Memories
Burnout
It’s a topic of great interest to anyone who is caring for another human being.
Family caregivers have a dose of extra responsibility. There’s the physical caring, which seems like a lot.
It’s not all. We also make personal decisions about the healthcare of our loved ones. Financial decisions fall to us as, often, do the costs of care.
Burnout is on a long list of mustn’ts. It behooves us to stay positive; to stay healthy; to remain cheerful; and to continue with “self care.”
So we mustn’t harbor any negative thoughts or attitudes.
Mustn’t get ill.
Mustn’t take the smile off our face or out of our voice!
Mustn’t deny ourselves that moment of quiet or time for a manicure.
Of course, we expect the mustn’ts to add up so we won’t burn out.
Maybe we should just acknowledge that burnout and sadness are part of the experience.
This was my comment to my friend D.:
As for burnout, everyone advises self care. I say, “Yes, and with that, we still get burned out because this “labor of love” as you put is hard. It’s a lot, it’s work.” I think that reminding ourselves of love is a big component of self care.
And I think that congratulating ourselves on 😣 persevering can go a long way to mitigate the hard parts.
Myself
Acknowledging the challenges today brings can only help. For instance, today, it’s the physical needs of care that are hard for me.
Tomorrow, it might be the emotional or a complicated mixture of things. I will find a way to cope. And I will let love lead.
A surprise party
What was I thinking? Honestly, I had trepidations. This could go either way. Or in any direction.
A party could be too much for him. It could be confusing to meet so many people. It could be overwhelming or an unwelcome surprise.
My Burt is a very social guy. He’s made lots of friends in our building. He is sometimes direct and confrontational, but he loves to engage and interact with people.
For his 84th birthday, I wanted to combine my plan to offer him activities and company with a celebration of his special day.
We started slow with a ‘pop-in’ visit from a dear friend of mine. She came bearing flowers for him. He was charmed.
It wasn’t a party yet. Our doorman and friend came up with a card and a greeting. They chatted.
After an interval and when he was expecting his speech therapist, an old friend came in. She had been our neighbor in the “old apartment,” and he remembered.
Then, people began to show up in earnest. I couldn’t tell, even after M. sang the birthday song if he knew it was his party.
Apparently, he did. When the crowd cleared, he thanked me for making his life exciting.
His whole-hearted appreciation was wonderful. His joy at the attention was great, too.
Although I thought he seemed a bit confused during the event, he was a tad sharper after it.
I guess that’s what I was thinking!
Feels like a job
It’s a new revelation at my end of the caring experience.
I started thinking of my often funny, sometimes difficult honey of a man as a job. I hate myself for that, but there it is. He is work.
Many of us thrust into this kind of role feel unqualified. I am ill-suited to be nursing my spouse. At this point in our journey, he does not yet need a nurse. Yet there are many demands I am required to fulfill.
I don’t want to turn this into a pity party. Before we say poor Tamara, I have to say that much as I miss my healthy Burt, I still enjoy and love the one I’m living with now.
Partners
The loss of a partner is a difficult loss. When your love has dementia the loss is kind of on-going.
He can’t provide the support he once did. He can’t be the partner he wants to be. Burt is constantly saying “if you have a problem, come to me.” He is sincere, but he can’t be of any real help.
He wants to be chivalrous. “If anyone gives you any trouble, I’ll take care of it. I’ll tell them off, in a nice way,” he says. This display of chivalry is just one clue as to how little he can do. It’s sweet. And comical. And sad.
Today I am mourning this loss in the strangest context.
It’s time to set back our clocks. This would be a joint project spearheaded by him. I am stressing over the loss of an hour (or is it a gain?) (Or does it not matter)?
Time is something that has slipped by him so I am very time-sensitive.
He has trouble telling time on his beautiful watch. Time has little sense in his world these days. He wonders why we can’t watch an 8pm TV show at 9. To him there is no illogic in this question.
Day and night were a bigger jumble earlier in his disease. That confusion led to sleepless nights. We have so much of it straightened out now. And yet, the loss is so present.
Setting back the clocks tonight, there’s a timely reminder.
One day at a time
This cliche of better living is a caveat not just for members of the 12-step community but for anyone wishing to enjoy a more balanced life. Ironically, it is in the throes of my husband’s difficult diagnosis that I found a way towards “living in the moment.”
At first, I was thrown by every change and new development. “Oh no, is this what our life will now be!” I came to realize soon enough that change is the Lewy signature.
Today, my love might be restless and disagreeable. By noon, all that might change. Sometimes, the change will be an improvement, and sometimes not. Things won’t stay the same for long.
Dealing with and anticipating that things will be different is my way of living in our moment. I take Burt’s moods, needs, and expectations minute by minute. One day at a time gets broken up into the little fractions of 24 hours.
Often, this is surprisingly pleasant, if a tad stressful.
Planning, while necessary, doesn’t allow me to fully understand what’s next. I am immersed in our present.
Every day is a new day.
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.
this is our life 