Dementia: 1st Incident:
Imagine This Happening To You: You hear Mom yelp from the bathroom and run to check on her and find her irrational and quivering on the bathroom floor. You ask her what the trouble is and all she says is, “Noooo!”
This is what happened to me. Fortunately, my brother is an MD. After hoisting Mom onto her bed, I immediately called my brother and asked him what to do. He asked a few questions to make sure she wasn’t in a life-threatening condition and told me to let her rest for a few hours but to keep an eye on her. Four hours later, no change, so I called him again and he said, “Get her admitted to the hospital.” It turns out this first incident was related to a recurrence of her breast cancer. Small tumors on the inside of her skull were putting pressure on her brain. It took a week before she was coherent again. Fortunately, the doctors found markers for Estrogen and Progesterone so the cancer was effectively treated with Tamoxifen. However, it was only the beginning of the cognitive problems.
Dementia: Additional Incidents:
Having successfully met the cancer challenge, we thought we were out of the woods, but more problems showed up. Mom appeared listless and tired. At first, we thought it was nothing. After all, a little tiredness is nothing out of the ordinary. We monitored her vitals and found out she was at risk for Congestive Heart Failure. Mom needed 3 things: Food, water and exercise. If any of the 3 was neglected, complications would rapidly ensue. So I needed to monitor all three and make sure she stayed in the safe zone. We recruited a few friends and church members to help and got the situation under control. However, the first traces of dementia began to show up. Her blood pressure cuff and O2 sensor went missing as well as important medical paperwork about her condition. After some searching we found everything, but realized that relying on Mom’s personal methods for putting things away was no longer reliable for 2 reasons:
- She no longer had a logical system for putting things where they could be found by others and,
- She couldn’t remember where she had put things herself
So we had to make a few rules that everyone could follow:
- Medical and Financial papers went into a big red folder that everyone could find, whether Mom, family, or caregivers.
- Medical equipment was placed on one side of her bed so it could always be found at a moment’s notice
(Of course Mom objected that she already had a system that had worked fine her whole life. “If it ain’t broke, don’t fix it!” It took several rounds of conversation to have her realize that her old ways were indeed broken and did indeed need fixing).
Additionally, there were emotional complications with others. Her Texas boyfriend visited and sided with the person she used to be, rather than helping manage who she had become. Later on, when he was in the hospital, and she insisted on visiting him, got injured, and wound up in the hospital herself. Shortly thereafter he died and things became simpler.
Dementia: Facing Realities
By this time, it was becoming clear that we needed to think seriously about transitions. Mom would need to sell her house and move into an assisted living facility, partly to be relieved of housekeeping but more importantly so she could be monitored medically. All sorts of things needed to be gone through:
- The house needed to be cleared, sold and what was left needed to be transferred to the assisted living facility
- Books and Art needed evaluation and sorting to be sold or gifted
- Heirloom furniture needed to be shipped to appropriate siblings
- I needed to find a new residence other than the back cottage I had been staying in, but still close enough to visit regularly
All in all, the transition process took several months before we had established Mom in the new facility. My sister’s organizational skills were a Godsend. We couldn’t have managed without her. Actually, all my siblings pitched in and did what they could to accomplish the transition. I am grateful for family unity and feel sorry for families who lack the forgiveness to come together in such times of need.
Dementia: Cognitive Decline
Now Mom is safe in an assisted living facility. This is fortunate, as she is losing her memory. About twice a week, I get a phone call asking where I am and if I am all right. I answer the same answer every time, but she forgets in less than a week. I told her to write it down on a sticky note and stick it to the television. That helped a little. Just recently, she was out driving and forgot where she was, needing to be escorted home by a kind police officer. Consequently, we needed to revoke her driving privileges, gift her car to my brother, and take on transporting her for errands since could not longer do so safely herself.
Most people have no idea that they will eventually face a similar problem, whether with a family member or in themselves. I hope my experiences with my Mom help others to prepare.