Caring for a loved one living with Alzheimer's
Nathalie Brown shares her personal experience of caring for her mother who lived with Alzheimer's. She also shares some tips to help other carers.
“You’d do anything for your parents, but no one can prepare you for how tough it can be caring for someone you love who has Alzheimer's. But there are many moments in day when you hear them laughing, receive spontaneous cuddles and see the happy sparkle back in their eyes, that make everything you do so very worthwhile.” Nathalie Brown
I was dressing her. A daily routine that couldn't be rushed. I'd learnt to no longer plead with a "please hurry up." My inner dialogue pushed the rising frustration away; constantly replacing it with bucket-loads of patience. Remaining calm and the go-slow approach was the key to the completion of any task.
Getting dressed every morning, in the same order didn't trigger any recollection of what would happen next. Repetition no longer created a memory of what to do. Regular day to day rituals became brief moments of relearning the basics, never stored for the next day. Groundhog days over and over.
"Arms up, I'm going to pull the jumper over your head," I’d say. She smiled. “Nice colour top, is that for me?” Her arms stayed unmoved. I gently guided them in. Mission putting on a top was accomplished. "Well done, nearly there I just need your socks and shoes on."
She sat on the edge of the bed. I knelt down for the final stage. I showed her the shoes and socks, a visual prompt reinforced with words explaining what was going to happen next. "Lift this foot up" I touched her left foot. It remained firmly planted. Repeating myself would be futile, my words were meaningless.
Putting on socks and shoes on feet that refuse to lift off the floor required tactics; tickling her feet and wriggling her toes was a one such move. Alongside singing, this little piggie went to market, and this little piggie stayed at home and finally the socks were on.
The red shoes she loves to wear were in my hands, the finale was edging closer. "I'm putting your red shoes on now," I say. She pushed me away shoving her feet and hitting my stomach. Her face lost its softness and reddened in an instant; the anger was quick to rise. No warning bells. Happy to angry: in under a nano second.
"Urgh I hate those shoes and I'm not wearing them!" she says. “No, these are your favourite shoes”, shouts the voice inside of me. Take a breath. Don't fight this battle. Arguing is futile. Give her your biggest smile, put on your upbeat tone, move through this. Dig deep, don’t stumble or give up. Remember it is not her fault.
"Silly me, I chose the wrong shoes. Let's see where the ones you like are," I say.
I grab a variety of shoes from the wardrobe and make my way back to the bed. I begin to sing. Singing brings her happy back. Together we sing a Spanish nursery rhyme about a cat on the roof.
Choosing the shoes, takes a while. Painstakingly slow. I breathe in. Her anger dissipates as we sing. "I don't think I like any of these shoes, can we can go and buy new ones?" she says.
Making a mental note to take her shoe shopping, I wonder if she will recall this conversation. "Of course we can, but you'll need to wear shoes to go to the shops."
Kneeling down, I look up and ask her which shoes would you like to wear to the shops. A baffling expression on her face appears "My favourite ones, you know the red ones I always wear."
Another deep breath; the red shoes it is then. The ones she had detested five minutes ago are now on her feet.
Sitting beside her, brushing her hair and she turns to face me, her hands cup my face, she leans in and kisses my forehead.
Her voice is soft and loving. “I know you don’t I?”
“Yes, you do, I’m here all the time, everyday. You live here, with my husband and my children; who love you very much and you love them. Do you remember?”
I reach over to the bedside table, pick up the journal I complete daily and turn to what we did yesterday. The day documented into sections with photos and notes of what she did. I point to the photo of her, with my son and daughter giving her kisses.
“Look who is that pretty lady there in the photo?”
“That’s me of course. When did you take this photo?”
“That was taken yesterday in the garden, remember I painted your nails pink, we watched the children play and you won Bingo, this is them congratulating you with kisses.”
She looks at her nails and the photos, concentrating trying to connect the dots.
“I remember who you are.”
My hearts swells on hearing that she recalls who I am. A fleeting moment, a brief connection as my mother recognizes me as her daughter.
We are both happy now.
“You are my mum. I love you mum.” She says.
Kissing her cheek, saying, “I love you too.”
Our roles have changed. I am her mother now. It hurts, I’m angry and I want my mum back.
Learning to live with Alzheimer’s is a life changing role.
Nathalie’s tips to help others caring for a loved one living with Alzheimer’s
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- Establish a good routine and choose the best time of the day for each task.
- Allocate extra time for all tasks. Don't rush tasks like dressing, bathing or eating.
- Put photos up in their room of family and friends and write who they are by the photo.
- Keep a daily journal with photos of what they've done each day.
- Find a social group they can attend at least once a week.
- Play simple board games like Bingo.
- Read with them or go through magazines together.
- Play their favourite music.
- Watch old movies together.
- Don't take their mood personally.
- Consider a support group where you can talk to others who understand. Bupa's Aged Care Support Line can help you find support near you and offer other information and tips for your personal circumstances.