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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Guilt and Regrets

Goodbye 2017: Onward and Upward

01 Monday Jan 2018

Posted by Ann Napoletan in Caregivers, Grieving, Guilt and Regrets, Life After Caregiving, Ruminations, Saying Goodbye

≈ 12 Comments

Tags

2018, alzheimers, caregiving, grief, grieving, life after alzheimers, long distance caregiving, losing the second parent, loss of passion, new year

Years ago, when pondering names for this blog, I chose the tagline “An Alzheimer’s Journey and Beyond.” The tagline stems from the life-altering nature of the Alzheimer’s experience and the fact that a new kind of life exploration continues long after Alzheimer’s ends. This post falls into the “and beyond” category.


As I sit ruminating on 2017, I would have to say I’m happy to put it in the past and begin anew. I can’t find the words to describe the past year in simple, straightforward prose and I suppose that’s appropriate as it wasn’t a simple year in terms of emotional turmoil.

February was the beginning of a steep decline in my dad’s health. He had suffered from heart problems for 25+ years, but what we were seeing was notably different. His CHF was becoming increasingly problematic and between February and June, he was hospitalized at least four times.

Dad’s determination to remain independent until the end made long-distance caregiving exceedingly difficult. Aside from twice-to-thrice weekly visiting nurses ordered by his long-time cardiologist and daily Meals on Wheels (which he loathed and barely ate), he refused any sort of help. And the fact was, he needed assistance.

I made the 7-hr round-trip drive 2-3 weekends per month, but it wasn’t enough to manage all that needed to be done.  I loved my dad dearly, but he wasn’t easy to handle – he was depressed, angry, stubborn as a mule, and no doubt frightened as well; all of that combined could bring out a mean streak that was unpleasant at best. He often lost sight of the fact that I was simply trying to help.

June 2016

In my heart of hearts, I think he knew the time was coming when he would need full-time care, and rather than face the prospect of leaving the house he loved, he gave up. He suffered a neurologic event of some sort at the end of May and never came out of that. By the time we arrived, I barely recognized him. Thankfully, he was able to hear and understand us that day, responding with a blink, squeeze of a hand, gesture, or a few hard to understand words, but he never opened his eyes.

After consulting with the most wonderful palliative care doc, we agreed to call in hospice. Dad was transferred to a beautiful hospice facility, where we sat at his side for nine days. He passed away peacefully on June 3. He would have been 84 on June 12. I still find it hard to believe that he’s gone, and it’s such an odd feeling to realize you have no living parents.

Between June and November, there was estate paperwork, cleaning out the house I’d grown up in, hiring contractors, and ultimately selling the property. We closed in early November and I brought home the last boxes of Dad’s belongings the week before Thanksgiving. Over a month later, the boxes are still sitting in my living room untouched.

I’m still working through grief and regrets. Those days in hospice with Dad also brought back vivid memories of my mom’s final days. If I learned anything from my her passing, it was that grieving is complicated. It takes time, it can’t be forced, and it sneaks up on you when you least expect it.

So, all of that, combined with residual grief from some things that occurred in 2016, a demanding, high-stress year at work, and the general state of the world, has left me feeling adrift. I seem to have lost my passion and I miss it, but I’m not sure how to get it back. I’m hoping time is the answer. My life is rich with blessings and I know that this, too, shall pass.

Grief is in two parts. The first is loss. The second is the remaking of life. ~Anne Roiphe

The thought of a new year brings hope. This will be the first year, since age 19, that I haven’t been a caregiver in some capacity. Now, at 52, with a family history of both Alzheimer’s and heart disease, it’s time to develop some healthy habits. I want to focus on improved diet, yoga, and meditation, along with making a sincere effort to reduce work-related stress. In short, during 2018, I hope to find a place of balance along with the passion that has slipped away over the past 12 months.

May the coming year bring you a bounty of blessings, and may it bring researchers that much closer to finding the key to unlock the mystery of Alzheimer’s. I’m grateful for you and I thank you for continuing to follow The Long and Winding Road.

With gratitude,
Ann

 

 

 

 

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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

≈ 9 Comments

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.

 

 

 

 

 

 

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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 2014New 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

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The Long and Winding Road

Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

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