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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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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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Unnoticed and feeling the guilt

I am having a bad day. I am going to whine about it. You are forewarned.

Technically speaking, this is day 2 of the “bad day”. On Monday, I decided for no apparent reason that it was time for a haircut. I don’t like haircuts, they give me anxiety. More specifically, making the appointment and going to the salon (and being IN the salon) gives me anxiety. The haircut is not that big a deal for me anymore…I know it will grow back. I know if it’s a bad cut, I’ll deal with it somehow. It’s just hair. I came to that conclusion when about 8 years ago I cut off 23″ of hair and sent it off to one of the organizations that makes wigs for children with cancer. It was the same way that time…I made the decision, I went, it was over with, I survived it and the ensuing days/months/years with short hair (for the first time in 30 years). Since then, the change from long(ish) hair to shorter hair doesn’t bother me. But having to call to make the appointment…and then survive the appointment, they are anxiety-making.

I am not good at small talk. People think I’m good at it, but I hate it. I spend days before trying to think of things to say and/or talk about. Then I feel like an idiot having the conversation. I don’t know the stylists, I don’t know their lives or their interests…I just feel dumb. In addition to that, I have anxiety over the hair washing station. I hate having my head resting on that thing because it hurts. I’ve heard of instances where people can have strokes from resting against those tubs (true? not true? does it matter to anxiety? nope). I also end up with muscle strain from being stretched to sit with my head on that tub thingy. Sometimes I wash my hair at home and go with wet hair so they don’t have to wash it again. But then I feel like the haircut isn’t as good because they didn’t see my hair ahead of time, dry, to see how it needs to be cut. I also feel judged when I’m sitting in the salon…just because I feel like it’s a frufru place. I feel out of place there.

Okay, so I called and made an appointment with the stylist I saw last time. She does an okay job and isn’t overly talkative. She looks like Pink! I’m just saying, she’s a bombshell. I’m always intimidated by her. But I wanted to get something fun done and she’s the queen of that kind of stuff (her instagram rocks). I found a color I wanted for my hair and brought it with me. She did the color job, cut my hair, then blew it out (without asking). I both love and hate having my hair blown out. I like it because it’s different and I can’t do it at home. I don’t like it because it doesn’t look like me and then I never know how my cut really is with my normal hair. I left the salon (after leaving a rully nice tip because that’s how I have to be) and came home. I wanted my hair to be reddish purple. Yes, I said it. My hair is normally brown. I used to dye it red all the time…oftentimes a very unnatural red because box color is hard, ya’ll. So I came home and I am looking at my hair and it’s reddish. But I see no purple. I had worked myself up to purple-ish hair and it’s just…red. Hub says he sees purplish, I don’t see it. I’m disappointed. I haven’t washed my hair yet so I have no idea if the cut is okay, but even if it isn’t…it just is what it is. And it’s shorter than I expected…as it always is.

So I’m home. And I’m trying to ignore my hair. And I talk to my mother, who only knows I went to get my hair cut. And she’s telling me that my brother (who lives with them) is upset about something he didn’t know about…because he has to know everything. Even when it has nothing to do with him. And I’m one of the people who knew about this…THING that has nothing to do with him. Part of it was my doing. So she asks me to tell him about it and I get mad. I tell him, then I tell him if he has questions he should ask her…which he doesn’t bother to do. He just wanted to be mad and make my mother feel badly. He’s really self-centered and doesn’t think about other people. He’s sure the world should revolve around him. His schedule, his knowledge, his life. It’s very difficult for me because although he’s older than I am, I often feel like I’m taking care of him. I often feel like everyone is catering to him, even though he’s entirely capable of being an adult.

So that was yesterday, and now it’s today. I go over to go with my parents’ to my mother’s lymphedema appointment and I tell my mother than I’m angry with my brother. She takes his side, tells me not to be angry. And I tell her I’m allowed to be angry. Then she tells me she likes the color of the pants she’s wearing. I bought her those pants so she’d have something with larger legs that would cover her lymphedema wraps. I picked out the color for her, I ordered the pants, I did it without asking because I knew it would be helpful. She said she liked the color of the pants but didn’t say thank you to me for taking care of it for her. She didn’t mention one word about my obviously reddish hair. She only told me not to be mad at my brother because “he can’t help it” if he is the way he is (she made him that way because she lets him get away with it) and told me she liked the color of her pants.

I helped her roll her wheelchair into the bathroom so she could go before we left for her appointment, then I sat down in their living room and texted Hub and said, “I feel unnoticed and unappreciated.” He wrote back that he was sorry, that he loved me, and that he liked my hair. I help my mother down the hall in her wheelchair and into the mudroom to get her coat on. We get in the car. There’s no conversation because I don’t initiate conversation. Normally I try to keep Mom occupied, but I didn’t today. We get to her appointment and the therapist starts talking about wrapping Mom’s legs at home. And I’m volunteered. Because my father has no patience. And who else is there? And in my head I’m already thinking of how often I’m going to need to unwrap and rewrap her. What weird hours of the day she’s going to want that done. The therapist tries to train me to wrap my mother’s legs–feet, calves, thighs–so she does one leg and I do one leg. My OCD gets to me, it takes me three times as long to wrap the leg I’m working on versus the therapist (I know, she’s been doing it for 14 years…but it’s my brain hating on me). We finish up and go back to the car. I’m silent on the way home, though I’m texting with another brother about some paperwork we’re trying to finish up for my parents. And we’re talking about the brother who lives with my parents and how frustrated I am.

We get home. I put together all the wraps from the last appointment to take home so I can wash them…because who else is going to? I ask Mom if I can get her anything and she says no. Then she says, “You got your hair cut?” I said yes. That was the end of the conversation. I put my coat on and came home to take care of my dogs and wash the wraps.

I feel like I’m unnoticed and I feel terrible for feeling this way. I wouldn’t be anywhere else. I wouldn’t NOT do the things I’m doing. I wouldn’t not buy the clothes she needs, or try to buy the wheelchair cushion she needs (it’s too hard and it makes my back hurt–not thanks for thinking of it, but can we try finding something different…), or wash the wraps, or go to the appointments or buy the food or supervise the cleaning people or clip her toenails or cut her fingernails or make her soup the way she likes it or  … or… or…

But I’m still a person. I still want to be seen as a person. Their daughter, their sister…not just the person who is doing all the things that no one else is doing. Not the person who had to learn how to read and decipher legalese to figure out their trust paperwork. Not the person who had to figure out how to deal with their bonds, or transferring their accounts into the trust…or how to move all her volunteer work to other volunteers. I’m still me. I’m still part of the family, I’m not just a personal assistant or representative or paid caregiver. I want to be acknowledged, I want to be noticed, I want to be appreciated for the things I’m trying to do to take care of things. No, I want to be noticed and appreciated, period.

I’m tired. I can’t take a break because there’s no one else to do these things. They won’t let me hire someone to help them. And honestly, even if they did, they’d probably want me to be there to supervise them, like with the cleaning people. I’m not able to do as much at my own home as I used to. Laundry falls behind. The dogs get left at home more and more…I don’t see Hub as much. The dishes stack up in the sink or sit in the dishwasher. Things that need to get done are not getting done at all. I feel lost, like I’m losing who I am. And I feel absolutely horrible about feeling that way because I love my parents and I want to do everything I can to help them. I didn’t know this would be so hard. I’m terrified because I know this is only going to get harder as Mom gets sicker. She’s lucid, though she has trouble hearing and remembering things right now. But in truth, this isn’t the mother I remember, even in the last couple of years that she’s been fighting with this. She’s unhappy. She’s moody. She’s short with her temper. She acts like a petulant child. She complains that no one does anything right. I know she’s sick. I know this is incredibly difficult for her. Which is all the more reason why I feel horrible for feeling the way I do.

I try really hard not to be short with her, and I try to do things the way she wants–generally asking specifically what she wants and encouraging her to tell me how she wants it done. She’ll tell me it’s fine, then complain when it isn’t done to her standards or satisfaction. As soon as I walk into the house she starts complaining…about my father, about something that happened or didn’t, about the doctor, the pills, the cleaning people, the phone calls, the crochet, the television…whatever is sitting on her mind. She doesn’t even say hello or ask how I am. She almost always asks about Hub–who we all claim is her favorite child–but she doesn’t often ask about me. That’s another reason why I feel like I’m invisible. If I limp because of my plantar fasciitis, she might see it and say “why are you walking like that” but that’ll be it. Most times she won’t even notice.

I know that’s my mother still in there. I don’t think she knows that I’m still in here.

 

 

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Too much or too little?

I had a session with T today, which was kind of all over the map. Part of what I wanted to talk to her about was V (pt 1 and p2). I haven’t written much about my sessions with V because I haven’t felt like we’ve done what I wanted to do. Very specifically, I approached and began seeing V so that I could attempt to do hypnosis with a therapist who specialized in it, versus seeing a hypnotist who had no therapeutic training. I was looking to get assistance with my insomnia type symptoms (I say “insomnia-type” because I don’t feel I have true insomnia, I just have shitty sleep), which was something V said initially she could help me with. In the end, she preferred not to use “hypnosis” and instead went with “breathing and relaxation” techniques to work with me. As well as EMDR.

I’ve had seven or eight sessions with V, and while I did discover where my “not enough” feeling came from, I haven’t had any progress with my sleeping. And I haven’t felt any other progress, nor has V seemed interested in pursuing hypnosis. I also feel very uncomfortable that at least once a session, she’ll say she’s not sure if X will work, or that she also struggles with sleep but I shouldn’t be concerned it will always be that way for me. I just feel like I’m talking to a therapeutically trained ME. And I don’t want to talk to me… It sounds weird, but that’s how I feel. So I pretty much had decided to discontinue sessions with V, but I’ve never…fired a therapist before. I didn’t want to make V feel badly because I didn’t want to continue. I know it isn’t my issue and she is a professional, but honestly she feels so insecure to me that I hate to feed that feeling by firing her. But I’m not getting what I want from her and I don’t want to continue if that’s the case. I already have T–who works well for my on-going needs–I don’t need another regular therapist.

So when I sat down after dinner, I crafted a short but complimentary email, and after re-reading it a couple of times, I sent it. Now I wait to hear back. Unh.

My plan, at this point, is to give acupuncture a go. I’ve had it before and although it didn’t help at that point (for horrendous menstrual cramps about 16 years ago), I know it does work for a lot of things for a lot of people. I just need to work appointments into my schedule, because I know acupuncture is an on-going treatment that often works better with multiple appointments per week, or at least one every week for a lot of weeks. But I definitely want to give it a try, for the fatigue/insomnia as well as chronic pain. T approved of the plan I had set out, and reminded me that I need to keep myself balanced or I was liable to break down.

That was the other conversation I had with her. I wanted to really find out how I know if I’m just avoiding everything by trying to stay busy and/or zen/zone out. I know in my heart that I’m feeling the emotions relating to my mother’s illness and the situation we are in. But I am concerned that maybe I’m not giving my emotions ENOUGH attention. How do I know? How do I know that I’m not mis-using my coping skills for avoidance purposes? She said there’s no answer that suits everyone. To try to pay attention to whether I’m avoiding things that need to be done or dealt with by using my coping skills, or if I’m still addressing things while fitting my coping skills into my life. And that if I spend more time coping/avoiding some hours/days/weeks, that I shouldn’t be too concerned.

I’m not well known for allowing myself to be emotional, so I worry about me avoiding or repressing the emotions surrounding what is happening daily. I just can’t decide what feels right and balanced. T tells me to quit worrying about it. Seriously, has she met me? 🙂

 

 

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