Eden

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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.

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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.”

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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.

Still on the Path

Over these last many months there haven’t been any words to write.  The words I do speak go to the same friends, over and over again.  And they, in acts of love and mercy keep listening to me.   May God bless them for their patience and kindness.

The road of dementia is hard for everyone, whether in the trenches, helping a loved one in the trenches, or as a bystander who can’t figure out what to do.

In my case, as with many others in this country there is very little help available for three reasons:

  • The lack of elder services in rural America, frustratingly compounded by living close to a state line where the few services in place can’t be accessed because they’re on the other side of the line. Twenty-five miles might as well be twenty-five-hundred.
  • The federal laws of self-determination passed in 1999 meant to give elders a choice about where they live. It’s good, except for the people with advanced dementia or some other disease process that keeps them from making accurate or sound judgement about their condition and their care needs.  These laws tie the hands of the families and friends who have (ethically and morally) to provide care, and puts many families into significant hardship and sometimes into financial disaster.
  • The lack of physicians specializing in geriatrics. Old age is like a different universe– a different body, a different vocabulary, and different needs. Our country seriously needs more doctors who understand their elderly patients and who will work with those who care for them.

There’s got to be a better way.  For someone like myself, with years of elder care management behind me the outcome is no different than for a person who comes into dementia care without a network, without resources, without experience. We are all frustrated, sad, and exhausted.

Twice in the last month a new question has come up. Who will you tell?

As I sat at my dining room table trying the explain the root of the problem to my sister-in-law the question came up.  “How do we make changes in the laws that tie the hands of family caregivers?  Who will you talk to?

And a former co-worker, a retired elder-care RN said, “I wonder how you will use your experience to help make changes?  How can this terrible experience be used for the benefit of others.  Where will you start, who will you tell?”

The answer is, I don’t know yet?  Do you?

In the meantime I stay on the path. Doing the next thing, shaking every tree for help and resources, praying without ceasing.

Dementia and Mercy

Dementia

Dementia is a beast, there is no doubt about it.  It is a thief that comes to steal and destroy.  As I watch (and listen to) my mother’s frantic anxiety as her mind goes away it’s laughable to think that experts say that exercising your brain with hard thinking could keep dementia from finding you.  From my vantage point that’s like saying you can think the dark away if you try hard enough.  There is so much we don’t know, however, people who provide hands-on-care (as well as some experts) do know that well-accomplished highly educated people struggle more, struggle harder with losing their memory, their ability to think and reason clearly, and with losing the ability to maintain a solid sense of self.  An extra crossword-puzzle a day will not fix this problem now, nor would it have kept it from happening.

My responsibility is sad and heavy.  From quite a distance I provide the plan and the direction for my mother’s care.  Care is a loose term as she is completely resistant to help. Her dementia has reduced her cognitive abilities by at least half and she continues to believe that this frustrating and frightening state of affairs is due to something that other people are doing to her. Her raging anger is justified, but clearly misplaced.

The people who provide the little care she will accept are members of her recently deceased husband’s family and a friend or two from their tiny country church.  Of course, she doesn’t recognize it as care, so their ongoing presence in her life is acceptable and for the most part welcomed.  On occasion they invite her over for dinner (but she is becoming disruptive), they spend their days off with her (outside because her house is seriously dirty), they pick her up for church (where her conversation goes around and around in an unhappy loop), they take her to the very small local grocery store (because she becomes grossly overwhelmed in the large supermarket a half-hour away).  They take her to doctor’s appointments and will pick up her prescriptions when I let them know that the pharmacy called.  They are like a silent army around her, trying valiantly to treat her like the person they remember to be. They check in with me by phone, texts, and email.  We work together to do the best we can.  I drive the 6-8 hours once a month and usually stay anywhere from three days to a week.  One time I stayed a whole month.  All of this strain and fear and extra effort of kindness and care have to happen because she refuses to leave her home for a care situation and because she can’t be placed against her will—not yet, and not without some catastrophe.

I do not mean to downgrade the efforts of these beautiful people by referring the “little” care she will accept.  They are giving mightily and would do more if she would let them.  But this means that there are no prompts for hygiene, no housekeeping or laundry being done, no one is allowed to clean the spoiled food out of the refrigerator, and no one is cleaning up after the animals who are not encouraged to use good in-house hygiene habits any more. And no one really knows what she eats or when. There is new danger everywhere when a person can’t remember how to turn things on or off, or how to lock and unlock.  In our last phone call she told me that people have locked her out of everything in her house, that she can stay in only one room during the day, and the only way she can get out is to crawl under the door.  (She speaks this as literal truth, but it takes some  decoding to understand that it’s a description of how she feels.)

Sad. Frustrated. Often overwhelmed.  All of us. Most of the time.

The local authorities say that she seems to be doing okay and that she’s not in clear danger.  They might change their minds if they continued to hear and see what the rest of us hear and see.  But it is what it is.  I am grateful for my years of experience in the field of elder care so I know more than many people who are faced with a similar situation and I have a few more resources at my disposal.

Mercy

And so we practice mercy—certainly the people who live around her continually show mercy in practical ways.  I do the physical work while I’m there in her home, I clean (which upsets her but keeps her more safe), I cook beautiful enticing food (that she often can’t taste or recognize), I listen to her spiraling anguish (which goes on and on) and do my best to relieve her anxiety and redirect her to more peaceful thoughts. But the rest of the time I’m praying and searching for better ways to help her and keep her safe.

I’m not Catholic, but I set great store by many of the teachings of Pope Francis—no matter if you’re Catholic or Protestant or somewhere in between you will find that he does speak universal truths.

Last November he made a statement that went straight to my spirit, my heart.  I am one of those who feel gifted for works of mercy, and whenever someone speaks about mercy in new ways I listen.  I have his words on the desktop of my computer so whenever I open it I see …

 Now is the time to unleash the creativity of mercy, to bring aboutnew undertakings, the fruit of grace.

 He wasn’t necessarily speaking to adult children of aging parents with dementia, but the words certainly spoke to me.  There is so much power and movement here—unleashing indicates that something has been restrained and that it’s longing to be freed.  Creativity speaks to all kinds of empowered movement across the whole spectrum of the human experience. And beautiful mercy, so often thought of as only gentle and quiet, meek and mild is now shown as a power ready to break out allowing us to do new things that still, in the end, point back to grace.  Powerful, innovative, creative work that makes way for kindness, compassion, and care that meets needs and changes the world.  Sometimes it means pushing against the norms, envisioning new things, and taking risks in real life, other times it means being quiet and meeting needs in a way that is relevant only to the person on the receiving end.

That’s what I want.  I need more of that kind of power unleashed for me, in me to find the way to get the best care for my struggling, lost mother when it seems like every avenue of help is closed.  I need that unleashed power to better fulfill any and all of the life tasks ahead of me. I need that power to see and begin new things.

And so I pray and listen, ready for the next step.

Summer

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The glorious moments of summer can save the day.  I’m ready for them, I breathe them in, especially this year while working under heavy loads of responsibility shadowed with sadness.  These joys require little besides the ability to receive them in the moment.  They are health giving; life sustaining. Gifts.

These are mine: Brilliant blue skies and white clouds, bright blooming flowers, fields of grain nearly ready for harvest, a small town 4th of July celebration with children crowding to pick up candy tossed from old cars and firetrucks in the parade, dinner under the trees, the perfume of nectarines ripening in the kitchen, long light-filled evenings, windows and doors open at all hours, putting fresh strawberry jam in the freezer, hearing the birds, friends who bring extra fruit and produce to the door, a movie in the park, ice cream, fans to keep the warm air moving, laundry dried on the clothesline, snow on the mountains, 72 colors of green in the forest, tomatoes ripening on the vine, watermelon, watching a pair of Northern Flickers enjoy my backyard, the encouragement of friends.

I am grateful.

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