Older Americans Month, May 2009

I finished the pilot study for my thesis on Gratitude and Resourcefulness Among Successfully Aging Older Adults last Monday and began a summer internship at Family Caregiver Alliance the next day. I can tell I'm catching my breath when I find myself looking forward to writing a post and thinking that there are so many things to write about.

This feeling arrived not a moment too soon as I would have been mad at myself for not posting anything in May which President Obama has Proclaimed to be Older American's Month. He begins by saying that "older Americans have carried our Nation through great challenges and triumphs" and acknowledges that this population  has much to offer in terms of wisdom and skills. 

Hopefully, proclamations such as this will help us all reframe our ideas about who older adults are. Previously, I made many "career" decisions based on what was practical for the time and fortunately did many things that I was passionate about. But I never quite ended up on a career where my outside matched what I felt inside. Like many baby boomer adults, I was still looking for a career that represented my authentic self and decided to reinvent myself at the age of 50. 

In the past, aging was only associated with decline. I now feel blessed to have the possibility to live longer and give it another shot, potentially "getting it right this time" and helping others along the way. Happy Older American's Month.

A different view of Alzheimer's

I'm singing the grad school blues these days: so much due, so little time.  So I've been slow getting this post out. 

I'm sensitive to the fact that watching and caring for someone with Alzheimer's can be exhausting and heartbreaking. Alzheimer's is a progressive and fatal disease and the most common kind of dementia. It affects people in many different ways and to different degrees. In the case of a friend's grandmother, Alzheimer's took an interesting twist. 

The grandmother, Bernice, was dutiful and anxious. Nothing was more important than her family. Her own mother died of double pneumonia before treatment with antibiotics became common practice. Bernice was around eight or nine at the time. Her father remarried. Her step-mother did not like her; she felt abandoned. She lived through the hardships of the depression. She was very smart but like many women of her generation, she followed a traditional script. She was the proverbial good woman behind a successful man. She pushed her husband and son. Beneath it all she was angry. Some would say she was wound very tightly.

As the disease progressed, things changed for Bernice. I'd known her for 13 years and don't remember her ever cracking a joke. Now she would see her husband and say with an uncharacteristically big smile "that's my honey pie". As she lost her memory, the weight of her early losses faded; she forgot to be hypervigilant. The anger at always having to drive another person was gone. She didn't have to take care of everybody. She was free as a bird. In forgetting, she was finally happy.

In his article called "Modern Love", Robert Leleux describes the disease as seeming to liberate his grandmother.  "Imagine: to be freed from your memory, to have every awful thing that ever happened to you wiped away -- and not just your past, but your worries about the future, too. Because with no sense of time or memory, past and future cease to exist, along with all sense of loss and regret. Not to mention grudges and hurt feelings, arguments and embarrassments."

I'm left wondering why it can take a fatal dementia for some of us to empty our life's pockets of the lead weights of past grudges, resentments,  and hurt feelings.

 

Thank you but no thank you: Managing information and advice during a critical illness

I've discussed my experience, of what it was like to live with the uncertainty caused by a diagnosis, with friends who’ve experienced a critical illness. Our stories were similar. We felt incredibly blessed by friends and even by people we didn’t know so well. We received calls, visits, and letters. Well-being ceremonies and prayers were performed on our behalf. We also found that a desire to do something useful was very prevalent among people we knew. For most anyone, hearing the news of a diagnosis brings up fears and reactions towards the idea of a serious illness. Giving us support by sharing medical information or stories about what happened to their friend’s sister, who had “nearly” the same thing, often made them feel less helpless.

By the time I received my diagnosis, I was feeling ill and digesting a lot of information was difficult for me. I found that I needed to shelter myself from receiving too much unqualified medical information. On the one hand, I did not want my own fears to prevent me from seeking quality information or from finding the best medical care. On the other hand, the information I found about Meningioma on the internet was distressing. Jonathan Alter shared this sentiment in his Newsweek article “My Life with Cancer”. He said that “a little knowledge can be a dangerous and depressing thing. The Internet is a fantastic resource for patients, who increasingly use it to ask pertinent questions of their doctors. [but] It can also baffle and disorient”. Some people handle the ordeal of a disease diagnosis by consulting with lots of people and sifting through lots of information. I might have used that strategy to cope with my diagnosis if it had not been for the help I received from two doctors I know personally, who deal with oncology issues. (Blessings to Gail and John). They told me that the tumor I had was “the good kind”. So, rather than searching far and wide for a specialist, as one might do with a rare form of cancer, they advised me to focus my efforts on finding a surgeon who had done the specific type of surgery I needed hundreds of times.

At this point, I began to limit my own internet research to the gold standard medical websites: the Mayo Clinic, the National Institutes of Health (NIH) and WebMD. Since that time I have been told that patients and family members can call or email the Stanford Health Library  or the health information services at CPMC  where you can ask a librarian to do the research for you. This is especially wonderful if you are feeling too ill or too overwhelmed to do this for yourself.

When I felt that I had enough information to make informed medical decisions for myself, it became easier to deal with unsolicited advice. I discovered that the reason people gave unsolicited advice was either because they were trying to help me or help themselves feel less helpless. I learned that it was not my duty to listen to someone’s advice, regardless of whether the motivation was altruistic or fear based. Once I understood that, I was able to thank people for their caring before they launched into unsolicited advice giving. I often reassured them that I was under the best care possible. Controlling the medical information coming my way helped me keep my level of distress at a minimum. Sometimes, stopping a conversation before advice giving began, made room for other, more valuable, kinds of caring and support to take place. What I needed most wasn’t information; I needed to speak truthfully from the heart.

(Next: A different view of Alzheimer's)

Meningioma: meningo-what-now?

I realize that I’d talked about Meningioma previously, but had not mentioned what happened and what a Meningioma is. Here’s that story.

In early August, I was sitting at my computer at home when my left ankle went limp. As near as I could tell, my symptoms fit the description of someone having a stroke. I’d studied age related diseases so I was familiar with the simple “Act F.A.S.T.” test to do if you think someone is having a stroke. So I compared movement on both sides; I lifted my right leg and rotated my foot at the ankle and wiggled my toes. Then I tried to do the same with the left foot. I could barely raise my left leg and I could not “think” my foot or toes into moving. That was when I knew I was in trouble. With a stroke, brain cells are dying and the faster you can get help the better the chance you have of a good recovery. So I rolled my office chair to the phone and called 911. The paramedics arrived before I’d gotten off the phone. By the time they arrived I was already getting some movement back. I began to think I’d made a big deal out of nothing. Thank goodness the paramedics convinced me that it was better to go to the ER and see if I could find out what it was.

After questions, blood tests, neurological exams, two CT scans, and an MRI, it was determined that I had a Meningioma brain tumor, which is usually a benign, very slow-growing tumor of the brain or spine. They are quite common; 4% of cadavers have them, and those people never knew it. I have since learned that they usually are detected in people between the ages of 40- 60 and are found more often in women than in men.

Because meningiomas grow slowly, they may not produce symptoms for years, which was true in my case. The neurologist believed it had probably been forming for the last 10-20 years. My meningioma was pressing against my right side motor-control center, which is why I was exhibiting symptoms on my left side. My husband and I recalled a few past, very similar episodes of weakness in the left leg, but we’d always come up with more prosaic explanations for them (leg falling asleep, my being klutzy and my getting older).

Because of the slow growth of meningiomas, one treatment may be to monitor it. Whether or not to monitor the growth depends on the location and size (usually under 2 centimeters). Mine measured 4.3 centimeters. It was large enough to warrant surgical removal- the treatment most often used to treat meningiomas.

As someone who watches TV and loves the cinema, it was difficult to connect the MRI images I was being shown to myself. It was like watching an episode of Grey's Anatomy -- only I was the patient and McDreamy forgot to show up to deliver the news. Although everyone who dealt with me at the CPMC Emergency Rooom was fantastic: concerned about my comfort, safety and privacy, I simply could not take it all in. I don't think the news would have sunk in at all if it had not been for the manner in which the CPMC doctors delivered my diagnosis: straightforward, honest, compassionate, and in a gentle tone of voice. People thought I was pretty calm when I heard the news. I was calm; I suppose I was in shock. I was trying to accept and absorb the news.

(Next: Thank you but no thank you)

Gerontechnology: Eldercare-at-home startup seeks beta testers

My previous post about gerontechnology was sparked by an email forwarded to me by my husband. A colleague of his had been faced with long-distance care for her mother. Because of that experience she volunteered to participate in a small focus group by two young women just out of the graduate program in public health from Berkeley. She was impressed with their "passion and focus around caretaking strategies for elders". They are developing a business plan around ways to keep seniors in their homes and are now seeking some Bay Area contacts to road-test their services.

Should you have clients, friends or relatives you're caring for in the greater Bay Area who might benefit from this type of service, please contact Maham or Heather directly. Their contact information follows along with some information about their concept:

"We are a start-up (two Master's in Public Health grads from Berkeley) that has begun providing Aging in Place Assessments for Bay Area families. Essentially, we will do an in-home visit at your family member's home where we systematically evaluate opportunities to:

• make it safer
• (ex. install grab bars, handrails, better lighting, etc.)
  
• do maintenance that will prevent bigger problems down the road
• (ex. replace smoke detector batteries, fix leaky sinks, etc)
• set up technology to keep them connected to their family
  
• (ex. digital picture frames, phones with amplification, etc)

We are doing the initial consultation for free because we are still in pilot mode. We are experts in the best products for keeping people comfortable and independent in their homes.

Again, this is a totally free service, and your family will get a customized strategy with specific recommendations for your unique home, situation, and health status. It can serve as a useful roadmap for planning to help your loved one stay in their home with a high quality of life.

Drop me an email if you are interested.

Thanks,
Maham

--
Maham Daher
Masters in Public Health & MBA
University of California, Berkeley
Haas School of Business

Cell: 617-319-6290
maham_daher@haas.berkeley.edu

(Next: Meningioma: The brain and other grey matters)

The emerging uses of gerontechnology

It’s apparent that there will not be enough professional caregivers to deliver services as we’re doing it today. Nor can increasingly strained family members meet the impending demand. Gerontechnology, “the study of aging and technology for the benefit of improved living and working environments for the elderly and their caregivers,” has great potential to improve the care the elderly can get with fewer caregivers.

A New York Times article, “Sensors Help Keep the Elderly Safe, and at Home” suggests that the use of technology can support aging in place (staying in ones home). The article describes a system (eNeighbor) that helps an older person live alone independently and provides protection if they have a health incident. The system consists of twelve different devices, including:

• a personal emergency call button that a person can push to get assistance,

• a camera,

• a telehealth device that can check on symptoms and measure vital signs in the home,

• sensors which identifies changes like if a refrigerator has been opened or closed, if medication has been taken, or if they have they gotten out of bed.

Other Gerontechnology examples:

• Dissertation on the use of telehealth devices to support under-served medical regions.

• Link2Care - an internet site offering information on every facet of caregiving for dementia, care planning, decision-making, and consultation - free.

Other Gerontechnology resources:

• Center for Aging Services Technologies (CAST)

I’m not suggesting that technology is a substitute for social support. The benefits of having close, personal relationships is well documented. But if technology in someone’s home can improve their health outcomes and provide a safer environment (at a lower cost than assisted living), I'm all for trying it. And giving caregivers a tool that lightens their burden is an added bonus.

(Next: Berkeley grads seeking some Bay Area contacts to road-test their ideas for keeping seniors in their homes.)

Meningioma: Skillful means - getting support during critical illness

I just left the hospital after a visit with a dear friend. She has metastatic colorectal cancer and just had her liver resected (surgical removal of a part of the liver). What struck me most, about our visit, was her amazing spirit and her comment about how much she appreciated the support she’d received from friends and family.

Once more, I was reminded that the people in our lives can be a deep source of healing. Even though I know (on an intellectual level) that studies about the relationship between physical health and physical recovery show that emotional support is associated with better physical and psychological recovery outcomes and that emotional support reduces stress associated with the recovery from illness, there is nothing like being critically ill to bring the point home.

In my previous post in this series, I said that I learned how to interact with others, tell them about my illness and ask for support by watching a friend skillfully do these things for herself just a few weeks before my own diagnosis. Cynthia and I belong to a women’s sangha (a Buddhist group that supports each other). At a meeting in late July, she shared the news that masses were discovered on her ovaries two weeks prior and surgery was imminent. Hearing the news that someone I care about has just been diagnosed with a critical illness was devastating and frightening. What will I say that is adequate? What if I say the wrong thing? I’ve experienced times when I was so afraid of saying the wrong thing that I said nothing at all or tried to “act normal”. So my friend’s consideration of these things, from the beginning, was a great kindness. By gently and skillfully expressing her wishes for how she’d like to be supported during the days that would follow, she got the kind of support she needed and inadvertently taught me what to do when it was my turn to be faced with a critical illness.

First, Cynthia asked that we not share stories or medical information about ovarian cancer, good or bad. As a health care educator, she was very aware of the information that was out there. She said that for the moment she was fine. This did not mean she had not had “wobbly legs” from time to time, while she had been deciding what treatment path to take. She wanted us to support her with “just this”- i.e. not adding any of our own layers of reactions to this news on top of those she already carried… to let her have her own experience, to not try to fix it or take it away- just being present and being ourselves was enough. She let us know that she would not be informing members of her immediate family. Their proneness to excessive worry was too much for her. She wanted to wait until after the surgery when she knew what she was dealing with. She asked one of us to be with her at the hospital and to be the contact person through whom we could all get information about her status, need for visitors and so forth. This supported her but it also supported and connected her friends.

From my experience I know that a potential cancer diagnosis brings with it an incredible sense of powerlessness. Being able to determine some things for oneself, such as the type of support one wishes to have, is very empowering. Having asked for support we can take the next step into the unknown feeling a little less alone.

(Next: News Flash)

Put in your teeth

I know I promised you the “thank you but no thank you” post next but I was catching up on my newspaper reading and came across one of Leah Garchik’s columns featuring her annual Valentine’s “quote-by-quote tramp through the pastures of relationships”:

-- "If you're going to go out on a date, you really have to put in your teeth." (Woman's advice on dating among senior citizens, overheard at a women's gathering by Vivian Richardson)

-- "I will do hospitals, but I don't do funerals." (Two older gents discussing senior dating, overheard in the Berkeley YMCA hot tub by Jerry Fillingim)”

So for today, one of our most over-commercialized “holidays”, dreaded by couples and singles alike, I say laugh, eat chocolate, and by all means put your teeth in.

Meningioma: the care manager gets lessons on dealing with her own critical illness

I’m beginning this blog on the six-month anniversary of the removal of my meningioma brain tumor. As a Geriatric Care Manager in training, I see this blog as a place for commentary and sharing information about Gerontology. It is not my intention to have it be a saga about my one wild and precious life. But for now that is where I’ll begin. It is my hope that by grappling with my own medical condition, rather than swiftly sweeping it under the rug, I will have become better qualified to help others come to terms with their own illnesses.

When I was diagnosed with a brain tumor, I did not think to ask God for any special favors. I did not feel I’d done anything exceptional in my life to deserve special treatment and felt that my years of practicing Buddhism might have pushed me out of the arena of God's good graces. So there it begins. Who do we call upon when the illness that strikes is our own?

As a spiritual person I know that each of us has to reach into our deepest selves to answer this question. As a future care manger, I know that connecting people with their spiritual beliefs and community can be a tremendous source of comfort and support. I intend to address the role of spirituality in illness in more depth in the future. For the moment I will leave you on your own to ponder the issue of spirituality as it pertains to you and discuss some practical matters.

In answer to "who do we call upon", I’d like to say that most of us look to our friends and family. The definition of "family" that I like is part of the core concept of patient and family-centered care. “The word 'family' refers to two or more persons who are related in any way—biologically, legally, or emotionally. Patients and families define their families.” (Blaylock, 2001) From my own experience and those I work with, I know that having the presence and support of family makes a huge difference in the experience and outcome of surgery. Like many of you, I live in a city, far from the members of my natal family. For me, my family includes my husband, my mother-in-law, a few dear friends, and my cat, Wanfu, who doesn’t like to see me suffer.

At this point, I would like to tell you that my professional training taught me exactly what to do if I ever became ill. But I soon discovered that my training did not make me exempt from feeling shocked, afraid, and sad. I was as lost as anyone who had just received a medical diagnosis and faced extensive surgery and an uncertain future. In my case, I learned what to do by seeing my friend, Cynthia, prepare herself for surgery only a few weeks before mine. Like me, she discovered a tumor on a weekend with little or no advanced warning in terms of symptoms. It was sudden, and required some fairly rapid decisions to be made.

(Next: thank you but no thank you)