Posted Friday the 13th of November, in the year 2020. What could possibly go wrong? (Breaking News! I hear the Communist Chinese government has mandated that one large textile plant will sew little winter jackets for the murder hornets so they can sting us in the winter. I will check on the validity of the source and get back with you.)
“If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him!”-Luke 11:13
Triskaidekaphobia is the fear of Friday the 13th. There are all sorts of interesting explanations of the fear of the number 13 and Friday the 13th here, but I am not particularly superstitious myself. It is interesting to me the many phobias, rational and otherwise, that humans can have. My phobias, as I mentioned here and here, include such scary things as stinging insects, dolphins/large fish, having to pack gauze in my side (that is a new one), double knit or velvet fabric, and looking like a fool in public. Maybe these don’t all rise to the level of a legit phobia, but I am certainly genuinely scared of them…
So in dementia, let’s talk about fear for a hot minute as we wrap up another week. There are at least a few key facets of fear for a dementia patient for us to consider (and I welcome your additions in the comments below):
- Fear is real to them– Part of caregiving with a person with dementia is entering their world. I mean, you don’t HAVE TO DO THAT. You can remain distant and sterile and just help them subsist, but, since you are reading my odd little blog, I feel super confident you are not that kind of caregiver. We enter their world because we don’t want them to be alone there. We comfort, we love, but we don’t correct them or invalidate their fear. One of my favorite Sweet 17 damsels told me very clearly one day to watch out for the snakes in the hallway. Were there snakes in the hallway? In our world, there were not. However, to Mrs. W, there was something there that either scared her or that she was caring for me enough to warn me to avoid. Could there be a grumpy snake resident or employee? Or could it be that she was expressing love for me by wanting me to be safe from anything and snakes were the most scary thing left? Who knows, but I treated it as valid and gave her much love for warning me of the pitfall. Sadly/happily, this damsel fears no more as she has shed Lewy Body Dementia and replaced it with her glorified, heavenly one, but I will never forget her.
- Some fear is irrational– Paranoia in dementia is super common. Fear that someone wants to harm us is a base instinct that we are pre-programmed with by our Creator and fear is a natural response. But some may appear irrational. As mentioned previously, snakes in the hallway were likely either symbolizing something for a result of the Lewy Body dementia’s hallucination tendencies. When your brain is broken, any irrational fear is in the range of possibilities. I have heard it all and I have only been super aware of the harmfulness of dementia for 10 years.
- Some fear is rational-Never lose sight with the fact that fear COULD be really real. There are terrible people out there who will prey on folks with dementia. These demonic folks are the lowest of the low, but they are far too common. Evaluate every fear, and empathize…but don’t completely brush them off when you are done. Sometimes it pays to think outside the box. Maybe a fear of water is a fear of falling in the bath or a fear of drowning (like my mom has)? Maybe a fear of a nurse is a remnant of embarrassment of being naked (something that doesn’t go away easily)? The fear may be real, it may not…but it is real to them.
- Fear is exhaustive– I cannot read minds, but I feel safe in saying that fear is an aspect of the condition that hits nearly all of our loved ones. Fearing the unknown…an unknown that is expanding by the day as memories and reference points are stripped from them…is tragic and a reality to all that are cognitively aware. I hate this for them and it makes me sad and mad that many…dare I say most…have nobody there but the Lord to walk with them through these terrors.
- Fear is exhausting– Mom paced for hours and hours and hours a couple of years ago. Sometimes she was looking for something. Other times she was worried about something. She would carry a pillow case full of her “valuables” like an anti-Santa and would play heck before she let you look in there out of fear you would lose something. She needed this control in her life. She had sundowners (Definition: here and here and the million links within) and slept only sporadically and at the wrong times. In short, she was exhausted…and it cost her her health. She fell over and over, like a parched desert nomad whose time outlasted his drink. It is also exhausting as a caregiver to watch and care for them in the pacing/sundowning stages of early and mid-level dementia. Sadly, she is pretty easy these days (had I been able to stinking visit her!!!) because the million falls and the disease has enthroned her in a wheelchair for a year now. Be prepared and find respite help. You will be marathon tired mist days…
- Never forget the physical– Does your loved one have a new fear or a change in personality all of the sudden? Rule out the physical first! Pain? UTI? Hunger/thirst? Eliminate these things… The fear CAN be tied to confusion over how they feel!
- Have a dumpster full of empathy– Last, for now…a rerun: Have empathy for their fears. Love on them. Console them. Validate them. Hug them. It is a terrible disease. A little empathy will go a long way. A lot of empathy even further. Fake it until you make it if you have to…but never lose empathy.
- Fear doesn’t have to last forever- Verse
I hate fear. I do. Really…I do! I hate it for them, I hate it for you, and I hate it for me. Add this as another reason why we simply have to #EndALZ! Have a wonderful weekend, friend. You are not alone. Together, we have less to fear. 🙂
Holler if I can help. 🙂 (firstname.lastname@example.org or 417-955-2513 by call or text) Also, Tuesday evening at 6pm CST is our caregiver support group if you would like a Zoom invite, holler.
Bye for now…
Update: FINALLY it appears that the COVID cases have done their worst and the last few days have been COVID free at mom’s nursing home. November 30th they will begin outdoor visits (in the snow?). I am super excited to see mom and I hope she is comforted in the meantime. I yearn for the evenings we used to hang out and watch Andy Griffith while she ate. COVID and dementia has stolen a lot, but they won’t steal those memories…