Tag Archive | congestive heart failure

The Little Things – Mother’s Day 2017

Mama and DaddyIt’s the little things that I think and dream about now that Mama is gone. Some of them are real and some, those in my dreamworld, are reconfigured to how I wished or hoped they had turned out.

As time passes between my parents’ deaths, I find more and more Daddy and Mama are together, the two of them and sometimes with my sisters and and sometimes just with me, but we all seem to be younger, when our lives were more together than they are now and we shared the little things that glued us together.
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Remembering My Beloved Mama: Muriel June Foster Ross

mama mother's day

I originally wrote this as a “Profiles in Dementia” tribute to my mama, but it’s appropriate as a remembrance of her birthday too.

Today would have been Mama’s 88th birthday. I miss her – and my daddy – terribly, but I’m glad her suffering – and his – is over.

I hold you both close in my heart and my love, and most importantly in my memories of thankfulness and gratitude for the blessing of both of you in my life.

Until we meet again.

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Profiles in Dementia: Muriel June Foster Ross (1929 – 2012) – My Beloved Mama

mama mother's dayWith Mother’s Day right around the corner, I decided to make this profile in dementia personal, and so I write about one of the heroes in my life, my mama, Muriel June Foster Ross.

Mama is the reason that I wrote Going Gentle Into That Good Night: A Practical and Informative Guide For Fulfilling the Circle of Life For Our Loved Ones with Dementias and Alzheimer’s Disease and You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

Mama is the reason the Going Gentle Into That Good Night blog exists.

And Mama is the reason why I created a Facebook support group for caregivers of loved ones with Alzheimer’s Disease, dementias, and other age-related illnesses.

My mama, Muriel June Foster Ross, was born March 2, 1929 in Erwin, Tennessee, a small town in the hollows of the Smokey Mountains in northeast Tennessee.

Fields of Gold: A Love StoryFrom the get-go, Mama had a life full of tragedy and triumph, successes and failures, bad times and good times, love and hate, deep-down sadness and uplifted-heart happiness and forgiving and forgetting, which I chronicled in the first book I wrote after her death, a memoir about my parents and us kids and our life together titled Fields of Gold: A Love Story

My mama was a most remarkable woman in so many ways, because no matter what came her way in life, she persevered, she overcame, and she prevailed.

Mama left me with an incredible legacy and some pretty big footsteps – ironically, because Mama was a lady whose physical foot size was 4.5W while my own foot size was almost twice that big and even wider – to follow in and I see continually how far I fall short of the example she left me.

However, even in my failures, I see Mama’s legacy of prevailing and not quitting. I’ve finally been able to see that even trying and failing is doing something and that beats not failing because I’m not trying to do something any day of the week.

It’s still hard for me to fail over and over, but I find myself rehearsing Mama’s life and all the places where it looked like failure and she could’ve quit but she didn’t. And, in the end, not quitting brought incredible meaning and blessings to Mama’s life.

Mama and Ethel Pennell SparksMy mama was intelligent, curious, active, humorous, whimsical, outgoing, and loving. She had a lifelong love affair with learning anything and everything. Mama was a decent writer – she got her second Bachelor’s degree in English at the age of 54 – but she was an even better oral storyteller.

Mama’s twinkling blue eyes and her mischievous smile could light up even the darkest room. She had her dark moments, her fears, and her insecurities as well, but she reserved those for the people she loved and trusted the most: my daddy and us kids.

Mama’s journey with dementias (vascular and Lewy Body) and Azheimer’s Disease probably began in 2005. The real nuts and bolts of these neurological diseases didn’t really appear in full force and persistently until 2009. And the downhill slide was Mama and me dancing togetherpretty precipitous from that point forward until her death (related to congestive heart failure) on August 14, 2012.

But I had the blessing of being beside Mama throughout the journey and through the end. That’s priceless. I also had the blessing that Mama didn’t live long enough to become completely uncommunicative and bed-ridden. That would have killed both of us. The journey was no picnic, but the blessing was that we shared it, and I am thankful for that.

It seems that each Mother’s Day since Mama’s death has made me miss her more than the one before. On the one hand, I’m glad Mama’s not suffering anymore. But, on the other hand, I miss her.

And not just the Mama I remember before these neurological diseases, but the Mama I remember after they appeared. There Mama and Daddywere moments interspersed with the chaos, the uncertainty, and the tough stuff that were some of the softest and gentlest and most loving moments Mama and I ever shared and those are etched just as deeply in my heart, in my soul, and in my mind. 

Side by side with Daddy, Mama’s resting now in the peace that often eluded her in life until the Sun of Righteousness arises with healing in His wings

May that day come quickly for us all. I love you, Mama. See you and Daddy soon.

 

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.

The Second Anniversary of Mama’s Death (8-14-14)

Today is the second anniversary of my mama’s death.

I miss her. But my love, care, and concern for her well-being outweighs my own pain and loss. Because her journey through vascular dementia, Lewy Body dementia, Alzheimer’s Disease, and congestive heart failure is over and she sleeps peacefully, awaiting the promise of total healing in the resurrection.

For that, I’m thankful.

In God’s Country: Northeast Tennessee and Mama

This is a remembrance of Mama (written at the blog I created for the memoir I wrote about our family), who would have been 85 today. She fought with strength, dignity, and bravely in all the journeys of her life – including vascular dementia, Lewy Body dementia, Alzheimer’s Disease, and congestive heart failure – and left an example showing us, her kids and grandkids, how to walk and endure our own journeys. Miss my mama and love her dearly. ♥

Fields of Gold: A Love Story - The Book

Eighty-five years ago today, about nine months before the Great Depression began, in Flag Pond, Tennessee, Muriel Foster Ross – my mama – was born to Samuel and Ennis Foster.

A doctor and both grandmothers were there attending the long and arduous birth that was taking a fatal toll on Mama’s mother and led the doctor, upon delivery, to dismissively say “that baby’s going to die” as he handed an underweight and frail Mama to her paternal grandmother, Grandma Foster, and turned his attention to trying to save Ennis Foster’s life.

Grandma Foster countered, “This baby’s going to live!,” and put Mama in the warming bin of the oven in the kitchen – a primitive incubator. Grandma Foster hovered over Mama through that afternoon and night, feeding her and wrapping her up in fresh towels every few hours.

By the next morning, Mama was stronger, had color, and it was…

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If You Needed Help, Does Anyone Have What They Need From You to Step Up to the Plate?

Kay Bransford and I seem to be on the same page a lot these days, but I see that we seem to be the only ones willing to tackle these subjects, so I guess we will keep sounding the drums that all of us need to be preparing in advance for the possibility that something – whether it’s Alzheimer’s Disease, dementias, other life-threatening illnesses, or simply time and chance – could suddenly and dramatically or slowly and insidiously render us incapable of taking care of our own affairs.

It seems to me that the very thing we try most to avoid thinking about, talking about, planning for is the very thing that will eventually happen to us all. And that is death.

Denial is, in my opinion, stronger and more pervasive in this area of life than in any other. “If I don’t think about it, then it isn’t real” seems to be the underlying thinking of this denial. I’m here to tell you that all the denial in the world won’t take away its inevitability of happening.

None of us, except those who chose to usurp God’s will and end their own lives, know how or when we’re going to die.

I believe most of us assume it will be quick and instantaneously, but the reality is that, in all likelihood, most of us will probably have a period of decline in which we will need help handling our financial, legal, and medical affairs before we take our last breaths.

And, after we take our last breaths, someone will have to take care of getting us buried and ending our financial, legal, and medical status among the living.

Who would that be for you? Yes, you, the one who is reading this post. Do you know? Does that person know? If that person knows, have you made this as easy as possible for him or her by doing your part and making sure he or she has everything he or she needs to do what needs to be done?

Or, because you don’t want to think about it or talk about, will that person have the burdensome responsibility of trying to figure it out all on his or her own?

We say we don’t want to be burdens to our loved ones. By taking care of this, you and I – we – have taken a big step toward easing the magnitude of that burden that, if we live long enough, will be shouldered by our loved ones.

I did my first will and living will shortly after I turned 21. I had just graduated from college, but not before having a very serious car accident (one that I miraculously survived with some significant injuries, but nothing like what I should have suffered) just before I graduated.

I’d never been that close to being face-to-face with death before, but it made me realize that I needed to make sure that my affairs – and they were paltry in those days but even then I had life insurance – were in order for the ones I’d leave behind.

From that point on, I have been meticulous about keeping my will up-to-date, the beneficiaries on my insurance policies up-to-date, and all the information my executor will need to take care of things up-to-date. I added a DNR to my medical wishes about 20 years ago, I got my cemetery plot 15 years ago, and I wrote out my funeral service and burial wishes about 10 years ago. 

Additionally, my executor has updated access and account information to everything online and offline to finish up my earthly affairs when I’m gone.

preparation-death-alzheimer's-disease-dementias-age-related-illnessesThis, in my opinion, is the last act of kindness I can do in this physical life. It is also one of the greatest.

Mama used to worry that something would happen to me (i.e., that I would die before she did) and then about what would happen to her. There were times in our lives together that could have been a possibility, but I always reassured her that I’d be there with her to the end. And I was by the grace of God.

Of my parents, Daddy was a paradox when it came to this subject. On the one hand, he had life insurance that would take care of Mama after his death and he insisted, in the year before his death, that Mama get her own checking and savings accounts and get credit cards in her name only.

On the other hand, there were other areas in which he had great difficulty facing his mortality. I remember Mama suggesting that they start getting rid of clothes and other things they weren’t wearing or using anymore and Daddy’s response: “the girls can take care of that.”

The will that Daddy had in effect, until shortly before his death, was the one that he had drawn up just after he and Mama adopted us. None of the information was pertinent or relevant anymore.

After much and extended (I’m talking a couple of years) discussion between Mama and him, they finally went to a lawyer, about six weeks before he died, to have a current will drawn up.

Mama was just the opposite. Somehow, I think all the deaths of close and beloved relatives in her early years made the inevitability of death more real to her. She, primarily, during our growing up years, talked on a regular basis about what would happen to us if she and Daddy died and how we needed to take care of each other and be good kids so the road without them would be easier for us.

Not long after Daddy died, she and I sat down together (I was now checking in daily and helping her navigate through some of the things that Daddy had done and offering advice and assistance as she needed it) and she told me what she wanted – and didn’t want – as far as end-of-life wishes.

We went to an attorney together and she did a will (which she later changed to a revocable living trust), living will, and all the POA paperwork. I had copies, she had copies, and she put copies in a safety deposit box at the bank.

At that time, I didn’t need or want knowledge or access to her financial accounts, but as time went on, she needed more of my help in dealing with them, so she gave me access to get into the accounts and help her (we always sat down and did this together until she wasn’t able to anymore) keep up with bills and what she had. 

By doing this with me, Mama made things much easier for me when the time came that I had to step in because she couldn’t do it.

I can’t thank Mama enough for her foresight with this gift. Instead of having to focus on everything brand new coming at me at once, I could focus on what was most important, and that was Mama: loving her, caring for her, being there for her.

The last couple of months Mama was alive, we’d be sitting close, holding hands, and talking and suddenly she’d say “I don’t want be a burden on you,” with tears rolling down her cheeks. I’d squeeze her hands and pull her closer in a hug, kissing the tears away from her cheeks, saying, “Mama, you’re not a burden to me. I love you unconditionally. I wouldn’t be anywhere else doing anything else but right here doing this with you.”

Mama would relax in my embrace and I would hold her tighter as I said these words because they were true and we both recognized that they were true, but most of all, I recognized how easy Mama had made things for me by equipping me with what I needed to step in easily and take care of the routine things so that I could save my energy, my focus, and my love for taking care of her.