Is it challenging?

What is the biggest challenge you will face in the next six months?

Staying positive and appreciating the opportunities that caregiving offers is the biggest challenge.

It’s too easy to find the hards in the journey. Focusing on those makes it just a little harder.

Looking at the love that binds us together as we live in the nightmare of  this dementia eases everything.

So, what is there to keep me looking at the bright side?

I am so grateful when Burt shows his appreciation. It’s a beacon of light in our tunnel to have him thank me. It’s even more gratifying to exchange “I love you’s.”

Laughing together is a very special experience. We find the silly in odd moments. It’s a blessing.

Little inconsequential arguments can feel like our old normal. It’s true that any disagreement has to be temperd; Lewy doesn’t like to be contradicted. We can still have a mild “betcha you’re wrong” conversation.

It’s wonderful seeing how resilient Burt can be. His strengths make it easier for my guy – the one who never gives up – to enjoy his life.

I am grateful.

What would Burt say?

What advice would you give to your teenage self?

Don’t get old is advice he’s meted out. Another favorite is don’t get dementia.

Burt would definitely suggest those bits to his teenage self and yours.

Life remains an enigma. We don’t know where we’re going or by what means we’ll get there. “Don’t get old” seems a tad short-sighted in that context, but we get the sentiment.

Lewy is unlike other dementias

Alzheimer’s is an orderly dementia. It progresses in stages. There is a pattern as its awful symptoms afflict your loved one over time.

No dementia is easy. They are each unique. 

Lewy Body is unpredictable. 

Symptoms come and go.

You and your person can be plunged into troubling situations one day, only to have a better week the next.

Your sweet spouse is wracked with confusion or anger or anxiety. Or all three.

This track of thought came to me during a webinar by Jim Taylor of Voices of Alzheimer’s. Jim spoke of the  partnership he and his wife Geri had as she struggled through the early stages of an Alzheimer’s diagnosis.

Burt plunged into dementia with delusions, hallucinations, and other behavioral manifestations. Some of this was ameliorated by medicines.

His symptoms did not encourage me to try to work in tandem on planning. It all felt very much like the disruptive emergency it was.

Today, it might be a good day. His confusion and cognitive impairment make even simple plans hard.

When your loved one has dementia, you are living a disease that is built for two.

Symptoms come and go.

And just as a reminder, see The Gift.

The gift

His hand is so much bigger than mine. I feel protected holding his hand, and yet I know it’s my job to protect him.

When he was first diagnosed he denied the diagnosis. I thought if only he knew it would be so much easier. I could justify the decisions I had to make, explain the things he was losing.

Since he is now aware of this awful disease, lamenting it as he explains it to neighbors and friends, I am aware that it is not easier.

He still doesn’t understand his losses. It’s heartbreaking to see him worry over the effects of a “brain disease.”

Knowledge in this case is grossly overrated.

Literary illusions/alusions

In the beginning, just before we got his diagnosis, I would describe our life in view of literature.

The comparison to Ionesco fed my worldly aspirations. Rhinoceros also kind of described where Capgras was leading us.

Of course, Groundhog Day also fit the bill when repetition was a regimen.

An attempt at absurdist wit was a welcome diversion. Lewy is an awful disease, which causes our pwd to act absurdly.

It brings an unwelcome chaos into our daily lives. Sorting it out any way we can feels necessary.

Once the diagnosis was securely in place, I slowly allowed it to sync with our reality. I no longer describe our life in fictional terms.

I still sometimes preface a report on our experiences with “you can’t make this stuff up.”

The facts are often really stranger.

All the to-dos

Write about your approach to budgeting.

There are so many things that can overwhelm the caregiver in this journey.

It’s not just the responsibility – both financial and physical – and our loved one’s urgent and ongoing needs, but the long lists of what-to-dos.

There are supplies we have to keep on hand.

Burt just reminded me that we should always have his briefs in the closet. Amazon is frequently the supplier of choice for many of us; this is not a plug, but their subscription program has been helpful.

With Lewy Body Dementia’s havoc to the tastes buds, responding to what Burt will want to eat requires frequent list adjustment.

The financial tasks and watching the money dwindle are not a lot of fun. There are times these are matters that keep me up.

The most daunting to-dos have to do with mortality planning.

We, as caregivers, all know that we might be the first to go. This is not just depressing but also requires juggling the care for our person.

Preparations include having wills and POAs at the ready. (Something that should be on our first post-diagnosis to-do.) We also need to know where our beloved will spend out his days. And under whose care.

Generally, this requires visits to one or another of the most disheartening of our healthcare establishments.

If you find a small group home or similar homey place, you are lucky. Most skilled nursing facilities or nursing homes are not likely to feel inspirational.

As with all things you do for and with our loves, do your best.

I love you

Reassurance is important for my person with dementia. I slip and forget sometimes.

I realized this today when I said, “I love you, sweetheart.” He did not respond with an “I love you too,” but with “you didn’t tell me in a long time.”

His remark serves as a reminder to me to say “I love you” often each day.

Saying it aloud helps me stay on the positive side of caregiving. Those 3 little words remind me of what caring means.

I wrote a note to hang up along with my reminders for him of his schedule.

It says, “Burton, I will always love you, Tamara.”

My note can’t replace my declarations of love, so I will keep expressing my feelings. Loudly and proudly.

Giving my best. Doing my best

Burt expects me to deliver my best self. He knows it doesn’t always happen.

“I’m doing the best I can” is often dismissed as not good enough.

Sometimes, it’s met without challenge and accepted.  Forgiven or forgotten.

The other day, when we established that no aide would be with us, Burt asked me if I would stay calm. “I’m a good teacher, I found out. I’ll teach you how to stay calm.”

And  I guess apropos being able to keep cool but perhaps being overtaxed: “It’s amazing the hard work you did with the party. All that hard work doesn’t just go away.”

Later in the day, when I did indeed lose my composure to yell at him, he wound up apologizing for his long, incessant rant about how badly I had been treating him.

Truth be told, up until my little fit of rage, I had not been anything but patient. The rant against me was due to his anxiety over something else. I knew that.

I could have gone for 100%, but for a moment, I lost it.

My best mimics the rule in Japanese pottery; there is an imperfection, a dent that emphasizes its perfection. I did my best.

The confusion

It’s hard to resist the urge to say “really? Really, you don’t know that your first wife was named Susan?”

Just one of a series of “really’s” that his infliction brings to the fore.

As we’re on a high of successes, his confusion is more unwelcome. I feel it like the contradiction pulling me down from the top of the roller coaster.

We pulled off a successful birthday party for me. Burt’s anxiety about it extended to the event itself when he took a long time preparing; once he showed up, he seemed in his social element. He called me out of the party before he was ready to participate to make sure I offered food and drink. Ever the thoughtful host.

The next day, he initiated a trip to a restaurant. This was only the fourth time we dined out since his diagnosis. He ordered scrambled eggs, mashed potatoes, and barely ate, but we had a pleasant time.

The walk to the restaurant, like our trip last weekend to a Starbucks, was challenging for Burt. He is always cold, and that was a factor in his complaint, as was wondering where we were headed and how much longer it would take.

Seeing him do so well and recognizing the impairment of his dementia are two thoughts I wish I didn’t have to juggle.

The confusion is real. The successes are real.

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