Posted in Inside Lane

A Twinkle on the Barbed Wire

I have a list of things I need to do for my mom that is about as long as my arm. Every one of those things involves a minimum of two phone calls that will probably last at least 5 minutes each, and should culminate in an appointment scheduled. The scheduled appointment will mean me having to take time off from work. Every one of those appointments means going to collect my mother from her home, getting her in and out of the appointment, then getting her back home.

It’s a lot just in the steps it takes to accomplish each task–what I need to know about her medical history, the amount of identifying information I have to be prepared to share, and the calendar juggling. But when I get to the part of having to think about what I need to have prepared in order to meet her mental and emotional needs from the door of the memory care unit to my car, then from my car to the doctor’s office, then inside…I can’t. I can’t even type it all out.

I need to have drinks and snacks available for her, but only a certain kind.

I need to be mentally prepared for whatever she’s going to throw at me in the way of her own perception and understanding of what is going on.

I have to be ready to correct her when she accidentally misinforms the nurses and doctors, then gets angry or hurt by my correction.

I have to be ready when the doctor judges me for not knowing something, or for not having taken over my mother’s health quickly enough.

I have to be ready for her to cry when I take her home.

That’s the worst one.

The last time I took her to the doctor and took her home, she had seemed fine. She’d been great. She understood (or seemed to understand) where we were going. Then, as soon as I got her situated and said goodbye, it was like someone flipped a switch.

She went from smiling and happy to sheer terror in a blink. It is really, really hard to push her hands away while she’s clinging to my arms out of fear.

“I only feel safe when I can see your face,” she tells me all the time.

That’s a horrible way to have to live.

I don’t know much about dementia, or about what the brain becomes when your reality receptors are damaged. What I do know is that my mom has regressed to the base fears she always expressed to me in my childhood. What I see is that all my mom’s defenses against her root hurts are peeled back, leaving only a raw, vulnerable childlike mentality.

I can see how much of my mom’s life was just powering through fear–if she could outrun it or find physical ways to hide from it, it was okay. But when that ability failed her…

So, I find myself trying to root out my core fears, and trying to build something different into my son. I always come back to my visit to Dachau, when I stood in the middle of that camp wondering what the survivors saw and where they found the will to live. As a free woman in a prison camp, my perception of reality was different. I found myself wondering what I would have seen as a prisoner–what I would have missed because of my circumstance?

I wondered if I would have missed the beauty of the blanket of snow? I wondered if I would have missed he twinkle lights the sun was making out of the ice covered barbed wire? I wondered if I could have found even the smallest spark of joy–because I believe that is the only way to survive long-term. I made a decision in that place to change my own attitude about a lot of things.

I made the decision to look for the twinkle on the barbed wire.

That changed my life.

When my mom calls me and she’s panicking, I ask her to look around her room, and I ask her to identify something I’ve put in there that I know will spark joy.  “Mom, tell me what you can see?” “I see my pictures.” “And you love those pictures. Look at that one of Thor. Remember how happy his smile made you?” “Oh, yes. Oh, yes.” Most of the time, that will snap her back enough that I can talk her down from the ledge.

“You know,” a nurse said to me, “when your mama is getting so upset, I tell her to look around. You have filled her room with beautiful things. You have worked so hard to make her a home. I say to her, ‘Mama, look around you. There is beauty all around you.’ She says, ‘But I only want my daughter. It doesn’t matter without my daughter.'”

It’s what she’s told me all my life. Without me, there is no reason to live. Now, without easy access to me, she finds life so hard.

To my son, I say, “You know, I had a really great life before you came along. You made it so much better! It was like I had a great lamp, but then when you came, I got a better light bulb. All the things I already loved I could see even better. And, I got a better view of things I could clean up and remodel. You being in the world has made me a better person. Thank you.”

And, “Kid, you have to be able to find the silver lining. It doesn’t mean your pain isn’t real. It doesn’t mean your situation isn’t a shit sandwich. It just means that you can do the work of finding beauty. Finding that beauty will give you motivation and reason to work your way out of any situation you are in. And, worst case scenario, at least you can go out with a smile on your face.” (I try to keep it real. No matter how hard you work, sometimes the bad guy wins. Sometimes the best we can do is go out smiling.)

You can’t make another person responsible for provisioning your mental and emotional health. You have to be able to mine your own joy.

Posted in Inside Lane


I need to get my mom to a doctor’s appointment next week, and I haven’t had her out by myself since June 14, so I’m a little nervous. I’m a lot nervous. She’s a lot of work. To practice, I am going to take her out to breakfast tomorrow. I’ve been planning this in my head for days.

If I want to get her to breakfast at her favorite place (Old West Cafe) before the rush, I need to get her there by 8AM. This means I will need to arrive at memory care by 7AM because I’ll need to be sure she is dressed, lucid, and has used the toilet. It will take at least 30 minutes to get her into the wheelchair to get her out the door.

I’m not even sure if I can get her into my car. I have to get her wheelchair out the door, get my car up to the driveway (and hope she doesn’t try to get out of her wheelchair and follow me when I go to get the car), get her from the wheelchair into the passenger seat, and then get the wheelchair into the back of my car (hoping she doesn’t try to get out of the car while I do this), and then rinse and repeat to get her in and out of the restaurant. I don’t have a handicapped tag for my car, so I have to park in regular spaces–that’s it’s own battle.

I will need to ask for a table near the toilets because halfway through the meal she is going to need to go, and I will have to take her.

This means I cannot take a purse to the restaurant with me because I can’t wrangle a bag and my mother, so I need to plan to wear something with pockets, and just to take my phone/wallet and car keys.

I need to keep her from reaching out and grabbing people, or grabbing at people’s children–a habit she formed a year ago. If she sees someone she thinks is attractive, she grabs for them with claw hands. No one likes this, but so far, only children have screamed and cowered.

I need to make sure I have the entire back of my car cleared for her wheelchair. I need to be ready to haul that wheelchair in and out of my car 4 times.

I need to have bottled water available in my car for the 5 minute trip to the restaurant, a towel in case she has an accident, and tissues in case she cries. As I think about it, I should probably have some bandaids in case she bumps into something and her skin abrades.

I need to be mentally prepared for it to take 45 minutes for my mom to eat half a biscuit, one egg, and half a piece of bacon. She likes to take a long time chewing now, and sometimes I’m afraid she’s forgotten she’s supposed to swallow. I need to be mentally prepared for her to be confused and possibly angry because of the confusion. I need to be emotionally prepared for her to cry and beg me to let her come live in my house, or ask me why my dad hasn’t come to see her, or why she is so alone and has no one who loves her.

I have to be able to anticipate her needs, so I have to pack a Gerry Bag–the geriatric version of a diaper bag–including a couple of pull-ups, a snack, and a small photo album to act as both a focal point and a distraction, and a way to change conversation when she starts asking me questions neither of us really wants answered.

Then, I have to fight the battle of getting her back into the memory care. All I can hope is that the trip and the heavy food tire her out, so she’ll want a nap and she won’t fight too much when I try to get her back inside her gilded cage.

Wish me luck.


Posted in Inside Lane

Geezer Love

When my parents split up, my mother fell to pieces. I spent literal years mopping up tears and offering sympathy, empathy, and listening to things no daughter should ever have to hear. She swore she would never love again. My father was the one and only, and if she couldn’t have him, she would have no one. No one! Augh! Dramatic flounce!

She would never love again, never trust again, never even look at another man–she swore it. And, for the better part of 27 years, she kept her word. Then, one day in 2018, I went to pick her up from Independent Living to take her to lunch and she announced that she was engaged.

I knew my mom had been sitting with a man at lunch and dinner meals, and had forgone the company of her regular little crew of blue-hairs for his. I figured she had some feelings for him, but it was really beyond my capacity of belief to even imagine she was falling in love. Especially since all of this happened over the course of 3 weeks.
So, my mom told me she wanted to marry this dude, and I said great. Because… Well, at that point she seemed lucid enough to make that kind of decision. She couldn’t manage her finances, but the heart wants what it wants, and it’s not like I could keep them apart anyway. They lived down the hall from each other, and more often than not, my mom was at his place, soaking up the sunshine of his smile.
I’m going to long story short you here and tell you that things fell apart spectacularly in another month, leaving my mother devastated, broken-hearted, and as sure she would never love again as she had been in 1991.
I was not prepared to deal with my mother’s love life. I tried to be encouraging and happy for her, but also keep my feet on the ground for her because there’s that old saying, “fast flames flame out fast.”
It was weirdly like parenting a young teen. Neither of these people could drive. Neither had jobs, or control of their finances. It was like two kids at boarding school, who met in the dining room and hooked up in their dorm rooms after classes. And, neither had full executive function. The problem solving, long-term planning parts of their brains were both kaput.
But, they were in looooooooooooove, and as handsy and grossly horny as high schoolers. I was so not prepared to see a man gnawing on my elderly mother’s face and groping her boob. It was like two sock puppets trying to ingest one another.
As ill-prepared as I was for the romance, the breakup was a blitzkrieg assault on all my skills. It had been almost 30 years since my mom had kissed a man, and she’d fallen hard and fast for this one, who couldn’t keep his hands off of her. Then suddenly, he hated her laugh, hated her voice, hated that she wasn’t from Texas, hated that she didn’t like to be outside, thought she might be planning to steal his money, and…five minutes later, he just wanted to be friends and talk to her about the other women he fancied, and called her ten times a day just to talk and tell her he loved her.
I was not prepared to be my mother’s girlfriend and sounding board, or to pick up her broken pieces…again. She fell into depression and didn’t want to go downstairs to eat because he was there. She didn’t want to face her friends because she was afraid they had gossiped about her. And, she floundered around in the fear that she was unloveable and inherently flawed. You know, the same things we all fear when we have a breakup, only the “hopeful” part of her brain was also calcified.
Ultimately, even after he moved to a different community this dude kept calling her and stringing her along. Maybe they could work it out. Maybe things would get better. Maybe they could still get married. Until, after we toured the community where he lived and we ran into him, and he called me to say that my mother had the wrong idea and he didn’t want her to live anywhere near him.
He called me again when she didn’t answer her phone for 48 hours (because she was in the hospital recovering from a stroke and I had ignored 20 dials from him) to ask me to BREAK UP WITH HER FOR HIM.
I did this by blocking his phone number.
When I moved her into the new community I eyeballed the ratio of men to women and kind of hoped we’d be safe from romance. I am stupidly naive. She’s been there for 2.5 weeks and she has a boyfriend.
She had pointed him out to me on Saturday and said, I kid you not, “that’s a cowboy I’d like to ride.” I changed the subject because do not want. Do. Not. Want.
I discovered that the feeling might be mutual when the man’s daughter and WIFE introduced themselves to me last night, and told me that he and my mother had become “partners”. He doesn’t remember he’s married, you see. His wife seemed very pleased for him. His daughter did not.
I think I smiled at them? Then, I got my mother out of the common room and hid in her room with her until I saw them leave.
I’m still not ready for this, but I know more than I did last time. Also, when my son starts dating, I’ve got this under my belt and might be a better help to him.
That said, here’s what I learned when your Old wants to get married:
  • Finances can be a deal-breaker. This is what ultimately shut it down for Mom and her swain. He was receiving his deceased wife’s pension, and if he remarried, that part of his income would go away.
  • Benefits can improve. If my mom had married this guy, her SSI benefit would have increased. But, benefits can also decrease because with things like Medicaid, as the household income rises, the amount of the benefit falls.
  • It’s less expensive to share housing, obviously. While it would have cost one of the then-happy couple $2700 a month to live in my mom’s apartment, adding another body to the household would only have increased the rent by $800, so they would both have benefitted from a reduction in cost of living.
  • But if you think blending families is hard when you have small kids, imagine trying to do it when your kids are the ones pushing your wheelchair. Then, you’ve got all the moving pieces of estate planning, wills, and medical directives, and who will run the joint finances. You might end up with a smart, organized kid who hires an attorney to protect her parent’s finances and hers and her siblings’ inheritance, or you might end up with a kid like me who says, “Can’t we just sign a deal that says you guys keep all your stuff, and my mom keeps all her stuff, and when one of them dies, they just revert to where they were today?” (Hope you have the one who lawyers up. She’s probably a lot smarter and less naive.)
  • You’re going to have to manage your own emotions, and you might have to manage it like your parent is your child. Give them the freedom to love and be loved, but be there to protect their interests. Your Old is still a person, and people want to be loved. If they can find someone who makes them happy, be happy for them. Wise like a serpent, harmless as a dove.
  • And, be prepared to talk to your Old about STDs. I did have this conversation with my mother and it was awful for both of us, but I’d rather be embarrassed for 15 minutes than have to have her swabbed for chlamydia.
Posted in Inside Lane

Prepared for Nothing

When I found out I was pregnant with Thor, I got right to work. I had daycare sorted out before my second sonogram. I had my ready-bag packed before I was showing. I knew where the best school districts were, and what it was going to take for us to be able to move into one by the time the Braxton Hicks started.
After he was born, I gave myself 2 weeks, then I started practicing time management for how we were going to get up, get dressed and get me to work on time while he was eating, pooping, barfing and crying all over me. I mean, I started getting us up drilling for how long it took to get him ready, then get me ready, then get him ready again, get out the door, drive the distance to where his daycare would be, estimate how long it would take to walk him in, drop him off, and get back into the car, then drive myself to work. By the time I went back to work when he was 5 weeks old, I was ready for everything but the actual emotion of leaving him in someone else’s arms.
You can’t drill for emotion.
I’ve been preparing myself for my mom to need memory care for almost two years. Shortly after moving her into Independent Living, we started working with home health care to try and help get her diabetes under control. After her third visit, the RN asked me to come talk to her privately.
“Your mom is going to need memory care,” she said. “And you need to prepare yourself for it. She’s doing okay right now, but she’s going to start going downhill. I’ve seen this a lot. And…sweetie…you’re going to need to do this sooner rather than later.”
It was a sad confirmation for me, but it validated my fears and gave me permission to start calling around.
I know it’s declasse to talk about money. I’m going to show you my roots by doing just that because money has been one of the biggest stressors for me in this journey.
For my mom to live in Independent Living with 3 meals a day provided and nothing else, her rent was $2700 a month–this was after I negotiated like my life depended on it.
This left my mom with $300 a month to cover any other expenses of things she needed/wanted. She needed phone service and insurance, personal grooming and prescriptions. She wanted a fully stocked refrigerator and bottled water, shopping trips and to buy things for her grandson.
So, it was either say no and just resign myself to the fact that she lived in a very fancy prison, or help fund her. That’s my mom. I’m not going to tell her she can’t have bottled water and a pair of new shoes. However, I will tell her she can’t have cases of Smart water, and she can only get one pair of new shoes.
When I started calling around to get pricing for memory care, I like to have passed out. Pricing was starting in the low $5000s. We couldn’t afford that. We just couldn’t.
That really propelled me forward into getting her house sold. That, and needing to get out from under the utility bills and insurance we were paying there.  I needed that nest egg for her.
Obviously, we are incredibly fortunate that my mom has an income at all, and that I have a job that lets me make up the differences, but once we moved her to Assisted Living (at $3600 a month) and then to memory care (at $4700 a month), I started having to take a piece of savings away every month to cover her rent.
I started doing Death Math.
Death Math goes like this: If it costs this much to keep you alive, and you have this much in savings, then you can afford to live this many years before I have to start looking for less appetizing solutions for you, or start a GoFundMyOld account to keep you in the good diapers.
My mom’s Death Math isn’t looking good. If she lives to be her father’s age, or her mother’s when they died, she’s looking at living 5 years longer than her savings account.
It’s gross and it’s a terrible way to think. But you know what? The memory care where Mom is is worth EVERY PENNY. She is safe, she is cared for, she is still able to kind of appreciate it. In five years, if her decline continues apace, she won’t know a mansion from a public restroom stall by the time I have to look for a place that will accept her on Medicaid.
As my husband said, “Drink the good wine first.”
But you see there? I’ve got all the numbers planned. I know exactly where she’ll go when she has to move. I’m ready.
I’ve been ready. I’ve been prepared (and thank god–I’ll tell you about that in another blog) for every eventuality. But I was not prepared for the moment I was sitting across from her as she babbled nonsense and I realized, “I miss my mom.”
Just like I was not prepared for the agony of dropping off my five-week-old baby, I was not prepared for the moment when I realized my mom was gone. Yeah, she was sitting right there in front of me, but that was just her body. My mom was gone.
My mom moving into memory care has meant less for me to do. In fact, it means that other than visiting, making sure she has pull-ups, and the occasional appointment, she’s out of my hands. That has meant me having more mental time and that has meant having time to miss her. I hadn’t even realized that was a luxury.
My mom’s been gone for two years. I’ve taken care of someone who looks like her, and who shares some personality traits, but I haven’t been able to have a conversation with that woman for two years. In the last two months, I haven’t even been able to get her to remember she saw me the day prior.
I wasn’t and am still not prepared for that.
Posted in Inside Lane

Well, This is Alarming

November 9, 2017, my son was diagnosed with strep throat and I breathed a sigh of relief. Since finding my mother, dazed and confused, I’d been trying to talk her into going to the doctor, and she had kept refusing. Having had Thor coughing in her face for days, I finally had an excuse to drag her to the urgent care. She was not happy about it, but she agreed that if Thor had strep, he had probably given it to her.

The strep test came back negative, but after three different people (an RN, a PA, and an MD) had used two different blood pressure machines and one old-school hand-pump cuff to get a read from my mother’s arm, we won a trip to the emergency room. We could have taken an ambulance if we’d wanted–that’s how high Mom’s blood pressure was. She refused.

Eight hours later, we were released from the ER with an armful of prescriptions and a referral to a GP for follow-up.



Those were the numbers I wrote down in my little notebook. I was carrying it with me by that point because whenever I thought of something I needed to do for my mother, I would write it down so I wouldn’t forget.

Those were the readings for my mother’s blood pressure and blood sugar when we got to the emergency room. They let us leave when they got her down to 130/82 and 236.

“I don’t know what these numbers mean,” I told the attending physician in the ER.

“They mean your mother is at high risk of stroke or death.”

“I’m not having a stroke!” My mother insisted, then started muttering about being healed in the name of Jesus.

The physician didn’t quite ignore her, but clearly, I was the one to talk to. I got a long lecture on diabetes and heart disease, but not nearly long enough because at that point in my life all I knew about either was that you shouldn’t have sugar with one, salt with the other, and both would kill you.

However, it was the first in a long line of doctors talking to me like I was an abusive pet owner, who had willfully ignored the health of my mother. I’d only gotten hold of her a few weeks prior! I’d barely gotten her to the urgent care! I knew she needed medical intervention, but you try moving a 285 lb woman anywhere she doesn’t want to go.

I ignored the tone and just wrote notes in my book. I figured I’d need that for the follow-up with the office doctor.

My mom home and tucked in bed, I went home and started scouring the internet. I’m honestly surprised she hadn’t stroked out or died. The internet was pretty sure it was impossible for her to be alive, much less mobile and communicative. So, I filled her prescriptions, bought her a day/night pill container and got to work getting her healthy.

The first step was a visit with the office doctor who expressed some surprise at the fact she had survived the ordeal. Thank goodness for strep, right? Another 24 hours at those levels and she probably would have died, he said.

I pulled out my little book and read him what I’d written, confirming the numbers I’d taken from urgent care to the ER, and the numbers the ER had sent us home with. I showed photos of the pill bottles to confirm medication and dosages, and dutifully wrote down everything he said.

When he asked me why my mother had not been on medication previously, I looked to her. She pretended not to see me. She studied the wall, her chin jutting out stubbornly. “She doesn’t like medication,” I told him. “I know she’s had prescriptions for her heart, but she didn’t want to take them. She takes…herbs.”

He hummed and made a notation. “How long has she had diabetes?”

“Erm… Mom? Didn’t Dr. Chang make that diagnosis?”

“He said I had it, but I don’t.”

I thought of all the banana splits and 2 liters she had consumed in defiance of Dr. Chang’s declaration. She took licorice root, she said, and that was enough to balance her sugars. I felt my own blood pressure starting to rise.

I said to the doctor, “At least ten years. I think that’s the last time she’s had a regular doctor. He said she had diabetes, so she quit going to see him.”

“I don’t have it,” my mother said, sullenly.

“Well, Mrs. M,” the doctor said, “you actually do. That’s probably what has led to a lot of your confusion. When your blood sugar is that high, and when your blood pressure is that high, it affects blood flow to your brain and makes it hard for you to think.”

Her attitude turned on a dime. “Oh!” She gasped. “I didn’t know that!”

“Yes, you did you old fart,” I thought angrily. “You’ve told people that yourself!”

We left there with another prescription and referrals to three specialists.

“He doesn’t know what he’s talking about,” my mother huffed as I fastened her seatbelt. “We need to go to the Vitamin store.”

Over the course of the next couple of weeks it became clear that my mom couldn’t remember how to take medicine on a schedule. There was not enough Gingko Biloba in the world. I had already put alarms in her phone to tell her when to go to breakfast, lunch, and dinner, and I was afraid more alarms would confuse her.

After several failed trials, this is what I came up with that worked:

First, on the advice of my cousin, I bought my mom an Alzheimer’s Clock.


This clock would show her the Day of the Week, the Date, the Time, and the Time of Day.

Next, I bought her a pill case that alarmed and chirped at her.

pill case


She was sure she could remember her morning medicine, so I put her nighttime pills in the case and set the alarm to go off at 8PM. I put the pill case in front of the clock. She would be able to look at the clock, see the Day, match it to the day on the pill case and medicate herself.

For her morning medicine, I took ziploc baggies and taped them at eye level to the cabinets above her kitchenette. I wrote on each bag: Day of the Week: MONDAY, Time of Day: MORNING. And, this worked really well until it didn’t–so, for about a year once she got into the habit.

For us, the biggest problem was that my mom just hates taking medicine. She doesn’t believe in it. We struggled for a long time until I lost my temper and asked her if she wanted to see my son graduate from high school. She said she did. I asked her if she still wanted him to come and visit her after school (she lived across the street from his middle school and he could walk over.) She said she did.

I told her if she didn’t take her medicine, she would die before he made it to high school, and if she didn’t take her medicine, I wasn’t letting him come over alone because I didn’t want him to be the one to find her cold, dead body. Whatever Vascular Dementia had already done to her brain, those words made it through the squeezed out blood vessels and she heard me.

And, until she just wasn’t able to manage it for herself anymore, she took her medicine. Getting her to the appropriate doctor visits, though, that was another story.