Judith is
the author of The Sacred Women’s Circle series, romantic fiction that honors
spiritual practices that nourish the soul and celebrates the journey from
relationship to romance.
I’ve two friends I met in
1980 who have “memory loss” or “dementia.” They have different forms of
cognitive decline. (I learned there are 30 different types of dementia while talking to
the primary care doctor of one of them). But back to my story.
I unconditionally accept
that both of these exceedingly bright people have dementia/memory loss.
I unconditionally accept
that it shows up differently in each of them – but that does not make the
diagnosis less accurate.
I unconditionally accept
that I will remain their friend until their death even beyond the time when
they no longer really know who I am.
Now to unconditional
support.
One of my friends lives in
the same community I do. When his wife was dying she asked me to watch out for
him. I agreed. After her death, he asked me to help him. I agreed. This past
year has been fraught with all sorts of challenges as I’ve attempted and at
times succeeded in supporting him.
In some ways it is easier
with him being nearer. I can stop by and talk to him, see his physical
reaction, talk to staff (yes, I assisted him in moving to a protected living
situation so he’d be safer). He also says he has dementia and while not
thrilled with the diagnosis, he has made peace with it.
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| Sunset on the Oregon Coast - a place we all love |
We spoke on the phone last
night and she was distressed. She’d heard there was a new drug on the market
and she’d called her doctor to ask about having it prescribed for her. When she
was told there was nothing to be done for her, she told me she cried and cried
and cried.
Part of her story was that
the receptionist or medical assistant told her in what was, to her, a harsh
tone of voice. So, being who I am, I asked her “If it was true that there was
nothing that could be done, how would she want that information told to her?”
I ended up asking the
question two more times because she just didn’t seem to understand it.
However, when she answered
it, I understood it wasn’t her memory loss (that’s the only term she can use to
reference her cognitive decline) that was the problem.
She is unable/unwilling to
accept that there is nothing that can be done. She believes as long as studies
are being done, researchers are seeking cures, there is a chance that the
progress of her disease can be halted.
Knowing this, understanding
this gives me a different way to unconditionally support her. I won’t be asking
her the kinds of questions that create that dissonance for her, the ones where
she faces the answer she doesn’t want.
She said “Why would I want
to live if I knew there was no hope and I’d become a vegetable, unable to care
for myself, unable to enjoy anything?”
Of course she would not want
to live under those circumstances and knowing her for 37 years I totally
understand that.
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| Lily helps vulnerable adults |
As her memory fails (the
past 10 – 15 years have faded to almost nothing). I can listen and reminisce with her about the trips and other events
we’ve shared.
As her memory fails, I can
remain her friend even when she isn’t sure who I am I can still show up in her
life.
These are just two examples
of people I unconditionally accept as they are and unconditionally support as best I can.
Please share your thoughts
in the comments section so we can have a conversation.
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2 comments:
First, you are an AMAZING person for this kind of unconditional LOVE and support you provide these two different friends. They are exceedingly blessed to have you in their lives. Second, your practice of unconditional love and support is one that many people cannot take on for themselves. It takes a centered person, someone who is very comfortable with herself, her beliefs and values, that she can take that final journey from life to death with someone else. American's, in general, are not at all comfortable with thinking about, planning for, or even discussing the prospect of death. That makes it really hard for them to provide support in that journey.
It is incredibly hard to stay so supportive as a person declines--whether it is a dementia diagnosis or any other terminal disease. It is hard hearing the emotion behind their experience and the pain of the difficult decisions they need to make. And often stay with them as they go back and forth on that decision and go through all those emotions again and again. It is a rare person who can practice this kind of unconditional support.
Many people cannot do this because they cannot separate their friends reaction from their own. Some people fall into depression themselves when they can't "fix" the situation for their friend. In the case of dementia or alzheimers, it is even harder if/when they get to the place of not knowing who you are. It is easy to think: She doesn't even recognize me. Why am I putting myself through this? I've heard many children of failing parents be unable to cope.
Most of us get something back from friendship--at least some type of recognition of ourselves as individuals. Friendship is a two-way street of give and take for most of us. Even when two friends are healthy, if the relationship is not balanced the friendship usually falls apart. If it changes so that one person is continuously taking/needing and the other is getting nothing to nurture them. It is rare that friendship survives. Yet, what you describe is that change.
I certainly agree, from a personal perspective, that being able to accept and transition with a progressive disease is the easiest way to go--like your one friend. It allows you to be present in the world to the best of your ability and hours are not filled with stress or trying to change that reality. However, one cannot expect someone to change who they are because they are dying. My experience has been that when people receive a terminal diagnosis they tend to intensify their response even more than in their healthiest days. If they were always a fighter against reality they become even more so--like your friend who is certain there will be a cure. Whatever, one is in life usually does not change when they are toward the end of that journey. If the person lived life in a roll-with-the-punches-and-move-on kind of way, then they do that then as well.
Bless you, Judith, for being who you are. You are an example of someone who practices and lives her values even when it means heartbreak and challenges.
Thank you, Maggie. I've found that this is in reality the last gift I can give to someone who is a part of my life. When I was a professional guardian, our Code of Ethics stated that we were to make decisions as if we were that person. That perspective has been a blessing because it takes "me" out of the equation. I will admit that I'm no where near 100% in that regard but my friends and family who have and still do ask me to be their Health Care Representative know that I will do my best to honor their wishes at this point in their lives.
My brother told me a story that stayed with me. He attended a church service - just walked into a church he wasn't a member of one Sunday. The pastor's sermon centered around the recent death of his father and as my brother recounted the words and I paraphrase: If we believe in the hereafter with our God then why would we not rejoice when our loved one goes to join Him?
Living our beliefs and values isn't always as easy as we think it might or even should be but when I am struggling with a problem, I do stop and reflect on where my struggle comes from. Often it is my attempt to "make" someone else live "my values" instead of supporting them in living their own.
Thank you again for a thoughtful response to my post.
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