Dec 172012
 

Kaye Fox (right) with her spouse and care partner, Lisa.

Ah, it’s that most wonderful time of the year. The store shelves are groaning gentle reader, from the weight of merchandise placed on those shelves and the skinny arms which hold them up. Stores are crowded with more racks of clothing and the people, ah yes the people, loaded down with stuff over-flowing from their carts, picking out things for those who are naughty and nice. After all it is the season for forgiveness.
 
The makeup counter is bustling with people sampling items and browsing free gift offerings. There are numbers of sales people trying their best to get you to sample all of the pretty things they have for you to buy with the offer of a free gift! People crowd around shoving and pushing trying to see the merchandise.
 
The music overhead  blares “Deck the Halls” and trees, wreaths and even a Santa or two are decked out with bright blinking lights. And the noise gentle reader, it is deafening to a point where it’s difficult to understand the words the carolers are singing as they joyfully ring their bells. Ding, Dong, Ding, Dong.
 
But wait…look over there. There is a woman with her aide, cringing in fright to the point where she looks like she is going to scream. The woman looks so terrified, so alone and confused. I go over and see if I can help. The aide holding onto her coat sleeve smiles at me when I ask if I can help. She says, “No, she will be alright.” But she sure doesn’t look alright. I glance at the woman’s wrist the aide is holding and see a bracelet that says “MedicAlert + Safe Return.”  The aide quietly whispers in my ear, “She has Alzheimer’s.”
 
I tell you all of this, gentle reader because that woman is me! I am one of over 5 million individuals in the U.S. affected by this terrible disease. When you have Alzheimer’s, or another dementia, your life can feel like a mess during the holidays. The loud noises, the ringing bells, the singing, twinkling lights and the crowds can make a person with Alzheimer’s feel all sorts of horrible, scary feelings. This stimulation has caused me to feel panic stricken, unable to move at times.

You see with dementia, things are always changing. I have good days that can last for weeks and then suddenly, I find myself in a life-squeezing terror because my partner dropped a dish and the noise triggers a panic. I freeze not knowing what to do. My heart seems as if it is going to burst out of my chest. And then it’s over. A degree of peace washes over me like water in a shower and everything is right again, but maybe only for a moment.  A child’s scream, a baby crying — those are triggers for me. I go into a stomach-griping fear, and it rises up and makes me want to scream.

My tips to make the holidays more enjoyable
The holiday season can be a stressful time for individuals living with Alzheimer’s and other dementias. Here are some things you, gentle reader can do to make this time of year more enjoyable for the person with dementia:

  • Assist the individual with dementia to set their own limits early, and be clear about them with others. Remind them that they don’t have to live up to the expectations of friends or relatives to attend holiday gatherings or participate in every social event.
  • Encourage family and friends to visit the person with dementia – even if it is difficult for them. However the number of people visiting at one time should be kept to a minimum. Perhaps try a few people visiting quietly in a separate room. Ensure that the person with dementia has adequate private time to rest between visits or as needed.
  • Be mindful of sensory stimulation such as light intensity or sound. Avoid changing light intensity; too bright or too dark. Be careful not to make sudden, loud noises that may startle the person with dementia or cause overstimulation.
  • If you are a caregiver and receive an invitation to a holiday celebration which the person with dementia cannot attend, GO YOURSELF. Enjoy the chance to be with friends and family who love you and enjoy your company.  Ask friends and family to visit with the person with dementia while you are away.

For more information about how you can support the Alzheimer’s Association to enhance care and support for those affected by Alzheimer’s disease, visit www.alz.org or call their 24/7 Helpline at 800.272.3900.

Join me and let’s make a difference together.

Learn More:

Kaye Fox is a member of the 2012 Alzheimer’s Association National Early-Stage Advisory Group. As an advisor, Kaye is interested in advocating for support groups that concentrate on living with the disease and planning for the future. More specifically, as a transsexual woman and pastor, Kaye has a special interest in developing “safe” meetings for members of the LGBTQ community dealing with Alzheimer’s disease.

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