Keeping Holidays Memorable

Holidays are a time to make memories, to spend time with your loved ones and pass on traditions. Holidays are also one of the most stressful times of the year.  But what about when you’re a caregiver for an aging parent with dementia? Or a spouse? These situations amplify the already stressful holiday season. A caregiver may be feeling overwhelmed trying to juggle everything in addition to the holiday demands, sadness and loss from seeing their loved one fade away from them, and perhaps even disappointment that things aren’t turning out as expected. Despite these additional hurdles and emotional challenges, it is still possible to have an enjoyable holiday while being a caregiver to someone with dementia.  

First off, as a caregiver, adjust your expectations and do what is reasonable. Lose the superhero image.  You can’t do it all so give yourself permission to do only what you can reasonably manage.  Prepare your loved one for the upcoming holidays by talking about and showing photos of people who are coming to visit. Play familiar holiday music and serve traditional holiday foods. Include your loved one in the festivities! Helping wrap presents, polishing silverware and helping to decorate can all be great activities. Keep in mind that with people dementia, their abilities are always changing so what Mom or Dad was doing last year may not be the same as this year. When it comes to activities, it’s the DOING that’s important, not the end product. So if Mom is enjoying herself helping wrap presents, but later on you have to go back and rewrap a few, who cares? In that moment, it brought joy to her and that’s what really matters.

Sometimes it may be necessary to prepare visitors of the situation. Ask people to call before coming over and give an advanced notice to expectant visitors. “Mom sometimes has difficulty remembering and thinking clearly- sometimes her actions are a little unpredictable,” or “Don’t be offended if Dad thinks you’re someone else. He and I both appreciate you being here,” may be good ways to explain to guests what’s going on at home. Remind visitors that caregiving is a tough job, ask for support so that they can help you create a holiday memory to treasure.

During festivities, it may be beneficial to have a “quiet” room if things get to hectic and prepare distractions in advance to divert attention. Host small gatherings as to not overwhelm your loved one and try to host get-togethers early in the day when Mom or Dad is at their best. Even if wandering isn’t an issue, designate someone to keep track of your loved one at all times. Avoid candles and blinking lights, noisy crowds, trip hazards such as throw rugs, wires and cords, and alcohol.

Remember to take time to yourself to reduce caregiver burden or burn out. Something as simple as taking two hours off for yourself can do wonders. While no one expects you to do it all, be sure to do the things you treasure the most. Call upon those who offer to help and take advantage of respite care, if needed. If your loved one is in a facility, celebrate with them in the most familiar setting. Schedule visits to coincide with your loved ones best time of day and keep visitor traffic to a minimum in order do reduce anxiety. Above all, adapt what you do and take the time to enjoy the present.

Dementia Myth #1

Recently, I went on a trip with my mom to visit my grandma in Wisconsin for Mother's Day. I have a very close relationship with my grandma and try to visit her any opportunity I get. A few years ago, she moved into a town home in a little community with mainly seniors and elderly people. Don't let their age fool you though, they know how to throw a party. While I was visiting, my grandma was telling me how they had a Kentucky Derby party at the club house and the entire neighborhood turned up and dressed the part. My awesome grandma even won a prize for best hat (not to mention sixty bucks betting on the winning horse).

Like most grandmas, she always asks me what's going on in my life, what's new, etc. The first night I was visiting, we stayed up late into the night talking and catching up. She shared with me a story about how she had lunch with a neighbor whose wife had Alzheimer's disease. The wife had been in assisted living since before my grandparents had moved there, so at least 5 years. As we all know, there really isn't too much improvement with AD and it's unimaginably difficult to watch someone you love go down that road. It had been some time since this man's wife recognized him as her husband, and he had come to accept that. The last time he visited her though, she introduced him both as her father and her son. It was a big surprise for him and he wasn't quite sure what it meant.

This is something that I have encountered countless times with families. One of their biggest fears is that their loved one will stop remembering who they are. In some ways, this is true. I had a resident whose daughter came in about once every week or two to visit him. One day, I was with him in his room when she dropped by for a visit. She came in and my resident turned to me and said, "Emily, who is that?" and his daughter instantly burst into tears because, for the very first time, he didn't remember who she was. I felt so guilty that, in that moment, he knew who I was but didn't recognize his daughter. In his defense though, I was wearing a name tag and seeing someone new in our conversation surprised him a little.

After the shock wore off, the daughter came back in to visit with her dad for a while. They spent the afternoon reading books and looking through photo albums. After she left, he told me that someone came to visit him that day. We talked about what they did and throughout his recollection of what happened, the person who visited his changed from his daughter to his wife to his mom and an old friend. "I know she's a busy girl, but it makes me so happy when she visits me."

In this case, and in my grandma's friend's case, and in more cases that I can count, yes, the person forgot who their loved one is. However, they did not forget the feelings they had for the person. They knew that it was someone that they love and that loves them back, a person of comfort and joy, someone they could trust and someone that can support them. Even as a care partner, I feel like my residents can recognize me as someone that can help because of the positivity I try to bring to them.

Someone with dementia will probably mess up and call their daughter their sister or their husband their son. That's ok! They may not be able to place exactly where the person fits into their life, they just know that they do. When my grandma's friend's wife introduced him as her "son," it was just a title she gave him because a son is someone you love unconditionally and loves you back. That's what was going on in her reality at that moment. If she's happy in that moment, that's the only thing that really matters.