You have a dementia diagnosis, now what?

Senior doctor talking with patient and tablet in officeJune is Alzheimer’s & Brain Awareness Month. It’s a good time to have a physical exam, especially if you are worried about your memory not being as sharp as it used to be or if you’re having trouble coping with daily life. If you’ve noticed that someone close to you is showing signs of withdrawal, depression or confusion, please strongly suggest that he or she make an appointment for an exam, too.

Here’s the scenario of how my husband Morris and I received his diagnosis. I’ve provided a list below it to help you tread water when you feel as though you’re drowning.


There were several indications that something was wrong with my husband two years before he was diagnosed. This tall, good-looking man, a graduate of the Wharton School of Business at the University of Pennsylvania, was having trouble calculating how much tip to leave a waitress. When we went to Spain for our twenty-fifth anniversary, Morris couldn’t figure out how much money the hotel would cost in dollars. This man, who once memorized train and airplane schedules without even trying, followed me around the city like a puppy dog as we boarded a subway or bus en route to tourist attractions.

That following fall—our daughter’s last year in high school—Morris couldn’t give directions to a friend who was taking the SAT at the high school my husband had attended in Denver. I got out the map to help him, but he couldn’t read the map. That was the moment I knew something was very wrong. When he left for a road trip to California with our son and forgot his suitcase, I sat on the stairs and cried. I couldn’t deny it any longer. I had a strong suspicion that Morris had Alzheimer’s disease, and although I pleaded with him for two years to see a neurologist, he refused.

Finally, he agreed. The doctor (I’ll call her “Dr. Fitzgerald”) asked Morris why he had come in. “My wife thinks I might have Alzheimer’s disease,” he said.

“You wouldn’t be able to drive here yourself if you had Alzheimer’s,” she replied.

Nonetheless, Dr. Fitzgerald gave Morris the Mini-Mental State Exam (MMSE, a thirty point questionnaire used to screen cognitive impairment), asking questions such as, “What are the year, season, date, day, and month?” and progressing to more difficult questions that included counting backward from one hundred by serial sevens. I don’t know about you, but I’d probably be slow on the draw to count backward by sevens. At least I’d have to stop and think about it before responding. Morris botched up that question, and he wasn’t able to draw the face of a clock either. The concept of time was already an elusive abstraction.

Dr. Fitzgerald ordered a blood work-up to rule out an organic problem such as hypoactive thyroid—which can cause memory problems—and an MRI scan (magnetic resonance imaging) to rule out a brain tumor. To tell you the truth, I was hoping for a brain tumor because at least you can take the bull by the horns and really go at the darn thing with radiation and a scalpel. Well, there was no brain tumor and his blood panel looked just fine.

A week later, just as we were investigating the cost of long-term health insurance, Dr. Fitzgerald called to ask Morris to bring in his wife to the follow-up appointment. I’m sorry to say that one of the biggest mistakes I’ve ever made was to schedule that appointment without first buying long-term care insurance. Once you get a diagnosis such as Alzheimer’s, there’s no way you’re going to qualify for long-term care insurance, which could potentially save a family thousands of dollars in catastrophic health care costs.

In the early afternoon of January 3, 2001, Morris and I sat in a dimly lit exam room on wooden frame chairs with hunter green cushions on the seat and back. He wore a sweater woven from various shades of blue and gray that highlighted his eyes. We waited for the doctor to knock on the door, the way they usually do. Morris didn’t appear nervous; probably because he didn’t think there was anything wrong with him. But my stomach was wound tight from anxiety and my lungs were working hard to expel phlegm. It didn’t help that the stale re-circulated air had a metallic odor of fear that was probably generated by patients who had received bad news.

Dr. Fitzgerald finally came in and sat on Morris’s left. She had cropped hair and spoke in a blunt, choppy cadence that matched her no-nonsense appearance. Without much of an introduction, the doctor asked me a few questions about Morris, speaking as if he were invisible.

“How is his driving?” she asked.

“He tends to get lost driving in familiar neighborhoods,” I responded, noting the twitch in Morris’s right cheek. I felt my lungs squeeze, and a high-pitched wheeze escaped from my chest.

“Here is the Mini-Mental State Exam Morris took the last time we met.”

His drawing of a house looked like a dilapidated mine shaft. Without waiting for a response, Dr. Fitzgerald turned to Morris and said, “You have Alzheimer’s disease.” Morris froze and his face turned white, while I burst out crying.


I hope that if you ever get a diagnosis such as Alzheimer’s, Parkinson’s, vascular dementia or a similar devastating disease, your doctor is compassionate and gentle about the delivery of the news that will forever change your life and the lives of your loved ones. I wrote “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” after caring for my husband for 10 years, in order to help other caregivers feel more confident, happier, healthier, and deal with feelings of guilt and grief.

For hundreds of other caregiving tips, find “Calmer Waters: The Caregiver’s Journey Through Alzheimer’s and Dementia” on AmazonBarnes and Noble, at other fine book stores, and many libraries.

 

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What can and should you do after getting a diagnosis?

It is understandable that you will have many conflicting feelings such as disbelief, anger, depression, sadness, fear, grief, and shock. You may even feel relieved that you finally know why you are not feeling like yourself. It can be helpful to talk about what you’re feeling and thinking rather than to keep things bottled up inside. In addition to talking with people who are close to you, you can contact the Alzheimer’s Association® at 1.800.272.3900.

You don’t have to tell everyone about your diagnosis if you don’t want to. But if you are still working, or if your boss has questioned your work habits, etc., it’s a good idea to inform him or her of your diagnosis, especially since you might be eligible for  Social Security Disability Insurance.

Your health is more important than ever

Just because you receive a diagnosis doesn’t mean you should give up trying to live a healthy life. You probably still have a lot of years ahead of you, so enjoy them as much as you can. Continue to get daily physical exercise such as walking, biking, hiking, dancing, swimming. Eat a Mediterranean based diet that includes lots of fresh veggies, fruits, nuts,  fish, whole grains, avocado and olive oil.

Stay socially connected as much as possible. It’s normal to feel depressed and it’s okay if you don’t feel like “going out” as much as you used to. But it’s important not to isolate yourself. Keep golfing, bowling, playing cards, as much as you can. Continue to meet with friends for lunch or a movie. If you feel the need to talk, make an appointment with a therapist who specializes in helping people with dementia.

Visit museums, spend time with grandchildren, get a pet (if you don’t already have one), attend an Alzheimer’s Association Memory Cafe. The Alzheimer’s Association’s Memory Cafés offer a fun and relaxed way for people living with early-stage memory loss to get connected with one another through social events that promote interaction and companionship. This is a place where the care partner can receive information while connecting and sharing with other people in similar situations.  Keep busy!

 Legal and Financial Planning for the Future

This is the time to start planning for the future. Taking the time to make decisions about matters that will affect your health care and your finances before you are unable to manage them is one of the most important steps you can take for yourself and your family.

There are many legal and financial documents that will help you formalize your plans and wishes such as:

Durable Power of Attorney

In this document you appoint a person you trust to make legal and financial decisions on your behalf, if you become unable to do so for yourself.

Health Care Proxy

In this document you appoint a person to make medical decisions on your behalf, if you become unable to do so for yourself. It’s important that you speak with the person you appoint about the kind of medical care you would or wouldn’t like so that they can carry out your wishes.

Living Will

Some people also want to make a Living Will in addition to having a Health Care Proxy. In this document, you can state your wishes about end-of-life care.

Last Will & Testament

The purpose of this document is to designate how your assets will be distributed after your death. This will must be completed with the assistance of an attorney.

All the best to you and your families. 

With love,

Barbra Cohn

 

 

 

 

 

2 thoughts on “You have a dementia diagnosis, now what?

  1. Nice newsletter, Barbara, thanks! Happy belated birthday! I hope you had a good day and life is good! Love, Susie

    On Mon, Jun 11, 2018 at 5:59 PM thehealthycaregiverblog wrote:

    > healthycaregiver posted: “June is Alzheimer’s & Brain Awareness Month. > It’s a good time to have a physical exam, especially if you are worried > about your memory not being as sharp as it used to be or if you’re having > trouble coping with daily life. If you’ve noticed that someo” >

    Like

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