Often family members visit a loved one with a dementia-related disease for weekly, bi-weekly or monthly visits. Some visit more than once or twice a week, but these same family members will tell me that they find it a challenge finding an activity that they can share. I remind them that it is not the activity, itself, but the time shared together that matters. Our loved one is still worthy; our loved one still matters.
Restlessness or anxiety is a common trait of persons who have Alzheimer’s or another dementia-related disease. Because exhausted caregivers are often too worn out to create new activities to distract their loved ones they often resort to turning on the television. Those of us who have cared for someone quickly realize that the television is not the answer. Unfortunately we learn through trial and error that the television programs can spark other symptoms, such as hallucinations or illusions. Worse, delusions.
Others, when faced with a loved one who has Alzheimer’s, begin to withdraw – they no longer visit their loved one because it has become too stressful. They convince themselves that the person with Alzheimer’s (or a dementia-related disease) is no longer cognitively aware; therefore, they reason why visit?
Since I have journeyed with both my father and my mother who had Alzheimer’s, I fully understand how these feelings and thoughts arise. But I have also experienced acceptance of the disease, and with acceptance, kindness, compassion and love follow.
Spending time with your loved one is one of the best ways to learn to accept this disease. Try to visit with the intention of “seeing” your loved one as she/he is in the present moment. Let go of the past (and your thoughts about how shitty this disease is, how your loved one is no longer the person that she/he once was, how much you resent or feel guilt) and just visit with this intention: I am doing the best that I can. Let go of thoughts about the future (what will happen when she/he dies, how much longer will this go on, what will happen to my health if I continue down this road). Stay in the present.
Acceptance takes practice. One must have awareness first of our emotions. Don’t shove them down. Accept them. And forgive yourself for them. It is human to feel resentment, anger or guilt when dealing with disease. (Thank you, Dr. Robert Buckman, I Don’t Know What To Say…, for this valuable insight.)
Once we acknowledge this fact – that it is human to feel negative emotions – then we can turn our attention to releasing them. Wherever we turn our attention (awareness), energy follows.
When I used to visit my mother in the long-term care facility where she lived the last two and a half years, I parked the car and sat for a few minutes. I would close my eyes and intend that my visit would go well and that I would only bring my loving energy into her room; I parked the negative energy in the car.
Here is my intention (or prayer):
Let me only enter with love. Let me greet my mother with love, compassion and joy. No matter her mood or the events that she will tell me, I will stay in a state of acceptance. I am not here to cure her or fix her. I will visit and do the best that I can. And I accept that. No matter what, she is here. I accept that, too.
Through my own experiences and through talking with others, I have compiled a list of activities or tips to help distract a person whose symptoms are causing restlessness, anxiety, frustration, agitation or irritability. None of these suggestions will work all of the time; some of them work for a short period of time and then other activities need to be introduced. Sometimes we adapt or tweak an activity and that makes all the difference.
And sometimes an activity is not the answer to restlessness, but that stillness or calmness is. Learn to declutter and simplify your loved one’s surroundings. Over-stimulation, whether it is a messy room or too many people chattering, can arouse anxiety in someone with a dementia. And some carers believe that over-stimulation and change can cause Sundowners Syndrome.
When someone becomes restless or anxious, distraction can be an antidote. Often I would take my mother’s hand and suggest that we look through her photo albums or rummage through a box filled with family photos. This was an activity that she particularly loved to do and if I sat beside her and listened to her stories, that was double the pleasure. (Tip: no matter what story you hear, do not correct their version)
When the experts tell us that the part of the brain that stores old memories is often one of the last to deteriorate and that those memories often stay intact until near the end stage of Alzheimer’s, we can understand why our loved ones enjoy visiting the past – old family photos, reminiscing about old stories, old home movies, music and songs from their childhood or young adult life (or songs from the war) – these all make for an enjoyable pastime. And I am convinced that these activities allow for our loved ones with dementia to shine again. On a daily basis they are bombarded with things that they no longer can remember how to do and reminders of loss and failure; therefore, why not give our loved ones an opportunity to remember happier days – days when they were full of life and passion, days when they were not dependent on others. Reminiscing about the past, listening to your loved one’s stories, and looking at old photographs fill a vital need.
Finding activities or hobbies that suit the person with a dementia is not a one-size-fits-all solution. A little detective work might help, as you might want to explore a variety of activities.
For example, your loved one might have enjoyed photography as a life-time hobby. Understandably, he might not be able to remember how the camera works, and his lack (loss) of fine motor skills might impede how he holds the camera and focuses on a subject. But the person might still enjoy photography books; or a small camera, or two, could be placed in a box as a worthwhile activity – a caregiver could initiate a conversation about photography with the person, as he holds the camera and touches the different components.
My mother was a clean freak when she was younger and we teased her that her laundry was folded as if she was still in the army. Well, those habits did not fail her when she became an older woman with Alzheimer’s. Personal care workers would tell us that my mother would make her own bed every morning, and that the bed would be wrinkle-free and perfect. (And yet she could not walk without two people supporting her. Figure that.)
When the laundry was returned to her room, I would take everything off the hangers and give them to my mother to re-fold. She would concentrate on folding a sweater and even if it took her many minutes, she would not give up. When I would lean in to help her, she would insist that it was her job, not mine. I could do it quicker and neater, but it allowed my mother dignity and purpose and it became an activity that she enjoyed during my visits.
Another activity she liked was to sit with her jewellery box on the bed where she would lovingly handle each of the pieces of costume jewellery. She would pick up a piece and tell me its story. “You gave me this necklace one Christmas when you were ten years old. You told me it was the most beautiful thing ever.” I would stare at the yellow beads, and wonder if she was confused with my sister’s or aunt’s gifts. I could not remember buying it, nor did I even like it. Yellow is not my favourite colour. But I enjoyed watching her face light up with joy as she remembered these stories. And I especially enjoyed her stories. (Sometimes she got her stories mixed up and the decades ran into each other.)
We might read stories or poetry to someone with a dementia, or we might play music from the early eras. Reading aloud or listening to music is extremely calming and tranquil. Studies have shown both are used in therapy and have good results. Again, music from the past awakens the part of the brain that is not as damaged as others…it becomes a pleasurable and joyful experience for persons with dementia, and, of course, it is extremely restful. This is particularly a good idea for grandchildren who visit. Young people can read their favourite books or magazines to their grandparent. (Remember: it’s about the energy we create, not the content of the pages.)
My friend visits her mother who has Alzheimer’s and sadly, her mother does not recognize her, but they still enjoy hours of singing songs together, and spending time together, holding hands. Christmas carols and hymns are special favorites, she tells me. When my friend recounts her visits, I can see the joy on my friend’s face. She has truly parked all those emotions, including her sorrow now that her mother does not recognize her; yet she visits as often as she can, with love in her heart.
There was a large cork bulletin board in my mother’s room at the long-term care facility, and we pinned all of the greeting cards that she received onto it. When she became too anxious or upset, I would announce to her that it was time to re-arrange her bulletin board. Then I would take everything off the board, lay the items on her bed, and she would look at each card or token (butterflies, autumn leaves, pictures) carefully. I would ask her where we might re-pin the cards on the board. According to her, everything should be hung low on the board so that she could look at them when she was in her wheelchair. (So clever, I would think.) Sometimes I would visit and she had taken everything off the cork board and I would find them in the trash can by her bed. Not saying a word, I would re-hang them when she wasn’t looking. She never commented on my actions.
Often I encourage family members and friends to mail cards to our loved ones who are in a long-term care facility (or hospital). Many of the residents that I visit do not have a single card, plant, vase, picture, or special gift in their rooms. (Their rooms look bare and lonely.) When we mail a card once a month to someone who we cannot visit as often as we wish, we are giving them a true gift – a chance to receive mail, an opportunity to “show off” the card, and a gift of ourselves to them. In this simple act, we express consideration and support (and comfort) to our loved ones. A small expression gives huge joy. When we care for persons with dementia, we learn very quickly that the smallest of gestures are meaningful and matter the most. (Here’s a tip: choose greeting cards with beautiful pictures on the front such as animals, nature, butterflies, or flowers and add a handwritten note. “I love you and think of you every day. Thank you for everything that you did for me when I was a child.”)
Think of activities that our loved ones enjoyed when they were healthier and then tweak that activity to fit their level of ability. Someone who liked to make crafts in the past, might enjoy a box of different kinds of fabrics, buttons, and zippers. Different on-line sites sell quilts made with zippers, pockets and buttons and bows – called a fidget quilt – while others offer craft projects adapted to someone who has Alzheimer’s. This is a wonderful idea for those who enjoyed crafts, or for the person whose hands fidget and are in constant motion. (Each person with a dementia will be at a different stage of loss – some will not be able to use their hands due to loss of fine motor skills. And, of course, some will have forgotten how to tie a bow, fasten a button, etc.)
Some people with Alzheimer’s may not actually want to do the activity – but will enjoy sitting and watching their loved one participate. My mother no longer gardened but liked to watch the staff plant vegetables and flowers in the communal gardens.
Some people have dolls that can be dressed; some persons with dementia like to do puzzles (there are many puzzles that are adapted to Alzheimer’s and dementia); some will respond to a box of tools or a box of kitchen gadgets (for those who loved to cook). And many persons with a dementia love to draw or paint. When I visit the care facility, I am always astounded at the beauty of many of the paintings that are hung in the hallways – the subjects are often simple, but beautifully crafted: a simple maple tree, a vibrant red cardinal or a vase of flowers.
Finding the activity just takes a little detective work on the carer’s part. And sometimes our loved ones will tell us in their own way – my mother spent every day sorting through her dresser drawers, re-arranging things constantly. We learned that it calmed her and we stopped trying to re-order her items. Once I found mince tarts in her lingerie drawer and pieces of chocolate – all melted and a complete mess. We learned not to sweat the small stuff and just to remove the mince tarts and chocolate. (Tip: add some small boxes or plastic containers to the drawers so that your loved one can fill them with items of their own choosing.)
Lastly, I learned that sitting outdoors in the garden with my mother gave her immense pleasure. We would sit for a couple of hours, listening to the birdsong and watching the birds at the many feeders located in the garden. Squirrels would visit and the occasional rabbit family would grace us with their presence.
On a few occasions, my mother would comment on a trip that she made when she was a young woman, confusing the present day with her past. Instead of sitting with her daughter in the garden, she was sitting with her friend in the courtyard of the hotel where they stayed. At first I was confused about her stories, but I learned to just go with the flow – and stay in the Now. That is, my Now; not hers. Either her past or my present, we both were content to sit in the garden in stillness and peace.
Those were the happiest times when we just sat in silence and stillness. I would forget that my mother had a dementia and lived in a long-term care facility. I just sat in the moment, enjoying the Now.
It’s really not about the activity or how we spend time with someone, it’s about the loving energy when we sit with them. If we visit with an open heart, and we are willing to leave our egos aside, our visit will matter – to our loved one and to us.