Tag Archive | vascular dementia

The Stressor of Physical Health in Caregiving for Our Loved Ones Suffering With Dementias and Alzheimer’s Disease

Dec6

This will be the last post in this series about the role that stress plays in our loved ones suffering with dementias and Alzheimer’s Disease. 

We’ve discussed some of the most common sources of stress for our loved ones, including unmet needs, physical environment and routine, as well as communication, vision, and hearing.

This post will talk about how physical health – both preexisting conditions and and conditions that arise concurrently with or as a result stress-the-way-it-looksof cognitive impairment and neurological damage – can be one of the most continuous and more serious sources of stress for both us as caregivers and for our loved ones who are suffering with Alzheimer’s Disease and dementias.

All disruptions in physical health cause stress for all of us. Even a simple cold in those of us who are physically and mentally healthy causes stress because it interrupts our lives, slows down our lives, and may negatively impact our lives.

A common example for a lot of people is that if you don’t get paid medical leave at work and you can’t be at work because you’re sick, then you don’t get paid, so you have less income that paycheck. Quite frankly, that’s why so many of us just suck it up and go to work anyway unless we’re on the precipice of dying (and that’s a bit of humor, so please take it that way!) and why the entire office ends up getting colds.

The weaker immune systems in the office may end with upper respiratory infections and even pneumonia because we couldn’t afford the stress of having less money in our paycheck. That’s the current reality in the United States in a lot of companies.

So if we realize how much stress illnesses and health problems cause in us, then we understand how the stressor of physical health problems in our loved ones suffering with dementias and Alzheimer’s Disease is exacerbated by the neurological impairment and decline.

Except for early onset dementia or early onset Alzheimer’s Disease (younger than 65 years of age when symptoms start), most of our loved ones are well on their way in the physical aging of their bodies and their bodies are wearing out.

Heart problems are probably the most common physical health condition that our elderly loved ones face. Heart problems can manifest themselves as anything from hypertension (high blood pressure)  and atrial fibrillation (AFib) to malfunctioning valves, blocked arteries, and congestive heart failure. 

High blood pressure is an interesting health stressor to look at because it can be a contributor to vascular dementia developing, yet high blood pressure is related to stress (it is actually the result of constricted arteries, so the heart has to pump harder to keep blood flow going), so this stressor is really a two-edged sword for our loved ones suffering with dementias and Alzheimer’s Disease. Stress causes blood pressure to rise and high blood pressure causes stress – and damage – to the heart and to the brain.

However, high blood pressure poses a third risk – and stressor – healthwise. As our loved ones age, high blood pressure becomes more difficult to manage medically, so often multiple types of medications are used, including statins, beta blockers, and diuretics, and some of these – especially long-term use of diuretics to pull fluid off the heart and extremities – have detrimental effects on kidney function and can lead to kidney failure.

Atrial fibrillation can be corrected in its early stages with some medications (with a lot of risks) and later with a pacemaker. However, when looking at a surgical option for our loved ones suffering from dementias and Alzheimer’s Disease, we must always consider that going under general anesthesia will always result in further cognitive decline and impairment. And that will be a post-surgical source of more stress for our loved ones.

Heart-DiseaseDefective heart valves and blocked or constricted arteries will create stress for our loved ones in many ways. First, there is physical pain associated with these conditions and pain is a stressor. There is also a decreased flow of oxygen, so breathing will become more difficult. If you’ve ever had a hard time catching your breath (or suffered from respiratory problems like asthma), you know how stressful not being able to breathe can be.

But the decreased flow of oxygen also means less oxygen to the brain, which can make cognitive impairment even more pronounced, no matter where our loved ones suffering with dementias and Alzheimer’s Disease are in the course of their journeys, which is another source of stress.

I would strongly urge caregivers of loved ones who also suffer from heart problems to get their loved ones’ oxygen saturation levels tested. A continuous oxygen saturation level below 90 means that the body and the brain is not getting enough oxygen (you will find that these levels go extremely low during sleep).

Oxygen is available for home (or care facility) use and will help dramatically. A doctor has to prescribe it, but the saturation test results will make that easy. And a home health equipment company will deliver the equipment.

oxygen-concentratorWe used a non-tank oxygen concentrator for Mama at home and I had a portable version with a battery pack to take with us when we went out. I kept the portable oxygen concentrator charged all the time in case we lost power because I didn’t want oxygen tanks in our house (true confession: the oxygen tanks really made me nervous and I was terrified they were going to explode and kill us both and that was the only other no-electricity alternative).

Whether to surgically treat defective heart valves and blocked or constricted arteries is again a matter of weighing the overall risks with the overall benefits. 

Although I strongly advise against general anesthesia  with our loved ones with neurological damage and cognitive impairment, there are other surgical options that may be available to treat some of these conditions that do not require putting our loved ones all the way under anesthesia.

For example, my mom had congestive heart failure the last three years of her life, so we were both always on high alert for signs of it reaching an acute (full) stage and I got very good at knowing when we needed to do something, medication-wise, to get the fluid off her heart to prevent possible pneumonia and heart failure.

Five and a half months before Mama died, on a Friday afternoon in March (her birthday), Mama started sweating profusely and complaining of pain and nausea. I immediately started doing a medical inventory with her and trying to ascertain where the pain was and what, if anything, we could do at home to alleviate it.

When Mama vomited the first time, I asked if she wanted to go to the hospital, and she said she didn’t, but asked if I could help her over to the couch to lie down and sleep because she thought that might make her feel better.

Mama slept for about an hour with me hovering, wiping the beads of sweat off her forehead, wondering if I was doing the right thing by letting her decide to go the hospital or stay home. We’d already made the decision that she would not go back to the hospital for her heart problems, but instead would treat those at home under her doctor’s guidance.

I don’t know how I knew, but I knew this wasn’t a heart issue, but I didn’t know what else it could be. When Mama awoke from her nap, she groaned with pain and I managed to get a trash can over to her before she vomited again.

I put my hand over her heart and asked if that hurt there and Mama shook her head. I put my hand on her stomach and asked if it hurt there. Mama shook her head again. I knew she’d had her appendix out when she was 19 or 20, so I didn’t bother with her left lower side. I put my hand on her right side just below her ribs and she cried out and vomited again.

I told Mama we needed to go to the hospital and she agreed with me that time. After several hours in the ER, with pain and anti-nausea medication helping Mama with the physical symptoms, the tests the doctor had run showed that Mama had a gall bladder infection. We had to transfer at about 2 am that Saturday morning to a surgical hospital to deal with that.

The gastrointestinal (GI) doctor who came in around 6:30 am that Saturday morning told us that Mama needed her gallbladder removed. Without even worrying about the cognitive effects of general anesthesia, I knew Mama’s heart wasn’t strong enough to survive it.

I told the GI doctor that wasn’t an option because of her heart and I could visibly see the “whatever” look on his face when he very disdainfully told both of us that he could put a drain into to remove the infection under twilight anesthesia, and I’d have to take care of it for six weeks, but it wouldn’t remove the problem and we’d have to do it again within a year.

I knew the odds of us having to do it again before Mama died were slim to none, so Mama and I talked about it and we agreed to the drain. The procedure was scheduled for Sunday morning.

On Sunday morning, a nurse brought surgery paperwork into Mama’s room early for me to sign. I told her “no surgery” and I refused to sign the paperwork until the GI doctor changed it to the procedure for putting in the drain.

And even though we chose the least affecting method for Mama to do something that had to be done, it caused a lot of stress for Mama (both the procedure and the six weeks the drain was in) and it negatively affected her cognition dramatically for several weeks (she finally stabilized with a little improvement by the third week in April).

When we got home, I immediately revised Mama’s diet to include foods that would help her gallbladder and remove foods that might lead to another infection. I tried to keep a lot of fat out of our diets anyway, but I also knew that Mama had a limited amount of life left, so I indulged her love for ice cream every evening for dessert after dinner and when she told me one day she wanted “a hamburger at that place we used to go to,” I let her splurge on a Five Guys burger with the works and french fries.

But the stress of Mama’s physical health problems never fully went away after that. Even though she recovered beautifully from the gallbladder infection, the congestive heart failure was gaining ground and she was in pain with her heart frequently.

And that would increase her levels of stress, alternately making her worried – about me and the “burden” she thought she was to me (I always reassured her that she was not a burden to me and I wouldn’t be anywhere else doing anything else because I loved her) – and agitated about things. 

My struggle – and our struggle as caregivers for our loved ones with dementias and Alzheimer’s Diseases along with other physical health problems – was not to let Mama’s stress get me stressed out.

Most of the time, I did pretty well managing my own stress in front of her.

But there were plenty of times where, even though Mama didn’t know it, my own stress levels from wanting to make sure she was comfortable and not in pain and that I was doing everything right and my own knowledge that the end was close even though I didn’t know what that would look like were extremely high and sustained.

Truth be told, I don’t really think even now, a year and a half after her death, my sustained stress levels have gone down. It’s seems as though I just traded one kind of stress for other – and, in my opinion, worse – kinds of stress.

(I often wonder if this is just the new normal for me. And how the effects, if I live long enough – although I hope I don’t because I don’t want to be a burden to anyone – will play out for me. I plead with God every day to end my life before I outlive my body and my brain.)

One other type of physical health stressors that are common to our loved ones with dementias and Alzheimer’s Disease are the cognitive impairment-related health issues. The two most common are pneumonia and urinary tract infections.

Pneumonia is many times listed as the cause of death in our loved ones with dementias and Alzheimer’s Disease. This is because as neurological damage increases, having trouble chewing and swallowing (automatic reflexes controlled by the brain) causes choking (a stress mechanism) and food gets aspirated into the lungs, causing infection.

Urinary tract infections can be very common in our loved ones as well. A lack of hydration can be one cause, while improper hygiene can be another cause. However, both can, at the same time, be causes. Urinary tract infections are treatable with antibiotics, so it’s imperative to start those as soon as symptoms appears.

One of the most common symptoms of a urinary tract infection in our loved ones with dementias and Alzheimer’s Disease is a sudden and sharp cognitive decline marked by profound confusion, extreme agitation, and sometimes physically aggressive behavior (a stress mechanism) where there was none before.

So, if we as caregivers observe this in our loved ones, we need to seek immediate medical treatment for them, either by home health nurses or by going to the ER.

This concludes this series on stressors and how they affect our loved ones with cognitive impairment and neurological damage. I hope it’s been informative.

I plan on doing another series in the future on some of the ways we – who are still healthy mentally and physically – can reduce or eliminate the potential stressors others might face if we get terminally ill (these are terminal illnesses) or we die.

Do Extroverts Outlive Introverts?

Dec5

Like Kay, I am also an introvert (on the extreme end of the spectrum). I very much enjoy one-on-one or small-group interactions with deep and meaningful conversations, but even those suck up a lot of energy and I need recharge time afterwards.

Big groups of people, especially in non-business settings (for some reason, I can handle that better because it doesn’t require anything but me being a SME [subject matter expert], which doesn’t tax my energy reserves because what I need is automatically there and doesn’t require a great deal of effort] just overwhelm me – too much going on, too much noise, too much of everything. I get zapped quickly and easily and just want to find a quiet corner to regroup and be invisible in.

I also highly recommend Susan Cain’s book. There were points reading this where I suddenly felt tears running down my face because I realized that she was accurately describing me and that it didn’t mean I was crazy, odd, weird, or any of the other negative descriptors that the western world, which places a high value on extroversion, while considering introversion to be undesirable and abnormal – and changeable (it is not!) – ascribes to introverts.

Ironically, introverts understand extroverts (even if they drive us crazy), but extroverts, through no fault of their own other than temperament and personality, are pretty clueless about introverts. In their cluelessness, they can often be insensitive, offensive, and abrasive. Introverts will take all of that deeply to heart for life sometimes while extroverts (a) don’t even realize what they’ve done and (b) forget it as soon as they’ve done it and move on to the next energizing thing that catches their attention.

This book will help both extroverts who want to understand introverts and will help introverts understand themselves better.

To Kay’s question, I’d venture to say “yes” as long as they have an active social network and excluding all other health/life factors. Mama was more of an extrovert (although she had some introverted tendencies at times) and I’m glad she was able to have a big social network as long as she was able to handle it. However, too much of noise, people, activity as her vascular dementia, Lewy Body dementia, and Alzheimer’s Disease progressed as well as becoming even more hard-of-hearing made a lot of social activity way too overwhelming and confusing for her.

As an introvert, will I have a shorter life? If so, no complaints from me. The quality of whatever life I have left and the character I develop with God’s help is all that’s important to me, not a bunch of Ecclesiastes 12 years.

Kay H. Bransford's avatarDealing with Dementia

quietMy Mom is calling me up to six times daily now and we have a varied conversation about the mail. On one call she will say in a disgusted voice “I’ve only gotten two letters about Dad’s passing” and then a half-hour later she’s adamant that “I’m not getting ANY mail.” Each time I direct her back to where I stacked all the letters I found dispersed throughout her apartment. Sometimes, it takes several attempts for her to find the drawer where we put the stacked the letters together. On each call, as patient as I can be, I work on finding out what specifically is troubling her as I previously discussed in the Question Behind the Question.

Today, when I asked her who she was expecting letters from she said she hasn’t gotten any letters from her girlfriends. I dug a little deeper and asked her which ones?…

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Is It Ever Okay to Be Dishonest With Our Loved Ones Suffering With Dementias and Alzheimer’s Disease?

Nov21

I’m actively involved in several online support groups for caregivers and sufferers of dementias and Alzheimer’s Disease.

Again and again, when caregivers post about issues and problems they are having in their roles as caregivers for loved ones who have dementias and Alzheimer’s Disease, I see in the responses, from other caregivers, the overwhelming advice to tell “fiblets” to handle the tough issues or problems.

I have noted that none of the dementias and Alzheimer’s Dementia sufferers in these groups offer this advice. Instead, they stress telling the truth at all times because as loved ones who are suffering with these diseases, they want to know the people they’ve entrusted their care to are being honest with them.

It is only the caregivers who suggest being dishonest and deceitful.

I’d never heard the term “fiblets” until I joined these support groups, but I know what that means morally and ethically. It is a synonymous term for an equally ubiquitous term in the general population: “little white lie.” (Lies, by the way, are lies. All the minimizing adjectives in the world do not change the bottom line of being dishonest and deceitful.)

lies deception fiction alzheimer's disease dementia caregivingEach time I see the word fiblet, I physically and mentally cringe. Partly because of the “it’s okay” mentality of those suggesting being dishonest by a labyrinth of excuses and justifications that, in the end, ring hollow.

And I cringe partly because of my own internal rejection of the morality and the ethics of being dishonest with anyone, no matter what his or her current neurological/mental/physical state. Beyond my foundation of absolute right and wrong that says that all dishonesty is wrong, I see the practical and detrimental effects of this practice in the relationships involved.

If I, as a caregiver for a loved one suffering from dementias and Alzheimer’s Disease, am willing to be dishonest about routine matters (e.g., “Dad left the house,” when Dad is actually there or Dad is dead, “I called the doctor,” when in fact no call was made, or “your brother/son was here yesterday,” when he was not or is dead) with my loved one(s), then how can I be trusted, in a general sense, and by my loved one and everyone else in my life, to be honest about anything else?

I destroy my credibility one lie at a time. And I create, in my own mind, each time I am dishonest, a myth that it’s okay, that it’s the easiest way, and that it’s necessary. And, I also am creating a habit that will automatically default to dishonesty any time I face a difficult situation in life. At some point, down the road, I won’t be able myself to know what is true and what is not because of all the lies I’ve told before.

So, not only have I broken the trust of my loved one(s) who’ve entrusted their care and their lives to me, but I have also broken the trust of everyone else in my life.

So, is it ever okay to be dishonest with our loved ones suffering from dementias and Alzheimer’s Disease?

The unequivocal answer is “No!”

Gracious Goodbyes – Missed Connections

Nov18

I don’t think any of us who’ve been through this journey through dementias and Alzheimer’s Disease with our loved ones doesn’t have events like “Gracious Goodbyes – Missed Connections” describes.

Somewhere back in the farthest corners of our minds, when even the simplest things escape our short-term memories (I’ve had so many of these lately when I have not been, when asked a direct question, in a sort of on-the-spot situation, that I knew the answer to like the back of my hand, able to find the answer – I suspect rationally that it is stress and overload, but there’s always that nagging fear that this is the beginning of a journey I’ve already been on and don’t want to go on again), we wonder if this the beginning of our own journeys into dementias and Alzheimer’s Disease.

Ironically, I am not related biologically to my mom, who suffered from vascular dementia, Lewy Body dementia, and Alzheimer’s Disease. So, based on biology and logic, I shouldn’t worry. However, I know so little of my own biological background and medical history that I realize everything in this arena is totally up in the air.

On the one hand, I don’t know that I really care, in the big scheme of things. After all, I’m human. Therefore, by default, I’m terminal. The unknowns are when, how, why, what, and where. My hope (and prayer) has always been quick, soon, and with as little fuss and muss as possible.

I don’t want anyone to have to execute my DNR and my living will, both of which give me the quickest exit possible from this physical life. I’d rather God just step in, end my life in a flash, without leaving the agony of honoring my wishes to those that would have to make those decisions. I know they would, but I’d rather spare them the pain of having to do it.

But I also do not want my loved ones to have to go through the prolonged process of me dying the slow death, first mentally, then physically, that dementias and Alzheimer’s Disease bring. So, in that sense, I do care. Not for myself or for my life physically, but for those who would have to deal with these diseases if they come.

So, in the back of my mind, I don’t worry so much as I pray that I’m spared this particular way of exiting physical life. Each time I forget something I know I know, when I’m put on the spot to remember it, brings a twinge of anxiety, a moment of wondering, a slightly deeper intake of breath for what might be, what could be, but what I hope and pray will never be for me or for my loved ones.

The Stressors of Unmet Needs, Physical Environment, and Routine in Caregiving for Our Loved Ones with Dementias and Alzheimer’s Disease

Nov7

In “The Role of Stress for Our Loved Ones Suffering From Dementias and Alzheimer’s Disease,” we discussed the negative impact that stress has on everyone in terms of cognition, emotion, and behavior. We also discussed that this negative effect gets exacerbated when our loved ones with dementias and Alzheimer’s Disease experience stress.

In this post, we will look at three common areas that can be stressors for our loved ones with dementias and/or Alzheimer’s Disease and what we as caregivers can do to reduce or eliminate these sources of stress.

A source of stress for all human beings is not having our needs met. These include physical needs, spiritual needs, emotional needs, and psychological needs. Even for those of us who have no cognitive impairment, these needs are difficult, at times, to quantify and to verbalize.

For our loved ones with cognitive impairment, where thought and verbiage are tangibly disconnecting from each other, expressing needs that need to be met is even harder, if even possible. Therefore, the responsibility lies with us as caregivers to examine whether there may be needs that aren’t being met.

I strongly urge each of us as caregivers to call to conscious memory who our loved ones were before dementias and Alzheimer’s Disease took center stage. This exercise is vital in determining what needs our loved ones may have that are not being met and then finding ways to meet those needs.

So, let’s ask some questions. Was your loved one a social person who enjoyed being around people? Were faith and spiritual sustenance an important part of your loved one’s life? Was your loved one hot or cold-natured? What were your loved one’s food preferences, meal schedules, and general diet look like? Did your loved one like to exercise or not? Did your loved one like being outdoors or indoors? Did your loved one prefer a lot of light coming into the house or did your loved one prefer less light?

dementia-social-stimulationWhile this list is not exhaustive, we should be able to to see areas in which our loved ones with dementias and Alzheimer’s Disease may have unmet needs. If our loved one was always cold-natured, for example, and we keep the temperature in our homes low, then the need that needs to be met is ensuring that our loved one is warm at all times, whether that means dressing them in layers or turning up the thermostat.

Another example would be that, if our loved one was a social person who loved to be around other people a lot, he or she may be lonely or experiencing isolation as their social network disappears (this happens frequently, I believe, because of the discomfort that a lot of people experience around dementias and Alzheimer’s Disease and because communication can be difficult, so most people don’t make the effort). An easy remedy to this can be something as simple as going to sit in a bookstore, a library, or even the mall on a regular basis. Even though our loved ones may not be making one-on-one contact with all those people, we can talk with them and they can be surrounded by people and it gives the same effect.

I offer these to hopefully stimulate our creativity in safely and successfully eliminating, as far as we are able as caregivers, the unmet needs of our loved ones with dementias and/or Alzheimer’s Disease. As needs get met, there will be less depression and less apathy, which is often the result of unmet needs.

Another stressor can be the physical environment. As cognition declines, the ability to sort through complex situations to have a sense of where to go, what to do, and how to do it becomes increasingly difficult.

So let’s look at some ways that physical environment can make this even more stressful for our loved ones suffering with dementias and Alzheimer’s Disease.

Let’s take clothing (which for me, personally, has always been a challenge because of a rare aspect of color-blindness I suffer from, so I have a very limited and basic wardrobe to eliminate this as a stressor from my life). For our loved ones suffering with dementias and/or Alzheimer’s Disease, opening a closet full of clothes and shoes is a stressor. Often times, when you see someone wearing the same clothes several days in a row, it’s because the physical environment component of trying to pick clothes out of a closet is too stressful.

pjs-on-pillow-dementia-organizationThere are several ways to eliminate this as a stressor. One is to pare down the clothing to a few outfits and to put clothes that are meant to be worn with each other together on the same hanger. Another way to address this is to lay the day’s clothing out where it needs to be put on (for example, a daytime outfit hangs on the closet door – don’t forget the shoes! – and pajamas are on the pillow on the bed).

Why does this help? Beyond the obvious reason that it reduces stress and confusion, it can often also help our loved ones be more independent in personal grooming and dressing. Most dependence comes from simply not knowing what to do. If we as caregivers can eliminate the stressor of having to make complex choices, then we can also give the gift of more independence to our loved ones. 

In many ways, this is no different from what parents do with children as they grow up to make the children more independent in taking care of their own needs as much as they are able. It reduces the stress for everyone involved, and our loved ones are no different in that respect.

Other physical environment components that can be huge stressors are clutter and a lack of organization. Remember that our loved ones with dementias and/or Alzheimer’s Disease are also experiencing visuoperceptual changes. Therefore, the more clutter and lack of organization that is in our loved ones’ physical environments, the more stress from visuoperceptual issues will affect our loved ones negatively.

Practical ways to eliminate this stressor are to get rid of the clutter and get organized. Pathways need to be clear. Get rid of unnecessary and distracting knick-knacks and other items that are just taking up space (often having too many things to look at is overstimulating and creates stress). Have all living areas organized.

For example, Mama spent a lot of time in the recliner in the living room where she could read, look outside, and we could do activities together. The end table next to the chair was organized with her hearing aids (in a case), her glasses (in a case), her Bible, and a coaster with a fresh glass of water on it at all times. Everything went in the same place every time, so Mama knew exactly where to find what she wanted or needed.

The last stressor that we’ll discuss in this post is daily routines for our loved ones with dementias and/or Alzheimer’s Disease. Unstructured or erratic routines are huge source of stress for our loved ones, in part, because they’re losing or have lost their internal clocks of knowing when to do what and they’re depending on us as caregivers to help them, and when we don’t seem to have an internal clock and schedule of when to do what, it’s frightening.

dementia-regular-routineThe unpredictability of something as simple as mealtimes can be very, very scary (think about when we were kids and didn’t know how to tell time and if our parents had eaten whenever the mood struck them, there would’ve been a real concern about if we’d ever eat again).

If bedtime’s at a different time every night, then our loved ones suffering with dementias and/or Alzheimer’s Disease don’t know when they’re supposed to sleep and when they’re supposed to be awake. And if our daytime routines are different every day, there is absolutely no sense of a firm foundation that our loved ones can count on and expect to happen in sequence each day.

All of these create a huge amount of stress for our loved ones. And it’s unnecessary stress that can easily be eliminated. However, it means that we, as caregivers, need to put ourselves on a schedule and adhere to it without deviation (and that can be inconvenient, at times, for us, but it’s not about us, but about our loved ones, so we just have to have the discipline to make it happen).

Once a predictable routine is established and followed, this stressor will be eliminated from the many possible stressors that our loved ones suffering with dementias and/or Alzheimer’s may have be dealing with.

A lot of this is just common sense, but sometimes we have to be reminded to use common sense because life can be quite chaotic and crazy to the point that we, as caregivers, forget to stop, step back, and ascertain what we can do to help our loved ones out. It takes time and it takes patience and it takes slowing down to their paces, but they are worth it! 

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.

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.

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.

The Power of Music: Soothing, Calming and Connecting with Our Loved Ones with Alzheimer’s Disease and Dementias

Aug30

“And so it was, whenever the spirit from God was upon Saul, that David would take a harp and play it with his hand. Then Saul would become refreshed and well, and the distressing spirit would depart from him.”
I Samuel 16:23 (NKJV)

Music universally touches the soul. There is abundant evidence of how effectively music calms, soothes, and relieves the frustration and anxiety of those loved ones among us who, because of neurology and/or biology, are unable to always fully verbalize their needs and responses to our desire to meet them.

We grew up in home filled with music. Although neither of my parents was a musician – and they had only a 33% success rate of their children becoming musicians – they loved music. They had an eclectic and surprising, at times, range of tastes and genres. So from our earliest memories, music became the a mainstay of our lives.

My mom was the musical adventurer in our family, embracing and exposing us kids to a rich landscape that remains for us even though Mom and Dad are gone. I think I was the inheritor of Mom’s legacy, though, because my musical journey has always looked and looks much like hers in its breadth and diversity.

I will never forget a little road trip that Mom and I took just after U2’s The Joshua Tree was released. I loved U2’s 1983 album, War, but had been disappointed with everything before and after that until the release of The Joshua Tree. I was playing it and Mom asked me to turn it up.

I turned it up loudly enough so that she could hear the music and the words – and handed her the liner notes so she could read the lyrics – and as she listened and read, she smiled and said “I like this. It reminds me of the music I heard growing up.”

As I thought about it, I realized she was right about the striking similarity in tone and content between The Joshua Tree and the Depression-era music she’d grown up with that juxtaposed the discouragement with the harsh reality of life then with the hope and optimism of faith and belief in God and I understood that we both appreciated the album for the same reasons in different time periods.

One of her favorite tracks was “In God’s Country:”

As Mom’s vascular dementia, Lewy Body dementia and Alzheimer’s Disease progressed, I turned back to music for her to calm her, to comfort her, and to bring back happier times and memories of her life. And, as Mom took her last journey out of this life, I also turned to the same music for the same reasons.

(Ironically, so far, it is really hard for me to listen to all of Mom’s music yet without a lot of sorrow except in small bits and pieces here and there where I don’t have the opportunity to linger over it and have the flood of memories of our life through the years come over me like a tsunami wave.)

With technology, building a customized musical library for our loved ones suffering from Alzheimer’s Disease and dementias have never been easier. I will list a few low-cost and free options for building these databases for playback at any time.

spotify music application for PC and tabletsSpotify has one of the largest musical databases around and is an excellent choice. An unlimited subscription is only $4.99 a month and provides unlimited play time with no commercials (the free version gives you 10 hours of playback a month with a lot of commercials). The “shuffle” feature works well with mixing the music up and making each playback unique.

While Mom was alive, I had the unlimited subscription. I created several playlists for her that we listened to a quite a bit during the last year of her life. A lot of times I’d play them softly during her naps, which became more frequent and lengthy during the year.

But when she was awake, we’d talk about the music and occasionally, we’d sing along if we both knew the words or I would sing to her and she’d smile watching and listening to me.

If you’d rather build your own musical database, the easiest way is to convert YouTube videos to MP3 files and download them to your computer (I’d suggest storing them in your Music folder in the respective folders you’ll need to create for different types of music or artists to keep them organized and easily accessible), where they can be played back with Windows Media Player.

The steps to do this are fairly simple:

  1. Copy the YouTube video link you want to convert to an MP3 file
  2. Go to listentoyoutube.com and paste the link
    listentoyoutube-graphic
  3. Follow the directions for downloading the converted file
  4. Double-click on the file to play it in Windows Media Player

Once you’ve got Windows Media Player open, you can create playlists there and drag the MP3 files from your Music folders into each playlist. Then the next time you want to listen to a playlist, simply open Windows Media Player and click on the playlist. Windows Media Player also has a shuffle feature, which I would suggest using just to keep the order fresh and different each time a playlist is played.

So, if we haven’t already tried music as a comforting and soothing part of caring for our loved ones with Alzheimer’s Disease and dementias, then we need to implement it today. The benefits are not just to those we love because this is a wonderful way to connect and spend time together and intersperse some happy memories for us to carry with us when our loved ones are gone.