Tips for Dementia Cargiving

I can’t believe Papa’s been gone for almost 6 months now. Most of the time I don’t feel as if he’s really gone, it’s more like he’s just with me in a different way. The unconditional love he gave me knows no death, and I feel his spirit all the time. I often think back to the times when I would kiss him on his forehead, he would lean into me smelling of old spice and syrup as I would take a deep breath through my nose and pause an extra second to soak in the moment so I could dog-ear it for the years to come. It makes my heart surged with pure love and bliss just thinking about it.

Thankfully I have videos of him as well, so when I’m missing him I’ll just look through my phone and watch a couple and it always lifts my spirits. I decided to make a montage of my favorite videos of him to share with you.

I’ve wanted to share the things we’d learned while caring for Papa in the hopes that it may help someone else going through a similar situation. Most of the things we tried, worked for a while and then they didn’t. It’s a trial and error situation and you have to keep adapting because their disease is constantly progressing making things more challenging.

HOMEMADE BIBS

Cut a hole in an old towel and use as bib.

We had 5 or 6 old towels we cut holes in and they worked wonderful!

ARROWS ON THE FLOOR

When pops could still understand directions we put electrical tape on the floor with arrows to help guide him to the restroom. Sometimes it worked, other times it didn’t.

We tried glow in the dark tape too, but it didn’t stay glowing through the night

REUSEABLE UNDER PADS

There will be a time when furniture needs to be covered, we tried the plastic covers and they worked for a while. Unfortunately they tear and aren’t comfortable for anyone, especially the elderly.

sitting in this chair with the plastic cover felt like we were in the 1950’s!

In the end we found that reusable underpads were the way to go. I’d recommend the standard light blue, it definately did the job and when we used the dark blue super waterproof they seemed to make him sweat, and not let his skin breath causing other problems.

MONITORS

Monitors will make life so much easier. In the beginning we had this fella (pictured below) given to us by a friend and then Mitch went all out getting a surveillance system 2 camera set up making life so much easier. It alerted us when he was moving, and him having horrible balance gave us just enough time to look at the monitor to see if he was standing up, or he would just be brushing his hair and was moving around. Either way, it was worth it a million times over. We still used the little guy shown here in the picture, we put it on the back of the bathroom toilet, so when he was able to take himself into the restroom we weren’t invading his space, but if he was standing and we didn’t see his face, we knew to run in and help.

LIGHTING UP THE TOILET BOWL

The motion activated toilet bowl night-light (bowl glow) worked wonderfully for us for a long time, long after he forgot what things were used for, he would still head straight for the light in the middle of the night.

we also put a towel underneath just in case he was close, but not close enough

It had lots of different colors to choose from

it seemed the green and blue he would go to more, the red color didn’t really work for him. Maybe because he was color blind?

ROOM DIVIDERS

We found that if there wasn’t anything for him to see, he was less likely to get wrapped up in it. At night we would take three room dividers and place them in a half circle pattern around his bed with only the portable potty with the toilet bowl night-light in the middle. It worked really well for us, most of the time.

TOOLS TO KEEP HIM OCCUPIED

I took construction paper, made shapes and put magnets inside each one

then I took another magnet, wrapped fishing line from an ice fishing pole around it and then wrapped it all with electrical tape

I created a pillow cover with string and buttons, a zipper, some foreign coins, a crocheted dish cloth I made and put coins between it with the hopes he would want to try and get the coins out to look at.

He fiddled with it for about 20 minutes, and had no interest in it EVER again, but at least I tried.

He spent hours pulling apart paper towels

The best one was a nut and bolt set given to us by a friend who’d worked with dementia patients. It’s different size bolts and nuts on a block of wood. After papa passed we re-gifted it to a dementia care facility.

TAKING THE BLAME

Having to see Dad struggle with the confusion and frustration of dementia was so hard, so any time he thought he was right about something, we just let him be right. The struggle is real! The best way to manage situations is to help them feel like they are making choices (giving two options worked best for us) and their feelings about certain things are justified. Also, know it’s ok to feel your own feelings, just give yourself a break from them during that time to remind yourself that it’s the disease, it’s not them. Sometimes they may hurt your feelings, be combative or even inappropriate and it’s in those times that you have a real opportunity to better yourself because of their disease. Taking time to separate yourself from them while you process your own emotions is vital! We went into each day with compassion for his situation, unconditional love and mindset of forgiveness of whatever transgressions are to come.

YOU ARE NOT ALONE

I watched video’s, read books and search for insight online that reminded me that this isn’t just our journey, there are so many out there going through the same thing. Also, if you don’t have a group of people to rely on, get one, the sooner the better. This is definitely not a one person job, not even a two person, it takes a team and the sooner you can build that team the better. God Bless, and as sissy Annette says, “Do your best, and forget the rest.”