Empathy Leads to Compassion Then Joy for the Alzheimer's Caregiver ,Christie asked in the comments section of Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 312,100 links on the Internet. Bob lives in Delray Beach, FL.
"Bob, would you be willing to share with us if in the time when Dotty's behavior was more positive - toward the end of her life - was she only deeply forgetful or did she exhibit other behaviors such as hallucinations, delusions, paranoia? I suppose delusions could be attributed to gaps in memory - but did she exhibit symptoms that were Alz driven, but not directly memory driven?"Christie this is a very good question and others are wondering the same thing.
Dotty did not suffer from hallucinations at any time.
I did immediately think of the time when Dotty woke up in the morning, was standing in the door of her bedroom, and asked me, "when are we going home". I asked her, "where do you think we are", she answered "I don't know".
I was standing right with her, holding her hand, and said "we are home". She more or less shook her head, and then said, "there must be something wrong with me".
We moved right in to the kitchen, started our daily routine, and that was that.
It did turn out that Dotty had a urinary tract infection which explains in part why I am so militant about urinary tract infections; and, why I try to convince anyone that will listen to take the temperature of their loved one -- every day. Get out in front before the delusions and hastened memory loss start happening.
Dotty was somewhat paranoid when I first arrived on the scene. She worried about people looking in the window at night, people stealing from her, and didn't want to walk down to our neighbors in the dark because she might get "raped".
All of the above went away over time.
In the last few years Dotty was deeply forgetful, but she became kinder, gentler, happier, and more at peace with herself. This is evidenced by the sound of her voice in the podcasts, and the look on her face in the videos.
In the beginning Dotty didn't laugh or smile for two years. After we defeated Alzheimer's and the burden, Dotty smiled and laughed more and more. The changed look on her face was evident to most.
Dotty smiled more in the last several months than at any previous time AD.
I did not realize this until recently, but I slowly but surely raised Dotty's self esteem. I am not talking about compared to her entire life, I am speaking specifically about after life with AD began.
As Dotty's own self esteem improved, so did mine. So I believe you could say we rose up together. We rewired our brains together. Slowly but surely.
In my case, I had to keep reminding my brain that Dotty was capable of more than we could imagine. The we in the equation -- me and my brain.
No matter how hard I tried I could not convince my own brain of how much Dotty was capable of doing. It seems to me that the brain is one of the biggest obstacles to effective caregiving.
Before AD our brain gets bombarded with all the negative stuff. All those extremely hurtful words like "Alzheimer's is a tragic epidemic that has no survivors. Not a single one".
Never mind the caregivers, lets say whatever raises the most money. The folks that use those words, and their dupes, freely admit that raising money is the motivation behind those sick, dysfunctional words.
Sick, dysfunctional behavior like this never gets rewarded in the long run. Like my daddy once told me, "the bigger they are the harder they fall". It is already happening.
My point here is that as Alzheimer's caregivers we are already at a disadvantage when we start because our brain had already drunk the cool aid of Alzheimer's stigma.
My direct answer to your question is that Dotty did not hallucinate or suffer from delusions or paranoia near the end.
I suppose some of her symptoms near the end were Alzheimer's driven, like no longer eating. I do not think or believe she forgot how to eat. It happened literally over night. However, there were other times when Dotty was sick from something other than Alzheimer's, or on top of Alzheimer's, and she refused to eat. I will continue to think about this over time.
Up until the end, Dotty still knew me, and she still knew my brother and sister. She seemed to know her friends who visited.
If I had not been writing here all this years I would never say what I am going to say right now -- together Dotty and I willed what happened to happen.
I fully intend to write about Dotty and how her improving self esteem allowed the two of us, together, to walk the path of Joy. This is actually a new revelation that I had not previously considered in the context of Alzheimer's care.
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