I haven't written much this past year, a huge 12 posts in all of 2014. It was the kind of year I never expected to happen, really, I never expected to get the privilege of having time to stop, to honestly look at things, to heal.
I wrote in December 2013 that things had blown up spectacularly with my Mother. It still isn't something I want to talk about as publicly as my blog, but if you're someone who knows how to contact me directly, drop me a line or give me a call, invite me out for tea or lunch if you're in Portland, and I'll give you the high level of all my Mother put us through.
Back in April of 2012, when all the chaos of trying to get my Mother's financial assets returned to her by her husband, someone left this comment on my blog. Understandably, I choose not to publish it (exactly why I have a posted comment policy).
Take your mother home
Submitted on 2012/04/13 at 10:22 pm
It’s your duty to invite your mother to live with you in your home. Take care of her until
The day that she dies. Anything less from YOU is a disgrace.
Umm... yeah, I've been carrying that one around for a while. It has made me felt crushed by guilt. Ironically, when this compassion-impaired, ignorant, judging person posted this unpublished comment we were already discussing what would have to change in order to have my Mother move in with us.
We bought another house. I became a landlord and rented out the house I'd purchased. We moved all our stuff. A month later we moved my Mother and most of her stuff into the new house. A week later we had a house full of emergency responders in our chaotic house because my Mother took her lunchtime insulin and fell asleep, so her blood sugars dropped so low as to require a trip in an ambulance. So began our daily oversight of her medications, insulin, blood sugars, meals, etc.
The amazing thing was is that it actually helped. Her care providers were truly seeing improvement in her health overall, things that had worried them for years. The constant message from them was to keep doing what we were doing. The diet changes, the help with medication, the fall prevention (in part due to stopping her over medicating herself), and the regular oversight was really shifting her health dramatically in a positive way.
Except we were to find out she didn't want it. She really didn't want that improvement and even rejected me personally in one of our last conversations in October 2013.
Yes, all this while working in a position at a large high tech company that constantly demanded more and more of my time, and where I'd eventually experience sexual harassment from my boss.
The combination of all of those things just shut me right down last year. "Dangerously Exhausted" was a phrased used by both my new physician and new mental health nurse practitioner. Total emotional and physical exhaustion, nearly the the point of hospitalization. In the end, seriously harming my health as well as the health of my marriage, was all I got out of throwing myself fully into trying to care for my Mother while working to the point of tears over a project that just couldn't succeed.
In late November 2014 I commented to my therapist that it had been a while; that I was expecting to hear from my Mother any day now.
Yes, despite my letter asking her to direct all communication thorough CK, she has sent some cards and letters, which mostly focused on asking for things we've already tried to send. Less than a week later a social worker called CK and told her that my Mother had chosen to go to hospice care, with no further treatment of the thyroid cancer or anything else. CK then called to share the news with me.
So now there is the weight of waiting. Tom Petty said it best, "The Waiting" is the hardest part. This is the state I've been in since early December. Back when she had a "month" to live, possibly more if she responded to the palliative treatment.
Only he was singing about love and passionate encounters. However, the same adage applies to this limbo state I've been in since early December. Waiting for the call, the news that she's finally passed over.
Waiting for the news I've prepared my whole life for. It finally feels like I'm ready for that news and now I wait.
I sent her a letter that arrived early this week. It reassured her that I'm doing fine, that I know she (believes) she loves and cares for me, and that I hope she was finally moving toward peace at long last. Now I just feel the weight of waiting for that final phone call, waiting for the news that she is gone.
tap. tap. tap. Hey, is this thing on?
I feel that at least a short summary on all the things that have been going on is long over due.
By October of last year work became intolerable to the point of triggering my PTSD and my Mother flat out told me that she didn't want to work with me/us to live together or even have a relationship with me. In early November 2013, as I was trying to put on Ignite Portland, Mother pulled the granddaddy of all tantrums in order to get her own way and strike out in one massively hostile, abusive, dangerous action. And I? Well, I just had to stop and was encouraged by HR to go on short-term disability.
I was granted the benefits for two months, but instead of personal recovery I had a couple of frantic months where I was still dealing with Mom's stuff and hostile behavior. I also frantically looked for another job. Then day came where I was supposed to go back to work and I really just kind of halted, the human equivalent of a core dump. My health care providers told me to stop all of it and sleep, take walks with the dog, make art, read and take lots of hot baths. There's new medications too, which have helped me to start sleeping again and keep my PTSD at a more manageable level. I have also officially left my position at my old company.
So I run errands during the weekdays and have been working on organizing more things around the house. Spending a couple of years constantly dealing with my Mother's stuff has had me taking quite a few trips to Goodwill to get rid of things I realize I no longer use, read, wear, etc. A friend of mine and I created two new flower beds in our yard last month, one in the back and the other right outside the front door. I love that whenever arriving home or leaving, the first thing we see now are flowers.
My health care providers remind me that I am doing the necessary work of healing after years of exhausting work from being on-call for so many years and the even harder work of healing the wounds from the abusive relationship with my Mother. Lately there's been more good days than bad, which helps me feel like there's "progress".
Still, there are days were I find it hard to get myself to leave the house. Seeing old co-workers causes panic attacks. News or contact by my Mother causes a week of nightmares and days-long anxiety. Finding yet another box of her hoarded, expired medication exhausts me. I'm told that the level of breakdown and extreme exhaustion I was at in December was pretty severe and recovery may take a long while. I have been strongly encouraged to "retire" early from high tech positions and instead teach yoga and start selling my artwork.
If I were to be hoping to return to tech, my doctor has said that she would consider releasing me to that kind of work until January at the earliest. However, my care providers have enthusiastically released me to start teaching occasional yoga classes. I'm going to be trying to get on the substitute teacher list at some of the community centers, athletic clubs, and yoga centers.
I also am now legally married to CK, which is amazing and wonderful. In early June Oregon's ban on same-sex marriage was overturned and we got our license within hours of the legal ruling. On June 14th we were legally wed in our backyard with a few close friends, CK's Mom & Step-dad, and sister were in attendance.
I've been adding a few new recipes to Vegan Nosh. I love that my food photography has improved so much from the class CK and I took together last year. I've found a linoleum block carving class the day before my birthday and have broadly hinted to CK that I'd love us to go together.
This weekend I will be attempting to spend some time at the World Domination Summit. Ticket was bought a year ago, when spending a crowded weekend with a few thousand people sounded fun. Giving myself permission to just go for the things I want to go to.
Since Mom's abrupt departure this past November we've been slowly making the house feel more like our space. We've made the guest room more welcoming and moved in the dressers CK's Mom and step-father brought up for us. What was Mom's bedroom has become our practice room; a space for meditation and yoga.
Several years ago, when Mom was moving out of the home she and my Dad shared I took home the remaining of her Seven Dwarves, a little gnome, and leprechaun. Mom didn't want them, given that she was downsizing to an urban apartment she didn't have the space, and the dwarves themselves reminded her of her mother. We'd put them and a few other things at the front of the door, hoping that the familiar might help Mom in the transition to living with us.
My grandmother had made each daughter a set of the Seven Dwarves. She had got around to making a Snow White for her oldest daughter, her favorite, but never managed to get around to making one for my Mom.
As we've reclaimed the space there's been a lot of discussion about the disposition of these yard ornaments. They really weren't in good enough condition to donate, one even being broken at the back, and having them around just reminded me of the dreams for Mom I've had to let go of.
I took all the ideas and decided to put them all into play in different ways. Those ornaments that weren't already breaking I would "release into the world". Today our friend MC and I took Dora for a walk and placed the 2 unbroken dwarves and the gnome out along a trail in a small park not far from the house. It felt good to place these, I hope that these bring a smile to people walking in the park, a bit of whimsy to brighten their day.
Today is my Mom's 71st birthday. I've not sent her a card and will not be calling her later, in fact I don't even have whatever number she now has.
I feel like a terrible daughter, but I'm working on that because I know that having set this boundary with my Mother is the best choice for the sake of my health and they health of my marriage. I wisely scheduled a visit from friends for lunch and therapy this afternoon.
A year ago we were trying to make a celebration in Hawaii for Mom's 70th birthday, an age I never expected her to see. Even though we'd made all the arrangements and took special care, I was left feeling like Mom found her birthday a let down. On her birthday itself we went out to a restaurant where we could all get tasty food and she could have the fish she had said she was craving. She'd have rather gone to a different restaurant, but knew it would leave CK and I with no real choice for something we could eat. Later she'd make a point to tell me how the fish at a restaurant we like wasn't good, in fact she'd tell me at least a couple more times while in Hawaii that her birthday dinner wasn't very good. The travel back home was miserable.
I feels like things started to deteriorate rather quickly after that trip. Mom's increasing dissatisfaction in living with us; snide comments escalating to sharp words. Again overhearing her telling friends how it wasn't what it seemed here, that we didn't really take good care of her or make anything nice for her to eat or special dishes. Worse, her intimating to people that she felt I was misusing my access to her bank account. Attempts to take her out for lunch on weekends were spent in near silence, her eating but not really interested in engaging with us at all.
When Mom came to live with us I still had this desperate hope that I could really help. I had an even more tightly held hope that my Mom wasn't as bad as I thought, that some of my tense, defensive behavior toward her wasn't warranted. Seeing Mom through the lens of CK's view, free of my history, would let me heal some of that distrust that came up for me.
Only that turned out not to be the case, not entirely and not how I hoped. True, we managed to tremendously improve Mom's health. She was in better health than she'd been in for a few years. She was in much better health for making the transition to an assisted living facility. One of the things that hurts is finding out that Mom didn't really want her health improved, she didn't want to let go of her personal mythology that her health was an insurmountable obstacle and she a helpless victim of her bad health. She resented that careful blood glucose monitoring and insulin adjustments, along with a healthier, vegan diet improved her health noticeably.
The rest of it, the harder part, is how quickly CK saw the narcissistic, petty, ill person I'd been raised by. Not only was my feeling the need to defend myself warranted, it needed to be bolstered by setting the kind of boundary I've now set. As painful as this has all been, devastatingly so, I know I wouldn't have been able to see my Mom and my childhood quite so clearly if we hadn't moved Mom in with us. I was correct that in changing my view by seeing her as CK sees her would teach me a lot, the sad part is that it wasn't what I was hoping for. It wasn't that changing my stiff interactions with her would improve anything, not in the long run, since my Mom has never really wanted a relationship with me. The only relationship that is possible with her is the one where I'm not me, I'm her "miracle daughter" who takes care of her every selfish need. The mirror of the person she wanted to be.
That explains it so well, that she expected me to mirror back to her the girl she had wanted to be. Between trying to force me into becoming the person she wished she'd been, and either subverting and punishing me for asserting my own identity, it makes sense. When called on this behavior she attacked us.
I wisely scheduled a visit with one of my therapists today. She asked me what it was I was losing by sticking with my boundary-setting not contacting her. I thought about it a lot, I mean I'm clearly "losing" many things that do not further my life or my health. What is it that I feel loss for, what do I grieve, that's what I thought about. I finally replied that I was losing the fairy tale; a mother who cherished, supported, and believed in me. A mother who cheered me on as I made my way and who would always have my back. The kind of mother I see so many friends write about having. I have to set that particular hope aside so that I can move forward with healing and becoming the person I want to be.
I can still hold her in my heart, sending thoughts of loving-kindness her way along with my earnest wishes for her to experience peace and happiness, or even just contentment. I can feel great compassion for her inability to move towards health, but I cannot see her. Having compassion for her does not mean I set aside my own health or sacrifice my relationship with CK.
I'm not yet ready to write about the past few months. The high level summary is that Mom has not returned and is living at an assisted living facility not terribly far from here. On the advice of multiple healthcare providers, and even more importantly, my wife, I have asked my Mother not to contact me further. Thus far, she has respected my request.
I was asked today by one of those care providers if making this request and having Mom respect it made me feel happy. It doesn't, it doesn't at all, it makes me feel a great deal of sorrow. I fully accept that my Mom's view of reality cannot be challenged, ever. When that happens she either reacts to destroy or flee, or both really. I've stopped responding in the way I was trained to as a child and now threaten that view of reality. For the sake of my health and the health of my marriage, I am moving on with my life.
It is really hard. The holidays, particularly as compared with all the hope I'd been filled with last year, were painful. I'm still at the stage were animated movies with a princess in it can be triggering.
What I have been allowing myself to be fine with enjoying is the feeling of rest. Not having to time my entire life around blood glucose checks and insulin adjustments for a person who was hostile to both CK and I. My relief & gratitude and my grief can be part of me concurrently, within the same space.
Since then? I've been making art again. It had quite honestly been over a year since I'd really created anything, aside from what I'd made in a workshop last May. While I still need to get back to that large project, I've made a handful of new things. I am continuing to enjoy connecting with other artists, mostly all women, once a month.
At the meet-up at the start of this month, we had all brought supplies to share at a common table. Kind of the collage artist equivalent of a party where everyone brings clothes they're no longer wearing and you pick through all the other clothes, taking home something awesome to you. I'd brought a bunch of traditional scrapbooking paper, since I've been really moving toward using mostly things I've created, and stickers. Upon overhearing how I love finding ways to use real stamps in my work, several other women started looking through the pile on the table to help find all of the stamps (quite a bundle) that someone else had put there. Likewise for to giant puzzle pieces, from another women who'd noticed the smaller, altered puzzle piece I'd brought to share. I left with my heart full at how giving, including, and supportive this group is and how grateful I am that I've made space fr it.
I've been continuing to practice my photography. Last week I was fortunate enough to get a few days in Yachats with Dora while CK was away on a business trip. A good friend joined me for 2 of the 3 nights I stayed. It was the perfect time to practice what I'd learned in November.
CK and I have been working on projects around the house and are having some more art professionally framed. It feels like bit by bit we're reclaiming the energy of the house. I've been napping a lot, which I've been advised to find time to continue to do. The same group of care providers have noted that I've been dangerously exhausted. Physically, emotionally, mentally, and spiritually exhausted and it may take more than a few weeks to recover.
While I don't feel it is possible to be happy about making the decision to separate my life from my Mom, I do feel some wonder and enjoyment at starting to feel like it will be a year of changes to improve my life.
CK pointed me to Henry Miller's 11 Commandments of Writing & Daily Creative Routine. I am particularly taken with his third commandment:
"Don’t be nervous. Work calmly, joyously, recklessly on whatever is in hand."
Not bad advice as a new year begins.
Everything kind of blew up in November with Mom in a spectacular fashion.
The summary: as of November 6th Mom hasn't been at our home and has transitioned to an assisted living facility. She's fine, physically. The full flood of the drama in November is lessening, leaving the shock waves of her actions. It isn't something I really want to write about here, but if you know me you can reach out via email, phone, or ask if I'm up for tea if you're in Portland.
Actually, there's an awful lot going on with a lot of things that I"m not going write about here.
Instead I'm going to write about the photography class CK and I took together. We've been wanting to find something to do together. Given how unrelentingly stressful the past couple of years have been we've needed something to connect over that wasn't Mom or community events.
CK found the class at Newspace Center for Photography and had picked the one being taught by Zeb Andrews. It met for 5 Tuesday evenings and included a Saturday "field trip" photography walk. As a class we decided on a walk in downtown Portland, starting down by the Steel Bridge.
It has been really great sharing this experience with CK and I've learned so much about my camera! Aside from the auto-focus, I've been setting the shutter speed, aperture, and ISO manually; learning to use the meter.
I've also been experimenting a lot more with black & white pictures, light balance, setting focus priority. CK and I've taken a few walks together too, taking cameras along and experimenting. Looking at things in a new way. I've posted my favorites of the photo experiments I've taken.
We had 9 friends, family-of-choice, over for a big Thanksgiving feast. It was lovely to have everyone here. Given how exhausting November had been, and that the Mama-Drama-Rama really had just barely wrapped mostly up in time to do the shopping, it was a tiring day.
I've also finally started making some artwork again. I'm still making it to the first Saturday meet-ups of the Collage Artists' Guild. The December meeting was a "blind bag" gift exchange. You were to have made something, bring it in a plain, brown paper bag, all bags numbered and numbers drawn. My gift turned out to be a stenciled wooden box.
I made a Metta Shrine out of a small stationery box and did mixed-media collage on it using a page from a book, acrylic paints, tissue papers, metallic pigment inks, and all kinds of paper. CK then helped me fold several paper cranes that I put into the box before wrapping and bagging it up.
Given that it was the first piece of art I've finished since... well, in way too many months, I was so pleased at how excited the recipient was; she particularly loved the vivid colors. Another member of the group commented on what a meaningful piece it was. I'm working on a small ATC right now.
*Click on picture to see set of more photos of the shrine.
It has been a tough year. Really, for newlyweds, we've had a ridiculously tough start to things. I'm profoundly grateful that CK is in my life, encouraging and reminding me that it is safe to trust and love her.
Last Thursday Mom told me she didn't want to try to change or address her emotions. It hurts a lot. I'm trying to not let it feel like a personal rejection, but it is hard. When it counted all of my parents, Father, Step-dad, and now Mom, have always chose to not fight, to not do the work needed to stay in the world. I'm trying to remember that the depth of Mom's mental illness makes trying seem like a task not worth doing and it isn't that she doesn't care enough about me to try.
Saturday was filled with the wonderful gift of a cooking lesson from a woman who has gone from "vendor" to "friend" in the years we've worked together to provide a tasty lunch at Open Source Bridge. She met me, and a few friends, for "coached shopping" at a new Asian supermarket. Then on to freshly made tofu. Back to our home for a flurry of cooking. It wore me out, but it was good to have that energy in the house.
Yesterday I woke up feeling like I needed a do-over. I had slept alright and got up early enough to have a soak after feeding our companion animals. I then got Mom up and got her started on her day, but was finding my morning tea was leaving me feeling a nauseous. I decided the answer was to just go back to bed for a while.
I did. I slept another 90 minutes or so and felt better for it. Then I went online and discovered the news that Lou Reed had died.
I nearly just gave up and went back to bed, but the necessity of errands drove me forth. The misty, gray day suited my lousy mood. I bemoaned my iPod, which had died recently taking my library with it. Much of it is backed up, but getting our music server going is a project we need to take on together soon. I couldn't immediately gratify my desire to put on Lou Reed's music, loud. I was angry at yet another loss, regardless of the inevitability of loss that is part of living.
I decided the day, with all the tiredness and sadness brought on by Mom's declaration, combined with a moody-funk brought on by the news about Lou Reed, needed flowers. I set out with the intention of glaring down the errands, buying my damn flowers, and defying the misty grey weather by potting them on the front porch.
Then the sun came out. I got home, bought a copy of "Magic and Loss", transferred it to the shiny new iPod CK bought for me while she was flying off on another business trip, and set to planting my flowers. I ended by sweeping down the bricks. In my bones when I sweep down a walk in chilly weather I am drawn back to sesshin. The music ended. I softly chanted some of the Diamond Sutra. I went back inside feeling more grounded.
Today I saw my acupuncturist. I shared with him that I have been feeling foolish for getting my hopes up around Mom. I so deeply hoped that our alleviating the burden of her health management, of stabilizing her health, would create a space for her to want to have a relationship with me based around something other than appointments or shopping. The reality that she doesn't want that and no amount of my hoping and wanting it for us makes any difference is tough.
My very wise practitioner quickly responded, "Oh don't do that. Never feel foolish for hoping. It is wonderful to have hope."
I blinked in surprise at this swift re-framing of my feeling dumb for getting my hopes up. He then added, "You tested the bounds of that hope for your Mom. You've done what you could. It is alright to have had hope then found it wasn't a possible path. It is time to move on."
It still hurts, a lot. I'm trying to reset to new hopes for Mom. That she'll be safe and secure. That she'll find new friends who have more in common with her. I am not going to push it and hope for contentment or ease for her, I feel these will elude her entirely. She will always stumble on joy.
I was introduced to the song, "What's Good", by the late Lou Reed when it appeared on the soundtrack for one of my favorite movies, Until the End of the World. It is actually from "Magic and Loss". I have always been really struck by the lyrics toward the end that remind us that "Life's good (but not fair at all)".
If things were "fair" then Mom would want a relationship with me as much as I want one with her, she'd respond to all the work I put in to try and make that happen. Sunday ended up being sunny and beautiful. The flowers I planted graced our home. Life is good, even when it feels distinctly unfair.
by Lou Reed
Life's like a mayonnaise soda
And life's like space without room
And life's like bacon and ice cream
That's what life's like without you
Life's like forever becoming
But life's forever dealing in hurt
Now life's like death without living
That's what life's like without you
Life's like Sanskrit read to a pony
I see you in my mind's eye strangling on your tongue
What's good is knowing such devotion
I've been around, I know what makes things run
What good is seeing eye chocolate
What good's a computerized nose
And what good was cancer in April
Why no good, no good at all
What good's a war without killing
What good is rain that falls up
What good's a disease that won't hurt you
Why no good, I guess, no good at all
What good are these thoughts that I'm thinking
It must be better not to be thinking at all
A Styrofoam lover with emotions of concrete
No not much, not much at all
What good is life without living
What good's this lion that barks
You loved a life others throw away nightly
It's not fair, not fair at all
Oh, baby, what's good?
Not much at all
Hey, baby, what's good?
Not much at all
But not fair at all
**Trigger Warning: Lots and lots of Mom Stuff, Abusive behavior, references to childhood abuse and dealing with addiction issues**
It has been a year since we moved into our new home, 11 months since Mom moved in with us. It has been quite a year.
Honestly, I have found it hard to write about anything. This year has been facing the reality that I am unable to affect my Mom's happiness, no matter how hard I try.
It has also taken away my last hopes that maybe my childhood wasn't awful. That it only had moments of lousiness. That my Mom was pretty good the majority of the time.
Those last hopes are pretty much gone having seen how quickly CK has seen Mom's manipulative tendencies. How swiftly she's become horrified by and angry at Mom's behavior. It is deeply painful to really acknowledge the truth of one of my therapists observing that she felt my entire childhood was devoid of any adult who had my best interests at heart.
All I've wanted for Mom is to see her content, happy even if just in small ways. I gave up on seeing Mom have a life that's fulfilling a long time ago after realizing that I don't think I could recognize what that means to Mom. I also recognized a long time ago that what I find fulfilling, my Mother finds either amusing or baffling, which also hurts.
We hoped that by bringing Mom to live with us we could help relieve some of things she was clearly overwhelmed by. Living alone she fell several times, kept getting sick, and was clearly not coping with anything. I was going out to Gresham all the time, sometimes in a panicked rush. We knew that with some oversight with medication and meals, and some company, that she would stabilize. I'd hoped that with stability we might have the space to enjoy some of our time together.
The first weekend after she moved in we had a low blood sugar incident because Mom had taken insulin and didn't follow up with food. We were out running errands and not here to supervise. When we arrived home Mom was barely responsive, clammy, and incoherent.
By "incident" I mean a fire truck out front, 6 or 7 very large, male EMTs in our cramped living room that had just been filled with Mom's stuff, and an ambulance ride. It was the second time in my life I've been asked to "ride shotgun" in an ambulance with someone I know being stabilized in the back. I gave directions to the hospital, the ER doc went over her list of medications in shock. After returning home from the hospital we also took over Mom's medications, particularly things like Oxycodone and Ativan, which we caught her about to incorrectly dose herself.
It hit us really hard that the terrifying mix of Ambien, Ativan, Oxycode, and Fentanyl patches she was on left her in kind of a vague haze all the time. If you add to the the insulin, forgetting to eat, and not eating well we knew it was really no wonder she hadn't fallen more. A combination of over-medicating herself and low blood sugars could have very easily been lethal.
Since this incident all her diabetes medications and insulin levels have been adjusted and we most often check into be sure she's eaten after insulin. CK spent several months having weekly calls with a diabetes nurse specialist at Kaiser to track Mom's blood glucose, get Mom off the Metformin, figure out what the new R and N insulin doses should be, and what the best scale for corrective R insulin needs to be. We make sure Mom checks her blood glucose 4 times a day, correcting the insulin dose 2-3 times each day.
Every other week for the past year and a half or so I set up her meds for the next two weeks. We've also realized that she still doesn't do well getting them out of the containers, often leaving pills behind, and occasionally taking the pills incorrectly (wrong days, wrong time to take them, etc.). Since last autumn every morning we set out a day's pills in small ceramic ramekins, each resting on a colored sticky note to indicate which time it is to be taken.
I now also dispense her Fentanyl patches, which she also hadn't been taking correctly. I've got her to stop taking Ativan too and work with her in stressful situations to try and focus on her breath, reminding her that she's alright. Besides which, her last physician had prescribed it only because of the traumatic way her late husband's family dumped her at the independent living facility in January 2012. Mom isn't having panic attacks anymore, so it doesn't make sense for her to keep taking Ativan on a daily basis. At times she was taking one a few times a day in combination with Oxycodone 1-2 at a time, "as needed". Yes, that is on top of 100mg Fentanyl patches and her taking Ambien at bedtime.
We've stopped the Ambien too, particularly since she already is taking an Oxycodone at bedtime too. When she was taking those Ambien and Oxycodone at bedtime she would become alarmingly out-of-it. No surprise.
Then there's the kidney disease. After years of diabetes, and not really doing a good job managing it, with the related medications like Metformin has left Mom's kidneys is sorry shape. The result is a constant struggle with anemia since her kidneys fail to adequately do their part of the job of red blood cell production. This means bi-weekly blood work to see how her blood levels are. When they're falling, there is the scheduling for a type & cross-match followed by a transfusion, sometimes needed monthly. She had an access port installed several years ago, but to ensure that it always properly working in case a transfusion is needed we also have to have bi-weekly port flushes scheduled. Since we've engaged the help of the care management folks at least the work of taking Mom to a Kaiser facility weekly is offloaded from us, but still we're always reviewing the lab results. We also weekly dispense a dose of Procrit which stimulates the kidneys into working and have regular calls with the nephrology pharmacy as the dosage needs to change to try and keep ahead of the anemia.
It hasn't been easy getting Mom's health to stabilize, but we've done it. There have been no more serious falls and no more low blood sugar incidents. On top of that the change to a vegan diet* and stabilization of her blood glucose levels has meant that her eyes** are actually improving, her near constant digestive distress has been resolved, and her triglycerides have lowered to the point they can actually be measured.***
*Mostly vegan, we encourage her to eat as she likes outside the home.
**Mom is legally blind due to complications of the diabetes. Her eyes have had a lot of swelling in them, necessitating treatments directly too them. Her eye doctor was actually quite pleasantly surprised at our last visit and felt that the diet change and blood sugar stabilization is clearly helping. He told Mom that she should keep doing what she's been doing!
***Yes, Mom's triglycerides have been so high they've been out of measurable range.
We've worked with a new physician on what her dose of Oxycodone is, but Mom often complains about wanting to go back to when she was self-dosing with these. The amount we can get from the pharmacy is very strictly controlled and we're not allowed to pick them up early. On more than one occasion we've come up short of the date, which leaves me suspecting that she can actually get into them on the high shelf I've put them. In fact, I've moved them this week because I really think some of those prescriptions have been "short" because she's got into them.
There's been some good, but mostly it has just been a damn long couple of years we're coming up on. That said, it has been a particularly lousy week.
Sunday, when CK and I were going to leave to go take care of the week's grocery shopping Mom somewhat snidely remarked that she hoped we had fun without her.
Mom's been resentful for a while that grocery shopping isn't set aside as a fun outing for her to poke around the store. Getting the grocery shopping is largely a chore I like to get done with as efficiently as possible and I realized early on that shopping with her took at least twice as long. I also had to stop her from nearly running into people with the shopping cart she insists on using. Grocery shopping with Mom makes a tolerable chore an anxiety inducing activity.
On Monday I had to admit I was fighting a cold. Watching CK play Skyrim after dinner started making horribly dizzy so I went to lay down. While I was doing so I could overhear Mom, through her closed door, on the phone with a friend complaining about us, particularly about how "of course" we didn't take her with us shopping along with other bitterness.
This is not the first time one of us has overheard Mom bitching about us on the phone. CK even confronted Mom once after overhearing her telling a friend that I was misusing her funds. What shocked CK most about this is my lack of surprise that Mom should get caught saying awful things about me to people behind my back. She's done it many times in my life, at various ages.
On Tuesday Mom's blood glucose at dinner was unexpectedly high, particularly since she'd had lunch earlier than usual that day. It was high enough that I'd asked her what she had for lunch and asked if she'd had a snack in the afternoon. A snack would have been fine, I just wanted the 220 blood glucose to make some sense. I had her retest, assuming she had something on her hands, but it was still at 200. I just shook my head over it and gave her a higher dose of the R insulin to take before dinner. We've suspected Mom's been snacking in her room because she's been overheard munching at times and we've also caught Dora licking up crumbs off the floor. We've asked her about it, but she always denies it. sometimes really defensively.
On Thursday morning CK realized that our recycling and compost cans didn't make it down to the curb and rush out in the morning to do so. She discovered Mom had accidentally dumped the small trash can from her bedroom into the recycling. This has happened a couple of times. We've labeled the cans with big reflective letter stickers, we've suggested she not take it out when it is dim outside (which makes it even harder for her to see which can is which), and we've even noted that her trash is emptied every other week by the person who comes and cleans the house for us. Still, it is one of those things where she still wants to feel like she can do something herself, so sometimes we end up with trash in the compost and recycling, leaving whoever finds it the messy job of getting the trash out of the wrong bin and into the right one.
That's not the bad part. Yes, it is frustrating and irritating, but if that's the only irritation we dealt with it would be entirely manageable.
In the trash CK discovered several Twinkie wrappers and a receipt from buying some herbal weight loss pills while out shopping with friends when we visited Toronto for our anniversary. Take away that Twinkies aren't vegan. Take away that she's self medicating with weight loss pills that, combined with all the medications for her diabetes, high blood pressure, and congestive heart failure, not to mention her pacemaker, are really a dangerous combination. Not to mention just being a bad idea to take them with Mom's combination of health challenges. Take all that away and we're left with her sneaking things that are not good for her and lying about it.
CK confronted her while I finished getting dressed. I had to take several deep breaths to go out into the kitchen where I could hear Mom implying that her hiding things was our fault. That she is forced to lie and sneak because we so rigid, don't let her have anything she wants, and "treat her like a child". I confronted her about the high blood glucose on Tuesday evening, noting that Twinkies explained it now. I told her I wouldn't have cared if she'd had a sugary treat, even if it isn't the right kind of choice for herself. I had just wanted to understand because unexplained highs or lows in the blood sugar can be indicative of something going on that should be seen to by her doctor.
Since Thursday morning Mom's barely spoken to us****. She is polite, but doesn't really engage and retreats to her room. I haven't given in to the old training that compels me to make it better for her, comfort her. CK is also not really talking to her at all after telling Mom she needed to really honestly talk to us. Right before Mom told CK that she's not a psychologist and she can't make Mom say anything.
This past spring we had an assessment of Mom done by a company in town that provides care coordination and management for seniors and other vulnerable people. They advised that Mom shouldn't be living with us, that the level of oversight and assistance she needs would require us bringing in a lot of extra help in the home. I've also been questioned pretty repeatedly by both of my therapists this past year about what I get out of having Mom live here, aside from the reassurance that direct oversight of her provides.
Mom's not happy here. My therapists believe Mom really isn't capable of happiness, that she connects with others only through misery. Lately I think the main things she gets out of being here is an increase in her monthly income, because she's not spending as much for her "rent", and access to a hot tub. I've felt for several years that while Mom says she loves me, she doesn't like me. She doesn't respect me, doesn't understand me, and feels entitled to demand respect from me.
Mom has this idea that merely attaining a certain age entitles someone to be respected regardless of how they behave. Growing up I was repeatedly told that age demanded respect, regardless of truth or what was ethically right. Mom also raised me to respond to her unhappiness, to do anything to make her happy and to make things easier for her.
Add to a huge, lifelong list of behavior and mental health issues the fact that the clear toll of the past couple of traumatic years is a decline in cognitive ability. Add to that the reality that Mom can go from generally OK to totally decompensated very quickly. This progression is so rapid that it is not advisable for her to take public transportation, not even the ride share for seniors. She does take a shuttle to the senior center, but those drivers have more experience dealing with folks like Mom.
The assessment folks were right. CK and I are so overwhelmed with the effort to care for her that that effort combined with our respective, demanding jobs, means we often have little energy left to connect with one another. It has become increasingly clear that Mom does not, cannot appreciate the tremendous effort it takes to keep her health stable. In fact, I often am left feeling like she resents our efforts to keep her health stabilized because she doesn't want to think about what she eats, she doesn't want to keep a consistent schedule around eating, she wants to take all the pills that let her put this world she hates and the pain she fears behind a haze of fog.
The reality is that Mom will be unhappy, petty, and spiteful no matter where she lives. She will continue to decline mentally, further removing any hope that she can honestly engage with us about the hurtful ways she behaves. Not that she ever really has taken responsibility for her behavior.
On Tuesday afternoon we met with a woman who specializes in placing people in care facilities. She was recommended to us by the people who did the care assessment. Her belief, given Mom's cognitive state and mental health issues, is that Mom needs a residential care facility. She is encouraging us, me particularly, to understand that it is OK to pursue this decision about Mom's long term care, that it isn't reasonable for us to sacrifice our life together just so Mom can be terrible to us, me particularly. No sacrifice on our part can actually bring Mom happiness in any way, but will only further harm us.
****As of 11pm we've had a huge blow up, but I suppose at least it isn't festering just below the surface any longer.
I turned 44 yesterday. Which makes today the first day of my 45th year.
It rather boggles the mind. Well, at least my mind.
It has been a really tough year, and then some. All the upheavals with Mom, buying a house with CK (wonderful, but wow was it stressful), moving Mom in with us. All that and continuing to work on events in the Portland tech community and try and keep on top what has becoming an increasingly demanding job. Honestly, I'm starting this new year off feeling depleted in many ways.
Work is hard. It isn't that it was easy to begin with, but the demands have more than doubled and find I find myself having to give up or being taken off of things that would be both hard and rewarding because I need to expend ever more energy on a primary application upgrade project. Trust me, this isn't like upgrading the OS. It is a project involving over 2300 users, mostly hostile. The vendor's support has been appalling. I've found bugs, requirements gaps, and what can only be called seriously bad decisions for over a year solid. I'm worn out of having to fight my way though the next problem that shows up just as we're supposed to "turn the corner" on the horribleness.
All that and this year it hit me that, aside from stressful periods of unemployment, I've been in "on call" mode since 1998. The stress of that alone is affecting my health. I also feel like what I've been doing at work, while building my reputation in one area, really distracts from the career change I had wanted to make 3 years ago. I've let my boss know this, and we've brainstormed some ideas, but the part I don't feel confident about is the allocation of another headcount for our team so that I can move into a very strategic role instead of a hands-on, "tactical" role. Enterprise Reporting Architect is the title we've been kicking around.
Living with Mom is hard. Not a surprise, but yet still surprising in the ways it is hard. Gaining insight into the benefit of it, despite the fact that it has me living with someone who can be constantly triggering to me, is something I find myself being asked to revisit with my therapists. I still feel like there is benefit. I also feel I'm not fully ready to give up on the hope that maybe she can experience a little happiness and contentment in her life, and that I might get to enjoy seeing that.
This might explain the down-turn in posts. It has been kind of unrelenting.
There there is loss. In the past handful of years 5 people we've cared about have taken their lives. I still have a lot of sorrow at Jen's death and a lingering, aching awkwardness over seeing folks from college at her memorial. Some days it feels like I remain frozen at the edge of real grief. It is just so big, and when you combine it with the layers of grief for my Mom, my childhood, all of it... well, it feels overwhelming.
So that's the hard. Starting this year I also bring so many positives.
Despite a continuing struggle with chronic pain, including lingering neck pain from the car accident in June 2012, I am in good health. At 44 I am in better health than a few generations of women in my family before me have enjoyed. While not as active as I wish, I still am able to go for hikes, swim, and do yoga (even if the neck injury has limited me).
I have a good job, despite the fact it is really exhausting me it affords me a lot of benefits and privileges. I recognize this year that my position and work needs to change in this coming year, even if it means the anxious prospect of moving on to a new company. It has afforded me a lot of growth and I've been able to make time to care for Mom, which many people aren't lucky enough to find in a company.
Buying our new home last year was so enormously stressful that it made the first home-buying experience I had seem like a big party, one where I got a house at the end. The purchase was stressful. The move was stressful, in so many ways. We're still unpacking. All that aside, I am so fortunate to be living in our beautiful house in the trees. Birds fill our yard. We have a pond. We share a huge space for CK's office and my studio/office space. Really, it is just such a blessing that I'm so grateful for.
CK remains a thoughtful, loving partner in our life together. Yes, it is hard sometimes, but I'm so grateful to go through those hard times together with her. We're planning an anniversary adventure, currently with very little actually planned aside from the necessary travel arrangements, some dinner reservations, and an art exhibit to see. We really need a restful holiday together with very few plans, I'm thankful we're able to have adventures together.
All those blessings and my house is filled with flowers. I'm pretty tickled that I've reached a place where buying flowers isn't an infrequent "indulgence". Now my regular purchases of flowers to put in vases throughout the house is just part of our grocery budget. I love seeing the bursts of color all over the house, in some ways it makes me feel more at home and settled.
I look forward to more hikes, more art-making, more laughter, more soaks in our hot tub, a healthier & happier job change, moments of small joy with Mom, and all adventures of life, both large and small, with my wife.
With Mom moving in this past October it seems natural that my blog will start to reflect this new life. I've decided to take a documentary approach to our life with an aging, ill parent, living in our home; mostly pictures, but in posts too. These posts can be found together with the tag "Aging in Place".
As I was prepping meds for Mom this morning, with the spring sunlight streaming in, I was struck by the image of it.
This is usually how I start my Sunday, every two weeks. One of her heart medications is taken every other day, so having a two week "set" makes it work best.
This picture represents one of those milestones for an aging person. The point where this becomes difficult to self-manage is a point where phrases like "Assisted Living" and "Adult Foster Care" begin to be heard. It was one of the reasons we moved Mom in, just helping with this task, along with making sure she's taken the meds, already has helped with her falls and lucidity.
We're trying to help Mom to mostly Age in Place, she no longer can be completely independent, but staying with us keeps in with her community, even if that community largely is just CK and I, well and our herd of animal companions. We're planning to investigate some more community resources for helping us to help Mom.