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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: caregiving

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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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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Tags

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

img_4896

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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Two Upcoming Events: Caregiving Conference and Lewy Body Dementia Webinar

22 Tuesday Nov 2016

Posted by Ann Napoletan in Caregivers, Events, Helpful Resources

≈ Leave a comment

Tags

caregiving, caregiving conference, caregiving event, caregiving webinar, lewy body dementia, lewy body webinar

 

The first annual Caregiving.com National Caregiving Conference is coming up in Chicago on December 2nd and 3rd. Learn more on the registration website or find out how you can attend virtually via webinar. If you’re a professional, the conference qualifies for CEU credits.

Friday includes optional intensive sessions on various topics, while the main conference will take place on Saturday. Agendas for both days can be found here. 

 

The Lewy Body Dementia Associationlbda and Lewy Body Dementia University are offering a series of free short videos and educational webinars for both LBD families and healthcare professionals. The next webinar is December 5th at 3pm ET. 

Attendees will have an opportunity to ask questions of Dr. Bradley Boeve, Professor of Neurology, Division of Behavioral Neurology and Center for Sleep Medicine, Department of Neurology, Mayo Clinic College of Medicine, Rochester, MN. Dr. Boeve will focus on LBD clinical care.

You can also visit the website to view recordings of the previous webinars featuring an update on the latest LBD research and a discussion on clinical trials.

 

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Marilyn, BA (before Alzheimer's)

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