As caring humans, we want to solve problems. Fix things. Fight. Cure. Why wouldn’t we?
As a result of this innate need to fix things, to make progress, to help someone heal — we don’t deal well with unknowns. We can’t fix what we can’t nail down.
The variability of Lewy Body Dementia (LBD) is nothing if not a relentless creator of ambiguity. We can’t know whether we’re coming or going, what will happen next or what crisis will next arise. Is our loved one “with us” today, or “absent, but still here?” Moods change, abilities, speech, comprehension, body functioning and mobility all change — and in many cases in ways we that cannot predict, because of the variability of the condition.
Our loved ones may seem to be the living embodiment of ambiguity. They’re here, and gone. Thinking clearly, and then confused. Eloquent, now gibbering. Walking fine, then unable to rise from a chair.
Again, as caring humans, we don’t like ambiguity. Ambiguity can’t be “fixed.” Understandably, we are especially ill-equipped to deal with variation, vascillation and unpredictability: hallmark symptoms of Lewy Body Dementia.
Any type of dementia brings a great deal of ambiguity and unfathomable loss, both for the person with dementia and for the care partner. Great losses like these typically result in grief, but this grief is not typical, since there is no “departure.”
As care partners, we are losing our loved ones all the time. And sometimes we find them again — for a period. But LBD is a progressive condition, so the loss is always on the horizon: sometimes present, sometimes more distant, but always with us. And because of that, it’s been referred to as “Ambiguous Loss,” a phrase coined by Dr. Pauline Boss, Professor emeritus at the University of Minnesota.
Ambiguous Loss applies to any carer dealing with any dementia. It may have special implications for care partners of a loved one with Lewy Body Dementia because of the variability of the condition, where there is frequently no way to know what condition the person will be in next: rallying, stable, declining, psychotic, or as if nothing is wrong.
Dr. Boss contends that in many cases grief does not ever really provide “closure” and that the often-referenced “five stages of grief” are misleading. A statement she makes will be poignant for many people dealing with Lewy Body Dementia, “with ambiguous loss, there is no closure. The challenge is to learn how to live with the ambiguity.”
A powerful outcome of understanding the concept of ambiguous loss seems to be an increase in our insight. And with that, understanding that to be more effective as carers, and to be more stable emotionally, we have to accept that ambiguity. That is no easy task, but warrants continued attempts.
“We don’t like to accept, but maybe we can be comfortable with what cannot be solved.”
Here’s a great 50-minute podcast by Dr. Boss. She presents a compelling case for acceptance, with ideas on how to move towards it, and speaks broadly about a range of issues from the lack of “closure” in grief, complex grief, and living with unanswered questions.
For more information, learn more about Boss’ work on Ambiguous Loss. You can also read some individuals’ reflections on Ambiguous Loss on the OnBeing website.
Strength to you!
Timothy Hudson
Updated July 3, 2016
Yes, I am thinking that prolonged grief that I went through in April and May, 2016, was rooted in the causes she discusses in this podcast. Just could not put my finger on what was wrong except that I was crying all the time, or near crying. But I could not find the source except it was somewhere deep inside a profound well of sadness. And then gradually I started to move forward out of this place into a balance of acceptance and resignation. Where I remain today – Acceptance of uncertainty and the surety of unpredictable events and outcomes. A profound experience and I am ever grateful that it is over.
I now say that actually I don’t give a damn what happens anymore — I will just let it happen, and resistance is futile. My level of dedication to care is still the same (I have always laboured over the small stuff) and like the spaceman lost in the universe, I simply float towards eternity.
Now we are thinking of getting a dog! Maybe a dog would fill in the blank spaces of living in our world.
Best Regards….
S.P.
Acceptance is very hard. You’re doing a great thing, and one which so few step up to.
Having a dog in your life would be a big plus, I think. There are many, many adult dogs who are euthanized when their owners can no longer care for them, shelters are full of them. Having a house-trained, loving pet-friend is a welcome addition, and if you health makes it difficult caring for your dog, it is not a frisky young critter, and will be less demanding, so you can continue having it in your life for longer. There are well-documented health benefits: decreased blood pressure, isolation, depression and increased fitness and all the joy and love a companion brings. Rescue dogs often rescue their new owners.
Strength to you!
Thanks for the comment, Timothy.
This week we made an arrangement for a therapy dog to visit. This might be the permanent answer to the dog question. LO is not responding to the dog issue, neither positive nor negative, just not interested and puzzled why we are talking about this. I think I will go into my drift mode and see what happens.
OMG I feel exactly like you…
My husband of 50 years has been diagnosed with Lewy body.
I have been saying this for more than two years.
Now the doctors agree with me..
One day at a time .
Thank you for helping people understand Lewy Body Dementia. We are working our way too, finding help for my husband and look forward to reading more of what you have to tell us.
I’m glad to be able to provide whatever help I can. You’re doing a great thing as an advocate for your husband, Rita.
Strength to you, and to him!
Timothy Hudson
Reading this felt like my own story. My husband is recently diagnosed.I have always been the “fixer” and the unknown has been very difficult. Words can not express my appreciation to you for creating this website: feeling doubtful if I had the strength to move forward, I now know I can do this, and just a little reminder that I am not alone in my experiences. You have given me energy to move forward and push to acceptance. Thank you.
Thanks for your kind words, Marinia. That means a great deal to me. We can definitely make an infinitely significant difference to those we care for, and knowing others have gone before us, and survived — somehow — makes the darkest hours at least a little bit brighter. I am 100% sure that you will keep moving forward, to acceptance, and with renewed energy. It’s in you, and what you’re doing is incomparable, making your husband’s life a miracle, even though it may not seem like it at the time, because of how difficult some things are.
> Strength to you, and knowledge, wisdom, acceptance and compassion as well. You have them already, and they will grow further.
> Timothy Hudson
Pingback:Living with Constant Unknowns and Ambiguous Loss – Disability Cosmos Daily
That’s certainly a worrisome set of behaviours, and he’s so blessed to have you straighten things out so effectively, Connie! Sounds like you did everything right, and what a dramatic and rocky set of symptoms. Glad he’s doing so much better, and I hope things continue to stabilize and improve.
Strength to you! Timothy Hudson
My husband constantly talks about his poor eyesight yet he had had 2 eye exams in the past 12 months and was told there is nothing wrong with his eyes. He says printed words waver or are blurry which makes it difficult for him to read or watch TV. He also says he finds it difficult to follow tv shows. Is the vision problem common with LBD? Linda L
Yes, the vision issue is very common with so many people I’ve interacted with who are afflicted by LBD. My belief is that it’s a combination of many elements, but one I believe is very common is that the eyes, themselves, are fine, but that the ability to interpret what’s seen, and to understand it, is not — that it’s the brain that’s the problem, not the optical apparatus — and alongside that, the language to describe this, or even the insight to recognize what’s happening, may be compromised, so it’ll be described as blurry.
Strength and courage to you, Linda. Timothy Hudson.