Is Your Family Dealing with Dementia in a Loved One?

Navigating the journey of dementia in a loved one can be a challenging and emotional experience. Dementia, an umbrella term for various conditions affecting the brain, manifests differently depending on the type and the areas of the brain it affects. Memory loss is a common symptom across all types, but the specific symptoms and progression can vary widely.

My Family’s Experience with Dementia in a Loved One

I had been living in Alaska for 15 years.  My children had finished school, and we had an empty nest when my mother called me from Florida. “You have been in Alaska long enough and I need help,”.  Is what my mother told me following an Alzheimer’s diagnosis for my stepfather.  After talking with my husband, we decided to move to Florida to help care for my ailing Stepfather.

My stepfather and my husband had a close relationship.  Following his diagnosis he did not want any caretakers other than family.  He welcomed my husband’s help. We moved to St Augustine, Florida, my mother and stepfather were in Amelia Island which is about an hour and a half away.  My husband began to make the drive several times a week so my mother could have a break.

A couple months after we had moved to Florida my father, in Chicago, was diagnosed with Lewy Body Dementia, another awful dementia diagnosis for us.  Soon I was spending my free time helping care for my stepfather and flying back and forth to Chicago to be with my father and help my stepmother.

In August 2017 I was with my family and my stepfather when he passed away.  Three months later, I was with my family, in Chicago, when my father passed away.  Watching two very important men in my life decline with different forms of dementia and then die from those diseases was devastating, to say the least.

Following the death of my stepfather my mother moved to St Augustine and bought a house five minutes from ours.  We all settled back into normal life without having to be caretakers and not have to watch the process of losing someone to dementia.

Another Devastating Diagnosis

A few months after my mother moved, we began to see some disturbing signs.  She was having difficulty driving and was pulled over more than once. One time she called and told me the police had her pulled over and I had to go get her.  When I arrived at the scene, she had side swiped the truck, and continued to drive away, erratically. It turned out she was wearing her reading glasses while driving and couldn’t see.  Soon after she got into two more accidents with parked cars.  She fell scam to several different scammers and we began to watch her bank accounts. After a year of this we decided to have my mother assessed and she was given the diagnosis of Frontal Lobe Dementia.  A third parent going down with dementia was a shock.  My husband and I decided to move my mother into our home and did some renovations so she could have her own space.  Once with us, we noticed more disturbing symptoms.  She was having difficulty controlling her emotions, began to struggle with planning and keeping a calendar, and she became slightly inappropriate in public.

My mother lived with us for three years.  During that time, she refused to allow us to have caregivers or “helpers,” she lost her ability to interact appropriately socially, she spent a lot of time crying and became jealous of me.  Then the falls came.  She fell many times and we were in the emergency room many times.  From the falls, she broke her leg, needed ankle surgery, broke her wrist, fractured a rib, fell on her face, and the final straw was my husband finding her face down, on the cement, at the bottom of our front doorsteps. We realized we couldn’t keep her safe and eventually moved her to an assisted living facility nearby. The guilt that followed this decision was immense for me, but I eventually worked through it.

Dementia seems to be rampant in our country and extremely prevalent in St Augustine Florida.  An interesting fact:  I was recently in Tanzania, Africa.  I was speaking to a member of the Maasai tribe about dementia.  He told me it is unheard of in their culture unless people live into their 90s.  I thought about this.  The Masai’s diet is from their farmed land and livestock.  They do not have any food that they do not prepare, hence no additives, preservatives, or chemicals in their food.  Could this be part of the reason why the Maasai don’t see dementia?

Navigating Dementia in a Loved One

From my experience, what I have seen is when a family member is in the early stages of dementia the family is in denial. They are not sure what is happening to their loved one. I have told more than one person, in counseling, that it sounds like the family member may have dementia.  I then refer them to a Neuropsychologist, who assesses the family member and gives a diagnosis.  Once the diagnosis of dementia has been made the family often needs some guidance and some objective input on the process of having a loved one with dementia. It is common to see caretakers develop anxiety, frustration, depression, and difficulty caring for themselves while caring for others. I am happy to provide needed support to families.

There are many forms of dementia, each affecting different areas of the brain and exhibiting different symptoms.  My stepfather had Alzheimer’s.  He began to forget things early in the process.  He forgot where he was driving, he forgot words, and eventually forgot who we all were.  My father had Lewy Body Dementia.  He did not forget any of us.  However, he became paranoid, acted out his dreams (including getting into the elevator of his apartment building, naked, at 2am), and had Parkinsonian symptoms.  My mother has frontal lobe dementia.  She also does not forget anything about any person she has ever met.  However, she cannot handle money, a schedule, plannings, and has no short-term memory past five minutes.

How I can Help

I feel as though I am an expert personally and professionally.  I have people who come to my office because of exhaustion from caregiving or in confusion as to what is happening to their parents or loved ones.  It appears a lot of people are in denial or don’t realize what is happening.  I am there to help with this.  I love to provide support to people who are experiencing what I have been through.  Sometimes, talking to someone who has been through the caretaking of family with dementia who also has professional knowledge is helpful.

I offer my support to those going through similar experiences. Whether it’s guiding families through the diagnosis process or providing a listening ear to exhausted caregivers, I’m here to help. If you suspect a loved one may be developing dementia, don’t hesitate to seek support—it can make all the difference in this challenging journey.

In Kindness,

MM