When You Are the One and Only Caregiver

April 18, 2011 By toughconversations Leave a Comment

Occasionally we meet individuals whose first response to our mentioning Tough Conversations is: “I was the one and only caregiver for my (fill in the blank: mother, father, grandparent, etc.)” “Do you have siblings?” we ask. Sometimes we hear no, other times, yes. If yes,  “Weren’t you able to get their support, or access help from other sources?” is our next query. Again, sometimes yes, other times, no.
The bottom line among many families is that one adult child becomes ‘the one and only’ caregiver; the sole custodian of financial and health care responsibilities, or end-of-life and change-of-residence needs.
Some have nowhere else to turn; others call on social service agencies for assistance. One friend commented that she was so focused on caring for her parents, she never thought of asking others for help. As a result her memories of caring for her mother are filled with resentment, anger, and fatigue.
For those of you who are or were “the one and only” we invite you to share your insights of what it is (or was) like be a sole caregiver. There must be many of you flying alone. What can we learn from your experience? What advice, suggestions, or counsel would you share with others? What kinds of tough conversations do you wish had taken place but never did?
We hope you’ll share your thoughts about what it’s like to be ‘the one and only.’
Sig Cohen

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If You Died Suddenly

January 16, 2011 By toughconversations 1 Comment

Who is the main accountant in your family? The key recordkeeper? Holder of your credit card history, insurance policies, medical infomation, and data on retirement and brokerage accounts, etc.? If only one of you is the font all this wisdom, listen up:

What if this all-knowing seer (you, maybe?) can no longer remember, share, provide, or communicate this information to other family members because of illness, an unforeseen crisis, or even death?

Storing this in a computer doesn’t mean anything if your family members lack keywords and passwords, or don’t even know that the data is stored…somewhere. If all this information is in your computer, have you backed it up on a hard drive? If yes, where’s the hard drive? Next to the computer? Or stored in a separate location? Or is it on a ‘thumb drive’ that you have stored in a safety deposit box?

Have you made hard copies (paper) of this information? Is the information in one or more locations, a file, or better, in a safety deposit box? If yes, how many family members know where it is? Have they seen the file? If they don’t live in your town, have you given them instructions as to how to retrieve this information?

Sorry to nag. But I just read about a guy who had shared all his information with his children but one item: what life insurance policies he owned. After his unexpected death it took weeks for his kids to comb through six file cabinets of papers to finally locate his insurance information. Were he still alive, that would have been one tough conversation hs kids  didn’t need to have.

To avoid such tough conversations between you (or your spirit) and your remaining family members, add to your New Year’s Resolutions this one: You will assemble, collate, organize, store, etc. all the financial and medical information your family may need in case of your death. And make sure your spouse, offspring, whoever you deem essential will have copies of all this data or have access to where it’s stored.

Two organizations have made it easy for us to organize this information: A special thanks to the American Postal Workers Union and the Screen Actors Guild for their printable vital records organizers. (http://www.apwu.org/dept/retiree/survivorsguide0909.pdf) (http://www.sagph.org/html/vital.pdf).
Happy Organizing!
Sig Cohen

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The subtle sounds of age-ism

November 29, 2010 By toughconversations

Try this on: A friend told me that her aunt who lives in an assisted living facility (I hate that word, facility. It sounds more like a factory or a warehouse for the infirm than a home or residence.) Anyway….
One night her aunt woke up hearing the sound of someone in her room. When she asked who was there, the person quickly left.
When her aunt mentioned the incident to an aide, the latter dismissed her report saying: “You were probably having a hallucination.” That sent her skyward. My friend’s aunt’s mental faculties are as sharp as a teenager’s (that may not be saying much these days, but you get what I mean). The aide summarily dismissed her report, not by saying she’d check it out or asking for more information, but by demeaning her. The aide assumed that this older person had to be over-medicated, suffering from a dizzy spell, or simply delusional.
As it turned out, a night attendant HAD entered her room and failed to identify himself when challenged.
So much for the delusional, hallucinating aunt. But will the aide, or for that matter, any of us continue to assume that older persons are lacking in mental acuity the next time they report something that seems on the edge of reality?
Sig

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Stopping the Driving/Retaining Some Self-Respect

November 25, 2010 By toughconversations Leave a Comment

A recent issue of The Washington Post carried an article about how to encourage elderly parents or relatives to stop driving due to a real or perceived inability to safely handle a vehicle.
The article cited a number of instances where a family decided to overtly or surreptitiously take the car keys from an elderly parent or relative. Tactics ranged from keeping or even hiding the keys to conspiring with a family doctor to inform the elder that he or she is no longer capable of driving.
These are not ‘tough conversations.’ They amount to a mandate. Or an intervention. Or worse, a preemptive move against an older driver. How humiliating this must be for the elder, even if he or she lacks the capacity to safely operate a vehicle any longer.
Unless the driver in question suffers from dementia or another debilitating illness, he or she should participate in the conversation as a stakeholder in his or her transportation future. Only when an elder is part of the conversation, feels respected, and contributes to the plan does this qualify as a ‘tough conversation.’
Tough conversations have stages. First is problem recognition: does the elder have sight or hearing problems? Slower reflexes? A tendency to lose his or her way in once familiar surroundings?
Next, prepare for the conversation by identifying resources, in this case transportation services. Fourth is the most difficult: namely engagement. What follows is decision making, devising a plan and implementation. While the discussion may get hot and heavy, the elder remains a player, not a side-lined has-been. Tough conversations are inclusive. Sometimes lengthy. Rarely easy. And at times unproductive.
But they preserve an elder’s dignity and self respect. And most of all, if conducted with care and patience, they strengthen the family fabric.

Sig Cohen

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The Moment of Change

October 22, 2010 By toughconversations Leave a Comment

Every time I talk about my work in Tough Conversations I hear a story. And most aren’t very happy.
Recently a friend told me about her parents who live in Buffalo. Her Dad has early Alzheimers; Mom has been his caregiver. My friend and her brother both live in Washington. Mom was doing fine as caregiver until the day she fell on a freezing sidewalk and broke her right wrist. Unfortunately she could not stand up using only her left arm. And she had neither a cell phone nor wore a Lifeline emergency call necklace. The streets in her neighborhood were deserted, and there was no one to whom she could shout for help.
My friend told me that her mother had to drag herself through the snow some 50 yards to the door of a neighbor who thankfully was home and could call 911.
That day life changed radically for my friend and her brother. Since her mother could no longer cook, perform housekeeping chores, or care for her husband, she and her brother would now have to fly to Buffalo on alternate weeks to care for her Mom and Dad.
In retrospect it was only a matter of time before such an event would alter the delicate balance of care and support that she, her brother, and their mother had created around the deteriorating state of her Dad. What could this family have done to save her mother the indignity and discomfort of dragging her exhausted body through the snow to her neighbor’s front door? As important, what steps could they have taken to ensure that the adult children’s lives wouldn’t have to change so drastically?
1. Provide her mother (and every caregiver for that matter) a Lifeline or other kind of emergency call system.
2. Ditto for a cell phone.
3. Compile a resources folder with a list of local caregiver agencies, doctors and their phone numbers and addresses, as well as a run-down of emergency facilities and police.
4. Develop a contingency plan for the day when Mom might not be able to fulfill her caregiver responsibilities. This includes a move to Washington or wherever the adult children live.
The list goes on. But the most fundamental question remains: When should contingency planning begin?
The answer is: NOW.

Sig Cohen, Tough Conversations, a Division of Beyond Dispute Associates.

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“SHIFTS HAPPEN”

September 26, 2010 By toughconversations 1 Comment

I smiled when I saw this on a button at a mediators’ conference, and I thought about when shifts have happened for me. For instance, as a Judge I had to know the right answers. Now, as a mediator, I’ve learned that asking the right questions and listening to other people’s stories is more important and a surer route to wisdom—and to the best answers in the situation.

When it became clear that Mom with Alzheimer’s and Dad with stage 4 prostate cancer could no longer live alone my husband Jerry and I decided to invite them to live with us. I had a lot of misgivings, especially about Mom, but given everybody’s circumstances it seemed like the best solution. I speak Spanish and have many Latino friends. Whenever I told Gringo friends what I was contemplating, they’d say, “Are you sure you want to do that?” Or “How generous of you!” Or “Have you thought of …. [Name your alternative]?” This pretty much reflected my own doubts.

But my Latino friends without exception said things like, “Oh, I envy you! I wish I could take care of my parents!” Or “I’m so happy for you!” or “That’s wonderful!” (Not as in, “How noble you are!” but as in “You won the lottery!”)

I was amazed. I started to realize there was more than one way to think about this, and I began to try to see this change in the family as a blessing.

I don’t want to sound like Pollyanna. Caring for parents in your home is not for everyone. Mom  eventually needed more intensive care than we could give. But Dad lived with us until he died at 92, and he knew he was wanted and loved.

Jerry once was cleaning a wound Dad had received from falling, and Dad said with tears in his eyes, “I hate to be a burden.” Jerry said, “Art, if it’s a burden, it’s a sweet burden.” And he meant it from the heart.

Carolyn   

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