Minding Our Elders®

How To Tell Your Parent That It's Time for Hospice

Our culture has historically been devoted to cure illness at all costs, and death is often looked at as "failure," no matter the age or condition of the person being treated. Many other cultures readily accept death as part of the life cycle. I believe we, as a culture, are making progress in this direction, but death still tends to be a word people avoid. If it's up to you to inform a loved one that he or she would be more comfortable under hospice care – or that a person they love will be on hospice care – there are steps you can take to get you through this difficult transition.

Read more about how to break the news that it's time for hospice:

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People who read my work on a regular basis know that I am grateful to hospice for the care of both of my parents. Without the skilled, compassionate care of the hospice staff, both of my parents would have suffered far more than they did. As it was, they’d both had long, slow declines and pain had become the focus of their days even though they received excellent care in the nursing home. When Dad and Mom qualified for hospice care, meaning that their physician considered their conditions terminal, I filled out the paperwork for each of them.

Read more about hospice and what they do:

 

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Administration on Aging programs provide assistance for caregivers nationwide

Nearly any family caregiver has felt isolated and alone at one time or another. For many, that feeling is chronic. Friends don’t understand the strain we are under. Some people get no support from their extended family or friends. Where can we turn when there seems to be nowhere to turn? Believe it or not, many resources are at your fingertips on the Administration on Aging website.

Read about the valuable resources on the AoA website:

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There’s No Timeline for Grief

Dear Carol:  My mom died six months ago and I'm still having a hard time accepting her death. I keep thinking about what I could or should have done better when she was still with me. I don't communicate my grief to my family members because they think I should be over it by now. They seem to be getting on with their lives just fine, but I’m not. Actually, I’m getting worse. Maybe it’s the holidays. When I look back, I remember complaining about being Mom’s primary caregiver and how hard it was. Now I feel guilty. Mom understood everything about me and I feel like an orphan now with no one to talk with about my past and childhood. I wish I knew then what I would feel now. Maybe I’d have been more patient.  - Amy

Dear Amy: Please don't feel guilty about the times you were frustrated with your mother. You are human, caregiving is tough and you had the bulk of the responsibility. Six months isn't all that long for grieving such a loss, and everyone grieves differently. Be prepared for tough times during this first holiday season without her. I remember writing in one column years ago about how I felt like an orphan after my mother died.

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Telling Your Loved One It's Time To Call Hospice

Our culture has historically been devoted to cure illness at all costs, and death is often looked at as "failure," no matter the age or condition of the person being treated. Many other cultures readily accept death as part of the life cycle. I believe we, as a culture, are making progress in this direction, but death still tends to be a word people avoid. If it's up to you to inform a loved one that he or she would be more comfortable under hospice care – or that a person they love will be on hospice care – there are steps you can take to get you through this difficult transition.

Read more about telling your loved one it's time to call hospice:

Purchase Minding Our Elders: Caregivers Share Their Personal Stories – paperback or ebook

Training Frontline Caregivers Essential to Care

A few years back, I had a chance to go through a rigorous caregiver’s experience by attending “Dementia Boot Camp.” Though I felt I was as good a caregiver to the multiple elders in my family as I could be, this experience, which through a combination of high and low tech methods threw me into the world of helplessness that dementia patients feel, was life changing. 

For those who want a look into how their loved ones who are extremely vulnerable must feel, read Dementia Boot Camp Part 1 and Dementia Boot Camp Part 2. By doing so you will travel the road with me  as I fumbled my way through a mind-boggling experience of feeling utterly unable to help myself, even though I knew I could stop the experiment at any time.

Read more about the value of frontline caregivers to our loved ones:

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Early Grief as Our Loved One's Quality of Life Dims

...But underneath, often unnoticed, there's a knot in our hearts. We're grieving the loss – the loss of function that made our parent need to ask for help. Weren't they the ones who helped us? Weren't they the ones in charge?

Read more about early grief as our loved one's health fails:

National TV talk show looking for siblings who have conflict over caring for aging loved one. If  you are interested, please contact me.

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Palliative and Hospice Care at the End of Life

...For weeks, each time I walked into Dad's room in the nursing home, he'd be rigid in bed, up on one elbow and slamming his fist against his hand. Pow! Pow! Pow! Over and over, he pounded fist against hand. I'd try to get him to relax; to lie back. He couldn't comprehend. Pow! Pow! Pow! He was trying to knock out the pain.

Read more about easing end-of-life pain through hospice and palliative care:

National TV talk show looking for siblings who have conflict over caring for aging loved one. If  you are interested, please contact me.

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Caregiving: What Would You Do Differently if You Were to Start Over?

As a seasoned caregiver of multiple elders, I can choose to torture myself with my perceived failures at being a perfect caregiver, or I can choose to forgive myself for being imperfect, and recognize that I did the best I could at the time. You have the same choice.

Much like an adult who realizes that he or she has a "wounded child" living inside – a child who suffers from unearned self-blame or low self-esteem because of life events – many adult caregivers carry the guilt from their "infant" caregiving years to their grave. They spend precious time thinking about how they should have understood someone's needs better, could have been more patient, would have done any number of things better, if only they knew then what they know now.

Read more about what how to let go of caregiver regret:

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How do I accept that Mom needs hospice care

Dear Carol:  My mother is 82 and has been diagnosed with terminal cancer. She also suffers from mid-stage dementia. A friend of mine who died from cancer received wonderful care from an area hospice, and I’d like to see my mother have this kind of care. The problem I’m having is making myself go through the process. Mom knows that hospice means she has been designated terminally ill, though I don’t know how cognitively aware she’ll be when we put everything in place. Since she’s stated in the past that hospice is a good organization, I don’t know why I’m struggling with this.  -Sheila

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Talking about end-of-life wishes with your parents

Few of us like to consider the fact that our parents will die. However they will. Nothing will change that fact. Good medical care, solid healthful habits, a pleasant social life – all of these may extend our years, but in the end, we will die.

Read more about talking to your parents about end-of-life decisions:

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Cancer and Alzheimer’s disease: when do we treat It and when do we let go?

A friend recently came to me in tears with the news that her mother, who is in mid-stage Alzheimer's, had just been diagnosed with breast cancer. My friend was beside herself with grief, mostly because she didn't know what to do. She felt the full responsibility of making the decision to treat or not to treat her mother's cancer was on her shoulders. I had a few suggestions for her, but only she and her family can decide what the next best step is.

Read more about cancer and Alzheimer's disease - making tough choices:

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Minding Our Elders e-book for Kindle, Nook and computers now available

In answer to many requests, Minding Our Elders: Caregivers Share Their Personal Stories is now available as an ebook. It's available in Kindle and ePub formats i'ts user friendly for your Kindle, Nookor computer. Just click on your choice below or on the right margin of the blog page under order book. It's my hope that sharing our personal caregiving stories with other caregivers through electronics as well as paperback copies way will help comfort and educate those in search of support.

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Information essential to make decision about tube feeding of dementia patients

One of the most agonizing decisions families might face can be whether or not to request or approve of a feeding tube for a loved one who is near death. Are we "playing God" by denying tube feeding to our dying loved one as long as he or she can be kept comfortable, or are we "playing God" by requesting tube feeding, with or without medical agreement? 

If the dying person left plain instructions about end-of-life medical care, made during a time of good cognition, the decision can be easier, though still fraught with emotional pain. Few of us want to be put in this situation, but many of us find ourselves facing medical people who need to know what we want done.

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Having the end-of-life discussion with your parents: how to begin?

I've found in my experience that it isn't always the elders who shy away from end-of-life talks. Some do, of course, but many would like to discuss the arrangements they've made for finances, as well as their opinions about what measures they would want taken if they needed someone to make their decisions if they can't, however the adult children often find excuses to put off that particular "talk."

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Should we tell a parent with dementia that their spouse has died?

My struggle began as we finally were able to get my suffering father into hospice care. I'd fought doctors for quite awhile, with the help of the nurses in the nursing home who knew him well, to get him better pain relief. The attitude of the doctor, who viewed his chart, was that he slept a lot, so he wasn't in that much pain.

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On Oct. 25, PBS will air Bill Moyers’ exploration of end-of –life issues “On Our Own Terms”

Emmy and Peabody Award-winning journalist Bill Moyers interviewed dozens of terminally ill patients to create a four-part exploration of end-of-life issues that span thoughts about everything from health care to cultural attitudes.

A press release that I received from PBS notes quotes of high praise:

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Two very different books about life, death and spirituality agree on major theme

Two books I’ve recently read make an odd pair, but a pair none the less, because both are about living, dying, and accepting the cycle from birth to death. They, on the surface, are quite opposite in their take on spirituality. Yet, in the end, they say the same thing – that a spiritual connection is vital for most people in order to accept the concept of death.

Read more about two books on going through the death process with spiritual help:

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Is hospice care right for my dad?

Dear Carol: What exactly is hospice care? What can I expect? I just talked to my father’s pulmonary
doctor, and my dad is at the point that there is nothing more that can be done. The doctor thinks we should consider hospice care. I'm not really sure what hospice is. I'm scared they "help" people die, and I do not want that. Does Medicare cover hospice? Is home hospice available? I'd appreciate some information. Don

Dear Don: Like any other care provider hospice organizations are unique, however they should all follow the basic premise that “no one need die in pain.”

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Excellent books for those who are dying and the people who love them

Two small books can make a big difference in a life. The combination of “Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care and the Patient with a Life-Threatening Illness,” and “Light in the Shadows: Meditations While Living with a Life-Threatening Illness,” has brought comfort to thousands of people in the past. I believe that, for years to come, these books will reach thousands more.

Both Books are written by Hank Dunn, a chaplain who has done wonderful work with hospice. These books both inform and comfort.

“Hard Choices” is informational. The book examines resuscitation, artificial hydration and nutrition, comfort care and gives examples of decision making and treatment options for ill people and their families to consider. In Chapter 5, the chaplain discusses treatment decisions, the emotional nature of struggle, letting go, the spiritual nature of struggle and other points.

“Light in the Shadows” is a companion volume of meditations. I don't feel these meditations are only for those who are dying, and the people who love them. They are very good meditations for anyone struggling with issues in their lives.

Both books are available from the site www.hardchoices.com. I highly recommend them.

 

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