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)

You have been diagnosed with Dementia. Now What?

I am guessing that many of you share my fear of dementia. For those of us with loved ones who have lived with it, we know how devestating it is for the individual as well as the loved ones that surround them. But it doesn’t have to be. Once diagnosed, you have so much opportunity to direct, manage, and guide your life.

When the outcome wasn’t quite what you wanted.

I believe that the numbers reported are low because many people just don’t pursue a diagnosis. It is important to get a diagnosis for many reasons. The first is planning. If you know what you are facing you will be better prepared to plan the rest of your life.

As a Daily Money Manager who works mostly with individuals who have cognitive impairment or dementia, I know that not planning ahead or documenting personal wishes about future care and life choices most often results in guilt for those around you that will help. How will they know what you want if you are not explicit?

I know this after being the local adult child caregiver to my two parents with dementia. My parents had advanced care directives, but the most valuable guide for me in their care was the conversations we had around the dinner table. I knew that my parents wanted QUALITY of life over QUANTITY.

When my Dad was diagnosed with a tumor on the back of his tongue and in a moderate stage of Alzheimer’s, nothing in his care directives spoke to such an unusual situation.

When my mother broke her hip and the Doctor wanted to lift the Do Not Resuccitate order at the hospital to operate on her, I knew she would want me to tell them to let nature takes it’s course.

Ohhhh, but I still have guilt plaguing me about my decisions. I made the best decision I could at the time with the information I had.

The best way to ensure you get the care and support you want as you are living with dementia is to provide written (or video) of your specific care wishes. Use real-life sceanarios around you to tell someone what choice you would make if you were in a similiar situation.

Even if you have estate plans in place, now is the time to visit an attorney to update your plans. There are a variety things you can do to be an active driver for the rest of your life.

There are a wide variety of adults living well with a dementia diagnosis. Check out my favorite champion (who has gotten 3 advanced degress since being diagnosed more than a decade ago under the age of 50) Kate Swaffer https://kateswaffer.com/. Awed.

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.)

Dementia and it’s troublesome sidekick Anxiety

anxiety

The speed at which my Mom could bring me into her anxiety was one of the most alarming shifts in our familiar dynamic. Growing up, my mom was the calm, low-key fixer. In the military life in which I was raised with a dad that was often gone, mom ran the household and raised four kids. She was as adept with a hammer and nails as she was with a spatula and pie pan. So when I started to get panicked calls from her, I usually found myself jumping in a car and driving over to visit. I figured it was now my turn to be the fixer.

There were a lot of personality changes over the years, but the anxiety was one of the issues that troubled me most. I learned when she was anxious how to not join her where she was and redirect to a calmer option. I learned to not disagree or debate what she believed, but also not join in the alarm. In the beginning, I would just excuse myself for a few minutes so I could reset my demeanor. Later, I would suggest something we could do together that would change the setting and take her focus to something else.

Puzzles were a regular feature of mom’s room in Assisted Living. The simple act of setting it up, finding a piece or putting it away always brought calm. When it was nice, we would go for a walk in her community, and some days we just got in the car and would complete a simple errand.

The “therapeutic fibs” are often recommended for those that can’t break the cycle of anxiety they are in. I really struggled with this idea initially but found that the truth teller in me was not helpful in many situations. The most difficult were my mom’s calls about dad being in the hospital and needing a ride to visit him after he died. Neither of us needed to relieve his death over and over and I found the suggestion of a visit to dad calmed her down and let her focus on what to do before I would be coming over.

As a last resort they may prescribe medicine that can help. There were several times in the early days when the doctor encouraged us to use the Ativan she prescribed. When the Life Care Community my parents lived in forced their migration from Independent Living into Assisted Living, I dissolved the pill in a glass of Coke. I started out offering the medication to her, but she was suspicious and would refuse any medication. It’s kind of humorous to me now to tell you that she was so anxious, she wouldn’t take the pill that would help her anxiety, but that was our reality.

Dementia is hard on more than just the individual diagnosed with it, and because our loved ones are usually unable to adapt to the changes happening in their brain, it’s up to us to adapt to help them. Encouraged. 

Is “rational suicide” the only option?

death

For those of us caring for loved ones with dementia, we are often fighting a battle to honor their wishes and ensure the best life they can lead. My mother started joking about how we should take her out in my early 20s. I lived near my parents and saw them two and three times a week as an adult. My life as a caregiver started in my late 40s.

My Mom was the most vocal. She would often see something and say “If that happens to me, take me out.”  She gave me choices over the years from “push Granise’s chest on me” to “put a pillow over my head”.

As the dementia started to win, I had many discussions with my siblings over my angst. Mom was very clear, but I had no way to honor her wishes … without possibly going to prison.

I have talked about many of the choices we can make to better align with a loved ones wishes previously, but am always happy to share for anyone struggling with something right now. Please know you will make the best choice you can with the information you have today. Those you are caring for are lucky to have you in their life.

If you have something you’d like to discuss, put your notes in comments and I will respond (just put PRIVATE if you do not want it shared as a comment on this post).

Apparently, there is a growing movement for “rational suicide”. You can learn more about this in an article from The Washingon Post. I have internally grappled with this idea for years. I applaud the move to assisted suicide, but someone with any form of cognitive impairment doesn’t qualify. I think this is incredibly unfair, but have no idea how we solve it.

I in no way want to diminish the move to help individuals that are suffering with suicidal thoughts. I believe it is a mental illness that has sadly hit very close to my own home.

So now I feel compelled to give air to this topic. We should not be forcing people to commit “rational suicide” if they have passed a threshold in which everyday living requires them to rely on others to be. I know I would LOVE an option as would many of the individuals and families I work with daily.

Anyone out there with some options? Wished. 

The road is rocky for all the travelers.

I remember the moments of joy when things felt normal. Whether it was taking a walk on a nature trail or having a conversation in which my mom shined through.

I also remember the moments when the loss was so noticeable I had to leave the room to avoid puddling into tears.

I was the daughter. I can only imagine the intensity of loss with a spouse. Finding a way to manage the journey for everyone is the most difficult challenge for both those diagnosed and those acting as care partners.

It’s easy to get distracted by trying to reach for a destination, but as I learned, I needed to be in the moment, not charting out what’s next. That can be difficult in our world that has evolved to an “always on” mentality. I still have to remind myself of this with my friends and family.

This is just a note to be kind to yourself. I made many mistakes, and most likely, you will too. However, there are many individuals that have no one by their side helping them. It’s not an easy road and your loved one is lucky to have you on this journey with them. Be kind to yourself. Reminded.

Be Kind to Yourself.