Tag: dementia personality changes

Help with Healthcare is a Great Place to Start

Staying at home has given me a lot of time for Spring Cleaning. I finally went into the last box of my parent’s papers this weekend and found this note from my Mom.

When my parent’s were still coming over for dinners on Friday and we recognized something was amiss, but were unsure what, my Mom asked if I would join her for the annual physical. She had mentioned that they were having trouble keeping up with the medicines and she was worried about my Dad … would I join? This was the note she gave me summarizing all of their medications. I attended and sat quietly and watched as concerns were raised and then mostly dismissed.

Within a year, my mom had a minor stroke and she readily accepted my rides to the doctor. However, this was the beginning of the trouble in some regards. My Mom was in disbelief that she had a stroke, and started to challenge that I was making it up. She began to debate me on the way to the appointments when I would simply report that we were going to see the neurologist. When she asked “why” and I reported it was because of her stroke, she would guffaw in disbelief. At the appointment, she argued with the neurologist. Good times. ; <

I wish I had know about Anosognosia. From the Stroke Connection: “Anosognosia (pronounced an-a-sog-NO-sia) refers to a person’s lack of awareness of their own motor, visual or cognitive deficits. It can happen in people with stroke, traumatic brain injury, multiple sclerosis, Parkinson’s disease, Huntington’s disease and Alzheimer’s disease.”

Looking back, I realize that even just stating that she has a stroke created an emotional response in my Mom that left her feeling like I did not have her best interests. She became very protective of her information and in return, insisted that she could manage her own affairs.

I learned over time that my parent’s responded with emotion to information or events. Any information citing they were unable to manage their own health and welfare pushed them into a defensive mode. If I arrived for a visit stressed, they would absorb my anxiety and we would have a terrible visit.

During this time my siblings and I watched as:

  • Their licenses were revoked and they continued to drive their cars;
  • They failed to pay their bills regularly and ran into issues with water and electricity;
  • Ultimately, their retirement community threatened to kick them out if they would not move from independent into the assisted living community.

I was ready in the wings when it was time to act, but it was more than two years before I was allowed back in to help. When I did re-enter I had learned a lot about how best to support and respond to my parent’s needs.

The current state of affairs may be a bridge that opens to invite you in to help. While many families are isolating themselves from their loved ones to protect them, others are including them in the shelter in place orders.

May you and your family find peace, joy, and common ground on which to move forward. Wished.

What I Wish I Knew When Dementia was Diagnosed: Find Joy in the Journey (#3)

journeyjoyThe last of the three things I wish I knew when my parents were simultaneously diagnosed with dementia was how important it was to find joy in the journey for everyone.

The care aspect for me, unfortunately, eclipsed my recognition that my time would have been better spent enjoying my parents. I spent a lot of time managing medical appointments and follow-ups, and I wish I would have instead used it to take Dad to a movie, or play cards with my Mom.

My parents thankfully had the means to pay for me to bring in an Aging Life Care Manager, but at the time I didn’t even know they existed. What I do know is that once I finally learned and recognized how they could help, I had already spent weeks of personal time trying to manage medical issues for my parents who could no longer be their own advocates.

After bringing in an Aging Life Care Manager, I saw how they could find a solution or resolve an issue that was taking me hours to troubleshoot. They are typically social workers and Nurses who are trained and certified experts in aging well.  You can search for one in your area here. 

I still remember the ache of missing my parents when they were sitting in front of me. The dementia had changed their personalities and behavior but often glimpses of the parent I knew would shine through.

There were hilarious and devastating moments.  I learned how to laugh and bring my parents in on the humor and worked very hard to shield them from the moments when my grief would bring me to tears.

You don’t know what you don’t know (and I certainly didn’t at the time). I hope my three wishes can help better serve you and your loved ones after a diagnosis of dementia. Refected.

Difficult People and Dementia

see through boxers

When I hear the statistics about older adults living with dementia, I immediately dismiss them because I believe they are just too low. I know there are many people living with dementia that were never diagnosed and so they have never been counted.

I understand why families choose not to pursue testing. However, I also know that there are so many factors that could contribute to create symptoms of dementia that some might be living with it needlessly.

There are a host of drugs that can alone or in tandem with other drugs may imitate dementia (The Washington Post).

I recently was involved with a family who were very concerned about their father. He was explained to me as a “very difficult person.” As I met with him and the woman who helps him out regularly, it was very clear to me that he had some form of cognitive issue. However, all of those around him are just chalking up his behavior as a personality quirk. The family confirms that he did not always behave in this manner, but over the years he has got more ‘difficult’.

As I was talking with him about how I could help with some of the daily money management issues it was clear he did not comprehend where some of his income was coming from — some was from military service and had been coming to him for over 60 years. There were several small things that demonstrated to me he was having trouble comprehending and processing the information. The fact that he has been unable to pay or manage his day-to-day finances is a big clue. So often I am called after there has been a financial boo-boo that was too glaring to ignore any longer. Ideally, you don’t want to strip them of their control, but just layer in some help.

My final clue was that when I met him, he was in his boxer shorts. He lives in a high-rise complex and was down in the lobby talking to a neighbor when I arrived. As we return to his apartment, I find that I can see right through his mesh boxers to skin. I mentioned this to the woman who is helping him on a regular basis and she confirms that she will ask him to put on a second pair before they leave for lunch. He is intelligent and curious, and as a man in his 90’s, I don’t think he recognized that he is walking around in public in his underwear.

I recognize all of the reasoning we used in my family. You want to respect and honor an individual, but often, it seems to reach the point of failing to possibly address the source of the behavior changes. Maybe they are caused by medication or even hearing loss (you don’t understand what you don’t hear.) For a variety of reasons, I ask that if you find yourself in this position, you advocate to get some medical attention to eliminate possible causes for the change. Suggested. 

According to the World Health Organization: “Dementia is a syndrome – usually of a chronic or progressive nature – in which there is deterioration in cognitive function (i.e. the ability to process thought) beyond what might be expected from normal ageing. It affects memory, thinking, orientation, comprehension, calculation, learning capacity, language, and judgement. Consciousness is not affected. The impairment in cognitive function is commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation.”

Shining through a dementia diagnosis

A recent photography contest awarded three winners for their self-portraits. All of the contestants have dementia or Alzheimer’s and was organized by the Bob and Diane Fund.

demenitaphotowinner
Elia Luciani’s self-portrait from a mirror on a dresser covered with family photographs. (Elia Luciani). Please make sure to check out the photo behind Elia in her self portrait.

As I poured over the image, I immediately broke into a laugh when I saw the portrait she has hanging on the wall behind her. Not only is family an obvious piece of the photographers sense of self, but I have to assume that is her with her hands above her head making a silly face in a similarly set-up self portrait by someone else … maybe even a husband.

I savored the moments when my gracious mother shined through her dementia. There were days when she immediately knew me and would talk about the family, or reflect on what my dad would have said if he were still alive about something fantastic in my life that I shared with her. She wasn’t able to ever perceive her cognitive loss, but just knew that “her brain was bad.” I missed her terribly when she was alive, and that loss carries on with me now that she is gone.

I hope you will take the time to view the winners and honorable mentions. It’s inspiring to see how many are living with, adapting and shining brightly after their diagnosis of dementia or Alzheimer’s. Awed.