Isolation of Dementia Caregiving

She sits by the window face to the street, hoping the grocery delivery will arrive soon. She secretly wishes the courier stays and chats for a few minutes. It's been months since she's had friends or visitors over to the house. The weekly deliveries are her only human connection from outside her home.

She is feeling all alone.

Her spouse sits close by, seemingly unaware of her presence in the room. He is watching a show on television. She gets up from the window to use the restroom, but her husband cries out as she walks by him, "Come back, come back. Don't leave me. Please don't leave me." She knows of his severe anxiety. She must help him feel comfortable for a moment.

At the outburst, she reassures him she will be back, quietly explaining where she needs to go. She knows he may not understand. She has learned to be patient. "I'll be back in just a moment," she explains, "I'll bring you a treat when I return."

Her husband is in the house with her, but she feels very alone. His dementia has reached a stage where outsiders are seen as threats and delusions creep in.

Maya Angelou's poem titled "Alone" brings some sense to why isolation is so challenging.

"Alone

Lying, thinking Last night How to find my soul a home Where water is not thirsty And bread loaf is not stone

I came up with one thing And I don't believe I'm wrong That nobody, But nobody Can make it out here alone.

Alone, all alone Nobody, but nobody Can make it out here alone.

There are some millionaires With money they can't use Their wives run 'round like banshees Their children sing the blues They've got expensive doctors To cure their hearts of stone. But nobody No, nobody Can make it out here alone.

Alone, all alone Nobody, but nobody Can make it out here alone.

Now if you listen closely I'll tell you what I know Storm clouds are gathering The wind is gonna blow The race of man is suffering And I can hear the moan, 'Cause nobody, But nobody Can make it out here alone.

Alone, all alone Nobody, but nobody Can make it out here alone."

From Oh Pray My Wings Are Gonna Fit Me Well By Maya Angelou. Copyright © 1975 by Maya Angelou. Reprinted with permission of Random House, Inc.

Many caregivers feel alone. They may have the impression that no one can assist. The thought, "If I don't do this, who will?" is common among caregivers. Such ideas are isolating and not factual. The negative stigma of dementia is a reality.

Seeking help from others is not a weakness. It is a resourceful way to gain resilience in the face of an unknown future. Dementia is a degenerative disease that has no timeline. People appreciate the opportunity to be of support. Don't fear letting others know about a loved one's dementia diagnosis.

Here are some ideas for creating positive experiences when people come by:

• Have magazines, photos, and books in a basket for them to share with the person you're caring for. You most likely know their preferences, so try gearing interactions around them.

• Try playing a few different song genres from your early days and see if there is a connection for your loved one. You may be surprised when they start humming or singing along. One son brought in an old recording of his mother singing in a quartet. Her eyes lit up when he played it for her.

• Take a "scenic drive" using the internet. Search for videos of scenic drives on Google or YouTube. Be sure there aren't any scenes that could be disturbing. I've used 4K Relaxation in the past. The producers videotape beautiful drives along scenic roadways all over the world. Talk about some of your favorite scenic drives.

• You can also peruse a photo album and recount the great memories you've shared. It's advisable to narrate the picture rather than say, "Do you remember when...?" Always allow the other person to share their recollection if possible. They may not be like your memories, but that's fine. Dementia can confuse people's memories, be flexible.
  

Another way to not feel so alone is to talk to supportive friends and family members. Calling, texting and video chats work well when it isn't possible to speak face-to-face. You should be honest with your family and let them know your needs. They may devise solutions you hadn't thought of and possibly provide a few hours of care. It is the little things you'll find immeasurably valuable. Try playing a few different song genres from your early days and see if there is a connection for your loved one. You may be surprised when they start humming or singing along. One son brought in an old recording of his mother singing in a quartet. Her eyes lit up when he played it for her.

Making new friends can also be beneficial. Online support groups are a great way to find friendships with those in similar situations. Community centers may offer respite care, support groups and classes, too. Contacting your local senior citizen center is another good resource. Many have programs for your loved one too.

A quality life is open to the support of others. We build connections that support resiliency by bringing other reliable people into our lives. There is a richness to saliency. I hope you'll pick up the phone when you need encouragement. If you need more help, let's chat. You do not need to be alone in your journey with dementia.