Five Things my Mother (and Daughter) Taught Me about Caring for People with Dementia

My mother developed Alzheimer’s disease, the most common type of dementia, in her early 60s. Later on, she was diagnosed with an aggressive thyroid cancer that required a surgical opening in her throat called a tracheostomy so that she would not suffocate from the tumor. My father and siblings were naturally distraught and overwhelmed.

I was 38 years old at the time and a suddenly single mother with 3 young children. My youngest daughter Joy was 2 years old and in diapers. My family looked to me for help.

As a nurse, I thought I knew the challenges of caring for someone with Alzheimer’s as well as someone with cancer and I was glad to use that knowledge to care for my mother. But, especially at first, it wasn’t easy.

Mom would ask the same questions over and over, have episodes of hostility and paranoia and periodic insomnia. She also became adept at thwarting the safety measures we used to protect her.

Then, one day near the end of my mother’s life, I sat on a sofa holding hands with both Joy, now over 3 years old, and my mom watching Sesame Street on TV. I was struck by the fact that both of them had the exact same expression of happiness on their faces. It was then that I realized how far we all had come and how much I had learned.

FIVE THINGS MY MOTHER AND MY DAUGHTER TAUGHT ME ABOUT:

1. Getting things done

I soon realized that both my 2 year old daughter and my mother responded best to one direction at a time and the patience to wait until one action was completed before directing another action.

For example, instead of just saying “brush your teeth” and trying to hurry the action along, directing both of them on just one step at a time time ultimately saved both time and frustration on everyone’s part.

I also found that set routines were comforting to both my mother and daughter despite their obvious differences.

2. Answering questions

Like most people caring for a relative with dementia, I found that answering the same question from my mother over and over again was exhausting. Answering different but incessant questions from my daughter was also difficult at times. So I learned the technique of distraction. For example with my mother, I would interest her in another activity such as folding laundry with me. With my daughter, I would often ask her to “read” a book to me. Judiciously used, this kind of pivot would relieve the increasing tension and make both of them happy.

3. Attitude

I made sure to smile often and establish eye contact with both my mother and my daughter. I would work my name into the conversation when I could see my mom trying to remember who I was and I made sure to often say “I love you” and praise the efforts of both my mother and my daughter. I made sure each had my full attention at that time even when I was in a hurry myself.

4. De-escalation

I found that both people with Alzheimer’s and 2 year olds are prone to sudden meltdowns that are difficult to handle. I discovered that watching for increasing agitation, frustration or the need for a nap and taking preemptive measures could often calm the situation before tempers flared out of control.

5. Music

I always found it fascinating that people with late-stage Alzheimer’s, even those who were rarely verbal, would often start singing when they heard a song they knew. The same is true with young children who naturally delight in songs. Our sing-a-longs were great fun for both my mother and my daughter. “You Are My Sunshine” was a special favorite. My daughter Joy is now an adult and a music teacher.

Best of all, my children still have fond memories of their grandmother after almost 30 years.

A FINAL STORY

This year, some married friends of ours buried the wife’s beloved mother who had Alzheimer’s. They and the rest of the family had worked together to take wonderful care of the mother at home as long as possible and in the nursing home where she finally died.

As the mother’s Alzheimer’s progressed to a later stage, she started to have vivid hallucinations.

One day, the couple made plans to take the mother to her favorite restaurant but she refused to go without the “two little girls over there.” The wife started to tell her mother that she was having hallucinations but her husband gently stopped her. Instead, he told the mother that the little girls weren’t hungry. The mother smiled and immediately got up to go to the restaurant.

The wife later asked me if it was OK to “lie” to her mother. I told her that her mom would probably have been embarrassed and upset to hear that she was having a hallucination. She might have even argued about it.

On the other hand, her husband’s response was both kind and respectful of her mother’s dignity. And, technically, those “two little girls” could not be hungry because they were not real.

To me, that kind of loving attitude from both these friends is inspirational. I wish that it was universal.

Arguing Life, Death and Assisted Suicide

In the article “Sides discuss NY proposal for aid in dying”, the exchange between Diane Coleman, a founder of Not Dead Yet, the foremost disability organization fighting physician-assisted suicide, and  Dr Timothy Quill, who fought for the constitutionality of physician-assisted suicide in the landmark 1997 US Supreme Court Vacco v Quill decision, is very enlightening.

Diane Coleman of Not Dead Yet spoke simply and eloquently:

“I don’t think I speak for all (opponents), but the disability community’s core message is that if assisted suicide is legal, some people’s lives will be lost due to mistakes, coercion and abuse, and that’s an outcome that can never be undone.

There is inherent discrimination in assisted-suicide laws. Most suicidal people receive suicide prevention. Assisted suicide laws would carve out an exception to that, and that exception would apply to people who are elderly, ill, disabled, and those are devalued groups in society. … Assisted-suicide laws would say, ‘these certain people, we not only agree with their suicide but give them the means to carry it out.’ We’re saying it comes down to social justice. Equal rights means equal suicide prevention.”

And

“It’s really not about physical pain. If you look at Oregon reports, about reasons people want to commit suicide, the reasons are things like feeling like the person has lost their autonomy, they’ve lost their dignity, they can’t do the things they used to do. They feel like a burden on their families. Those are psychosocial reasons that relate to the disability that people have when they have an advanced stage or chronic condition.”

On the other hand, Dr. Quill portrayed assisted suicide as little more than a benign discussion:

“Whether or not this practice is legalized, seriously ill patients are asking us to talk about it, they’re asking us to consider it” said Quill, founding director of the palliative care program at URMC and a board-certified palliative care consultant. (Emphasis added)

But to the question “Why do people with a terminal illness want to end their lives?”, Dr. Quill telling states:

“Some of it has to do with severe symptoms. I would say that’s not the majority. The majority is people who are tired of dying. It’s going on way too long for them. The kind of debility and weakness that accompany it, particularly for people that are used to being in charge of their lives, is very, very, very hard. Some of those people want to talk about what options they have to accelerate the process.” (Emphasis added)

This is very different from the way physician-assisted suicide has been sold to the public as a necessary last resort for terminally ill people in “unbearable pain”. However, as a 2014 article  “Dignity, Death, and Dilemmas: A Study of Washington Hospices and Physician-Assisted Death” admits, pain is not even a requirement for receiving physician-assisted suicide  in Oregon and Washington state:

The authorizing legal statutes in both states make no reference to the experience of severe pain or intolerable suffering as an indication for a patient to make a request for physician-assisted death but rely entirely on the entitlement due a patient in respect of their personal dignity. A patient rights framework provides the primary moral structure… (Emphasis added)

Thus, physician-assisted suicide is really about power and control over death, not the  suffering of the individual. And it is this power and control that has led European countries like the Netherlands to expand physician-assisted suicide even to non-terminally ill people who cannot or have not made the death decision themselves such as babies with deformities and people with dementia, mental illness or other impairments.

Closer to the US, the Canadian Supreme Court  has legalized physician-assisted suicide but still  without formalized rules, even on conscience rights.  In the province of Quebec, legal injection euthanasia kits  can be distributed to any doctor who wants them.

The Assisted Suicide Agenda in the US

It is alarming that the influential American Academy of Hospice and Palliative Medicine that had this same Dr. Timothy Quill in the article as a recent past president and honoree of their Visionary award. But it should not be surprising that the AAHPM has changed its former position of opposition to physician-assisted suicide to a position of “studied neutrality” towards what it now calls “physician-assisted death”.  Neutrality is progress to physician-assisted suicide activists like Dr. Quill and organizations like Compassion and Choices that need to neutralize medical opposition as much as possible while quietly setting up relentless campaigns to legalize assisted suicide in every state. If enough states give in, a new Supreme Court decision may even overturn the Vacco v Quill decision and legalize physician-assisted suicide throughout the US.

But in the meantime, trying to sell “neutrality” to doctors and convincing the media to change the term “physician-assisted suicide” to  “physician-assisted death” cannot mask the inevitable and lethal damage done not only to individuals but also to our medical and legal institutions that can no longer ensure ethical protection for our lives.

Mass Shootings and Mental Illness

The rash of recent mass shootings is alarming, especially the most recent mass shooting in San Bernardino following so quickly after the Colorado Planned Parenthood one. Now, people are not only talking about mental illness as in the Planned Parenthood shooting but also the existence of evil as in the apparent terrorist attack in San Bernardino.

Can mental illness and evil be totally separate issues? I confess I don’t know the answer to this.

But I do know that our mental health system needs vast improvement from my own personal experiences.

My first husband and the father of my children was a brilliant, caring psychiatrist whose articles were published in medical journals. When I left bedside nursing to start our family, we had a plan for me to eventually join his private practice to specifically support the families of his patients. We both believed that families were ideally the best support system for people with mental illness and we hoped that such a plan would lead to better outcomes and help keep families together. Communication was key.

However, while our children were still small, my husband started slowly succumbing to severe mental illness himself despite treatment. I was frantic to help but at that time in the 1980s and even without the current HIPPA privacy rules, I was unable to get much information about his condition or how to help him from his psychiatrist even when there were multiple hospitalizations.

As his condition deteriorated, I was told by his psychiatrist that there was nothing I could do or not do to help the situation and that he was handling the situation. Then he told me that I should consider divorce for the sake of our children.

Since I believe in the sanctity of the marriage vows, especially the part about “in sickness and in health”, I soldiered on and got second and even third opinions for my husband. Nothing helped very much and I was still shut out from comprehensive discussion of treatment plans.

My husband finally abandoned our family and I reluctantly had to file for divorce. However, I still wanted to help him.

My now ex-husband eventually went on total disability for mental illness but since mental institutions were closed decades before for “less restrictive” measures, he became homeless and eventually shuffled from one assisted living facility to another until his death in 2014.

When our oldest daughter started using drugs at 14, I ran into many of the same problems with the mental health community. Even though she was a minor, she had the right to  “confidential health services”. This came about because it is thought that minors will be more likely to seek help from a doctor if confidentiality-even from parents- is assured in matters like sex and drugs. Unfortunately, as in my case, that meant that I could be mostly kept in the dark when it came to helping my child. I could pay for rehab but I couldn’t get much information or direction about helping my daughter. I contacted mental health organizations and tried to research support groups on my own with mixed results. My daughter died by suicide using an assisted suicide technique in 2009 when she was 30 years old.

We now have “mental health parity” under Obamacare which was intended to make mental health care better by increasing coverage. However, a recent Washington Post op-ed titled “The problem with Obamacare’s mental-health ‘parity’ measure”  shows how difficult it can still be for family or friends to get help for someone with a mental illness.

Mass shootings get our attention about gun control and terrorism issues but the mental health care crisis goes on. We need to do a better job and I still believe that mental health care must try to include and help the whole family for better long-term outcomes.

TWO ARTICLES ABOUT ASSISTED SUICIDE MAY PREDICT ULTIMATE COURSE OF MEDICALIZED DEATH

A July 31, 2015 article in Medscape (a subscription website for medical professionals) titled “Assisted Suicide for Mental Illness Gaining Ground” admits that:

“Euthanasia (referred to as assisted suicide in the Netherlands and Luxembourg, where it is also legal in cases involving suffering due to medical and psychiatric illness) has been legal since 2002 in Belgium, and the law was extended in 2014 to include emancipated children with suffering due to terminal illness.

Through a required process, patients must show their illness to cause “unbearable or untreatable suffering”; however, the definition is acknowledged to be subjective, Dr Thienpont told Medscape Medical News.

“By its nature, the extent to which the suffering is unbearable must be determined from the perspective of the patient him- or herself and may depend on his or her physical and mental strength and personality,” said Dr Thienpont.

Despite the ongoing criticism that very few assisted suicide requests in the US are referred for psychological/psychiatric consultations, this article examines a July 27, 2015 British Medical Journal article ““Euthanasia requests, procedures and outcomes for 100 Belgian patients suffering from psychiatric disorders: a retrospective, descriptive study”   that tries to make the case that mental illness itself can be grounds for assisted suicide.

In the meantime, an Irish website thejournal.ie has an August 2, 2015 poll asking “Poll: Would you consider euthanasia while still healthy?” based on a story about a healthy nurse who  legally ended her life in a Swiss clinic:

“A HEALTHY NURSE from England has opted to die via assisted suicide, rather than growing old.
Gill Pharaoh (75), a former palliative care nurse, chose to die at a Swiss clinic so she wouldn’t become a burden on her family or the health service.

In an interview with the Sunday Times shortly before her death, Pharaoh said her children struggled to cope with her decision, but understand where she is coming from.

Her husband accompanied her to the clinic.”

Unfortunately, the countries in Europe that have legalized euthanasia/assisted suicide apparently are the “canaries in the mine” warning us of a relentless march towards the acceptance of euthanasia on demand in the US and potentially worldwide.