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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Care Options

Alzheimer’s Roundup

22 Sunday Jan 2017

Posted by Ann Napoletan in Advocacy and Awareness, Care Options, Diagnosis, Early Onset, Expectations, Face of Alzheimer's, Prevention, Round Up

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alzheimers, alzheimers diet, caregivers, caregiving, dementia, dementia village, living with alzheimers

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Who will care for the caregivers?

“There are some 40 million Americans like my patient’s daughter. Every day, they help a parent, grandparent, relative or neighbor with basic needs: dressing, bathing, cooking, medications or transportation. Often, they do some or all of this while working, parenting, or both. And we — as doctors, employers, friends and extended family — aren’t doing enough to help them.”  ~Dhruv Khullar, M.D.      Read full article

After the diagnosis…

You’re worried. Your mom has shown increasing forgetfulness for months. She even got lost going to the grocery store she frequents. You hoped things would resolve themselves, but instead, they kept getting worse. You took her to the doctor, hoping the problem was due to a bad interaction of her many medicines or a treatable infection. Instead, you got the dreaded diagnosis: Alzheimer’s. Now what?    Read full article

Dementia Village coming to San Diego

A San Diego nonprofit is taking an unorthodox approach to help seniors cope with Alzheimer’s disease. It’s building a village for them to spend time during the day. It’s not residential. But the village is modeled on San Diego in the 1950s, complete with vintage cars, period music, payphones and shops from the pre-shopping mall, pre-Wal-Mart era. The nonprofit says research suggests this type of visual reminder might improve cognitive function and quality of life of Alzheimer’s patients over 65.   Read full article

Eating for good brain health

“Diet absolutely does play a role. The brain is like any other organ that is susceptible to (foods) that can protect against oxidation damage. … Think of oxidation like a fire getting started. These (good) foods act like little tiny fire extinguishers that help put out those fires that otherwise would cause damage leading to loss of brain function.” ~Liz Applegate, Professor, UC Davis    Read full article

Living with early stage Alzheimer’s

“These days my ministry is Alzheimer’s. I am so much happier now that I’ve accepted my diagnosis. There’s a stigma associated with memory-loss disorders and oftentimes people are afraid to ask for help; I believe my calling is to help reduce that shame. You don’t have to be embarrassed to have Alzheimer’s.”  ~Rev. Cynthia Huling Hummel, D.Min  Read full article

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Long-Term Care: Extra Support When You Need It

08 Sunday Mar 2015

Posted by Ann Napoletan in Care Options, Caregivers, Guilt and Regrets, Helpful Resources, Hospice, Mom, Support system

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alzheimers, caregiver support, caregiving, hospice, long-term care ombudsman

The decision to place a loved one in a care facility is heart wrenching no matter the circumstances. When the time comes, we are filled with uncertainty, apprehension, and an overwhelming sense of guilt. They took care of us; how can we not do the same? What will people think? Does this make me a bad daughter/son/husband/wife?

 

The Critical Role of Managing Care

I think it’s so important for caregivers to understand that placing a loved one is in no way synonymous with failure. Dementia is a long, agonizing road, and not everyone is equipped to care for a family member at home. Sometimes the decision to seek assistance makes you a better caregiver in the long run.

When you place a loved one your role will change, but you will remain the most essential member of the care team. Now you will oversee their care and act as their most staunch advocate. With daily care left to a team of experienced caregivers, you can be the daughter/son/husband/wife again. You can focus on their wellbeing, creating moments of joy, and just loving them. I can’t think of a more crucial role.

But with all of that said, what resources are available to provide help when needed?

The Long-Term Care Ombudsman Program

As a nurse, Jan Larsen-Fendt spent more than 20 years working with the elderly in various settings including rehab, long-term care, and hospice. When she retired, she wanted to continue her work with the elderly in some capacity, so she trained to become an Ombudsman.

What is the definition of a Long-Term Care Ombudsman? According to the Administration on Aging:

Long-Term Care Ombudsmen are advocates for residents of nursing homes, board and care homes, assisted living facilities and similar adult care facilities. They work to resolve problems of individual residents and to bring about changes at the local, state and national levels that will improve residents’ care and quality of life.

When she completed her training and became certified, Jan said, “I felt as though I should have a cape and a shirt with a big “O” on it!! I could finally DO something about people’s complaints/concerns.”

She wants caregivers to know there are places to turn for help when issues arise in care facilities. “The Ombudsman program is a government program and works side by side with the Department of Health,” Jan explains. “If you have concerns that are not being addressed by the facility your loved one is in, contact your local Ombudsman.”

Facilities are required by law to display posters bearing Long-Term Care Ombudsman contact information. You can also consult The National Consumer Voice for Quality Long-Term Care to find the Ombudsman in your area.

Thoughts on Hospice

Jan highly recommends engaging hospice sooner than later. Unmanageable staff-to-resident ratios can and often do lead to issues in long-term care facilities. While the staff may want to do more for a resident, the workload simply might not allow it.

As a hospice nurse, Jan explains, she was charged with overseeing care and serving as a patient advocate. Hospice typically does not operate under the same staffing constraints that impede LTC facilities so they are able to provide an extra sets of eyes and ears.”

“Don’t ever hesitate to ask for a referral to hospice. Don’t let a nurse just say, ‘No, he’s not ready for that.’ It’s up to the doctor. There are many ways to get a person on hospice,” says Jan. “Hospice does not always mean imminent death. We have even had people ‘graduate’ from the program.”

Don’t Go It Alone

The bottom line is this. Even if a loved one is not under your direct, 24×7 care, your role as his or her care manager is vital. But remember, you aren’t alone. There are agencies and services you can call on for assistance. Your local Office on Aging is a great place to start; don’t hesitate to reach out to them for guidance.

During my mom’s illness, I enlisted the help of the LTC Ombudsman. The office could not have been more supportive. I was immediately struck by their passion and dedication to ensuring our loved ones are being properly cared for.

We also utilized hospice services and found the extra support to be a godsend. Mom was on hospice for a relatively short period, but during that time, the caring compassion shown to us as a family was incredible.

Please don’t wait to reach out for support; this is a journey that doesn’t have to be traveled alone.

 

 

 

 

 

 

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PBS Next Avenue

18 Wednesday Sep 2013

Posted by Ann Napoletan in A Place for Mom, Alzheimers.net, Blogging, Care Options

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Tags

assisted living, dementia, dementia village, Hogewey

logoMy friends at A Place for Mom and I are very excited to share a compilation piece recently published by PBS Next Avenue.

Welcome to ‘Dementia Village’ is based on several of our articles regarding a unique dementia care community located in Holland.

At Hogewey, residents have the freedom to roam about without restriction. They can visit with friends, shop for groceries, stop by a cafe for lunch, or just relax by the pond and enjoy a sunny afternoon. Nurses and caregivers, dressed in street clothes, are there to provide 24×7 care; however, the environment is far from “clinical.”

Sound interesting? You can read more in the PBS Next Avenue article, which can be found here.

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