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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: hospice

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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Caregiver PTSD: Fact or Fiction?

12 Thursday Sep 2013

Posted by Ann Napoletan in Caregivers, End of Life Signs, Grieving, Guilt and Regrets, HomeReach, Hospice, Kobacker House, Life After Caregiving, Mom, Ruminations, Saying Goodbye

≈ 73 Comments

Tags

alzheimers, caregiver ptsd, caregiver stress, death and dying, hospice

 

photo-41Post-traumatic stress disorder (PTSD):  An anxiety disorder that can occur after an individual has undergone extreme emotional trauma. It is most commonly associated with soldiers returning from war or victims of violent crime, but some experts now believe it can also befall caregivers. In fact, when I saw my doctor shortly after my mother died, it was something she mentioned.

Emotional Upheaval

In a way it sounds crazy; how could the impact of caregiving compare to war or violent crime? Obviously, they are very different, and I don’t think anyone is trying to imply they can be compared. But if you unravel what occurs in a caregiver’s life over many years, it’s reasonable to believe some form of PTSD is certainly within the realm of possibility – perhaps to varying degrees depending upon many factors.

Barry Jacobs is a clinical psychologist and author of The Emotional Survival Guide for Caregivers. Dr. Jacobs notes that many caregivers wrestle with uncontrollable disruptive, distressing thoughts months – and sometimes years – after a loved one has died.

It drives me nuts when well-meaning people say, “focus on the good memories.” (And for the record, I’m certain I’ve said the same thing to others a million times over my 47 years on this earth.) We’d all like to remember only the good times, and I imagine most of us constantly work toward that goal. But when you’ve watched someone suffer through years and years of an agonizing chronic illness, it’s tough to just flip it off like the light switch in the kitchen.

bearDr. Jacobs says, “Many people find themselves unable to stop thinking about the suffering they witnessed, which is so powerfully seared into their brains that they cannot push it away.”

Haunting Memories

My mom died almost 9 months ago, and try as I might there are certain moments that regularly haunt me. Some nights, when I lay down and close my eyes at bedtime, the images are more vivid than I can bear. I just can’t shake it, and the only way sleep will come is with television to distract my thoughts and melatonin to help me drift off.

Sometimes, the images pop into my head without warning – no apparent trigger – but there they are. It’s a vicious cycle; the mental pictures tend to bring forth more unpleasant memories, particularly of the last several weeks of her life. Those thoughts lead to unreasonable worry about things that I couldn’t control at the time and certainly can’t control now.

For instance, in her last few days before going into the hospice facility, I had to administer morphine. Of course I was doing so under the direction of hospice nurses, but it was horrible. She was in so much agony; the morphine was the only thing that brought her peace. I know that. Yet, I still struggle and wonder if there was something I should have done differently.

Defying Logic

An image that is burned into my psyche is that frail, almost unrecognizable woman who, for nine days, occupied the bed in room 16 at Kobacker House. Face sunken in and unresponsive; so thin that at one point, I touched the sheet, wondering what the pointy thing was under there – only to realize it was a hip bone jutting out of her tiny body. I can still see her like it was yesterday, and if that’s not painful enough it’s a visual that never fails evoke memories of the moment she took her last breath.

Something that has bothered me for the past nine months; was I holding her hand at the very moment she crossed over or had I let go? Now what a ridiculous thing to obsess over! Even if I knew the answer, I couldn’t change it, yet I have to consciously remind myself how illogical it is to allow that thought to take up residence in my head!

I don’t doubt some people will read this and wonder why in the world I would put myself through reliving such painful memories, but it’s not a choice. I’ll be honest; I wish I understood it. What I do know is that I watched my mother’s gradual decline for almost a decade; it’s nearly impossible to even remember her BA (before Alzheimer’s).

PTSD or Not, Caregiving Takes Its Toll

Symptoms of post-traumatic stress disorder include flashbacks, feelings of anxiety, dread, guilt, apathy, numbness, and depression, but as Dr. Jacobs points out, each of those issues are common in caregivers. It’s really up to a physician to determine whether what you’re experiencing might be a form of PTSD.

Do I think I have it? Probably not. The thoughts and images I’ve described aren’t constantly present; they come and go. But at the end of the day we have to realize that years of witnessing the unthinkable, being forced to make life’s most troubling decisions, never being able to completely settle our racing minds, constantly facing wildly fluctuating ups and downs – all while confronting life’s “normal” daily challenges… it takes a toll.

I remind caregivers all the time they must be gentle with themselves, but the truth is, it’s still something I have to work at everyday. It’s only since my mom’s passing that I’ve realized the need extends well into life after caregiving…

I would love to hear your thoughts on caregiver PTSD, as well as how you’ve dealt with the unwelcome images and memories that come calling at the most unexpected moments.

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Remembering…

02 Monday Sep 2013

Posted by Ann Napoletan in 4M, Advocacy and Awareness, Behaviors, Eason House, End of Life Signs, Expectations, Heartland, Hospice, Mom, Ruminations, Uncategorized, Weight Loss

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Tags

alzheimers, dementia, end of life signs, hospice

mom angelsIt’s nearly impossible to believe a year has passed since Mom began her sharp and unexpectedly rapid decline at the hand of Alzheimer’s.  It was about this time in 2012 that I realized scheduling a big vacation months in advance was a bad idea. At the time, though, things were “okay”… who knew what a difference one summer could make.

Praying for Comfort

There were fewer and fewer good days; she wasn’t eating – beginning to even turn her nose up at some of her favorite sweets – and was losing weight quickly. From that point on, her diet consisted primarily of Ensure until the end. Oh how excited we felt when she would eat a cracker or a couple of grapes; more than that and it was as though we’d hit the lottery, we were downright joyous!

photo-58In those weeks, it was indescribably painful to see her so distraught; screaming, hitting her head, and often inconsolable. In the few rare peaceful moments she had, she would stare at the ceiling, entranced, with a soft smile on her face and eyes almost sparkling. There’s not a doubt in my mind it was the very beginning of her transition. As upsetting as it was, seeing her at peace like that was also an incredible relief, but those moments of respite never lasted long.  All too soon, the terror she was obviously feeling would return.

Time For Hospice?

Finally, the time came where I knew I needed to make a decision. I called hospice to have them come out and do an assessment; unfortunately, we had a mind blowing, horrific experience with the intake nurse. I ended up asking her to leave before the process had been completed. On Monday, I called the office and told them to destroy the paperwork – I had changed my mind (there’s more to the story…).

It was the beginning of the final dizzying, nausea-inducing rollercoaster ride that lasted for the next 3 or so months. I thought I had seen it all, but I hadn’t seen anything yet…

Hopelessly Unpredictable Progression

So crazy to think earlier that same year I truly thought that she could easily live another 10 years or more. Physically, she was strong. But things can – and often do – change very rapidly where this disease is concerned.

Mom wasn’t done fighting, though. While she never bounced back to where she had been, she did turn things around one more time – for a short spell – before that final downward spiral. I went from being certain she only had weeks left to believing she might actually rebound; however, that was not the case. Amazing how your mind plays games, but with this disease, “rebound” is a very relative term…

_____

If you would like to help us raise awareness, research dollars, and funds to help families on this journey right now, visit Marilyn’s Mighty Memory Makers’ page to join the team or make a monetary donation. In just two weeks, we’ll be walking to #ENDALZ.

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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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