Empathy for Caregivers Feed

Nursing Home Staff May Not Always Foresee an Approaching Death

Deathcomfort2Dear Carol: My 83-year-old father died recently. He had been in a good nursing home for three years, and there were no changes I his condition that I could see, yet he suddenly died. I keep second-guessing the nursing home staff for not warning me, which is probably unfair, but I can’t help but feel that they should have had some clue to Dad’s impending death. I’m not saying that they were neglectful in any way, and certainly they weren’t responsible for his death. I’m just wondering why they didn’t pick up on what was happening so that we would have had some warning. Shouldn’t they have been able to let us know that he may only have a week or a month to live? Should I ask them for an explanation? – Pat

Read the full column on Inforum about how to cope with the shock of sudden loss under these conditions:

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

“I hold onto your book as a life preserver and am reading it slowly on purpose...I don't want it to end.”  Craig William Dayton, Film Composer

Ebook on sale this week for $2.99 in honor of "the longest day" and Alzheimer's Authors


Lewy Body Dementia Caregivers Share Their Personal Experiences

FatherDaughter8...As with most types of dementia, family members are the primary caregivers by default, at least at the beginning of the disease. They are usually the people who notice that something is not right with their spouse or parent. Again, like Alzheimer’s and most other types of dementia, care needs escalate with time. This ongoing care can be physically arduous and emotionally demanding. 

Jeanne Gibbs, whose husband had LBD, illustrates her husband’s state of mind with the scenario below, which she handled like a pro:

Sometimes (but certainly not always!) the cause confusion in dementia can be determined and dealt with.

I worked at home to support us. One day my husband, Coy, was waiting for a rain-delayed baseball playoff game, and he came into my office...

Read full article on HealthCentral about some of the challenges that lewy-body caregivers face:

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

Ebook on sale this week for $2.99 in honor of "the longest day" and Alzheimer's Authors

An amazing book of stories that will touch your heart and encourage you, especially if you are a caregiver. Carol  Bradley Bursack also has an excellent website devoted to the elderly and their caregivers. - Carol Heilman


Give Your Dad the Best Father’s Day Gift Ever: Your Attention

FatherDaughter...As years go by, most of us gain–or attempt to gain–perspective. By retelling personal stories, elders are often, consciously or subconsciously, trying to reframe their life from the perspective of time. If we give them the gift of attentive listening, we may find their stories more interesting and even learn something new about them. Since an elder’s history is part of our own, we might learn something new about ourselves, too. This mutually beneficial activity is the perfect gift for Dads this Father’s Day.

Read the full article on Agingcare about how much your attention can mean to both of you on Father's Day:

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

“I hold onto your book as a life preserver and am reading it slowly on purpose...I don't want it to end.”  Craig William Dayton, Film Composer


Cruel Remarks Follow Plan to Move Husband Into a Nursing Home

Comfort14Dear Carol: My dad had a massive stroke five years ago when he was 78, and Mom, who’s the same age, is caring for him at home. Mom's finally realizing that she can’t keep this up because her health is declining. I live 500 miles away so I can only help so much. Mom’s tried hiring in-home care but that hasn’t worked out consistently so Dad’s on a list for a nearby nursing home. Having to make this move is heartbreaking for Mom but she knows that it needs to be done. The problem is Dad’s sister, who is also Mom’s friend. She’s been laying guilt on Mom saying that Mom’s not honoring her marriage vows if she moves Dad. This woman has been a widow for 30 years and her husband died suddenly of a heart attack. She has no idea about what Mom’s been through. Mom’s moving ahead with the plan, but my aunt’s bitter words are painful for her. Mom reads your column. Could you give us both some support? TM

Read full article on Inforum about the cruelty of being judged for placing a loved one in a nursing home:

Support a caregiver or jump start discussion in support groups with real stories - for bulk orders of Minding Our Elders e-mail Carol


June is Brain Awareness Month: Helping Caregivers Cope

WheelchairmanJune is Alzheimer’s and Brain Awareness month. What better time to become educated about how to help people who have dementia live a better quality of life, help caregivers with support and resources, and teach others about the many types of dementia and other brain diseases? The National Alzheimer’s Project Act (NAPA) was signed into law in 2011. Since that time, milestones have been identified to meet the plan’s biomedical research goals. But until recent years, the creation of similar milestones on patient care and caregiver support has lagged.  In 2014, the Alzheimer’s Association Workgroup published recommendations – including patient-care milestones – to augment the U.S. Government’s “National Plan to Address Alzheimer’s Disease.”

Read more on HealthCentral about Alzheimer's and Brain Awareness Month and tips on how caregivers can grow:

Support a caregiver or jump start discussion in support groups with real stories - for bulk orders of Minding Our Elders e-mail Carol


Father's Day Memories: Dementia or Not, He’ll Always Be Your Dad

MindingOurEldersCoverFullThis Father's Day, as on all days, I'll have fond memories of my dad. So will many of you. No matter what has happened to our parents as they age, they remain our parents. Cognitive and physical decline don't take away their legacy as adults. We may have to provide some care that many would consider demeaning, but given in love, no care is demeaning. Part of that love is keeping in mind that this person is our parent, the person who raised us. Respect and preservation of dignity are their due.

Read full article on Agingcare about how dementia doesn't take away our Dads:

Support a caregiver or jump start discussion in support groups with real stories - for bulk orders of Minding Our Elders e-mail Carol


Often Surgery Seems the Only Choice, Yet Results Can Devastate

DeathDear Carol: My world changed in an instant when, at age 45, my mom suffered a brain aneurysm. Because of that, she had to undergo brain surgery which left her with dementia and severe physical limitations. I quit my job and took Mom home and cared for her for three years. Fortunately, my husband has been supportive and we could afford it. Eventually, Mom’s care needs were overwhelming me and I had to move her to a nursing home. I haven’t been able to drop the guilt that I feel over doing this even though I spend time with her daily.  Mom barely speaks and she’s in and out of reality. Mostly, she sleeps. The doctor calls this the natural progression of the disease. They gave me such hope with the surgery, but afterward, they just brushed off her dementia with the attitude of “it happens.” That attitude still makes me angry. Could I have done something different? – Trish: 

Read full column on Inforum about how even necessary surgery can have devastating results:

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

The stories in this fine book showed us how others have gone through similar things with their families and that is somehow reassuring. There are some helpful suggestions but mostly there is the recognition that others went through the same thing. All we can do is our best. That is greatly reassuring during these difficult emotional times. If you are a caregiver, this is a must read. - Delores Edwards


Where Is the Line Between Caregiver Stress and Burnout?

CaregiverStressEvery person who becomes a caregiver will have unique personality traits, yet we nearly always share certain feelings and experiences as we travel a road similar to one another. That’s one reason that caregivers often turn to other caregivers for support. It’s a version of the adage that we need to walk in another’s shoes in order to truly understand what they feel. One of those shared experiences is a certain amount of stress. Some personalities cope with the ever changing, nearly always challenging, business of caring for another adult with health issues better than others. A positive attitude and a flexible approach can go a long way as we feel our way along the sometimes uncertain path a caregiver must follow. But even the most laid back person is going to feel stressed by the responsibilities of caregiving from time to time. That’s normal and to be expected. With some care, people generally bounce back. What caregivers need to watch for is burnout.

Read full article on HealthCentral about the line between caregiver stress and burnout:

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

The stories in this fine book showed us how others have gone through similar things with their families and that is somehow reassuring. There are some helpful suggestions but mostly there is the recognition that others went through the same thing. All we can do is our best. That is greatly reassuring during these difficult emotional times. If you are a caregiver, this is a must read. - Delores Edwards


Caregiver Tells of Harrowing Experience in Handling Parents' Finances

FinancesFinances can be a difficult topic to discuss in some settings, and talking with aging parents qualifies as one of those. But it’s essential that families discuss finances and how they will be handled when — not if, but when — one of them becomes incapacitated physically or mentally. Wise people appoint a trusted person as power of attorney (POA) before there is a health crisis. In the case of caregiver Marianne Sciucco, author of Blue Hydrangeas, an Alzheimer’s Love Story, the legal documents for her parents were signed in time — barely.

Read full article on HealthCentral about the importance of getting financial documents in line early:

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

“I hold onto your book as a life preserver and am reading it slowly on purpose...I don't want it to end.”  Craig William Dayton, Film Composer


Communicating With a Person Who Has Dementia Takes Skill, Heart

CaregiverWheelchairCommunicating with someone who has dementia can be an ever-changing challenge. But some things never change. One of those constants is that caregivers and friends must fully understand and accept that the person with dementia is not a child any sense of the word. Dementia may have robbed our friends or loved ones of their ability to understand their own environment, follow a sequence of directions or even understand how to use the toilet. These issues do not in any way make these people less than adults and they should never be treated as such. Treating our elders with respect and dignity means understanding that lost cognitive ability doesn’t take away their adulthood. Elders have lived a lifetime and have left a legacy - some more admirable than others. However, nothing they have done or not done during their lives turns them into overgrown children.

Read full article on HealthCentral about what it takes to be a dementia caregiver:

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

The stories in this fine book showed us how others have gone through similar things with their families and that is somehow reassuring. There are some helpful suggestions but mostly there is the recognition that others went through the same thing. All we can do is our best. That is greatly reassuring during these difficult emotional times. If you are a caregiver, this is a must read. - Delores Edwards