The holidays can be a time of equal parts sentimentality and stress for any family. But, when you add in a loved one with dementia, those experiences can intensify.
~ https://www.alzheimers.net/12-9-14-dementia-during-holidays
Sophie had just one photo in her nursing home room, and it was at her bedside. The picture was of the home where she had lived since shortly after she was married, where her children grew up, and where she lived until the death of her husband a few years prior. It was just one picture in a battered, beloved frame, but to Sophie it was an entire album that told the stories of her life in the house. When anyone would visit her, she proudly and repeatedly shared the stories of her life by pointing to a window in the picture and talking about what happened in that particular room. She told stories of holiday dinners in the dining room, her husband’s workshop in the garage, why the Christmas tree went in a particular window, flowers she had planted along the front walkway, times that the snow nearly reached the bay window, her children playing in their rooms, and of their growing up years.
The joy—the spiritual joy—in her stories and memories was quite clear. As Sophie descended further and further into the memory losses and physical limits of dementia, visitors would sit with her, point out certain features of her house in the photo, and tell her the stories she had been telling for years. The stories carried on, just in a different voice. The spiritual gifts of truly listening and focused presence as Sophie had told her stories created another gift as time went on so that her stories and her joy remained.
The holidays were always important to Sophie. She had loved to host, to plan even the smallest details, to decorate and to cook and bake for family and friends and for local charities.
It was Thanksgiving dinner when her family saw some small changes in her but thought nothing of it, dismissing it as holiday excitement. Later on, they looked back and understood that they had seen the first inklings of dementia, but it was so subtle then. Sophie had forgotten the flour for the gravy she had made for years, she couldn’t remember where her favorite serving platter was stored and was unusually short-tempered.
Within the next year the changes and decline were more obvious. Her daughter became an active champion for her mother’s needs and to maintain her independence as much as possible throughout the dementia journey.
Holding on to the beloved holiday celebrations, through trial and error of adapting and readapting as needed, reluctantly letting go of traditions and activities when the time came, Sophie’s family enhanced her quality of life through what had always brought her so much joy.
The overall goal was to keep Sophie involved as much as possible in the holiday preparations, decorating, and celebrating. As the years passed on there was a constant shifting of plans and strategies. Traditions, expectations, and reality mean that some of these were planned out successfully, while others had to be suddenly tweaked, revised or even let go.
Following the advice of a good friend whose father was now at a more advanced state of Alzheimer’s, they sent out information to those who would be visiting Sophie for the upcoming holiday. While they knew it would be helpful for others to be aware of what had changed and what had not changed for her, her family was surprised to see that it was both helpful and a reality check for them as well. It was also guidance and insight for those who were not sure what to expect or how to act around someone they had known for decades.
Mom will be so happy to see you on Christmas! Before you arrive, we want to let you know some changes for her in this still early stage of her dementia.
As always, she enjoyed helping us put up the tree, but she did this by putting some decorations on, taking them off, and putting them back, and repeating this many times before she got bored and walked away. This is a ‘Kodak moment’ of how things are for her right now. She repeats activities and stories and questions, and we just go along with it. She still enjoys being in the kitchen, especially baking, but we have more safety measures and supervision in place. The hardest thing for her right now is to find the right words, and she gets frustrated by this.
You can help her just by being patient, slow and understanding. This will help her not be overly excited and tire out more quickly. In particular, we ask that you avoid questions such as, ‘Do you remember me?’ It will be better for her to say something like, ‘I’m Name. I’ve always enjoyed doing X with you.’
Some gift ideas for her are adult coloring books and colored pencils, clothing that is easy to put on and take off, and she still enjoys listening to 50’s music CD’s.
A few years later………
Dear Family and Friends,
Mom’s dementia has progressed quite a bit this year. We are asking that you all stagger your visits with her and be aware if she is tired or seems overwhelmed.
She requires more help to get the day started so arriving after 10am would be good. She gets upset when too much is happening at a time for her, especially as the day gets later and later. We have been told that this is called ‘sundowning.’ She now gets up and wanders around and we know this is when Mom needs some quiet rest. For this reason, we ask for no visitors after 5pm.
She knows that there is excitement and extra activity but will not always know what the holiday is. She mixes up who different people are so just go along with it or feel free to introduce yourself. Once in a great while she gets suspicious and mistrustful of people that she knows. If that should happen when you are here, we will manage it. We just want you to be aware of the possibility.
She still loves baking and with quite a bit of coaching and cueing she helps add in ingredients, but sadly can no longer do this favorite activity by herself. We don’t believe that she remembers that she used to make dozens and dozens of cookies for the annual church fair.
We have been doing some aromatherapy with her at the suggestion of a therapist, so some scented items and oils are good gift ideas, as are easy clothing and simple craft items.
Thank you for being understanding and patient, and for making Mom’s Christmas special.
And a few more years later……
Dear Family and Friends,
As some of you may know by now, Mom was placed in the Memory Care unit of a local nursing home earlier this year. It was the right decision to make but still a very difficult one to know that we could not keep her safe at home anymore.
Last Christmas evening we took her out to see the light displays around town that she has always enjoyed. We were not out long, and she panicked that someone was “stealing” her, and the lights were clearly overwhelming her. We saw more of the behavior and anxiety over the next few months along with so much physical decline. She is now receiving great care, and we see her at least weekly. It’s so hard to see what this disease has done to her, but she seems content. She has a bird feeder outside her window which she enjoys although she never had one before. Maybe she has a new hobby.
If you visit over the holidays, please do not bring gifts as her space is limited and there really is nothing she could use or want. She does enjoy opening cards although she will not know who sent them. What she does love is showing the framed picture of her house and talking about family, rooms, and holidays. She loves hearing these stories too.
Thank you for being understanding and patient, and for making Mom’s Christmas special.
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