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“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 1 Excerpt

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseThis series of posts about You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease began with the forward to the book and an explanation of why I wrote this book and why you should read it.

This post will include an excerpt from chapter 1, which thorough covers the first step in the journey through dementias and Alzheimer’s Disease, which is mild cognitive impairment (MCI).

The title of the book, as well each chapter title, may, depending on your age and musical tastes (mine run toward eclectic, alternative, and indie) sound familiar.

That was intentional on my part for two reasons.

One reason is because music is a universal language, and music can often be comforting to our loved ones with dementias and Alzheimer’s Disease.

The other reason – one that caregivers do continually – was to look at something familiar in an entirely different context that broadens our relationship to and with it. If you’re familiar with these lines (a list of the song titles and artists for each song line/chapter title is included at the end of the book), you will never listen to these songs the same way again after reading this book.

And that’s the point: life is never the same after our loved ones and we have gone through the journey of dementias and Alzheimer’s Disease. Everything changes, including us.

Most of the changes are personal, internal, and deep. They should be positive in terms of growth in love, compassion, empathy, care, concern, gentleness, kindness, patience, and self-control.

But they will also reflect a greater recognition and understanding of a hostile world that needs change (we have faith that change will come) and a greater awareness – and peace with – our own frailty and mortality as mere humans who only dance on this earth for a short while.

And, on the other side of the journey, we often find ourselves mostly alone, except for a few along the way that we know or befriend who have or are sharing the same journey, in the changes to who we are and how we view the world and how we view life.

That’s not a criticism to those who haven’t been through this journey – and we pray they don’t have to go through it, but we know the odds are not in their favor – but simply a statement of fact.

It’s sad at times and painful at times, but it’s the reality that, for now, we have to live with and move forward in spite of.

going gentle into that good night divider

Excerpt “Chapter 1: ‘I Don’t Remember, I Don’t Recall'”

“Because it affects short-term memory, mild cognitive impairment affects the recent past and the present.

What does this look like in practical terms?

  1. Repeating things in conversations, stories, and writing

    This manifests itself in telling the same things over and over, and with each retelling, it’s as though it’s the first time telling it. It is very similar to the effect of a scratch in an old vinyl record, where that point in the track gets replayed over and over until someone goes over and physically lifts the needle up and moves it beyond the scratch. However, with our loved ones, it’s rarely that easy or that simple.

  1. Frequently losing and misplacing things

    We all, from time to time, pick things up, get derailed in going from point A to point B, laying the things down somewhere in between, and then having no idea where we put them when we finally get to point B. However, with mild cognitive impairment, this becomes normal.”

     

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Forward to the Book

You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer's DiseaseAs I am researching and writing other posts for this blog – the second post in the series on “Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease” is almost complete – I am also going to be including short excerpts from each chapter in the book, You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

This book is the only one of its kind. It is written by someone, who like you are or will most likely will be at some point in your life, who has walked step-by-step through the caregiving journey with a loved one.

For me, that person was my mom.

I knew practically nothing about dementias and Alzheimer’s Disease when we started the journey.

But perhaps my mom chose me as her medical, legal, and financial power of attorney, not just because she trusted me – even when she couldn’t remember that she did – and not because I was always, as an adult, in continual contact with my dad and her (and daily with Mama, after Daddy died) and knew what was going on, what they were dealing with or needed, and did my best to take care of those needs.

I think she also chose me because she knew that between my love and protectiveness of my parents, my intense interest in biology and neurology, and the profession I consciously choose not to pursue in spite of a strong desire to do so – genetics – because I could foresee the ethical and moral issues that I was not and would not be willing to compromise on, that I had the advanced research skills and very good scientific background to be the best proactive and involved advocate for her.

Since Mama’s death in August of 2012, I have been actively involved in sharing the hands-on, day-to-day lessons – and information – we learned on our our journey through dementias and Alzheimer’s Disease.

While each type of dementia is unique (which is why I have a “Layperson’s Guide” series on the common types of dementia as well as a guide to the rare types of dementia on this blog), the journey through these diseases is the same.

As I expanded my involvement in education and sharing information to participating in and leading support groups for caregivers of loved ones with dementias and Alzheimer’s Disease, I became aware of the need for You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

The same questions about the steps in the journey through dementias and Alzheimer’s Disease face us and our loved ones. If not now, somewhere in the future.

Not a single person on this planet, with the burgeoning rate of dementias (including lifestyle dementias), will escape having to deal with dementia of some type personally. 

The questions are the same. What is this? What does it mean? Is it normal? Where is my loved one in the journey? How do I handle it? How can I help my loved one handle? What can I expect next? How will it end?

You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease answers all of those questions with comprehensive, usable, and practical information you won’t find anywhere else.

I know because I looked for it when my mom and I began our journey. It wasn’t there. But with this book, it is now. 

That’s why I’m going to include the whole forward of the book below and why I will excerpt each of the chapters so that you get an inside look at why this book will be an invaluable resource for everyone involved in the journey through dementias and Alzheimer’s Disease.

pink-horizontal-line-going-gentle-into-that-good-night

“Forward” – You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease

“This book takes a comprehensive look at each of the steps in the journey through dementias and Alzheimer’s Disease. I’ve seen, in my own experience (I went, side-by-side, through the journey of vascular dementia, Lewy Body dementia, and Alzheimer’s Disease with my mom all the way through the end of her life) and in supporting, educating, and counseling others who are on the journey, that there is a basic lack of comprehension about the big picture of how these neurological diseases progress.

My purpose here is to lay that big picture out in concrete and discrete steps that follow this pattern for each step:

  1. What is happening
  2. What it looks like
  3. How to address it

I cannot emphasis enough that a timely intervention that consists of geriatric psychiatric hospitalization where an accurate diagnosis can be made and a medication regimen to address cognition, psychological issues, moods, behaviors, and psychosis started (it will be tweaked along the way), along with our love and advocacy, can minimize and stabilize a lot of these and increase the quality of our loved one’s lives.

This should be done sooner rather than later. It won’t cure dementias and Alzheimer’s Disease. There is no cure for these neurological diseases. They are always fatal.

However, the proper medication regimen can increase the quality of life for our loved ones in a way that gives them an opportunity to live life as fully as they’re able, to enjoy it as much as they’re able, and to enjoy their relationships with those they love, including us. The goal is to stabilize, not marginalize or invisibalize (being almost comatose is not quality of life), so it’s our job to find the right medical care team to make this happen for our loved ones.

Waiting only hurts them and endangers their lives. And it could end their lives prematurely. None of us want that. So, I urge you to get psychiatric help and medication on board as soon as possible!

The tone of this book is conversational. As I’m writing it, I’m imagining each of you reading it sitting beside me or across from me, as we share a cup of coffee or a glass of tea, talking as friends.

Because we are, even though you and I have never met in person.

I know intimately the struggles you’re dealing with now, as well as the struggles your loved ones are dealing with. I know the sense of helplessness you and they wrestle with. I know the deep, deep desire to fix it, to make it better, to wave a magic wand and make it disappear.

I know the moments of great sorrow and the moments of great joy you and your loved ones share. I also know the great love you have for each other.

And I know the battles you are going to face after this journey is over. It changes you forever. But the lessons you’ll learn are the ones that you will share with others, as I’m sharing mine with you. To not pay them forward is to waste the pain.

If you have not yet read my practical and loving caregiving book, Going Gentle Into That Good Night, please be sure to purchase that as well.

For regular updates and new information on dementias and Alzheimer’s Disease, please subscribe to this blog.

And always, if you have any questions that I can help you with or you just need someone to listen, please email me. I will do the very best I can do to provide you with answers, resources, empathy, and encouragement.”

Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease – Part 1

loving caregivingThere are everyday practical needs that almost no one ever talks about in providing care and making life easier for both us as caregivers and the loved ones with dementias and Alzheimer’s Disease that we care for.

This next series of posts will discuss these needs, how to address them, and give resources that are invaluable to the care of our loved ones.

One of the needs that arises as we walk through the journey of dementias and Alzheimer’s Disease with our loved ones is keeping clothing clean during eating or drinking. The progressive neurological damage of these diseases affects not only spatial vision, but also the nervous system.

It is not unusual, especially as these diseases progress, for our loved ones to “miss their mouths” when eating and drinking and to develop tremors, both of which can lead to spills of food and drinks on their clothing.

adult bib going gentle into that good nightA great aid to help keep clothing clean is an adult clothing protector.

These are primarily known as adult bibs. However, there is a dignity aspect to caregiving for our loved ones with dementias and Alzheimer’s Disease that is compromised with terms that are traditionally used in infant care. So I made it point with my own mom to not use the infant-related terms, but to use adult terms to refer to these helps and aids.

Therefore, throughout this post, I’ll give you the dignity term I used and ensure that you have the term used by suppliers of these items.

There are many different types of adult clothing protectors to choose from, but the most cost-effective (generally less than $6/clothing protector) and functional type is made with terry cloth and velcros around the neck in the back.

These adult clothing protectors are durable, machine-washable, and are easy to get on and off. My suggestion would be to purchase at least eight of them, so that you can also have a couple of clean ones on hand even when you are doing laundry.

A resource that has good quality and good prices on adult clothing protectors is Personal Touch Health Care Apparel.

Another issue that will, at some point, arise with our loved ones with dementias and Alzheimer’s Disease is incontinence (urinary, bowel, or both). Therefore, we’ll need to have an adequate stock of adult underwear (adult diapers) on hand at all times.

Not all adult underwear is created equal.

There are two types of adult underwear: tabbed and pull-up. The tabbed type of adult underwear is the preferred type for our loved ones who are bed-bound, because it makes changing the underwear easier.

If our loved ones with dementias and Alzheimer’s Disease are mobile to any degree, then the pull-up adult underwear is the best option.

Quality matters. Most of the brands of adult underwear available in stores like Walmart, Sam’s Club, Target, and Walgreens are not very high quality. They tear easily, usually don’t fit well, and often are not strong enough to handle any more than occasional incontinence problems.

Price matters. Buying adult underwear in bulk is the preferred method, since once our loved ones with dementias and Alzheimer’s Disease become incontinent, changes in underwear throughout the day (and, sometimes, at night) become frequent.

The brick-and-mortar retailers sell adult underwear in small quantities, so the cost of stocking up becomes financially prohibitive.

For quality, quantity, and price then, online companies are the best option for buying adult underwear for our loved ones with dementias and Alzheimer’s Disease.

Northshore Care Supply is the online company that I used to buy adult underwear from. They were excellent in price, quality, quantity, and short delivery times.

adult underwear going gentle into that good nightThe particular brand of adult underwear that worked best for us was Tranquility® Premium Pull-Ons (Overnight style). Because my mom began to experience urinary urge incontinence in her late 70’s and because she was on a daily dose of diuretics for congestive heart failure (which I had to increase temporarily when she had a 5-or-more pound weight gain in 24 hours, which meant fluid was collecting around her heart), this style and brand of adult underwear met all her needs.

It was not bulky and it was very comfortable for my mom to wear and neither of us had any complaints about them at all.

Other things that most likely will be needed in providing care for incontinence with our loved ones with dementias and Alzheimer’s Disease include disposal gloves, flushable cleansing wipes, rash cream, and protective pads for beds and cloth upholstery.

vinyl disposal glovesDisposable gloves should always be used when coming into contact with human waste. This helps protect both us as caregivers and our loved ones with dementias and Alzheimer’s Disease (I recommend keeping a small, plastic-lined covered trash can in the bathroom and emptying the trash can after each clean-up. This eliminates the possibility of contamination and keeps the bathroom clean and odor-free.) 

A 100-count box of disposal gloves (I recommend vinyl because they are both durable and the least expensive) is about the same price no matter where you purchase it, so there are plenty of options for buying them. However, I would recommend that you always have at least two boxes on hand.

flushable cleansing wipes going gentle into that good night

Flushable cleansing wipes can be purchased in bulk as well. Look for a brand that is for sensitive skin and that contains aloe. NorthShore Care Supply carries the Cottonelle brand in bulk and that is where I purchased mine. However, you can also check eBay (Amazon tends to be more expensive) for good pricing on bulk purchases as well.

At times, incontinence issues with our loved ones with dementias and Alzheimer’s Disease will lead to the development of rashes. This should be rare, because we as caregivers are responsible for keeping our loved ones changed and clean as adult rash creamoften as is necessary. However, because we’re dealing with aging skin and sensitive skin in our loved ones, rashes may develop from time to time.

The best rash product for adults that I found is Balmex Adult Care Rash Cream. It can be purchased either online or at stores like Walmart or Target.

The last item we’ll need to help our loved ones with dementias and Alzheimer’s Disease when they begin to experience incontinence is protective padding.

disposal-paddingIf our loved ones are bed-bound and immobile, then disposal protective pads for changing underwear and to protect bedding are the best option. I recommend a large size and the highest absorbency available, since these will be used overnight as well.

NorthShore Care Supply offers a lot of options for disposal protective pads, and they sell in bulk at very reasonable prices, so they are my recommendation for purchasing these.

If our loved ones with dementias and Alzheimer’s Disease, however, are mobile and dealing with incontinence, I suggest purchasing washable protective pads.

Although they cost more, because they are washable, they end up being a cost-efficient option. They are also more absorbent and they can be put on any surface (leather, cloth, bedding, etc.) to fully protect the surface.

washable protective pad going gentle into that good nightMy recommendation is to buy a medium-to-large size and to buy enough to cover surfaces that our loved ones will be sitting on (don’t forget vehicles) so that they don’t have to be moved each time our loved ones move.

In the next post, we’ll look at grooming and bathing assistance items that are helpful in caring for our loved ones with dementias and Alzheimer’s Disease.

Gratitude for Being Able to Care for Our Loved Ones with Dementias and Alzheimer’s Disease

gratitude care dementia Alzheimer's Disease loveChoosing to be the caregiver for our loved ones with dementias and Alzheimer’s Disease is a conscious, deliberate, and willing choice of sacrifice, selflessness, and, ultimately, love.

However, in the big scheme of things, this choice, this action on our parts is our acknowledgement that we are fulfilling the circle of life for parents – and, in some cases, grandparents – who made conscious, deliberate, and willing choices to make sacrifices in their own lives, to act selflessly, to love unconditionally when they brought us into their lives.

Like many of our loved ones become, if they live long enough with dementias and Alzheimer’s Disease, we were totally helpless, utterly dependent, and needed 24/7 care and attention, as well as love, soothing, and comfort.

There was no reticence, no holding back, no wavering in the commitment our loved ones made to us in those needy, weepy, sometimes trying, sometimes scary, sometimes exhausting beginning days, weeks, months, and years of our lives. 

thankfulness for being able to care for our loved onesInstead there was gratitude.

The sacrifices – and they made many, some deep and hard and of which we are totally unaware, sacrifices – along the way for us were worth whatever they were giving up.

The selflessness involved was never an issue because they loved us that much. It was always less about them than it was about us.

And that love was always unconditional. Even when we tried their patience without end. Even when we got into one thing after another, sometimes making little messes and sometimes making huge messes. Even when we unknowingly embarrassed them with unapologetic frequency in front of both strangers and friends. Even when we were, at best, a handful, and, at worst, out of control.

At the end of each day, we knew we were loved and that no matter what else happened, we always had a safe place in the world to count on, to come home to, to be comforted in.

Did they get tired? Yes.

Did they get frustrated? Yes.

Did they get angry? Yes.

Did they sometimes just want to throw their hands up in the air and say “Enough already?” You bet.

Did they handle everything with grace and perfection? Absolutely not.

Did they try? Absolutely.

Did they quit us, even when we had ripped the sleep out of their nights, the peace out of their formerly-tranquil lives, and the color out of their hair? No.

Why?

Because gratitude trumped all those temporary setbacks and disruptions. They saw us as gifts from God and they saw being able to love and care for us as an opportunity to thank God for the gifts He had given them.

And herein lies the reasons we should be thankful for the opportunity to take loving care of our loved ones with dementias and Alzheimer’s Disease.

Our loved ones have been and are gifts given to us by God. How best to show our gratitude to them and to our Creator than to love and care for our loved ones with dementias and Alzheimer’s Disease, as they did for us, when they need us most and depend on us most?

Caregiving is not easy. It is hard, demanding, and often thankless work that requires an unshakeable commitment to persevere in spite of obstacles, in spite of hurts, in spite of the numerous losses it will bring to our own lives.

Caregiving, then, is a gift that each of us has the opportunity and choice to accept or reject.

If we reject that gift, then we are rejecting an incredible opportunity to fully appreciate and to be eternally grateful for the sacrifices, the selflessness, the unconditional love that our loved ones and God Himself, through His Son, made, showed, and gave us, not because we asked for them, but simply because we mattered that much to them.

If we accept that gift, on the other hand, we are the beneficiaries in so many ways that far exceed the challenges we are also accepting.

With this gift, we become kinder people, gentler people, more empathetic people, more understanding people, more patient people, more long-suffering people, more merciful people, more self-controlled people, more humble people, and more loving people.

The gift of caregiving for our loved ones with dementias and Alzheimer’s Diseases also gives us the blessings of becoming more courageous, more comforting, more forgiving, stronger, more compassionate, and more sympathetic.

And finally the gift of caregiving increases our faith and our faithfulness: faithfulness to the commitments, physical and spiritual, that we make in our lives; and faith in God and His word and His promises that a time is coming when all things, including our loved ones with dementias and Alzheimer’s Disease as well as those of us who care for them with our limitations, our faults, our flaws, our mistakes, and our missteps, will be completely healed.

There is much to be grateful for as we love and care for our loved ones with dementias and Alzheimer’s Disease. I have not even scratched the surface of covering all the areas where we experience gratitude in this journey with our loved ones.

But my hope with this post is that each of us will think about and find the gratitude in our personal experiences that overshadows the pain, the sorrow, the losses, which temporarily sting and grieve us, but in the balance transform us in more mature and more thankful iterations of ourselves.

 

 

The Layperson’s Guide to Hospice Care for Our Loved Ones with Dementias and Alzheimer’s Disease

hospice care for our loved ones with dementias and alzheimer's diseaseThis is the last installment in a series that Going Gentle Into That Good Night has presented to discuss, in clear, practical, and informative language, the on-going health care options in the home that are available for our loved ones with dementias and Alzheimer’s Disease.

In the first post, “The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed the home health care option.

In the second post, “The Layperson’s Guide to Palliative Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed the relatively-unknown and highly-underutilized option of palliative care, which all caregivers at home should have in place for their loved ones in the long journey between acute health crises and death.

In this post, we will discuss the hospice care option. I will talk about the requirements to be admitted to hospice care and what it means for our loved ones with dementias and Alzheimer’s Disease in terms of the kind of care they can receive.

I will also discuss how hospice care works in a home setting (there is a hospital hospice option, but we will not discuss that in this post which is geared toward caregiving for our loved ones at home).

I will also walk you through the end-of-life process and how hospice is designed to support our loved ones and provide assistance to caregivers in the immediate aftermath of the death of our loved ones with dementias and Alzheimer’s Disease.

And, finally, I will frankly and honestly talk about the good, the bad, and the ugly that the hospice experience can be and I will provide you guidance on how to handle that at a time when mentally and emotionally this can be the toughest decision we make in caring for our loved ones with dementias and Alzheimer’s Disease.

Hospice care, in general, is available to our loved ones only when they are in the terminal (six months or less until death) stage of an illness.

The difference between hospice care and home health or palliative care is that while home health and palliative care are curative (treatment to stabilize and/or improve to extend life), hospice care is comfort (treatment to provide physical comfort while the terminal disease takes its natural course to death without intervention).

The requirements for admission to hospice care under a dementias/Alzheimer’s Disease diagnosis are essentially that our loved ones have already knocked on death’s door and the door is slightly ajar:

Must exhibit two of the following:

  • Ability to speak is limited to 6 words or fewer
  • Ambulatory ability is lost
  • Cannot sit up without assistance
  • Loss of ability to smile
  • Cannot hold up head

Must exhibit all of the following:

  • Inability to ambulate independently
  • Inability to dress unassisted
  • Inability to bathe properly
  • Incontinence of urine and stool
  • Inability to speak or communicate meaningfully

Failure to thrive in the following areas:

Clinical:

  • Progression of disease documented by symptoms or test results
  • Decline in Karnofsky Performance Score
  • Weight loss supported by decreasing albumin or cholesterol

Dependence in two or more of the following:

  • Feeding
  • Ambulation
  • Continence
  • Transfers
  • Bathing and dressing
  • Dysphagia (difficulty swallowing) leading to inadequate nutritional intake or recurrent aspiration
  • Increasing emergency visits, hospitalizations, or physician follow-ups related to their primary medical diagnosis
  • A score of 6 or 7 in the Functional Assessment Staging Test (FAST) for dementia
  • Progressive stage 3-4 pressure ulcers in spite of care

Because of the prevalence of comorbid diseases – such as heart disease, unmanageable high blood pressure/strokes, diabetes, and organ failure (kidney failure is quite common in these three diseases because they affect the kidneys directly either in the disease itself or in the treatment of the disease) – that exist, especially in our elderly loved ones, alongside of dementias and Alzheimer’s Disease, it is very likely that admission to hospice care will be for one of the comorbid diseases instead of because of dementias and Alzheimer’s Disease.

In my mom’s case, we transitioned to hospice care under heart disease when Mama was having chest pain regularly. The palliative care nurse suggested that we go to the emergency room one morning when the pain was particularly acute and Mama said “No,” and I backed her up (Mama and I had, a few months earlier, according to her wishes, agreed on no more hospitals). Mama had the major heart attack that would, 12 days later, result in her death the following night of the day after she was admitted to hospice.

When our loved ones with dementias and Alzheimer’s Disease are admitted to hospice care at home, several things are supposed to happen (I will talk later about researching and deciding on hospice care before you need it since you do not have to use the hospice care of the care agency providing home health and palliative care).

hospice care kit going gentle into that good nightThe first thing is that a comfort kit is overnighted to the home for administration when needed (and if a hospice nurse is not immediately available to provide the care). Included in the comfort kit are basics like liquid morphine (hospice will provide more if needed), mouth swabs (keeps saliva from collecting mouth and throat),  and Atropine drops or Levsin (minimizes wet respiration).

Hospice also has a two-week supply of all medications that our loved ones with dementias and Alzheimer’s Disease are taking specifically for the disease they are admitted under overnighted to the home.

A care team consisting of nurses, a social worker, a chaplain, volunteers to sit with our loved ones if we need to get groceries, and certified nurse assistants (CNAs) to help with daily hygiene care is also put in place to assist in supporting our loved ones and their families along the journey to death.

Our loved ones and we can chose which of these non-medical care team members to utilize. In Mama’s case, for example, we had a spiritual inner circle of longtime friends-who-were-family who provided, along with God, our sole spiritual support. We also took care of daily hygiene on our own.

Our experience was less than optimal in the other areas (including nursing until a home health nurse happened to fill in for the hospice nurse the last few days of Mama’s life).

In fact, our experience was so bad that I had decided to switch to another hospice care agency two days before Mama went into her death sleep (for my readers in the Tri-Cities, Tennessee, area, please email me at goinggentleintothatgoodnight@gmail.com for details on the various hospice providers in the area and which one I was going to change to on the recommendation of home health nurses I trusted).

Nursing visits should be frequent, but will increase to daily as death for our loved ones with dementias and Alzheimer’s Disease draws closer.

After death, the hospice nurse will be our first contact. They will notify the funeral home, clean up and dress (you can choose to assist or not in this process – I assisted with Mama because it was a way that I could show her respect and maintain her dignity) our loved ones, and take care of the paperwork for the death certificate.

After the funeral home picks up our loved ones, the hospice nurse will, with our assistance, document, dispose of and destroy all the medications provided by hospice, including any remaining comfort care medications.

comfort-hospice-going-gentle-into-that-good-nightLogic would seem to indicate that hospice care team members are sensitive, gentle, and supportive. However, in many cases, none of those things are true.

I did my homework on hospices before Mama needed hospice care. I asked friends of mine who were nurses involved in elderly care for their recommendations since they dealt with all the hospice agencies in the area.

However, one of the caveats I found is that hospice agencies can deal differently with medical professionals (i.e., better) than with family members of loved ones who are in need of hospice.

When I talked to the first hospice agency that had been recommended to me, the first words out of the director’s mouth, before I’d said much more than my name, were “We’re not a babysitting service!”

The nastiness in her tone and what she said took me totally aback. Even looking into hospice care as an option is emotionally and mentally tough because it means we realize that time for our loved ones with dementias and Alzheimer’s Disease is short and finite and we’ve accepted the reality of rapidly-approaching death.

Even though there’s a rational, logical, objective component in that realization, the emotional and mental component of wrapping our heads around it isn’t so cut and dry, and a little empathy, compassion, and gentleness in the recognition by a hospice care agency is not unreasonable to expect.

The reason is that the first contact we as caregivers and advocates for our loved ones make to a hospice care agency leaves an impression on us as to the kind of care that agency will provide for our loved ones. If they treat us badly, then it’s safe to assume that is the quality of care that our loved ones with dementias and Alzheimer’s Disease will receive.

I crossed the first hospice care agency off my list simply because of those first words out of the director’s mouth to me.

The hospice care agency that Mama and I ended up with was not the one I wanted because I’d had a similar bad first contact with its director. However, the hospice care unit was in the same provider that we had received home health care and were receiving palliative care from and the hospice care director showed up with the palliative care nurse on the day that Mama was having acute chest pains.

The director of hospice care said it was time to admit Mama to hospice for heart disease and I knew at that point that I didn’t have the luxury of time to get another hospice care agency lined up and on board, so I did what we needed to do for Mama, despite my strongly negative impression from my first meeting with the hospice care director.

For the first eight days Mama was under hospice care, she and I were pretty much on our own. The only real support we got was through a couple of phone calls to the 24/7 medical line.

It was not until a home health care nurse (I knew he was a home health care nurse and he confirmed it when I asked him – the night and day difference in care for Mama and support for me was that obvious) from the agency filled in for the hospice nurse who was finally supposed to visit Mama showed up four days before Mama died that I had any confidence that I had made the right decision by switching Mama to hospice care.

I share this personal experience because it’s not as unusual as you might think. I’ve heard similar stories from other people with other hospice care agencies in other parts of the United States and the world. 

That’s why you need to know that, if our loved ones with dementias and Alzheimer’s Disease have a longer time frame to death than my mom had, you have the ability and the choice to fire a hospice agency that is not working, whatever the reason(s).

Hospice care is designed to be comfort care – and that includes good support for caregivers and the family – and if that is not the outcome for our loved ones and us, then that is unacceptable and we have the freedom to switch to an agency who does provide what a hospice care agency is supposed to.

Eliminate Behavioral and Verbal Hand Grenades in Our Relationships with Our Loved Ones with Dementias and Alzheimer’s Disease – Part 1

verbal and behavioral hand grenades relationships dementias Alzheimer's DiseaseCommunication – verbal and behavioral – is the cornerstone of human relationships. It turns out, as all of us have no doubt discovered along the way, that we humans aren’t all that good at successfully communicating with each other all the time.

Admittedly, some of us are better – but not always – at communicating well and consistently with other humans than others of us are.

Our propensity toward communication difficulties leads to a lot of problems in the normal course of our relationships with others. Misunderstandings develop. Feelings get hurt. Relationships are ripped apart irreparably, at least for this lifetime.

However, for our loved ones with dementias and Alzheimer’s Disease, where executive function, cognition, and understanding are compromised by neurological deterioration, these communication difficulties are even more devastating and can often lead to extreme agitation, volcanic emotional outbursts, and inappropriate behavioral manifestations.

Psychoanalyst Trevor Mumby, who has spent his career looking for ways to communicate more effectively with those who have dementias and Alzheimer’s Disease, has identified twelve areas of communication that are verbal and behavior hand grenades that can create emotional havoc with our loved ones with dementias and Alzheimer’s Disease.

I submit that if we eliminated these communication hand grenades in all our relationships, we’d be taking a huge step forward in better communicating with other human beings.

In this post, we’ll look at the first six verbal and behavioral hand grenades of communication that we need to eliminate, and in the next post, we’ll look at the last six.

hand grenade dementia Alzheimer's DiseaseBeing opinionated.

Nothing gets emotional upheaval going in all of us like someone who is overbearing and knows everything about everything and will not stop pushing their opinions and their agendas over and over and over ad nauseum until everyone agrees (or just disappears by folding up within themselves and shutting down).

For our loved ones with dementias and Alzheimer’s Disease, this communication hand grenade will evoke strong negative emotional and behavioral responses, ranging anywhere from being emotionally inconsolable to being physically violent.

hand grenade dementia Alzheimer's DiseaseInterrupting.

Even in normal communication, constantly being interrupted or cut off while trying to express something completely is aggravating.

I tend to take longer, verbally, to express myself because I’m not a natural ad hoc speaker and it’s out of my realm of capability and temperament to think out loud, process and talk concurrently, and be engaged in unedited conversation.

I find myself frequently on the receiving end of being interrupted because I pause a lot to try to find the right word, tone, meaning before I say it. My response to interrupting is to stop talking and avoid verbal communication with people I know will interrupt me.

In this area, I have a strong affinity with and empathy for our loved ones with dementias and Alzheimer’s Disease who, because of often-extensive neurological damage to the speech and hearing pathways in the brain, struggle to understand what is being said and how to respond to it (I discuss understanding and successfully navigating communication difficulties comprehensively in Chapter 3 of my book, You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease).

As a result, exaggerated pauses in speaking occur and it’s almost second-nature to interrupt and fill in the missing words and/or thoughts we think our loved ones are trying to say. And this can create extreme agitation and emotional upset because we are likely wrong in what we conclude they are trying to communicate and because we’re both being disrespectful to and taking away independence from our loved ones with dementias and Alzheimer’s Disease.

hand grenade dementia Alzheimer's DiseaseProvoking.

This hand grenade can be both verbal and behavioral. Some people are unaware that they are provocating, while other people revel in it. My daddy, who didn’t like it any more than I do, used to call it “getting a rise out of someone.”

Verbal provocation is a conscious hand grenade. It is characterized by insistent, persistent, and increasingly abusive language toward someone else with the intended results being anger and fighting. Yep, there are actually people – and we all know them, unfortunately – who really enjoy doing this.

Behavioral provocation is usually an unconscious or unknown hand grenade. We all have things that we do and habits that we have that get on someone else’s last nerve, but oftentimes we have no idea that we’re provoking them in the process.

For our loved ones with dementias and Alzheimer’s Disease, verbal and behavioral provocation can be a communication powder keg. We need to remember that the neurological damage in these diseases affects perception, reasoning, and understanding profoundly. We also need to remember that having dementias and Alzheimer’s Disease increases the fearfulness of our loved ones.

Therefore, verbal provocation, which can be threatening and scary to those of us who do not have dementias and Alzheimer’s Disease, can create terror in our loved ones who do. And we all know that fear generates that adrenaline rush known as the “fight-or-flight” response.

Whichever of these gets triggered in our loved ones will be exaggerated. Evidence of this response can include frequent and uncontrollable agitation, constant pacing, increasing wandering with the intent of escape (outdoors), or fighting (hitting, biting, etc.) when they are provoked.

Behavioral provocation will most likely evoke anger and impatience in our loved ones with dementias and Alzheimer’s Disease. This can escalate to physical violence in an attempt to stop the provoking behavior.

hand grenade dementia Alzheimer's DiseaseContradicting.

Another hand grenade is the habit of disagreeing with, arguing with, and contradicting everything the other person says. Part of what is behind this verbal and behavioral hand grenade is the need to be right all the time (insecurity and/or inflated ego are at work).

We all know people like this and I personally steer clear of them as much as I’m able. When I have to be around them, I get quiet and stay quiet and try to escape them as quickly as possible.

However, the hand grenade of contradiction is very damaging to our relationships with our loved ones with dementias and Alzheimer’s Disease. Remember, these diseases, by their very nature, take sure knowledge away from our loved ones. It causes them to be tentative about everything because they don’t remember what they don’t remember.

Contradicting them on everything only adds to the tentativeness, the hesitation, the confusion and will eventually cause our loved ones to shut down and stop communicating altogether (you’ll note that this is not all that different than what I think most of us who don’t have dementias and Alzheimer’s Disease do only when we are around people who contradict us all the time) with everyone.

hand grenade dementia Alzheimer's DiseaseExpecting gratitude.

Let’s face it. Most of life is a pretty thankless task. However, part of human relationships is doing what you are able for others when you are able because it’s the right thing to do.

If we expect gratitude all the time, then the motive behind what we do is selfish and self-centered: we want recognition, we want praise, we want our egos stroked. In essence, our actions and words are all about us and never about those for whom we do or give them.

For people who expect the limelight all the time for all they do and say, we find that they will stop doing for and saying things to the people who don’t feed their egos with lavish praise and fawning gratitude. They basically just cut those people out of their lives.

Not expressing gratitude consistently among our loved ones with dementias and Alzheimer’s Disease is part of the neurological disease process. Remember that the brain is where the concept of thankfulness and gratitude are formed. As the brain deteriorates, concepts and ideas, which are high-level executive functioning, begin to disappear to one degree or another.

If we are expecting gratitude all the time, will we cut our loved ones out of our lives because they’re not meeting our expectations? Sad to say, this does happen. But shame on us if this is our motivation and our response.

hand grenade dementia Alzheimer's DiseaseTalking loudly.

Somehow all of us humans are innately wired to believe that if we just say something in a louder voice, it will be understood better by the person or people we are talking to.

Because my mom had a severe hearing loss most of her life, I saw this up close and personally with people who didn’t know her. Early in our childhoods, Mama explained that when people were talking to her she read their lips and that slowing down just a bit and enunciation, not volume, was the key to her being able to understand what was being said if she couldn’t hear it.

Even before her journey with dementias and Alzheimer’s Disease, she didn’t like to be around people who always talked loudly or people who talked loudly to her as a way of communicating with her.

And I’ve never been able to handle loud talkers either. It literally hurts my ears and I physically need to get away as quickly as I’m able when I’m around people who normally talk in a loud voice.

The same is true for our loved ones with dementias and Alzheimer’s Disease (I’ve often wondered how much the double whammy was for Mama to have both a profound hearing loss and vascular dementia, Lewy Body dementia, and Alzheimer’s Disease – I really can’t imagine).

Volume in speech will not help them understand more or better what our loved ones have already lost in understanding and comprehension because of dementias and Alzheimer’s Disease. What it is most likely to do instead is make them fearful because they know the noise is loud, but they don’t know why.

As we talked about before, fear can produce intense agitation, continuous pacing, frequent wandering to escape, and, at its worst, physical violence in our loved ones with dementias and Alzheimer’s Disease.

These are the first six verbal and behavioral hand grenades that we need to eliminate in our relationships with our loved ones with dementias and Alzheimer’s Disease. The reality, though, is that we need to eliminate them in all our human relationships, so everybody on the planet could benefit from reading this series.

In the next post, we’ll discuss the last six verbal and behavioral hand grenades we need to eliminate.

 

 

Verbal Abuse is Not Loving Caregiving for Loved Ones with Dementias and Alzheimer’s Disease

This article from Science Daily about verbal abuse and its negative influence on the quality of life among the elderly really struck a nerve in me. This is one of my soapbox issues about the care, the honor, the respect – and the increasingly appalling lack of it – we as a society give to the elderly among us.

The old adage “sticks and stones may break my bones, but words will never hurt me” is the one of the most pervasive lies that’s been perpetrated since it was first said in an old English nursery rhyme. The reality is that physical pain heals to one degree or another, but the pain of verbal abuse never heals. Words, once spoken, remain with us until we draw our last breaths.

Just because our loved ones may be experiencing dementias, Alzheimer’s Disease, or other age-related illnesses that impair them neurologically and/or physically does not mean they are oblivious or immune to the tone, the quality, and the veracity of our words.

That is why I wrote “Is It Ever Okay To Be Dishonest With Our Loved Ones Suffering With Dementias and Alzheimer’s Disease?” condemning ever being dishonest with our loved ones, a practice often advised when dealing with our loved ones with dementias and Alzheimer’s Disease.

I caught a lot of flak for that post and got a lot of excuses and justifications (just an FYI: if you have to make excuses and justify behavior, then it’s a good sign that it’s wrong and you know it’s wrong and you are consciously choosing to do what is wrong anyway) as to why being dishonest was okay.

going gentle into that good night verbal abuse elderly unacceptable behaviorIt did not and does not change my position and the reality that being dishonest is not okay ever. Dishonesty is a moral failing at its core (we should strive never to be dishonest with anyone about anything), but it is an equally unacceptable form of verbal abuse for our loved ones suffering with dementias and Alzheimer’s Disease.

Dishonesty is just as much verbal abuse as yelling, demeaning, cursing, and talking about our loved ones as if they weren’t there. Even if they don’t understand the full meaning (and really, who knows how much intuition and understanding is there, but inaccessible in terms of articulation?), our loved ones still react to and fear verbal abuse. Just like each of us does.

Be kind. Be gentle. Put yourself in their shoes and ask “how would I want to be treated if this was me?” Be honest, but do it with love and tenderness. Let your tone always be one that comforts them. It takes effort. It takes self-control.

Sometimes it takes deep breaths and counting to whatever number you have to until you’re ready. That’s on each of us. Because we know better and can do better, while our loved ones don’t and can’t, especially with neurological deterioration.

I’ve been in enough nursing homes and assisted living facilities to see a lot of verbal abuse up close and personally.

It triggers a protective nerve in me that makes me want to go up to those who are doing it and say “You want to pick on someone? Bring it on. But don’t you EVER speak to any of these people, who could be your father, mother, grandfather, or grandmother like this!”

If I could save everyone who has ever experienced this at the hands of a caregiver, I would.

I can’t. But I urge all of us make sure we’re not guilty.

Promotional Video for “You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease”

The promotional video for You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease (published in April 2014) gives the background of why I wrote this book and gives a brief summary of each of the chapters in the book.

As someone who experienced this journey first-hand with my mom and who, since her death, has been actively involved in providing support, counseling, and information, as well as just listening, to many people who are on this journey themselves or with loved ones, I discovered the need for a book like this.

It’s personal. It’s accessible. And it’s practical. There is no other book on the market like it.

If you don’t read another book on dementias and Alzheimer’s Disease, you should read You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease (available on Amazon in both paperback and Kindle versions). It will be an invaluable resource that will help you and your loved ones tremendously as you walk the steps of this journey together.

You Will Never Be the Same Again

Caring for a loved one with dementias and Alzheimer’s Disease changes us. This, I believe, is one of the most unrecognized aspects of going through the journey of these diseases with loved ones.

I know with my mom, who had vascular dementia, Lewy Body dementia, and Alzheimer’s Disease as well as suffering from congestive heart failure, I changed throughout the course of our journey together, perhaps as much or more, in different ways, as she did. 

And now that she’s gone, it’s difficult for me to imagine that person that I was before all this started. That person in that configuration is gone. In some ways, that’s good, because that previous iteration of me had some flaws that needed mending, ideas that needed changing, and attitudes that needed correction.

In other ways, though, it’s challenging. Caregiving is a 24/7 job, especially as the diseases progress and the changes become more rapid and more intense, requiring every bit of time, effort, and diligence on our parts to ensure our loved ones are safe and comfortable.

Because of the nature of dementias and Alzheimer’s Disease, this is a long, extended high-alert, always-alert, always-ready position for caregivers. It becomes who we are and it reflects the tenor of our lives.

And then one day, it suddenly stops. Adjusting to that abrupt and radical change is, in my opinion, of all the things caregivers do in the course of taking care of loved ones, the hardest part.

I think of it as being in a car going from 120 mph to a dead stop within the time it takes to snap your finger. In some ways, it’s like the aftermath of a high-impact car crash that you walk away from.

I have learned, though, that unless you’ve walked in the shoes of caregiving day in and day out for someone you love with dementias and/or Alzheimer’s Disease, it’s very hard to relate to what the now-defunct caregiver is going through in this post-caregiving phase. It’s not that other people don’t want to understand. It’s just that they can’t really if they haven’t been through it.

There is a tremendous sense of being lost. Because loving caregiving requires such a high investment all the way around, when that ends, there’s a sense of purpose, usefulness, and worth that ends with it.

There’s a sense of wandering around aimlessly while the rest of the world around you is going on as it always has. There is a sense of not belonging anywhere, to any time, or any place. It seems like no matter what you do after that, it’s meaningless, compared to what you were able to give your loved one.

My guess is that will be something we carry somewhere inside us the rest of our lives. It’s just part of the change.

Another change will be that you’re more observant and helpful, especially around elderly folks. Not long ago, I volunteered to help during a cookout at a rehabilitation hospital. One of the things I was doing was helping people to the tables, some of which were on concrete and some of which were on grass.

There was an elderly woman with a walker who clearly had balance issues, and although there were staff members around, no one seemed to realize that as she was walking on the sidewalk toward a table in the grass, she was precariously close to the curb and all it would have taken is just a second for her to have lost her balance, fallen and hurt herself. Visions of Mom flashed in my brain and I ran over to help make sure she got where she was going safely.

Greater compassion toward and protectiveness of those who are vulnerable, as our loved ones suffering from dementias and Alzheimer’s Disease are, will be another change that occurs.

A friend of mine who works as a beautician in a senior care facility wrote on FacebookChange the other day about getting cursed out by an 88-year-old woman who didn’t want the shampoo rinsed out of her hair.

Almost immediately, the insensitive and disrespectful comments started. One person said that she would have sprayed the elderly lady in the face if she had cursed at her.

I got very angry. That could have been my mama they were talking about. I sent a private message to my friend explaining that the lady probably had some form of dementia and/or Alzheimer’s Disease and didn’t even know what she was doing and would have probably, given her age, never done that in her right mind. 

And the biggest change will be that your life will never be the same. You will never look at anything the way you looked at it before you embarked on the caregiving journey with your loved one. At a core level, you’ve changed.

And your biggest challenge will be figuring out what to do with that to go forward, to make the experience count, not just for your loved one, but everyone else, in whatever small way you can, that your life intersects with until the day that you draw your last breath.

And you’ll find it’s a very solitary, lonely journey. But like all the journeys you’ve been on up until now, it’s a necessary one. It will take a lot of patience and gentleness with yourself. It will take time. Most of it will be arduous.

But the most important thing I can pass on to you is not to quit and keep putting one foot in front of the other, even if for long stretches it seems you’re walking in place. Sooner or later, as long as you’re moving, eventually it will be in forward motion.