It’s sad but clear

We are preparing to let our loved ones go. It’s impossible to predict if we are headed to a long-term care facility. It’s hard to tell how long we’ll have with them once the disease starts. It’s even hard to guess where and when the next phase will take us.

As I started my journey with Burt, I wondered how long we had left. I wanted to plan. I felt guilty for looking towards that future.

None of us has a clear path in our mortality. We want to live as long as we can. We want our beloved by our side as long as is humanly possible.

Most of all, we want us all as safe and well as we can be.

Honestly, within the parameters of Lewy Body Dementia our time frame can be shockingly short, or it can be surprisingly long.

Planning is for those moments of worry and insomnia.

Living each moment as it comes is the daily reality.

Resistant

My guy doesn’t make it easy to help him.

Some two years ago, he had trouble swallowing. He was limited in his eating for quite a while, yet he mocked “the chew doctor.”

Instead of working on the issues, he resorted to a diet of lemon meringue tarts. I practically did a dance when he added tuna to the menu.

While he was in rehab last year, he had a speech pathologist who pretty much saved his life. She warned him about malnutrition and got him finishing his meals. Since he came home, he has reverted to not eating anything but the sweets. Almost.

We’ve brought back the speech therapist. She gave him some helpful pointers on how not to choke.

Now, she is principally working on voice. Lewy Body will affect the vocal chords, so soft voice is an issue.

I could allow him to indulge only in Madeleines and peach pie, I guess. I tend to worry about his nutrition and want to see more variety on his plate.

This is where Lewy might just get the better of us. Like everything Lewy, tastebuds can be very unreliable.

A food that he had been enjoying suddenly becomes unpalatable. Like other aspects of the journey, we are on a roller coaster.

Inspiration

There is plenty of help along the road as we journey with Burt’s dementia.

Teepa Snow, whom I have dubbed “the dementia whisperer,” offers priceless online advice and interactive sessions for caregivers. YouTube is an outlet for her superb videos.

You can find Careblazers there as well, with Natali Edmonds providing lots of guidance for the journey.

Jason and Leslie are Living with Dementia also on YouTube. Their kindness and youth are striking features of their story. Jason shares the “patient’s” point of view with equanimity and generally cheer.

Weekly “affirmations” land in my email box from Janet Edmunson,
Author of Finding Meaning with Charles: Caregiving with love through a degenerative disease
(www.janetedmunson.com)

My message board group of LBD spouses is invaluable. I talk to a therapist weekly. I rely on groups from the Alzheimer’s Association to help me chart my course. I participate in Zoom meetings with other caregivers.

Oh, and I have learned to accept help when it’s offered and occasionally ask for it when I need it.

If you are traveling this road, you need all the support you can muster.

Respite

It’s frequently a piece of advice which some caregivers have come to resent.

It is given in a spirit of concern, but some of us feel it is de trop. “I know I have to take care of myself,” one of my confederates said. “I don’t need to be reminded.”

Take care of yourself. If you don’t you won’t be able to take care of your person.

This is a sincere suggestion. We know it instinctively.

However, we sometimes don’t act on it.

I pride myself on having insisted from practically day one of my honey’s illness on getting care for him. This was also care for me.

I frontloaded a care schedule for him so I could get out.

I am pretty adamant about my time for me to go to the gym, out with friends, walking, and on one sweet occasion to see the Ballet Hispanico perform. (A great half-hour presentation that gave me joy as fuel.)

More recently, I was able to enjoy a special luncheon for Weill Cornell Medicine. There was a wonderful refreshing component in the midst of the food [good], drink [nice], company [great], and speeches. The painter and performance artist Dan Dunn was that extra attraction.

I am bragging a bit. The truth is that these kinds of respite are rare.

The ballet performance and the lunch event brought me back to pleasures I had missed. They took me out of my routine.

This was a way to recharge beyond the usual. Sometimes, we need that.

Burt’s p.o.v.

The last couple of days, he’s brooding over how long he has left to live. He says 28 but means 2028, which is 8 years after his dx in 2020. I say no one can predict, and 8 years might be an average.

My husband is a brooder. Before his diagnosis, he tended to be moody. Lewy Body Dementia, the roller coaster that it is, has accentuated his mood swings. Worrying about the time left to him is one side of those swings.

Since I referred to ‘swings’, I also have to acknowledge the times he finds enormous happiness in the smallest of things. I need to tell you that he is often grateful and expresses gratitude to me.

He has said that even with the disease, he is the happiest he has ever been.

His worry over his mortality is the current mood. Not all the time. That would require more concentration than he’s capable of at this point.

From the other’s perspective

It’s easier to speak of the “job” we do as caregivers and how hard things are for us.

It’s more of a heartbreak seeing things from the point of view of our beloved.

Dementia is very hard on them. My husband explains that he has a brain disease to people he knows.

Sometimes, he is stoic, philosophically discussing his condition. Other times, he asks, “Why? Who gave me a brain disease?” He worries over what is happening to him. He is engaged with his condition.

I know his challenges are also mine. I have to remind him that I love him and care for him. He feels alone and isolated and dependent upon me. All this has to be too much for him, too.

Not every person with dementia (pwd) is as aware as he tends to be. They all suffer through difficult symptoms.

As a caregiver, knowing how hard Lewy is on him helps keep me more patient.

Where we are

Everyone seems to have settled on calling this a journey. I get it. Life is a trip we take. It’s a journey we have undertaken and a course that we are set upon to follow.

Whither it takes us, we go.

Like many others amongst us, our journey took us to unexpected places.

Several years ago, as a culmination of unforseen outcomes, the love of my life was diagnosed with Lewy Body Dementia.

The diagnosis came at the tail end of lots of vaguely identifiable symptoms.

In other words, it was clear that something was very much amiss before we got the actual word.

In truth, as is true of many of the 400 dementias, he may have a mix. LBD is just his prevalent disease.

Unfortunately, we are lucky in that he knows what he has. He is no longer in denial. That is heartbreaking.

Hesitant

There are many excuses for my reluctance to post about such a personal matter.

It’s Lewy Body Dementia Awareness Month, and that has jogged me towards sharing our experiences.

My husband was terribly confused at first. Those were his symptoms. He didn’t know who I was and would often also try to find me. He denied the disease, and this was hard.

Now that he understands that he has dementia it’s more heartbreaking. This is his journey, and recognizing it is how he copes.

He is still often confused. Lewy Body (which he sweetly calls Benny Blue) is an up and down route. Sufferers and their loved ones call it a roller-coaster.

I have always hated roller-coasters.

There are expert resources, and the LBDA is one. For information, go to https://www.lbda.org/.

Along the way

It’s been an unexpected journey in every way.

Along the way, I have met women and men who care for their partners with dementia. Some of these caregivers are providing comfort and support to former spouses or even ex-boyfriends.

This speaks to the connection they have with their exes. It also speaks of the deep connection that love builds.

Most of us would not choose caregiving a loved one. It’s a role that is thrust upon us, often suddenly. My path to carer keeps evolving. I have become a bit better at it.

When your spouse has this disease, it is all too easy to let frustration lead. Patterns of your life, which include impatience and exasperation, come to the forefront.

It takes time, but love will remind you.

That doesn’t mean I don’t lose my temper.

I have heard others say it, and it’s true for me as well: since Burt’s diagnosis, I have found a deeper love than I thought possible.

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