Two Alzheimer’s Caregivers: Straight from the Heart

25 Saturday Jul 2015

Posted by Ann Napoletan in Advocacy and Awareness, Blogging, Caregivers, Events, Face of Alzheimer's, Family, Inspiration, Music and Art, Ruminations, Smiles, Support system

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alzheimers, alzheimers advocate, alzheimers caregivers, alzheimers music, alzheimers music festival, dementia

Image Source: morguefile

I’ve seen a couple of posts this week that have really touched my heart. Allan Vann and Vince Zangaro are on very similar, yet different paths. One of the things they have in common is their willingness to share their stories to raise awareness and bring hope and comfort to other caregivers.

Allan Vann

Allan Vann is a talented blogger who has published hundreds of insightful, informative articles on his blog. He also recently began writing a column for the Huffington Post and was interviewed by CBS news last week.

Allan’s wife, Clare, was formally diagnosed with younger onset Alzheimer’s at age 63, but had been experiencing signs for several years before that. Allan cared his wife at home before making the difficult decision to place her in a care facility. However, he learned that doing so allowed him to be her husband again, rather than her 24×7 caregiver, which was a true gift to both of them.

Image Source: CBS News

The CBS interview captures the pain of slowly losing a loved one to Alzheimer’s with a raw, emotional accuracy.

Although it was my mother rather than spouse that I lost to this horrid disease, so much of what Allan says rings true to me. The arguments were the most difficult – early on, we fought about everything, and that was so uncharacteristic of our relationship. So sad to think about it…

Vince Zangaro

Vince Zangaro was just 29 when his father was diagnosed with Alzheimer’s ten years ago at age 62. He & his wife, Amy, are full-time caregivers and by sharing their journey, they help others to stay afloat.

Vince had a wonderful piece published on The Caregiver’s Voice this past week. One of the things that makes it unique is that Vince wrote it from his father’s perspective.

When I open my eyes in the morning, I feel scared. Where am I? Where have I been? Do I know this place? I look to the right, and the people there are sleeping soundly. I can’t remember who they are, but I know they love me and I love them; I feel safe.

Image Source: Facebook

Read the full piece here.

In some ways, Vince’s posts and his videos make me miss my mom even more, but mostly they remind me of all the happy times we shared even as she fell further into the clutches of Alzheimer’s. His words also illustrate how having a loved one with Alzheimer’s changes our lives, and how that often results in us becoming better human beings.

One of his recent Facebook posts provided a simple, yet invaluable tip, in such a heartwarming way.

“I have learned when giving dad a hug to have it last a minute or longer. After the 60 second mark you will start to see him grasp the moment. It doesn’t always take medicine to help someone you love.”

And then there’s this video that makes me smile and cry at the same time… if it was possible to make a 3-minute video that defines love in its truest form, this is it.

Vince is also founder of the Alzheimer’s Music Fest which you can read more about on Facebook or at the event website. If you’re in the Duluth, GA, area, check it out!

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.

Alzheimer’s Caregiving: Thoughts for the New Year

28 Sunday Dec 2014

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregiver Burnout, Caregivers, Guilt and Regrets, Helpful Resources, Ruminations, Support system, Tips

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alzheimer's books, alzheimers, alzheimers caregivers, alzheimers support, caregiver stress, caregiving, dementia, respite care

As 2014 New Year 2015 draws to a close, I’ve been thinking a lot about the pressure caregivers feel to be perfect. I see this on a regular basis through my role as co-moderator of the USAgainstAlzheimer’s online support community. Family members find themselves drowning in guilt because they’ve set unreasonably high expectations for themselves; often these expectations are so lofty that no human being could possibly live up to them.

I think an admirable goal for 2015 is to be more gentle with yourself. Pay attention to your self-talk, and when you realize you’re beating yourself up, make a conscious decision to S-T-O-P. I know it’s easier said than done, but try and have faith in the decisions you make, for there is no doubt you are doing the very best you can.

As don Miguel Ruiz reminds us in The Four Agreements, your “best” will be different from day to day, perhaps from hour to hour. When you are sick with a winter cold or exhausted due to lack of sleep or simply at your wit’s end, your best will be different from when you are feeling 100%. That is a fact, and that, my friend, is okay.

Here are four things I hope you’ll consider in the coming year.

Join a support group. Check with your local Alzheimer’s Association chapter or look into an online support community like the USAgainstAlzheimer’s Facebook Community. There is immeasurable comfort in simply knowing you aren’t alone. I resisted seeking support during my mom’s illness, and by doing so, I shouldered more on my own than I needed to.

If you care for a loved one at home, seek respite. There is no shame in caring for yourself. In fact, it’s a necessity. Your ability to do what’s best for your loved one depends on your own physical, emotional, and mental wellbeing. The National Respite Locator is a wonderful place to start when searching for assistance.

Check out Seasons of Caring: Meditations for Alzheimer’s & Dementia Caregivers. This one-of-a-kind book was recently published by ClergyAgainstAlzheimer’s (CA2). Available for only $3.99 on Kindle and less than $15 in a lovely paperback edition, all proceeds benefit CA2 in their work to support caregivers and stop Alzheimer’s. This interfaith book contains over 140 original meditations by 70 leaders in the faith community, care specialists, and caregivers. I’m proud to be a contributor to a book I believe will provide infinite amounts of hope and encouragement to dementia caregivers around the world.

Do something to raise awareness or support other caregivers. Whether you simply share an article on social media or write a blog post, participate in your local Walk to End Alzheimer’s, or offer support to a fellow caregiver online or in person, paying it forward will give you a sense of purpose. The single thing that has helped me most in this journey has been reaching out to others.

I wish each and every person who visits this page a blessed 2015. May you find support, comfort, and peace of mind in the coming year.

With love,
Ann