The Care Manager becomes a Caregiver

Categories: Aging Advocacy, Dementia

On May 13 my world changed.  It was a change I thought might be occurring.  It was a change I had been researching.  It was a change that I desperately did not want.  On May 13, my husband was diagnosed with frontotemporal dementia or FTD.  With those words, the care manager became a caregiver.

The journey has been difficult to date, but nothing compared to what lies ahead.  In 2009 my husband was diagnosed with hyperthyroidism.  He had lost around 25 pounds and was demonstrating symptoms of depression.  But being a salesman in the current economy was a daily exercise in frustration to say the least, so I thought I understood.  His symptoms were treated but only the thyroid tests showed significant improvement.  The depression lingered, and none of the usual medications seemed to help.

There was one symptom that made me quite curious.  My husband declined to help with our finances.  I would ask him questions about unusual bills or investment decisions that needed to be made, but he said he didn’t understand how I was handling our money.  After several attempts to explain my way, I asked him to lay out our monthly payments in a way he understood, and we would talk from his perspective.  He never quite got around to doing that.

In the meantime, our loving bond seemed to be strained and sometimes felt non-existent.  What in the world was happening???  Was our marriage in trouble?  My husband showed little interest in planning anything whether it was a trip to the grocery store or a trip to Mexico.  Something was really wrong.  Where should I look to find more answers?

Since we had covered the possible physical ailments, I decided it was time to take a look at his emotional and cognitive well-being.  I asked his doctor for an order for neuropsychological testing.  I half expected him to decline my request; instead he gave the order to me without hesitation.  The test results indicated some depression and some deficit in the executive functioning area of the brain – the frontal lobe.  Fear set in.  This must be a mistake.  Surely not MY husband!

From there we visited a neurologist who ordered an MRI.  The results were normal for my husband’s age – but we expected this outcome.  Then the doctor asked if we wanted to have a PET scan: a high-tech imaging test that looks at the brain differently than an MRI and is more accurate in diagnosing FTD.  We said yes; and the scan said yes.  Degeneration of the frontal lobe, and some left temporal lobe as well as some right temporal lobe degeneration.  Frontotemporal dementia.

Since May 13th, we have attended more doctors’ appointments, adjusted to changes in medication, applied for Social Security Disability Income (SSDI) and quit his job, completed a driving assessment (he passed with restrictions), are very thankful we had decided to buy long term care insurance, and are now living as normal as possible until the disease changes our lives completely.

I will continue my work as a geriatric care manager, but I am closing down both my blog and my podcast session with Kevyn Burger.  Both decisions sadden me deeply, but I know I want as much time to be with my husband as I can find.  Every minute of every day that I know he is in our home with me makes me happy.  I feel his presence even when he’s sitting on the deck reading or vacuuming the rugs or taking a nap.  I want to imprint these moments in my mind.

Thank you for being loyal followers.

LGBT Issues for Seniors

Categories: Active Senior Living, Aging Advocacy, GLBT, Helping Seniors, Resources, Uncategorized

Philly.com recently released an article that discussed an equality forum that was held to address problems of lesbian/gay/bisexual/trans-gender (LGBT) seniors. Advocate on Aging Deborah Dolan weighs in on the issues:

“On November 16, 2010,  Advocate On Aging posted a podcast about aging issues of LGBT seniors.  The issues are enormous as noted in this article and often create fear and uncertainty at a time we are losing much of ourselves anyway – our jobs, our friends, our way of life.  For LGBT seniors, they must face the added uncertainty of “coming out” again if they are forced to move into a retirement or continuum of care community.  For transgendered seniors, health issues may require they see doctors other than their primary care providers.  They will be required again to explain their outward presentation of one gender while coping with the illnesses associated with the other gender.  Few people – heterosexual or LGBT — have the long-term, supportive relationship that Joel and Bob (the subjects of this article) have created.  Given time I believe acceptance will occur.  Until then, may we work harder to open our minds, talk, teach and provide non-judgmental support to all who do not fit into some predetermined set of ‘normal’ lifestyle choices.”

Granting Independence to Seniors

Categories: Active Senior Living, Aging Advocacy, Caring For Elderly, Grandparents, Helping Seniors, In-Home Care, Planning, Prevention, Resources

When it comes to elder care, independence can be a difficult issue to address. While seniors might need assistance with their daily tasks, it is necessary as a care giver to allow each elderly person to keep his or her dignity as much as possible. According to Rye.Patch.com, the organization SPRYE, a New York-based non-profit that aims to assist elderly Sound Shore Medical Center residents in remaining independent as they age, has received a state grant to pay for its start-up costs. SPRYE credits State Senator Suzi Oppenheimer with assistance in obtaining the $10,000 grant.

“My hat is off to Sound Shores, Senator Suzi Oppenheimer and the State of New York for understanding the needs of their elder population and finding the funds to begin to take care of those needs,” said Deborah Dolan, Advocate on Aging.  “The only problem I see is that $10,000 is a drop in the bucket for this huge issue.  Not that I’d turn down $10,000 to help the elderly in any way, but there is a bushel basket of fast-growing needs to fill in order for seniors to remain in their homes and as independent as possible.  I love volunteers and volunteerism; I hope some of our healthiest seniors who understand the needs of their peers will volunteer to help.”

Learn more about preserving dignity for seniors.

Should other states follow New York's example to help seniors live independently?

SSA adds Alzheimer’s to Compassionate Allowance Initiative

Categories: Aging Advocacy, Alzheimer's, Dementia, Health Care Reform, Helping Seniors, Medical, Podcasts, Resources, social security

 SSA adds Alzheimer's to Compassionate Allowance Initiative [10:02m]: Play Now | Play in Popup | Download (133)

Deborah Dolan, the Advocate on Aging, and Kevyn Burger, host of the show,  discuss the Social Security Administration’s (SSA) decision to add early-onset Alzheimer’s disease to Compassionate Allowance Initiative. Under this initiative, the SSA finds individuals with certain diseases/conditions eligible for Social Security disability.

Links:

Regional Alzheimer’s Association Conference podcast

Alzheimer’s Association – SSA qualification information

Deborah Discusses “Over 90 and Loving It”

Categories: Active Senior Living, Aging Advocacy, Caring For Elderly, Grandparents, Helping Seniors, Planning, Podcasts, Resources, Retirement, Uncategorized, depression

 Over 90 and Loving It [10:06m]: Play Now | Play in Popup | Download (89)

Deborah Dolan, the Advocate on Aging, and Kevyn Burger, host of the show,  discuss the new film “Over 90 and Loving It.” The two also discuss what it means to have a positive attitude about your current stage in life. As Deborah points out, getting older doesn’t mean that you have to become sedentary! Life after retirement should still be a great part of your life.

Intimacy and Sexuality in Dementia

Categories: Aging Advocacy, Alzheimer's, Caring For Elderly, Dementia, Helping Seniors, Medical, Podcasts, Resources

 Intimacy and Sexuality in Dementia [15:17m]: Play Now | Play in Popup | Download (86)

Deborah Dolan, the Advocate on Aging, and Kevyn Burger, host of the show, further discuss The Meeting of the Minds: Dementia Conference. The Alzheimers Association partnering with the Mayor Clinic puts on a one-day conference, held at the RiverCentre in St. Paul, Minnesota, that is designed to inform, equip and support persons with dementia, family caregivers and professionals. In this podcast, Deborah & Kevyn discuss the topic of intimacy and sexuality in dementia and Alzheimer’s disease. Jan’s Story is a book written by Barry Peterson about redefining our family and romantic directives. Intimacy, Sexuality and Alzheimers Disease” was the topic of the breakout sessions with Glenn Smith, Ph.D., L.P., Professor of Psychology for the College of Medicine, Mayo Clinic.

Is there such thing as a romantic directive?

Five New Genes Linked to Alzheimer’s Disease

Categories: Aging Advocacy, Alzheimer's, Caring For Elderly, Dementia, Helping Seniors, Medical, Resources

Bloomberg.com recently reported that five new genes have been definitively linked to Alzheimer’s disease, which doubles the total number confirmed by scientists.  This found information creates new areas for research into an illness that affects 35 million people globally.

“Hope grows with every small step taken toward identifying how to immunize against, treat or stop altogether this difficult disease called Alzheimer’s,” said Deborah Dolan, Advocate on Aging. “Here’s a little more hope and inspiration to add to what we know.”

Read the story.

Interventions

Categories: Aging Advocacy, Caring For Elderly, Grandparents, Podcasts, Resources

 Standard Podcast [16:32m]: Play Now | Play in Popup | Download (67)

In this podcast, Advocate on Aging Deborah Dolan talks with Kevyn Burger about interventions. When enough is enough with the poor choices or behaviors of a loved one, interventions are often the only answer to save that person. Deborah and Kevyn discuss techniques that can help families and loved ones address severe problems, such as addictions and destructive behaviors.  Deborah shares her advice on how to initiate an intervention, who should be involved, and how to find additional resources.

Long-Term Care for Seniors: Dr. Robert Kane Shares Insights

Categories: Active Senior Living, Aging Advocacy, Caring For Elderly, Grandparents, Hospitalization, In-Home Care, Medical, Uncategorized

In a recent article from the Star Tribune, reporter Warren Wolfe dug deep into the issues that can arise while caring for elderly loved ones. The article features Dr. Robert Kane, a physician who heads the U of M Center on Aging. Kane was so frustrated with the problems he and his sister faced after caring for their aging mom that he wrote a book about the long-term care system.

Advocate on Aging Deborah Dolan shared her thoughts on the article and Kane’s work. “Dr. Kane expresses beautifully from personal experience the essence of a geriatric care manager (GCM),” said Deborah.  “He speaks well of the advocacy a strong, knowledgeable GCM can provide to elders and their family.  Even in the best of circumstances when you are an adult child of an aging parent providing the daily love and support they need can be ‘grueling,’ and a geriatric care manager can help.”

Deborah had the privilege of meeting with Dr. Kane several years ago as she was growing her geriatric care management business, and he spoke of his experience with his mother.  He had formed the on-line support group and found that he had many colleagues in a similar position of caregiving as he and his sister.  Deborah was not sure if he was promoting his number one lesson just yet, but she is glad to know the importance of a GCM has found a prominent position on his list of lessons learned.

For Kane’s work, Deborah is appreciative. “Thank you, Dr. Kane, for your support both as a care manager and as a volunteer with the Senior Linkage Line.  An additional resource of the Minnesota Board on Aging is www.minnesotahelp.info, an online directory of services designed to help people in Minnesota find human services, information and referral, financial assistance, and other forms of help’ (taken from the website).  It is a wonderful point of beginning when families are ready to take the first step in finding help for their aging loved ones.”

Expert shares insight about becoming caregiver for elderly mother

Categories: Aging Advocacy, Caring For Elderly, Resources

In a recent article from the Star Tribune, reporter Warren Wolfe dug deep into the issues that can arise while caring for elderly loved ones. The article features Dr. Robert Kane, a physician who heads the U of M Center on Aging. Kane was so frustrated with the problems he and his sister faced after caring for their aging mom that he wrote a book about the long-term care system.

Advocate on Aging Deborah Dolan shared her thoughts on the article and Kane’s work. “Dr. Kane expresses beautifully from personal experience the essence of a geriatric care manager,” said Deborah.  “He speaks well of the advocacy a strong, knowledgeable GCM can provide to elders and their family.  Even in the best of circumstances when you are an adult child of an aging parent providing the daily love and support they need can be “grueling,” and a geriatric care manager can help.”

Deborah had the privilege of meeting with Dr. Kane several years ago as she was growing her geriatric care management business, and he spoke of his experience with his mother.  He had formed the on-line support group and found that he had many colleagues in a similar position of caregiving as he and his sister.  Deborah was not sure if he was promoting his number one lesson just yet, but she is glad to know the importance of a GCM has found a prominent position on his list of lessons learned.

For Kane’s work, Deborah is appreciative. “Thank you, Dr. Kane, for your support both as a care manager and as a volunteer with the Senior Linkage Line.  An additional resource of the Minnesota Board on Aging is www.minnesotahelp.info , ‘an online directory of services designed to help people in Minnesota find human services, information and referral, financial assistance, and other forms of help’ (taken from the website).  It is a wonderful point of beginning when families are ready to take the first step in finding help for their aging loved ones.”