How do you know when it’s really time to go?

By Wendy Johnstone
December 10, 2009

“I’m among the forgetters. But I’m not an empty shell”.
Richard Taylor, author of Alzheimer’s from the INSIDE OUT

Do you remember the first time you stepped into a residential care facility (or in my day, we referred to them as nursing homes, old folk’s homes or lodges)? Was it positive or negative for you? What made your visit to a long term care facility positive or negative?

I was about six years old when I remember visiting a nursing home. We drove on Christmas day to visit with our elderly neighbours, the Coppers, who had move into a nursing home in North Toronto the year before. I consciously tried not to scrunch my nose as the pungent odours reached my nostrils. I felt complete terror as residents lurched out to touch me or grab my hand. I was shocked at the number of residents I saw bound to their wheelchairs, some drooling from their mouths. I felt uncertain and unprepared as we entered the Copper’s room, where Mrs. Copper sat in her wheelchair and Mr. Copper lay in his bed, affected by a stroke.

Gingerly, I approached the bed to see Mr. Copper and immediately felt relief and happiness when he smiled at me lopsidedly, but with the same twinkle in his eye I came to expect. When I heard the familiarity of Mrs. Copper’s voice and the warmth of her hands, it made my heart leap for joy. I forgot about their diseases, his stroke and her inability to walk due to Parkinson’s Disease. The strangeness of being in a nursing home evaporated. They were the same people who lived across the street from me on Waverley Road. They were the Coppers!

I learned how easy it was for me, an overly exuberant six year old to bring unmitigated joy and happiness to her grandfriends. We brought school art to brag about and hang up on the walls, pictures to flip through, easy memory games to play and card games like Fish. We took liberties in showing new found skills like dance routines, singing Christmas Carols and colouring pictures with fancy markers. We brought special treats like expensive chocolates, hand lotion, homemade Christmas ornaments, gingerbread folk and a pair of new warm wool slippers.

Before I knew it, it was time to go and I felt a little tug at my heart as I waved good-bye, skipping down the hallway. I remember asking my Mom when we could come back to the “Copper’s New and Neat Home”.

The joy that accompanies the holidays can often feel absent from the halls of a residential care facility or in a widowed grandparent’s home. Our aging loved ones can often feel more lonely or isolated as a result of changes in their senses, memory loss, illness or a loss of mobility.

Bringing your children to visit with grandparents, regardless of where, is a guaranteed way to lift spirits especially during this time of year.

It can also be stressful. You might be wondering how to include a grandparent with Alzheimer’s, one who had a stroke, one who is frail or one who has mobility challenges? What do you say to someone who has Alzheimer’s?

Communication with an individual faced with an impairment or challenge (visual, speech , hearing and cognitive requires us to:

BELIEVE that each person, regardless of age and disability, maintains a core self that can be reached

BE CREATIVE in expressing our feelings and message

UNDERSTAND the effects of disease on communication

PRACTICE PATIENCE by slowing down, listening, watching, waiting for responses and repeating a phrase using similar or slightly different words

STRIVE TOWARDS PERFECTION in how we convey our messages and feelings effectively.

Giving the gift of time and sharing the joy of our children matters more than what is said or understood. Do your homework. The more you know about the physical and mental condition of your aging loved one, the more comfortable you’ll feel. The more you can prepare your children for a visit too.

When I take Carly in for a visit to our local residential care facility, she will often ask why someone doesn’t walk. I do my best to keep it simple and say something along the lines of, “Mrs. Smith has a disease called Alzheimer’s Disease. It affects her brain. Her brain can no longer tell her legs to walk, so she needs to use a wheelchair. You won’t catch Alzheimer’s Disease during our visit”.

We also talk about the smells, sights and sounds that we might encounter. For example, I might say, “You may smell the chemicals used for cleaning”, “You may see someone wearing a seatbelt in the wheelchair to keep them safe, just like buckling up in your stroller or car seat”, or “Try not to be frightened when you hear someone shout or scream. Some older people can’t help yelling just like you can’t help sneezing.“

If a grandparent has had a stroke, or has some form of dementia, be prepared for potentially embarrassing or unusual behaviour, as the person may be confused and won’t remember what is polite or expected. Remember that the disease can cause challenging behaviour, be objective and try not to take criticisms or accusations personally.

Other helpful hints:

• Always speak face to face, not from behind,

• Get the person’s attention first by a gentle touch, wave, or calling their name,

• Remember that you are taller than a person in a wheelchair. Bend down to their eye level before talking,

• As your loved one if they need assistance before doing something for them. Don’t be offended if they don’t take you up on your offer to help,

• Ask HOW you can help and LISTEN for instructions,

• During conversation, minimize or eliminate background noise, such as radio, television, other people, etc.,

• If it’s difficult for your loved one to communicate, use all modes of communication – writing, drawing, yes/no, eye contact, facial expressions, etc.),

• Don’t hide your mouth and don’t shout, and

• If you are communicating with a loved one with cognitive impairment, keep your message simple and only give one message at a time.

Creating Memorable Visits

The most positive visits between grandparents and grandchildren are those that create interaction and are built around shared experiences that both the older person and child can enjoy.

• Emphasize one-to-one or small group interaction

• Provide a shared experience such as petting a dog, looking at photos, making a scrapbook, baking cookies, playing a game, playing with puppets, enjoying music, going for a walk, telling stories about the past, bringing in your laptop and playing slideshows or watching home-made videos

• Recognize the frail elders’ limitations (if any). Short, frequent visits are often better than long, infrequent visits

• Allow the grandparent to say when he or she prefers to visit or to decline visits

• Remember the importance of the five senses, especially taste, touch and music. It can be wonderful for a frail elder and a child to share a homemade snack such as a smoothie, a hot chocolate or a cookie. A gentle hug, a handshake or an arm around the shoulder brings human touch to the surface. A singing voice or sharing a familiar song can also bring pleasant memories.

Helpful Videos

Watch for the Signs

Caregiver Consultations: How We Help Frail Elderly Parents

Long Distance Caregiving

“You are amazing! What I tried to do in 2 months, you did in 1 week. You’ve helped us navigate the system, made sense of Mom’s disease, and gave back her independence and control. Thank you for making such a difference in Mom’s life and giving us, her family, complete peace of mind.”

– Mike G., Nanaimo, BC

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