I recall the many visits to the neurologist with my mom after her stroke. We learned this was her second stroke. The doctor guessed the first one happened over a decade before but went un-reported or un-diagnosed. The second stroke began with dizziness and after watching my mom try to walk, my dad drove her right to the emergency room. The second stroke left no physical reminders, but there was a noticeable difference to my mom’s memory and how she processed information. They told me she had an ischemic stroke.
Over the six-months of visits, we really focused on understanding the cause and how to prevent a future stroke. The doctor never explained how the stroke might impact her ability to drive, manage her finances, or retain information. She also never mentioned that based on my mom’s behavior, that she probably had Vascular Dementia.
When I was talking with a client last week, he stopped me to ask why I used the term “vascular dementia” to describe his partner. She had a stroke and when I spoke with her, she had trouble getting out her words and he admitted that she had had trouble with her short-term memory. I’m not a doctor, but I shared that she seemed to present like my mom did after her stroke.
The interaction reminded me just how difficult it was to get my mom and dad diagnosed. The first neurologist for both of them never even used the term “mild cognitive impairment”, although to me and my siblings, we all recognized something was different in their behavior and thinking. Had we had an earlier diagnosis, maybe we could have developed a better plan of care to have them live with purpose and meaning for the rest of their lives.
I hope if your loved one has had a stroke, you might have more information to understand the impact and how it might shape the coming years. Every one is different, but I worry that the move to shorter medical appointments will make it even harder for the next wave of caregivers to come. Wondered.
One of my favorite cartoons is Scooby Doo. When I arrive to visit my Mom today, I feel another mystery lurking. A vase of flowers is in my Mom’s apartment. I don’t dare ask where they came from because she will be unable to give me an answer. This cycle has repeated itself dozens of times in the past few years. If only she could share a memory. Those days are long gone and I’m happy she remembers me. Most conversations are me sharing my day or recounting a memory from our past.
The mysteries I face usually center around something that is missing — like her PJs. We would buy new pairs and they would disappear from her apartment within days.
Today, a vase of flowers has appeared and I’m curious where it came from. I feel like Daphne from Scooby Doo (except for the rich and glamorous part). She was never one to solve the mystery but was able to help through some clumsy act. I’m hoping I will fall over a clue as I visit with my Mom. Today, I am unable to unearth anything.
It’s nice to know that someone shared an act of kindness on my Mom. Even if she doesn’t remember, the positive energy shared on her spills over to everyone that visits. Pleased.
One of the most frustrating factors of being a family care giver to someone with dementia who lives in a community is the amount of information you just don’t have. You want so badly to ask your family member how they are doing and what’s been going on, but they don’t remember. It took me at least a full year before I stopped asking and wanting to believe my Mom’s reports on her day. It finally sunk in that my Mom probably wasn’t eating breakfast after she was moved into Assisted Living. Some days she still tries to tell me she cooked herself something on the stove. For those of you familiar with Assisted Living, they typically don’t include cooking appliances.
The personal assistants that have been added share small tidbits with me when I stop by and ask, but I know most of their days are spent sitting in the hallway waiting for my Mom to emerge from the apartment. I would love to have a GPS device on my Mom to see what her day looks like and where she goes. I know she’s sleeping a lot more and when there are events with music, the personal assistants say they can usually get my Mom to join them.
We are worried that one day we are going to get a notice telling us that we have to find a new home for my Mom. I was called in to discuss my mom’s “unbecoming behavior” and told if we can’t get things working better, we will need to look for a new home that can better care for my Mom given her mobility and dementia. So far we have worked with the community to make the following changes:
Adjust the medication. We are told she is now getting the highest doses they can administer to a resident in Assisted Living. It can take several weeks to see if the medication helps manage my Mom’s behavior. I appreciate how the community phrases the concerns as a “dignity issue.” My Mom seems to be mellowing and I haven’t gotten any reports in over a month about any “unbecoming behavior”.
Hire personal assistants. As I have shared, my Mom really doesn’t like and resists the idea that she would need help. However, we are paying for personal assistants from 1 – 9 PM daily. We had to make changes to the individuals assigned and I’m glad I’m able to stop by, meet them and speak with them. Right now it’s the closest I can get to having some insight into my Mom’s days.
Right now, things seems to be improving. However, if they start to digress, we may have to look into checking my Mom into a psychiatric hospital. While not something that happens in every case, many have had to seek this solution to find better medications manage through this stage of the disease. I do believe that if we go that route, the only option for my Mom will be to return and be moved into the secure memory unit. There is some issue with the doses of certain medications and Assisted Living,
We are doing our best. Dementia is just a cruel disease.Endured.
After rolling through the Christmas card list, one, my great Aunt Mimi’s, was returned. My mom asked me if I knew where she moved. “Umm, Mom, Aunt Mimi died several years ago.”
Thus began the discussion on the family tree. Over the past few months, I’ve spent hours pulling together and going through both of my parents’ family trees to help provide a visible cue to the family members. These questions have come up a lot over the past two years and having this written down with birth, death and the lineage has been helpful for my parents to re-establish a context to names they know, but just can’t quite place some days.
With four kids in the family, you get used to being called one of your siblings’ names. However, over the past few years, spouses’ names and even the recollection of grandchildren fades in and out. My children are used to getting asked their age at least 3 times every time we visit with my parents. I have gotten over hurt feelings when they don’t remember I visited or called.
The memory loss is obvious to me, but to date, neither one of my parents has been diagnosed (or has shared they were diagnosed) with anything that can explain their mental states. Flummoxed.