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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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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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Nothing is forever

I was putting wraps–ace bandage-like bandages–into the wash yet again for Mom. When she goes to the lymphedema clinic or I unwrap her at home, those wraps and all the under-bits and over-bits have to get washed. So every other day or third day I’m unrolling bandages and stuffing them into lingerie laundry bags so they don’t get tangled in the washer. So I’m stuffing the bags and thinking how often I have to do this–in small loads–because it’s costing us extra water and extra electricity and it’s not really about those things but it’s what is running through my head. And I tell myself that it’s not forever because eventually Mom will get compression garments that she can put on and off at home with velcro or they will be like bike shorts and knee-high combination compression garments. They will be used to maintain the swelling, not too reduce the swelling, so we have to get her to a point where the swelling is reduced and is at a plateau. So I tell myself that this constant washing and drying and re-rolling of bandages won’t go on forever.

And the phrase “nothing is forever” just goes through my mind over and over again. Nothing is forever.

Hub asks me if I’ve thought of what I will do when my mom is gone. Not in a mean way…we try to stay open and honest about what is happening with Mom. And at some point, all this care-giving and running and doing will stop…and I’ll be without a path again. Even worse, all the things I’ve been running and doing will stop abruptly and so how will I handle that. What will I do? I told him I didn’t want to think about it now, that when the time came I will just do something. I know I’ll have lots of things still to be done to handle Mom’s part of the estate. I know I’ll be helping my Dad take care of himself and their dog. I know I’ll have some things to do, but not like right now. Not like it’s going to be in the coming months as Mom gets sicker and sicker. But I don’t want to go that far ahead. I want to take care of what is front of me right now.

My aunt and uncle stopped by today to see Mom. My aunt pulled me aside and starting telling me of all the things I’m going to need to plan for with Mom’s passing. I wrote them down, but I told her that I wasn’t thinking ahead that far right now. That I needed to concentrate on what was right in front of me, and she reminded me that we won’t have much time to “plan” at the time she passes. I said I’d think about it and see what I could pre-plan.

I’m working so hard to stay in the moment, to do what needs to be done right now, and everyone else is asking me to look ahead. I look ahead too much and I get frozen and stuck. I get afraid.

I’m walking around trying to keep myself on a level emotional keel, but then I go home and explode. I kind of freaked out on the phone with Hub, who ended up rushing home to check on me, and all I did was cry. I got overwhelmed and I just couldn’t hold on anymore.

But I recovered, and I continued on. Which at least proves that I can.

 

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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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Shave and a haircut…

…two bits.

Mom finished her radiation treatments today. The nurses at the radiation center are beyond amazing women. I can’t tell you how phenomenal it is that these women go in to work every day and help people who are battling life-threatening diseases. How they go in every day, knowing that they’re seeing people who are so sick…who might not make it in for the next treatment. Some who can’t get out of chairs because they are so weak and frail. And yet these nurses smile and hug and encourage…and they love.

This was the second round of radiation for Mom. The first was pelvic radiation, this time it was brain radiation. When Mom came back in for this second round–the first was last summer–the nurses recognized her. They hugged her. They carried her puke bucket for her. They showed her pictures of their lives–weddings, children–and they remembered that she crocheted special hats for them. They greeted me and they greeted Dad like we were friends.

So Mom rang the bell at the radiation center for a second time. The nurses gave her a certificate–that they each signed after they wrote very sweet things–as well as a cover for her puke bucket that re-assigned as her “crochet bucket”. I took pictures of Mom ringing the bell, but it was harder to feel excitement. This was the second time she’s rung the bell for treatment completion at the radiation center. Adding in the chemo center, she’s rung a bell three times…and yet I know that the cancer is continuing to grow. There’s no question in my mind. This cancer is so aggressive, there’s not going to be any stopping it.

I smiled and cheered Mom on as she rang the bell. Afterward, we went out for lunch with Hub and my oldest brother, and my other brother and his wife surprised Mom by showing up as well. After we all stuffed our faces, I went back to my parents’ house with them to get Mom settled. We talked about cutting her hair as we drove back to the house because the radiation was causing Mom to lose her hair again (due to the location of the radiation beams). She had pulled out some clumps already and we’ve seen her shedding hair at home. It was clear she was irritated, so I offered to cut her hair really short. She usually wears her hair short-ish, but I’d say it was about 4″ long at the longest area. I started cutting and then my brother brought down his hair clippers, so I proceeded to shave her hair (with a guard) really carefully so I didn’t irritate her scalp. I left her with about half an inch of hair. Enough to keep her head from freezing, but not long enough to irritate her when it continued falling out. She thanked me and then we got her settled onto the couch so she could rest. Dad and I cleaned up the hair from the floor, then we ordered pizza and calzones and strombolis from the local pizza place. Mom wanted the food for the weekend (she had a hankering for it), in case the restaurant wouldn’t be open after the snow. I rubbed Mom’s fuzzy head, kissed her cheek, and I came home.

I never expected to have that memory with me. I’m glad I was able to help her feel more comfortable by shaving her hair, but I don’t know how to cut hair. I do a terrible job trimming the dogs–even though I do it when it’s needed so they don’t have to sit in a cage at the groomers waiting to get trimmed–so I wasn’t looking forward to cutting Mom’s hair. I did it because she needed it, but I hated doing it. I hated that it needed to be done. I hated it.

I walked home in the lightly falling snow. We’re expecting an actual “official” blizzard here (it’s going to meet real criteria for a blizzard, they’re not just saying it’s a blizzard…who knew?). 20-30″ of snow when all is said and done. It was that eerie quiet outside as I walked home. I let my mind stay blank and felt the snow touch my face, wet my hair, linger on the scarf I was wearing that my grandmother crocheted for me a million years ago. Inside my house, I took off my coat and hung it on the back of chair, then went to throw something away in the trashcan in our mudroom. The can has this latch thingy that requires you push the lid down to latch and unlatch. I pushed it to unlatch it, threw out the paper in my hand, then pushed it to latch it again. Only there was a towel on top of it (that we use to dry the dogs from the snow) that got caught under the lid. So I yanked on the towel while simultaneously trying to push the lid down to release the latch again. It didn’t work, and I swear I stood there and pounded my fist on the lid repeatedly as I yanked on the towel. BANG BANG BANG BANG. Hard. Loud enough that Hub stuck his head in the doorway to see what was going on. I finally got the lid to pop open, pulled the towel out and closed the lid again. I shrugged at Hub and said, “Guess I had some rage to get out.”

Poor guy did the right thing and scurried away without comment.

Last night when Mom texted me (she’s getting into this texting thing now that she has a stylus…she’s texting her grandkids and my non-local brother) “Alarm! Hair is falling out! Just thought you’d want to know.” she also told me she was eating some store-bought ice cream leftover from a recent visit from my nieces. So after the rage incident, I mixed up her favorite ice cream–chocolate peanut butter–and dumped it into the ice cream machine to churn. When it was done, I put it into a blue freezer container, then called Mom to say I was coming over and I was bringing the snow with me. She said, “Only if it’s chocolate covered snow.” The steroids have really cranked up her appetite for everything, including her beloved chocolate. She’s eating a lot of food now, and we make it into a joke…that no one should stand still too long in her house or they might get chewed on. So I suited up in my coat and scarf, and walked back to her house to deliver the freshly made ice cream. Again, the quietness of the snow, the gentle touch of the icy flakes, it was all so serene and so…engulfing is the only word I can come up with. I’m not sure how it really made me feel, it just was so noticeable.

I showed Mom the container of ice cream and promised that by her snack time later that evening it would be firm enough to eat, then I stuffed it into her freezer. She told me she talked to her good friend on the phone, she talked to my brother who lives in another state, and she thanked me again for cutting her hair. I told her I loved her. I told her to text me later to say good night. And I was outside for the walk home. Crunch crunch crunch. The snow was sticking the ground by now–maybe two or three inches-and I tried to duck-walk my way back home, following my footsteps only now I was leaving prints that were backward to the original. I know it sounds confusing, but at the time it seemed important to make those marks in the snow in just the right way.

When I got home, I realized how tired I was. I realized how much my body hurt. I cleaned up the stuff from the ice cream machine (it cleans easier if you do it right away) and got myself a big glass of water. I sat down and nearly couldn’t get back up when it was time for dinner.

If it really does snow as much as they say, I won’t be able to get over to Mom’s tomorrow. That’s why I ran back over tonight with the ice cream, so she had it for the weekend. If it really does snow as much as they say, I’ll have nothing to concentrate on. Mom’s doing well enough that they don’t need me over there if Dad and my brother are there (my brother lives with them). I don’t have to worry about figuring out how to get over there in 2+ feet of snow. I can stay home and do my best not to think.

Maybe I’ll be able to get outside with the dogs. I might not be able to get off the deck as my knees are really unhappy and walking through the snow in the back yard would be too painful. But maybe I’ll get some pictures. Maybe I’ll see the dogs romp. Maybe I’ll be okay.

 

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Robin Williams’s daughter posts lovely note – link

This was a lovely sentiment. I suspect her father would be incredibly proud of her.

http://mashable.com/2015/09/06/robin-williams-daughter-note-depression/

 
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Posted by on September 6, 2015 in depression, link, love, mindfulness

 

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They’re here

The nerves, they have arrived. They’re gaining ground. I’m trying really hard to avoid them, but they sit with me, and they taunt me.

I’ve been trying to stay busy, changing sheets, washing the second set so I don’t have to rely on Hub to do it at the last minute (which is when he’d wait to do it). I did all the laundry in the baskets and put it all away. I made fresh lemonade for my recovery. I made split pea soup in the crockpot in the hopes that it would help me keep from getting constipated (soooooo much fiber) after surgery. I cooked portabello mushrooms and made my ricotta cheese mixture to eat on top of the mushrooms for after surgery. I have sliced turkey for easy extra protein. I have laid in food and snack supplies, drinks, been to the library for two dozen books, been the craft store for five skeins of yarn. I have my bag basically packed, my advanced directive packed, my list for the anesthesiologist. I have gluten free snacks for the hospital. I have my stomach pillow for the car ride home. I have the pillows prepped for my bed to help support me if I want to sit there after surgery. The recliner is also ready for me. My parents are going to take our dogs, so we have to pack food and treats for them…tomorrow.

Hub will be home with me Thursday and Friday, as well as the weekend and the holiday on Monday. He usually works from home on Tuesdays and Wednesdays, so if I need him around, he can be home those days next week, too. So I’ll have his help if I need it.

I’m as prepared as I can be. And I’m nervous as hell. I don’t feel panicky (though I had a few moments of it earlier today, which I shooed away by continuing to DO STUFF), but I do feel nervous. I feel like I’m “faking it til I make it” kind of thing. Like I’m just lying to myself about how I’m feeling. Am I masking anxiety? I don’t know. Does it matter if I’m faking it? I don’t know.

My aunt called to wish me luck tonight. It was a weird conversation. My primary care doctor wished me luck. My gyno wished me luck. I’m appreciative that people are thinking of me, but I’m not really DOING anything. I want to tell people to call the surgeon and wish HIM luck. Tell him how they want him to take care of me and do a good job and make sure the surgery goes well. He’s the one doing the work, yah? But I get it, and I’m thankful for people who care about me.

I keep thinking “this time next week it’ll be all over.” Tomorrow is bowel prep day. And it’s the day they’re going to call to tell me what time the surgery is scheduled for. I’m going to Mom’s radiation appointment with her (to sit in on the doctor’s appointment), then I get home and almost immediately start with the bowel prep. I’m going to have to have the house phone forwarded to my cell # so I don’t miss the scheduling call, if they haven’t called by the time I leave the house. All this is making it more real, and making me more nervous.

In case I don’t post tomorrow, thanks to everyone for being a part of my journey. The more we share about our worlds, the more we learn how alike we are, and the more we find we’re not so alone.

 

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