Lost and Found: Transformation of the Spirit in Endstage Dementia.

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Families facing the end-stage dementia of a loved one actually experience two deaths; first the existential death of the person they knew, due to changes in personality, and ability to do the things that defined their lives, and the eventual inability to recognize their loved ones. The second death is the physical one, perhaps after years of gradual decline.

Letting go of the person you once knew is not easy. That includes the loss of companionship and meaningful sharing. Embracing the new changes can be even harder, when evidenced by behavior changes, resistance to grooming and disappearing short term memory.   But in the case of my mother, changes have also also transformative, almost a birth or rebirth of her spirit.  In turn, our relationship has been transformed.

 

For many years prior, My mother was always the first to declare, “If I ever get Alzheimer’s, just take me out and shoot me!” The fear of  dementia — of losing control and losing herself — was terrifying for someone who kept a highly structured routine.  But the downward slide into this insidious disease has also revealed a blessing of letting go of her self-imposed restrictions and embrace a new life.

She learned to be silly  and no longer censuring her opinions or worrying about how she would be perceived by others.

No longer fretting about her weight , she is happily relishing her desserts and chocolate snacks without apology.

No longer obsessed with her external image matching the preferences of her husband by wearing the right clothes or best jewelry, she is now reveling in her joy of putting on cheap plastic daisy earrings because, in her heart, she has always been a wildflower girl.

No longer fretting that I am unmarried, a status of great concern.  Her frequent inquiry,  “Can’t you find a good man?” has been replaced with “How is that sweet dog of yours?”

No longer worrying about housekeeping, she can sit for hours  simply watching desert animals outside her window or enjoying her favorites TV westerns.

She has lost her tendency to judge and worry and replaced it by accepting and even embracing what is.

She is now complimentary of everyone and everything, appreciative of even the smallest gestures.

When the caregivers tell me how sweet she is and I quickly retort, ”This is not the mother I grew up with!”

Do I still need to hold onto that past?

This emerging way of being has resulted in my own barriers falling away, allowing for compassion, forgiveness, and love that I had not expected to feel.

We are both being transformed.

So now I reflect:

Nearing the end of her life, has she actually found the authentic life she had previously denied herself, unencumbered by external forces or the need to please?

I have lost the mother I knew, but gained a mother whose spirit is shining through with simple joy.

In letting go, losing her old self, has she finally found her true self

or have I finally found her?

The Dying Process – Why we Need to Talk About It

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The question is not if we are going to die, but how we are going to die.

Encouraging healthcare providers to ask about and document end of life wishes is at an all time high, yet we are still not offering the training or support to talk about the most critical aspects – expected disease progression the natural process of dying.   If we can’t talk about it, how do our patients prepare for it? If they are not prepared for it and understand the options for care, and how can we say they are making informed decisions?

When facing the end of life, people are naturally scared. When decisions are based on this fear, or on lack of information or misinformation, it can result in devastating physical, emotional and financial consequences for the patient and family alike. To avoid this, we must do a better job in providing education about the dying process with honesty, compassion and simplicity.

If we as healthcare providers do not explain the natural course of the disease and the dying process, if we do not tell them how to respond to the expected changes to assure comfort and prepare for closure, if we do not alert the patient and family that death is approaching, we are doing a disservice through omission.  Grief of loss is hard enough, and can be worsened when there has been no preparation or forewarning.

The following unfortunate experience still happens too frequently:

It was bad enough that Gary was feeling the pain of only just understanding that his beloved wife was imminently dying of cancer. His pain was further exacerbated by learning too late that his best intentions of pushing food only created more discomfort and conflict for the love of his life.  “If I had only known,” was his lament, one that is too often shared by patient and family alike.

 

Due to the wisdom of the body as it prepares to shut down, many natural processes kick in to promote comfort.  When families understand their loved one is dying, when they understand the wisdom of the body as it shuts down, they are more likely to make decisions that honor the process of dying in addition to avoiding residual fear, anger and guilt.

 

For those patients with co-morbidities, it may also mean choosing how they want to die. Knowing the expected disease progression and dying process for each disease is essential for informed decision-making. When advancing dementia is evident, how long do you continue dialysis? If your patient with newly diagnosed pancreatic cancer is also experiencing increasing congestive heart failure, what is the benefit and burden of treatment and impact of their quality of life? What about treating a third bout of penumonia in a year to a nursing home resident with Alzheimer’s disease, who is bedbound and also has kidney disease? In any of these scenarios, which cause of death is easier or preferred for that person, based on their values? Each family needs the chance to understand and to decide.

 

We must all face the fact that ultimately, dying is not an option. We cannot avoid it by not talking about it. How we talk about, prepare for and honor the dying process is our responsibility.

 

 

To learn more about the physical and psychosocial changes related to the end of life journey and dying process, visit this resource page for my book and DVD’s – http://pathwayseol.com/videos-books

I Wish This Was Over! Uncensored truths about caregiving and prolonged dying

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After struggling to give her mother a bath for 45 minutes, Rene’s patience was spent. Her mother’s Alzheimer’s caused her to resist the bath, and Rene had to deflect her flailing arms and verbal assaults. With no time to take a bath herself for the last three days, she now sat down, exhausted and angry. Looking up with tears in her eyes, she whispered, “Why doesn’t she just die already?” She quickly censored her statement and declared, “What a horrid daughter I am to wish that!”

In progressive illness, the focus is necessarily on the care receiver. Yet the greatest suffering may be that of the caregiver, who can be emotionally, physically and even financially depleted. Perhaps you have put work or family life on hold to tend to an ailing family member. And after weeks and months, the strain is increasingly difficult to endure.

Quality of life issues impact both care receiver and caregiver. However, the needs of the ill person often take priority, while your own basic needs may go unmet. Over time, those unmet needs can create resentment. Yet when you imagine the scenes you see in movies that show endlessly loving and patient caregivers, you may feel a sense of guilt, selfishness and inadequacy.

Your neighbor talks about how honored she is to care for her husband 24/7. Is she telling the truth, you wonder, or is she also hiding behind a mask of hearts and flowers to hide her fatigue and frustration? Does she sometimes think, “I wish this was over?” You question reality. You want to slap her and find out.

Does this sound harsh or familiar?

Sometimes your suffering is compounded by the fact that your loved one has already had an existential death due to dementia. This is not the person you grew up with or married. There is no more meaningful conversation or shared laughter — no gratitude for the work you are doing. You are working for someone who may no longer recognize you, or who may even fight you as you attempt to provide care.

Prolonged caregiving of the dying can precipitate a troubling burden. You may entertain thoughts like, “I wish this was over!” and feel guilty for thinking them. Does this mean you do not love that person? Of course not. Does it make you a poor or heartless caregiver? No! It means you are human. You share these unspoken truths with many other caregivers. But because everyone censors their true feelings, you feel alone.

Give your suffering a voice and tell someone you can trust, someone who can understand and not judge you.

Attend a caregiver support group. Let off steam by exercising, journaling, painting or even breaking something you will not miss. If your loved one is in hospice, confide in the social worker. Talk about managing triggers and balancing your own needs with those of the person you are caring for. Talk with the chaplain to seek comfort, forgiveness and meaning. Use volunteer support or a respite stay on an inpatient unit so you can take time out.

Caregiving can be both an honor and a burden due to the many ups and downs. Forgive your loved one for “taking too long to die.” Forgive yourself for wishing it was over. Put down the mask and share your truths and find the support you deserve.

Initially posted in sevenponds.com blog, “Dying Well”.

For more end of life resources and blogs, go to http://pathwayseol.com

Doing it Right – How the Experts Manage their Own Dying

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We were eight very experienced hospice workers, surrounding the bed of Kim, our beloved friend and former hospice co-worker, who was now close to death. One would think we were a dream care team, and yet, there we were, arguing about her care.

“She needs mouth care.”

“No, she will choke on any water from that swab!”

“We need to turn her every 2 hours to prevent bed sores!”

“No, she is so close to death it will be uncomfortable and disruptive.”

“She is moaning and needs pain meds.”

“No, she looks comfortable – she’s just communicating with us or those we can’t see.”

Although this was our area of expertise, we couldn’t agree on the best care. We shared an unspoken fear of letting our friend down, of not providing the care she deserved to assure the most comfortable and dignified death.

“Doing it right.” While based in a loving intention, it seemed to be a moving object I and my esteemed and experienced friends could not fully embrace at the same time, despite being the “professionals.” We now better understood what this must be like for the hundreds of patients and families we had served, confidently providing direction and reassurance with patience and compassion — qualities we were now lacking for each other!

Our ego is attached to this need to do this right. It makes us wonderfully, albeit painfully human.

Kim’s partner had been busy for months, coordinating treatments, support, healing ceremonies, care giving schedules, and providing the right foods, supplements and holistic care. She fought to maintain a positive outlook and push back any fears or negative thoughts that might impact either care or outcomes. She committed to being superhuman in her tireless efforts.

Finally sitting down in total exhaustion, she exclaimed, “I finally realized, I’m not going to get through this looking good!” What a freeing statement! We laughed and cried with this truth.

Let go of the “shoulds.” Simply watch the response of the person you are caring for and let that be your guide. What might be needed at noon may be different by 2 p.m. It’s OK.

Recognize that everyone is grieving, and everyone is frightened of not providing the best care.

The key is the love we put into every action.

I could imagine Kim’s spirit looking at us all, both grateful and amused.

There is no perfection. There is only love.

And that is perfect.

It’s the Only Thing I have Left for You – Guest Blog

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When the Best Medicine Isn’t Traditional Medicine – This is the story form a true healer and I’m grateful he allowed me to post this on my site.

It’s the only thing I have left for you

I was a brand new physician on call and he had fallen off a barstool about a week earlier. Eventually he had trouble breathing and the ambulance took him to the Emergency Room. A chest x-ray, then a CT scan showed he had bled into the pleural space around his right lung and collapsed his lung almost completely. He had two broken ribs and was short of breath and I could see every breath was painful for him. He winced when I examined the bruised area below his right armpit and he stopped his breath short when I put my stethoscope in the area of his broken ribs.

He didn’t complain and, in fact, he never complained. He had to be taken to surgery for a decortication of his right lung, which meant the surgeon had to make a large incision between his ribs to go in and scoop out and peel off the clotted blood that was stuck to his lung. He had lost almost half his blood volume and needed transfusions before he went in to surgery. After surgery he had to have a tube going into his chest to pull the air and blood out continuously so his lung could gradually inflate itself again. He was on a ventilator for a few days and the tube was in for almost a week before the drainage decreased enough to pull it out.

He was polite every morning when I went in to round on him and he smiled at me every time, even when I could clearly see he was in pain. Once the breathing tube came out, he was able to talk, but he never volunteered any information and his answers were brief. He would never call the nurse to ask for pain medicines because he didn’t want to bother her and said he knew she was busy. He always thanked me for coming in.

He recovered from that completely and his collapsed lung just became a part of his history. We grew to really like each other and I was always happy to see him on my schedule. He had some abdominal pain at a visit several years later. I ordered x-rays and they showed pieces of shrapnel from a war injury in Korea. He had never volunteered that information and on further questioning, he also had shrapnel in his left knee. The shrapnel wasn’t the reason for his pain and it never really bothered him and he declined to have it removed. I made a notation in his chart that he was a war hero and needed to be treated with respect and for the most part the Emergency Room doctors honored that.

He continued to drink and off and on would end up in the hospital because of it. During his binges, he stopped taking his diabetes and high blood pressure medicines and eventually he was admitted to the hospital with a heart attack. This damaged the left side of his heart and made him prone to getting congestive heart failure, or fluid in his lungs. He didn’t come in for visits very often and most of the time I saw him was when he was hospitalized for something.

His diabetes continued to worsen and I could never convince him to take his insulin regularly. Consequently he suffered a stroke that made his right side weaker and that caused him to fall several times. He walked differently than he used to and he ended up with a blister on his right foot. That went on to become a sore that just never healed and he finally ended up with osteomyelitis, or an infection in one of the bones in his foot. This is very difficult to treat with antibiotics and he eventually had an amputation below his knee. He was never able to get the hang of a prosthetic leg and spent most of his time in a wheelchair.

His amputation made it impossible for him to live on his own and he was in a nursing home for about a year, then a group home. He always said the food was fine, the staff treated him well and he denied any pain. The staff brought him in for regular visits and his blood sugars and his high blood pressure finally came back into control.

I tried a few different ways to ask him about his war injuries and he always changed the subject. One time his eyes got moist when I asked him about Korea and his injuries.

“I couldn’t save him.”

“Who?”

“It doesn’t matter. It was a long time ago.” He changed the subject and he would never talk about it again.

His circulation was so bad that his left foot turned dark and he didn’t tell the staff members about it until his foot was cold. I saw him in the clinic and directly admitted him to the hospital. It was too late to save his foot and he had an amputation of his left leg just below the knee.

He came in a few times for urinary tract infections and he came in for regular visits, but years of uncontrolled diabetes had already done irreparable damage. His eyesight was failing and cataract surgery only helped a little. He was hoping laser treatments to his eyes would bring back some of his vision, but the treatments were to try to prevent further damage.

He went into renal failure and I had to stop one of his heart medicines as his kidney function was worsening. I referred him to a kidney specialist, but he didn’t understand anything that was said to him when I asked him about that visit.

“You’re my doctor. I’ll trust you to know what to do.”

He had episodes of congestive heart failure off and on and he usually recovered with a few days in the hospital on intravenous medicines to get his kidneys to get rid of the fluid buildup.

He was admitted for a similar episode and this time his x-rays showed a pneumonia filling his right lung. His temperature was high and his labs showed he was fighting an infection. He was agitated and moaning and needed to be sedated. He pulled his IV out and kept trying to get out of bed. His niece was his only relative and he had signed forms giving her permission to make decisions for him if he became incapacitated. He made it clear he did not want to be on a ventilator again.

Two days of IV antibiotics made no difference and his pneumonia was getting worse on repeated daily chest x-rays. His lung sounds were coarse and wet. I gave him a diuretic to try to pull some fluid off his lungs and it dropped his blood pressure too much to repeat it. He would intermittently answer questions, but mostly was restless and not responsive.

His niece finally asked if we could just make him comfortable, as he just wasn’t getting better and at 86 years old, didn’t have any reserve left. We stopped his antibiotics and I stopped all medicines except those for pain and agitation.

The next morning I went in and he was still restless and not responding to his nurse. His lungs sounded worse and his breathing was labored. I discussed plans with his nurse and she left the room and it was just he and I. I pulled a chair up and moved closer to his ear so I could talk to him quietly.

“It’s Dr. Vainio. I remember what you told me a long time ago. There’s no way you could have saved him. No one could and it’s not your fault. You did your best and he knows it and he always knew it.

I have something for you and for him. It’s the only Ojibwe song I know and it was given to me to sing in the American Cemetery in Luxembourg. I sang it there for my wife’s great uncle Johnny Mercer and everyone who died on that B-17 bomber and for every warrior there. It’s a Soldier Song and I want to sing it for you now.

It’s the only thing I have left for you.”

I didn’t have a drum, so I held his hand and I tapped out the drumbeat on the back of his hand with my other hand and I started to sing.

I was uncertain at first, but about halfway through the song, he began to relax and my singing became stronger. His grimace softened and he started to breathe easier and he stopped his constant restless moving. His hand had been simply resting in mine and he began to hold my hand and he held it until the song was done. He didn’t open his eyes and he didn’t say anything. After a minute or so his hand stopped squeezing mine. I held it for a little bit longer and I put it back on his chest.

His niece was with him and she called me after he died later that morning. “He was really calm, Dr. Vainio, and he died peacefully. What did you finally give him that made such a difference?”

“He was a soldier. I just gave him permission to die with honor.

It was the only thing I had left for him.”

posted with permission of Dr Vaino, originally posted In Indian Country
Arne Vainio, M.D. is an enrolled member of the Mille Lacs Band of Ojibwe and is a family practice physician on the Fond du Lac reservation in Cloquet, Minnesota. He can be contacted at a-vainio@hotmail.com.

Choices in Dying? Not without education and preparation

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Beam me up now, Scottie sounds like a nice, quick and clean escape from life.

 

Admittedly, I’ve thought this myself despite my experience of providing comfort during the dying process and bearing witness to beautiful deaths. How will I really feel and what will I choose when faced with my own death? My 40 years of observation in this field tells me that while I think I know that answer, I may not, but what I do know is what will be needed to help me make end of life choices.

 

Facing dying is a dynamic process, and what we fear or believe now often changes prior to the moment of death. This process is also transformative, for ourselves, and those we love. So how do we – and can we really – prepare for that moment?

 

Advance Directives are limited and often fail us for a variety of reasons. Will you be prepared or protected by a reimbursed visit to talk with your doctor about the use of machines or a hastily completed directive done at the hospital? Probably not.

 

Why? Because 1) we are humans who, when facing death, find out we aren’t ready to let go, and 2) we are often not informed of the markers of our decline or told directly that death will arrive within months, weeks or hours. When we are not given this information, we assume the fight is still on and the battle can be won. Therefore those advance directives we filled out as guideposts are mired in the heavy fog of poor communication and information at best, or misinformation and dishonesty at worst.

 

In my years as end of life educator, I’ve observed that the key to making the best choices is that they must be truly informed ones. We must know what to expect regarding disease progression, the management of changes over time, and the dying process. Talking about the dying process is particularly omitted in today’s conversations.

 

It pains me to observe that most healthcare practitioners, and even new hospice workers, are not trained to understand and talk about the dying process. For those we serve, this omission contributes to panic, the inappropriate utilization of interventions and unprepared deaths. This is why one third of those under Medicare spend their final 10 days in the intensive care unit. This is why increasing numbers of people with cancer are receiving chemotherapy 2 weeks before they die.

 

They didn’t know they were dying, and they didn’t know they had choices.

 

We talk around death in the guise of preparing for it. Some will intellectualize the process and others hope signed forms will save them from an unwanted scenario. Some get lost in philosophizing to distance themselves from the physical reality of dying. Some focus on their spiritual beliefs, finding comfort about what they believe does or does not happen after their body dies.   But what do they have to go through physically to get there? That’s where the biggest fears and biggest gaps in knowledge reside. It’s these fears that contribute greatly to the desire for aid in dying, and that’s why we must talk about it.

 

My mission is that end of life decisions not be based on fear, misinformation or lack of information.   When we have the proper knowledge, we make informed choices, and fulfill our right of autonomy and self-determination.

 

We all have work to do to improve how we prepare for death:

 

You as consumer must be willing to ask the difficult and necessary questions. We in healthcare must make sure we are training folks to answer those questions honestly and compassionately, or be able to refer you to someone who can. We must paint the picture for people about the short and long term benefit and burdens of potential treatments and not just provide an abstract with vague brush strokes.

 

If you have several medical issues, knowing the actual cause of death of each one may allow you to choose how you want to die. For example, dying of anemia or kidney failure may be more manageable or comfortable than dying of certain tumor growth or advancing dementia. The omission of this information leads to uninformed choices. You need to be clear in each step of the process how you individually define quality of life and then create goals with your provider that are actually achievable.

 

I am acutely aware that the choices I make don’t just impact me. They will impact my family emotionally, financially and spiritually. It will impact their bereavement and how they will approach their own dying.

 

For me, death with dignity is being prepared, being supported, and getting exceptional comfort care from my providers. It also means seeking a state of grace where I gratefully receive the loving care of my family and friends, while being in my own bed with my dogs still competing for my pillow. What does it mean for you?

 

Death with dignity can happen with or without a hastened death.

I have no issue with choices in dying as long as they are informed. Knowing there is choice has provided a comfortable backdrop as people learn about managing their disease. Current data reveals that in the end, many of those who obtain a prescription for a hastened death never use it.

 

It’s not my job to tell you what you should or should not choose regarding your own dying. It’s our job in healthcare to make sure that you never have to say, “If I had only known….”

 

Education in dying before choice in dying.   We have work to do

I want to die in my sleep….but you shouldn’t.

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“If I had my choice, I’d rather to die in my sleep”

Pretty common preference, right?

Here’s the good news:

Thanks to the wisdom of our body and how it shuts down to take care of you, that’s exactly what happens at the end of an illness or old age.

Over time, the individual has less and less energy, sleeps more and more, until he finally slips into a coma. While in that coma, the body continues to shut down and die. Depending on the illness one is succumbing to, that coma may last seconds or weeks.  So most people die in their sleep, as they wished!

Now here’s the perplexing news:

Although this is something we hope for ourselves, we often don’t trust or honor this process when it is our loved one that is dying.

The reasons can be simple: not understanding the dying process, the pain of letting go, the fear that there is something we need to do, or not do, to keep our loved one with us a bit longer.

When terminally ill individuals don’t want to get out of bed, or when they sleep more often, many concerned families declare they are over-medicated or perhaps giving up and willing themselves to die.  This can ignite a desire to stop a process they believe is hastening the dying.

There is also talk about ‘conscious dying’ and the belief that using any medications as death draws near will rob that person of final communications.

There is fear that medications are hastening death.

These fears must be acknowledged and addressed. It’s not an easy balance:  we want our loved ones comfortable, but worry about over-medicating. We want to honor the natural process of dying,  but we miss the conversation and hugs as they sleep more.  In my 40 years as a nurse, I have witnessed very few ‘Hollywood-type deaths’ where the person could say a few words just before dying. Usually they are in the coma, still able to hear you and feel the energy you bring to the bedside, but unable to respond beyond an occasional grasp of fingers, or a single tear of good bye.

Navigating the dying process and comfort needs requires the compassionate guidance and support of those trained in palliative and hospice care.

There are many individuals who will experience no uncomfortable symptoms at all and never take any medications in their finals days, yet the gradual increase in sleep occurs just the same. This is the natural process of the body shutting down. The presence of any symptoms depends on the illness and medications are there if needed to keep the person comfortable, not ‘knock them out’ or hasten death.   No one wants to think they or anyone they love will experience discomfort before death because needed medications are being withheld simply due to lack of understanding.  It’s that fear of physical suffering that can cause folks to say they would prefer a hastened or assisted death.

Know that increasing sleep is a natural part of dying.  Honor that process.  Provide necessary meds to promote comfort.  Surround them in your love as they slumber.  You are committed to the comfort of your loved one, just as you hope others will be committed to your own comfort when your time comes.

If you want to die in your sleep, let them die in theirs.

 

For more information about the dying process-  See “Dying to Know – Straight Talk About Death & Dying” on this website.

They are not dying because they are not eating….

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…they are not eating because they are dying.

The decreasing appetite and subsequent weight loss associated with terminal illness or natural end of life is an emotionally charged issue.  Because we associate food as a necessity for health and well-being,  we also associate the act of providing this sustenance with nurturing and comfort.  That approach  changes when managing advancing illness and age, and it’s hard to wrap our heads around the idea that pushing food may now be creating more problems.

For the purpose of this blog, I am assuming we ruled out reversible causes of weight loss such as nausea, mouth sores, pain, poor eyesight, cognitive changes, constipation and the like. Of course we want to address and correct those issues.  I am addressing the natural changes in appetite in advancing illness and age.  

A lack of appetite is often a natural and normal part of the body beginning to shut down.  The desire to eat and the ability to process food will diminish over time. Depending on the particular illness, this can begin days, months and even years before death.

It’s hard to see your loved one losing weight and growing weaker.  It can be scary.

A common, albeit incorrect belief,  is that the person is starving to death.  As a result of this fear, families may push spoonfuls of food into the mouths of their protesting loved ones.  Nursing homes and hospitals can often initiate artificial feeding.  Because we all want what is best for those we love, we need to know that  forcing food when the body says ‘no’ not only creates conflict between the individual and well-meaning provider,  but it can actually create discomfort, increase physical complications and yes, even hasten death.

This is why end of life education is critical.

The body has it’s own wisdom and to promote comfort we must understand and honor that.

Despite our best efforts, Alice’s cancer was not responding to her chemotherapy and she was quickly losing weight and muscle mass.  She was so thin, we could see the tumor growing in her belly.  Using its natural wisdom to protect her, her body released a chemical that shut down her desire to eat, resulting in a process that promotes comfort by releasing our natural endorphins.  That way, Alice was comfortable and did not experience hunger.  

Not understanding this process at the time, the healthcare team utilized what was thought to be the best medical judgment; we provided total nutrition through her veins.  

The next day I was on duty, I saw that the tumor had tripled in size.  

We had only fed the tumor.

We had done nothing to promote her well-being and in fact, increased her discomfort. 

There is a time and place for medical interventions.  They must realistically match the status of the illness and be an achievable goal.  Over a hundred studies have shown us that in the very end stage of an illness such as dementia and stroke, tube feedings may actually hasten death.   In addition to loss of appetite, those individuals may begin to lose their swallow or gag reflex.  They can choke while eating.  Although we cite risk of aspiration as a reason to place a feeding tube, its use can actually increase the likelihood of aspiration pneumonia, because when the stomach is overfilled, the fluid backs up and then goes into the lungs.  Other risks include the surgical insertion of a tube and complications from the decreased mobility when hooked up to a tube feeding.

You want to best care and don’t want to feel you did too little.

You also don’t want to compromise their quality or quantity of life.

The dying process is still not taught in many medical and nursing schools.   Your best resource is a palliative care specialist or end of life educator who can talk about the natural and normal changes a body will go through over the course of a terminal illness. With this understanding you will focus on that which honors these changes and promotes comfort, thereby providing the best care.

So what can  you do now, that feels as loving and nurturing as when you made their favorite foods?

Comb their hair, provide a gentle massage of the hands and feet, look through old photographs and reminisce, enjoy music together. Feed their spirit.

That kind of nurturing is never contraindicated.

 

For more details about how the body changes, go to www.bookaboutdying.com or the books and videos page on this site.

Pets and Grief: A Family Affair

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4adb4dc5c7ef3e522c5bd8a9c1961431Getting ready to meet the woman I was admitting to the hospice program, I was cautioned that her animals were very bonded to her.  To gain access to her I must first gain the trust and then permission of her dog and cat, who were also in the twilight of their years.

The dog was lying by the entrance to her room, and I was quickly greeted by a wagging tail and contented grunt as I scratched his ears while murmuring what a wonderful dog he was to love and protect his mistress.  I then proceeded into the room.

The very large cat sat on the lid of the bedside commode, positioned next to the bed in which the frail woman lay.  I sat down in front of the cat and put out my hand, also acknowledging what a wonderful companion she has been.  She eyed me up and down and once satisfied I was no threat, reach out her paw to gently touch my hand.  It felt like I was being anointed.  I nodded to the cat and assessed her beloved owner.  At the end, I again nodded to the cat and this time thanked her for being such an attentive pet and I was allowed to give her a neck rub.  But only for a minute and then I was motioned away her her standing up and pointing towards the door.  The dog then walked me from the door to the waiting family.

In addition to talking about what to expect in the ensuing final days to weeks, we also talked about the animals and their need for closure and to grieve.  Since I was only the admitting nurse I did not see them again.   A month later,  while waiting in the hospital hallway for another family member who was in surgery, the daughter noticed me  quickly ran up and pulled me aside.

She excitedly told me how grateful she was we had talked about the need of the animals. Her mother had died peacefully a week prior and while the family gathered and cried together, the cat jumped on the bed.  She said, “I was about to push her off, but I remembered what you said.  Instead I watched.”  She described how the cat slowly walked over the the face of her deceased mistress and gazed into it for some moments.  She gently patted her faced twice and jumped down.  It was good bye. Recognizing the need of her beloved pets, the  the family then picked up the dog and placed him on the bed.  He also examined his mistress, licked her hand, and jumped off.  The dog and cat huddled together while the family did the same.

Per my recommendation, they kept an article of her clothing, her nightgown, on which the animals slept  for several days. It was on that nightgown that the cat died peacefully 3 days later.  I was told the aging dog was still curling  up on it.  The family reached out to each other, 2-footeds and 4- footeds alike,  both grateful and comforted in sharing their loss.

Grief is a family affair.

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Holding On, Giving Up or Letting Go : Finding Closure on the Road to Good Bye

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We need you and can’t lose you now. You have to fight this so we can have more time. Don’t give up!

 

It may feel like person is choosing to die when they no longer want to fight. That can leave us with a sense of abandonment if we believe the person really has a choice. But in truth, there comes a time where we must all come to the natural end of life.   That knowing and acceptance often comes to the person long before the family.

Let’s face it. It will never be a good time for anyone we love to die. The desire to hold onto every minute, with the hope for more minutes and hours and days, is normal. The pain of loss is the price of love and we want to put off that pain as long as possible, but at what cost?

Ann was dying in the hospital. Her husband and two children knew she would never return home, and they remained by her side. After 3 days, I was surprised to see Ann was still clinging to life, but I understood when I overheard the whispered pleading of her young adult children.

They were grasping the hands of their barely conscious mother and kept repeating,

“You’re going to get better mom. We’ll get you out of here and when you are stronger, we’ll take that trip to Hawaii.”

 What Ann heard is that her children were not ready to let her go.  

So she stayed, just barely holding death at bay, despite her body working to shut down.

 I shared this interaction with the husband and he then took the children to another room to speak to them. They returned 10 minutes later, red-eyed but resolved.

They again sat by their mother and grasped her hands and this time tearfully whispered,

“We love you. We’re going to miss you.

But we’re going to be ok.”

Ann relaxed and died 10 minutes later.

Sometimes people need permission to leave. They may need to know that who they leave behind will be cared for, whether it’s a spouse with Alzheimer’s, their 20 cats, or even that their daughter who has yet to find a good man. Finding out and addressing their concerns is helpful in the letting go process.

There are times when the dying person knows how hard this is for the family, who is holding on, and may wait to die until they step out of the room or fall asleep at the bedside.

There are times when the family is ready and ‘releases’ their loved one by declaring:

“It’s ok to go now, Grandma”.  That’s ok.  Only need to say it once, though.  Now Grandma also needs to let go, as does her body.

You say feel it’s never ok to say that since it’s not ok that the person you love is dying.

That’s ok, too.  Good byes and closure can come in many forms.

Tell your favorite stories.  It affirms the life you shared while letting the person know how they will be remembered.

Holding on, letting go – a process to be recognized and gently honored for everyone involved.