving even to sit forward in the recliner makes her want to throw up. Going to the bathroom by wheelchair is even worse. Food is her enemy, as it all makes her feel sick. She’s barely drinking. She’s in a terrible depression. I’m positive she’s worried sick about my father. She’s not in pain, per se, but she’s not comfortable and she’s not okay.
Since she’s been feeling poorly–just about Christmas day–she’s not called me at nine thirty. She doesn’t call me in the morning. She doesn’t call me during the day.
I’m programmed, after twenty-two years, almost 365 days a year, to look up at the clock at nine thirty and get her call. Technically, her clock has been two minutes faster than mine here in recent years, but it’s a minor detail. The phone isn’t ringing. The appointed time ticks by. I try to do other things. It’s a terrible, horrible look into my future without my mom.
Don’t get me wrong, I’m over at the house every day. I’m trying to help my father during the daytime when it’s just the two of them at the house. I’ve gone to the doctor’s appointments as usual, I’m going with them to every radiation appointment that I can, and I’m bugging the crap out of my mother. I’m talking to her whether she responds to me or not. I needle her. I try to make her laugh. I do whatever I can to remind her that she’s still her with us. I touch her as often as I can without jostling her. I push her chair when my father lets me. I offer her water, I pass her the puke bucket that she carries in her lap. I ask her for help with my crochet, or point out something about the project I might have in my hand. I ask her if she needs to use the bathroom before the test or before we leave. I do everything I can to stay connected with her, even though she doesn’t seem to want to connect right now.
But at night, my twenty-two year connection is frayed and pulling apart at the threads. My head pops up at nine thirty, but the phone doesn’t ring. And it makes me so sad I can hardly stand to take in a breath. She’s still alive, she still right there, so close by, but I can’t have that link anymore. And I’m so not ready to give it up.
Although Mom’s oncologist gave me his opinion on prognosis time-wise, I don’t actually believe him. I think it’s a pat answer that they give out. I don’t want to speculate as to time, but I don’t think it’s a long time. I’m even more worried about that because of the depression. I know Mom doesn’t want to be like she is right now. Her head is all there, but her body is just being destroyed from the inside out. And although it might not be “pain” that she’s living with, it’s also not a good quality of life that she has. Especially with having to go to radiation once a day every weekday for ten days, and every movement leaving her dry heaving…it’s bad.
We’ve gotten a ramp installed temporarily so that getting Mom in and out of the house in the wheelchair is easier. The next step is to try to find some help for my father, so he doesn’t have to be responsible for Mom’s care 24/7 (even though I try to help and my brother who lives with them does do some stuff to help). I don’t know how they’re going to take to that, but my dad is already fragile with his own health issues. I know he’s devoted to my mother, and uber protective, but he can’t wear himself down and expect to be able to keep going. I’m there as often as I can during the day–sometimes two hours or so, other times for five or six hours–and I’m exhausted (especially since I come home and do more work, like getting their trusts in order, dealing with their insurance, their investments, some business work for Mom…just keeping up with day-to-day stuff for them). He has to be hitting a wall every day. I just need to figure out how to find help. That’s my mission starting Monday, I hope.
With my own cancer check coming up, and Le Moo’s visit to the vet in the same week…it’s more stress looming, mostly because of the timing, since I won’t be able to be with Mom those days, or help them get to the radiation appointments. I’m sick about it, but I can’t be in two places at once. I’m a mess, you guys. I’m holding it together at Mom’s, but by the time I’m walking home from their house, I’m in tears. I cry doing the laundry. I cry and pace the family room as I try to come to terms with what is happening. I cry feeding the dogs. I totally cry when I’m outside with them, walking Butthead on her leash. I cry in the shower. I cry on the toilet. I have a headache and stuffy nose pretty much all the time because of the crying. I’m not sleeping, my head is spinning with things I have to remember, and things I have to do, and things that need to be handled and taken care of.
I am one of those people who hate to make phone calls. I will do everything I can to not have to make cold phone calls. I hate making appointments. I hate calling strangers. I hate calling people we know who aren’t a part of my immediate inner circle. I’m having to do nothing but make those calls. Talk to those people. Chase issues. It’s stressful for me, but there’s no one else to do it. It wears on me. I’m delegating as much stuff as I can, but every time I ask someone to do something, I am reminded (by my own self-critical brain) that I’m the one not working and my brothers (and husband) are all working full time. I’m the one with the time. I’m the one here all the time. So I am plugging along, doing the best I can, and asking for help when I can. But it’s a lot for me. And I’m tired. I came upstairs after dinner and thought, “Phew, it’s the weekend, finally.” But the truth is, this is a 7 day a week mission. If I don’t go over and help my dad tomorrow, he’s doing it all alone. I might not be making calls, but I’ll be working emails and doing paperwork, and I’ll be hanging with Mom and trying to engage with her. And I’ll be getting her food and trying to keep my Dad on track with his own schedule. There’s no weekend from this. There’s only forward and go.
Nine thirty is gone again for another night. And I want to cry. Again.
Posted by meANXIETYme on January 16, 2016 in anxiety, cancer, change, crying, depression, endometrial cancer, family, fear, feeling helpless, feeling lost, grief, guilt, loss, love, mom, overwhelmed, stress, tired, tragedy
Oh wait, yes I can.
Ever hear someone say (or you say), “I can’t even imagine…”? I’m sure I’ve said it a million times, but in the end, the truth is that I can imagine it. It’s not that I can actually understand what someone else has lived through, but I can certainly imagine it. Because my imagination is fucking fantastic…and for someone who has anxiety issues, this capability SUCKS ROCKS.
See that pot there on the counter? You think it’s a benign old pot, just sitting there. But someone who can imagine “it” will start thinking…
What if that pot is on the stove?
What if that pot on the stove is filled with water?
What if that pot on the stove is filled with water and the burner is on?
What if that pot on the stove that is filled with water and the burner is on, so the water is boiling?
What if that pot’s handle is canted just right, and is hanging over the edge of the counter/stove?
What if that pot’s handle is hanging over the edge of the counter/stove and X (a child, an adult, an animal) brushes the handle and the pot is knocked off the counter/stove and thus the boiling hot water burns X horribly?
What if the hot water that has spilled over X not only burns them, but it disfigures them permanently?
Or kills them?
See, you thought it was just a stupid pot sitting in the middle of the counter, didn’t you?
On a similar note, I live about an hour away from where a small plane fell from the sky into a house (three houses, actually), killing three people on the plane and three people in one of the houses. The house that had the most damage (from the damn WING of the plane) had three people in it. A mother and two very young children. As if this wasn’t horrible enough to hear, the media had to tell us repeatedly how the mother was found huddled in a small, windowless bathroom, her body over top of her children, in an attempt to shield and/or comfort them in their last moments. Can you even imagine? Yes, goddammit, I can. And now, thank you very much, that image is burned into my head, following me around as I attempt to continue with a normal day in my life.
I am a creative person. Sometimes that both sucks and blows.
I had the television on and the news broke in. My first thought is always of the day–9/11–and where I was and how it came over the television. These days, it’s usually local political news that cuts in, but not today.
Two explosions at the finish line for the Boston Marathon. People are injured, probably dead. It’s a trigger…probably for a lot of Americans. My heart is with those people. I don’t have the words. I hope those who will need the help mentally in the aftermath are cared for properly.
Also, I send my hopes that the First Responders are cared for appropriately as well.
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