Gracious and accommodating

This is the second post in a series on hospitality–one of my favorite topics. Today I’m continuing with thoughts from the workshop I hosted/facilitated last fall.

Hospitality has become an old, tired, worn out word. (When I made this statement several women nodded their heads in enthusiastic agreement.) Co-opted by the hotel/motel/restaurant industry the term now belongs almost exclusively to profit making machines, educational programs, and customers. And on the home front hospitality has largely given way to the idea of entertaining rather than generous and kind invitation to be together. While there is completely valid space for the “hospitality industry” and “entertaining” the concept and practice of welcoming people into home and personal space has not kept up–at least not in ways that are readily visible to many people. You don’t have to look far to find all kinds of reports and studies about the high levels of loneliness and isolation in our culture today, some of which could certainly be alleviated by either inviting, or being invited to join in around a table. And on that note we started our conversation.

My story of how I came to understand the meaning of hospitality.

My early years were spent mostly in the company of my grandparents. And like most grandparents of the day they spoke the language of a different era. Their speech was much more formal and their words were often big, and important sounding. My grandmother had been an educator and so was dedicated to teaching me to speak well, which of course required a large working vocabulary. I picked up many of their words simply by listening to them talk together, the context usually being crystal clear because of the experiences we shared together.

John and Beth, like most deeply bonded couples, finished sentences and thoughts for one another. They enjoyed a good turn of phrase and occasional word play, but most of the time they spoke clearly and with sincere feeling. One of the first phrases I learned from them was about hospitality.

We had just bundled into our “wraps” and were settling into the car for the ride home after having coffee and dessert in the home of some friends and their talk locked these words in my mind, becoming part of my permanent vocabulary:

Granddad: My, but they were hospitable. Grandma: Yes, so gracious and accommodating.

It could have been either one of them starting this bit of conversation that I heard many times throughout the years but the outcome was always the same–one started, the other one finished. Someone being hospitable was a kind, warm-hearted and generous act that we enjoyed and appreciated, and the easy welcoming of us into their home and world was called, “gracious and accommodating”. Even at four years old I understood this.

Taking a closer look at these beautiful words:

Being hospitable conveys the thought of being generous and open-handed in receiving guests. It shows a spirit of generosity that has nothing to do with how much money a person has, or how big their home is.

Graciousness is all about being sincerely kind, courteous, and pleasant. Compassion and mercy also play into this way of being.

Accommodation signifies the willingness to adapt or fit in with someone’s needs or wishes. To cooperate, assist, and serve.

Hospitality + Graciousness + Accommodation. In other words, moving in a spirit of generosity to kindly and sincerely make room for other people in our lives. This is a highly creative path that allows the giver and the recipient to flourish and grow.

It is true that hospitality is a mind set that allows us to accommodate people in a wide variety of circumstances, but in this case we’re talking about it mostly in the context of making space at our tables to share our lives we, to fill stomachs with food, and hearts and minds with acceptance and care.

In the next post I’ll write about some of the ideas and experiences shared by the workshop participants.

Sharing the table

This is the first in a series of posts on one of my favorite topics. There is always adventure and risk involved in practicing hospitality and here you’ll get to read about some of my experiences and thoughts on the subject

Last fall I collaborated with a team member to organize and facilitate a women’s workshop at our church.* We extended an open invitation to our women and any friends or acquaintances they might want to invite, the theme was hospitality and our title, “What’s for Dinner: loving people and life through the food we cook and the tables we share.” We had a great time, both in planning and prepping and in carrying out the vision with a wonderful mix of guests, aged from 12 to 76–all of whom came ready to participate, and to enjoy being together.

We talked about what hospitality means in this time and what it doesn’t mean. We worked through our prepared questions which resulted in a full participation discussion about our experiences, our anxieties, and our successes, some of which were very surprising. And we talked about new and/or different ways to bring people to the table. The discussions were honest, enlightening, inspiring, and most of all, very encouraging. The talk continued during lunch and we could see the conversations and ideas hopping from table to table with everyone occasionally stopping to connect in one discussion across the room.

Each person went home with instructions and zippered plastic bags filled with the beautiful components of a sheet pan dinner, except for the protein they might want to add before popping it in the oven. We offered 10 different kinds of colorful cut-up vegetables, olive oil, and a variety of seasonings. There were combination suggestions posted along the wall to take some of the mystery out of what could have been an overwhelming situation. Dinner for everyone in no time at all–it was meant to be a fun activity but also to serve as inspiration for a quick, inexpensive option that almost anyone can serve with very little notice.

At the end of the day the returned evaluation forms told the true story. The women greatly appreciated having dinner to take home especially something most of them hadn’t tried before, but the most valued part was the authentic sharing between the generations and levels of experience. It was a game changer.

Here’s the big take away from our workshop:

• Hospitality is a mind set.
• Hospitality grows from a spirit of generosity and a willingness to make space for other people–where ever you are.
• Hospitality requires some risk and some work (see above).
• Genuinely practiced, hospitality makes stronger families, stronger personal communities, stronger churches, and a stronger community at large, which is hugely important in these very unsettled times.
• The table will always be one of your best tools for making and sustaining relationships, and for hearing from people who may have different thoughts and ideas than you.

*We in no way think that the heart and work of practicing hospitality is for women only, but in this case we were asked to plan an event specifically for women and we chose this topic for this time.

An unanswerable question

Friends and acquaintances often ask me about my mother, wondering how she’s doing, or if she’s finally getting better… better enough to go back home. I have to adjust the answer to the first question to fit the circumstances. A change in medication brought about good changes for her and cut the cord on the never ending cycle of agitation, so yes, she’s doing better. But is she going to get better? After repeating my explanation numerous times over the last three years I’ve finally become blunt and give an answer that stops some in their tracks. I smile and simply say, “She not going to get better. She has Alzheimer’s and the disease is killing her.” A few people react as if I’d slapped them, but maybe they were embarrassed or ashamed for not having listened to me all the times they’d asked the same question.

Some will ask if she still recognizes me. I tell them that sometimes she recognizes me and is happy to see me, sometimes she doesn’t know me but is still happy to have my company, and other times she doesn’t recognize me and is afraid of me. The response that follows is always the same. “It must be so hard when she doesn’t know who you are.” Actually, it isn’t, there have been many worse things. We know that this is a natural progression of the disease and is to be expected. It’s not a happy thing, but it is a known thing–it’s not a surprise.

The surprises come when my mother talks to me, when I get a glimpse into the workings of a mind that’s fading away. She is/was a very bright, well-educated, well-accomplished woman. Her 87 years have been filled with a wondrous array of experiences and enough pain and heartache to sink a ship. Just like any other human being she didn’t always react well to life’s challenges but in the grand scheme of things she has had a remarkable life.

When I visited with her yesterday our conversation would have seemed very, very strange to the uninitiated. At times she could make astute comments that showed a great deal of insight, and in the next breath not be able to use the right words to describe her confused ideas. It’s a great exercise in rolling with the punches, not correcting, dipping into her reality no matter how fleeting it is, and then back to my reality.

When it was almost time for me to go we wandered down the hall to her room. I traded out the few Christmas/winter decorations for Valentine’s Day things–a pot of faux flowers and some pretty hearts for her wall. As I did the work I came to do I saw that she was watching me with fascination. I smiled and started looking for the pillowcases that were supposed to be on her bed pillows. I found them and she asked “What are you going to do with them?” I said I would put them on the pillows so it would be more comfortable for her. “But how?” So I started the quick work of sliding/stuffing the pillows into the cases. She watched carefully and asked how I’d learned to do that. “Well,” I said, “I’ve had a lot of practice with a job I had.” She nodded and kept watching. I picked up the newspaper from her nightstand and said, “Oh, it’s today’s paper!” and I unfolded it for her.

A look of utter anguish crossed her face. And very quietly she said, “I don’t understand how you can know so many things. Why can’t I know things? Why?”

And that is an unanswerable question. I had nothing to say. So many times question/answer means problem/solution. There is no solution to this problem.

Setting new goals in challenging circumstances

The circumstances of the last three years seriously upended my well-established life rhythms (see previous post).  This situation keeps me on the road between two homes in two states, in two churches, in managing two households/properties. My suitcase is never empty and the 350 miles one-way door-to-door travel through sea-level valleys, a significant mountain range, and many miles of high desert is a job of its own.  I had to walk away from my employment, and scale way back on involvement in supportive friendships and on my creative endeavors.

None of these years have been easy but my mother was tumbling farther and farther down the dark rabbit hole of dementia with no one but me to help her.  Advocating and working for her best interests is at the front of my mind most of the time.

And then this last year brought more troubles than I could have imagined. In the spring my oldest daughter had to have emergency spinal surgery which left her fairly disabled with significant obstacles to overcome well into the future, and at the end of the summer someone very close to my family died in a tragic accident—it crushed all of us.

My purpose here is not to sing my lament, but rather to say that none of these life changing difficulties were anyone’s fault.  We could not have planned any better or have done anything differently to avoid the hard outcomes. And I want to acknowledge that they’ve changed my life in enormous ways.

Trying, heartbreaking times for sure.  Many times, all I could do was cry out, “Oh, Lord God in heaven, I need your help!”  Help came in a variety of ways, many times unexpected, but it still took all I had to push through.

As my load is lifting a bit, I’m finding more mental space to think about other things, to think about goals (besides survival) that are actually attainable.  So many of the 2020 goals I’ve seen published on various social media platforms are all based on the assumption that nothing important will change in this new year.  In fact, many are further built on the assumption that things will only get better because that’s the supposed natural progression of things.

 At this time in my life I need to think about goals that I can work toward no matter what happens around me or happens to me, because I know from a lifetime of experience that the externals can change very quickly.  I don’t want to be caught in a shortsighted cycle that says that I can’t grow or change or develop in some targeted way because I’m being challenged to what seems like my full capacity.  So, for now I have set two goals related to how I interact with and/or serve other people, and one “hopeful” goal regarding personal creativity.  All three give me reason to look up and out of my circumstances and are not dependent on where I am, but more on who I am.  I think the idea of a “hopeful” personal creativity goal is more loose–it gives me space to work with current situations and allows more easily for the ebb and flow of life while keeping my eye on something I want to develop.

 

Simple, liberating words

“You don’t have to be brilliant to be a good writer.
You just have to pay attention, and then give
an account of what you’ve seen.”
Jonathon Rogers
The Habit podcast

Finding springtime in the winter

In a few weeks it will be a solid three years since my step-father died and I had to walk out of most of my life to manage my mother’s dementia-driven world.  I can’t truthfully say that I provided care because she wouldn’t accept anything of the kind. It was more like walking, and sometimes running behind a toddler with arms open wide to catch her before a terrible crash, or to head her off before some disaster could unfold.  We came so close so many times, but we made it.

Soon it will be one year since she was discharged from the hospital directly into a memory care facility. That sentence makes it look so easy, but it was hard won and excruciating… and it took two years of incredibly hard work, praying, and waiting to make it happen.  Just thinking about that day makes my eyes sting and my chest ache.  It went exactly as planned but it was one of the most painful days of my life–a body and soul searing mix of extreme sadness and the profound and painful release of years of frustration, fear, and fatigue.  I wanted to scream, but it was all I could do just to breathe.

Having a parent in residential care certainly doesn’t solve all issues, but in my case it does offer the immeasurable relief of not having to keep my mother safe at home.  I am extremely thankful to have come this far intact.  It sounds dramatic but so much was at risk, for both of us.

It is the middle of January 2020.  We’re having snow showers on and off today with bright spots of blue sky and sunshine in between.  It’s typically a gloomy time of year but it’s springtime for me.  I finally feel like there are possibilities ahead even though I can’t see them clearly yet.  Happy New Year.

 

 

Eden

In the  summertime, particularly during the time approaching mid-summer I find myself fully at home in my world.  I used to think that early to mid-spring with bright bursts of color and surprising weather was my favorite but I’ve come to think it’s just the pathway leading me to the perfect place.

Here in the Pacific Northwest mid-summer dark does not truly come until 10pm or later, depending on where you are.  The air is warm enough to dry clothes on the line within a few hours, or least before it’s time to start thinking about dinner.  The roses are flourishing, flowers are blooming proud, and tomatoes, basil, mint are strong and healthy enough to give off their strong fragrances when I brush against them.  And in my kitchen the first scents of the day, even before coffee, come from the armful of peonies holding pride of place in the clear vase on the table, and from the nectarines ripening on the counter.  Doors and windows open, sometimes all night.  The perfect place, the perfect time.

The calendar says I came back from my mother’s home just a week ago, but it could have been months for all the work of readjusting to my own life and place in the world.  But then the freedom, freedom of time, space, and being and to be at home in my own house, and at home in the season of early summer.  Absolute joy.

 

It’s interesting to think about the freedom that joy brings, particularly when I’ve been weighed down with care and uncertainty.  It feels like my mid-summer Eden-like hours lift the top off the sky and anything, everything is possible.

Responding to Criticism About Care

About a month ago I was standing at a crowded deli counter trying to decide which salad to buy for my mother when I was surprised to hear my name called out.  I looked up to see a woman from my mother’s town, a good distance away from this busy store, and what started as a pleasant conversation quickly deteriorated into a quiet, intense and unhappy exchange while the other shoppers tried to steer their carts around us.  It felt awful, it was awful. I was trapped.  I didn’t want the conversation to escalate and I didn’t want to simply stand there and accept what seemed like harsh and uninformed judgment about my mother’s care.  My face probably told everyone that I was upset, but I kept a death grip on the handle of my shopping cart and on my response.   But the truth is I felt ill when I finally walked away.

For many reasons it was important to do what I could to keep lines of communication open with this person and her family.  So other than reminding her that she has my all my contact information and has always been welcome to let me know about new concerns or worries, I didn’t defend myself.

I’ll admit that this criticism went deep and it took days to get over my emotional turmoil.  You know how can be, once something touches a guarded painful place the held back emotions come to the surface and you can cry for days because there is so much to grieve over.

By the end of the next week I had reached resolution.  I’d prayed, thought, listened, and worked to come to a place of peace which both settled my mind and prepared me for any future criticism about the way I care for my mother in her deepening dementia.

In sharing the details with a just few trusted friends and professionals involved in our case I got much needed care and support which was comforting and helpful.  They reminded me that the person bringing the judgment was not involved in helping, and clearly had no idea of what was happening in my life with my mother.  My close friends reminded me that I was doing all I could do, and the professionals said I was doing far more than what most people are able to do.  Hearing their words helped bring me back to center and to keep the unhappy remarks in their proper context.

In my praying I asked for the grace to not take offense with this person, and to forgive her for the hurt she caused me.  I’ve been able to do this, and at the same time know I need to be cautious until trust is built—which might or might not ever happen. Either way I choose not to bring others into it to carry offense for me, or to cause people to take sides.

The biggest piece for me was pinpointing and understanding what I’m doing for my mother, and why I’m doing it, basically my mission statement ideas.  I knew all these things but I’d never narrowed it down to three our four clearly articulated points.

• Dignity and respect This is about how I treat her, how I relentlessly guard her and advocate for her, and how I speak to and about her.  This is about her rights as a human being, created in the image of God.  She is not made unacceptable by her disease.
• Patience and kindness This is about how I respond to her agitation, confusion, and endless repetition (or the sudden, momentary appearance of her former self).  This means pleasantly saying “Okay” every time she forgets a decision and changes her mind.  This is about dropping everything to help or to fulfill a request. This is remembering that she is a shadow of her former self and doesn’t know why.
• Practicing safety This means I do everything I can to keep her from harm, but it doesn’t mean that I get to impose my own standards and agenda over every area of her life.
• Being present in her happiness and in her suffering. This means that I “dip into her reality” when it’s different from mine, instead of criticizing or bringing her back to the present.  This means I choose to enjoy what she enjoys (even when other things need to be done), or to help her work through her confusion, fear and agitation (when it would be so much easier to walk away).

I don’t like being blindsided, but who does? It wasn’t easy but I now feel prepared to answer quickly and quietly if or when the need arises.  Unfair criticism and judgment can bring about good things.

(I make the long drive to see my mother every two weeks or more often if needed.  When I’m not there I rely a silent army of people who graciously stand by to provide help and on the professionals who have joined me in the quest to find the best solution for my mother and her care.)

It’s a Cascade of Change

It’s amazing how many things change when memory fades and falters.  In my experience with my mother the fading refers to memories that seem to simply disappear and the faltering to the encroaching confusion that pushes hard against the weakening memories.

Last week I was out in her yard talking with the man who has handled the home-place landscaping for many years.  He remembers my mother from the day she married my step-father some thirty years ago—days when she was a vibrant leader in the community.

He said, “Your mother is the same as she was 10 years ago.  We can chat and talk and she’s no different. She’s okay.”  As we talked I gently reminded him that she can’t hold on to a new thought for more than a few minutes, and that’s why she asks him the same questions over and over again.  “What do you have planted there?  That looks interesting, what have you planted? Oh, are you planting something there? What have you planted there?  How nice that you’re planting something there, what is it?”  He thought for a minute and said, “Well, that’s not all bad because it’s new again and she can enjoy it over and over again.”

If it were as simple as not remembering what had been planted in the big vegetable bed it might be okay.  But it’s much more than that. Along with memory issues there are often visual disturbances that keep the person from understanding what they’re seeing right in front of them, and word-finding problems that cause them to substitute words that may completely change the meaning of their sentences.  It’s a mixed bag and it takes a lot of mental energy to keep up with the swirl of confusion both for the person with dementia and for the people who are helping.

Here are some examples of how it can work:

• If the cat and dog food items are spread out and spilled across the tops of the washer and dryer, those appliances cease to exist—they have become the place for animal feeding.
• If the large dry-cat-food tin runs to empty and there’s an unopened 14-lb. bag of food right beside the tin, the new bag of food won’t exist because the tin is empty. Therefore, there is no cat food, and the floor (or top of the dryer) must be searched for individual pieces of kibble to press into cans of wet food.
• If the reason for taking medication has faded, then there is no mental trigger to take the pills, even if the brightly colored pill dispenser is within sight on the table. Conversely, on a good day the sight of the pill dispenser may trigger interest and multiple days of pills may be taken at the same time, or several times during that day.
• If a person can’t remember what they wore yesterday, then they will often default to wearing the same thing day after day for weeks. Visual disturbances keep them from seeing or perceiving the stains and grime, and fear of losing what little control they have over their life can make them refuse to change their clothes when prompted.
• If a person with dementia puts an appointment or a name on the calendar as a reminder they may well lose the context of what those words mean. She/he may say, “Help!  I found a name on a map somewhere and I don’t know what it means. Is it your name and where are you?”

It’s hard. It’s wearing. It’s heartbreaking.  I have to face every day with a predetermined mind set of patience, gentleness, kindness.  As an ever-present reminder there is a small stitched sampler hanging on the kitchen wall, directly opposite of where I usually sit.  “Love is patient, Love is kind.  I Corinthians 13.”

 

 

 

 

 

New Developments

If you’ve read some of my previous posts you are aware that I’m locked in a real-life battle with my mother’s advanced dementia and the laws in our country that seem to promote self-determination over health, safety, and common sense.  These laws allow her to refuse the help and care that would keep her safe in her own home, and prevents facilities from accepting her as long as she refuses to give her consent.  Unless….  It’s that unless part that can be very complicated, expensive, and difficult to achieve.

I am aware of the possibilities of Guardianship/Conservatorship.  In my years of elder-care management I’ve seen the very best and the very worst of this option.  It’s important for me to say that I’ve been advised by attorneys on both sides of the State line that this should be my option of very last resort (and that opinion was offered again as recently as yesterday). Every situation is different, so check with an Elder-law attorney in your area to see if this would be a good option for you or someone you know.

Just lately I’ve come in contact with people in two separate programs who are very willing to try to help me in my struggle, and to help my mother in her desperate need for care and safety.  One of these programs was recently developed and funded through our 2018 State Plan on Aging. This program was not advertised, and I happened to find this person through a very long, circuitous route of referrals.

Since we are just at the very beginning of an uncharted process I don’t want to share contact details yet, but I do want to talk about a few things that can help you move ahead quickly once you find someone who can help.

But first, for everyone:

• If it hasn’t happened already, try to get your loved one to designate a Medical (or better yet a Durable) Power of Attorney, or otherwise an  Advance Directive (free and available online). The latter document has two parts, A) The kind of treatment they wish to receive when they can’t speak for themselves, and B) Choosing a Healthcare Representative and an alternate person.  This designation allows the chosen person to talk with healthcare providers and allows them to participate in healthcare decisions when needed.

Now, for those who are caring for someone who refuses the help they really need:

• Make sure all your help is organized and documented—keep notes. Make a chart if it helps. (Who visits regularly, who does home maintenance, who invites for holidays, who does shopping, cooking, and laundry, who helps with care?) It will be important to be able to quickly and clearly articulate what you and your family group are doing in support of the person with dementia or other debilitating illness.  Not only will this help you identify where your group could be more efficient, it will also help you know when you’ve reached your maximum effectiveness.  (I keep a running Log in a Word document and I send a monthly group email to all helpers.)  Adult Protective Services generally asks for this information or will try to find resources for you from your family and friends.  Save them the time and show them that you’ve already done it.
• Ask and answer the big questions: Is our plan sustainable? (Sustainable is a key word in social service agencies.) Can we keep doing this? If we could find a way to do more would it even help, would it change anything?
• Start building a case. Keep a log of your care-related activities, note changes in the person with dementia, keep copies of important documents and letters (especially things that make note of the diagnosis), take pictures of situations that are unsafe, call local authorities (Adult Protective Services or local law enforcement/emergency services when appropriate), whether they can immediately solve your problem or not your call will become part of the record.
• Study the illness so you can understand and anticipate the changes. Learn the correct terms.
• Communicate with decision making agencies. Keep them up to date on changes. Follow up—if they don’t get back to you, call again.  It’s important to let these busy people see that you care for your family member and that you sincerely want the best for them.  All of this helps them help you. (When I send safety-related pictures I try to include one of my mother enjoying something.  It helps them think of her as a real person, not just another case.)

It sounds like a lot, and it is.  It’s the work of an advocate.