Tag Archive | Alzheimer’s Disease, Dementias, Age-Related Illnesses Caregiver Support

The Role of Stress For Our Loved Ones Suffering From Dementias and Alzheimer’s Disease

Nov1

In the fall of 2013, I took the “Care of Elders with Alzheimer’s Disease and Other Major Neurocognitive Disorders” course, which was taught by the John Hopkins School of Nursing. This course is designed for both individual caregivers at home as well as caregivers in a community setting like assisted living facilities and nursing homes.

If you are a caregiver at home for a loved one suffering from dementias and/or Alzheimer’s Disease, I strongly urge you to take this class. It’s free (health professionals can pay a nominal fee to get a certificate and CEU credit for the course) and it’s got a lot of really good information.

Before I talk about the stress effects on our loved ones who suffer with these neurological diseases, let me talk about the course itself. The approach for care being presented by the course is, unfortunately, in my opinion, still largely confined to the halls of academia.

I have never seen the comprehensive – and sensible and workable – and integrated approach to care that is patient-centered this course emphasizes being done in practice in professional (physicians, nurses, hospitals, etc.) and community-based (assisted living and nursing home) environments.

That, in my opinion, is a major shortcoming and flaw in American health care and in the way America treats its elders – as a business commodity off which they make large profits with little effort and little concern, instead of as people who’ve given the best years of their lives to others – their families, their jobs, their country of residence (federal and state taxes, social security, Medicare, etc.) – and who should now be treated with dignity, honor, and respect. 

Ironically, though, it is among the individual caregivers of loved ones at home that you see this model that John Hopkins is outlining for care of elders with Alzheimer’s Disease and other major neurocognitive disorders in practice. Not all, but in some.

I certainly know this model was the one I used with my mom. She was the priority. Not me, not anything else, and maintaining her dignity and showing her unconditional love, honor, and respect was paramount. I enforced it with the health care professionals on our team, and those who didn’t or wouldn’t make Mama the priority and treat her with dignity and show her the honor, respect, and love that she deserved were quickly fired by me.

(Most of our team was wonderful, by the way, as individuals; my biggest challenge was always getting and keeping everyone on our team on the same page, and that will always be the biggest challenge for the team leader-caregiver.)

This post will talk about the physiological cycle of stress and the effect of what can become continual stress on our loved ones with dementias and/or Alzheimer’s Disease.

I will also briefly list some of the stressors that our loved ones face. In subsequent posts, I will give some tips and guidelines on how we, as caregivers for our loved ones, can reduce or eliminate some of the stressors that we have control over to alleviate as much as is within our power the sources of stress for our loved ones with dementias and/or Alzheimer’s Disease.

I had to, through observation and trial and error, learn a lot of this on my own with Mama, but because she was my priority, and her comfort, safety, and care along with the continual assurance that she was very much loved were paramount, I took the time (one of three key components missing in a lot of caregiving – the others are patience and slowing down to our loved ones’ paces) to figure it out.

The physiology of stress begins in the brain as a chemical reaction to a demand (real, possible, or perceived) that exceeds a person’s ability to adequately cope.

Stress initiates survival-oriented behavior, which is necessary for surviving acute danger. The neurological response is to turn off the prefrontal brain cortex, which is responsible for intelligent and insightful behavior because we don’t have time to reflect on a course of action in the face of an immediate threat. Instead the “survival centers” in the midbrain take over and cause the brain to react instantly in an instinctive way (the fight-or-flight response associated with lots of adrenaline being released). 

prefrontal brain cortex stressThe picture to the right shows the brain in low and high survival-behavior modes. Note the “holes” in the second image of the picture. These are not actual holes in the prefrontal brain cortex, but are areas which are inactive. That’s about as good a visual of stress’s effect on the brain as you can get.

In every situation where we feel stress, the following reactions occur:

  • Cognition is disturbed and can be impaired
  • Emotions are disturbed and can be impaired
  • Behavior that may adversely affect well-being

An example of cognition being disturbed and impaired is that often in the most intense moment of a stressful situation a condition I’ve always heard referred to as “brain freeze” (inability to think, remember, recall anything for a short period of time) can occur. The brain just locks up. For those of us who are not cognitively-impaired already, that’s a scary situation. Imagine how much more frightening it is for our loved ones who are cognitively-impaired by these diseases.

We have all seen and experienced the intense emotional disturbances and impairments of stress. One example is uncontrollable sobbing. Another is ferocious anger. Like cognition, this emotional disturbance and impairment is even more magnified in our loved ones when they experience stress.

An example of behavior that may adversely affect well-being on the extreme end would be suicide. However, other examples might be throwing things, flinging our bodies against something repeatedly, and self-injury like hitting ourselves or cutting ourselves with a sharp object.

This may seem incomprehensible to someone who’s never had unrelenting and long-term stress so strong that it literally creates an insurmountable and continual deep inner pain that will not go away, but this behavioral aspect seeks to override that internal pain with physical pain, which, in general, is much easier to deal with and is short-lived. However, the results can be devastatingly permanent.

For those of us who are not cognitively-impaired, getting past the action stage of the behavior component is a matter of the ability (and sometimes this is just sheer force of will) to wait it out until it passes (it’s brief, but in times of stress, will recur frequently). For our loved ones suffering from dementias and/or Alzheimer’s disease, many times this ability has either been compromised or lost.

We all know people who do well, most of the time, with a lot of stress and other people who do poorly, most of the time, with even a little bit of stress. Most of how we respond to stress depends on the coping mechanisms we’ve developed over time.

One of the immediate coping mechanisms is the ability to determine whether the stressor is real or perceived. If I see a car going 70 mph heading toward me on a sidewalk, the stress is real. However, if I believe – but don’t know – that something that would negatively impact me could happen, the stress is perceived.

Like my mom, perceived stress is something I – and maybe I’m the only one left now that she’s gone, because it’s not something I hear other people ever talk about – really struggle with and my coping mechanisms are not as good as they should be, although I’m trying to work on improving them.

Mama and I were very different in temperament in some ways, but this is a trait we unfortunately share – Mama because of her experiences, especially during her childhood, and me because I need a plan, need to clearly see the plan, and need to be able to execute the plan, and when periods of life hit where there’s no visible plan and I’m in what feels like interminable limbo hell, I get stressed to the max.

A lifetime of chronically high stress levels combined with poor coping mechanisms is now being linked, by scientific research, to a risk of developing vascular dementia (the result of strokes and TIA’s) and Alzheimer’s Disease. One of the responders to stress is a hormone produced by the adrenal gland called glucocorticoids. Repeated exposure to glucocorticoids accelerates the aging process of the brain and damages and shrinks brain tissue, which is clearly seen in Alzheimer’s disease. 

stress dementia Alzheimer's DiseaseThis gives me more incentive to quickly and drastically improve my coping mechanisms (and I admit, so far, I’m failing way more than I’m succeeding, but I’m determined to make this happen) because I know that Mama’s poor coping mechanisms to stress played a role – not the only one – in her development of vascular dementia and Alzheimer’s Disease.

As our loved ones become more cognitively-impaired by these diseases, more and more things of everyday life become stressors (real or perceived) and their anxiety-tolerance thresholds get lower and lower, until almost anything can be a source of stress.

Since we know one of the results of stress is cognitive disturbance and impairment, stressors for our loved ones with dementias and/or Alzheimer’s Disease create even greater cognitive disturbance and impairment, in the form of more confusion, more agitation, more anxiety, more restlessness. There can be a serious and sudden decline in cognitive function because of a stressor that we may or may not be aware of. In addition, we see the emotional and behavioral disturbances and impairments in exaggerated form as well (crying, yelling, hitting, biting, and pacing are common emotional and behavioral manifestations).

However, a lot of these stressors are easily remedied or eliminated, which we will discuss in the next few posts on this topic. For now, though, I’ll list of some of the most common stressors that we’ll be looking at:

  • Unmet needs
  • Physical environments
  • Routines
  • Communication
  • Hearing
  • Vision
  • General physical health

We’ll begin next week looking at these specifically to see how they can be stressors and what we, as loving caregivers, can do to remedy or eliminate them as stressors for our loved ones.

Elevated Blood Sugar Levels Coincide With Poorer Memory Performance

Oct25

In the post I wrote about lifestyle dementia, I talked about lifestyle choices that could lead to higher risk of developing dementia. If you have not read this post, I strongly urge you to.

One of the lifestyle risks that I discussed was diabetes and out-of-control or poorly-controlled blood sugar levels and the negative impact of that neurologically long-term, including the probable development of dementia.

However, in this recently-released study, German researchers have found that high blood sugar levels that fall within the “normal” range produce poorer memory-testing results than blood sugar levels that were lower.

Blood sugar ranges diabetes dementia memoryAdditionally, in the people with elevated “normal” blood sugar levels, the researches found that the part of the brain responsible for memory, the hippocampus, was smaller (MRIs and post-mortem autopsies of people suffering from dementia show a dramatically smaller hippocampus as well) than the hippocampus in the people in the study with lower blood sugar levels.

The point? There are a lot of things in life that are completely out of our control. But we have lifestyle choices that are within our control, and while they may not preclude us from developing dementias and/or Alzheimer’s disease eventually, our lifestyle choices, could accelerate or delay it and could minimize it or worsen it. 

Today’s the day to start making those lifestyle changes for the better!

What Not to Say to A Caregiver of Our Loved Ones With Dementias and Alzheimer’s Disease

Oct23

While this article gives brief explanations of what and why you shouldn’t say certain things to caregivers of loved ones with dementias and Alzheimer’s Disease (and any other chronic age-related illness), I would like to focus on being mindful of what we say to caregivers who are taking care of loved ones suffering from dementias, Alzheimer’s Disease, and/or other age-related illnesses. The human proclivity is to talk without thinking and my hope is that, with this post, we’ll all slow down, take a deep breath, and think before we speak.

As difficult as it may be to comprehend in our multitasking, “have-it-all, do-it-all,” split-second world, once we chose to become caregivers, our lives stop in many ways and we have a single focus: taking care of the loved one(s) entrusted to our care.

This has become an anomaly in our 24/7 digital, connected, always-on society. Personally, I believe it is why caregivers often find themselves alone in taking care of their loved ones. Siblings, friends, and other family just can’t slow down, disconnect, and, yes, sometimes, can’t be bothered with the labor and time-intensive task of caring for a loved one.

11-things-not-to-say-to-a-caregiverAgingcare.com posted a list of things not to say to caregivers of our loved ones with dementias and Alzheimer’s disease.

I always add caveats to these black-and-white statements, so please know that I understand there are many circumstances, sometimes way beyond our control, to be an interactive part of the caregiving process.

What I am talking about here are the able, the capable, but the unwilling and unrelenting people within the circle of our lives who could, but won’t step up to the plate, but who often are our most vocal critics. 

But this post isn’t a diatribe against these people. There are  a lot of reasons for why, some of which I and all the other caregivers out there will never understand, and accepting that is part of building character. It is what it is. Anger, resentment, and bitterness don’t hurt anyone but us and our loved ones, so please don’t let any of these take root and let them become who we, as caregivers, are. 

This post is about what we all should be mindful of not saying to caregivers of loved ones suffering from Alzheimer’s Disease, dementias, and/or other age-related illnesses. It is about thinking before we speak and putting ourselves in someone else’s shoes. It is about sensitivity, care, concern, and love.

Most of the people who say some of these things listed in “11 Things You Should Never Say To a Caregiver,” have never been caregivers for loved ones and would never consider being caregivers because it would mean they would have to sacrifice their lives, give up what they want to do, put their own goals and ambitions aside – and risk losing their place and relevance in their careers, their social networks, their lives as they define them (and when a person makes the choice to be a caregiver to a loved one first and foremost, it dramatically, and not always positively, changes his or her life in all these areas both on a short-term and long-term basis).

I get that. Once upon a time in my own life, I was all about me, about my career, my success, my move up the corporate ladder. Every career move I made was a step forward, carefully planned (and blessed and allowed by God, much like Jacob in his life [reading through Genesis in the last week or so has made me realize how similar my view of myself is to Jacob’s view of himself until he hit critical mass and realized that he was the beneficiary of God’s blessings, much the same position I find myself in now]) even in spite of, many times, my arrogance and belief that it was all me – my talent and ability moving me ahead.

But always, and this was perhaps the thing that somehow, in spite of me, kept me grounded, I was deeply connected to love, responsibility, and obligation to my family, especially to my parents. Daddy and Mama sacrificed a lot to adopt us kids. They, in their own ways, both gave up more lucrative careers to build a family with us.

I bonded with these two people who chose me when they could have chosen anyone, and in spite of our rocky places, our mutual lack of understanding at times, our frustration with each other because we couldn’t find common middle ground at times, in the end, we loved each other unconditionally, and it was that unconditional love that tied us together no matter what.

So, when my time came around to complete the circle of life, I failed Daddy more than I failed Mama. I still, when Daddy was so sick, had not quite gotten beyond what I wanted and the idea that my life was all about me.

I will regret that the rest of my life and I will regret that I didn’t know what I didn’t know about what Mama was going through after Daddy died. But I didn’t know. Some lessons take time and they take longer to effect the changes that I wish could have happened sooner.

It didn’t then. It has now.

I’ve had to make a lot of peace with myself and with God (and, at times, still find myself making peace with myself and God as I realize where I let both Daddy and Mama down, unknowingly along the way) that I was younger and just didn’t get it the way it was back then. I did the best I could, although I wish I’d done better and more, in spite of the limitations of understanding, of experience, of knowledge I had then.

Time is both a curse and a blessing. In the middle of time, we don’t have a clue. We move through it blindly, occasionally having flashes of light and inspiration and understanding, but never really grasping it fully. After that time has passed, we have time to think, to reflect, to dissect, to analyze, and it is there that we gain wisdom, understanding, and often times, change for the better. It is never an easy process in either circumstance, but if we learn from it, then it brings about permanent and positive changes.

 A few months before Daddy died, he and I sat down, face-to-face, at the kitchen table thatMama and Daddy had been the gathering place for our family from my earliest memories. We held hands. He asked me to promise him that I would take care of Mama when he was gone. I promised him that I would.

I knew that day that Daddy didn’t have much time left. His heart function was very low and there were no options left for him to change that. It was the last time I would see him alive. He died about three and a half months after we had that conversation.

Daddy’s death was probably the beginning point of my stepping up to the caregiving role for Mama. There was a protectiveness for both of them that I’d had since I had graduated from college, gotten a job, and was in a position to help them through the rest of their lives, no matter how or where they needed the help.

After Daddy died, that protectiveness took hold much more deeply with regard to Mama. Something in me changed and I realized I was willing to do whatever it took to make sure Mama was okay, safe, secure, and comfortable. Although it took time for me to be willing to give up everything and make Mama the physical priority in my life (and I did), the root of that decision took hold the day Daddy died.

Along the way, after Daddy’s death and as Mama progressed with vascular dementia, Alzheimer’s Disease, and Lewy Body dementia, I heard many of the eleven things you should never say to caregivers.

Fortunately, by the time I heard them on a regular basis, my commitment, my focus, my life, on a physical level, was completely dedicated to Mama being where she wanted to be (and where I wanted her to be), which was at home with me, and I actually, once I got over the initial “how could you even say that?!?” reaction I always had, learned to just let it go.

In the end, when we come to these decisions and choices with our loved ones with Alzheimer’s Disease and/or dementias, we have to get thick skins and realize that most of the things that people who have never been through this say are not malicious, not unkind, and not critical, but are simply a product of inexperience, ignorance (and I don’t mean that in a bad way – no one can know what they don’t know), and a lack of understanding. 

This, for me, was where I really learned about not being easily offended, about forgiveness, about compassion, and about mercy. Good lessons. I still have a lot to learn, but I’ve made progress.

So the list of what not to say is provided here as a guide, an educational tool, an effort on my part to offer experience to those who don’t have experience, to teach those who don’t know, to provide understanding those who may not understand.

It is not a criticism. It is not a condemnation. It is simply another step to bridge the gap, which this blog, in part, was created to do, so that we all know a little more, understand a little more, and can help a little more as we interact with those caregivers of loved ones with Alzheimer’s Disease, dementias, and other age-related illnesses among our friends and our family.

VA Assisted Living Benefit (Aid & Attendance) for Military Veterans and Their Spouses

Oct21

va aid & attendance Alzheimer's Disease Dementia CaregivingI discuss this benefit in great detail in my book, Going Gentle Into That Good Night, as far as what’s needed to apply, some caveats with regard to obtaining military records, how to expedite the process, as well as how to calculate the full cost of care.

But, I wanted to at least mention here that a Veteran’s Affairs benefit for military veterans and their spouses for help with assisted living costs is available if the veteran served during a war (WWII, Korea, Vietnam, etc.).

To take advantage of it for our loved ones with dementias, Alzheimer’s Disease, and other age-related illnesses if they are eligible by going to the VA’s Aid and Attendance page.

God and Alzheimer’s

Oct18

mama-october-2010
This is a very personal and interesting article. I know my strengthening faith and God’s intervention, profound and miraculous at just the right time, guided me through this journey with Mama and I also know that Mama’s very strong faith guided her in the journey as well.

There wasn’t a day when the 5th commandment, which I call the “bridge” commandment because it applies to both our physical parents and to our Father in heaven, didn’t present itself prominently in my mind. I have always told God that I don’t want a long life (the promise of the 5th commandment obeyed), because a long life is no guarantee of a quality life, but that I want a life that eventually reflects Him completely.

Although I made my mistakes, had my shortcomings, and let Mama down at times along the course of her time and my time together as mother and daughter, just as I’ve made and make my mistakes, have my shortcomings, and have and do let God down at times as He and I have walked and walk together on our journey as Father and daughter, my hope is that the sum total of the balance sheet shows that I took (and still take) the 5th commandment seriously and  there’s a positive balance at the end of my time on this earth.

Where Have You Been?

Oct17

This is an incredibly poignant post about the history behind the song, “Where Have You Been?,” recorded by Kathy Mattea. This song was written by Jon Vezner about his grandparents. His grandmother suffered from some form of dementia.

What makes this personally poignant to me is that this was the exact question that Mom joyfully and buoyantly asked my twin sister and me upon waking on her “last rally” day (she went into her death sleep the next day, then died two days after that).

It was the first time in about a week and a half that she knew who I was, although we were living together and I was her primary caregiver throughout her suffering with vascular dementia, Lewy Body dementia, and Alzheimer’s Disease, and that she knew I was there with her.

I am very thankful for that day.

John Hopkins Free Online Course for Dementia Care Begins 10-14-13

Oct14

holding handsA quick reminder that this free, five-week online course on dementia care begins this week. Simply follow the link below to sign up:

https://www.coursera.org/course/dementiacare

For a downloadable copy of the syllabus, go to the Caregivers – Alzheimer’s Disease, Dementia, and Other Age-Related Illnesses group page on Facebook.

Medical Advocacy and Support and Dementias and Alzheimer’s Disease

Oct7

Author’s note: I originally posted this in June 2013, but I will now be reposting this every month, because it is one of the most important ways in which we can help and support our loved ones with dementias, Alzheimer’s Disease, and other age-related illnesses (“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” offers a more comprehensive list of the areas in which we can offer help and support to our loved ones).

*****

Today’s post will discuss our role as medical advocates and medical support for our loved ones suffering from dementias and Alzheimer’s disease. Here I will provide practical advice and suggestions, from my own experience, in managing the medical aspect as easy, as straightforward, and as  un-disruptive for our loved ones as possible.

The very first thing we need to do as caregivers is to make sure medical wishes and medical legal authority – medical power of attorney – are documented and authorized (primary care physicians can do this; I suggest getting them notarized as well). Hopefully, these have been discussed enough so that either our loved ones have already taken care of them or we know what they want and are able to execute them ourselves.

For anyone reading this who is not a caregiver or suffering from dementias and Alzheimer’s Disease, now is the time to think about these because time and chance happen to us all. For those of us who are caregivers, these are documents we need to locate and keep in one place.

A medical power of attorney document designates who will make decisions when the person drawing up the document is unable to.

Living willA living will essentially specifies whether a person wants everything done possible to keep them alive, no matter how long, how futile, and how expensive or whether only comfort care is given when it’s clear that the end of life is at hand.

DNR (Do Not Resuscitate)A DNR (Do Not Resuscitate) document states that the person does not want to be resuscitated if he or she stops breathing.

I suggest getting a briefcase or backpack to keep all the documents related to the medical care for our loved ones in. The briefcase or backpack should be accessible at all times, so it goes everywhere we and our loved ones go.

The medical power of attorney, living will, and DNR should be kept together in a folder in the briefcase or backpack. The other items in this backpack should include medical history documents and an up-to-date list of of medications (I’ve attached a sample Excel spreadsheet you can download and for this). Get an inexpensive wallet to put a photo id and Medicare Part A and Part B cards in and keep that in the briefcase or backpack as well. Always have something (electronic or pen and paper) to take notes with.

It is important to remember that we caretakers have a responsibility to advocate for our loved ones with dementias and Alzheimer’s Disease with all medical professionals (primary care physicians, psychiatrists, nurses, dentists, hospital staff, home health staff, and hospice staff). However, it is equally important to remember that, unless our loved ones are in the dying process and, therefore, unresponsive, that we need to include them in all conversations, explain to them what is being discussed and why, and make sure the medical personnel include them as well.

While our loved ones may not understand everything, we must not treat nor let anyone else treat them as if they are invisible. This is probably one of the greatest gifts of love and respect we can show them.

We have to usually initiate this by stopping the conversation the medical professional is having with us, turn to our loved ones and hold their hands, make eye contact, and explain. Eventually, the medical professional will make eye contact with both us and our loved ones.

The reality is that we don’t really know how much our loved ones comprehend or understand. It’s my personal belief that they understand more than the diseases allow them to respond to. I also know that touch and inclusion are two basic needs we all share as humans, so it’s essential that our loved ones never feel excluded or unloved.

Hospitalizations are hard on elderly people. I don’t know all the reasons why, so I wouldn’t begin to speculate (although I have some opinions about it) as to why. For our loved ones with dementias and Alzheimer’s Disease, hospitalizations are not just hard, but extremely traumatic because of unfamiliarity of everything: people, place, and routine. Going into a hospitalization, we as caregivers must be aware that it will be a setback for our loved ones when they come home.

hospitalizationBecause of the traumatic effect of hospitalizations on our loved ones, it is critical that we as caregivers stay with them as much as we’re able during the hospitalizations. We are, even if some of the time they don’t know who we are, familiar. And our presence can help neutralize some of the fear and anxiety that often occurs during hospitalizations. 

Always have a “hospital bag” with clothes, toiletries, and other things our loved ones need packed. That bag goes every time we take our loved ones to the ER or with us as we follow an EMS transport. (It is imperative to be sure to wash the clothes from the hospital stay immediately and separately from any other laundry when we get home.)

Spend the night for as long as our loved ones are hospitalized. I know, because I’ve spent way more nights than I could ever count with my mom – even before her dementias and Alzheimer’s Disease diagnoses because I didn’t want her to be all alone – in the hospital, that there’s iffy sleep, awful coffee, and not-so-great food. But our loved ones are worth it. 

But spending the night has an additional, and equally-important, benefit. Most doctors make rounds between 7 pm and 8 pm in the evening and between 6 am and 8 am in the morning, so by spending the night we’re always there when the doctors are there so we can be current on what’s going on with our loved ones. I’ve found that, in general, hospital nurses either don’t know much or are too busy to take the time to give you real updates, so the only in-depth information you’re going to get will be from the doctors.

The other benefit of staying with our loved ones is that we can make sure they get the quality care and attention they need. It’s been my experience that most hospitals simply to don’t have enough staff to provide much personalized care, so if there is no one there with the patient, the patient just has to wait until someone gets around to him or her. By us being there, we can ensure that our loved ones are clean, taken care of, and not uncomfortable in any way physically. That’s one of the best ways we can serve them.

As I mentioned, expect a setback after hospitalization. It can last anywhere from a few days to a couple of weeks. Recovery will eventually occur, but it’s important to know that it will never return to the pre-hospitalization state. That’s just the nature of these diseases.

It’s important to be patient, loving, kind, gentle, and tender no matter what. It’s my opinion that most of the behavior is a way of expressing fear, so it’s important that we allay those fears and help our loved ones feel safe again. It takes time and a lot of deep breaths sometimes, but this is another way we show them how much we love them.

 

Dying Wishes – The Discussion Everyone Needs to Have with Their Loved Ones Long Before They Need to Be Honored

Sep29

Ellen Goodman is one of my favorite essayists and authors. My first exposure to her writing was an essay entitled “The Company Man.” Even though I was just 16 years old when I read it in my AP English class, it had a profound impact on me. I still often think of it when the days and nights of life get long, hectic, and overwhelming and it helps me to step back and do, if nothing else, a little reset to get my priorities realigned.

Therefore, when I read her post on the living-or-dying decision-making (and second-guessing) she had to do for her mom when Alzheimer’s Disease had forced Ellen to be the decision-maker, I found it very interesting.

And familiar. Because even if you’ve had “the conversation” many, many times, I think second-guessing, especially toward the end of life when push comes to shove, is inevitable.

Mama and I had talked in-depth about her dying wishes for years and we had the documents and the paperwork done well in advance of her dementias, Alzheimer’s Disease, and congestive heart failure diagnoses.

Living will - dying wishesShe had a living will with no extraordinary measures, as I do. And she decided on a DNR after Daddy died without one and she saw first-hand the effects of futile life support that he had to go through in that last hour of his life because he didn’t have a DNR.

Even though Mama was a medical professional, as was Daddy, I believe the impact of seeing her soul mate and best friend go through being kept artificially alive even for that short period of time was profound and life-altering for her.

We talked about it a lot right after Daddy died, and I told her I had a DNR and had gotten itDNR (Do Not Resuscitate) in my early 20’s and I told her why I had (and still have) it. It made sense to her and we had her doctor draw it up and certify it.

As Mama’s heart health declined, we continued to have conversations about what she wanted and didn’t want as far as quality of life versus quantity of life.

We were so much alike in our very strong views that quality of life was what was important and not quantity (and this really is the core issue that must be addressed and resolved as part of the dying wishes conversation) that we never disagreed on care, treatment, and outcomes.

But it was because we had these heart-to-heart talks a lot in the last years of Mama’s life and we openly and frankly discussed death as the inevitable outcome and how Mama wanted that to be, as much as was within her control. 

When Mama told me she didn’t want to go to the hospital anymore for treatment for her congestive heart failure, I honored that wish, despite the frantic response about liability from the nurse on the phone when I called to have Mama’s doctor give us a prescription for the medicine (Lasix and potassium) and a schedule so that I could treat Mama for it at home.

The doctor ended up calling me himself and he got Mama in the next day to the office and gave me the prescriptions and schedule to do at home with a follow-up visit within the week with him. And we continued to do this at home until Mama’s death. That’s what she wanted and I was determined to make sure that her dying wishes were honored.

The issue came up again three months later when, on her birthday, Mama started throwing up in the afternoon and had chills and sweating. I wasn’t sure whether the symptoms were heart-related or not, so I took Mama to the ER. She had a gall bladder infection and after we were transferred to a bigger hospital early the next morning, a gastrointestinal surgeon came in and tried to talk us into putting Mama under general anesthesia to remove her gall bladder.

I refused that because I knew with Mama’s weakened heart, she wouldn’t survive it and told him we needed a Plan B. He reluctantly said they could put a drain in with local anesthesia to drain the infection out, but that reinfection was likely within a year. I realized even then that Mama’s health was such that it was unlikely that she would live long enough for a reinfection to occur, so after she and I discussed it, we agreed to the drain, which was successful in removing the infection.

It wasn’t until the very end of Mama’s life that I did any second-guessing. I knew logically and intellectually what she wanted and I was committed to honoring that. And I did.

But most of my second-guessing came in the form of wanting to be sure that I wasn’t overreacting as death approached and that once it was clear that Mama was in the dying process, I wanted to be sure she wasn’t suffering and I didn’t know how to gauge that (she wasn’t and I know that now, but it was paramount on my mind then).

The reality is that, with appropriate comfort care during the dying process, it’s harder to watch someone die than it is for them to actually die. Because we watch our loved ones die with all our senses intact, all our systemic functions intact, and all our alertness intact and it’s almost impossible to not project our intact selves into the process.

And that is why having the dying wishes conversation with our loved ones long before we have to honor it is so important. Most people seem to be very uncomfortable with this conversation – and the subsequent similar conversations that will and should follow it.

But let me ask you a question that shows why we need to get comfortable with it.

What if something with a life-ending outcome looming happened to you today and you’d never discussed and formalized your dying wishes with your loved ones and they were suddenly thrust into the position of having to decide whether to postpone the inevitable or let you go with no intervention in God’s timing?

Would you want your loved ones to be in that position? Would you want to be in that position? Think about it. And have the conversation. As soon as possible. 

Precious Story About the Circle of Life of Caregiving for Our Loved Ones With Dementias and Alzheimer’s Disease

Sep12

Momma and Me had a wonderful story today about bedtime kisses. And how the circle of life has the daughter kissing her mama goodnight, then comforting her with further kisses throughout the night to allay her fears, to calm her back to sleep, awakening at all hours to make sure her mama feels safe enough to go back to sleep. She draws the parallel between this and her own childhood when her mama did the same for her.

It’s a poignant post as I imagine the many nights Mama got up with us, especially as babies and small children, to make sure we were calm, unfearful, and safe enough to go back to sleep. And I did the same for her as her days came to an end.

I’ve always been a light and up-and-down sleeper. I suspect Mama spent more time trying to get me back to sleep in my early years (as I grew older, I just stayed in bed awake, only getting up if I heard her up with one of her migraines pacing the halls, and then – now – as an adult, just getting up and often doing the same pacing she did) than I spent in her later years doing the same with her.

I wasn’t afraid of anything. I simply have never had a good sleep rhythm or pattern and that continues to this day. But, as I became Mama’s sleep comfort over the years, I realize that was a blessing that I was able to give her when she needed it.

As Mama did with me when I was small, I was able to return a lot of kisses to Mama as our roles reversed. I never put her to bed or back to bed without a kiss, a hug, and an “I love you.” When the nights were filled with the symptoms of Lewy Body Disease, I’d lie beside her and with one arm around her, hold her hand with my other free hand. It never failed to help, even if it didn’t completely stop it.

It’s the little things that make the difference. With babies and small children. With loved ones suffering from dementia and Alzheimer’s Disease. They don’t cost anything but time and patience. This taught me about love in action. 

I’m thankful I had Mama and Daddy to model this for me as a child so it came naturally to me as an adult.

Remember the gifts your parents gave you, the sacrifices they made for you, the love they surrounded you with as they grow old and need the very same things from you. Life is a circle and those of us who are younger – well, everything in the universe in counting on us to complete it.