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.

17Mar/136

Documenting Life: Aging in Place

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.

Sunday Mornings with Mom

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.

16Mar/130

Ticking Away the Moments

I look back at this blog and realize that two months have whooshed on by. One of those weeks was spent celebrating Mom's 70th birthday in on the Big Island of Hawai'i, which also felt like it went by far too quickly.

It was a bittersweet trip. Mom was delighted to be there, but the rigors of travel exhausted her. Her blood levels fell, in fact we spent the morning at the Kaiser Infusion Center having a transfusion of blood and platelets. The flight home was arduous, with her saying she was hallucinating and constantly fighting with me when I'd remind her that her bag needed to stay under the seat, that she needed to not hold her cane until the plane was on the ground, etc. I feel like we'll never take a big trip with her again. CK thinks maybe we might, but if we're able to bear the cost of first class tickets. Mom's always wanted to go to EPCOT and I'd really hoped she might be able to do some of these things.

Some weeks are better for Mom, but in general she seems afraid of the world and too content to just while away the hours listening to books on tape or watching shows on the Lifetime channel. To me these all seem to be the same story line of families facing challenge that they greet with Faith and are therefore led to a happy ending. Improbable and so narrow, I don't seem my life reflected in these stories at all, that I find them grating. I worry that this consumption of brain-candy stories to be worrisome. When I urge some engagement with her peers, attending some activities at a local senior center, she professes too great a fear of venturing into any group.

Looking back, I think Mom's always had some level of social anxiety and I think she's sabotaged a lot of connections. When you add to that her deteriorating eyesight and the legacy of the emotional and financial abuse she suffered at the hands of her husband's family, I can connect it all to this fear of joining any kind of group. That said, it is hard to watch her passive consumption of mindless entertainment, ticking away the moments that make up a dull day.

When I was younger she at least tried some new things, particularly arts and crafts. She developed some skill, and enjoyed tole-painting, sewing things, some quilting, and a little machine embroidery. All pursuits that the pain in her hands and the failing eyes have taken from her life. I cannot say the same for reading materials and shows, I always remember her with a stack of Harlequin Romance novels and a fondness for movies like An Officer and a Gentleman and Ice Castles.

She resents my prodding, it makes her feel bad about herself. She hurts, profoundly. Her health has never really been well in my lifetime. It is hard to greet pain and keep going, I know this from personal experience. It takes a lot of will to try and keep moving with, and through the pain. I especially know that when the pain increases the fatigue it brings make it even more difficult to stay engaged and moving, however, I know at those times that it vitally important to keep trying.

And yet, she suffers profoundly. Physically, emotionally, mentally, she suffers. Is it wrong for her to hope to ease into death and go to the heaven she imagines in her mind? Is that so wrong for her to want that? Is it just that Dylan Thomas made too deep and lasting an impression on my young mind that I recoil at the thought of pursing, of longing for an easy death?

The other night I shared with CK that I felt like she's just giving up and that it hurts. I felt like both my biological father and my step-dad both just turned toward pleasure, pleasure that was surely killing them, and refused to do the hard work to stay alive and present, part of my life. It hurts a lot to feel like my Mom's doing the same thing.

Watching sunset at Kealakekua Bay - Hawaii - March 2013