Independence comes in many forms for Alzheimer’s caregivers

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There are times when we crave time to ourselves. We need our independence — to decide whether we want to be alone or be with others.

Your loved one has Alzheimer’s disease and it’s like robbers are stealing her identity — her voice  — piece by piece. The silence becomes deafening for a caregiver who desperately wants to share conversation, movies or music. When you want it least, you have independence — solitude. Maybe even to the point of isolation.

In the midst of months – maybe years – of daily responsibilities, caregivers need time to reconnect with people who have been important in their lives or need time to be alone. The Fourth of July is when many come together for cookouts, maybe enjoy a lake breeze and top off the day with fireworks. Hopefully you can include your caregiver friends in your Independence Day plans, or offer to spend time with a person who lives with dementia so the caregiver may take time for him/herself.

Enjoy a safe and happy July 4th.

 

#AlzCaregiving#

 

Alzheimer’s caregiving: Never let “perfect” be the enemy of “good”

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For me, the headline sums up one of the big challenges of Alzheimer’s caregiving: you think you have to do the job flawlessly.

If you have a Type-A personality, you’re always trying to be perfect. As my Alzheimer’s Association counselor says, you’re uptight until it’s just right.

You might be trying to keep Mom’s house as neat-as-a-pin as she did before she was diagnosed with Alzheimer’s. Maybe you want to make all of your husband’s favorite meals, even when you don’t always have time to cook from scratch. No matter how hard you try, it seems there are never enough hours in the day to do things the way they “should” be done. You feel like a failure.

If you can, try to let go of your guilt. Weigh your aspirations versus your ability to provide a picture-perfect home. Maybe a tidy house isn’t so important today. Maybe your wife would be happier if you took a walk with her instead of making a time-consuming dinner. Try to find the sweet spot.

Sometimes good is good enough.

— #AlzCaregiving —

When a loved one has Alzheimer’s, is it worth visiting?

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As Elaine’s Alzheimer’s has progressed, her world has become smaller and smaller. Before Alzheimer’s, Elaine was a voracious reader and lively conversationalist; my Second Elaine is neither of those things. She used to enjoy going to plays and performances, and loved putting together photo albums; my Second Elaine does none of that.

When thinking about the world of a person with dementia, I often use the analogy of an inverted funnel. Someone with a healthy brain can put the narrow end of a funnel up to their eye and look up, viewing the world through the large end of the funnel. You see the blueness of the sky and the hope of tomorrow. A person with dementia, meanwhile, experiences that funnel flipping around – he or she is now looking through the wide end of the funnel and sees only what is visible through the narrow end.

Someone in the late stages of Alzheimer’s does not care or understand what happened five minutes ago. They don’t care or understand what’s going to happen five minutes from now.

A fellow caregiver recently posed an interesting question during one of our presentations. Given the limited understanding of a person with dementia, he asked, is it even worthwhile to go out to dinner, listen to music, take a walk?

My answer is, yes – absolutely! What else can I give my wife besides the “right now” kind of happiness? Watch for what kinds of things bring a smile to your loved one’s face. Maybe it’s a dish of ice cream, a car ride or coloring a picture. For us, oftentimes it’s looking at the trees that shade the courtyard of her memory care assisted living facility. I don’t think Elaine could enjoy the view any more if we were looking out at the Swiss Alps. I aim to create moments of joy. It’s worth it, even when those moments are fleeting.

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Alzheimer’s taught me anticipatory grief

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I used to think there was one kind of grief: the kind a person experiences when a loved one passes away. Now I know better.

As an Alzheimer’s caregiver for more than 10 years, I’ve learned about “anticipatory grief.” It’s that sadness you feel when you know a loss is coming. Most times, it’s associated with the loss of experiences. Early in Elaine’s illness, I couldn’t help but think of all the shared events we would miss – a European vacation, anniversary celebrations, our grandchildrens’ graduations and weddings. I’ve called Alzheimer’s disease “death by a thousand cuts,” which makes anticipatory grief something caregivers live with for several years.

Elaine and Marty Schreiber (front) enjoy support from their family.

Elaine, pictured earlier in her Alzheimer’s diagnosis, and Marty Schreiber, enjoy a supportive family.

At this point in my wife’s Alzheimer’s, anticipatory grief is giving way to what I’ve heard called “unconventional grief,” that is, grieving someone who is still alive. I’m grieving for the loss of a person. My First Elaine is gone; she is still here in terms of a physical body, but in essence, she has left this world. I’m a widower who still has a wife, and there was no funeral to help me process this loss. I work through my grief every single day.

I’ve come to appreciate how far we’ve come to understand grief and grieving through time. Thank heaven we no longer follow Victorian era practices, with widows expected to dress in mourning clothing for two years.

To cope as an Alzheimer’s caregiver, you must give yourself permission to grieve. Surviving the experience may come in different ways, at different times. Seek others to talk to who are in the same situation. Get counseling at the Alzheimer’s Association. Be open to finding joy in your Second Elaine. Accept that you deserve to find joy in life, period.

If you know an Alzheimer’s caregiver, try to understand that your friend or relative’s emotions are in turmoil. Acknowledge the pain the caregiver is experiencing. Talk about the good times. Try to be a good listener.

Grieving is an ongoing process, not a limited-time event, especially when it comes to Alzheimer’s disease.

Thank you to the American Academy of Bereavement for providing helpful suggestions.

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Who Is This Book For?

- Spouses and partners of persons with Alzheimer’s
- Children of persons with Alzheimer’s
- Extended family and friends of persons with Alzheimer’s
- Extended family and friends of caregivers
- Professional caregivers for persons with Alzheimer’s
- Others who come in contact with caregivers and persons with Alzheimer’s, including: nurses, social workers, clergy, elder law attorneys, estate planning attorneys, financial advisers, human resources directors, employers, supervisors and co-workers.

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