Almost anyone dying from dementia suffers from behaviors. Behaviors are simply part of the game when it comes to this disease… BUT, there are “behaviors” and then there are “behaviors….” something no one can clearly define.
Here is my personal definition (and opinion because I’m a writer, not a doctor): Bad behavior – throwing your feces at someone or taking a sharp object and using it to attack another human being/caregiver. Tolerable behavior – spitting on the floor.
My mother suffers from the latter………….. she spits on the floor, especially when she is really agitated. It’s how she acts out. She’ll yell, “Despierta America!!!” when people are doing things to her like thrusting a catheter inside her. She hates showers, so she’ll cause a ruckus. OK, it is important to try and put yourself in my mother’s shoes. She has no idea what is going on around her. She CANNOT communicate. She cannot tell me if she’s in pain. She cannot tell me if she’s happy.
The only two places on the planet right now that are remotely familiar to her are her house and her church.
Imaging being picked up and dropped off in the middle of Jalalabad, Afghanistan. You can’t speak the language, you have no idea who is on your side, who wants to help you, you don’t know where to go…. people approach you, what would you do?
You would probably behave VERY inappropriately.
There was a time when my mother did act out. She would push me over to run to her boyfriend, The Priest. Sometimes, when I would try to restrain her from running into the church aisle, she accidentally hurt me………. wrestling in a tight pew can cause bruising and minor scratches. There was also a time when my mom would do things to get out of our locked house (she wanted to walk to church, her happy place)…………….. She took a pair of scissors and cut the screen door to try and get out. She used to spit — a lot. She would use the stove or microwave objects that clearly state on the label, “Do Not Microwave or You Will Burn Down Your House.”
My mother most definitely went through a very, very, very difficult stage. She gives new meaning to the Terrible Two’s………….. more like Terrible 70s.
Today, she’s mostly mellow. Medication helps that, but lately, even without the meds, she’s kinda quiet — except when you give her a shower……………… most demented people HATE water……………….. poke and prod her, force her to eat something she just doesn’t like, or you steal her hot water bottle……………. the thing is like her baby blanket.
Or when she sees me. She talks to me….. Despierta America, la fruta, la fruta. Despierta America, la fruta, la fruta. Despierta America, la fruta, la fruta.
After being told my deadline at the hospital, I got to work. I started making calls………. and then a miracle: ALTCS came through at around 330pm that same day she was rushed to the ER……….. I could place my mother. Somewhere.
Now in the name of honesty, when dealing with any type of home, you have to tell people what your parent is like because if they aren’t a good fit at the facility, it’s just a bad situation for everyone.
I spoke to one woman and told her about my mom’s current “behaviors.”
Her (paraphrased) response: Well, you know sometimes with behaviors, they end up in a place like St. Luke’s, which deals with behaviors.
My (paraphrased) response: Wait. St. Luke’s as in the psych ward? No. No. My mom ended up there a few years ago and they wanted to do shock treatment. No, I won’t do that.
Her (paraphrased) response: You know sometimes you have to be open to other solutions…. I mean, would you rather have your mother sedated all the time or maybe something like shock treatment might improve her quality of life. You know, shock treatment is not what you think… it has evolved a lot.
My (paraphrased) response: Uh-huh. Um OK. Well I’m still thinking. OK. I’ll call you back.
That’s the challenge. Right there……. that is the challenge. This is my mother and you have the nerve to bring up shock treatment — I mean, electroconvulsive therapy?
Makes you wonder how many of these folks would strap down their own parent (or child) and “medically” induce seizures so they can eventually be tolerable to their caregivers?
Behaviors are indeed difficult and tricky…….. but are we really this savage, this primitive?
A conventional nursing home was likely not going to cut it (I had called another place and was met with a similar response and then she told me they had no beds)………………. and since the nursing home of my dreams had no beds (they take in some of the trickiest patients, and have some amazing success stories sans ECT)………………. I started exploring group homes.
Perhaps a home-like setting would be the ticket. Still, I kept her on a waiting list for my dream nursing home…………….. just in case now and for the future.
I can’t tell you how difficult this was. At this point, I had maybe less than 24 hours to find something. Some homes were so-so — tolerable. Others reminded me of Deliverance. The woman at one place had only three teeth, which is fine, except I wondered, if you can’t even take care and maintain your own oral hygiene, how can you possibly care for my mother? Another place was amazing, stunning, perfect……… Dad and I agreed: this would be the place. I called less than hour after seeing the house and no call back. I texted. She texted back saying she’d call me later. I told her I wanted the room. Loved the house. “Tx,” she replied. I thought I had found the place. By 7pm we connect. “Um, I am so sorry but the room was sold, but I have a place in Surprise and then I will have availability in four weeks,” she tells me in her Eastern European accent.
Four weeks? You sold the room? Surprise?
The running joke with Surprise is that when you arrive in Surprise, you say, “Surprise, you’re in California!!!” It’s that far from downtown Phoenix.
I was desperate. I hadn’t found anything yet. I agreed to go to Surprise the following day.
In the meantime, dad found a place near his house……………. literally a couple blocks away. He wanted her close. He wanted to place her there. At this point, I was beyond pissed. I had had it. I was fed up. Tired. Smelly. Constipated. And sick and tired of my life.
I agreed to see the place.
I liked it.
It didn’t smell sick.
It didn’t smell over-perfumed.
It felt normal.
I over emphasized her behaviors.
They didn’t seem to mind. They seemed capable. The house was simple, yet very clean. The residence didn’t look as though they were housed in some wretched cage. It was close too………….. always key.
Eastern European chick called me Monday morning to tell me that a room at the original house had opened up. Miracle. “Please come to my house. Please. I have 16 years of experience. Please bring your mom here,” she said.
I didn’t say that. I thought it.
Dear lord that picture above is horrible. I know how you feel… no where is perfect because no where is home. It always feels like you have to give up this bit of goodness to get another… god forbid we find the perfect fit. The main thing that has helped in our situation and in the group home is decorating her room with all her special, memorable things from “home”. My Dad actually called me in tears the first time he came to see her because it remindd him so much of their house. I am here for you if I can help at all. Best wishes to you, your dad and your mom. Stay strong.
I stumbled across your blog as another wordpress blogger. Thank you for your honesty and for your willingness to share. I began a blog a few months ago born out of my experience as a hospice chaplain. Often, I work with people who are living with dementia. Those with whom I have had the privilege of being with have taught me so much about life. The next time I do an entry about dementia, would it be ok with you if I placed a link to your blog?
Thank you again for this blog. Blessings to you.
Thanks for your note… I’m happy to hear that the blog resonated with you… and yes, please share the blog; let’s spread the word – you’re not alone in this.
thanks suzette. i know you understand… its getting better the transition, etc. it’ll never be good or great; it sort of just “is” but thanks.