Talking With Justice Sandra Day O'Connor: Battling Alzheimer's

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November is National Alzheimer's Disease Awareness Month -- and this week (November 11) marks one year since Alzheimer's made a widow of former U.S. Supreme Court Justice Sandra Day O'Connor. She and her late husband, attorney John J. O'Connor, had lived with his diagnosis for almost two decades.

Seeing little progress against what she calls "this dreadful disease," Justice O'Connor is calling for the country to commit to developing a national strategy against Alzheimer's, with the goal of finding a breakthrough by 2020.

She stepped down from the high court in 2005 to help relocate her husband to a care facility. As his condition deteriorated, she and her family coped with many common Alzheimer's effects, including his failure to recognize them and his developing romantic attachments to fellow residents.

"I suspect that you will not hear from many of my fellow caregivers directly," Justice O'Connor testified before Congress in 2008, her first public remarks about her story, "simply because they do not have the resources to take time away from their loved ones in order to come before you."

SEE ALSO: Find Memory Care Near You

In an interview with Caring.com, Justice O'Connor talks about what the country needs to eradicate Alzheimer's -- and how individual caregivers can cope.

What's the one thing you'd like to see the new Congress do to help put the country on a clear path toward a cure?

So little national focus has been given to Alzheimer's, other than by private groups. We need to see the same effort on a national basis to take action concerning Alzheimer's that has happened in the past with other diseases, like AIDS and polio. We need to take stock of all federally financed resources available. Or perhaps designate a coordinator -- when this nation decided to take on AIDS, we got a leader or two to head the effort.

The biggest impediment has been getting the votes. They haven't been there so far. Why that is, I'm not sure, given that Alzheimer's is so prevalent.

You've said before Congress that many caregivers lack the resources to take time away from loved ones to lobby for a national Alzheimer's strategy or cure. What do you suggest an individual caregiver do to help bring about change?

SEE ALSO: Find Memory Care Near You

There's still a lot they can do. They can send letters to individual members of Congress who are considering legislation about Alzheimer's policy. Stamps aren't that expensive! They can also become a member of any group advocating change for Alzheimer's, and be counted that way. Caregivers can still be a voice.

How did you and your family respond when you first learned your husband had Alzheimer's -- and at what point did you begin to think of yourself as a caregiver?

I think my three children and I realized the seriousness and the difficulty of the disease immediately. I don't think we had any misconceptions. We knew how dreadful it is.

I thought of myself as a caregiver from the outset. My husband and I were very close. If one needed help, the other was always there. So my caring for him happened on autopilot. That was the deal we made when we married, that we would care for each other.

Was there some aspect of your caregiving experience that worked especially well, that other caregivers might learn from?

SEE ALSO: Find Memory Care Near You

One great thing was that I asked my three children to select a care place for their father when his condition went beyond my ability to care for him at home. It's something almost everyone has to do eventually because this is such a degenerative disease.

They did a wonderful job, and I was glad. If I had selected a place myself, they may have felt I could have done better. By talking together and collaborating, we avoided internal misunderstandings and disappointments. That was great.

More thoughts on Alzheimer's from Justice Sandra Day O'Connor

You've had some significant challenges in your life. Where does caring for a husband with Alzheimer's rank with things like being accepted as a woman attorney or serving as the first female member of the Supreme Court?

It's all hard. Probably the hardest part with the Alzheimer's was early on, when John couldn't drive any more. We Americans are wedded to cars. They're our independence. I recall so poignantly the day I had to have my husband be told he couldn't drive any more. I had the doctor do it, instead of me. John was in his 70s.

And did he listen to the doctor, or put up a protest? That can be so hard for families.

SEE ALSO: Find Memory Care Near You

He did "hear it" from the doctor. His own father was a doctor, so I guess he was inclined to respect that opinion.

Given that you're now 80, and by age 85 people have a one in two chance of developing Alzheimer's, how much discussion have you had with your children about your potential future care?

Not much about me, because we've just been through that and all know what has to be done. But we did talk a lot about my husband's care.

It's hard for families. You don't want to acknowledge that your spouse or your parent or your child is incapable of managing anything anymore [because of Alzheimer's]. But the problem is, you have to. You have to go through the issues of having someone authorized to have legal action, to file tax returns, and apply for Social Security benefits, for example. Someone has to take those things on.

What was the most challenging emotion you had to deal with as a caregiver?

Seeing someone you love and care for falling to a totally disabling and fatal disease -- such sadness.

So many families dealing with Alzheimer's can relate to that. Is there one hopeful thing you see happening now?

What's hopeful is that there are many people and many groups focusing on this problem -- and that, finally, more of them are recognizing that we need to get together as a nation on this.


about 4 years ago, said...

O'Connor, of all people, should understand that the root is money. There is, as with cancer, more money in the "treatment" than in any cure.


over 4 years ago, said...

I particularly liked the suggestion of having her children select a care facility. It's important that they be as involved in the on-going situation as possible. I also liked her encouraging participation in telling congresspersons to work hard on Alzheimer's health legislation. They are busy people, but need prodding on this very important issue. Sandra Day O'Conner is a role model for us all.


almost 5 years ago, said...

I wish her well. Her opponent is menacing and seemingly indestructible. Cure by 2020? A rather arbitrary date. We have had a war on drugs, a war on cancer and other political social economic wars. It appears to me that the only one we support with people money and materiel is War! We mobilize quickly and often for that one. I have no magic wand or solution other than to point out that we clearly need new pathways and surely leadership.


almost 5 years ago, said...

I found this article to be touching and my heart does go out to the family, BUT, this particular family had the means and the money to give their loved one the best care possible. What do families like myself do when this horrible disease strikes. My mother was diagnosed and she lived with me for the last five years of her beautiful life. I was able to take her to a daycare center at the establishment where I am employed. When the daycare changed hands and it was not possible for me to take her I had no choice but to leave her at home as I was working full time and there was no possible way I could have stopped working. Fortunately my husband was able to stay home with her most of the day and made sure that she ate and stayed comfortable. In the last month of her life Hospice came three to four times a week. She passed away a year and a half ago and I am still battling with the guilt that she was left alone far too much but I did not have the funds to do anything else for her. My mother was 91 when she crossed over and I miss her EVERY day of my life but I feel that I let her down. The government of this country does not care for the elderly unless you have tons of money to compensate for ones care. I find this true with mental health issues as well. My biggest fear is that disease becomes mine and my children will be burdened with my care. I am 66 and still have a full time job but like so many of the American people my savings and retirement dwindles every month in order to keep food on the table and the bills paid. I might add that my husband and I have never lived beyond our means. This is a terrible disease! Can someone out there give me a little insight as to what people in my peer group are to do!


over 5 years ago, said...

Yes, I can relate to what Alzheimer's did to my mother. We knew something when she was having difficulty with an employer doctor referral. The employer did not share anything with our family; so we weren't sure why she was being forced to retire in her early 60's. Mom begin to complain of not getting sleep; even when it appeared that she was. The physician referred her to psychiatry. She had numerous medicines for sleep and neverousness which had side effects: seizures, blood clots, depression. It was very complicated to help Mom when she could not communicate. The diagnosis was difficult without her participation; and our confusion. Now I see many of her cries for help that I did not understand.


over 5 years ago, said...

My father died in August, 2004 from complications of Alzheimer's Disease. It takes such a toll on the family and caregivers. He was lucky, he only had the disease for about a year.........I hope that one day a cure or at least some medication can be found to help those affected by this disease.


over 5 years ago, said...

let's talk less about how people with money and connections and families who stand to inherit fortunes become involved with caregiving, and talk a lot more about those with a lot less financially and supportively.


over 5 years ago, said...

Alzhiemers is a debilitating condition that effects many over 70 years of age. I have found if the elderly remain actively progressive in thinking and processing they are less prone to develope Alzheimers. My mother is 81 and stays active in her sons and daughters lives as the Matriarch of our family. She does not suffer from that disease. She reads well and is less sedentary than many that have Alzheimers. If the treatment and stimulus for treatment are applied early in the inception of that condition, the chances of rescinding from it are better.


over 5 years ago, said...

I am a Physician-Consult for a large public hospital. The cases of Alzheimers are many and the treatments few. With the baby boom generation approaching the age of retirement and the elderly growing older, the cases of Alzhiemers will grow to a higher level of the population. Geriatrics and Neurology are going to have to keep up. More treatments and more therapy are called for. Stay active elderly, and hold to the process of medical assistance at the onset of that debilitating disease. I hold hope that curative treatments will be found.


almost 6 years ago, said...

I have little respect for the Supreme Court judges, as, like it or not, they are appointed on a political basis, or bias. Judge O'Connor to me, was different, she managed to vote according to law and conscience. For her, I have enormous respect, and this article, beautifully written, serves as a warning to all society, we are aging, and more must be done to combat this disease.


almost 6 years ago, said...

would be the most....sorry...typo.


almost 6 years ago, said...

When are we going to admit that some people simply live too long? It's fine when you are healthy and independent but absolute torture if you are ill. That is awful for the patients and awful for the families, not to mention the economic drain on society. We need euthanasia the worst way. It is kind and we do the world a favor.


almost 6 years ago, said...

I have a suggestion. Euthanasia in lovely surroundings and background music. It would the the most kind and unselfish may to go. Who wants to live with that disease? no one.


almost 6 years ago, said...

In a Newsweek report the cost to care for elderly patients with Alzheimer's is over $600 billion a year and expected to rise to 1.5 trillion by 2020. That equates to nearly 3% of the global GDP. What incentive is there for pharmaceutical companies and hospice caregivers to end this disease? It would be like energy companies providing solar and wind units to individual households.


almost 6 years ago, said...

I have the utmost respect for former SC Justice Sandra Day O'Connor for her historic accomplishment of becoming the first woman appointed to the SC. She was a role model for women in my generation. As the daughter of an Alzhiemer's victim, I applaud her advocacy for the millions of Alzheimer's victims who are unable to speak for themselves.


almost 6 years ago, said...

The need for more resources to be committed to research .


almost 6 years ago, said...

RE: Anonymous' comment re: NIH's study of 8.4% incidents of Alz. in age- 85+ populations may have been the case in 1995 when the study was published and years earlier while the research was being conducted. Consider since 1996 when 4 mil people were estimated to have Alz in America and 18 million worldwide. Today, the numbers have increased 25% to over 5 million in the US and 26+ million (or even higher--I've seen as much as 56 million) worldwide. Until a newer study can be cited we need to aware. And this will be difficult as the researchers are now looking differently at the relationship between Alzheimer's and dementia. Instead of dementia being the umbrella term and Alz. being a leading cause...well, stay tuned.