Collectively Wise

GRIEVING ‘AMBIGUOUS LOSS’

[by Joanne Reynolds] If you are a caregiver to a loved one who is suffering from dementia, you are experiencing something psychologists call ambiguous loss. It’s a particular form of grief that centers on the fact that you’ve lost the person you know and love as their personalities, memories and ability to function are overtaken by their dementia. It is a particularly painful form of loss because they are still living and you are with them constantly, but they are increasingly gone from you.

 

When someone we love dies, we grieve their departure. We miss them. Their deaths become a dividing line in our lives. We date our personal calendars by the events that happened before their deaths and the things that occur after. “Mom was still alive, so I think that it must have been in 1974,” I might say.

In ambiguous loss, there is no dividing line, no clean break, just the on-going, day-to-day disappearance of your loved one as their brains function less and less. They are here and gone at the same time.

We Are the Care System

[By Joanne Reynolds] Suzanne Mintz, co-founder and president of the NFCA says 80 percent of long-term care in this country is done by family and friends. She puts it pretty bluntly: “We are the care system.”

No one knows for sure how many family (otherwise known as unpaid) caregivers there are in the U. S., but the educated guesses from organizations such as AARP, the National Family Caregivers Association (NFCA) or the U. S. Administration on Aging, range from 36 million to 60 million.

The need for an enormous army of unpaid caregivers is going to dramatically in the coming years as the Baby Boomer generation ages. Some diseases, such as Alzheimer’s and Parkinson’s have risk factors that are dependant on age. The older the person, the more likely he or she is to suffer from one of these chronic and debilitating conditions that require care.

Getting Ready to Handle Disaster

[by Joanne Reynolds] The earthquake, tsunami and nuclear disaster unfolding in Japan have featured news coverage that must tug at the heartstrings of every caregiver—the elderly people in care facilities who are unable to leave because of the contamination and have run out of medications.

No one wants to see their loved one in a circumstance like that. As a caregiver, you need to be prepared for a disaster, whether your loved one is living independently, with you or in a care facility. The Red Cross has an excellent booklet on disaster planning for seniors (“Disaster Preparedness for Seniors by Seniors”) that was created in the wake of an enormous blizzard in upstate New York in 2003. I strongly recommend that you get and use this book, whether or not you’re caring for an elderly loved one. It’s full of good advice for all of us.

What to Do About Mom and Dad

[by Joanne Reynolds]

Recently, ABC World News with Diane Sawyer focused on caregiving issues as part of its on-going series “Families on the Brink.” Entitled “What to Do About Mom and Dad,” the segments looked briefly at a wide variety of issues facing caregivers of aging parents.

I’m sharing a summary of it here for those of you who may have missed it, and for those of you who are in other caregiving circumstances. Some of what was broadcast applies to all caregiving. If you’d like to see more, visit www.abcnews.com/wn .
The first segment featured a round table discussion between author Virginia Morris (How to Care for Aging Parents), geriatricians Dr. Marie Bernard and Dr. Neil Resnick, and Martha Stewart, the lifestyle maven who has founded the Martha Stewart Center for Living, a senior health care center within Mt. Sinai Medical Center in New York City.

They concluded that conversations with your parents about aging, care and end-of-life issues has to be started early, before there’s a crisis. Ask these types of questions and listen, carefully, to the answers:

• What are you concerned about?
• What are you afraid of?
• What do you hope for?

Normal Business Hours are not Traditional School Hours

[by Kirsten] Article first published as Normal Business Hours are not Traditional School Hours on Technorati.

As a working mom who is currently looking for work, I am reminded of the disconnect between the hours I readily have available to work, and the expectations of the business world.

I have three children. They are not old enough to care for themselves. In our area, the official after school program at the school, an afternoon sitter or an au pair all cost around the same, between $1500 and $2000 per month for a family like mine.

In addition to the daily schedule conflict, our public school calendar is completely unrelated to any normal business calendar. A typical company provides 10 federal holidays and 10 vacation days per year. In the Palo Alto Unified School District there are 28 non-instructional days in-between the first day of school and the last - NOT INCLUDING SUMMER or the two kick-her-when-she's-down days needed to round out the first and last instructional weeks. (Let's start on Tuesday and end on Thursday, ok?)

During the school year, a typical business worker will have 8 holidays and access to 10 vacation days, assuming that they do not take any summer vacation. In summary, that's 20 days of childcare that working families have to scramble to find each year, not including the summer! Is it safe to assume that working families will find safe, affordable and accessible summer care, and never go on a vacation? Is that how we want our system to function?

I understand that the public schools are not accountable for this discrepancy. But it is a real problem, and it places a real burden on working families. Where do you think coverage for these days come from in real life? From family members? Neighbors? Or are kids endangered by being inadequately supervised?

BEING GRATEFUL

[by Joanne Reynolds]

The exercise was pretty simple:

There were two concentric rings of individuals facing one another. The atmosphere in the room was subdued and sleepy. It was the first event of the morning at a conference of church musicians. Few people knew one another.

We were to look the person facing us in the eye and then say one sentence of gratitude. Uncomfortable shuffling followed the instruction.

“Oh come on now,” the instructor chided. “It’s simple. Just say one thing you’re grateful for and the person facing you will tell you what they’re grateful for.”

So we began. I spoke about the beautiful day. The person facing me was grateful for safe travel. We switched partners. I spoke of the joy of singing. The person opposite me mentioned having a job that he loved.

And so it went for ten very short minutes. At the end of the time, the atmosphere in the room had changed markedly. There was energy and laughter where there had been subdued quiet before.

I tell you this story as a reminder that we can easily shift into a positive attitude by recognizing the many blessings in our lives.

CREATE A 'HEALING GARDEN'

Look at the world through your loved one’s eyes, and you’re likely to see a lot of human-made surroundings—medical offices, pharmacies, or even the room or bed in a care institution that has become “home.”

If that’s the case, then you should make plans to provide a place where your patient can get in touch with natural surroundings in an outdoor space, or even trough a small touch of nature in a houseplant or two.

There is a well-developed movement in modern architecture that incorporates natural settings, especially in the design of medical institutions. Healing gardens, as these spaces are called, are places where patients and caregivers have the opportunity to see and interact with nature.
Hospitals across the country have made room for gardens where patients and their families can not only enjoy looking at or being in a serene environment, but can actually take part in limited gardening activities as well.

Study after study shows that measurable stress indicators drop when patients and caregivers have the opportunity to be in a garden and participate in its care.

As a caregiver, both for yourself and your patient, you need to think about how you can adopt this principle for your circumstances.

Obviously, if your patient lives at home and there is a yard or garden, then making time and creating a pathway for him or her to get into that space could be part of your daily routine together. Even a small balcony in an urban setting can provide enough space for bringing in plants that create that healing garden experience.

If your loved one is living in a care facility, find out what opportunities there are for them to be taken outdoors to see a natural setting or garden. In my hometown, where there’s ample natural beauty, there are also winters that last far too long, so indoor plants are needed to provide that touchstone with nature.

If appropriate, incorporate opportunities to interact with the plants—tending them, touching them, enjoying the sweet scent of a flower.

Our need for connection to the natural world is hard wired into every human being. Recognizing this, and then assessing where opportunities can be found to do that will help both you and your loved one to shed some of the effects of the stress of your shared medical journey.

Blessings, Joanne

A Holiday Checklist

[by Joanne Reynolds]

One of the blessings of traveling home to aging relatives for the holidays is not just the chance to celebrate with family, but to have the time and opportunity to really observe what’s going on in your loved one’s life.

While you’re decorating, roasting chestnuts, or baking cookies, use the time to take stock of your loved one’s condition. Here are some things to check out, courtesy of a list published today in the Los Angeles Times’ Home section:

• What’s their mental state? Are they confused, depressed or forgetful more than normal?
• Are they under-nourished or dehydrated because they have trouble handling grocery shopping and meal preparation chores?
• Do they bathe and clean house regularly?
• How are they handling their medications? Do they remember what each is treating and do they take them in a regular routine?
• Are they consuming too much alcohol?
• Do they fall frequently?

Elder abuse is a serious problem, so here are some warning signs if you are relying on a paid caregiver while you live at a distance:

• Recent changes in banking or spending patterns;
• The paid caregiver isolates your loved one from family and friends;
• The caregiver exhibits some behavioral problems such as poor anger control or excessive drinking;
• Your loved one seems fearful of the caregiver, or, alternatively, views the caregiver as their new best friend. Spending money on the caregiver or because the caregiver suggests it should be a red flag.

If you suspect abuse, physical or financial, contact your local Adult Protective Services (usually county-based) or local senior services office. Go to www.eldercare.gov for a listing of local senior agencies in the area where your loved one lives.

If the problems you note involve increasing frailty, then consult with your loved one’s doctor about developing a case management plan. Leaving your loved one when you’ve noticed a decline is worrisome until you have a care plan in place. Be sure to get in touch with local family, friends and neighbors to share your concerns, and elicit their help in checking up on your loved one. Be sure to give them your contact information in case of an emergency.

Blessings, Joanne

Making Life Possible for Truly Independent Single Parents

[by Kirsten]

Initiative Mission Statement:

In the United States there are a number of cultural assumptions that form the basis of traditional family life that are typically unspoken.  Largely because of the acceptance of these assumptions, systems have been set up and maintained that are counter to the reality for many people.  It is assumed that people who do not fit these norms, are at fault and that they should change to fit the assumptions.

These assumptions include:

• Children are raised by families with 2 adults
• One or more of these adults has time available to take children to the doctor, dentist, teacher meetings and to help at the public schools during traditional business hours.
• If a family does not have time to contribute, it is assumed that they have money to compensate.

In reality, a large percentage of families do not have this luxury, flexibility or live in this manner.  The pressures of these assumptions contribute to un-employability of independent single parents, and to a dependency on welfare (or other people) in order to meet the (healthcare and educational) needs of themselves and their dependent children.

Definition: 
Independent:  without help, financially or via an informal village (ie childcare swaps).  For example, an independent person holds a job with sufficient income to pay all household expenses (rent, car, food, healthcare, insurance, fitness, enrichment, educational expenses, childcare, etc.), and with a schedule of hours and effort to allow for a healthy lifestyle and sufficient time and flexibility to accomplish necessary parenting and household tasks.

The mission of this initiative is to identify and work to change systemic and structural elements contributing to the impossibility of true independence for single parents.  These elements include, but are not limited to:  affordable daycare, irregular public school calendars, required mid-day parent teacher meetings, after-school care, medical appointment scheduling, the education of girls (and elements to support those same girls as they become working women and single mothers).

The US democratic system is based on a "survival of the fittest" philosophy, which is counter to this initiative.  These principles have a tendency to become socialistic in order to provide the support required.  Without it, the direct relationship between single mothers and poverty is reinforced, as is the need and tendency for women to rely on each other through informal social-emotional networks.

What do you think?

Lives and Jobs on Hold: After a Sister's Stroke

My older sister had a major hemorrhagic stroke on January 8, 2009 and was hospitalized for almost a month in intensive care and a rehabilitative hospital.

My daughter and I found her in her home and I did neurological checks and determined that she needed to go to the hospital emergency room immediately. She was reluctant to go but finally agreed when my daughter and I insisted. Within 20 minutes of arriving at the emergency room, the doctors diagnosed her stroke and placed her in the intensive care unit for about a week.

Because of her arterial bleed in the brain, she had intensive physical, occupational and speech therapy in the rehabilitation hospital and this care followed her home. My daughter and I initially felt relieved and blessed that my sister was alive when we found her in her home after not hearing from her for almost 3 days. We were also grateful that she was recovering when they upgraded her condition and she went to a telemetry unit and finally to a rehabilitation hospital.

But, from the time of the stroke and her hospitalization, my daughter and I had to put our lives and jobs on hold and attend to my sister’s personal and business affairs. I became her temporary power of attorney, we had to clear out and clean her townhouse apartment within the month of January in order to save her from additional rental charges.