Thursday, November 19, 2015

Severe Dementia

I hate to be a doom and gloom kind of person, but lately I feel really....unsettled. I don't know if that is the right word to describe it, but over the past few months I've kind of been feeling like I need to brace myself and prepare for some more difficult changes heading our way. Mom's disease seems to have progressed to the late stages of the disease. How long this stage lasts, I don't know. But she is more than moderately advanced at this point. I was reviewing the stages of semantic dementia from UCSF's website, and this was the description for the Severe stage:

"After four to five years of SD, the disease is usually quite advanced, which means the person's language skills have significantly eroded, making communication very difficult while the behavioral problems have significantly increased. Typical behaviors seen in late stage SD include disinhibition, apathy, compulsions, impaired face recognition, altered food preference and weight gain. People with left-sided damage tend to show more interest in visual or non-verbal things while people with right-sided damage tend to prefer games with words and symbols. The time from diagnosis to the end typically takes about six years, although this can vary significantly from person to person."

Over the past few months, mom has completely abandoned her rigid schedule and routine. She eats and takes her medicine whenever she thinks it's time. Sometimes, that means a peanut butter and jelly sandwich at midnight. Sometimes, it means pajamas and bedtime at 2:00 in the afternoon. She comprehends nothing that we say to her and her speech is hardly decipherable. But those of you who read regularly already know most of that.

Let me tell you something that you don't know. Twice over the past month (that I know of), mom has wet her pants. I haven't written about it because I thought it might be humiliating for mom. But you know what? It isn't her fault that this disease is ripping away at her. This is progression of the disease and this isn't anything that any of us should be ashamed about, least of all, mom. I know my dad is hoping that it doesn't get to the point of full incontinence, but I fear that it will eventually get to that point.

On Sunday, I took my mom for a walk. Of course she wanted to go to her sister's house, but her sister wasn't feeling up to a visit so I had to try and reroute mom. Needless to say, mom didn't understand my explanation that we couldn't go to Ellen's house and onward she walked. I finally called my dad, who drove up in his truck and brought us back home. But in mom's mind, she was still going to Ellen's. When we walked back into mom's house, she paced around the living room, calling for her sister.

"Ellen Ellen? Is Ellen here, Ellen?" She looked at my dad (who looked a bit confused that she was looking for Ellen in her own home) and I figured out what she thought: that we were at Ellen's house.

"Mom, Ellen isn't here. This is your house mom, we are home at your house," I said to her.

"Ellen, she's not here, no?"

After a few minutes of this, mom rushed back towards the door (where I remained standing).

"Let's go let's go, she's not here no, let's go," mom said.

"Maybe show her the kitchen," dad suggested, hoping it would bring her back to her home.

I guided her into the kitchen and as we approached the doorway, she slowed down and peered in the next room suspiciously. Finally, something sparked inside her.

"Oh! We are home yeah?" she asked.

"Yes, that's right mom, we are in your home now," I answered.

Her disorientation kind of caught me off guard. That she didn't recognize her own home was surprising, even to me. It seems like every week is something new and bizarre: attempting to use mouthwash for moisturizer, wearing a mismatched slipper with a shoe, wiping with a towel; one thing is clear: mom's world is losing order at a rapid pace.

What happens next? I don't know. One of the scary parts of this disease is not knowing what lies ahead. As 2015 comes to a close, I wonder what 2016 will have in store for my mom.


  1. Thank you for your honest comments about life caring for your mom. It's nice to know I am not alone.

  2. This may sound crazy but I took my Granny to Transylvania.

    After caring for my 94 year-old grandmother with latter stage dementia at home for two years, I relocated her four months ago to full care nursing home in Transylvania, Romania. I visited her everyday for the first two months in order to make sure everything was going to be fine. She has settled-in better than I could have imagined, she really enjoys her coloring and knitting. Now I’m back in the States and Skype with her regularly, not an easy decision for the family to make the move, however, in hindsight it was a better option than the “spend down” approach and lose the house. (Which is now rented and provides supplemental income for her.) The strain of taking care of her along with raising three kids under 10 years old was too much for us. The idea of selling the house and spending the money down to afford state care didn’t seem like a feasible option.

    Here is what I found:
    Room, Meals and Medications.
    -$2250 - $2500 per month.
    -24 patients 16 staff.
    -24 hour care.
    -Skype available.
    -Video cameras in common areas.
    -Food prepared on site (good food!)
    -English Speaking Doctor, Nurses.
    -Activities: Coloring, Painting, Crocheting,
    -Music and Games.
    -Modern newly constructed building completed with EU funding.
    -Safe serene neighborhood, nice views.

    Feel free to email me if you would like to know how we did it.