A Very Unique Bird...continued

Once Mary knew where I lived, it wasn’t long before I noticed her walking past my house more often, that blue eyeshadow and a puffy red jacket which came down to her knees.  Her hat was bright robin’s egg blue and crocheted like something you’d find in a hospital gift shop. I’m sure she bought it to match her make-up which only consisted of the eyeshadow. She wore light-colored jeans that were old and soft with elastic at the waist.  On appearance alone, she was hard to miss. 

Whenever Mary happened to catch me outside, she’d want to talk.  What better place to yell back and forth than over the chainlink fence?

“Oh, haha!  It’s you! Haha!  How are you?” she’d say as if it always was a surprise.  The fence came up to her armpits. She’d place one hand over the other on the chainlink and lean forward, as if to hear me better even though I knew she couldn’t.

“I’m good, Mary. How are you?” 

“This is where you live,” she ignored (or didn’t hear) my question.  “I keep an eye on it. I keep an eye on it for you.”  She pointed at me.  I couldn’t tell if she was keeping an eye on my house or on me in particular.  

“Thanks, Mary.”

“Yeah, so what was that red truck doing last night?  What was the red truck doing here?  This morning too.  And this weekend.  You have a boyfriend? You have a boyfriend, Jill?”

“Mary!”

“Oh, you don’t want to talk about it, haha.  Okay, well I’ll keep an eye on the truck. I’ll keep an eye on it.  You have a boyfriend?”

“Mary!”

“I know, I know!  Ah-haha!” she’d laugh and pat the air with her hand like my response was exactly what she expected.  “You don’t want to tell me. Well, you must be happy.”  

She’d wave her hand more as if to tell me everything was okay and continued walking down the sidewalk.  

After I visited Mary the first time, I realized we’d need more time to make some phone calls about a medical bill problem she was having.  Somehow Mary had two identical bills for a visit in January — one from the hospital and the other from the hospital’s radiology group. Both were for the entire cost of a mammogram and neither one showed that the claim had been sent to Medicare.  I walked down to Mary’s house one morning to help her call the hospital’s billing department.   

I could tell from how Mary paid the bills that her husband had managed the household finances in their marriage.  Mary knew how to write the checks and had a simple budget but in terms of trouble-shooting when there were problems, she was in over her head now.  It wasn’t something she was likely to learn at this point in her life either. In social work, we sometimes call this a “severe division of labor”. Mary’s role was cleaning and cooking; her husband took care of the yard and finances.  When he died, Mary didn’t have the skills to do more than make sure the bills were paid. Now I was trying to explain to the person on the phone why I was helping Mary.  

“Mary,” I said very loudly.  “This woman wants to know if I can have permission to talk about your bills with her.”

“What?!” she crawked.  I pointed at the bill. 

“Can I talk with this woman about your bill?”

“Of course!  I thought that’s what you were here for!”

“Mary,” I pointed at my cell phone.  “You have to TELL her so that she can talk to me or otherwise she’s not allowed to.”

Mary leaned forward and placed the side of her face on my cell phone as if she was talking on it, even though I had it on speaker phone.

“Hello?!  Hello?”  I could hear the woman speaking loudly but Mary couldn’t. 

“You can talk to her. I hired her to help me…” Mary looked at me.  “Well, I guess I didn’t hire you because you’re free! Hahahaha!”

“Mary.”  

Between keeping Mary on track and explaining to the representative that Mary had two bills for the same scan, we were on the phone for 45 minutes.  The women at the hospital agreed to look into the situation.  Mary was in the backroom of the house trying to find something.  

“Mary,” I called.  “I have to go back to work.”  I made a note on her bills that the hospital would call me at work once they figured out where the error happened.  

Mary came back into the room quite proud of herself and holding something in a white plastic grocery bag.

“Here! This is for helping me. This is for helping me out!” She handed it to me.  It was a large bottle of Dove body wash.

“Aw, Mary, thank you.”  We were hired with state and federal dollars, though, which meant no taking gifts from taxpayers though.  “I’m sorry but I’m not allowed to take gifts.”

“Take it,” she said and pushed it into my arms.  “Take it; it’s for you.” 

“I can’t,” I said.  “I’m not allowed to.”

“Take it!” she demanded.  “Take it!”  And then Mary shoved the body wash into me as hard as she could with one hand and pushed me with the other.  I realized that I was being shoved by a woman in her 80’s.

“Okay!” I finally said.  She’d pushed me back a few steps.  “Thank you.”

Mary smiled out from underneath her blue eyeshadow as if nothing had happened.  

“Have a good day!”  

In social work, people come in and out of your life.  Even the most favorite clients only stay for a period of time and then they leave.  You learn to hold it loosely. Still there’s a lightness that you feel when people you’ve connected with appear in your life again.  In the case of Mary, it had been awhile since I’d seen her in the neighborhood. I thought of her often and knew she hadn’t moved because her son still drove his Corvette too fast down our street.  I checked the obituaries just in case she’d died without me knowing it. Then in the early summer, I received a phone call.

“Jill?  Jill? I’m in a bad way.  A bad way, Jill!” I knew immediately from the pitch of her tone that it was Mary.  She sounded distressed.  

“What’s going on, Mary?”  I tried to make my voice loud so she could hear me.

“Well, I had to go to the hospital…the hospital, Jill!”

“I knew you went in January — did you have to go since then?”  She told me the story.

“I was really tired at the pancake feed.  You know the pancake feed?” Mary had been a dearly loved volunteer at the Masonic Lodge for years.  “I was cleaning dishes, so many dishes. They made me sit in a chair. Then I just passed out!”

“Oh no!  Did they call an ambulance?”

“Yeah, they took me to the emergency room.  I was there for three or four hours, Jill….three or four HOURS!”

“Did they figure out what was wrong?” I asked.  Poor Mary!

“Yeah.  I had an infection in my eucharist!  My eucharist, Jill!”

I was so thankful she was alright but I couldn’t keep from smiling.

“Your eucharist?!”  

“Yeah,” she sighed.  She was still trying to wrap her head around the situation.

“Maybe your uterus?”

“That’s what I said!  I said that: I had an infection in my eucharist!”

“I’m so sorry.”

“I’m feeling better but my yard is a mess.”

“Can your son help?” I asked, knowing that her son was not particularly helpful.

“He just ignores me.”

“Well, should we see if we can find a volunteer for you?” I could hear Mary getting tired but was glad she thought to check in with me.

“This lady stopped by and said she could help,” Mary told me.

“Do you trust her?” 

“Well, yeah, but I couldn’t understand her.  I couldn’t understand her, Jill….”

“You couldn’t understand her?”

“She spoke Mexican!”

“Spanish.”

“What?!” 

I couldn’t tell if she couldn’t hear me or just was in too much distress to listen. 

“Okay, but Mary, do you think she can help you?”

“Yeah, I think so.”

“Okay, will you call me if that doesn’t work for you?”

“I will.”

“Okay, take care of yourself, Mary.  Call if you need anything.”

And I knew she would.

* * *

Western Care Partners guides families and individuals through the maze of resources and emotions that come with getting older or having a chronic condition.  We screen for services, facilitate decisions and provide counseling to support you through the difficult situation of needing more help.  Every situation starts with a brief free consultation — contact us: 720-675-9902 or www.westerncarepartners.com.

©Western Care Partners, LLC 2020.  All rights reserved.


A Very Unique Bird Indeed

It wasn’t the fact that Mary’s eye shadow almost matched the Comet she had failed to clean off her toilet seat or that our first call almost got me fired.  Mary — all 100 pounds of her — always stood out because she was my neighbor, she spied on my house, and because she was the first person over 80 to shove me.  That’s not even half the story.

Sweet, sweet Mary was hard of hearing and I’m not even sure how she found our number in the first place; that was, the information and assistance line for the Area Agency on Aging where I worked in Washington State.  It was my first full-time job after joining the masses of being laid off in 2008.  I had no idea what I was doing as an advocate but figured I had a decent moral compass, had read the employee handbook and so far, boy, it was fun to help people.  

Writing can never do justice to the sound of Mary’s voice on the phone.  Her voice sort of wailed, like a seabird, and because she couldn’t hear very well, you could hear her throughout the office every time she called.  Bless anyone else who was trying to hold a conversation or train of thought when we heard from Mary. It simply was not going to happen. If I turned her down on the headset, she couldn’t hear me so every time she called, we resorted to holding the phone away from our heads and yelling.  

“Hello?  Hello?!” a voice crawked the first time she ever called.  Really, there’s no other way to describe it than to make up a word between croak and caw, in the kindest of ways.  “This is Mary. Can you help me?!  I can’t get this man out of my house!” 

Of course this was alarming given that she sounded older, was yelling and I had no idea where she lived.  I quickly realized she wasn’t catching what I was saying back to her.   

“I told him to leave!  Can you? Just tell him to leave.”  I could hear someone talking urgently in the background.  

“Who won’t leave your house, Mary?”  I yelled. So much for niceties and demographics….are you over 60? what do you need help with? do you mind telling me what your income is?  But she had an immediate need.  The phone line went quiet.

“Hello?” I shouted.  A man answered in a normal voice. 

“Hello.”

“Oh, sorry about that.”

“I’m a rep with Ballad Health Shield insurance,” he told me with an annoyed edge.  (It was awhile ago so I’ll make up the details.)

“Get out of my house!” Mary yelled in the background.  

“I help seniors sign up for Medicare plans.  Part C.  Mrs. Sanderson invited me in. She’s going to pay a lot more if she doesn’t have a supplemental,” he was obviously feeling justified about being there.  This was in the early days of Medicare Advantage plans but I had never heard of someone not leaving a woman in her 80’s alone.

“It sounds like you need to leave,” I said.

“She INVITED me here to buy a plan,” he told me with finality.  Mary was still telling him to get out in the background.

“And now she doesn’t WANT to.”  My coworkers were looking at me.  “She TOLD you to get out of her HOUSE.”  

I had looked up Mary’s phone number in our database and realized she lived in my little neighborhood of 50 or 60 homes squashed between the train tracks and the highway.  Danged if I didn’t want to head over there and kick him out myself.  

“Look, I don’t think you understand…” he tried to tell me.

“I understand that she doesn’t WANT you in her house.  That’s what she just told you and I am telling you now.” I took a breath while Mary continued on in the background.  Apparently she didn’t need to breathe.  “If you don’t leave, I will call the police.”  

I was trying to read the case notes as quickly as possible to get a handle on her situation.  Mary had called our office for various things before but it was my first phone call with her.  She’d requested Meals on Wheels and a volunteer to help with home repair, it looked like. The notes said she volunteered with the Masonic Lodge down the street.  I wondered if she was the little older woman who walked by my house, blue eyeshadow for days, her hand bouncing up and down on my chain link fence, looking forward but definitely keeping an eye on things.   

“Who are you?” the man demanded and I told him.  

“Well, expect me to file a complaint.  I have every right to be here — she INVITED me.”  

With that he must’ve put the phone down and left because Mary came back on. 

“He wouldn’t leave.  Oh my goodness!  He wouldn’t leave!  Oh my!”  

While I tried to help Mary calm down (not a small task), it really sounded like she didn’t have much of a support system.  It didn’t help that the only way she could hear me was if I lowered the tone of my voice and spoke loud and gruffly, my “angry eyes” voice.  Even then, her hearing me was only kindof-sortof. Once she calmed down, I tried to ask Mary if she had Medicare but she was discombobulated.  I asked her if I could come over tomorrow and meet her in person; then we could figure all of this out. She agreed and later that afternoon, my boss emailed to find out why the heck she’d received a nasty complaint from Ballad Health Shield about me.  I was duly reprimanded.  

The next day I visited Mary for the first time.  She lived exactly 15 houses away from me and was as loud in person as she was on the phone.  The home entered through her living room and above the mantle hung a huge oil painting of a grey standard poodle.  Mary didn’t always finish her sentences when she was excited or distressed so in-between her, “Oh my god, I didn’t know what to…..Oh, he wouldn’t leave….” and “Thank you for being here, oh thank you so much for coming!” I picked up that she lived with her son who was away at his job washing used cars for a local dealership.  I also picked up that, except for mowing the lawn, he was not able to help her much. When I asked her about it, she dodged the question.

 

“Oh, that’s not his thing…the housework.  That’s what I do! Haha! If he did it, I wouldn’t have a job!”  

It was months before I realized that Mary’s son likely had a developmental disability.  In order to keep him from being institutionalized — the standard back in the day — Mary and her husband had kept their son home from school and cared for him.  The son’s first love was his corvette which I often griped about when he revved it down our quiet street.  

Mary’s house was fairly clean with mid-century modern furniture and a heavy 70s dining room set.  She could barely pull the huge wooden chairs away from the table, gasping as she tried to also tell me about a photo on the wall.  

 

“That….” she grabbed the chair with both hands and tugged.  “…is my husband and THAT….” she pointed to a young handsome Italian man leaning his arms around their shoulders on the deck of a yacht, “…is Riccardo!”  

“Oh, you like Riccardo, huh?  Did something happen with you and Riccardo?”

“Oh!  Well, I’m blushing….haha….you can’t say that.  He is handsome!” Mary could barely get a word out, she was so flustered.  

“Mary,” I said her name often as she seemed to have a hard time staying on track.  “We need to make sure you have the insurance you need. Shall we work on that?”  

For the next hour, we made phone calls and verified that, in spite of her inability to keep the conversation on track, she had actually enrolled in a good Medicare plan and seemed to have a couple of ducks in a row.  There were a few strange medical bills that we still needed to figure out so I promised to come the next week and help her.  

 

“I just can’t get anything done on the phone!” she yelled, not meaning to but also not able to hear herself in her head. 

I pointed at my chest.  “That’s what I’m here for.  We’ll figure it out next week.”

Mary nodded.  “You have to go home now?”

“I do,” I told her.

“Where do you live?” she asked.  I knew this was coming. Ever have it where the person you least expect has a spidey sense about the questions you most don’t want to answer?  I figured I could lie or I could come clean and let her know I lived down the street. It was a small town and she was bound to see me sometime if she hadn’t already.

“My house is just down the street actually.”

“We’re neighbors?!” she 

grabbed my arm.  “I’ll check on your house when I walk. Which one is it?”  So I told her. I didn’t want to linger too long on the subject and started walking toward her door.  

“Nice to meet you, Mary.  See 

you next week!” I pretty much shouted.  I pointed to her mantle and an extravagant urn sitting just to the side of the oil painting.  

“Mary, is that where you keep your husband’s ashes?”

“No way,” she shook her head.  “That’s my dog. My husband’s in the closet.”  She grabbed my arm again and laughed.

This was just the beginning.

(To be continued….)

* * *

Western Care Partners guides families and individuals through the maze of resources and emotions that come with getting older or having a chronic condition.  We screen for services, facilitate decisions and provide counseling to support you through the difficult situation of needing more help. Call or send us an email for more information: 720-675-9902 or www.westerncarepartners.com.

©Western Care Partners, LLC 2020.  All rights reserved.


Fresh Heart: The Art of Not Losing Yourself

I recently asked a client with memory loss, “Who knows you best right now?”  She was very aware of her journey through the early stages of dementia and we were trying to get her feet back under her.  The pieces of her identity which were tied to managing the household, caring for her partner and keeping in touch with family were gone.  She teared up a little and put her hand on her heart, “I’m not sure….” she said.  

“Well, could I tell you who I see?….” I asked.  She nodded and then I told her the pieces of her that stood out to me.  She was talented at making conversations flow smoothly and recognizing when people were kind.  Her sense of taste in clothing tended toward comfortable and outdoorsy with a love for wool. She had beautiful eyes that picked up on everything happening in the room.  We talked about her always being a mother no matter what. I noted that her sense of humor was still very much intact and a lot of the pieces she had always managed alone she was now able to accept help with.  Not easy things but she relaxed as we talked, as if she finally had something to hold onto again.  

Memory loss, however, doesn’t happen in a vacuum.  In the same way, her partner was also experiencing the loss and he admitted that his path included a great deal more anger and grief.  His own disabilities took up a significant amount of mindspace and he said he’d been slow to realize she could no longer initiate the tasks she once did to keep their household afloat.  In fact, he said, it was hard for him to even identify who she was if she wasn’t doing all the things she had once done….as if doing things, he recognized, was the only thing that makes us who we are.  His grief centered on the person who knew him best now wandering aimlessly around the house. Their marriage hadn’t been perfect and he was struggling to figure out how to make things work when they both weren’t at their best and maybe never would be again.  He thought the hardest part would be that she was unable to help him without guidance but the real difficulty, he said, was that he lost his favorite person to talk things over with and she could no longer spontaneously show affection.  

Years ago now, the Area Agency on Aging that I worked for participated in a pilot study for a new model of “family caregiver support”.  The gist of the program was to screen the primary care provider in a situation for burnout and then provide referrals to support the dyad.  

We knew from our work as advocates that the role of caring for someone looked different in every single household.  Some clients called us for a listening ear; others called to figure out how to pay for care. What was new in our experience was the pilot’s evaluation tool for assessing what kind of stress the person experienced in taking care of someone else.  Four pages into the eval, however, a simple tally showed that people were feeling the stress or “burden” from providing care in at least one of four basic areas — financial, social, physical or emotional.  It followed that we could provide resources to address these four areas and, if we provided resources that specifically addressed the kind of burden someone was feeling, the more likely that this support would be successful.  Little did we realize that the organic work we were doing to advocate for clients could actually fit into a system.  

Being a pilot program, the rules and reporting we adhered to were a bit clunky.  We quickly learned how to enter the information so that the system would give us the referrals that we knew would help clients.  One client told me that the only thing that really drove him bonkers about his wife having dementia was the physical task of having to change the sheets every day because she couldn’t remember to put absorbent briefs on at night.  He scored high on the physical tasks of being a care partner being the most burdensome so we started looking for someone who could come to do laundry a few times a week.

Another woman who cared for her husband who had Parkinson’s carefully told us all of the pieces of her situation that made her frustrated but mostly that she couldn’t see her friends at water aerobics anymore.  For her, the stress was related to the social side of things and giving up time to be with friends. As much as we talked about other supports, it was when we found someone to stay with her husband so she could go to the pool that she gained this piece of herself back which made all the difference in the world.  

With the woman who needed to be reminded of who she still is, her husband finds the emotional tasks like having to initiate conversations and hugs to be the most taxing.  He wonders how he’s going to be able to go on. I remind him that it takes courage to bring in someone like me when their relationship is being pushed to the max with loss after loss, that they both are feeling a little adrift at the moment and we need to find things to ground the emotional piece.  Some distant flickering sense of self is not giving up even though they both think they can go no further. I mention that it takes a significant amount of confidence to be frustrated with a situation and not ready to try something new but perhaps we could talk about ideas to make day-to-day challenges more bearable.  It comes to mind that these are ideas we all can use:

1.  Find the notes — you don’t need a whole symphony. As a supervisor once told me, sometimes we need to find and acknowledge between us the good bits of life, the little things that are sweet, the pieces we can like about what has changed.  When we feel like we’re starting from the lowest place, this is a more gentle way of reminding ourselves: what is one note or drop that is still good, that I still love about myself, about this person? We’re not talking about looking on the bright side, but giving our brains a chance to acknowledge what’s not lost for this does give us “fresh heart” to keep going.

2.  Don’t let yourself miss the party. We all do this.  We imagine that if that one thing (usually someone else) were different, we too would be a different person and be able to be happy.  And then we obsess about everything that’s missing and wrong, as if this could make it better. Think of it this way….you finally get to the day of a party which you’ve been planning forever.  All of your favorite people are there, your favorite food, your best playlist ever. Then you see a family member whom you really don’t like roll up. Who told her the party was today?! you think, and all of a sudden dealing with this uninvited guest becomes the whole focus….They are going to ruin the whole thing!  So you think through your options.  You can try locking the door but she’ll likely bang on it ‘til you notice her.  (Not a good way to enjoy your party.) You can hold the door shut for a while while she yells and tries to get in…but, guess what?….then you’re standing at the door while the party continues without you in the kitchen.  Finally you realize you have a third option which is to just let her in, acknowledge that she’s going to dominate the conversation sometimes, probably eat more than her fair share of snacks….but you’re not going to make her the center of attention and there’s no way in hell you’re going to let her be the reason you miss the party.  And guess what?! your friends don’t want you to miss the party either. Letting ourselves overthink what’s missing in our situations is missing our own party. 

3.  Update your owner’s manual of you. When we go through things that change our relationship with ourselves and others, it’s easy to feel incongruent with who we are on the inside.  Maybe we go through the motions but say things like, I just don’t know who I am anymore….For the client who felt lost because of early stage dementia, we needed to find a way to remind her of who she was, both as an individual and in coupledom with her husband.  We decided she needed to update to her personal owner’s manual and installed a bulletin board in the main living area. Then we enlisted all the help of those close to her to make lists and find pictures of anything that reminded us of her.  With help, she made a list of “Things I’m Really Good At” like deadheading the flowers, not leaving the stove on (a dig at her husband’s expectations of dementia) and (she said brightly) losing things! We listed “Important Themes in my Life” like trusting God and praying, always learning, and having a beautiful living space.  Part of her “owner’s manual” came to display her artwork after she took up coloring to calm her mind. The husband started leaving her notes to watch her read them even when she couldn’t remember to hug him anymore — a sweet moment he needed in order to feel connected still. The bulletin board became their little window into seeing all the unique pieces that made her her and them them, convincing me that everyone needs an owner’s manual like this.

In her book, Counting on Kindness, Wendy Lustbader beautifully describes the dynamics that go on when we lose pieces of our health and must depend on others to help us.  “Fresh heart” is what she calls it when we can focus on what is there now and how it balances what is not, even when it’s something we never wanted or hoped for.  And she rightly calls it courageous to see what is in front of us, saying, “The word courage comes from the Latin cor for heart.  We give ourselves fresh heart by pulling our attention away from what has been lost.”  

Finding ways to stay visible when our identity is shaken and remembering who we are, bit by bit…taking note of what is still there in a world that tends to hide any kind of loss — it’s making sure we don’t miss the party when the party is ourselves.

* * *

Western Care Partners guides families and individuals through the maze of resources and emotions that come with getting older or having a chronic condition.  We screen for services, facilitate decisions and provide counseling to support you through the difficult situation of needing more help. Call or send us an email for more information: 720-675-9902 or www.westerncarepartners.com.

©Western Care Partners, LLC 2020.  All rights reserved.


Does this Sandwich Generation Come with a Pickle? - Part 2

Continued from Part 1: In some cases, being invisible has tremendous benefits….[it] is like having a superpower…until you need to be seen, until you need your hard-earned knowledge and skills and expertise and grey hairs recognized….Invisibility is a wonderful thing — as long as we don’t lose sight of ourselves in the process.  

We forget that parts of us can become invisible but it’s happened to every one of us.  We forget because who we think we are changes especially when we’re called on to care for someone else or adjust to a new health situation.  It doesn’t mean those parts have disappeared but it can be easy for certain parts to become invisible to others. When we’re trying to adjust to a “new” self, it’s like trying to get our feet under us again and we simply can forget who we are….until you run face-first into this invisibility which I did rather recently.

When families are caring for someone who is living with a complicated medical situation, the supplies to care for that person are expensive.  Extremely. Ostomy supplies, special tubes and tape for ports, even incontinence products can rack up hundreds of dollars in out-of-pocket costs.  Some of these supplies are covered by insurance but if there’s a delay in coverage or approval, the family is often subjected to purchasing supplies privately.  Then a client’s situation can change which means that the supplies change… which leads to a surplus of supplies that cannot be returned. They’ve either been paid for by insurance or, often, the family has enough medical paperwork to manage without having to try to find a receipt and return four boxes of nitrile gloves, several bottles of senokot, pepto-bismol and a scale to Walgreens.  Which was how I ended up with 14 cases of vanilla-flavored nutritional formula — sustenance for people with a G-tube — in the back of my car.

Knowing that a case of this formula can run approximately $185, a family whose care situation had changed asked if I could find someone who would appreciate the extra cases they could no longer use.  Insurance could not take them back, and if they were bought outside of insurance, where the receipts were was anyone’s guess. So I agreed to find them a home, over $2600 of liquid nutrition. What I failed to realize was that agencies serving people who have a G-tube cannot accept this as a donation because it’s considered a prescription.  It wasn’t like an extra walker that I could just drop off at a medical equipment closet. This “prescription” clause knocked out about 90% of my ideas for how to donate the stuff. Then I realized I knew another family who cared for someone with a G-tube — puttin’ the pieces together!  I decided to call them up.

“Morning,” I said when they answered the phone, excited to tell them my big find.  “I know this is random but Michaela has a G-tube and you guys use the supplemental formula, right?…”

The mom confirmed that, yes, her daughter still used the formula, in fact the exact same brand — and it was very expensive.  

“Well, I was calling because I have 14 cases in the back of my car and I wondered if it was something you guys could use.”  I was thinking in my head (which I should know better than to do), this is going to make their DAY!

“Oh, that’s cool,” said the mom.  

“Do you want it?”

“Mmm….it’s vanilla-flavored?”

“Uh-huh.”

“Oh….well, that’s really nice of you but Michaela only likes banana creme….”

Now, unless you’ve known someone who eats through a G-tube where the formula goes straight into the stomach, you wouldn’t know that you also can taste food even if it bypasses your mouth.  It’s incredible. And! you wouldn’t know how expensive it is. And you definitely wouldn’t turn down 14 cases of the stuff because it was the wrong flavor. But you sure can do that and this mom did, in spite of both she and her daughter being on Medicaid.  

I ran face-first into invisibility and this is where I commend the mom.  When we experience a challenge, sometimes it’s easy for us to become invisible in terms of what we want or need.  Challenges run the gamut. It could be caring for someone who has memory loss and having to stay home more because that person can no longer leave.  It could be enduring the healing process after a surgery and needing someone to help you. Or it could be living on disability income with Medicaid providers coming into your home to care for you, including help with a G-tube.  All these things can make parts of you invisible, especially to others and, unfortunately, even to ourselves.  

Take being the care partner to someone with dementia.  You run the risk of becoming invisible to yourself if all of your energy goes into being the brains for two people — the cooking, the cleaning, keeping the person occupied with something that’s stimulating but setting them up for success with something they like to do….there’s just not enough brain to go around!  And at the same time, it takes cojones to stay connected to others and not lose yourself.  When it comes to healing after a surgery which can take way more time for our bodies than for our brains, others may think they can make up their own schedules of when they care for us.  The part of us waiting around for their help feels invisible, searching for the words to say this gives the impression that their time is more valuable than our own. Then try being low on the socioeconomic scale — the right to choose what you don’t want can definitely go unseen.  Unless you are not invisible to yourself and know enough to say what won’t work for you, like the mom did with the formula.  

It is so easy to lose ourselves by adjusting to what someone (or society) thinks we should do.  A dear friend calls it “shoulding” on yourself and makes a point to set up a “should-free” zone where she can calmly ask herself if she wants to be limited or limitless.  Because it’s choice that makes us human — that’s the pickle — whether someone agrees with what we choose or not. When we give ourselves choice, we stay visible.  

Next week: What does it take to stay visible to ourselves?

* * *

Western Care Partners guides families and individuals through the maze of resources and emotions that come with getting older or having a chronic condition.  We screen for services, facilitate decisions and provide counseling to support you through the difficult situation of needing more help. Call or send us an email for more information: 720-675-9902 or www.westerncarepartners.com.

©Western Care Partners, LLC 2020.  All rights reserved.


Does this Sandwich Generation Come with a Pickle? - Part 1

I don’t mind being touched when I’m taking a yoga class as long as the instructor asks first.  Generally, that’s how yoga rolls: early on in the class, the instructor asks you to raise a hand or a leg if you don’t want him or her to provide hands-on adjustments.  They take note, thank you and go on with the class, not touching if you don’t want to be touched. This is yogini best practice.

Occasionally, I go to yoga with my friend Mich.  She happens to also be one of the funniest people I know.  We used to go to a particular yoga studio and crack each other up before class.  Amidst other students taking their mat placement very seriously, she would whisper about how she’s going to invent mats the size of picnic blankets with a dotted line around the edge that says, “Personal Space”.  Or how we could tape two mats end-to-end to make one super long mat and then roll the entire thing out across the floor, pretending to be oblivious to the other students getting a little protective about their space.  

At one point, Mich had a favorite instructor.  We’ll call him Denver. She loved Denver because his sequences opened the hips and expanded the ribcage.  Denver shared insights about hindu deities and the history of the body. Mich felt refreshed and even inspired by his classes.  One night, she encouraged me to come to class with her. Mich can have a picky side soI thought, Denver must really know what he’s doing.

We rolled out our mats and sat down.  The class was full when Denver shut the door and plugged in his iPhone to play some soft music.  We exhaled, inhaled and joined our voices in a single Om.  Mich was right that Denver could move a class through a sequence that inspired you to hold beautiful poses longer and longer, poses where you put your hands on the mat and twist one leg up above your body.  Then suddenly, I felt someone grab my thigh and try to help me square my hips. Denver!?  I couldn’t believe it!  The cardinal rule of yoga instructors is that they ask before they adjust you….and Denver broke it.

There’s nothing worse than coming out of a yoga class pissed.  On the walk home, Mich talked about how great the class was while I was annoyed with not being asked before I was touched.  Besides, it wasn’t even that helpful of an adjustment.

“Hmm,” Mich said.  “He didn’t touch me.”  

Several weeks later I landed in another class with Mich, taught by Denver, only to have the same thing happen again.  At Mich’s suggestion, I even tried to follow her instructions on how to make myself unnoticed — something Mich had practiced.  Somehow you just put out the energy that you don’t want to be messed with. Mich told me she actually practiced going to parties and counted it as a success when no one remembered she was there.  I, on the other hand, get called onto the stage if there’s any kind of audience participation even if I don’t volunteer. I tried to put out an energy of I’m not here and Don’t touch me in the yoga class but nothing worked; in fact the harder I tried, the more adjustments I received.  Mostly I just came off as crabby to the other yoga students and I’m sure Denver thought, Boy, that woman really needs to be here!

— 

In the past few weeks, three women who are approximately 20 years older than me have told me that they feel invisible, that getting older had rendered them unseen in the world.  Their stories are similar in that they are dismissed after being noticed, usually with a hidden message that’s disrespectful.  

One of these women who has gorgeous grey hair and a strong, lithe body told me that she began to feel invisible when men her age started dropping the “young lady” line…as in, “Let me get that door for you, young lady”.  It’s empty flattery that is tiring to know how to respond to, and feels like men not seeing her as someone with a lifetime accumulation of knowledge and experience that she’s worked hard for. Instead the comments point to her age, minimizes it and leaves who she is invisible.  She doesn’t have the energy to point out that calling a gentleman her own age “young man” would easily be taken as disrespectful, sassy and out-of-line.  

Another woman mentioned that she doesn’t like to go to bars or restaurants because she either gets ignored when trying to order a drink or is given over-the-top special treatment that embarrasses her in front of other patrons.  She doesn’t feel seen as a human — as if her wrinkles and grey hair make it so that she is either too seen for what she is not and needs extra help, or not seen for who she actually is.

The risk is that this invisibility has an effect on the psyche of a whole population.  In this case, all three women are caring for their parents and juggling full-time jobs.  They’re in their prime income-earning years before retirement and also learning how to have friendships with their kids who are now adults.  If they don’t have biological family per se, they are often “logical” family to someone in their community. This population is educated, smart, dependable and trying to not lose themselves in the process of caring for so many others.  They are very aware that they need to hold very tightly onto their own inner beauty. It’s so all-consuming that you’d think this sandwich generation would at least come with a pickle.  

According to Dr. Gabor Maté, family physician and author of When the Body Says No, this caring combined with the belief that we’re invisible is a life- and health-altering combo, and not for the better.  One of the things they don’t teach in medical school, he shares in a talk about caregiver stress, is that who gets sick and who doesn’t is not accidental.  Based on his experience as a family doctor, Maté holds that suppressing our feelings, especially when caring for another person, can become a behavior pattern that leads to chronic stress and then to chronic illness.  Two components play into this. One: taking too much responsibility for how everyone around us feels and hiding our own needs.  And two: believing that we must never disappoint the people around us.  Just as the immune system serves to protect our body from disease, our emotions also serve to protect us — and stifling one affects the other.  

In some cases, being invisible has tremendous benefits.  Which superpower would you rather have?  Be able to fly or be invisible?  If you’re invisible, yoga instructors don’t randomly decide to adjust you in your poses without asking first.  Some of us can go to parties and not need to talk to anyone, a bonus if we’re having a bad day. Being invisible is like having a superpower until you need to be seen, until you need your hard-earned knowledge and skills and expertise and grey hairs recognized.  And then it’s hard to remove the veil and say, I’m here!  Yeah, me….I’m here doing all the things and I could use some support and recognition.  It sneaks up on us, the not being seen for all the work we think we’re doing to hold the world together.  Invisibility is a wonderful thing — as long as we don’t lose sight of ourselves in the process.  

To be continued….

* * *

Western Care Partners guides families and individuals through the maze of resources and emotions that come with getting older or having a chronic condition.  We screen for services, facilitate family conversations and provide counseling to support you through the difficult situation needing more help. Call or send us an email for more information: 720-675-9902 or www.westerncarepartners.com.

©Western Care Partners, LLC 2018.  All rights reserved.


How to Take Christmas into your Own Hands at 83

I’m not an expert on the subject of crows but it didn’t surprise me that Ty was.  Within five minutes of me coming through the door, he was already giving me the impression that, 1): he always told the truth and 2): there would be some very good stories during my time as his social worker.  It was early spring.

Ty offered me a chair and sat across from me on a little striped sofa from the 1950’s.  He was 83-years old and over six feet tall. He had the good looks of someone who loved his life and probably surprised himself when an old man appeared in the mirror.  

Dorrie, his tiny wife, sat primly in a wingback chair next to me, hands folded in her lap, nodding at everything Ty said.  She had heard all of his stories but I was a new visitor and so she conceded to listen again. Their modest farmhouse was situated on three acres surrounded by tulip fields which Ty described to Dorrie every day because she couldn’t see them anymore.  

Dorrie perpetually smiled even when she told me how her vision had slowly disappeared.  When she could only see shadows, she made Ty call around to see if they qualified for extra help in the house and eventually they found me.  I made a visit to help them piece together a plan.

I looked around their space.  Ty definitely did his best but I could tell housework wasn’t his jam.  The shortwave radio he’d built himself took up most of the kitchen table.  The windows could’ve used a wash and the living-room looked like someone had sprinkled a layer of sawdust on the floor.

Ty cut right to the chase and asked me what I needed to know, how long I’d been a social worker, and if I’d ever raised a crow.  Dorrie nodded and Ty grinned. I took my cue and asked him what he knew about crows.

To begin, Ty went back, way back, by letting me know that his great-grandfather had been banished from Massachusetts for bad language but not before they branded a letter “B” on his forehead. I asked Ty if he could move a little closer in history. According to Ty, his family ended up in Washington State when his great-grandfather joined the navy. Ty was one of those strapping young men who came of age during the Great Depression and found himself taking any job he could to make ends meet.  In the port of Bellingham, he landed a job on the tugboats with Bellingham Tug & Barge Company. Bellingham Tug & Barge sold to Foss in the late 1930’s.  At the time, Ty was a deckhand on the Tyee, “the most powerful tugboat in the United States”.  (This still didn’t explain the crow.)

In the days of logging, the Tyee shepherded gigantic log booms through Puget Sound for milling.  These booms — huge floating rafts of old-growth timber — float low in the water and were hard for other boats to see.  It was the job of the rear tugboat to keep a kerosene lamp lit on the end of the boom. It was Ty’s job. The tug would run close to the boom, Ty would jump down on the logs, relight the lamp and then scramble back to the tug.  Except for the night that he couldn’t. Puget Sound grew stormy and the tugboat couldn’t get close enough to pick Ty up again. He spent the night on a log and decided the boat business was not for him.  

For the rest of his life, Ty was a land surveyor.  He loved the outdoors. He surveyed for the oil industry back when you had to survey on foot through forests and plains, figuring out where it would be worth drilling for oil.  In most instances, his job was to drill holes, fill them with nitroglycerin and blow them up to see if there was potential for oil.  

Eventually Ty became allergic to nitroglycerin — which was ironic now that he was carrying small tablets of it in his pocket in the event that he had another heart attack.  Not ready to retire, Ty moved into teaching. Even in his 80s, he still taught at least one class every year at a local community college. This was one more reason they wanted to find someone to stay with Dorrie, to keep her company while he was gone.   

“Dear, the crow…” Dorrie interjected sweetly.  

Ty nodded and explained that the reason he was asking about crows was because one had recently pecked on their kitchen window and, they thought, it was probably related to the crow they’d hand-raised years ago.  As a surveyor, Ty had found a fledgling that fell out of the nest before it could fly. Not finding the nest, he gently put the bird in his pocket and carried it home.

With a little bottle-feeding and love, the crow eventually learned how to fly. The crow, however, associated the family as home.  He hung out on the porch and tapped the window whenever he got bored.  

Dorrie smoothed out her dress and smiled a little more.  Eventually the crow did leave, right around the holidays.  They figured that he’d started a family of his own. Crows, it turns out, mate for life.  

Then one day, the crow came back with his mate to tap on the window.  Dorrie brought bread out to the porch and the crows dined before flying off.  Now, years later, the “grand-crows” of the original pair still turned up on their porch and pecked on the window.  They were skittish around Dorrie and Ty but somehow instinctively knew that the couple would offer them bread.  

It was getting on in the hour and as much as I was enjoying their stories, I suggested we review the things they needed help with: someone to stay with Dorrie, help preparing meals, maybe housekeeping.  

“By the way,” I mentioned, pointing to the carpet.  “Why do you have sawdust on the floor?”

“Tell her, dear,” Dorrie grinned. 

Ty looked at her with a twinkle in his eye and said: “That’s from where I had to take the Christmas tree down.”

“You had to cut your Christmas tree down inside the house?”

“Uh-huh, with a chainsaw.”

I shook my head and Dorrie laughed quietly to herself.

“I overestimated how heavy it was!”  Ty pointed to the ceiling where an eye-hook was installed perfectly in the middle of the living-room.  “I couldn’t lift it so I ran some parachute cord through that eye-hook, tied it to the top of the tree and pulled it up to standing in a 5-gallon bucket.  Then I filled the bucket with qwikrete to hold it in place. It worked like a charm!”

I’m sure the whole family admired his ingenuity, however, when it came time to take the tree down, Ty wasn’t strong enough to move the whole tree and a 5-gallon bucket of concrete outside.  

“So….You cut your Christmas tree down with a chainsaw…” I said.

“Yeah,” Ty nodded and looked at Dorrie.  Smiling, he continued: “We could really use some help with the vacuuming….” 

* * *

Western Care Partners guides families and individuals through the maze of resources and emotions that come with getting older or having a chronic condition.  We screen for services, facilitate family conversations and provide counseling to support you through the difficult situation needing more help. Call or send us an email for more information: 720-675-9902 or www.westerncarepartners.com.

©Western Care Partners, LLC 2018.  All rights reserved.


Deciding About Having Tough Conversations During the Holidays (We Vote No)

If there’s one topic that can polarize a conversation, it’s the idea that we need to have direct heart-to-heart conversations about a loved one’s future over the holidays.  

. . . 

Here’s a little nugget of truth: I wrote that sentence two days ago and couldn’t think of anything else to write that would possibly be diplomatic or helpful.  After chewing on it for awhile, I think this topic is one to approach with the mindset of how can we make something hard a little bit easier. How can we let holidays — this time of year and other times too — be a celebration?  

You may have heard some rumblings on the interwebs or even overheard strangers talking about how kids and parents need to have certain conversations sooner than later…Conversations about what you want toward and after the end of your life, where the important paperwork is located, who will make decisions if you can’t, and et cetera.  You can download questions, visit websites with conversation starters, even buy workbooks that walk you through the five wishes straight on ‘til morning. As a dear friend and advocate once told me, all of us need to get our affairs in order.  I am one-hundred percent behind the idea that these conversations need to happen.  

Now, there are two camps on the topic of whether or not to initiate family decision-making and tough conversations over the holidays.  For some of us, the inner compass needle points straight at we’re all together so let’s talk about this stuff now.  And for others, the obvious is why the heck would you bring up such a heavy subject over the holidays?  We could spend days analyzing how personality types, birth order and family history all play into this.  What I see is that the holidays are a time when some families get together physically but the main worry is how they’re going to connect emotionally.  And to be honest, it is really hard for families to make decisions together when holidays are involved and emotions are naturally heightened.   

In light of many of us really wanting to do good by way of our families, here are some ideas to keep in mind for whatever holidays you celebrate:

  1. Avoid Turning Holidays into Emotional Holidays

When I was working in hospice, the daughter of one of my clients had had numerous significant losses in the month of February.  It was tragic really. She’d gone through a divorce in February, she’d once been assaulted in February, she’d had major surgery and the list went on and on.  Now her father was dying, she’d lost her job and guess which month it was? February. It was no wonder that she dreaded February every single year.  

In grief counseling, we’d say this woman had a lot of emotional holidays in February.  An emotional holiday can be a day or even a time of year when you (and your body) experience something strongly emotional because of a past experience.  Usually we’re talking about loss whether it’s the day someone died or the birthday of someone we love who is no longer there. Have you ever woken up on a certain day, in a certain fog or funk but you weren’t sure why?  And then later you realize it was the anniversary of someone dying whom you loved? This is the phenomenon of the emotional holiday — that our minds and bodies can associate memories with certain times of the year, down to the day, and feel those emotions that were felt when the memory was made.  Emotional holidays can correspond with actual holidays too.  

How do emotional holidays get easier?  By accumulating positive experiences AKA celebration, connection and good food.  Maybe take some time to read the room and check in with people. Will insisting on having a difficult conversation (even if it’s loooong overdue) create an emotional holiday?  Will it lead people to avoid tough conversations with you in the future? Maybe a better option would be to plant the seed of hey, I want to have this conversation with you not-right-now but sometime.  

  1. Palliative Care for your Emotions

When you have a chronic condition that will stay with you for the rest of your life, you can qualify for palliative care.  Palliative care focuses on comfort and treating the symptoms when a disease cannot be cured. As a patient, you direct your own care with the main goal not being to “fix” the disease but to get on as best as possible with what is.  Palliative care is very holistic in that practitioners consider your situation from all different lenses: physical, psychological, social and spiritual.  Palliative care is you not trying to change what is and instead taking the best care possible of you.

This is the same kind of approach we need for our emotions over the holidays.  So often we try to “fix” our emotions or “fix” the emotions of family around us.  We fall into old patterns and ways of being around our siblings that we would never be with our friends in the outside world.  This, in turn, also fails to give our families the opportunity to know who we really are at this moment in time.  

A friend of mine was riding in my car once.  She said something I was curious about early in the drive.  It seemed like something important but when I asked her about it a few minutes later, she said it wasn’t important and she didn’t want to talk about it.  I was a little miffed but had to laugh when she replied, “That was five minutes ago. I’ve changed.” It was FIVE MINUTES (that’s what I thought in my head).  But she was right — people change.  

Sometimes we don’t expect our families to change.  We have preconceived notions going into the holidays that we are going to have the same emotions and same reactions that we’ve had every single time we’ve gotten together.  It’s an emotional holiday, after all. Someone is going to set us off (our brother is going to make fun of us for being a feminist), push our buttons (our sister is going to insist on some tradition we didn’t remember existed) and we’re going to end up with an emotional hangover (and in therapy).  

But what if we took a palliative care approach to our emotions over the holidays?  What if instead of trying to manage our emotions (“fix” them) and getting frustrated with not having the conversations we KNOW need to happen, we just acknowledged that we’re feeling scared about where things could land or sad that we feel disconnected?  What if, instead of trying to make every holiday perfect, we decided to make our emotions comfortable? Frustration, we could say, I’m making you a little bed right next to mine because I know you are as overwhelmed as I am.  Or maybe, I’m sad that I’m realizing there are things I don’t know about my family….gonna honor that and maybe see if I have enough energy to ask more questions.  Maybe our emotions deserve a little palliative care, especially this time of the year.

  1. Calm Down, Drink Some Water

When I was little and woke up in the middle of the night, it seemed very distressing at the time!  Of course, I decided that I should obviously wake my mom up too.  Her response? Go to the bathroom, get yourself a drink of water and go back to bed.  But I couldn’t sleep!  Did you drink some water?  No.  Have a drink of water and I’m sure you’ll go back to sleep.  It worked every time.  (Thanks Mom.)

In stressful outdoor situations, we have the same motto.  Are you lost, frustrated, exhausted and not sure what to do next?  Here comes the refrain: Calm down, drink some water.  

Now it’s the holidays for some of us.  We’re back with family. We can’t sleep because of something a family member said.  We miss our friends. We are out of our element even though it is the environment we grew up in.  I’m projecting, but how many of us forget to cut ourselves some slack during family holidays? Research shows that breathing through our noses decreases anxiety.  Oxygen dissipates the adrenaline in our blood stream and calms us. Drinking water makes us both breathe through our noses and hydrates us. PS — being hydrated actually decreases symptoms of depression.  It may seem simple but perhaps a tool we forget over the holidays is to calm down, drink some water.

* * *

I once had a woman say to me, I just told my family, “You’re all coming to my house on Thanksgiving and we’re all going to fill out our Power of Attorney forms.”  I was stunned and asked her how that went over.  Just fine, she said.  I’m an attorney and they know they have to listen to me.  

Okay, so we’re not all in that position and, truth be told, taking on a big topic like end-of-life wishes or the chance that we’ll all need a certain amount of physical help someday is a delicate subject.  With a certain amount of tact, yes, these conversations can take place around the holidays but goodness knows, not everyone responds well to being told they have to talk about something deeply personal before they’re ready to.  And perhaps accumulating positive experiences may lead to better conversations in the long run.  

Maybe it’s my line of work but it seems like there were a lot of people who thought 2019 was already hard enough: We’ll just be glad when it’s 2020, they said. This year was a challenge.  In that case, give yourself permission to be kind to yourself, respect the emotional holidays, give your feelings some palliative care and for goodness sakes, calm down and drink some water.   

* * *

Western Care Partners guides families and individuals through the maze of resources and emotions that come with getting older or having a chronic condition.  We screen for services, facilitate family conversations and provide counseling to support you through the difficult situation needing more help. Call or send us an email for more information: 720-675-9902 or www.westerncarepartners.com.

©Western Care Partners, LLC 2018.  All rights reserved.


Stick it to the Man

It was the best of times, it was the hardest of times. My friend was turning 60 and her business, her friends and all her kids were in a stable place. It was pure joy to get together and celebrate her birthday, celebrate her life. To boot, she was also one of those people who could build social capital with a very talented group of friends and actually took the time to pull from that bank when needed. But like I said, it was the best of times, and it was the hardest of times.

My friend’s dad had dementia and she lived with him full-time. In one creative problem-solving session, we’d figured out how to hire social work students to stay with him so she could have an evening to herself. It was like babysitting but in reverse. Their role? To enjoy his company, which meant that he was enjoying himself, which meant that — as a daughter — my friend was doing everything reasonably possible that she could do.

Dementia is one of those strange things that those of us with healthy brains feel like we should be able to reason with; that we feel like we should be able to wrap our heads around — and, of course, get the person with the memory loss to wrap their mind around with us.

Long ago, I heard a statistic that 50% of people with dementia will never know they have it. That means 50% will know something is wrong. These are the ones who grieve the diagnosis. They know that something is amiss or it runs in their family or they will see the reaction on their partner’s face and know they just asked the same frustrating question for the umpteenth time. They are hard on themselves, trying to help their family and continue in their role but finding themselves wandering around the house, moving things around (often interpreted as “losing things”), and trying to make their brains comfortable. There is a huge opportunity for counseling and support when this is the situation.

Then there are the other 50% — and trust me that this is not so clear — but they are the ones who do not see anything wrong with their memory. They logically try to make sense of why the world is so disorienting and often do so like a bull in a china shop. In my estimation, this is the group that makes sense of a bizarre reality they don’t remember causing by making up a story to fit. They explain finding books in the refrigerator by blaming it on someone else. Here is the potential thought pattern: There’s no way I would leave a book in the fridge, for crying out loud — so my son/neighbor/caregiver obviously did it….I knew he was out to get me. To the point where certain stories, especially when combined with paranoia, become outlandish and loved ones can spend all of their time managing the person’s distress. The brain makes up a story to explain the obvious visual evidence but the memory to capture the situation is impaired. The caregiver who was trusted for so long has now “stolen” all the jewelry which is somehow thankfully found in the trashcan and placed in safe-keeping but now that it’s “missing”, the caregiver is not trustworthy. God bless the caregivers.

Such had been the case with my friend who was living with her father, making sure he was enjoying life, staying busy, going to bible study, chatting with the social work students about the same thing day after day but they-loved-him-because-he-was-sweet. She knew better than to let everything lovely in her own life go. She found support and strength and was fortunate that, besides getting himself worked up about not being late for bible study when his personal clock was off (AKA 4am), he was really-truly-for-the-most-part safe. I admired this as I found him in a room by himself at her birthday party.

“You’re the dad, aren’t you?” I said and shook his hand. He was smiling and I saw him holding her blank birthday card. It was the best of times, it was the hardest of times. He couldn’t figure out what to do with the card so I suggested we write a message ourselves. He picked the words; I kept him on task.

We put the card in the envelope and left it on the gift table before we rejoined the party. I have a distinct memory of him being proud about mastering the situation. This is the card for my daughter. Nailed it. It goes on the table with the other gifts. Who had gotten him that card? We will never know. For that moment, it was the best of times.

Months went by and the daughter, my friend, came back into my life. Some things had changed — most notably, she had a timeline for moving out (AKA back into her own home). We were talking about what things could be put in place to help her dad stay in his home — his wish — for as long as possible. We talked about finding a graduate student who would be willing to live with him — free room and board in exchange for overnight support.

Overnight stuff, I will say, is the biggest challenge for most families. Sometimes when you have memory loss, your circadian rhythm gets messed up and you are up at all hours of the night. If you think you’ve lived through sleep deprivation because of the birth of your child, try living with someone with dementia. It’s hard on those of us with nine-to-fivers.

My friend told me that it was at least a little easier when he could stay busy doing things that he thought were helpful, things to keep himself occupied. What kind of things?

“At first, he handled the mail,” she told me. There was a pause and she remembered. “He would open ALL of the junk mail, every single envelope, like it was important stuff. Stacks of it, like it was his job. He would spread all of it out on the kitchen table to organize it. You wouldn’t believe what stuff they send…Publisher’s Clearing House…erectile dysfunction…”

I could certainly validate the immense amount of junk mail that he was receiving. Of all the mail to be worried about, junk mail was my nemesis. I have worked with clients who have been scammed out of thousands of dollars through junk mail but that’s another story.

“He could spend hours going through it…it was his job. Something to keep him busy. And you know the best part?” she laughed to herself. “The next thing he’d do was fill all of the prepaid envelopes and send them off. But he couldn’t match the envelope to what was supposed to go in it …so he’d put the erectile dysfunction propaganda in the Publisher’s Clearing House envelopes. Or send hemorrhoid cream ads to charities looking for donations. Imagine these places getting envelopes full of their own junk!”

I couldn’t stop laughing…

“And! Get this,” she continued. “With Dad sending the wrong things back to these places, they actually started sending him less junk mail! Maybe they keep track of who sends them things? It definitely slowed down.”

Could there be a better solution to junk mail?! How perfect to send their own paraphernalia back to them? What if adult day programs took this project on as an activity that keeps people feeling productive, possibly making a difference and at least bringing a smile?

I ask my friend, if she’s missing this stage, why he had to stop this fun activity.

“Well,” she tells me. “He somehow mailed a whole book of stamps somewhere and I got to be a little worried that other things were going to go missing — but up until then, it kept him very busy!”

* * *

Like many people who have memory loss, my friend’s dad continues to be a source of light and frustration in the many solutions he finds to make his brain comfortable. I’ve known spouses whose husbands spent hours washing rocks in the driveway or folding laundry — whatever it is that allows for the feeling of being productive and enjoyed for our work. We are, after all, adults with an accumulation of life experiences and it takes creativity to ensure that people still feel like their lives have a purpose even when there is a diagnosis of cognitive impairment. And, let’s not forget…if it took the brain of someone with dementia to accidentally find a solution for junk mail, maybe we need to be open to other accidental solutions in the work people are still able to do.

* * *

Western Care Partners guides families through the process of accessing resources and services, facilitating family conversations, and supporting the entire family through the difficult situation of someone needing more help. Call or send us an email for more information: 720-675-9902 or www.westerncarepartners.com.

©Western Care Partners, LLC 2019. All rights reserved.


Debris hut made by students

Not Naked but Definitely Afraid: Why You Should Take a Survival Class

Debris hut made by students
Debris hut made by students

Most years, my travel includes heading back to the Pacific Northwest to teach for Washington Outdoor Women.  It’s a break from the ordinary: sleep outside (this year in a teepee complete with healthy mouse population) and engage women in learning the tangible skills they need to be confident in the outdoors (teach them survival basics).  And — this year — instead of asking everyone what they have on them to use if stuck in the backcountry, I ask: “What worries you most about survival? About getting stuck overnight or longer somewhere?” The 14 women are instantly forthcoming:

I worry about what if I get hurt and someone doesn’t start looking for me soon enough.

I don’t know what to do to keep my kids safe if something happens.

I hate that panicky feeling when I get scared that I can’t find my way back.

I pull out a well-worn copy of Bernard Shanks’ Wilderness Survival and we discuss the psychology around what it takes to survive.  Self-esteem.  Staying calm. Tenacity.  The ability to express emotions.  Being prepared. Having a Plan B. Making decisions with another person or group.  

I never thought about this but basic survival skills do not change much from year to year: if you can’t make it back before dark, your first priority is shelter.  If you can’t make it back the next day, your next priority is water.  After that, it’s fire.  And finally look for food.  Get out of the elements and make sure you have a way to signal for help.  Carry your 10 Essentials…let someone know where you are going…learn to read a topo map and use a compass…check the weather, strategize your next move and don’t get more lost.  Even back to when I took Backpacking & Survival in high school (Thanks Mr. Biddle), the basics of managing in a survival situation haven’t changed.

When I’ve taught this class in the past, the students often digress about apocalyptic events, plane crashes in the Andes and popular shows like Naked & Afraid.  This year, however, most of the women want to know what to do with being scared.  They are taking more notes on the psychology around survival rather than the skills.  They talk about confidence and self-esteem. Viktor Frankl’s book Man’s Search for Meaning comes up and the idea that a survival situation could lead us to ask what does this all mean?  The physical act of keeping yourself alive, however, is about another question: What is life asking of me?

I read to them an experiment cited by Shanks.  Several scientific-types were selected for a study on how well they would do on a strenuous trek through the Alaskan wilderness.  They had all different body types. Shanks notes that all participants were initially more concerned about their physical prowess than mental stamina because, in their minds, being strong would allow them to push through anything.  Reality, however, played out differently. The study found that those who were able to complain and express insecurities fared by far the best.  The students latch on to the idea of being told it’s okay to emote.  Those who weren’t in as good of shape showed higher spirits as the days wore on because they saw that they could handle themselves well when the going-got-tough.  A few of the students sit up a little straighter.  The story buoys the women who aren’t as confident in their skills or their bodies.

Continuing on, we talk about how everyone goes through a range of emotions when our plans change and we have to get ourselves out of a mess.  Some emotions that we don’t really enjoy could be red flags that an environmental injury that needs to be addressed. People get crabby and irritable when they’re cold and wet (hypothermia).  Depression can be a symptom of dehydration. Apathy is always a red flag that an injury could be moving from moderate to severe. What about denial? I ask. Is it actually a feeling you know you’re feeling?  The class jokes because no one says, Hmm, I think I’m in denial about this really hard situation.  But denial might actually be felt as it is — as a form of hope and something that could be preservationary to our very existence.

I explain to the students that these situations, skills and emotions are not dissimilar to the ones I work on with families who are in crisis when they suddenly find out they or a loved one needs extra help in managing the changes that come with getting older or having a disability.  While families are not in the backcountry, these events can seriously knock us off our feet. Chronological injuries they could maybe be called — the ones that come about due to being farther along in our lifecycle.  And outside of, well, sleeping outside, many of the skills it takes to navigate our next move within the context of family dynamics are similar to those required in a survival situation.

For example, there are the things you can do before you’re in a crisis.  In survival classes, we talk about letting someone know where you’re going, how long you will be gone and who to call if you don’t come back.  In my practice, I often talk with family members who are solo-caring for someone else. No one else in the family has any idea of the stress that they are bearing by managing a second household on their own.  Amazingly, there are those of us who don’t tell even our closest friends about significant changes in health or a new diagnosis. It’s a whole different journey than losing the trail but if no one knows you’re on it, how are they going to know to come look for you?  To call and find out how you’re doing? To reach out for backup if you need it?

That said, how do we know if we’re in crisis or survival mode?  Have you ever had a friend who suddenly becomes entirely frustrating because they interrupt you all the time? or correct every little thing you say? Or maybe you just don’t hear from them and suddenly wonder where they’ve gone.

When we’re not at our best because of stress or fear or physical pain, we go into coping mode, whether we are in the backcountry or not.  We snap, we isolate (believing no one wants to be around us when we’re hurting) and we fixate on very stupid details (like how to load the dishwasher).  It could happen in any situation: maybe it’s finding out you have to have surgery due to degeneration in a joint. Maybe there’s something your family didn’t tell you and you wish you could’ve known (and helped) sooner.  Maybe you suddenly feel corrected every time you open your mouth talking with your best friend and think, “Geez, they’re annoying….how didn’t I notice that before?” In this very place, we are not operating at our best or most compassionate selves. But is it her?  Or could we both have thin bandwidth right now?  Hmmm.

And maybe, just maybe, you find out down the road that someone’s husband lost his job or their parent was diagnosed with heart failure.  Maybe you get a cortisone shot that suddenly takes your own pain away and you wonder why you had those mud-colored glasses on the whole time.  Sigh, survival.

Occasionally we’re lucky enough to step back and receive magic wand-tap-bing! of grace for each other.  Occasionally we can see that everyone is doing the best they can. And maybe, we realize — when we can step back — everyone is really just trying to survive.

* * *

As our four hours wrap up, the students in my survival skills class fervently search for dry tinder materials in the rain.  Some of them huddle in pairs under a tarp we strung — slip knot, slip knot, half-hitch. They shave magnesium flecks onto little bundles of all manner of fire-starter: cotton-balls and petroleum jelly, Fritos and antibacterial ointment, pine needles, bark and chapstick.  You hear shhhhhkk! shhhhhhk! shhhhhkk! as they swipe their knives down the flints to create a spark.  Adjust the tinder just so, hmm.  Then loud cheers go up as each little pile finally catches and we have flames!  Yeah baby!

Several students begin talking about what they learned, that it’s harder to start a fire with a flint than they thought….but fun.  They comment on how they can spend the night in the backcountry now, and build a shelter.  One woman is particularly confident after realizing that she could wrap herself in a space blanket with her back to a large tree for the night because that would make her feel safe!  Her shelter-building partner had other ideas for a more elaborate hut but she didn’t care.  The class gave her the chutzpah to stand up for herself.  Not me!  I’d sleep right next to this tree.  Students affirm her plan: You have to do what’s best for you.

I didn’t say it at the time but this student’s resistance to following what the group is trying is a sign of confidence.  It’s easy to give someone all the information, weigh all the options and expect them exactly what I taught.  That’d be holding onto an outcome though…it would attaching my role as teacher to what seems “good” or “right” or “safe”.  But what we really want is for people to decide for themselves; be critical thinkers. Whether in a backcountry situation or within a family — we may not agree with what someone decides but it does show confidence, a key piece of what it takes to survive.

I ask the class one final thing: how do we build self-esteem?  By doing these kinds of things, they tell me.  Exactly. By learning and doing things we view as esteem-able.  By gathering the information that is useful to the very essence of who we are.  

To close, we circle back to the survival attitudes we covered in the beginning of class: stay calm, face reality; take stock of the situation; believe in yourself; be decisive and take one thing at a time.  Be curious and see the beauty in survival situations.

We talk about the sense of play they felt in building shelters; the empowerment they now have with these skills; and how survival brings us all the way back to the richness and beauty of being alive and connection with the life-force inside of us.

It’s quiet with the 15 of us thinking or maybe everyone is just hungry.  I wrap up with a quote from Laurence Gonzales, author of Deep Survival.  Somehow, it relates to so many situations in life: “A survival experience is an incomparable gift: it will tell you who you really are.”

* * *

Western Care Partners guides families through the process of accessing resources and services, facilitating family conversations, and supporting the entire family through the difficult situation of someone needing more help.  Call or send us an email for more information: 720-675-9902 or www.westerncarepartners.com.

©Western Care Partners, LLC 2019.  All rights reserved.


Things I Learned from People who Talk with Their Hands

Ironically, of all the places where it’s useless to talk with your hands, talking with someone who’s deaf never made it on my list.  Until this.

It was my day to answer the phone in our area agency on aging office.

“This is a TTY relay operator.  You are receiving an incoming call from…[pause]….Matt,” a voice told me.  “I will be typing your response to him.”

Matt, it turned out, was deaf and in his forties.  I didn’t know this at the time but “TTY” stands for “Text Telephone” — which existed before the age of texting.  Matt told me through the operator that something was wrong with the power at his house. The lights kept dimming or “browning out”.  He and his girlfriend had had an electrician over to look at things but, being deaf, something was lost in communicating the problem and the electrician never fixed it.  The refrigerator was not able to keep food cold and Matt said they couldn’t afford to keep replacing the groceries that spoiled.

Our information and assistance phone line had recently begun to serve adults with disabilities under the age of 60.  The expansiveness of this realm would take several years to become apparent. Where age typified the older people on our caseload and determined what services they were eligible for, in the disability community, disease or diagnosis determined eligibility — and not every disability had an organization that offered resources.

Rather than receiving benefits because you reached a certain age (AKA Medicare), those between the ages of 18 and “older” only received benefits based on need (like Medicaid) or because they fell into a group that could provide services based on impairment.  As we discovered, stuff you could get if you had vision loss was different than stuff you could get if you had cancer. This led to a creative attempt on the part of providers and clients to piece together services when basic needs needed to be met. Unlikely situations were par for the course.

Matt continued on that he felt sure the problem was where the power came into the house, not the wiring itself.  I, on the other hand, awkwardly talked over him and received a reprimand from the operator to wait each time I spoke.  I decided it would be easier to see what services I could pull together and head over. Matt gave me his address and phone number.  His girlfriend, he told me, could hear a little bit in her left ear if I yelled so that would be how we could communicate. I told him I’d see him soon.

My go-to for things I couldn’t fix was Joseph, the coordinator of our local volunteer program.  He wasn’t afraid of creative solutions, loved weiner dogs and had once raised an orphan crow as a pet.  If there was something we could piece together, Joseph wasn’t afraid to try. I explained Matt’s power situation and Joseph had one idea.

“Well, I actually do have a volunteer who used to be an electrician,” Joseph told me.  Matt wasn’t over the age of 60 so technically Joseph couldn’t send the volunteer out under the official volunteer program…but he’d see if the volunteer might spare some personal time to take a look.

“There’s just one thing about him,” Joseph hesitated.

“What’s that?” I had already offered to accompany the volunteer whenever he was available.

“He’s pretty hard of hearing.”

Tom the Electrician was game to save the day or at least take a look at Matt’s electrical situation.  I gave him the address and scheduled a visit for Thursday.

Driving to Matt’s house, I realized I was getting closer and closer to the train tracks.  So close, in fact, that the gravel driveway where I parked was also an access point for the railroad company to reach the tracks.  Tom pulls up, grabs his tool-belt and we ring a doorbell that doesn’t seem to work. I knock hard on the door, wondering how Matt will hear us.  What sounds like a pack of wild dogs erupts inside. Matt opens the door and lets us in. His mutt-dog, Tigger, jumps on our legs and Matt’s girlfriend smiles up from where she’s kneeling next to a whelping pen holding five half-grown chihuahua puppies and their mom.  What could be a better doorbell when you’re deaf?  I think.  And who else could handle the noise of so many dogs?

I am about to shake Matt’s hand when something causes the dogs to erupt into barking again.  I cover my ears and stare at Matt. He and his girlfriend laugh and shrug. Tom the Electrician also shrugs.  What are you doing being so sensitive? I feel like they’re saying.

Tom shouts loudly into the girlfriend’s left ear that they should show him where they think the problem is.  The girlfriend signs to Matt, he signs back to her and they motion Tom over to the refrigerator. Pulling it away from the wall, Tom does something to test the outlet.  He gives a thumbs up, tests another socket, more thumbs up. Matt, however, shakes his head and signs to the girlfriend.

“Too weak, too weak. They were brighter.” she says, translating what Matt had signed and pointing to the overhead light. She nods at me, “He’s right, they really were.”

Tom checks the outlets in the bedroom and the hallway.  He says he can’t find any problems shaking his head to Matt and then gestures that they should go outside.  Matt takes us to the side of the house where the power lines come into the box. Tom opens the box and the train tracks start zinging behind us.  A train is coming. Just as I’m about to say something, a huge engine pulling probably 50 cars of coal blows its whistle. I’m drowned out. Matt and Tom barely notice and continue on with their inspection.  The girlfriend looks at me, smiles and shrugs.

They say that only 30 percent of English is visible on the face but that people who are deaf can pick up on nonverbal cues to the point where it’s impossible to hide your thoughts.  Instead, if there’s something you don’t want to say, you have to redirect and quickly think of something else. It’s like riding a bike where, if you look at the rock in the path, you’ll hit it.  If you have any judgment about the house smelling, look out the window instead of at the dirty sheets. Given this, I knew that I couldn’t hide the fact that I was frustrated with all the noise and my timing being off for when it was my turn to talk.  It’s easy to interrupt someone who is signing because those of us who are hearing-abled have a gut instinct to think it’s our turn to talk when there’s silence.

As the train rumbled by, I knew my cover was blown — I was the one who had coordinated this meeting and I was having the hardest time with communicating.  I tried once more to shout something and the girlfriend leaned over so her left ear was close to me. She still didn’t hear me. Then Tom notices that I’m trying to say something so he leans over but the train drowns out my voice.  I try to pick up where we left off once again but I’m lost. Tom and Matt are on the same page; Matt and his girlfriend who can sign are on the same page. I’m not. It doesn’t matter. I give an exasperated shrug. Matt signs something, looks at the girlfriend, then at Tom who nods.  They all just look at me, smile and shrug back.

* * *

Western Care Partners guides families who are struggling to figure out options for someone who’s getting older or who want to know how to plan for themselves.  We explain resources and services, facilitate family conversations and support you through the difficult situation of someone needing more help. Call or send us an email for more information: 720-675-9902 or www.westerncarepartners.com.

©Western Care Partners, LLC 2019.  All rights reserved.