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

Tags

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.

Still Alice: Breaking Through Old Stereotypes

28 Saturday Feb 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Books, Celebrities, Early Onset, Face of Alzheimer's, Films, Helpful Resources, Inspiration

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alzheimers, alzheimers awareness, alzheimers stereotypes, dementia, julianne moore, still alice, younger onset alzheimers

This past week, I had the pleasure of attending a screening of Still Alice followed by a panel discussion organized by our local chapter of the Alzheimer’s Association. I’d seen the film the first day of the wide release, but watching it for the second time was a completely different experience.

The event was sold out, which in and of itself felt like a victory. Just being in that space with so many people united in the dream of a world without Alzheimer’s was overwhelming.

Julianne Moore’s portrayal of Alice is brilliant, no doubt largely due to the careful research she did for the part. Last month, Sandy Oltz, Moore’s personal consultant and inspiration for the film, spoke at the Alzheimer’s Association’s Leadership Summit in Orlando. Sandy was diagnosed with younger onset at age 47. In many ways, she is the real life Alice; educated, accomplished, strong, beautiful, a wife and mother, and living with Alzheimer’s.

Please do not think I am suffering. I am not suffering. I am struggling, struggling to be a part of things, to stay connected to who I once was. So, ‘live in the moment’ I tell myself. It’s really all I can do, live in the moment.

Sandy Oltz

Whether or not to see Still Alice, or when to see the movie and in what setting, is a very personal decision. I had the book on my Kindle for a couple of years before I worked up the courage to read it, and then it was only because I was going to be hearing Lisa Genova speak.

If you have lived the reality of Alzheimer’s disease, this film will be difficult to watch. It will inevitably remind you of moments with your own loved one: moments of anger, frustration, and fear. But it will also bring forth memories of a love the depth of which cannot be described. A love that goes far beyond words into a realm we never knew existed.

Still Alice has the power to change the way the world views Alzheimer’s. This movie represents a breakthrough. Alice is far from the stereotypical Alzheimer’s patient, and the message is simple: Alice Howland could be any of us.

There but for the grace of God go I.

We can only hope that as this powerful film works its way into the mainstream, people are inspired to join the movement to #ENDALZ. Because at the end of the day, it’s really just about love…

An Open Letter to Kent Wolgamott and the Lincoln Journal Star

22 Sunday Feb 2015

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Mom

≈ 14 Comments

Tags

alzheimers, columnist kent wolgamott, dementia, lincoln journal star

Dear Mr. Wolgamott,

My name is Ann Napoletan and I lost my mother to Alzheimer’s disease two years ago. I’m a passionate advocate in the fight to end this horrific disease and I found your recent reference to Still Alice as a “depressing ‘disease of the week’ movie” disturbing, disrespectful, and beyond insensitive.

The journey through Alzheimer’s with my mother changed my life forever, and I hope and pray you are never faced with watching a loved one slip away, over the course of years, in such a heartbreaking way.

My mother retired from a successful career at age 61 and began to show signs of cognitive decline shortly thereafter. She declined rapidly. Before my eyes, she transformed from a vibrant, independent woman – my rock – overflowing with life – to a terrified child who could not speak and needed around the clock care.

I have witnessed things no daughter should ever have to see; and she experienced things that no human being should ever have to suffer through.

I was robbed of too many years with this woman I loved so much; I was in my late 30’s when she became ill. She was robbed of the beautiful retirement she worked so hard for and dreamed of.

Take a look at this photo taken shortly after my mother retired, then compare it to the one accompanying this article. Aside from Alzheimer’s, she had no medical problems. THAT, my dear misinformed friend, is how someone DIES at the hand of the “disease of the week.”

In the space of four little words, you managed to blatantly disparage the suffering of over 5 million Americans living with this disease as though what they and their loved ones are living through is little more than a case of the chicken pox.

Shame on you for using the phrase, and shame on the Lincoln Journal Star for publishing these words.

Sincerely,
Ann Napoletan
#ENDALZ