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Lewy Body Dementia: Caregivers Share Their Personal Experiences

FatherDaughter9...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. Coy: Do we have umbrellas for both of us? Me: Umm… for what purpose?

Read full article on HealthCentral about caregivers and their partners who live with LBD:

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

Minding Our Elders lets you know that you are not alone, that you are not going to be perfect, but you can get the job done, You do the best you can, and that is good enough. We can't be Carol, but we can learn from her going before us. What a friend to have. What a gift she gave us. – CM Jones


Capgras Syndrome: Coping with a Loved One's Delusions

Grief1Capgras is a type of delusional misidentification syndrome (DMS) that may present due to any number of neurological diseases or psychiatric disorders. Although the exact prevalence of this disorder is unknown, a 1999 study estimates that it is present in between two and 30 percent of individuals with Alzheimer’s disease. This disorder can seriously complicate a dementia patient’s quality of life and their caregivers’ efforts, so it is crucial to spread awareness of this little-known condition.

Read more on Agingcare about how delusions can be a part of Alzheimer's:

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


12 Tips to Help Spousal Care Partners

Oldercouple6While family members who provide care for loved ones share many issues, there’s a different emotional dynamic between caregiver and care receiver when the care partners are spouses than when they are an adult child caring for a parent. Here, we offer some tips for spouses.

Personal space: Giving one another personal space is important to many marriages. This doesn’t change when one spouse has health issues that must be addressed by the well spouse.

View full slideshow on HealthCentral about maintaining a healthy relationship with spousal care partners.

I'm honored to be among over 50 presenters in this summit who want to help make your caregiving journey easier. Click the image to learn more:

caregiver smile summit

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


Reminiscing Can Be a Powerful Drug for People Living with Dementia

FatherSonthnkstockMany people around the country are now recording or even videotaping their elders as they tell stories about their past. This works for some. However, you need to know your loved ones. Not everyone wants to be on stage, so to speak, and preparing to record, even discretely, could take the spontaneity and fun out of the experience for some. Others may love it.

My family would have been put off by a formal approach with a tape recorder. For them, the stories were a natural part of some one-on-one time when I could ask a question that may stimulate a memory. They also often talked about the past with each other, and if I was nearby I’d soak it in. I do admit to wishing I’d been taking notes because I know I’ve lost details. Yet I’m heartened by the new research that shows that the telling of the stories may have helped their cognition as much as their moods.

Read full article on HealthCentral about how to help your loved one by listening:

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

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Families Can Take the Brunt of Elder Rage

AgressionIt's not really news that people tend to be their worst with the people they love. Generally, this is thought to be the case because people feel safe enough with family to just "let it all hang out." Their anger at their circumstances, which may or may not have to do with these family members, is the real cause. Other times, the behavior is because the person has an abusive personality with deeper problems lurking. Whatever the reason, it's not good. We owe the people we love our best selves. Not our "dressed for company" selves, but our compassionate, honest selves. However, most humans are imperfect creatures. They will take out their frustrations on people they feel won't desert them.

Read the full article on Agingcare about how some elders can abuse their caregivers:

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

I'm honored to be among over 50 presenters in this summit who want to help make your caregiving journey easier. Click the image to learn more: 

caregiver smile summit


Reasons Why Some Caregivers Say “No” to Help

HELPThe Instinct to Protect: While many caregivers come to terms with the fact that we can't make our loved ones completely healthy again, we still want to be the person who provides care and safeguards their well-being. This protective instinct is powerful and hard to overcome.

Sign up for the Caregiver’s Smile Summit: 0ver 50 Experts on Caregiving, Aging, and Care Partnering

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


Broken Heart Syndrome Hastens Death of Some Spouses

HeartDear Carol: I read one of your articles which said that you had lost both your parents in quick succession so I identify with you. I live in the UK. In early March, I lost my father, aged 92.  He didn't want anyone with him when he passed away. Then, exactly two months later, my mother, aged 88, passed away at home. She waited until I was holding her hand, then she squeezed my hand, slightly opened her eyes to look at me, and peacefully passed on. Mum and I had talked about the future and I told her I would always live near her, or with her, if she preferred. She had seemed fine, but shortly after Daddy's death, she was diagnosed with metastatic cancer. Mum passed away within three days of leaving the hospital. I was able to tell her how much I loved her, but then I had to let her go. I just wondered how quickly your Mum passed away after your father, and if you believe that your mum didn't want to go on without her husband. Thank you for reading this. – Meghan

Read full column on Inforum about broken heart syndrome:

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


Care or Cure: Where Should Alzheimer's Funding Go?

ResearcherWhen you hear the next plea for increased Alzheimer’s funding – and you’ll hear a lot of it during the upcoming Alzheimer’s Awareness months, both global and national – your first thought will likely be that the money should go into to find a cure. However, people who already have the disease, as well as those who care for them, may disagree. A recent survey showed that these people feel that more financial resources should be dedicated to helping them live life with some quality. Funding research is fine, but that will only help people years in the future. They need help now.

Read full article on HealthCentral about the controversy when it comes to funding Alzheimer's:

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


Caregiving Rewards Often Outlast Challenges

Caregiving6Many people are providing intensive care for adult children, others for parents or spouses. I feel it’s safe to say that all of us, with our diverse caregiving responsibilities, have had times when we wonder if we can go on. Conversely, nearly all of us have also had moments when we’ve looked at the people we are caring for and realized that being a caregiver is not just a responsibility, but an honor.

Read the full article on HealthCentral about how caregiving rewards can affect our lives forever:

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


Is Alzheimer's As Hard on the Caregiver As the Person with the Disease?

AnxietyIt seems shocking to hear people ask whether dementia, particularly Alzheimer’s since it’s the best known, is as hard on the caregiver as it is on the person with the disease. After all, developing dementia of any kind is one of our greatest fears, even overtaking cancer. A caregiver who asks this question must be incredibly heartless and selfish, right? Yet, people who’ve never been a caregiver for someone with dementia need to think this through. When a loved one develops dementia, both the care receiver and the caregiver have entered an incredibly challenging time of their lives.

Read full article on HealthCentral about Alzheimer's and the toll it takes on the caregiver:

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

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