Posted 11-18-19
Tis that season again at the Applegate house. We had many a great Christmas season as a family living through the 1970’s and 80’s. My son, a HS senior, is the biggest Christmas evangelist at the house although we all love everything about the holiday. Our decorating kickoff yesterday got me thinking of an article topic, as most things do these days. And down the chimney I go………
How does decorating (early) remind me of dementia? Let me count (some of) the ways…
- Threading the needle: Mom used to involve us in creating the decorations for the Christmas tree every year and the memories lasted longer than our creations (although I do have a few oldies but goodies). Every year we would pop popcorn and and thread said popcorn on a long string to wrap around the tree. These strands only lasted for the season, but they were still extremely worth it. Similarly, we may feel like asking “What’s the use visiting him/her? The memories won’t last.” Trust me, whether or not your loved one “remembers”, it made their life better and you will remember with fondness forever.
- Strength in numbers: My son, for the first year ever, did the ladder work in hanging outdoor lights. Little did he know, that is truly the physically hard part of decorating. My wife is the tree sprucer/shaper, the organizer and the person in charge. My oldest daughter is in charge of cheer and generally helping everywhere needed. My youngest daughter is the artsy one and is in charge of decorating her own room and does great in however she helps. The two cats are in charge of lightening the mood by getting in boxes and sneaking around the tree. Bottom line: It takes all of us to get this mess decorated. In the same way, please don’t be a lone ranger in caregiving. Get help. Delegate small tasks where you can. Find respite. Ease relatives into helping even if it takes more work in the short run.They will benefit and your loved one will too.
- Bottom to Top: When decorating a tree, don’t just focus on the parts at eye level that everyone sees. I won’t get too deep into the topic, but, in bathing a loved one with dementia, be sure to hit the critical parts from top to bottom. Urinary Tract Infections worsen dementia and can cause many symptoms up to and including death. If you, like I was, are uncomfortable “covering the whole tree”, if you will, have a home health care worker do it. There is nothing to be ashamed of…that is why they are paid well (usually…sometimes). Here are some tips: Link 1 Link 2 Link 3 Link 4
- Water Can Be Scary: Back in the early 90’s at Christmastime, in my wife and my first rental home, I had to climb under the tree to water it… and it fell on top of me. My wife laughed. She laughed! And watched. She might have live streamed it had that been an option. Somehow our marriage survived that little hiccup…and the next 28 more years after…all for some water. Water causes downright scary problems for a patient with dementia. Spatial perception is hindered as is vision and comprehension/problem-solving. Water, unless its temperature is perfect and unless you ease the patient into the concept, causes problems. See #3 if you need help in these areas.
- Take pictures, but don’t forget to live in the moment: I tend to hide from being in pictures by always being the one behind the camera. Sometimes I miss some of the best stuff because of that role. Find time to document memories with your loved one…absolutely. However, don’t get so busy documenting that you fail to make new memories. Love on them and leave documenting the memories for your memoir.
- Perfection is your enemy: My wife and I typically put too much pressure on ourselves to have a perfectly decorated house at Christmas…and we end up bickering. We need to set realistic expectations instead of only allowing perfection. That is the same with caregiving. Do your best. Get help. Serve them well…and be glad. Don’t beat yourself up! You will make mistakes. Things will get missed. Such as is life.
- Music sets the mood: We love Christmas music and, whenever #6 kicks in and we get grumpy in decorating, we crank up some music to redirect us. When your loved one with dementia needs a distraction, never forget the useful tool of period music. The Sweet 17 listen to music from the 1950s and the old hymns from days gone by and it soothes them. It is familiar and it engages their mind in a comforting way. Keep it in your tool belt.
- Reason for the season: When I lose the plot a little in the Christmas season, it helps me to go back and read the Gospel narratives again. I read the Christmas stories again and I read some of the prophesy predicting Christ’s birth and I get repointed the right way. Likewise, when you get tired as a caregiver and forget the main point, take a break…get some respite help…and grab a picture album. Have a good cry. Reminisce. Remember. It is hard, I know, but squeeze it in. Never forget you are not helping “a patient”, you are helping your mom, your dad, your husband or your wife. Share pictures, videos and memories with them, even if it seems like it is only for your sake.
- What is on the outside doesn’t always reflect what is on the inside: Some of the least happy people I know still decorate early for Christmas. Does that mean they have a lot of Christmas cheer? It might be, or it could be that they are struggling and need something to fix their mess. Such is the outward appearance of a patient with dementia. Mom has had seasons where she was pretty beat up looking, but things were OK…and the opposite as well. I always keep a positive take on mom and the Sweet 17 regardless of appearance and I always assume they understand more than we know regardless how things look. I feel like this is a good direction to err on.
- Christmas is coming whether you prepare for it or not: Christmas, since we have had children, has never really snuck on us. We have to save to cover the multitude of gifts, parties, events, charitable opportunities and the like, so it is a “last half of the year”- thing for us. However, for those on whom the season sneaks up, be aware…it is coming regardless how often you check the calendar. Sadly, the same can be said for dementia in many ways. We need to take care of our hearts and brain, especially as we start to age. We need to sleep more, drink less, eat right and exercise more. The clock is ticking regardless whether we are listening to it tick. AND, when the signs are there that there may be a problem, we need to visit with our doctor and be screened. There are meds that may help early to extend the easier part that you can only get if you catch the diagnosis fast enough. Ignoring the signs won’t keep it from coming any more than ignoring the calendar.
Life is so short. We decorate and we take them down…over and over. Life transitions us to autopilot mode so fast… then it is over. We all need to stop, perhaps this season more than others, and embrace the peace that can come from this time of year. Watch the seldom-matched joy of a child opening a present, take in It’s a Wonderful Life, and hope and pray for a little snow as a backdrop. And, even if it is a tad early for many of your tastes, let me be one of the first to say a hearty Merry Christmas to all!
#EndALZ
Update: Mom had another good weekend! 🙂 All things are chugging along. All we need now is a cure!