Millie ChristmasI was so surprised to have to say goodbye to the holidays as I knew them while I was taking care of Millie. My grandmother was ALL ABOUT the holidays when I was growing up. She had the house decorated perfectly, had Christmas cards sent at just the right time, hosted the entire extended family for meals. She even had a closet dedicated to boxes where she housed shelf after shelf of containers of all sizes just waiting to be needed and used for gift wrapping. My grandmother and my childhood Christmases are one long ribbon of memories.

We had a tree the first year into our blended life of granddaughter/grandmother/caregiver/care-needer. It was in the living room, a room we seldom went into so Millie didn’t see it often. My mother and I quickly learned that every holiday card she received in the mail brought her great agitation. She would open the card, read the message, struggle to recall who the people were smiling at her in the enclosed photos, and then she would worry that she had not sent them a card. I assured her that we had, indeed, sent out cards. I made sure to keep to her schedule of card sending as best as I could.

She would open and look at cards over and over and over and over and over again. Sometimes they made her smile. Sometimes the smile would be because she recognized the family that once lived next to her for decades. Sometimes the smile would be because they looked nice people. More often she would sob. She would realize that she did not know who these people were, but felt that she should know them. Cards became torture.

The next Christmas we did everything differently. Christmas became a holiday that happened outside of the house. It was a holiday that we visited if we felt it was a good day for it. We brought the spirit of Christmas to Millie in small ways, comforting ways. We watched the Vienna Boys Choir and we watched pretty much every single holiday special PBS aired. And we watched them every day.

I learned a lot about how to let go of old Christmas traditions and embrace where your family is in the moment. There were several Christmases that did not feel very special, but I knew that Millie was calm and not agitated, and that was my primary focus.

Mother and I are now working to bring Millie back into our Christmas traditions. We have a LONG way to go before we could ever reach her status of ultimate holiday planner, but we are doing things with W that Millie once did with me when I was a kid during the holidays.

Being a caregiver during the holidays is brutal. I won’t sugar coat it, there are no sugar plum fairies.
[Tweet “Advice for the caregiver having an “Alzheimer’s Holiday” #caregiving #caresupport #carekc”]

What I learned during my Alzheimer’s Christmases:

1. Be alert. Pay attention to what is triggering any new anxiety during the holidays. For Millie it was the arrival of mail and the ringing of the doorbell. I put a note on our door to ask that the doorbell not be rung and I made sure I was with Millie when we went through her mail. If she received a holiday card after she read it I put it in a box that was out of sight. If she wanted to see the card again I would bring down the box.

2. Keep things simple. Decorations all over the house are not a great idea. Any change to the home is not ideal during the holidays. Rearranging furniture for a tree can be very upsetting. If you want decorations, consider having them in a room that is not frequented by your loved one.

3. Unlock a memory or just enjoy the music. Find out what holiday programs your loved one enjoyed years ago and play it. If they enjoy it, play it again!

4. Manage your own expectations. Driving around and looking at holiday lights is fun and can be special, just remember that sundowning happens during the holidays as well so don’t push your loved one beyond their limits.

5. Reach out and find yourself some respite care during the holidays. TAKE CARE OF YOU. Start with your church or local community center to find respite. Millie really loved having a visitor once a week. Delores sat with Millie and they watched TV and talked. This provided me with four hours to get out of the house and see that Christmas was still happening.

6. DO remember that Christmas still happens. Even if it is not happening in your house, it is happening. Connect with people as often as you can during this time. I was Millie’s primary caregiver so I did most of my connecting with people online. Internet chats, emails, Skype – all of this is so important during the holidays.

7. Being sad during this time of year is normal. In fact it is SO normal that it happens for people who are not caregivers too! Prepare yourself for The Sad. I once cried for hours on a Christmas Eve because everything just felt so hopeless. The next morning I helped Millie get dressed and I told her, “today is Christmas.” She looked at me in complete shock and then she wept. So we wept together. I have no advice on how to escape The Sad, all I can say is surround yourself with love and know that it fades.

8. Find YOUR Christmas sweet spot. Since we didn’t have a tree or decorations (heck we were living in Florida so we didn’t even have proper weather!) I had to figure out where MY Christmas was going to happen. It ended up being food. Oh, glorious food! I loved making Millie’s recipes from her Christmas meals and I loved experimenting with other holiday recipes. If I could get the house to smell like cinnamon I was going to be ok.

BONUS: Many times after watching Christmas specials on PBS Millie would have these beautiful lucid moments. Mother and I would soak in this time for the gift that it was. Often we spent this time going through old photo albums with Millie. More recent photos and images were upsetting, but images from her childhood sometimes became keys that unlocked the most wonderful stories.

Caregiver advice for holidays

{Disclosure: I am so pleased to share that I am a new member of AARP’s Blogger Kitchen Cabinet on #caregiving, #caresupport, #carekc issues. All opinions are my own.}

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