this is our life

Valentines

Speaking of the day of hearts and flowers, and I did mention it, this is another particularly difficult holiday.

It’s that love stuff that gets us.

Most of us have seen our marriages transformed by Lewy [or, really, any dementia]. Intimacy is not what it used to be.

Love, of course, is a resilient and enduring emotion. It takes hold of our hearts and souls as much as it does our bodies.

It’s likely that, after a number of years of caregiving, you and your beloved are not going out for a champagne dinner. Probably not even a beer or soda pop one.

Our corner pizza parlor is already decorated in anticipation of next Friday’s revelers. The Cafe down the block stands ready to deliver on its very French prix fixe in 3 courses and a toast.

It feels like everyone is going to hang with their special someone on the 14th. Cupid is armed and ready. We’re in a fomo mode.

We miss the closeness. We miss the romance. I miss the sentimental cards – usually 2 – from Burt. It’s just not our holiday anymore.

Speaking of gratitude

As I suggested to you, because it was suggested to me, it really helps us focus on the caring when we note at least one positive interaction with the one we love.

I dare say, this is true in civilian life also but for us who are caregivers, it’s a monumental help.

I had two dramatically beautiful positives to note in the past two weeks.

I will note that just the small improvement in Burt over the last few weeks was a positive as well. His increased awareness and engagement led to these lovely moments with me.

Feeling that I had been neglectful while preparing his breakfast and enjoying mine, I came into the bedroom. I took his hand and said «you put up with a lot from me and I appreciate it.« Burt did not skip a beat. Looking straight at me, he said «I appreciate you.«

That still brings tears to my eyes.

This week when I paused feeding him to say I love you, Burt extended his hands in a clap. It’s touching when a declaration of love gets applause.

Happy Valentine’s Day!

There are many small positives in our engagement with the ones we love we can applaud.

Burt is often funny. He loves to make a joke and will laugh at it heartily. These are day in, day out sweet exchanges we share.

As I document them here or in my journal, I am grateful.

The practice of care

Best practices include the care of our darlings but as caregivers we need to look out for ourselves.

Care for the caregiver includes respite, a topic dear to me and upon which I have expostulated at length.

Self-care can and should be done in the company of others. Spend time with friends.

I have lunch with various friends regularly. This is a great respite activity, but having visitors come to see us is also of benefit.

Support groups! Yes. I participate in a bunch. For LBD specific support there’s an online memo board through LBD Caring Spouses which is miraculously helpful. Much of my ideas for Best Practices came from that group.

Lewy Body Dementia Resource Center has a hotline and you can call to talk to a person who knows LBD. I also participate in a couple of their zoom meetings.

My support network extends to a wide circle. I meet with a group facilitated by the Social Worker at the neurologist’s office. I have also had one-on-one meetings with her.

Alzheimer’s Association has lots of groups, including one that gives me another creative outlet. Caregiver’s Expressions taps our writing skills to tackle the issues of caregiving.

I journal as well to document feelings and events. I blog here. The two (I guess 3) are different and similar.

I advise you to journal. Keep track of the daily changes. Most importantly, write one point of gratitude for each day. I attended a webinar that advised noting one positive interaction with your loved one each day.

It shines a light on your raison d’etre, your purpose in caregiving.

Best practices

One of my goals for this site is to offer guidance where I can.

I want to list some ideas and tips that I have found handy on our journey.

1. Burt had some trouble vis a vis food early on. It worried me. I was feeding him lots of lemon meeingue pie and eggs for a while.

Since I transitioned to puree, he gets variety, eats more, and eats better.

If he weren’t having trouble chewing and swallowing, I would not have brought in blenders. I am thrilled that I did.

2. Pills have been crushed for easier intake for a while.

To get those down, I was using conventional wisdom and mixing with applesauce.

Greater wisdom came from one of my support groups: applesauce gives the meds a bitterness. Use strawberry jam. Burt loves it.

3. Skin care is more of an issue for us since Burt has been in bed. We solved a problem of keeping Burt clean with a product called Tena 1-2-3. It’s a cream cleanser that doesn’t require water.

Now, we need to fight off sores. Burt’s doctor pointed me towards a cream that is very effective. Triad cream goes on smoothly and keeps troubled areas from bad breakouts. [Fingers crossed. Knock wood.]

The suggestion to turn him and change his position is basic. I bought an aid called SexySamba on Amazon to assist in turning.

Art for art’s sake

Squid Pro Quo is part of my respite care.

I participate in a program that uses art as a tool for connection. The respite for me has added value because the other artists are not caregivers. It’s more a general population (albeit all of us older adults) group.

It has been very soul-satisfying to me.

This craft project was done at Caregiver Appreciation Day. Also, a very satisfying afternoon.

Basic Burt

In the course of an hour or so, Burt was holding on tight to his aide’s hand. He took mine with his free hand and continued an elaborate explanation. His chat was freewheeling and pleasant.

He’s been sweet like this of late. No arguments or accusations.

This is Burt down to his basic self. He’s sentimental and caring. He says thank you quite often. For my part, I always respond with a “you’re welcome.”

He always liked his thank yous to be acknowledged.

Burt at his best self.

Neglect

Sometimes, it feels like I am so torn up over the national outrage as it swirls around that I am not paying enough attention to my guy.

Before you voice any alarm, know that I dearly love him. I will always tend to his needs. Love feeds and fuels me, so I am happy to report his increased engagement on that front.

Today, he asked his aide where his wifey was just after I stepped out of the room. I went and sat with him for a bit longer.

Better yet was a touching exchange we shared yesterday.

Feeling like I had ignored Burt while breakfasting and prepping his, I said You put up with a lot from me, and I appreciate that. Burt’s response brings tears. «I appreciate you,« he said.

My heart is full.

Lonely

Caregiving is lonely. I’m sure I have lamented this in numerous posts.

Burt seems like he’s pretty lonely, too. If you have a pwd, your person might also be feeling lonely.

I need to be a bit more hands-on empathetic. It’s hard to stick with him when he’s not making sense. He’s lonely even with the busy, crowded imagination he brings to the room.

Much of the time, he doesn’t rely on the real people around him for company. He turns to his hallucinations for conversation.

He has a delusion that I’m not here and a hallucination to replace me with Buddy or Betty.

For some reason, I am not upset that he doesn’t acknowledge me. It would make me happy if he knew just how loved he is. I want him to know that he is not alone.

Short bursts of energy

There’s a support group that «puts the I in caregiver« which I value for its honesty. It’s akin to the one urging us «to be selfish.«

I take about 5 hours for myself each day.

It’s a necessary indulgence.

Let me try to explain what my time away does to benefit me.

When I get to the gym, I have a chance to enjoy a physical outlet. The endorphins are helpful, I am told.

I meet friendly faces and chitchat about easy things.

If I go to a museum or grab lunch with friends, I can look to neutral subjects to distract.

From a wide range of these palate-cleansing activities, I come home calmer. And kinder.

Each day’s respite inspires my patience and clears my soul. It’s restorative.

It’s restorative in ways that loving my beloved can not be. That love is tinged with sorrow about his state; wishing he were otherwise accompanies the gratitude I have for the pleasure of caring for him.

It is a pleasure and a chore. The sorrow is tinged with love.

I take an art group or share in a support group. I complete tasks that need doing, too, and run errands. Or just go on a pleasant outing for myself. Some days have focus. Others give over to leisure.

I come back from my walk, ready to sit and listen with my fullest attention to stories whose words make no sense.

I have gained so much patience from time for relaxing activities.

I immerse myself in them. I crave and absorb their variety.

Then I come back to where I fully belong.

Alternate world

If you are living with a person with dementia and particularly this dementia, you know that your person spends much of his day in an alternate reality.

There are delusions and theories that give credence to and explain them.

Hallucinations are common occupants in the world of your loved one’s with LBD.

Burt’s hallucinatory companions may sometimes annoy him but are mostly harmless.

If your person doesn’t feel that his imaginings are threatening, just play along.

When, or rather if their presence causes worry or fear, banish them.

You are encouraged by all the dementia experts to use figures of authority in doing so.

“Oh no, honey, he won’t bother us anymore. Sheriff Doland chased him out of town.”

The habit of mind that has your beloved repeating questions will crop up here, too. His anxiety over that guy may need further assuaging.

Tell him again, but don’t let on that you told him before.