Like Words Together Reflections from the deep end of Practice.

28Sep/1310

A Year with Mom

CK Teaching Mom to Use iPad - November 2012 - Portland, Oregon

**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.

Mom Watching the Sunset - March 2013 - Kealakekua Bay, Hawaii

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.

Comments (10) Trackbacks (0)
  1. Thank you for both writing this and sharing it. I decided to turn off Dr. Phil and read this first, even though I am very tired today, as I thought it was important.

    As you know, I also grew up in an abusive family (emotional abuse/violence etc coming from my grandparents and my parents. the etc refers to alchoholism further back in the family history). There are also mental health issues in my family. My mother loved her children but was caught in an intergenerational cycle of abuse and then died from breast cancer when I was almost 19. Although she loved her children and we knew that, she did a lot of damage. She told me she had to save the other children in the family because I could not be saved. Thus my need, as you pointed out, to learn how to be “a self-rescuing princess.” I no longer remember her at all and that bothers me. Maybe my attempt to erase my past worked too well.

    I have a few observations about what you wrote-

    1. I was treated by a mind/body dr who also does addiction medicine. It seems to me that your mother really needs to be off of the oxycodone completely. but I am not recommending you do this. I am recommending she live elsewhere. as soon as possible.

    2. re her denying things-people who have these kinds of issues are going to lie. that is just the way it is.

    3. Your mother can’t demand respect. She either commands it. or she doesn’t. based on how she treats you. and how can she demand that you respect her when she does not respect you? and respect has to be earned. I don’t believe in the religious command to “honor your father and mother’ if they have been abusive. I think you should treat them with common decency, yes. But respect them if they haven’t earned it and don’t deserve it? no.

    4. What you are dealing with is similar to issues I have with my sister’s family. I lived there at one point after I ended up homeless fighting my disability case. But I had to leave, as it was unhealthy for me to be there.

    5. I have gone to both adult children of alcoholic (or dysfunctional families) 12 step meetings and codependents anonymous 12 step meetings. This is something like that might benefit you. I could help you find a meeting and/or go with you, if that is something you feel would be helpful. You need to know that you didn’t cause this and you can’t cure it. or control or change your mother. regardless of how much you might want to.

    6. You wrote-”We knew that with some oversight with medication and meals, and some company, that she would stabilize”
    I think you had hoped that would include emotionally, that she would stop being abusive. Unfortunately, that is not the way it works.

    7. I give CK credit for helping with all of this. especially the diabetes management.

    8. you wrote “I’ve got her to stop taking Ativan too since most of the stresses that had given her last physician cause to prescribe it.” (What is missing from this sentence?)

    9. Your mother may never take any responsibility for her behavior. and if you want to be emotionally healthy, you are going to have to find a way to accept that. My father is still alive so I still deal with these issues, but my mother and grandparents have died so no longer have the option to ever take responsibility for anything they did.

    10. You can’t fix this. She needs to be living elsewhere. But you can work on the issues you inevitably have as a result of growing up with and still dealing with your mother. and you can work on how it has affected your relationship with CK and your other relationships.

    I hope this helps.
    Here’s a hug for you and CK.
    Merilyn

    • Thank you so much for taking the time to read this and share your experience. Now you know that I have a little personal experience with that whole “self-rescuing princess” mindset. It is what I’ve needed to do my whole life.

      Thanks also for calling out that very unclear bit about the Ativan. I think I was trying to rewrite that around midnight today. I’ve updated that area quite a lot.

      Just thank you so much.

  2. You took on an immense challenge, and you succeeded. Maybe not the success you were looking for, but success none the less. You’ve improved her health, given her time and helped her be more stable. You’ve prevented more falls and no doubt other medical disasters. Maybe you can’t realize the dream you had of finally having a reasonable and friendly adult relationship with her, but you can say with confidence that you’ve done your best. If she enters a form of full time care now, at least she does so from a better position of health and on a more sensible drugs regime and that’s because of the hard work you’ve put in.

    Embrace and celebrate those achievements. Let go, when you can, the heartache of goals not met. Remember that people, even parents, are responsible for their own choices. Be glad too, that you did not learn the sad lesson of only connecting to others in misery.

    All of my best to you and CK. Much love and admiration. You’ve done amazing things and you should be proud of yourselves regardless of what comes next.

    • Thank you so much, Jacinta. I am trying to keep a hold of the success of stabilizing her health with CK’s help. The grief this past year has brought has just made it hard to feel celebratory about this particular success. Mom resents this success, which also clouds it. I’m mindful that once we’ve moved onto a new place, it may be easier to actually rest in a sense of accomplishment over all we’ve done.

  3. Wow, what a journey you & Christie have been experiencing! Thanks for sharing your story, Shari. Actually, you could have been talking about the relationships between many daughters and our mothers. A wise therapist once told me that my need for mom’s approval and demonstration of love were “frozen needs”. These needs are frozen in time from my childhood. They were needs that cannot be and were not ever fulfilled.
    You’ve done your best; you’ve been a good daughter. Now it’s time to cut your losses. You and Christie deserve the opportunity to lovingly nurture yourselves and each other.
    Best!
    AJ

    • AJ, thank you for sharing your experience and sharing the insight from your therapist. Honestly, finally writing this openly about Mom has made space for others to share their own experiences. It is helping me feel like I’m some lone, solitary aberration of a daughter.

      That advice is a good thing to reflect upon, I know there’s a pretty vast depth of unmet needs in my history.

  4. Sorry to hear you are going through particularly tough times. I hope things feel better soon. I know both you and ck have been trying so hard to make an unworkable situation work.

  5. Hugs. I remember you having many of the same kind of issues with her when you were younger. It confused me that she never seemed to be on your side.
    We had problems with my Grandmother being abusive to Mommo when she (Mommo) was providing hospice care. Some people are not capable of being loving and caring about how their behavior affects others. You did your best to keep her healthy and happy . Now it is time to take care of yourself and CK.

    Sammo

    • Oh Sammo, I’m both so grateful and so sad to see your words. CK commented on your having that insight so many years ago. Just more chipping away at my hope that it wasn’t that bad. Love you very much.


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