Tag: dementia disease

Managing Medication and Pill Aversion

There seem to be two kinds of people in this world. One that uses medication and appreciates the benefits, and the other that has a general aversion to taking medication.

I fall in the second category and was happy when the one prescribed medication I was taking (a baby aspirin/day) fell out of favor. Well, I suppose there was the science to it, but when my doctor said to discontinue taking it, I was happy to comply.

I see many people struggle with medications, including those with no cognitive issues. I think it’s too easy to miss a dose and think pill caddies are helpful solutions.

A reader asked if there were any simple books for medication management for someone diagnosed with Alzheimer’s. While I’m not trained in health management, from the brain health training I have done, I do know that starting a new habit is difficult for someone diagnosed with any form of cognitive issue, include all dementias.

The bubble packs are dated and have time stamps that are easy reminders to follow and track.

There are two simple options to help manage medication as well as see if and when someone has missed a dose. The first is the pill caddy and the second is bubble packs. For anyone with more complicated medication scheduling or a lot of pills, the doses are packed with dates and times and come on a roll or in a blister pack.

I always consider options that give an individual more control over their life. I think those two options are helpful in managing medication and provide simple cues on when to take and if a dose was missed.

For those that are averse to medication, but diagnosed with something that medication can prevent or abate, I hope family and loved ones will speak up and help the individual understand the choices they are making and the potential risk to their health. One of the entitlements of being American is that we are given the opportunity to make really bad choices for ourselves. However, when it comes to our health, sometimes our spouses, siblings, and friends need to recognize that someone diagnosed with a cognitive issue might be unable to make a reasonable choice. The act of not taking that medication might result in a need for a higher level of care or other health complication that requires medical intervention or nursing care.

I hope if you have someone in your life in this second category, you will at least share your concern and give them the opportunity to explain their choice. Once diagnosed with any form of dementia, I see many deal with loss after loss. They have lost friends who fell away, the ability to perform at a job they loved, and even just manage the simple act of cooking a meal. Is the refusal to take the medication one place that gives them a sense of control? Wondered.

Aging in Place and Social Distancing

I am thankful that right now I don’t have to balance my children’s needs, my client’s needs, and my aging parents. My parents have both taken a celestial departure from this earth, but in just imaging them being around now … I feel my chest tighten.

I am working with several families who have a loved one that someone from my company works with in the metro-DC area. Our goal is to support our clients by assisting, managing in tandem, or by just handling the day-to-day financial matters (bills, home maintenance, long term care and insurance claims). After caring for two parents who had different types of dementia, I am very attuned to how much it means for them to live their life and manage their affairs.

So here we sit with several clients who still live alone in their homes. Some have stopped all external visits from health care managers, cleaning services, and personal care assistants while others doubled down and now have 24/7 help and care in their home.

There is no right or wrong. There is just right for each individual.

The initial two week social distancing came and went. Now we are looking at near isolation for some or escalating care expenses for possibly three months. I am curious to see how we all emerge and adapt after this experience.

What I have noticed in working with adults with cognitive disabilities is that the more they interact with others, the higher they function when we sit with them to do basic bill pay tasks. However, most of those isolated at home are now getting regular calls from the family, and are having to manage in their home all on their own. In calling many of them regularly, they are doing fine and have managed to adapt to our virtual support.

Will any of us win this experiment? Will those on their own emerge stronger after showing us all how they can manage? For those that could not manage on their own, will they do better than those in communities when it comes to exposure to Covid-19?

All I know is that we are all doing the best we can with the information we have at this time, and within the resources we have at our disposal. We may just see how well our American ingenuity shines at a time when modern medicine can’t protect us.

I’m looking forward to being able to see this one in my rear-view mirror. Wondered.

After the Alzheimer’s Diagnosis: A Simple Checklist

Kate Swaffer who was diagnosed with dementia over a decade ago, and before she was 50 sent me a link to a story she wrote Diagnosed with Dementia: What’s Next? wrote back in 2015. I hope that one sentence shares the many ways that even after a diagnosis, there are years, and even decades of productive life — she was diagnosed in 2008. See the bottom of this post for links to her books for purchase.

In the hopes of making this simple, I am going to summarize and layer in some thoughts from other readers, and the research, on things you can do to help drive your future. For several tasks, I hope you will collaborate with loved ones who will listen, support, and follow through on the plan you are working to create. Creating an action plan early can help you feel more control, and provide the tools to those around you to feel confident that they are doing what you want.

Ask your doctor(s) for and collect the following:

  • Your diagnosis. You should get this information from the physician who made the diagnosis. What is it? What are some symptoms? What are effective symptom management techniques? What might you expect in 1 year, 5 years, 10 years? What changes might you expect and how might you address them?
  • Clinical trial resources. Because so little is known and we don’t have a cure, would participation in a study offer benefits to you physically and emotionally?
  • Referrals to local support groups, programs, and day-programs for engagement. Learn and ask your doctor(s) about staying engaged both physically and intellectually and it’s impact on brain health maintenance.
  • Is there rehabilitation that would benefit you? From Occupational Therapy (OT), Physiotherapy, Speech pathology, Walking/mobility rehabilitation, Dietician, Psychologist, Social worker, Specialised fine motor skill rehabilitation, to counselling, including grief and loss as well as support groups.

Create your own care plan based on the recommendations and discuss with your loved ones:

  • How to help. Make it clear to those around that it’s important they recognize you in meetings where your health, your assets, and your living choices are being discussed.
  • What you like. Do you like walking? Playing games? Going to Yoga? What are some physical activities that you enjoy doing. If you stop driving, is there a way to help you maintain this activities?
  • What do you want to be known about your diagnosis? If you are still working, how might you discuss and how do you continue in a job if you have noticed some of the symptoms of dementia are presenting in your personal and professional life?
  • Who do you designate as your personal/financial and medical advocates. They may not be the same person. While many people designate a spouse, you need to have a plan B since the spouse could very-well predecease you. Sorry, I know that is a little grim. : <
  • Would you be open to engaging in local classes, workshops, and programs knowing that exercise and engagement can help minimize your cognitive decline?
Try out the Alzheimer’s Navigator (See Red Arrow).

I found this site that can help you navigate a host of questions and issues related to Alzheimer’s, but it will help with other forms of dementia. I was surprised to find an action plan they offered that was for the caregiver … not the individual diagnosed. However, the toolkit may be a great way to have a conversation that is difficult to begin. You can do the General Assessment as a “guest” — just look in the bottom right corner of the page (see red arrow) for that option.

One of things Kate Swaffer has done is help advocate for the rights, and abilities, of those diagnosed with dementia. Now is a good time to understand what you can do to best advocate for your future. Encouraged.

What the Hell Happened to My Brain? by Kate Swaffer (Amazon)

What the Hell Happened to My Brain? by Kate Swaffer (Google)

End-of-Life Directives and Dementia

I lived the reality of managing end-of-life wishes for individuals with dementia. It is hard to navigate a medical system that is trained and geared to sustain life.

If you are in a position to care for loved ones with dementia, this article in The Washington Post is a good overview of how complicating things can get even when advanced medical directives are in place.

After witnessing many family, friends, and clients live through dementia, I am always hopeful that things will change in the coming years. The idea of assisted suicide doesn’t include individuals without capacity. For inviduals with dementia their gradual loss of capacity impacts their ability to advocate for their medical wishes.

There are now “advanced directives for dementia” but for a variety of reasons, many legal, they may not be followed.

The reality is that just having the legal documents in place and all the planning in the world is just not enough in many cases — and especially when there are cognitive issues. There is the need to have someone advocate for your needs and manage your affairs that goes beyond living in a continuing care community that provides a play to stay and food — but does not help protect and manage your finances or manage your healthcare to your personal wishes or advance directive document.

The woman in the story requested VSED – voluntary stoping eating and drinking – to end her life. She has been diagnosed with frontotemporal dementia and the continuing care community she bought into to manage her care needs has now told her they will not be able to follow her directives. Apparently, many states have ruled that food and water are basic care and can’t be withdrawn.

There are ways to find trusted resources to help manage these needs for you. I became a Daily Money Manager or basically “a professional daughter” after losing both of my parents to dementia. I work with Aging Life Care Managers that can help navigate the health issues and advocate for your health care wishes.

There are options and as these issues come to light, many more options will be forthcoming. Hopeful.

Please tell me what you have done or are doing to address these concerns (and if you have seen the in action.)

Managing Giving and Mild Cognitive Impairment

Early on, I started to notice a lot of mail waiting to be posted to a variety of charities every time I visited my parents. This was unusual since it was a different pattern of giving than the habits my parent’s held for the decades leading up to this shift.

When I read the mail, I started to see that charities were using language that said “Thank you for your pledge!” or “Can we count on you again this year?” Being of the greatest generation, my parent’s were going to follow up on what they perceived to be an obligation. Unfortunately, they didn’t remember if they did or did not pledge and just believed what they read.

I did start to realize that I was getting very similar donation requests at my own home from charities I never gave to or pledged money to previously. It is actual exploitation because they are using misleading language to trick people into giving them money. Some estimates put this figure at over $36 Billion annually. YUP, that is with a B for Billions.

I see this with the clients I work with when we sit down to pay bills. They enjoy writing checks and giving to charities. However, when I ask, they typically can’t tell me anything about how the charity will use their money, and when we look at prior giving never previously gave to them.

I addressed this with my Mom by giving her a check book that had a limited amount of cash in it so she could write checks and give to the charities she choose. Within a few months the check writing stopped. After a while she just got overwhelmed trying to manage the register and balance the checkbook. We continued to give annually each January using Charity Navigator as had been their giving habit. We recycled all the donation requests that came in the mail.

For individuals that continue to enjoy writing the checks that we work with, we build a master charity roster. We make it easy for them to see when and how much they already have given.

In general, once you give to a charity, they send you solicitation requests monthly. They also sell your name to affiliated charities. Sadly, there is no real way to stop the mail. The Do Not Mail list never worked for me, my parents, or any of my clients. Now they actually charge a $2 fee if you want to get added. The only effective way to have them stop is to no longer give. They will eventually drop your name from the list.

For charities those charities to which you want to contribute, contact them directly to give. Make your giving contingent on that fact that they won’t sell your name which is your right.

For many who are starting to feel the loss of their memory, helping them enjoy the things they can do is positive for everyone. Given.

Best wishes for a Happy Thanksgiving.

Memory Loss is Normal for Older Adults (FALSE) … so WHY get tested?

First, Memory Loss is not normal as we age and is something you should discuss with your primary care physician if you notice it in yourself. There are several reasons why someone may have memory loss and many of them can be reversed. If you don’t pursue testing you will never know if your (or a loved ones) issue can be treated, slowed, reversed.

What is normal is slower processing speed. Our brain processing speed slows down generally at 50, but we should still be able to retrieve the information. If you believe you have short-term memory issues, speak with your primary care physician and request a visit to a neurologist for an evaluation if you don’t find a cause.

Understanding if you have a form of dementia can help you know if there are trials or treatments, as well as better plan for the future. It is also valuable to family members to know if and what form of dementia a relative may be diagnosed with.

I’m writing this as I am waiting for a client who is going through neuropyschological testing right now. Halfway through we shared lunch and she asked why she is bothering with this test since “memory loss is normal in someone my age.” We had a lively conversation around her believe that memory loss was a normal consequence of aging.

When she was losing her checkbook and couldn’t find it, ordering new checks and not recalling that she did it, and sending off money over and over to a friend, I asked her if she recognized she was having some issues with her memory. She said yes and she actually mentioned it to her primary care physician. He recommended she get a blood test, MRI, and neuro-psychological testing.

So here we are.

What I do know is that the testing was invaluable to me as the primary family caregiver for my parents. It helped me better understand the gaps in thinking for their different types of dementia (vascular and Alzheimer’s). I was able to attend the reporting session and what I learned help me realize that I was going to have to change because in all reality, my parent’s thinking was very different than it was previously. How they processed, and even recalled information had changed.

It also helped us understand how long they might live, and the type of care they were going to need.

For me, knowing was better than not knowing. I know everyone is different. Shared.

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.

What I Wished I Knew When Dementia Was Diagnosed: Anosognosia(#1)

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.

anosognosia-1

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. 

Break a Habit of Drinking Alcohol #6

drinkinganddementiaOne of my big fears after caring for my parents is that should I lose my short-term memory, I will also lose the ability to know that I have had more than one, or even two drinks.

I have yet to see alcohol on any healthy diet without an asterisk next to it. I’m always intrigued to read interviews with octogenarians (and older) to learn what they chalk up to their healthy aging habits. I swear that a snifter of whiskey or brandy has been in the largest majority of those I have read.

What I do know is that the habit of “quiet hour” honed over 5 decades of marriage became a problem for my parents when they lost their short-term memory. Instead of stopping at one or two drinks, they started to drink more. It was one of the most obvious signs to their adult children that something was different with our parents.

During this period we learned that there is a form of dementia that is a result of alcohol abuse. Drinking and drug use is proven to kill brain cells faster than aging alone. You can learn more about these impacts on this page at the American Addiction Center.

At first we thought my Dad’s quietness and forgetfulness were because of the increased drinking. We later learned that he had Alzheimer’s. Had there been no habit of drinking, we may have gotten to an answer sooner.

During this time, I was able to encourage my parents to purchase Umbrella insurance. I was terrified that their actions could hurt someone and they could lose all of their savings.

If you have a study that shows that alcohol does lead to healthy aging … please share! My belief is that like many things, moderation is the key. My goal is to age without a habit of drinking alcohol. Aspired. 

Knowing the type of Dementia Helps Everyone

I didn’t handle the diagnosis of my parents well. I thought that hearing a doctor tell them they had dementia would suddenly make helping them easier for me. I finally realized that it was equally devastating to my Mom every time she was told.

For a large majority of individuals with vascular dementia – the type that comes after a stroke – they are unable to recognize their loss. My Mom had no physical changes, and for the first few months thought I was making up the fact that she had a stroke. The medical term is Anosognosia and I wish I knew and understood this when my Mom was diagnosed. She was medically unable to perceive that she had difficulty with her thinking and memory.

In the years since I lived through caring for two parents with dementia, I have found many individuals that don’t understand why a diagnosis mattered at all.

A recent story on NPR Is It Alzheimer’s Or Another Dementia? The Right Answer Matters reinforces the need to get a diagnosis. Apparently, most people default to the belief it is Alzheimer’s, and having some insight can also help the care partners manage better.

I have had a long-standing discomfort with the share of voice Alzheimer’s has taken. First and foremost is because most people don’t even know it is the most common form of dementia. I didn’t realize it until my Mom was diagnosed with Vascular Dementia, while my Dad was diagnosed with Alzheimer’s.

What I have learned is that the primary types of dementia all come with varied behaviors, risks, possible treatments and care plans. One form of dementia comes with symptoms that present more as a personality change than symptoms of dementia. In general, changes in behavior, mood, and memory should all be discussed with your primary care physician. Knowing more can help everyone and I hope you will help learn more should you be concerned about your own health changes or those in a loved one. Encouraged.