Tag Archives: well

Send in the Butterflies

Back when my Mama was in the early stages of dementia, we tried to help her be as active as possible by taking walks, eating at restaurants and walking laps at a local gym that has an indoor pfinishing-well-in-life-butterflies_1ool.

In the course of these outings, we naturally came across folks who didn’t know that she had dementia. Since Mama was very social and friendly, she would often initiate a conversation with someone. It usually didn’t take too long before the other person would begin to suspect that the nice lady they were chatting with was not functioning at 100 %. Sometimes it was a bit of a dilemma; we didn’t want to dishonor Mama by talking about her as if she wasn’t there, but at the same time, we needed to clue them into what was going on.

We would try to catch the person’s eye and mouth the word dementia’.  A puzzled expression was quickly replaced by a smile and nod as understanding dawned.

A couple of recent articles has proposed excellent solutions for those ‘awkward moments’.

The first one tells about a using a card the size of a busfinishing-well-in-life-butterflies_2iness card to relay the information: New ‘purple card’ system would help people with dementia 

Madeleine Fraley’s husband has dementia, so she created a simple card explaining the situation that she could discretely hand to someone. The purple-hued card  states, “My companion has memory problems. Please be patient. Thank you!” 

What a brilliant idea! That would have been quite useful to have on our outings.

The other clever idea is really more for a hospital or medical situation. They are using butterflies to help ifinishing-well-in-life-butterflies_3dentify patients who are suffering from dementia. The butterfly symbol is stamped on everything associated with the patient. Staff is trained  to keep an eye out for the symbol so they can support and treat the patients appropriately.

Francesca Hall, the hospital’s dementia champion states, “It’s vital that people know that a patient has dementia so they can treat and support that person appropriately to ensure the best care possible.

The important thing here is to keep your loved one as active and social as possible while continuing to treat them with dignity and honor.

Only the Lonely

I was visiting with a friend today. It turns out that his dad has dementia, and he was grieving about a very painful part of reality called loneliness when it comes to folks afflicted with this condition. Not only is it “The long goodbye”, but too often it also a “Journey of lonesomeness”.

Unfortunately, their forgetfulness tends to cause friends and family to forget about them. Not in the cold, unfeeling or hateful way. No! Rather in more of the “I don’t know what to sayway, or the “Why go? They won’t even know I’m thereway, or the “It’s too sad or depressing to see them in that situationway.

My heartbroken friend went on to say that it didn’t seem to matter what his father had achieved or accomplished, who he’d helped or the man he was, once dementia crept in and took over everything changed. Colleagues, friends, and even family began to avoid him.

He’s not the only one who has mentioned it. It seems to be a common complaint among caregivers.  At times, those who care for others begin to feel that they alone are shouldering the burden of care. Why is that?

I believe it’s because folks might feel unqualified, uncertain or afraid they might say the wrong thing. People honestly don’t know what to say. Or if their person is suffering from dementia, they won’t remember the visit. And, it can be a sad thing to see someone who was once vibrant and full of life to become frail and feeble.

Perhaps what is needed is a bit of coaching ahead of time to help folks know all that’s really needed is a smile, a touch, and a kind voice.

It really doesn’t matter what you say. Simply entering the room with a smile and taking their hand can create a connection. As far as what to say, try reciting scripture, reading poetry or the newspaper. Perhaps picking up a novel you were interested in and reading a few chapters each visit. Sing a few songs or use  youtube.com  on your phone/tablet to play some songs from when they were younger.

If eating is allowed, bring a special treat (definitely check with the caregiver first).  Allow your person to live in the past if that is where they are. A story listened to even if it’s repeated over and over can be considered conversation.

Yes, it can be depressing to see someone in that setting, but perhaps your visit can bring a bit of joy and create a connection that may just improve the quality of life for both of you.

Please share any other helpful tools and tips can be offered to those who have found themselves avoiding visits.

Sing, sing, singing the blues away

Are you feeling blue? Overwhelmed? Take heart – or take up singing.

The almost magical affect music has on those suffering from dementia are well established, but what about those who care for them?

Here’s some good news: I just read about a study that showed a wonderful side-benefit to music therapy. It seems that it does more than enhance the quality of life of dementia patients – it also appears to improve the mood and emotions of caregivers.

Another surprise, according to this five-month study conducted in the UK, was that the benefit lasted well after the trial ended, measurements taken two months later showing continued improvement.

Music is the language of the soul. It appears to enter the brain differently than words alone or other noise. To gain the most benefit from musical therapy, it is important to be engaged in the music somehow, rather than just having it play in the background.

A few ways to really engage are:

Singing, humming or whistling is the best way to connect to the music. Also, the use of headphones can be helpful as well as viewing a music video. The most effective songs seem to be the tunes from a persons ‘formative years’. For my Mama, who was born in 1931, the top hits of the 1940s as well as hymns had the most impact on her. A variety of online sites such as www.youtube.com  can provide easy access to a variety of music videos.

Not sure what music is best? Try a song and watch for a positive reaction. Develop a playlist. If it turns out that the list is short, it is okay. If someone has dementia, songs can be played over and over again as long as they are helpful to the listener.

Have you noticed this to be true in your experience?

Sometimes, the journey is long….

Caring for you loved one can be a mix of joy, duty, exhaustion, determination, honor, love and tears.

What is your story? Who are you caring for? What are some of your coping strategies? Who helps you? Why do you keep going? How do you find respite?

Please share any ideas, tips, helps and wisdom with others who are walking down this road.

I remember one particularly difficult day. I was so exhausted – Mama needed so much care. I thought about the promise I made to Daddy right before he passed away. I told him he wouldn’t have to worry, that I would take care of Mama. But right then, at that moment, in the middle of my tired I wasn’t sure how much longer I could go on. I cried out to the Lord and asked Him to help me finish well.

His answer came by providing a variety of help day by day as we continued the journey. The biggest answer was that no one can do this alone. Family, friends, agencies and yes, Blog posts and comments are ways to get help, help others and find coping strategies to continue walking day by day.