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.

Eliminate Behavioral and Verbal Hand Grenades in Our Relationships with Our Loved Ones with Dementias and Alzheimer’s Disease – Part 1

Aug29

Communication – verbal and behavioral – is the cornerstone of human relationships. It turns out, as all of us have no doubt discovered along the way, that we humans aren’t all that good at successfully communicating with each other all the time.

Admittedly, some of us are better – but not always – at communicating well and consistently with other humans than others of us are.

Our propensity toward communication difficulties leads to a lot of problems in the normal course of our relationships with others. Misunderstandings develop. Feelings get hurt. Relationships are ripped apart irreparably, at least for this lifetime.

However, for our loved ones with dementias and Alzheimer’s Disease, where executive function, cognition, and understanding are compromised by neurological deterioration, these communication difficulties are even more devastating and can often lead to extreme agitation, volcanic emotional outbursts, and inappropriate behavioral manifestations.

Psychoanalyst Trevor Mumby, who has spent his career looking for ways to communicate more effectively with those who have dementias and Alzheimer’s Disease, has identified twelve areas of communication that are verbal and behavior hand grenades that can create emotional havoc with our loved ones with dementias and Alzheimer’s Disease.

I submit that if we eliminated these communication hand grenades in all our relationships, we’d be taking a huge step forward in better communicating with other human beings.

In this post, we’ll look at the first six verbal and behavioral hand grenades of communication that we need to eliminate, and in the next post, we’ll look at the last six.

Being opinionated.

Nothing gets emotional upheaval going in all of us like someone who is overbearing and knows everything about everything and will not stop pushing their opinions and their agendas over and over and over ad nauseum until everyone agrees (or just disappears by folding up within themselves and shutting down).

For our loved ones with dementias and Alzheimer’s Disease, this communication hand grenade will evoke strong negative emotional and behavioral responses, ranging anywhere from being emotionally inconsolable to being physically violent.

Interrupting.

Even in normal communication, constantly being interrupted or cut off while trying to express something completely is aggravating.

I tend to take longer, verbally, to express myself because I’m not a natural ad hoc speaker and it’s out of my realm of capability and temperament to think out loud, process and talk concurrently, and be engaged in unedited conversation.

I find myself frequently on the receiving end of being interrupted because I pause a lot to try to find the right word, tone, meaning before I say it. My response to interrupting is to stop talking and avoid verbal communication with people I know will interrupt me.

In this area, I have a strong affinity with and empathy for our loved ones with dementias and Alzheimer’s Disease who, because of often-extensive neurological damage to the speech and hearing pathways in the brain, struggle to understand what is being said and how to respond to it (I discuss understanding and successfully navigating communication difficulties comprehensively in Chapter 3 of my book, You Oughta Know: Acknowledging, Recognizing, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease).

As a result, exaggerated pauses in speaking occur and it’s almost second-nature to interrupt and fill in the missing words and/or thoughts we think our loved ones are trying to say. And this can create extreme agitation and emotional upset because we are likely wrong in what we conclude they are trying to communicate and because we’re both being disrespectful to and taking away independence from our loved ones with dementias and Alzheimer’s Disease.

Provoking.

This hand grenade can be both verbal and behavioral. Some people are unaware that they are provocating, while other people revel in it. My daddy, who didn’t like it any more than I do, used to call it “getting a rise out of someone.”

Verbal provocation is a conscious hand grenade. It is characterized by insistent, persistent, and increasingly abusive language toward someone else with the intended results being anger and fighting. Yep, there are actually people – and we all know them, unfortunately – who really enjoy doing this.

Behavioral provocation is usually an unconscious or unknown hand grenade. We all have things that we do and habits that we have that get on someone else’s last nerve, but oftentimes we have no idea that we’re provoking them in the process.

For our loved ones with dementias and Alzheimer’s Disease, verbal and behavioral provocation can be a communication powder keg. We need to remember that the neurological damage in these diseases affects perception, reasoning, and understanding profoundly. We also need to remember that having dementias and Alzheimer’s Disease increases the fearfulness of our loved ones.

Therefore, verbal provocation, which can be threatening and scary to those of us who do not have dementias and Alzheimer’s Disease, can create terror in our loved ones who do. And we all know that fear generates that adrenaline rush known as the “fight-or-flight” response.

Whichever of these gets triggered in our loved ones will be exaggerated. Evidence of this response can include frequent and uncontrollable agitation, constant pacing, increasing wandering with the intent of escape (outdoors), or fighting (hitting, biting, etc.) when they are provoked.

Behavioral provocation will most likely evoke anger and impatience in our loved ones with dementias and Alzheimer’s Disease. This can escalate to physical violence in an attempt to stop the provoking behavior.

Contradicting.

Another hand grenade is the habit of disagreeing with, arguing with, and contradicting everything the other person says. Part of what is behind this verbal and behavioral hand grenade is the need to be right all the time (insecurity and/or inflated ego are at work).

We all know people like this and I personally steer clear of them as much as I’m able. When I have to be around them, I get quiet and stay quiet and try to escape them as quickly as possible.

However, the hand grenade of contradiction is very damaging to our relationships with our loved ones with dementias and Alzheimer’s Disease. Remember, these diseases, by their very nature, take sure knowledge away from our loved ones. It causes them to be tentative about everything because they don’t remember what they don’t remember.

Contradicting them on everything only adds to the tentativeness, the hesitation, the confusion and will eventually cause our loved ones to shut down and stop communicating altogether (you’ll note that this is not all that different than what I think most of us who don’t have dementias and Alzheimer’s Disease do only when we are around people who contradict us all the time) with everyone.

Expecting gratitude.

Let’s face it. Most of life is a pretty thankless task. However, part of human relationships is doing what you are able for others when you are able because it’s the right thing to do.

If we expect gratitude all the time, then the motive behind what we do is selfish and self-centered: we want recognition, we want praise, we want our egos stroked. In essence, our actions and words are all about us and never about those for whom we do or give them.

For people who expect the limelight all the time for all they do and say, we find that they will stop doing for and saying things to the people who don’t feed their egos with lavish praise and fawning gratitude. They basically just cut those people out of their lives.

Not expressing gratitude consistently among our loved ones with dementias and Alzheimer’s Disease is part of the neurological disease process. Remember that the brain is where the concept of thankfulness and gratitude are formed. As the brain deteriorates, concepts and ideas, which are high-level executive functioning, begin to disappear to one degree or another.

If we are expecting gratitude all the time, will we cut our loved ones out of our lives because they’re not meeting our expectations? Sad to say, this does happen. But shame on us if this is our motivation and our response.

Talking loudly.

Somehow all of us humans are innately wired to believe that if we just say something in a louder voice, it will be understood better by the person or people we are talking to.

Because my mom had a severe hearing loss most of her life, I saw this up close and personally with people who didn’t know her. Early in our childhoods, Mama explained that when people were talking to her she read their lips and that slowing down just a bit and enunciation, not volume, was the key to her being able to understand what was being said if she couldn’t hear it.

Even before her journey with dementias and Alzheimer’s Disease, she didn’t like to be around people who always talked loudly or people who talked loudly to her as a way of communicating with her.

And I’ve never been able to handle loud talkers either. It literally hurts my ears and I physically need to get away as quickly as I’m able when I’m around people who normally talk in a loud voice.

The same is true for our loved ones with dementias and Alzheimer’s Disease (I’ve often wondered how much the double whammy was for Mama to have both a profound hearing loss and vascular dementia, Lewy Body dementia, and Alzheimer’s Disease – I really can’t imagine).

Volume in speech will not help them understand more or better what our loved ones have already lost in understanding and comprehension because of dementias and Alzheimer’s Disease. What it is most likely to do instead is make them fearful because they know the noise is loud, but they don’t know why.

As we talked about before, fear can produce intense agitation, continuous pacing, frequent wandering to escape, and, at its worst, physical violence in our loved ones with dementias and Alzheimer’s Disease.

These are the first six verbal and behavioral hand grenades that we need to eliminate in our relationships with our loved ones with dementias and Alzheimer’s Disease. The reality, though, is that we need to eliminate them in all our human relationships, so everybody on the planet could benefit from reading this series.

In the next post, we’ll discuss the last six verbal and behavioral hand grenades we need to eliminate.

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

Aug28

I went to a metropolitan senior center as an observer for an Alzheimer’s Association class today that was eye-opening as far as how few of the seniors in the class knew and understood what legal, medical, and financial documents they needed to have in place in the event that they needed help or could not take care of their own affairs in this area.

The questions they asked, which I was able to help answer, reminded me that I can’t overemphasize the explanations of these documents, the reasons why they are needed, and that the time is now for everybody, regardless of your age and health, to have these in place.

All of us need to be preparing in advance for the possibility that something – whether it’s Alzheimer’s Disease, dementias, other life-threatening illnesses, or simply time and chance – could suddenly and dramatically or slowly and insidiously render us incapable of taking care of our own affairs.

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

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

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

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

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

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

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

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

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

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

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

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

This, in my opinion, is the last act of kindness I can do in this physical life. It is also one of the greatest.

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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

Jul21

Part of the caregiving team we will lead for our loved ones with dementias and Alzheimer’s Disease will – and should – include home health care, palliative care, and hospice. It is, therefore, important to understand what each of these services provides and under what circumstances.

Home health care is generally provided – if it is not offered, then we should request it as part of the discharge process – after our loved ones are hospitalized for an acute serious illness that is causing systemic problems (strokes, heart disease, hard-to-manage blood pressure, embolisms, and continuously low oxygen saturation levels are some examples of acute serious illnesses) or surgery that requires follow-up monitoring and wound care.

What services are included in home health care?

Nurses, who function as case managers, will come to the home from one to three times a week (depending on the severity of need) to do a thorough examination of our loved ones, provide wound care (if applicable), and serve as the liaison with both the primary care provider for status updates and medication changes (if needed) and with other services included in home health care.

I strongly advise, especially for our loved ones with dementias and Alzheimer’s Disease, to request that the same nurse – if he or she is a good fit – do all the home visits to ensure continuity and to create comfort and trust for our loved ones. If the nurse is not a good fit, then we should request a change. Generally, it will be obvious on the first visit.

Physical therapy, occupational therapy and speech therapy are also services offered by home health care. At the very least, I would suggest taking advantage of physical therapy and occupational therapy. For our loved ones who have suffered strokes and are recovering, speech therapy should be included as well.

Hospitalizations always leave our loved ones weaker physically than they were before being admitted, because with acute illnesses and surgeries, they usually spend a lot of time lying in bed and are not as physically active. In the case of strokes, motor skills are usually severely affected on one side of the body, although in some cases both sides are affected (depending on where the stroke originated in the brain).

Physical therapy will begin in the hospital in some cases, such as with strokes or joint replacements, but most hospitalizations will not include this as part of treatment.

Therefore, it’s vital to our loved ones’ health to use the physical therapy services provided by home health care to regain strength and to keep them as mobile as possible for as long as possible. In the case of strokes, it’s imperative to continue physical therapy as part of the recovery at home.

Physical therapists will visit the home, on average, twice a week and will help us and our loved one with exercises and activities to do on a daily basis to continue strengthening and improving balance, mobility and motor skills. They will also order any mobility equipment – if we don’t have it already – such as walkers and wheelchairs, if needed.

Occupational therapy helps identify what physical adaptions of the home need to be made to make daily activities easier and safer for our loved ones. These include things like grip bars near the toilet for ease of getting up (or a sturdy raised toilet seat with bars – my preference), grip bars in the shower or tub to prevent falls, and transfer seats for the tub to make getting in and out easier. They can also identify safety hazards – for example, throw rugs are very hazardous for elderly and those using walkers – in the home.

Additionally, occupational therapists can help our loved ones with functionally-appropriate ways to do everyday things. While our loved ones with dementias and Alzheimer’s Disease generally find their own unique adaptive ways with our help, occupational therapists are critical in the recovery or maintenance of people who have suffered strokes.

Speech therapy can be helpful for people who have suffered strokes. In the case of our loved ones with dementias and Alzheimer’s Disease, in general, speech therapy is not a viable option.

The nurse (case manager) will contact these therapists as warranted and set up the initial consultation appointments. Each therapist will then set up his or her own visitation schedule.

If additional assistance is needed with daily activities such as bathing, most home health care agencies have home health aides who will come at least twice a week to help with with those activities.

One of the best features of home health care is our access to 24/7 medical support. As anyone who has been a caregiver knows, the need for medical advice and/or assistance often occurs at night and on weekends. Without home health care, the only option is to take our loved ones to a hospital emergency room (nights) or an urgent care facility (on weekends).

Many of the medical issues that occur are easily treatable at home, so having to get our loved ones to a medical facility where they often have to wait for a considerable amount of time to be seen, treated and released is very stressful and hard on them.

With the 24/7 medical support of home health care, we can easily assist our loved ones at home without creating unnecessary stress and discomfort for them.

Home health care services are covered by health insurance (if under age 65) or, if 65 or older, by Medicare Part A (80%) and Part B Supplemental Insurance (20%) and should not incur any out-of-pocket costs for our loved ones with dementias and Alzheimer’s Disease.

We should be aware that most hospitals partner with a particular home health care agency in the area (most of the corporations that own hospitals have a home health care agency as a business unit in their corporate structure), but we should research – the best (and worst) referrals come from other people who’ve used an agency’s service – all the home health care agencies in the area we live in and choose the one that best suits the needs of our loved ones with dementias and Alzheimer’s Disease.

All home health care agencies are not created equal. Some provide excellent care and service and some do not.

When our loved ones are discharged from the hospital, a discharge coordinator will be involved and he or she will initiate our request for home health care (again, they will not always offer it, but we should always request it). If we don’t have a preference, he or she will use the home health care agency the hospital partners with. If we do have a preference, we should state that. Then he or she will contact that home health care agency to provide follow-up care in the home.

It’s important to be aware as well that we have the right to fire a home health care agency and, going through our loved ones’ primary care providers, get a referral to another home health care agency that we choose.

We should not and do not have to accept poor or inadequate care for our loved ones, nor do we have to accept a situation where the attitude of the staff is poor or indifferent and where the staff does not treat our loved ones with respect, kindness, dignity, and gentleness.

If the home health care agency providing care for our loved ones with dementias and Alzheimer’s Disease is not satisfactory, for whatever reason, then today is the day to make the change to another home health care agency. We owe our loved ones the best, the most professional, and the most respectful medical care available. Never settle for anything less than that.

In the next post, we’ll look at the option of palliative care and when it is used and what services it offers.

Medical, Financial, and Legal Advocacy and Help: What Happens If You Can’t Advocate For and Help Yourself?

Jun11

All of us need to be preparing in advance for the possibility that something – whether it’s Alzheimer’s Disease, dementias, other life-threatening illnesses, or simply time and chance – could suddenly and dramatically or slowly and insidiously render us incapable of taking care of our own affairs.