Life changes significantly when the things your loved one once could do are no longer possible.
Dementia leaves you feeling so powerless and it can seem like you’re fighting an uphill battle with more losses than wins. It is so easy to be discouraged.
Today’s blog I’m going to discuss the little things one can do that make the most impact on your loved one with dementia. If you haven’t read my previous post about dementia, you can find it here.
When we typically think of dementia, we think nursing homes, old ladies in sleeping gowns talking about long-gone relatives and confusing events (think Aunt Bethany from National Lampoon’s Christmas Vacation).
Sometimes those things are closer to the truth. Sometimes they’re not.
Comfort is essential.
Think of how you feel after laying in the same position for hours. Would the blankets wrinkle under your legs? And if your back was hurting, would you change position because of it? What if your brain was no longer able to translate the data from your sensory organs?
These are things to think about when considering the comfort of your loved one with dementia.
Is it cold in the room?
Is the sun too bright?
Is it too dark?
Are there sounds that could be confused for something scary if you didn’t know what they were?
Our loved ones with dementia will eventually get to the point where their brains can no longer process, and communication will become impossible. While we’re able to have them with us, it’s important to take into account how they feel.
With all the confusion going on, if you add discomfort to the mix, it can cause increased agitation, which can compound and exacerbate their symptoms, making dealing with everything so much more difficult.
Take a walk in their shoes.
Imagine waking up in a strange place.
Everything is confusing.
People and objects seem somewhat familiar, but you’re not sure why.
A shadow looms and someone towers over you, demanding that you do something.
You were enjoying watching a bird on a tree outside, you don’t want to do whatever they keep insisting.
Without warning, you’re being forced to do something you don’t want to do. It’s scary, it’s confusing, and you wonder if you may be among enemies.
I’ve been struggling with my mom’s dementia in this way. At times she refuses meds and/or changing or washing. I know that these things need to be done so that she doesn’t get sick, but she doesn’t understand.
You can examine the situation and think about how you would feel.
Maybe the music is too loud. Maybe the sun is reflecting off a picture frame and shining in their face. Maybe they need to be moved to a different position. Maybe their clothing is twisted and cutting off circulation.
Once you determine the source of discomfort or irritation, you can correct it, and try giving medication or changing or washing then.
Other times, distractions or bribing with a treat or a favorite activity can help. You can say, “After we get you cleaned up, we can treat ourselves with some chocolate! How does that sound?”
This also allows them to be in the decision making process, as so many of their decisions have been taken away from them at this point. It can really help with self esteem.
I realized, when approaching her, if I remain standing, it puts me in an aggressive and intimidating stance and my mom feels threatened. However, when I crouch or sit down to eye level to talk to her, she relaxes and smiles.
I need to constantly remind myself that she might be uncomfortable. She can’t tell me when something hurts, so I need to be extra diligent in inspecting everything prior to completing: watching fingers and arms while using the Hoyer lift, watching toes and feet when removing/installing railings and that they are properly secured before walking away (especially the ones near the head!), observing how the skin pulls when lifting, if her hair is caught in the pillow, if she needs a pillow behind her back, on top of so many other things. It can be overwhelming how hypervigilant one needs to be.
Sometimes, there’s too much going on. Not everything needs to be completed on your schedule. It’s okay to pick and choose what’s absolutely essential at that time and putting the rest on the backburner for later. As long as the care that’s needed gets completed in a safe manner, you can go with how your loved one is feeling.
When sundowners hits (the late afternoon increase in agitation), everything can change. Sometimes it’s best to do the more strenuous things earlier in the day when their mood is the most stable.
Adapt to the situation.
With dementia, logic does not work.
No matter how much begging, pleading, manipulating you try, it can be impossible to convince a dementia patient that these things are beneficial for them. It’s kind of like a toddler not wanting to take a bath. It forces you to find creative solutions.
My dad found that for my mom, using silverware became increasingly difficult.
My mom would forget their use and hold up to inspect while dropping food everywhere. She was spilling more food than eating and he was worried she wasn’t getting enough calories.
It was then that he had an epiphany that silverware is a social custom, not necessary to actually feed oneself.
He began serving her food that she could eat with her fingers. Once this barrier was removed, she had no trouble feeding herself and her appetite increased.
Just make sure to clean your loved one’s hands (and under fingernails) prior to eating, as this is a potential route for contagion.
I do this with sanitized hand wipes or use a bowl of warm, sudsy water and a washcloth to soak, then a gentle nail file to remove the under nail debris. This particular unpleasant task is a lot easier while the hand is submerged under water. You can wear gloves to do this, but don’t have to. Just be careful not to poke at the sensitive undersides of the nail.
I found that, with a little assistance, I could also help my mom feed herself in another way.
My dad made a pot pie, so once cooled, I loaded up a spoonful, held hands with my mom, and held the spoon with that hand, as if she were holding it.
This way I could steady her tremor, tilt the spoon in the correct position, and guide it to her mouth with her hand. This allowed her to feed herself as if she were doing it on her own.
This also allows me to provide human contact and connection, which dementia patients so desperately need. (I think we all could use a little more of this!)
Music and rhythm find their way into the secret places of the soul ~ Plato
Another cool thing I’ve found that helps, is music.
My mom graduated high school in the early 1970’s, so I began playing hits from specific years like 1971 and 1973. I noticed my mom immediately perk up and become interested.
Sometimes she will say things like, “Oh this!”, or “Oh wow…” in awe, or giggle. It’s always nice to see a smile on her face, instead of that confused, lost look that seems to be taking over. She looks truly happy in those times.
She seems to particularly enjoy Simon and Garfunkel, Carole King, The Mamas and the Papas, and other folk rock of that era.
Be kind to yourself.
Lastly, look out for yourself.
You can’t care for others if you need caring yourself.
Eat right, exercise, talk to qualified people that can help your brain stay screwed on right.
This is probably the hardest thing you’ll ever have to do, but you aren’t alone. Reach out to someone, anyone if you need help. There’s always this number if you need someone to talk to. There is nothing shameful in asking for help.
- Call the National Suicide Prevention Lifeline 1-800-273-8255
- OR Text GO to 741741 to reach a trained Crisis Counselor through Crisis Text Line, a global not-for-profit organization. Free, 24/7, confidential.
Thank you for stopping by to read my words. Make sure to spread some kindness today, to yourself and those around you. You never know who might need a hug from a friend, and we’re all friends here.