Many of us have been seeing a parent struggle with their memory and ability to manage their own affairs long before there is ever a diagnosis.
It took time for my Mom to adapt to having me pay the bills and help her. She felt that she was managing just fine. My Dad recognized she was having trouble and asked me to help. When I started I had trouble learning how to assist without offending my Mom. My Mom never recognized that the stroke she had impacted her memory or her ability to manage. She would tell me her “brain is bad today” but that wasn’t impacting her ability to manage her life (in her own mind). When I reminded her that she did have a stroke, she would accuse me of making it up.
I slowly worked to gain her trust by doing things in tandem that she asked for help on. I found the less I pushed, the more opportunity to help I was given.
When it came to the mail and the bills, I would take the piles of mail that were lying around and triage issues as I uncovered them. Thankfully, my parents added me to the bank account so I could reverse engineer many of their household finances. I visited with a large purse that allowed me to easily drop in piles that were dispersed around their home.
One day I walked in to visit, and my Mom had created a mail pile for me that included a bill and a check. She even put a label on the pile for me. Earned.
My father in a moderate stage of Alzheimer’s had a tumor on the back of his tongue. Knowing our parents were doing better together than they would alone, and in the hope that we would eliminate the pain my dad was feeling but could not verbalize sent us on a path to try and treat his tumor. After a week of medical visits we saw that our dad was not up for a fight with cancer. We worked to find him some relief through hospice care. Thankfully, his end came quickly.
When my Mom broke her hip in her Memory Care community and ended up in the hospital, I knew the end was near. The recommendation was to perform surgery but that required we lift the Do Not Resuscitate order. My mom no longer knew my name and I wondered if the stress of the trauma resulted in another stroke. I had to repeatedly ask that we let “nature take its course” while the hospital kept trying to certify my mom for surgery. My mom was clear that qualify of life was more important than quantity, and I knew the surgery would be painful and not provide improved quality to the rest of her life. Thankfully, the medical team agreed that she was able to survive surgery and we moved her into hospice care.
I still end up in tears recounting both of these stories, however I know it is important to make sure other families know that it could be one of the greatest acts of love you offer by taking the path of least medical intervention. I’m glad to see Dr. Geoffrey Hosta share his medical insight that reaffirms the choices my family made. At least I know we did our best to honor their end-of-life wishes. Reflected.
I was recently asked this question at a Caregiver Advisory Panel and there are 3 things I wish I had known when dementia was FINALLLLLYYYY diagnosed. The reality is that many things can cause memory issues and it’s important to seek out a doctor to help determine if there is something that could easily resolve cognitive issues. There are many times when a medication conflict or a vitamin deficiency can be a root factor.
I had two parents who were simultaneously diagnosed with different types of dementia (Mom was Vascular/then Multi-Infarct; Dad was Alzheimer’s). While my Dad seemed to understand something was wrong, and a few times over the course of being his adult family caregiver he asked me about Alzheimer’s, my Mom patently denied having a stroke which led to her initial vascular dementia diagnosis.
I thought she was just being stubborn which made things pretty difficult for all of us. When I learned about anosognosia, a word of Greek origin that roughly translates to “without knowledge of disease,” things made a lot more sense to me. I had learned to adapt because my Mom would not, but then once I learned of this, I understood that she really COULD NOT adapt. In general, the person is unaware of their condition and unable to accept it.
My Mom was not simply in denial or being stubborn, her brain could not process the fact that her thoughts didn’t reflect reality. I did recognize that she would often confabulate information. Sometimes it was hilarious and other times it was tragically sad.
Knowing this can provide some insight into how you can best help someone diagnosed with dementia. I hope it can help make your journey with your loved one a little easier. Reflected.
I know I’m not alone when I somewhat wish there is a magic age at which we can eat whatever it is we want and it doesn’t matter any longer. Unfortunately, it’s not as we get older.
I do know that changes in our sense of taste and smell may impact our appetite, For some it may mean to eat and drink less. In general, I have noticed that around 70 most adults either seem to be underweight or overweight. Both have different complications to aging well.
When it comes to brain health — extra weight, high blood pressure and diabetes are risk factors for strokes. My mother had a minor stroke that left no physical reminders, but stole her short-term memory and changed her personality. She was always thin and lived on a diet that was high in fat with her go-to dishes being breakfast sausage in the morning and fried chicken at night.
In general I tend to follow the Mediterranean diet but freely admit I also love sugar. I know that moderation is the key and I can never eat too much fish. I also wonder if that guideline will change in my lifetime given concerns over plastic in water.
If you are caring for a loved one with memory loss, maybe it is the time to give them what they want to eat. With many forms of dementia your taste changes and getting someone to eat anything might be a challenge. The most important issue is to ensure they aren’t dehydrated. That can help brain function and minimize the issues for someone dealing with memory loss.
It’s never one thing, but the ideal that we need to continue and maybe even work harder to eat better as we age is a habit and mindset I am working to adopt. Admitted.
After caring for two parents with dementia, what I believe is that most doctors lean toward life extending measures and often don’t stop and consider the outcomes beyond the immediate resolution to an issue.
I watched as my Dad recovered from hip surgery and was cognitively a different man. He was in great physical health before the surgery (he broke his hip playing racquetball), but we all noticed a decline in his ability to hold a conversation or discuss the finances afterward. He was eventually diagnosed with Alzheimers but the years leading up to his diagnosis was filled with dozens of visits to primary care physicians, and even a neurologist, who dismissed all of our concerns about the changes in our Dad’s thinking and behavior. There really wasn’t a choice about the surgery to make since he was in good shape and had not been diagnosed cognitive issues, but the drastic change has me wondering about surgery later in life. My Dad was 76 when he had this surgery.
When Mom fell at 83 and the orthopedic surgeon demanded I lift Mom’s “Do Not Resuscitate” order so she could perform surgery, I balked. I had to ask for the social worker and an internist so I could convey that there is no way my Mom would be in a better place after surgery. She was living in a Memory Care community, had clearly had another stroke and had no idea who I was any longer, and mending her hip would most likely be too difficult for her to survive. As I was pushing back for them to give me options, they worked on getting my mom approved for surgery. Thankfully, the testing ultimately proved she would most likely never make it through the operation. I was able to follow the wishes she conveyed to me over decades as well as spelled out in her medical directives. Mom was moved into hospice care and died two weeks later.
What frustrated me was that there were no discussions about outcomes, just a swift recommendation to fix what was broken.
Too many families have found they end up with increased medical expenses and loved ones that are living, but don’t have the quality of life they expected after surgery in later life. Some admit that they wish they had know both the good and bad possible outcomes — but that isn’t currently how most medical consults currently work.
A few Emergency Rooms are now adding in a “Geriatric Team” to better serve those individuals coming into their hospitals and have a lot more to consider than just fixing the obvious medical emergency. The most important consideration is the what could happen and the life to be lead after. Should you be in this situation, please demand you get both the best- and worst-case options. Recommended.
I know you have heard or seen a lot about the risk of a fall. It seems like the smallest of worries when you are dealing with concerns over personal and financial safety. However, it looms as one thing that changes EVERYTHING for many of the clients with which I work. It was also the pivotal event that preceded my mom’s death.
For my mom, ending up the Emergency Room after a fall in her Memory Care community resulted in another small stroke (or maybe two). While the doctor suggested surgery, I struggled with the idea that if she emerged from surgery, she would actually be cognitively worse and have to manage through the pain and recovery. She didn’t recognize me at the hospital and she was no longer swallowing her food. While the medical solution was surgery, I was advised to tell them she would prefer to “let nature take its course.” The initial tests confirmed that she was too frail to survive the surgery and she moved into hospice care. Unfortunately, my experience is more common than most realize.
According to The Washington Post, “researchers found that frail older women who broke hips were unlikely to fully recover their prefracture qualify of life, even after as many as 10 years.” Another study from the Journal of General Internal Medicine found that only 31 percent of the cohort they followed after breaking a hip recovered to their prefracture ability. They did find that many of the adults were already frail and had trouble walking, dressing, or bathing before the fall.
There are several things that can be done to minimize the fall risk and include:
Get exercise. A variety of types of exercise can help from strength training to aerobic activities. Getting someone who has never exercised to exercise can be a fools errand. My mother never exercised but was very active and loved to walk, so we worked to get regular walks. When she needed to move into a Memory Care community, we found one that allowed her to freely (and safely) walk the grounds.
Take Fall Prevention Measures. Remove trip hazards like area rugs and keep the floor tidy. This is a ‘no brainer’ that can be harder to manage if your loved one is resistant to give up the rugs they have always had in the hallway, or if they don’t value a tidy room.
Eat Well. From addressing any vitamin deficiencies like osteoporosis or neuropathy to maintaining a healthy weight — all are contributing factors to better well-being and fitness.
Stop Smoking. Apparently they have found that smoking delayed the heal of a fracture!
I figured being over-prepared is the best defense. The smallest of falls can be the one event that blows up all of your well-made plans. Maybe it’s time to consider how to incorporate ways to combat fall risks into your plans. Recommended.