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Category Archives: guilt

Links for help on a day like today

If you are struggling today (or any day)…reach out for help.

 https://www.facebook.com/AFSPnational/photos/a.69058467304.61653.27817332304/10155670794262305/?type=3&theater 

And also, this article is helpful:

http://mashable.com/2017/10/02/las-vegas-shooting-emotional-coping-mental-health/

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Teaching them

One of my brothers lives with my father. He has always lived with my parents, though I have no idea why he decided to do so. He’s fifty-three and was born profoundly deaf due to my mother getting German Measles when she was pregnant with him. He’s been wearing hearing aides since he was a baby, and my parents made sure he went to a regular public school so he could learn to live with hearing people. The school system he was enrolled in offered individual assistance for him so he didn’t fall behind in his classes. He’s lived a pretty normal life, went to college, worked retail jobs, got his degree, and has been working in the government for many many years. He maintains relationships with lots of friends–hearing and deaf–and participates in all kinds of activities. He helps arrange and run racquetball tournaments for both deaf leagues and hearing leagues. He travels, stays in hotels alone, drives daily to work, works among his colleagues, goes to a gym, sees his doctors…etc etc. He’s a pretty smart person, though sometimes his communication skills lag a bit. Most people deal with it pretty well, and so does he.

But he’s never had a romantic relationship that we’re aware of, though he has tons of friends. He’s never wanted to go away for any long period of time, never wanted to move out, and often relied on my mother to do things for him. Things he could do–though they might take some extra effort from him–but for whatever reason he chose not to do them. My mother did the things for him out of love, I’m sure. My brother helped (and still helps) take care of their current house and the property it sits on. He would cook occasionally and would stop at the grocery store to pick up a few things when my mother asked. He’s terrible at cleaning, but he takes good care of their dog. Now that Mom is gone, he handles the majority of the bills at the house, does all the taxes for him and my father, and he helps my father with most of the technology in the house.

There are times that he lets things slide that normally my mother would have handled. He and my father, living together like bachelors in their house now, often overlook things because they don’t want to deal with them. I have tried very hard to stay out of my mother’s role, because I do not want to be her. I don’t want to follow them around and make sure things get done, or be called upon when they don’t want to handle things. When things fall by the wayside, they scramble to handle them but it seems to be okay the majority of the time. One of the last issues I have struggled to step out of is their dog. I hate to see their dog suffer because they aren’t staying on top of things, or because they aren’t paying her enough attention. She was really my mother’s dog, her companion and her shadow, especially during Mom’s cancer. My father doesn’t pay the dog too much mind, and his memory is pretty shitty. I often worry that he lets her out into the yard and then forgets about her. It has only happened once or twice since my mother’s death, and neither time did she suffer too much discomfort before I discovered the lapse. Fortunately, their dog barks hysterically if she wants to get back in the house, so there have been times when I hear her barking and I call my dad to remind him she’s outside.

We are all heading to the wedding next weekend. It’s being held less than 30 minutes from our home(s), but it’s an evening wedding. It starts right before dinnertime and we need to be there early enough to get parking and walk to the venue. That means our dogs will all need to have someone come in to feed them and let them out after dinner. Hub and I have been talking about this for weeks, and we finally interviewed a couple of dog-sitters from Rover.com. We’ve used dog-sitters before, but we didn’t really like their service as they were ONLY drop-in and they would only promise to stop in on the dogs in a two hour window. So we interviewed a couple of people and found someone who will come in and stay with our dogs for the whole evening. They have a pretty active evening routine (including dinner), so we figured we’d pay the person to stay the whole evening. It’s not terribly expensive and we’re over-protective owners, so we went ahead and hired someone.

I said nothing to my brother or my father about their dog. They’re grown men, they take care of their dog, they knew the wedding was coming up for six months. If they were concerned about their dog, they should have done something. And I didn’t want to put my nose into their life and ask or suggest they make arrangements. It sounds petty, but I don’t want to be their mother or their wife. GROWN ADULTS.

Hub and I decided to have the dog-sitter come in once before the wedding so the dogs would have a chance to get to know the sitter. We hired her for a drop-in visit (30 minutes) to let the dogs out and play with them while we were out for a longer-than-normal dinner with my family. We all drove together to the restaurant, so when we got home, the sitter was still at our house (dinner didn’t take as long as we expected). Immediately my brother wanted to know who was at our house when he saw the car parked in front of our garage. So I told him we were trying out a dog-sitter in advance of the wedding. He sort of frowned and started to ask me questions, but I only said we’d met her a few weeks prior and then we went home.

Two days later–this is now ten days before the wedding–my brother sends me a message via googletalk to ask me how the dog-sitter had worked out. I said she was good, the dogs seemed to like her (but they like everyone!), so we were set for the wedding. His next question was, “Can she handle three dogs?” Because he hadn’t made any arrangements and he figured he would just leave his dog at my house and so he’d be all set without having to do anything! Again, I felt petty, but I don’t want him thinking that he’ll just let us always handle things and he’ll tag on. I told him that it wasn’t appropriate for our sitter to take care of his dog when she hadn’t met the dog. This was exactly why we had interviewed people in our house to see them with our dogs, and then did a trial-run before the wedding. Also, his dog is not the easiest to handle, especially when she’s in OUR house versus their house. And I told him all of that. I said he needed to find his own sitter, who would come to his house and take care of his dog. So he said there was no time left (TEN DAYS), and so he’d just have to come home early from the wedding to take care of his dog. Guilt and manipulation…because he hadn’t bothered to do the responsible thing for his dog and his plans. Six  months they’ve known about the exact time and date for the wedding.

I felt badly. I had guilt so built up that I didn’t sleep that night thinking about it. I knew he was mad at me, but I didn’t want to teach him that if he didn’t do what he was supposed to, I would clean up after him. I didn’t want him to think that he could let things slide because he figured I would step in. Teaching people how to treat you is important, and I was teaching him to treat me like his sister, not his mother.

TWO DAYS LATER he asked me to help him get a dog-sitter. I had already given him the Rover.com website, so I didn’t understand why he needed my help. He opened the app on his iPad and through every step he asked for my input. HE’S A COMPUTER PERSON. He’s been in IT in the government for probably 25 years…why the hell did he need me to stand over him to help him with an app that I’ve NEVER EVEN USED. Hub and I were using the Rover.com website, not the app, so I’d never seen the app before. *sigh* We contacted several people, set up two for interviews, then he wanted me to be there at the interviews. As it turns out, the first person who came the very next night was the person he hired because the second person flaked out on us.

So he’s got his dog-sitter. We’ve got our dog-sitter. I persist in teaching him and my father that I am not their mother or wife, and that I am not going to step in and take care of things for them. I persist in reminding myself that I am teaching them to be independent human beings, capable of handling their lives. Obviously, if they seriously need me, I am there for them. But these simple, every-day things? They need to learn to handle their business like adults. And if they don’t handle their business, they are going to have to deal with their consequences.

Still, I feel petty and mean. And guilty. And I resent my brother’s attempt at manipulating and guilting me into doing what he wanted. The sooner he learns that he needs to handle things on his own, the better our sibling relationship will be. I hope.

In preparation for the wedding, I am getting my hair color fixed on Tuesday. I have my fingers crossed it goes well, because I’m not sure I could get it fixed again in between now and the wedding. I also have PT for my impinged (and frozen!) shoulder along with a neurology appointment this week.

And then I see a psychic medium on Friday. Should be an interesting experience and I’m not entirely sure I believe in them. I hope to report back on all the goings-on next week.

 
 

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Fake (my) news

Do you listen to yourself talk? Do you have an internal editor who sifts through what you say before you say it? Do you tell people the truth when they ask you questions?

I don’t remember when this happened, but one day I remember listening to myself talk as if I were watching the conversation from outside of it. Not in a derealization kind of way, just in a way of WTF am I doing? Someone had asked me something and I was answering them, and the words coming out of my mouth were–technically speaking–lies. I wasn’t lying with malice, I was lying because I didn’t want the person to know how shitty I was feeling. I was lying because I didn’t want to have to deal with the eventual questions of why and have you seen a doctor and have you tried x. I was lying because I didn’t want the person to pity me, or to worry about me, or to think less of me for my health issues.

I’m in pain almost every day, from various parts of my body. Possibly from my mind, who knows. I feel lousy the majority of the days in recent years…not pain specifically, but sometimes it’s anxiety, sometimes it’s due to a known illness, sometimes it’s what my mind conjures, and sometimes it’s some unknown ailment. I get tired of telling people how I’m feeling when they ask. And for the most part, it’s not about them, it’s about me. I don’t want to deal with whatever the blow-back is, as I said above.

And on this particular day, I came to a realization of how often I lie (without malice) to people. Clearly I do it without forethought or planning…and in some cases it seems to be an automatic response. I try not to do it with Hub (he can often see through me anyway) and I definitely try not to do it with my therapist. Sometimes I will edit the “truth”, even though I suspect both of them know it. But with everyone else? I lie. I give fake answers. I edit the things I’m saying to meet the person I’m conversing with.

I hate how are you? I despise how are you feeling? I always feel put on the spot to answer in a manner that the person asking can understand or respond to in a manner that works for them. I absolutely abhor when Hub asks me what hurts or does something hurt? Again, no one else’s issue other than mine, but this is the truth.

I don’t remember a time when my body didn’t harbor pain. I don’t remember a time when my body didn’t report some form of illness–real or anxiety-induced. I don’t remember a time when I didn’t lie to people about those things.

How are you? Shitty.

How are you feeling? Shitty.

What hurts? Everything.

Giving those answers…what does it do for me or for the person asking? Nothing. It puts me on the spot to explain, clarify, defend, respond…and I don’t want to anymore. I would very much wish that I wouldn’t need to anymore, but in lieu of that, I lie.

How are you? Fine, thanks.

How are you feeling? Good days and bad days.

What hurts? Nothing new or different.

If you can’t beat ’em, fake ’em?

 

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Finding connections

I wasn’t sure what to do this year about mother’s day. Last year I sent Hub off to his mother’s house without me, and I spent part of the day with my brother and his then wife (now ex-wife). I talked with T about this on Friday, because I feel some guilt about not going to my mother-in-law’s to be with her, but I just am not ready yet this year. I know she understands–as does Hub–but I am at heart a people-pleaser, and so the guilt sat heavy with me. In the end, though, I couldn’t make myself go.

My father had mentioned to me Friday evening that he was going to go to the cemetery to visit my mother’s grave and he asked if I wanted to go. I didn’t answer him at that point, but Sunday morning when I saw him, he brought it up again. He said he knew it made me feel “uncomfortable”, but he wanted to make the offer for me to join him. I tried to be gentle in responding when I said to him, “I don’t feel uncomfortable about going, but the truth is, I don’t feel a connection to Mom there. I don’t feel it to Nana and Papa, either…it doesn’t work that way for me.” (my grandparents are buried in the plots next to my mother). For real, I feel more of a connection to my mother in her “den” closet, where she had a bunch of books stashed on a bookshelf…gardening, trees, cookbooks…I stumbled on them at one point and ended up crying. Because that’s my mother. The cemetery is just a marker for her physical body’s last resting place, but it has no history for me with her. My father only said OK and that he was okay to go alone, which I had to trust was true.

Somewhere around ten a.m., I texted my brother (the one with the ex-wife) to see what he was doing that afternoon. He said “nothing”, so I asked if he wanted to do something. What I really wanted to do was go back to the nursery where Mom and I used to go all the time, and where he and I went after she died. I also offered up the opportunity for him to come to my house to help me bake peanut butter cookies, which he (and my other brother) scarf up as fast as I can make them. His response was a preference to go to the garden center, so in some corner of my mind I knew it was the right thing to do. Even Hub said as much when I told him my plans for the afternoon while he was with his mother…he said my mom would be happy to know I was spending time there with my brother.

So after lunch, my brother and I set out for the nursery, which is about 20 minutes away. We talked a lot in the car about how he’s been doing with his depression and his medication, as well as some other health issues he’s dealing with. But once at the nursery, we talked about plants. We walked around the big place for about two hours–which leaves me exhausted and in pain today unfortunately–just chattering and touching plants and gagging over the high prices. We bought absolutely nothing, but it was worth the time and energy and pain, because it felt right. This brother and I, we have always been the closest of the siblings–with the exception of his married life where he withdrew from the whole family…and even then I tried to stay in touch with him as much as it was possible–so this connection felt good to renew. I know he’s struggling with his depression and his newly single life and his desire for a partner and…well, lots of stuff. And part of today was to remind him that he’s not alone. Doing that for my mom and for him made the day work for me.

I miss my mother so terribly. Every day. I feel like my identity without her has been lost. I don’t know how to get it back…yet. I’m still searching, and maybe someday I’ll find my purpose again.

I described (to T and a friend) the run-up to mother’s day as “being poked with a cattle prod when you’re already on fire”…and it’s true. That’s so much how I felt with all the television commercials and the holiday displays in all the stores and the radio commercials and facebook and instagram and on and on. I worry that it will always feel this way, this painful, this sad, this lost. Living without my mom has changed my life and changed me at my core. I don’t know how to adjust to that, or that adjustment is even possible. Somehow, I have to find a way forward. Last night I watched Bad Moms on television while Hub was still at his mother’s. There’s a point in the movie where Mila Kunis is talking to her movie daughter and she basically says, “I know you can make it through this because I’m your mother and I know what you’re made of.” It was such a dumb, funny, stupid, crazy movie, but that scene and those words (which I can’t remember exactly) really hit me hard. I know my mother believed in me and believed in my strength and my ability to persist. I hope I can find a way to continue to make her proud in that aspect as I try to find my way.


 

As a minor update, I finished all my bactrim pills successfully. I don’t know how much I feel better, but so far it seems the smell is gone, so I take that as success. I wasn’t too much more itchy the last day and half, so that was good. My stomach isn’t entirely back to normal yet, but I know the bactrim stays in your system for several days following the last pill. So hopefully another couple of days and my stomach will be better.

 

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Who do I do for?

Maybe about a month ago, I said to my father, “What do you think about having the family over for a Memorial Day barbecue?” He agreed, and although I offered to host the dinner at my house, he said it was fine to have it at his house.

I made this suggestion for a couple of reasons.

  1. My aunt and uncle (my mother’s brother and sister-in-law) have been trying to get us to come to gatherings at their house or their daughter’s house since my mother’s passing two months ago. In both cases, I declined, as I was not ready. My father went to the mother’s day gathering, and came back saying it was very difficult for him.
  2. My brother has told me how he wants “the family to stay together” and that he doesn’t want to give up “family get-togethers” even though Mom is gone. (I have so much more to say about this but…enh)
  3. I don’t want my aunt and uncle to become disconnected from my father and/or from the rest of my siblings and me.
  4. I wanted my father to have something to look forward to

I figured this would be very low key, so I didn’t make a big thing of it. I invited my aunt and uncle, my cousins, a friend of my mother’s, and my local siblings. I told people to bring any kind of side dish that they liked to eat, but that we would provide the grilled meats. I didn’t think about anything until I needed to buy the food a few days before, and even then I kept pushing it out of my head.

I thought Memorial Day would be easier because we don’t associate the “holiday” with my mother. In past years, if we ever did anything for Memorial Day, it was an impromptu cook-out at my house mostly because Hub wanted to grill anyway and sometimes my parents and brother would join us. I thought this would make everything easier.

When I went over on Sunday to bring some food ahead of time to my father’s house, I asked him if he wanted help setting up in the dining room, which is where we normally host more than the immediate family. But he wanted to have everyone in the kitchen. We went through a bit of work to make that fit, but he seemed to want to stay away from the formal dining room where we usually have gatherings. I understand, so I didn’t discuss it with him, we just did what we needed to for the kitchen.

There was a snafu with the grill, but we managed to get food grilled and put out on the island for people to serve themselves and then sit at the table together. I felt very disconnected from everyone. I spent most of the two hours disengaged and quiet. No one seemed inclined to hang around after eating.

My aunt–the one who can’t seem to get past her own grief for her mother–put her hand on my shoulder on the way out and said, “It’s a good first step, right?” I wanted to punch her in the throat. Instead I said, “thanks” and turned away.

We cleaned up, then everyone pretty much left. When I thought my father was okay, Hub and I went home. I was a bit annoyed at the “side dishes” that people brought (someone brought a little package of pre-cut fruit, someone else brought a little bowl of cut veggies, and someone brought a bowl of cole slaw), but I really just wanted the evening to be over.

I didn’t want to have this get-together. I didn’t want to be the one arranging it. I didn’t want to be there. I hated the whole thing. I didn’t do any of it for me. If it had been my preference, I would have not had any get together. I’m not ready. I’m not interested. It hurts too much.

My brother, the one who has said how upset he is that the family isn’t getting together? He’s the one who hardly ever spent time with my parents. He’s the one who doesn’t stop by and visit, or instigate any get-togethers. He never hosts anything at his house. He never arranges any family get-togethers. He never even calls to say “we’re heading out to dinner, want to join us?” He says he is going to invite our father out to eat to stay in touch with him, but he hasn’t done it. My brother’s wife saw our mother maybe once in the last difficult two months of her life. She just didn’t care. My brother suffers from major depression. He is being treated for major depression. I want to do what I can to help him. I don’t know how he is helping himself in this arena of staying in touch with the family. I think he is relying on me to do it, and I don’t want to do it. If he wants the family to continue to get together, he’s going to have to participate. Because I’m not going to step into my mother’s shoes and take over. It isn’t me. And I don’t want the things he wants. If he wants those things, he’s going to have to do them.

My father…I don’t know what he wants. I don’t think he ever HAD to do anything with regards to family gatherings, so he just doesn’t do it. If I don’t do it, will the family slow fall away from each other? My father doesn’t want to do anything. He never had to pay bills–my mother did that–so he has no clue what money he has or doesn’t have. He doesn’t know about his the house or car insurance. He doesn’t want to know. My brother–the one who lives with him–is basically doing all the bills. And the grocery shopping. And the cooking.

I basically just spent the last ten minutes sobbing. I’ve cried myself to sleep the last two nights. Today I just feel overwhelmed and completely overemotional and this isn’t even the first time I’ve cried today. Apparently not the last, either. As soon as I catch my breath, I just start again.

I miss my mother so much I can’t even… I just can’t even. Period.

I’m in pain. My body hurts. I saw my massage therapist but it didn’t help and she’s going on maternity leave so I won’t see her for months. I’m not sleeping. The acupuncture isn’t helping. My health anxiety is suffocating me. I haven’t been able to write anything (my books or anything other than the blogs) for years. Since before my mother got sick. I can’t figure out the paperwork for my mother’s bonds.

I feel like … nothing. I don’t want to engage with anyone. I don’t want to do anything. I don’t have the energy to be the person everyone else seems to need me to be. Not right now. Not today.

 

 

 

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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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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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