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Monthly Archives: April 2016

Diamonds in the sky

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It looks like there is a diamond in the middle of that bright green new foliage. Alas, it is a raindrop, caught just so on the plant…caught just so by my cell phone camera.

My brother asked me to hang out with him. It was such a surprising request that I stumbled over responding. Not that I mind hanging out with him, but his wife doesn’t really like it when he and I are together. I think she is jealous of him having fun…maybe because she doesn’t get along with her only sibling? I’m not sure. But when she is with us, she tries to keep us separated because she doesn’t like how he behaves with me. How does he behave? He has fun. It’s a sad situation.

Anyway, when he asked me to hang out with him, I asked if it he was expecting our respective spouses to join us, as Hub had plans that he couldn’t change. He said no, that his wife had plans, so it would just be us. He suggested we go to a local (large) plant nursery to walk around. I said sure, but I wanted to cry. Mom and I used to love to go to this nursery to walk around and, of course, to buy stuff. She loved gardening and plants, and we loved spending time shopping for stuff. But since my brother asked me to go, I figured he needed to connect with someone and I wasn’t willing to let him down. So we made plans and we went.

We haven’t had rain here in over a month, but when my brother came to pick me up it was pouring out. We decided to go anyway, with umbrellas, and just deal with the rain. By the time we made it to the nursery, the rain had mostly stopped so it turned out to not be a big deal. While we were walking around, I saw this plant with the “diamond” hovering in the center of the new growth. I took the picture because it was pretty amazing. But it made me sad that my mom wasn’t there with us to enjoy the beauty. It made me sad that my brother never  wanted to join Mom and me when we went out to these nurseries together. My brother and I walked around, talked, joked, laughed, and just spent time together. We occasionally spoke about Mom and about what was going on with her estate, but mostly we talked about the plants we were looking at. Plants we liked, plants we didn’t like, plants he already had that were thriving or not. My brother has kept himself somewhat removed from the family because of his wife…because of how she behaves. Because most of us tolerate her only because we care about him. Mom worried about him a lot. I know she wished he had been happy, but he never seemed to be. We wondered if it was because of her or if it was something else. I know now it’s probably a little of both.

I am trying to stay connected with my siblings and my father. It’s awkward, which seems weird because we are mostly a close-knit family. My mother was the heart of our family. She was the one who connected all our lives. Although I try to talk to my father as often as possible, and stop in to see him, it’s difficult. We don’t have a lot to talk about except taking care of bills and Mom’s estate. I try to find things…but he doesn’t have any hobbies and he doesn’t have any interests. And right now, he doesn’t want to do much. I don’t want to step into Mom’s shoes and keep everyone connected or be the go-between for everyone. So I have to step back and allow everyone to find their own way to communicate. I know it’s difficult for them but it’s also difficult for me. Both stepping back and keeping in touch.

There are times when I forget for just a moment that she’s gone. When I remember again, it’s painful. I think of her often and that’s okay. When I talk about her, it hurts. When I think about how much I miss her, it hurts. I’m still finding myself in situations where I wish she were still here, that I could still talk to her, that I could still see her. That’s where the tears are. Just walking up to her house or seeing the spot where we used to hang out on her deck hurts. It’s like feeling the loss all over again…repeatedly. It makes it so much harder to go over and see my father, because walking through their doors hurts.

And mother’s day is approaching. Every commercial on television is for mother’s day gifts. The cards and signs in the grocery stores. The radio. It’s everywhere. And I want to curse and scream and I’m so jealous of people who get to spend mother’s day with their mothers. For the past fourteen years Hub and I have hosted mother’s day for his family and mine. Last year, Mom was in radiation therapy so she was tired, so Hub spent mother’s day with his mother while I spent it with mine. It was the first year we separated for mother’s day. This year I’ve told him to go to his mother’s and be with her, but he’s resisting. His mother understands, but really I want to be alone on mother’s day. I want to pretend it’s just another day. I want to be able to cry by myself if that’s what happens.

This is so hard.

 

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Pacman chunks

WOKKA WOKKA Pacman eating the little dots while he chases the ghosts.

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Hub and I were driving somewhere the other night and we were talking about my mom. Lots of my thoughts and conversations right now are centered there, so it’s no surprise. Bless my wonderful husband for just letting me talk when I need to and not getting frustrated that I keep bringing things up.

Anyway, I was telling him how weirded out I was that I’m not panicking all the time and feeling anxious about the whole situation. I’m sad…I mean, so far beyond sad that I don’t even know a word to describe the feeling. I understand wholly what is happening, but it’s been happening in these Pacman chunks, so I think it’s been easier to absorb. Not that any of these things are easy to come to terms with, just that I haven’t been faced with all of it at once…so far.


I started this post on March 28th at 9:20 in the morning. My mother went into the hospital that evening at 5:30. Initially I was going to let this post go to the trash bin, but today it struck me again, and I wanted to continue with it from this side of her passing.

I miss my mother intensely. I think of her all the time. Things happen all day long every day that I want to tell her and so it hurts me when I realize over and over again that I can’t share my days with her. I’m sad.

I lost my mother in these Pacman chunks. She took her first real downturn just after Christmas day. Those were when the brain metastases made themselves known. Mom’s attitude changed, she became uninterested in engaging with anyone, and she was throwing up a lot. It was at that point that Mom started withdrawing from her normal activities…with others and with me.

We used to talk every night at 9:30pm, for as long as I’ve been living outside of her house (that would be 22 years) with the exception if one of us was away on vacation. When the mets started, she stopped calling me on a daily basis. Besides the 9:30 call, we would also talk on the phone periodically during the rest of the day, but now she stopped making and answering any phone calls. We took Mom to brain radiation, which resolved some of her symptoms–most importantly she was able to recover from the vomiting and motion sickness every time she moved–but she really never resumed calling me on the phone. Of course we saw each other daily because we live nearby and I was at her house all the time, but in the evenings after I left to go home, I wouldn’t speak to her until I went back to her house the next day. Sometimes she would answer the phone if I called, but sometimes not. The first chunk was the phone calls.

A couple of years ago, I introduced my mother to the game Words with Friends. I used to play against one of my brothers and other random people, and I told Mom about it. She asked if she could play against me–she and Dad used to play scrabble all the time but she said he tried to cheat, so they stopped playing–but the only way I knew to play WWF was either on Facebook (which she refused to join) or on an iPad. Hub and I had two iPads that came from one of his bosses. One was an older iPad, the other slightly newer. So we loaned Mom the older iPad, taught her to use it, logged her into WWF, and we began playing on a nightly basis. When she would go up to her bedroom in the evenings, she would play her turn. I would go up to my bedroom around the same time, and I would play my turn. Through the evening, we would play back and forth on my laptop and her iPad. We could pretty much make it through a full game in one night. Even after she stopped calling me at night, she would still play WWF every couple of days. When I saw her during the day she would apologize for not playing very much the night before, or for not playing at all. I would tell her to play when she felt like it and not worry about it. Eventually, and not too much time later, she stopped playing altogether. The second chunk was the WWF games.

Somewhere along the way, around the time the mets in her brain kicked in, she stopped wanting to get out of the house. Since this past fall, she’s been in and out of a wheelchair. Initially, she had a deep muscle spasm in her back that left her unable to bear weight on the leg on that side. She was moving around in a wheelchair because she couldn’t stand. Even then, though, we were going out with the wheelchair. I got pretty good at getting the wheelchair in and out of our minivan or her car (if my father was driving), so we still went shopping at the grocery store or at the craft store or at the yarn store. We even went to some craft fairs and such. I know she hated the wheelchair, but we made it work. Shortly after the radiation for the brain mets, the lymphedema in her legs got bad, so she wasn’t able to walk around…and that left her in the wheelchair full time. The fatigue from the radiation contributed…she never really recovered from that. At some point, she was only going out to her radiation appointments, then after that only to her lymphedema appointments, but that was it. She stopped wanting to go to the store, or even going outside at all. Over the last months, I could barely get her outside onto her expansive deck–when it was warm and sunny enough–which was something she loved to do. The last thing we did was when Hub and I took her and my father to see some botanical gardens. It was a week before she died, and it was a beautiful if tiring day. But up until that day, she hadn’t been out of the house for anything other than medical appointments for months. The third chunk was spending time outside the house.

Everything seemed to really go downhill after the brain mets appeared. Even after the radiation, which helped a lot of her symptoms but seemed to leave her exhausted and drained, she only got better in certain ways. The symptoms of the brain mets dissipated for the most part, but her energy and her interest were both low. She was having more trouble seeing things, concentrating on things, and finding motivation to do much. She seemed to be pretty concentrated on the lymphedema…not terribly surprising considering it was in both legs and it impacted her ability to move around as well. But other than the lymphedema and the wrap appointments, she lost interest in everything else. Including her crochet. She made a few attempts at a project that was supposed to be a baby gift for my cousin, but it didn’t go very far. Even trying to talk about that project, or the projects I was working on, didn’t hold her interest. Crocheting is how we got through most of her illness…the surgery, the recovery, the chemo, the days where she was too exhausted to move, the days where we sat outside in the sun and crocheted. The chemo hats we made, the preemie hats we made. We talked about crochet almost every time we were together. We crocheted a lot of the time we were together when she didn’t want to (or couldn’t) do anything else. She crocheted on the last cruise she took with my aunt and uncle. She crocheted through her first pelvic radiation. Through recovery from the pelvic radiation. Through the next sets of chemo…on and on. Crochet was how we spent time, how we passed time, how we shared time. The fourth chunk was crochet.

She stopped engaging with me even when we were in the same room as she got sicker. Weaker. She would sit on the couch or in her wheelchair and stare at the television. I’d try to ask questions or just talk and sometimes she would respond, most times she would keep looking at the television. I knew she could hear me, I knew she understood…this was when she was very lucid and I was sitting close enough for her to hear me. She just seemed to be removed. She refused to talk to most anyone on the telephone and if we asked if so-and-so could come over to visit, she would say no. If my Aunt and Uncle came over, she would engage with them on and off, but sometimes not even with them. Too may people in the room and she got overwhelmed and shut down even more. Even when it was only the two of us in the room, more often than not she would keep her gaze trained on the television and not respond to me. The fifth chunk was responding and engaging with me when I was in the room with her.

Good, bad, or otherwise, she really didn’t start losing lucidity until the last few days of her life. By this point, even though she had been lucid and aware of us talking with her, she wasn’t really engaging. So the lucidity was a change, but it didn’t actually change much. We were still having one-way conversations with her, we just weren’t sure how much of it was getting through. Sometimes she would turn her head to look toward one of us, but most times not. Her blood sugar was spiking (I almost feel like that was her body’s way of shutting down in a painless way), which left her looking and acting more and more drugged. But still I held her hand, I touched her, I rubbed her feet with lotion. I stroked her arms. None of these things had any kind of real response. The sixth chunk was the lucidity.

Then I lost her physically. The final dot. The final chunk.

Wokka wokka wokka. I lost her that way, like little dots being consumed by a yellow sideways pie-head. These things happened over the course of three months (give or take), so I had some time to grieve those losses. I had some time to try to get used to the changes. Even so, I still grieve the losses, I still feel the changes. Make no mistake about that. I just wonder if Mom tried to disengage in this way, to make it easier on the people around her. Consciously or unconsciously.

I don’t know. I know I miss her. I know I miss each of the chunks…and the chunks that I didn’t focus on in this post.

 

 

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Living in it

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.

 

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The end of days

****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.

 

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Why am I so tired?

***this post was previously scheduled ahead of time. you might have already seen “Where do broken hearts go” which indicates that Mom had already passed. I wrote this post below a week before her actual passing.***

Normally this would be me asking this, but this time it was Mom.

We wanted to take Mom to see some local gardens today. But this morning was a bad morning for her. When we got her into her recliner in the family room, she said to me, “I don’t know why I’m so tired.”

All she does is sleep and drink, really. She’ll eat bits and pieces of actual food, but mostly she is existing on juice, boost or ensure nutrition drink, hot chocolate, and hot tea. Some water, too. She tells me she’s only dozing, but I think she’s actively sleeping. I watched her some this morning while she slept/dozed, and she made faces, a few noises, but her breathing was fast. I thought it would be slow, but it’s not.

Why is she so tired? Because her body is shutting down. She’s actively dying.

How do I answer her? I didn’t. I shrugged, and moved to talk about what we’re going to do when we get to the gardens today. I had hoped it would be sunny and warm, but for the moment it is still overcast and not quite warm yet. At this point, though, it is what it is. Because in my heart I don’t believe she’ll be able to go at a later point.

My brother from out of state is driving in this weekend to stay for a little while. I had a terrible thought today as to whether he’ll make it in time or not. I know some of that is my anxiety taking over and I tried to let the thought go. I can’t make predictions, I can’t KNOW what is going to happen, I can’t make my brother get here in time or not. I can only get ready to go out today, to show Mom the beautiful plants that she loves so much. Gardening is her thing, she loves plants and trees and everything.

I’m back from our trip to the gardens. It was a long trip, more in the car than in the gardens. I think Mom was happiest that she was outside in the air, even though most of the gardens we saw were inside (as that was where the accessible routes were for the most part). Although Hub went with us, Mom didn’t engage as much as either he or I had hoped. She looked at a few things when we pointed them out, but otherwise she let Hub talk and joke and she just held her head up on her hand. Just like she does at home.

I watched bits and pieces of that hospice video again, trying to remind myself that everything Mom is doing is exactly what is supposed to happen. That although death is incredibly sad, it’s not BAD. It’s what happens next. It’s part of our cycle of life. That sounds like a terrible thing to say, but it’s the truth. I don’t WANT my mother to die, but the truth is, she IS dying. My best hope for her is that there is no pain at any point, and that she doesn’t feel awash in fear or anxiety. I don’t know what else I could hope for.

We brought Mom home, got her back into her recliner, and after a drink of some juice, I could see she was already looking to withdraw into sleep again. I told her good night and said I’d see her in the morning. Hub and I came home, made dinner, and crashed.

I spent some time talking to someone about getting some extra help in the house for my parents (the woman who took care of my grandmother, who now lives in another state). She had some recommendations and suggestions for me, and I’ll take them to heart. I’m hoping that by Monday we’ll have something set up. I hope we can squeak through the next couple of days without too much trouble. I just hope I’m doing the right thing at the right time.

 

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