Tag Archive | Going Gentle Into That Good Night

The Importance of Fitness and Exercise for Our Loved Ones with Dementias and Alzheimer’s Disease

Exercise and fitness are important aspects of life and are beneficial for everyone, but particularly for our loved ones with Alzheimer’s Disease and dementias.

There has been significant research that shows that leading a life that is physically active and includes regular exercise can have a positive impact on overall health and well-being.

People who exercise regularly have improved levels of general cardiovascular health, stronger bones and, therefore, a reduced risk of osteoporosis. They also tend to sleep better at night and have improved strength and balance, which can reduce the fall risks for our loved ones with dementias and Alzheimer’s Disease.

Exercise has other wonderful health benefits too. Any level of regular physical exercise can have a positive impact on emotional health.

Exercise may help alleviate some of the symptoms of depression, a common condition in our loved ones with dementias and Alzheimer’s Disease, particularly in the early steps of the journey through these diseases.

Exercise can be beneficial with depression symptoms because it releases endorphins and other mood-enhancing brain chemicals. And even if our loved ones have reduced mobility or are in the middle-to-late steps of the journey through dementias and Alzheimer’s Disease, there are still ways to incorporate regular exercise into their daily routines.

Listed below are a few simple exercises for our loved ones with dementias and Alzheimer’s Disease.

Exercises Using A Chair

Seated exercises are ideal for our loved ones with dementias and Alzheimer’s Disease since they tend to have stability issues. Additionally, chair exercises are a great way to begin getting more physically active if our loved ones haven’t been for a while.

Seated exercises can help to build and maintain essential muscle strength and balance, but they are much less strenuous than standing exercises and reduce the risk of falls and/or injuries.

It’s important to use a sturdy chair with a back (I would recommend one that’s roomy with arms to prevent our loved ones from falling off sideways) for seated exercises and for us to be close by to assist if need be.

With our loved ones with dementias and Alzheimer’s Disease, it’s important to take the time to do these exercises at their pace. This includes taking the extra time to patiently coach – without expecting perfection in execution or repetition, with “good enough” done safely being “great.”

It would be ideal to begin each exercise session by breathing in as deeply as possible and then breathing out gently (if our loved ones are able to lift their arms to the side while doing this, it will help increase lung capacity, but if not, that’s okay).

We may have to coach and show our loved ones how to do this, doing the breathing exercises with them to encourage them to follow our example. Repeat this up to a maximum of ten times.

1st exercise (shoulder rolls): Lift the left shoulder up, then take a deep breath in. Breathe out as the shoulder drops. Then, lift the right shoulder up, then take a deep breath in. Breathe out as the shoulder drops. Alternate between the left and right shoulder up to ten times.

2nd exercise (neck strength): In the same sitting position, tilt the head back. Following the same breathing pattern as before, breathe in as the head is tilted back, then breathe out the head moves forward. Then, breath in as the head is turned to the left and breath out as the head is turned to the right. Repeat, alternating between back and forth and left and right up to ten times.

3rd exercise (sitting march): Pace can be as slow or fast as is comfortable. Lift the right knee up and breathe in; put that same foot down and breathe out. Repeat the same process with your left leg. Alternate between left leg and right leg up to twenty times.

4th exercise (leg stretches): Extend the left leg fully, breathing in as it’s extended, and breathing out as it is bent. Repeat with right leg. Alternate between left and right legs up to ten times.

5th exercise (ankles): Cross the left leg over the right leg, and rotate the left foot. Then, cross the right leg over the left leg, and rotate the right foot. Alternate between left and right foot, breathing rhythmically throughout, up to ten times.

Exercising to Music

In the early steps of the journey through dementias and Alzheimer’s Disease, our loved ones may be able to do slightly more strenuous exercises around the home, such as gardening, walking up and down the stairs or even dancing.

Exercising to music can make the activity a much more enjoyable experience. Since listening to music can also be beneficial in many ways for our loved ones with dementias and Alzheimer’s Disease, incorporating music into daily activities like exercise makes perfect sense in our overall care strategy.

This is a guest post by Helen Bowden, fitness trainer and nutritionist with experience in dementias and Alzheimer’s Disease

Making Life a Little Easier in the Care of Our Loved Ones with Dementias and Alzheimer’s Disease – Part 2

Jan6

This is the second in a series of posts that discusses everyday practical needs that almost no one ever talks about in providing care and making life easier for both us as caregivers and the loved ones with dementias and Alzheimer’s Disease that we care for.

In the first post in this series, we looked at how to make things easier day-to-day for our loved ones in the areas of eating and incontinence.

In this post, we’ll look at the areas of personal grooming and bathing in the journey through dementias and Alzheimer’s Disease with our loved ones.

The progressive neurological damage of these diseases can affect our loved ones in several ways in the areas of bathing and personal grooming, which may necessitate accommodations for them in these areas.

Before we discuss those in detail, it is imperative that we always respect the dignity of our loved ones with dementias and Alzheimer’s Disease, and that we give them as much autonomy and independence in all areas of their lives, including these, as is safe.

Dignity is not negotiable. Our loved ones deserve that at all times and we owe them that at all times. Being more dependent and less able to take care of themselves is hard enough on our loved ones, but to not respect and maintain their dignity is humiliating and devastating.

Our loved ones with dementias and Alzheimer’s Disease have been and are being robbed of their quality of life by an unseen or several unseen thieves in their brains. We should not be adding insult to injury by robbing them of their dignity.

Independence is also critical to the well-being of our loved ones. Safety concerns will, at times, limit full independence. However, that should be the only reason we curtail independence in any way.

Being a lot slower at doing things, being less than perfect at doing things, or forgetting how to do something but trying anyway should never be reasons why we take independence away from our loved ones. If we do, shame on us.

The requirements of making bathing – including washing hair -easier for our loved ones with dementias and Alzheimer’s Disease will change as these neurological diseases progress.

However, there are several things that we should be aware of throughout the course of these diseases:

Showering or a full bath every day is hard on and can damage the fragile skin of our elderly loved ones. A good rule of thumb is alternating showering or full bathing every other day with the equivalent of a sponge bath.
Harsh soaps and shampoos will also damage skin, including the scalp. Baby bath wash and baby shampoo is the gentlest option for bathing and shampooing hair.
Skin also dries out as our loved ones age – diuretics will make skin dryness even worse – so we should make sure our loved ones are lotioned up well each day with a good hydrating lotion.
Bathtubs for older folks are difficult to get in and out of and present a greater danger of falls.

If you are reading this with younger loved ones you may be caring for in the future or even with yourself in mind, please make sure that a first-floor bathroom has a walk-in shower (ceramic or fiberglass frame – a metal frame can cut), which can be adapted for even greater safety using assistive devices.

When staying in a hotel, be sure to request a handicapped room since these have walk-in showers (which are even wheelchair accessible, if needed).
Make sure the bathing area is the warmest room in the house. As our loved ones get older and as dementias and Alzheimer’s Disease progress, sensitivity to cold is even more pronounced.

If there is no additional heater built into the bathroom, use a space heater. About 15 minutes before bathing time, turn the heater on and close the door. This will ensure that the bathroom is at a comfortable temperature by bath time.
Have everything you need for bathing, personal grooming, and dressing ready before starting the bathing process.

This makes the process go more smoothly and efficiently and it ensures that we don’t have to leave our loved ones unattended – with the possibility of falls and/or injury – during the process.
Water temperature is crucial and we must ensure that it’s not too hot or too cold. Run the shower (or sponge bath water) until it is on the warmer side of lukewarm as a general guideline.
The sensation of water pouring down from a shower can sometimes be frightening for our loved ones with dementias and Alzheimer’s Disease as they approach the middle and late steps of these diseases.

My personal theory is that it’s a combination of three things: a heightened sensitivity to change (resulting in confusion and anxiety), the suddenness of it, and the feeling of being wet.

We will notice that some days showering is not an issue and other days it’s a huge issue.

On the days that it’s a huge issue, it’s important that we don’t force our loved ones into a situation that is frightening for them, because this will increase fear, anxiety, confusion, and disruptive behavior.

Instead, we should opt for a sponge bath or cleanup with adult washcloths and try again another day.

As far as bathing and shampoo products go for shower days, I recommend Johnson’s Moisture Baby Wash and Johnson’s Baby Shampoo.

While there are generic brands of baby body washes and baby shampoos, I found the quality inferior (i.e., they were more watered down) to Johnson’s baby products.

Since these are designed for delicate skin, they meet the bathing and the shampooing needs of our older loved ones with dementias and Alzheimer’s Disease as well.

Additionally, the shampoo won’t irritate the eyes if it drips into them. Since following directions – such as keeping eyes closed – is harder for our loved ones to do or sustain if they are able to do it, this ensures that no harsh chemicals get into their eyes while washing their hair.

For non-shower days, I recommend using disposable adult washcloths. Adult washcloths are large and premoistened, usually with aloe added, and can be used very effectively to clean up. They are not flushable.

Adult washcloths can be bought inexpensively in bulk at warehouse clubs like Sam’s Club, Costco, and BJ’s (online or in-store).

A product that many hospitals use for bathing that I do not recommend is no-rinse body wash/shampoo. One reason I don’t recommend no-rinse body wash/shampoo is that I don’t find that it does a good job of cleaning and it leaves a slight residue on skin and hair. The other reason I don’t recommend no-rinse body wash/shampoo is that it dries the skin and hair out, which makes the fragile skins of our elderly loved ones with dementias and Alzheimer’s Disease even more dry and fragile.

There are several things that we’ll need to do to ensure the bathroom and shower is safe to prevent falls for our loved ones.

Most modern bathroom floors are either ceramic tile or linoleum. Both of these surfaces are very slippery when they’re wet, so we want to ensure that the floor has an adequate amount of non-skid covering to ensure the safety of our loved ones when they are wet.

Rugs and oversized bath mats are the easiest and least expensive way to cover the bathroom floor adequately. It’s also easy and inexpensive to ensure that they are non-skid by applying non-skid tape to the back of the rugs or bath mats. The best product I found for this is Duck® Brand Hold-It for Rugs™, which can be purchased through many venues online or at home supply stores.

Non-slip tub/shower mats with suction cups are the usual recommendation to keep our loved ones with dementias and Alzheimer’s Disease from slipping and falling in the shower. However, my personal experience with these is that with most shower floors, the suction cups don’t adhere well and the mat moves around easily.

So I don’t recommend these for the shower floor. Instead, I recommend non-skid strips or tape designed specifically for the shower.

The entire floor of the shower does not need to be covered nor do the strips or pieces of tape have to be right up against each other (gaps between them are fine as long as they are not wide enough to cause a slip or fall) , but you do want the primary walking surface to have enough skid-resistant strips or tape in place to ensure safety.

Like the non-skid tape for the rugs, this is very inexpensive and provides the maximum safety for our loved ones and can be purchased online at Koffler Sales Company. There is no quality difference between the 3M™ and KSC brands, but because 3M™ is a more-recognizable brand, the price for their products is higher.

As far as the safety of our loved ones with dementias and Alzheimer’s Disease goes in the shower itself, there are two additions that I would highly recommend.

One addition is a safety grab bar. There are two kinds of grab bars for showers on the market. One kind requires no hardware to install it because it uses a suction-cup locking system. The other kind requires hardware to install it (and, if you’re not handy, may require a professional to install it).

Although the easy-to-install grab bar is less expensive overall, I don’t recommend it for our loved ones with dementias and Alzheimer’s Disease. Because it uses a suction cup to hold it to the shower wall, with enough weight or time, it could become detached and cause a fall.

Therefore, I recommend the grab bar that uses hardware to attach it to the shower wall.

Although this presents work and a possible upfront cost for installation, it gives our loved ones the extra measure of safety for fall prevention.

The other addition that I recommend is a portable shower chair.

Built-in shower seats are often small and in one corner of the shower, which doesn’t facilitate easy showering.

However, the main concern with built-in shower seats for our loved ones is that they are slippery and the fall/injury potential is great.

Shower chairs allow our loved ones with dementias and Alzheimer’s Disease to sit either during the shower or when they get tired during the shower.

For the most comfort, I recommend a shower chair with a back and without arms.

The shower chair should be placed in the shower near the grab bar.

We should be on hand while our loved ones are sitting in the chair and we should always assist them – directing them to use the grab bar to help – getting up and down out of the chair. While the shower chair’s feet have rubber grips, the chair will move when our loved ones are standing up or sitting down.

In the next post in this series, we will look at how to make life easier in the areas of mobility and functionality/accessibility for our loved ones with dementias and Alzheimer’s.

“You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease” – Chapter 3 Excerpt

Dec21

This is the fourth in a series of posts that includes chapter excerpts from You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.

This post includes an excerpt from chapter 3, which comprehensively looks at the the step in the journey through dementias and Alzheimer’s Disease where communication difficulties arise. It discusses the kinds of communication problems that arise and how we as caregivers can help our loved ones bridge those gaps.

This series begins with the forward to the book and an explanation of why I wrote this book and why you should read it.

The steps in the journey through dementias and Alzheimer’s Disease are presented sequentially in the order in which they actually appear in the course of these neurological diseases.

There are no other books that literally walk through each step in sequential order as they emerge in the journey through dementias and Alzheimer’s Disease.

Additionally, there is no other book that discusses:

The process we as caregivers acknowledge each new step – there is an acceptance period that we have to go through
The process we use to guide ourselves and our loved ones with dementias and Alzheimer’s Disease through the recognition phase of each step
The concrete, loving, and practical information on how we should respond and how we can help guide our loved ones’ responses

These are the things that make You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease unique and stand alone in the plethora of books about dementias and Alzheimer’s Disease.

Excerpt “Chapter 3: “’Don’t Think I Know What to Read or Write or Say'”

“As more cells die, the functions that these areas of the brain control become more profoundly affected. Language function is controlled in a deeper portion of the temporal lobe, so in the case of just Alzheimer’s Disease, communication problems might not show up for a while.

However, if our loved ones are suffering from other dementias, such as vascular dementia which causes clusters of cell death through the brain, even the innermost parts, because of a stroke or chronic small-vessel ischemia (usually the result of mini-strokes or transient ischemic attacks, also known as TIA’s), then communication problems may occur sooner.

Regardless of how long it takes, communication problems are the third definitive step in the journey, whether it’s a short step or a longer step.

Communication problems in dementias and Alzheimer’s Disease include fall under the general term of aphasia.”

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

Dec4

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

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

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

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

A great aid to help keep clothing clean is an adult clothing protector.

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

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

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

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

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

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

Not all adult underwear is created equal.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nov24

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

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

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

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

Instead there was gratitude.

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

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

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

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

Did they get tired? Yes.

Did they get frustrated? Yes.

Did they get angry? Yes.

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

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

Did they try? Absolutely.

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

Why?

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

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

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

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

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

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

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

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

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

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

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

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

A Little Appreciation Expressed Goes A Long Way to Let You Know That Your Efforts Are Not For Nothing

Sep10

As a dedicated and passionate educator, advocate, researcher, writer, counselor, supporter, encourager, and someone who has walked firsthand through the journey of dementias and Alzheimer’s Disease with a loved one who spends a lot of waking hours – as well as many hours when I should be sleeping – devoted to making sure there is no lack of practical and usable information and resources available to those who are currently going through or will be going through this journey with their loved ones, it can often seem, with very little tangible feedback (I know people are reading the blog), that I’m wasting my time and just talking to myself.

But every time I start wondering “What’s the point? Nobody cares anyway.,” I remind myself that it’s worth it if only one other person on the planet obtains the help, the information, the encouragement, the empathy, or the “one person besides me gets this” they need.

On the other hand, it is encouraging once in a while to have someone tell you that the work you’re doing is appreciated. It means as much to have a fellow blogger whose own work is appreciated to consider what you provide a source of inspiration.

(None of us is in this for recognition and praise. We’re doing it because we’ve been there and we know what you’re dealing with if you’re there now or what all of those of you who will be dealing with dementias and Alzheimer’s Disease in the future will face.

We know what it’s like to have no information, no support, no help, no nothing and to have to figure out on our own. Our efforts are to not waste the pain, but to pay it forward so that others don’t have to face what we faced.

This is a labor of love and service for the rest of the human race that we are dedicating to providing to each of you.)

I was nominated for the “Very Inspiring Blog Award” by Kay Bransford who blogs in Dealing with Dementia about the journeys with her dad (now deceased) and her mom (living and progressing) through dementias and Alzheimer’s Disease.

It’s nice to be appreciated and I would like to repay the compliment to several other bloggers. The rules are simple:

Thank and link to the amazing person who nominated you.
List the rules and display the award.
Share seven facts about yourself.
Nominate 15 other amazing blogs and comment on their posts to let them know they have been nominated.
Proudly display the award logo on your blog and follow the blogger who nominated you.

Seven facts about me:

My parents were both in the medical field, and although I excelled in and loved the biological sciences (especially genetics), to my dad’s dismay, I didn’t choose the medical profession as my career. Armed with a humanities degree (with practical minors in math and accounting) and a concrete plan to start my career in technical writing, I morphed into a full and expansive career in information technology.
My mom developed dementias (vascular and Lewy Body) and Alzheimer’s Disease right before my eyes, but I didn’t have the knowledge and the resources to put it all together until it was no longer undeniable. I don’t ever want there to be another person in the world who has to go through the rapid and, sometimes, hard catch up the way I did.
I am thankful that I was able to fulfill the circle of life for my mom, even though I made mistakes along the way, and, to the best of my ability, I was able to fulfill my promise to her that I would do everything within my power and control to ensure that her “second childhood was better than her first childhood.”
Being able to provide hands-on, side-by-side care for my mom – and to walk beside and with her every step of the way to the end – was a gift from God for which I am thankful. I’d do it all over again in a heartbeat.
I learned things about myself I needed to know as I walked the journey through dementias and Alzheimer’s Disease with my mom. I learned lessons that I could not have learned any other way.
In the course of the journey – and beyond – I changed and am continuing to change for the better and matured and continue to mature into a kinder, gentler, more patient, more forbearing, more forgiving, more understanding, and more compassionate version of myself. Although I still have miles to go before I sleep, this much-needed and long-overdue upgrade, with its fixes, patches, and, in some cases, start-from-scratch recoding put me further down this road of change than I was when I started.
God gave me the gift of being able to write. If there’s praise to be given, it belongs to Him. I am responsible for using this gift in a manner that is worthy of the One who gave it to me. To the best of my ability, I strive to do that with every word that I write wherever I write it.

The blogs I nominate are:

My Neighbor Miss D – Miss D’s neighbor Nancy blogs about dementia, elder abuse, and the importance of neighbors caring for neighbors who are alone in their journeys through dementias and Alzheimer’s Disease

Lewy Body Dementia: Ten Plus Years of Care, Commentary, and Cleaning Up. – Joy Walker offers humorous and information commentary on caregiving and Lewy Body dementia

The Long and Winding Road: A Journey Through Alzheimer’s Disease – Ann Napoletan blogs about her journey as a caregiver with her mom through Alzheimer’s Disease and also works as an advocate for Alzheimer’s Disease research

Dementia and Dominoes – Pam Stephan gets two nods in my nominations and this is the first, where she shares memories of her dad, who has dementia, and caregiving challenges and solutions

Dining with Dementia – Pam Stephan’s blog with fast and easy recipes for dementia caregivers and their loved ones

The Daily Goodbyes – Cia blogs about her life with her father, who has Alzheimer’s Disease

D 4 Dementia – Beth Britton is a UK blogger providing advocacy and information for caregivers

My Demented Mom – Compelling blog that chronicles the author’s mother’s journey through dementia to death and offers great information for others on this journey

Momma and Me – Arlene shares the story of her mom’s journey through Lewy Body dementia with compassion, humor, and wisdom

Portrait of a Morbid Optimist – Katryna Ormiston’s beautiful blog – her tagline is perfect: “finding love in death” – about caring for her father through his journey with dementia

Let’s Talk About Family – Lori’s blog journals the ups and downs of family life as children become caregivers for their parents with dementia

Story & History – Theresa Hupp’s fascinating combination of her family’s, including dementia, and her journey through life and the history that accompanies it appeals to the history lover in me

Reflections on Dementia, Caregiving, and Life in General – Written by a caregiver in Singapore, this blogger offers a personal, yet international, perspective on dementia and caregiving as she goes through this journey with her mom

Creating life with words: Inspiration, love and truth – Kate Swaffer’s blog is a must-read blog on dementia, family, and hope

Memories From My Life – Pat White’s blog about caring for her mom since her Alzheimer’s Disease diagnosis in 2007 is a topical, heartfelt, and compassion story of their journey together

Thank you, Kay, for nominating me. I appreciate it, my friend and fellow traveler on the journey through dementias and Alzheimer’s Disease.

Eliminate Behavioral and Verbal Hand Grenades in Our Relationships with Our Loved Ones with Dementias and Alzheimer’s Disease – Part 2

Sep1

In “Eliminate Behavioral and Verbal Hand Grenades in Our Relationships with Our Loved Ones with Dementias and Alzheimer’s Disease – Part 1,” we looked at the first six of the 12 verbal and behavioral hand grenades that psychoanalyst Trevor Mumby has identified that hamper and inhibit communication with our loved ones with dementias and Alzheimer’s Disease.

As I stated in the first post, these 12 verbal and behavioral hand grenades should be eliminated from all our communication with all humans, because although our loved ones with dementias and Alzheimer’s Disease will visibly and negatively react to each of these hand grenades while non-neurologically-impaired people may not, we still damage and destroy relationships when we use them.

The last six verbal and behavioral hand grenades of communication that Dr. Mumby has identified follow below.

Undermining.

Slowly and insidiously tearing people down from the foundational level with regard to their abilities, their intelligence, their senses of self, their independence, and their character is devastating whether those people have dementias and Alzheimer’s Disease or not. It is literally the equivalent of ripping people apart one piece at a time until there is nothing whole left.

This verbal and behavioral hand grenade is especially destructive because it is thrown subtly at, in the shadows of, and behind the backs of its targets.

It is disguised in whispering about and frequently looking at the person it’s aimed at. It is disguised as joking with the person it’s aimed at, yet the words are always putdowns and the laughing is always at that person’s expense. It is disguised as help for the person it’s aimed at, but the tone and the words are anything but helpful.

For our loved ones with dementias and Alzheimer’s Disease, this hand grenade has an even more profound effect. Already aware of something being wrong, but not knowing what (I discuss this step of the journey in detail in Chapter 2 of You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease), our loved ones are especially sensitive to their deficits and undermining them verbally and behaviorally adds to the distress that they are already experiencing. This can lead to emotional outbursts, intense agitation, and even violent behavior.

Additionally, if our loved ones with dementias and Alzheimer’s Disease also are in the paranoia step of the journey (this step is thoroughly explained in Chapter 5 of You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease), undermining them verbally and behaviorally feeds that paranoia and can lead to escalated anger, fear, and physical confrontation.

Pessimism.

We all struggle with pessimism in our lives from time to time and it can be difficult, if not impossible, for it not to spill over into human relationships. That’s normal. However, pessimism that is always expressed verbally and behaviorally is a hand grenade.

People like me, who see the glass as always being half empty, struggle more than anyone else with this hand grenade. From my earliest memory, I have always expected the worst – because if you’re at the bottom, you don’t have anywhere to fall, but if you’re way up at the top, the fall to the bottom is going to hurt a lot, if you survive it – and if anything other than that happens, then so be it.

I’m a pragmatic person, so I tend to keep my emotional hedges low enough to the ground so that I don’t spend my whole life on a crazy roller coaster with huge ups and huge downs. I could not survive that.

I generally keep my pessimistic tendencies buried deep within because it’s my perspective and one that I don’t want to color anyone else’s perspective with. If someone’s happy or enthusiastic or even just okay, then who am I to spoil that? I don’t want to, so I make a conscious effort not to.

(The few times in my life when my pessimism has gotten bigger than me and spilled out into my other relationships, the responses have tended to be brutal in their condemnation or dismissal accompanied by unsolicited “expert” solutions that I’m apparently too stupid to see on my own.)

I will probably never lose my pessimistic perspective in this lifetime because it’s hardwired into who I am.

However, just because I naturally possess a verbal and behavioral hand grenade doesn’t mean that I have to use it. I work very hard not to use it and it’s one of the big battles of my life to put the brakes on something that is naturally part of the way I think and am, but I do it because I know it’s the right thing to do and because I don’t want to hurt and upset other people.

It can make me unknowable at times. I hide much, if not all, of what’s going on inside myself and I do my best to let people be where they are and express that without me ever saying anything negative. But I also share next to nothing about myself because that’s the only way to keep this hand grenade in check.

For our loved ones with dementias and Alzheimer’s disease, the verbal and behavioral hand grenade of pessimism can be even more potent than with people who don’t have these neurological diseases. It can lead to severe depression, a loss of all communication, and eventually a loss of the will to live.

Ignoring.

This verbal and behavioral hand grenade marginalizes people and eventually makes them invisible. It is characterized by not listening and non-responsiveness, either in vagueness or silence, in verbal communication. Behaviorally, it is manifested by acting as those someone who is in the room isn’t.

We’ve all been in situations where we’ve been ignored both verbally and behaviorally. It’s dehumanizing, it’s disrespectful, and it’s painful. Most of the time when we experience this hand grenade, we simply want to really disappear and get out of the situations where we’ve already become marginalized or invisible because we already aren’t there.

When our loved ones with dementias and Alzheimer’s Disease are ignored verbally and behaviorally, we are telling them that we don’t respect them, they’re already gone as far as we’re concerned, and, most importantly, that they don’t matter.

The most obvious manifestation with our loved ones will be people talking around them, making decisions for them, and not including them at all.

This is a dignity issue (Chapter 12 of You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease comprehensively covers dignity, independence, honor, and respect).

It is our responsibility as team leaders for our loved ones with dementias and Alzheimer’s Disease to ensure that they are not ignored by anyone. That means including them in all conversations and in all decision processes. That means listening to them with undivided attention and working to communicate with them (Chapter 3 of You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease is a must-read for maximizing back-and-forth communication) so that they are heard and understood.

Need to control.

The right tenor of human relationships is to guide where we can, advise when we’re asked, and contribute our strengths, when we are invited, to decision processes. It is not to force (control) or insist (control) or make (control) anyone else do or say anything.

The verbal and behavioral hand grenade of needing to control everything and everybody comes from fear in the person doing it. The effects of someone who needs to control are never good.

For those of us without dementias and Alzheimer’s Disease, someone trying to control everything will be met with resistance, anger, rebellion, and, eventually, total disconnection. Taking choice away from people – which the need to control does – takes life itself away.

For our loved ones with dementias and Alzheimer’s Disease, someone who needs to control everything will bring the same responses, except that the behavior will be different. Emotional outbursts (anger, screaming, yelling, crying) will be continual. Agitation (pacing or restlessness) will be on steroids. Wandering will increase and “escapes” will be frequent.

Wandering and escapes are particularly scary because they present the risk of mortal danger to our loved ones. Therefore, if we struggle with this hand grenade, it might be fortuitous to understand that if we use it, we are potentially putting a live or lives at risk. I wouldn’t want that on my conscience.

Questioning.

Have you ever had someone ask you repeatedly – after you’ve answered “Yes” – “Are you okay?” What was your response? Have you had someone ask so many questions that it seems invasive? What was your response?

Even though I just asked four questions, I crafted them in such a way to evoke you identifying with them, instead of getting annoyed by them (which is generally what our response to the two scenarios above would be).

Constant questions mean there’s a lot of uncertainty. For our loved ones with dementias and Alzheimer’s Disease, the reality is that there is already a lot of uncertainty in their own minds. A constant flow of questions will likely enhance that uncertainty and cause confusion, followed by irritation.

The other aspect of questioning as a verbal and behavioral hand grenade is that of someone questioning everything another person does. This is commonly known as “second-guessing.”

What second-guessing says is that the person who is doing it has no trust, no confidence, no faith in anything the person they’re doing it to says or does. For those of us without these neurological diseases, this is a morale-killer, at best, and an anger-generator, at worst.

For our loved ones with dementias and Alzheimer’s Disease, the effect is even stronger. Already wrestling with confusion and a sense of not quite knowing things in context, second-guessing confirms their worst fears. The result is anger, more fear, increased hesitation, and eventually complete withdrawal.

Being irritating.

This verbal and behavior hand grenade is doing and saying things that we are aware irritate other people, but we do and say them anyway.

This hand grenade is both disrespectful and selfish. People who use this hand grenade say things like “Well, that’s just me” or “Take me or leave me” when they are called out for using it. The implication is that they are not going to change anything about themselves to accommodate or make things easier for everyone else. It expresses the height of both self-conceit and self-importance.

This hand grenade can be even harder on our loved ones with dementias and Alzheimer’s Disease, since thoughtless words and actions are much more difficult to understand and process. Our loved ones will take things much more personally because they don’t have the neurological executive functioning to see them for what they are and to ignore them or recover from them quickly.

This can lead to anger and increased agitation, as well as withdrawal as a protective gesture.

I sincerely hope this series has been beneficial and helpful. We all can learn and change as we examine our own words and behavior to see which hand grenades we might have and not only will eliminating them improve our communication with our loved ones with dementias and Alzheimer’s Disease, but every other human relationship we have and will have.

It’s that important.

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

Aug17

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Aug14

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

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

For that, I’m thankful.

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

Jul31

In the post “The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed what home health care is, when it should and can be used, and what services it provides.

In this post, we will discuss what palliative health care is, when and why it should and can be used, and what services it provides at home for our loved ones with dementias and Alzheimer’s Disease.

Although, as any caregiver can tell you, dementias and Alzheimer’s Disease are always on the radar with our loved ones who have these neurological diseases, there are often other health-related and age-related illnesses that our loved ones are also dealing with, especially if they’re elderly.

Home health care services are available – and should be used – when there is an acute medical condition that needs to be monitored and resolved (if possible) after our loved ones are discharge from a medical facility. Examples of acute medical conditions can include hard-to-manage/uncontrollable blood pressure, diabetes, life-threatening cardiac events, pneumonia, embolisms, strokes, and joint replacements.

As soon as the acute medical condition no longer exists, home health care services are no longer available. However, most home health care agencies have an intermediate health care option between home health care and hospice (end-of-life, with very specific criteria, which we’ll discuss in the next post) care.

That intermediate option is palliative health care at home.

Palliative health care provides home health care services when someone has a serious long-term or terminal illness, but death is not imminent or the prognosis is longer than six months.

Palliative health care provides life-prolonging and curative treatments – just as home health care does – as well as providing pain management and symptomatic relief.

Palliative health care offers the same interdisciplinary team and services that home health care offers: nurses (visits are usually one a week), physical therapists, occupational therapists, speech therapists, home care aides to help with daily activities like bathing, if necessary, and 24/7 nursing/medical support.

Like home health care, this palliative health care team’s manager is the nurse who coordinates and collaborates with the primary care physician and other palliative health care staff.

Palliative health care is an excellent bridge that gives us and our loved ones time to find, consider, and agree on options for care without being rushed into making a decision without having all the facts, discussing and understanding them, and being ready to live (or die) with them.

The goals of palliative health care are different than home health care. With the knowledge that death is the eventual outcome, the emphasis of palliative health care is in the following areas:

Comfort and relief from physical symptoms like pain, nausea, fluid retention, and shortness of breath
Communication and coordination of issues, treatments, and needs among doctors (although at this point, I’d personally recommend – and this is what Mom and I agreed to – just working with a primary care physician), other palliative health care staff, our loved ones with dementias and Alzheimer’s Disease and us
Time to pursue treatment options, if wanted, and time to prepare for death (discussing death, ensuring that all “loose ends” are tied up, meeting personal goals, and saying goodbye)

Since most home health care agencies have a palliative health care program, the transition is easy – either we and our loved ones or the home health care nurse will ask the primary care physician to write an order – and seamless – the same team of nurses and therapists continues throughout the palliative health care phase of care.

Some palliative health care programs have social workers and clergy on staff to help with any community-based services that may be needed in the home and to offer bereavement counseling.

The palliative health care program that Mom was in did not have those services, but we were self-sufficient in terms of a social worker and we had enough spiritual support from our close-knit group of long-time friends within our church family.

Palliative health care should be, at some point, a part of the care we ensure is in place for our loved ones with dementias and Alzheimer’s Disease.

Most people don’t even realize this option is available – and our loved ones do not have to have been receiving home health care services to receive palliative care – and that is one of the reasons I wanted to explain what it is, what is does, and why it’s a crucial part of the team approach to care that we lead for our loved ones.

In the next post, and the last one in this series, we’ll discuss hospice care.

This is a guest post by Helen Bowden, fitness trainer and nutritionist with experience in dementias and Alzheimer’s Disease

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this:

Rate this:

Share this: