Alzheimer’s – and other forms of dementia – are menacing and oppressive diseases. 

First and foremost, they take their toll on those who are directly afflicted. 

But they can – and do – cause much wider-spread devastation. 

Those who have seen it “up close and personal,” know this can include financial, physical, relational, and – for those so-inclined – even spiritual fallout.

I have gotten – and will get further – into those angles in other videos.

But among the myriad negative effects are the various emotional and psychological consequences associated with Alzheimer’s – and with dementia caregiving.

Some of these are widely discussed. At least… they’re addressed in general terms, abstractly.

But there’s an issue that tormented me, personally. Reading comments on some of my videos – especially “When Is It Time For a Nursing Home?” – it seems that I’m far from the only one. 

So, in this video, I want to talk about what to do when your caregiving efforts drive you to agonize over the question: Does this make me an awful person?

Caveats

I am not a counselor, psychologist, therapist, or anything close to these. And I am not a healthcare provider or medical practitioner of any kind. Therefore, I cannot diagnose mental- or physical-health conditions, and I am unable to give specific personal advice. If you have depression or thoughts about self-harming or anything in those vicinities, you need to seek professional help. This video is intended for general educational or informational purposes only. I am speaking solely from my own experiences and reflection. And my aim is to raise awareness of these issues as well as foster feelings of solidarity among other caregivers and sufferers. The message is: You’re not alone if you feel this way or have these concerns and doubts. 

Ten Reasons Why Being a Caretaker Can Make You Feel Like a Terrible Person

This will be rough-going. I’m going to try (!) not to linger on any point – but just sketch them. As always, your comments are welcomed, especially since it’s a good bet that I missed something.

#1 Missing the Signs of Dementia

If you’re like me, you may have a tendency to punish yourself for not having recognized the evidence of Alzheimer’s, or for misinterpreting the signs that you did see. This may or not be the first thing that prompts you to feel rotten. But, thinking back over my caregiving experience, it was the first thing that I thought of. 

As I have explained in several videos, my mom seems not to have recognized my dad’s dementia at all. When I came into the picture, I knew immediately that something was wrong. 

But I didn’t understand what I was witnessing. Frankly, I thought my dad had turned into a jerk.

It’s easy to feel bad for thinking ill of him. In retrospect, the temptation is strong to regret not being more intuitive or perceptive or for lack of knowledge.

But REALIZE: Alzheimer’s is a tricky disease. And (as I explained in a past video), even doctors can fail to see the writing on the wall. So don’t beat yourself up! We’re not omniscient, after all.

# 2 Being Unable to Help Them

A major and continual problem is our seeming inability to provide meaningful assistance.

When your loved one is struggling to remember an event or name, you may be unable to convince them of an answer that you know to be correct. And you’ll feel like a failure.

REALIZE: It’s not like helping a non-afflicted person remember something they’ve temporarily forgotten. A normally functioning person can know they’ve forgotten something and, after it’s been brought back to their attention, they can remember what they’re forgotten. Alzheimer’s Disease literally destroys the brain. At some point, a cognitively impaired person may no longer have the forgotten memory or any means to retrieve it.

Even more, we’re powerless to stop the advance of dementia. This is obviously a deeply distressing fact. And even though Alzheimer’s is only one of numerous terminal illnesses, it – and cognitive disorders like it – don’t just kill the body. They kill the mind and the personality.

It’s gut-wrenching when your loved one doesn’t recognize you, or repeats over and over that they wanna go home, when you’ve gone above and beyond to give them a caring environment. 

FURTHER REALIZE: That just your calming voice or loving touch is helping them at some level. Yes, you feel terrible when you make a loving home-care environment, but it goes unacknowledged. And, it’s true, once their impairment is far-enough advanced, they probably won’t be able to appreciate your efforts. The most important thing, however, is that you provide an objectively loving, safe, and secured space for them – not that they are aware of your efforts. 

#3 Calling in ‘Authorities’

Alzheimer’s sufferers may have outbursts. Some might sob uncontrollably. Others may laugh inappropriately. It’s easy to become distraught when you’re unable to calm or comfort them. 

My dad was at the opposite end of the emotional spectrum. He frequently exploded in anger. I had to physically restrain him on one occasion. Just what do you do when things get heated? 

I once called a well-known dementia-care support group (that’ll remain nameless). And I asked them this question. Believe it or not, the advice I was given was: Call the police! 

…which – after my dad’s next nasty outburst – I actually did.

I’ve no clue whether this suggestion reflected an organizational policy or was just the quirky opinion of the person who happened to answer the phone that day. And I’m not saying the step is never warranted!

But, in my case, the ensuing encounter was thoroughly discouraging – and the intervention was revealed to be obviously unsustainable.

Oh, sure, dad settled down at that moment. But I was made to understand – in no uncertain terms – that the police department had neither the manpower nor the training to be home-care “orderlies.” And it’s not like my dad “learned some lesson” or would even remember the episode.

REALIZE: You do what you can with the data you have. I like to draw an analogy with the daily forecast. If you plan your activities around the expectation of sunny skies – and you did your due diligence: checking the radar and weather report, etc. – and it ends up raining, it’s not your fault. Sometimes the best information available to you is just plain wrong.

Another aspect of this isn’t quite as dramatic. It has to do with your loved-one’s doctor.

As I noted elsewhere, physicians often depend on family members to know that something is wrong with a loved one. In my case, I wrote to my dad’s primary doctor letting him know that my mom, my sister, and I were all extremely worried – especially about the issue of his driving.

Specifically, I had to push the doctor to write a report that resulted in dad’s license being revoked. And that felt really lousy. – like I was going behind my dad’s back and betraying him.

What I had to REALIZE, there, was that other people’s lives and wellbeing were at stake. It wasn’t simply about my dad and his autonomy.

What if he confused the brake and the gas pedal while at our local park? – with families walking everywhere and little kids bike riding, playing, and running all over the place?

No. I felt that – as unfortunate as it was – it had to be done. And, ultimately, it wasn’t me doing anything to my dad; it was the Alzheimer’s Disease that was to blame.

#4 Being Embarrassed by Them

But, of course, when your loved one loses their mobility – or has their autonomy restricted, that doesn’t necessarily mean they simply become homebound shut-ins. – At least, not until the dementia becomes really physically debilitating. 

It probably means that you have to pick up the transportational “slack.” And this may not simply range over doctor’s appointments.

If you’re in the position of having to assume caretaking all by yourself – and see my recent video – then you might have to cart them along: As you go shopping and run other household-related or personal errands.

And even if you’ve got help on those fronts, your afflicted loved one will need haircuts. Maybe they gain or lose weight and need to try on new clothes. 

You might even want to include them in enrichment or leisure activities. My dad always enjoyed outdoor theater during the summer. My mom and dad had their favorite restaurants. And so on.

But, this can give rise to awkward situations. For instance, I was present at a church service during which my dad caused an obscenity-laced disruption. Several times, he caused a “scene” at local stores. He even picked a fight with a relative during a family reunion over some slight – whether real or imagined – that apparently went back decades. 

These sorts of experiences can make you not want to be seen with them in public or take them outside at all. 

REALIZE that your loved one may benefit from interpersonal interactions. But, sometimes, events are too busy or loud for a person with dementia. They may easily become overstimulated or overwhelmed. So, if possible, choose events and places that are calm and relaxing. 

But what can you do about feeling embarrassed? Firstly, it’s totally understandable. Just ask parents of unruly kids.

Something else that I wish I had done more frequently was to alert people around me about my dad’s cognitive problems. There is one way to do this without making a fuss – and without having to say anything out loud that your loved one might not take well.

Namely, there are little business-card-sized announcements displaying text such as: “The Person I’m With Has Dementia. Please be patient. Apologies for any inconvenience.”

In my experience, most of the time, when bystanders react negatively, it’s because they think that a person who is behaving badly is freely choosing their actions. If you can alert people around that something is wrong, they are often much more forgiving.

#5 Losing Patience With Them

Speaking of this, it’s not always easy for caretakers to remain calm, either. And there’s certainly no shortage of composure-testing situations that can arise in a home-care context. 

Providing daily care – including supervision – can become monotonous and tedious. Depending on your demeanor, one of your constant struggles might be losing your temper.

It’s easy to become impatient when you have to say the same things over and over. 

Again, child rearing is similar in this regard. But, with kids, at least they’re small and are acquiring the capacities to learn and remember. – Not so with a dementia-afflicted adult.

REALIZE that you might not be able to handle caretaking all by yourself. At some point, you might need to seek assistance. This might mean that you have a heart-to-heart with relatives and ask them to step in – whether temporarily or on an ongoing basis.

But it might also require that you consider professional-care options. As I’ve discussed elsewhere, respite facilities exist to offer family caregivers “breaks” on a short-term basis. And, of course, nursing homes may be the only viable long-term alternatives to home care.

#6 Feeling Your Loved One Is a Burden

Another way to say this might be that you find yourself resenting their decline. I mean…

It’s justifiable, and natural to lament your loved one’s cognitive and physical deterioration. 

But what I have in mind is different. It’s that you might find yourself becoming bitter at all the time you have to spend attending to their needs. Or you may develop a “grudge” over the fact that your loved one is unable to appreciate – or understand – your predicament and sacrifices.

Relatedly, you might get depressed – or panicky – at the emotional, financial, or physical strain. This may well include having to take leave from a job and, essentially, to put your life on hold.

REALIZE that you’re only human. Your capabilities and your resources are finite. It’s important – vital even – not to make rash choices. If you find yourself down in the dumps after an especially trying week – or month – then try to give yourself a bit of space.

That’s easier said than done, of course. But, as I have discussed in past videos…

…most recently, the one titled “Is It Possible to Be a Caretaker All By Yourself?” …

…there are a few options available to help you. I’ll defer to some of my other presentations for the details. But you may be able to secure what is called “Respite Care.” This is short-term assistance designed for the sole purpose of giving primary caretakers a much-needed break.

Sidelight: Know (Or Discover) Your Limits

At a certain point in time – it does no good for you to press too far beyond your reasonable limits. I choose my words very carefully. There are three key phrases or terms, there.

“A certain point in time,” “too far beyond,” and “your reasonable limits.” 

At the end of the day, only you (and your family) can determine, hopefully in consultation with each other, with friends, and with trusted advisers – like doctors, financial advisers, lawyers, etc. – what these points and limits actually are.

But the flip side of making a hasty decision when you’re temporarily or uncharacteristically emotionally low, is disregarding – or refusing to think about – your limits.

And that can land you in extremely dangerous territory. One sign of this might be, …

#7 Wishing Your Loved One Would Die.

Or wishing that they were already dead. Let’s draw a few distinctions.

Number one, there’s a difference between (on the one hand) lamenting that your loved one is suffering – focusing on their pain for their sake – …

…and (on the other hand)  worrying about their pain because of how upsetting it is for you. – whether for you to deal with, or for you to witness at all, or… whatever.

My dad wasn’t diagnosed with Alzheimer’s Disease until the summer of 2009. Immediately preceding that diagnosis, my dad had had two major surgeries just a couple months apart. 

On the eve of the first – a triple bypass – my dad was literally on death’s door. Those surgeries prolonged his life for seven years, as it turned out.

But, it’s easy to ask: For what?! Those years were dominated by cognitive decline. I spent four of them caring for him at home, and he spent his last three in a nursing home.

I regularly found myself wishing, or at least, wondering: If only he had died in 2009! 

Don’t get me wrong: On my better days, what I was mainly thinking was: If only he had died of a heart attack, his death would have been relatively quick (in theory)… and he would have been spared a near-decade of slowly wasting away – both mentally and physically. 

There is space, here, for a discussion of various spiritual perspectives. I’ll leave that complicated topic for a possible, future video. But REALIZE: You can’t control what life gives you; you can only control how you react or respond to it. 

Granted, it’s easy to say and hard to do. And I confess: not every thought I had was “altruistic.” 

So, number two, we also want to distinguish between a fleeting “bad” thought and an all-consuming idea. Admittedly, there’s a vast middle ground between the two extremes.

Anyone might be susceptible to having the occasional selfish desire. You want to guard against obsessing over such thoughts. For me, this came when my dad was in the nursing home.

Towards the midpoint of dad’s nursing-home stay, we had our first dealings with hospice.

“Hospice” is end-of-life, palliative care for terminally-ill patients. Every time we’d get a call that dad was being “put on hospice,” the news hit us as if he’d just been handed a death sentence. Obviously, I’m speaking loosely. The late-stage Alzheimer’s itself was the real death sentence.

We just didn’t realize that a person can see-saw on and off hospice. Roughly half the time dad was in a nursing home, my family was on edge, expecting that his death might come any day.

That is exhausting, to say the least. Your emotions are like a yo-yo. And it can be both financially and physically demanding.

For example, the first time you think your loved one is at the point of death, you cancel appointments, you take off work, and you otherwise bend over backward to be present as much as possible. If and when they recover, you’re relieved – and not a little surprised, frankly.

But then it happens again. And again. And again. Finally, you worry how you can keep doing this. And you’re basically stuck. If you do react to every wave of hospice as if it were going to be your loved one’s last minutes on earth, then you can place an ever-increasing burden on your family – depending on how many cycles they go through. 

After all, it’s not easy to set aside a year, two years, or whatever to be a part of some protracted, open-ended hospice scenario. Sad, but true.

But if you don’t respond, then you risk not being there when your loved one actually passes. You don’t want them to die alone. So, more than once, I wished he would just die. Because I’m here this time. Or my mom is with him right now. Or my sister is visiting from out of town. If he pulls through again, I don’t know which of us will be present next time. 

The thing to REALIZE, here, is that we’re only human. The best you can do sometimes, is to take things one day at a time. Have an honest and open dialogue with the hospice and medical staff about your loved one’s situation. And try to plan (as best you can) for rainy-day scenarios.

Regardless of what stage of care you’re in, and where that care is being delivered, try to nip any selfish thoughts in the bud as soon as they pop into your head. Again… easier said than done. 

It may help to focus on why you’re doing this. Think about positives – like happy memories. Try to “reframe” the situation, or look at the end-of-life process as a series of opportunities to spend a few more precious moments with your loved one than you thought you’d get.

If you’re in a home-care situation, then consider whether these thoughts – especially if they’re preoccupying you – might be signs of an impending breakdown. Be honest with yourself.

That includes reaching out for help if and when it’s necessary. It might mean that you seek counseling or arrange for respite or hospice care for your loved one.

It doesn’t do any good to simply bury or deny your feelings. The overall caregiving may suffer – which would be bad for your loved one and for you. And that leads to the next consideration.

#8 Regretting Your Caretaking Decisions

It’s an understatement to say it, but …the caretaking road is tiring. 

It may also be long and winding. You may feel like you’re wandering lost with no clue how long it will take you to arrive anywhere – or to get back. 

You may have mounting debt or expenses. You yourself may be developing age-related physical problems at the same time your loved one is declining. These – and other – factors can lead you to wonder: Can I do this at all? Or …Can I keep doing it? 

You can get the distinct impression you’ve bitten off more than you can chew.

And that can lead you to think you made the wrong choice – or a bunch of wrong choices – somewhere along the way. I want to tackle that worry head-on in another video.

But if you start thinking that it was a mistake to take your loved one in, or to assume caregiving responsibilities in the first place, then it can throw you into a spiral of self-doubt. 

REALIZE: You’re not alone. Probably every caretaker will harbor similar concerns if they are at it long enough. While this won’t necessarily allay fears that you took a wrong turn, I say it because it’s arguably never clear to anyone what the “correct” path is. You consider your loved one’s well-being of paramount importance, you gather information, you talk your options over with trusted friends and advisers, and you try to do the best you can with the hand you’re dealt.

If, ultimately, things become unmanageable, that may lead to you having to course-correct.

#9 Having to Institutionalize Your Loved One.

And that leads me to this next item. Let me come at this by way of a recent comment. Let’s just say that the opinion was acerbic.

The commenter wrote, in part: “ …I cared for my wife on my own… It did not occur to me to farm her out to await death to make my life more comfortable. …”

Honestly, I doubt that the commenter watched my video. Instead, it seems that he was merely reacting to the title. It’s possible that he misconstrued “When Is It Time for a Nursing Home?” as me saying that – eventually – every caretaking scenario will end with institutionalization. – Which, of course, I don’t believe is true and never said.

Either that, or else he objected that anyone would ever admit their loved one into a nursing home. It’s a view that treats the nursing-home option as tantamount to throwing in the towel (at best) or seeking the easy way out (at worst). 

For our purposes, I’m highlighting this because it might easily be taken to heart as an indictment of a caretaker’s commitment to his or her loved one. – As if the only way to show love is to assume full caregiving duties – and stick to them – come hell or high water. Since I turned to professional care, that makes me a bad son.

REALIZE that no one has walked in your shoes. No one should impugn someone’s else’s familial love on the sole basis of their having to utilize a nursing home. 

If we didn’t care, we wouldn’t be anguishing over the decision. 

But not only is a comment like this uncharitable, it’s really incomprehensible. It half-implies that nursing homes should never be an option. 

As many of you know all too well, it’s not always possible – emotionally, financially, physically, or whatever – for family members to be at-home caretakers. In fact, if a better, more complete, kind of care can be delivered in a skilled-nursing facility than in a home, then you could turn the poster’s allegation around and say it would be unloving not to use the nursing home.

Personally, I believe that things are often much more complex and nuanced than either of these dismissive reactions would suggest. For one thing, nursing homes may (or may not) offer quality care. This is just to say that the way forward is not always obvious. In fact, I’d be hard pressed to find a case where the “right decision” is obvious! 

No …If there’s certainty in any of this at all, it’s that there is no one-size-fits-all approach. 

Thankfully, though, you and I have nothing to prove to anyone else. At the end of the day, it’s for you – in consultation with your support network – to make the best decision you can for your loved one and for your entire family.

#10 Finding That You Don’t Feel Anything at All

Up to now, we’ve been trying to come to terms with various experiences that can make you feel miserable. And that unhappiness can make you wonder if you’re an awful person.

But what happens if you don’t think you’re feeling anything at all? 

Someone might hear me explaining how I was tortured over things like the decision to admit my dad into a nursing home or how I was periodically embarrassed by him in public, and so on.

And it’s perfectly imaginable that somebody might think: I’ve never felt anything like that. Does that mean I’m a horrible person?

REALIZE that people deal with adversity differently. I tend to be a reactive, volatile person. I can get worked-up easily.

So, don’t compare – and certainly don’t judge – your emotional reactions to mine or anyone else’s. 

But also REALIZE that not feeling anything can mean a lot of different things. For example, it might mean that you’ve become emotionally numb. Caretaker burnout is a real danger. 

Remember, also, emotional flatness can be bound up with the so-called “denial stage” of grief processing. So, as I stated earlier, just be willing to be honest with yourself. You might need to take a break. Or you may need professional help – whether for your own mental or physical well-being or for assistance with the day-to-day business of caretaking.

Concluding Remarks

Being a caregiver for someone with dementia can make you feel a lot like Sisyphus. You’ll recall that in the Greek myth, Sisyphus is fated to push a rock uphill for all eternity. Every time he manages to reach the summit, the rock rolls back down the mountain and he has to do it again. 

It’s frustrating. It can feel altogether absurd and futile. Additionally, some of the caretaking measures you may need to implement can feel like betrayals. That can be depressing. And it may lead you to feel inadequate, unworthy, and even wretched. 

Recently, I realized how many times in past videos I say something like “it sounds bad, but…”.

Why install double-keyed deadbolts on the entry doors? It sounds bad, but… it’s so your loved one can’t easily get out of the house.

How hard is it to care for someone with middle-stage dementia? It sounds bad, but… caretaking can be more manageable if they’re also physically disabled.

I was racked with guilt after having my dad admitted into a care facility. I had nightmares for years afterwards. And it sounds bad, but… the worst were bad dreams in which my dad came back to the house and I was once again thrown into a stomach-churning hopelessness. 

You love your afflicted dad, mom, grandparent, spouse, …or child! They’re not actively doing anything to you. They’re not intentionally making you miserable or “oppressing” you. 

And you know they’re suffering, too. As my sister said to me during one heart-wrenching exchange in which we discussed institutionalization: Dad is himself in a really bad place.  

That’s an understatement, of course.

Trying to imagine what it was like for him is, frankly, sickening. You’re “stuck” inside a body and with a brain that can’t or doesn’t or won’t cooperate with you?! I picture being locked in a windowless room – cut off from others and, eventually, from myself. It’s horrible, hellish, in fact.

Deep down, we know all this “full well,” as the saying goes. That’s the point. The enormity of the pain – on all sides – can be terrifying. Even so, you want so badly to continue to believe that – in their “heart of hearts” – your loved one cares about you, still remembers you, still loves you.

In a sense, it’s precisely that belief – and that hope – that adds insult to injury. 

Because… You desperately want to help them. But when they’re cursing you out and throwing things around the house; or when they don’t recognize you and they react to your caretaking as if you were an intruder; or when they refuse to bathe or toilet and you’re routinely cleaning feces off the carpet; you are thoroughly demoralized.

The situation creates an almost impossible tension. You’re sick over the prospect of nursing-home confinement. At the same time, you can feel like you can’t go on and on like this – or you will literally go insane or totally break down physically yourself.   

This psychic pressure can build to the point where your mind goes in really dark places.

I’ve been there.

I don’t want to leave this on a negative note. 

Please know that I truly, truly, truly empathize. 

If you’re presently going through a hard time, then I invite you to share your experiences and thoughts in the comments. 

And if you went through a similarly harrowing journey in the past, then I’d ask that you share as well. I have seen really beautiful exchanges in the comments. And I sincerely believe that people who are experiencing self-doubt – or loathing – can benefit from reading about what other people have undergone – and survived.

I hope that – if nothing else – this video encourages you that you’re not alone. And, sometimes, knowing that is about all that keeps you going. I wish you all the best. Thank you for watching.

The post When Dementia Caregiving Makes You Feel Like an Awful Person appeared first on Alzheimer's Proof.

So far, most of my content has dealt with Alzheimer’s proofing in home-modification scenarios and other long-term-care conversations.

But, today, I thought I would venture off the beaten path just a little bit.

Alzheimer’s also has a number of interesting theoretical implications as well. My academic background is partly in philosophy and so these theoretical questions are also of interest to me personally.

There are a great number of these cognitive impairments and dementia might surface in a number of different contexts. Ethics is going to be one. Metaphysics is another. Philosophy of mind has obvious relevance. So, I thought I would just pick one of those issues and I decided upon the question of the existence of the soul; that this is an issue that has been debated for thousands of years, so I am under no illusions about trying to resolve the issue in the space of a short web article.

In fact, I am not even going to take sides on the issue, what I want to do instead is just trying to present an accessible introduction to the range of issues, or if you are already familiar with these then call it a refresher course.

The question that is going to be somewhat in focus here is:

Does Alzheimer’s disease disprove the existence of the soul?

What I am going to do is assume the role of the person who says that Alzheimer’s does disprove the soul and then, on the other side of the fence, I’ll play the person who says it does not. I’ll go back and forth like this through five (5) considerations.

But, without further ado, let me present both sides!

Pro and Con Arguments

Against Soul #1: Alzheimer’s is a brain disease that can destroy someone’s personality. That’s the key point.

Alzheimer’s destroys personality by destroying the brain. So, take away the brain, and you take away the personality. A soul simply does not fit into that picture anywhere.

The brain is necessary for personality.

For Soul #1: The brain is necessary for personality. There is no real question about that. So yeah, if you take away the brain, you take away the personality.

But think of a Philly-Cheese-Steak sandwich. If you take away the cheese, you take away the Philly cheese steak sandwich. That does not show that there is nothing to a Philly cheese steak sandwich other than cheese.

The cheese is necessary, just like the brain is necessary. But arguing that the necessity of the brain shows the nonexistence of the soul is like arguing that the necessity of the cheese shows the nonexistence of …bread rolls.

Against Soul #2: Not really, because we already know that bread rolls exist, and we know the full recipe for a Philly cheese steak. It is part of our background information.

But, here, we’re trying to figure out what the full recipe for personality is, based on empirical evidence.

Personality is made up of brain states. Think of it as like how a team is made up of players and coaches. There is nothing more to a team than the people who make it up, and there is nothing more to a personality than the brain states that make it up.

For Soul #2: Well, wait a minute!

The evidence shows dependence. Personality depends on the brain. But dependence is not the same thing as identity.

A team may be identical to the people that make it up. But, then, a team is not a good analogy.

A better analogy would be to think of a musician. A musician depends on a working, well-tuned instrument in order to make music. If the instrument is broken, or out of tune, then the quality of the music is either dramatically lowered, or the musician may not be able to make any music at all. But this dependence of the musician on a working instrument certainly does not imply that music is identical to a good instrument.

Similarly, the fact that personality is dependent on the brain does not mean the two are identical. The brain is an instrument of the soul.

Against Soul #3: But we can experience both musicians and musical instruments. We know they are two separate things because we can have dealings with both of them.

Again, in this case, were trying to figure out how many things there are.

Just because there could be something more than the physical brain does not mean that there is.

Number one, it’s not clear how a nonphysical thing like a soul could use a physical brain as a tool.

And, number two, the principal known as “Occam’s Razor” tells us not to multiply causes, and to prefer simpler explanations.

So, in this case, saying that personality is due to one thing – a physical brain – is simpler than saying that it is due to two things – a physical brain plus some mysterious “soul.”

For Soul #3: There’s a saying, sometimes attributed to the famed physicist Albert Einstein: “Make everything as simple as possible, but not simpler.”

Simplicity is great, but it is not always a matter of just counting proposed causes.

Suppose someone is investigating a house fire, and they notice that the wiring is faulty, and that there were oily rags strewn about the entire place.

Now, it would, of course, be simpler to explain the house fire only by talking about the faulty wiring, and not mentioning the oily rags at all. But, if the house fire was in fact caused by faulty wiring and the rags together, then any explanation that leaves one of those factors out is not a good explanation.

Occam’s Razor says we should not multiply causes beyond necessity. Sometimes multiplying causes is necessary.

Against Soul #4: In the case of your fire example, the multiplication of causes is necessary because the scientist, or in that case, the fire investigator, concludes from the evidence that having more than one cause is necessary to give a full explanation.

In the case of personality, the investigators, for example, neuroscientists, have not concluded that we need to appeal to more than the physical brain in order to have an adequate explanation.

So, appealing to anything else simply goes beyond what is needed.

For Soul #4: Fire investigators and neuroscientists are both scientists of nature.

Natural science deals with what is physically measurable and physically detectable.

So, natural scientists can tell you all about the physical causes of physical things, but they cannot tell you about nonphysical things. For example, the fire investigator can tell you about faulty wiring and oily rags but cannot tell you that the fire was a tragedy.

Things like tragedies, or indeed souls, are nonphysical things. But, being nonphysical does not mean that they are not real parts of human experience. They are; they just go beyond what natural science can talk about.

Against Soul #4: We do not need the fire investigator to tell us that the fire was a tragedy. That’s obvious. But having a soul is not obvious.

For Soul #4: Here is what’s obvious: I have a rich inner experience – a private mental life – that goes beyond what neuroscientists can image, or test, or quantify in physical experiments.

Against Soul #5: We are getting off track. Here is the bottom line.

My dad got Alzheimer’s disease and progressively forgot more and more, and got worse and worse until, eventually, somebody could have looked at him and said he was a completely different person.

And that horrible decline was due to a brain disease.

So, at the end of the day, who my dad was, and who we all are, is dependent on, caused by, or explained in terms of the brain.

If something like Alzheimer’s disease comes along and damages our brains enough, it can literally change who we are.

And this is not at all what we would expect if we had, or if we were, something other than, a physical brain.

Therefore, Alzheimer’s disease shows: Probably, there is no such thing as a nonphysical soul.

For Soul #5: Well, my dad went through Alzheimer’s disease, too.

Notice how we both said that.

“My dad developed Alzheimer’s disease.” “My dad got progressively worse.” “My dad forgot who he was.”

But all that happened to the same person: My dad.

Yes, his personality was dramatically and tragically changed, because we know – from science – that you have to have a working brain in order to be a healthy and recognizable version of yourself.

But my dad never literally became someone else. If he had, why would the family have continued to care about him at all?

See, that is really the point. If, as I think, he was still numerically one and the same person, even after his brain and his personality were destroyed, then the question is: What was it about them that stayed the same the whole time? What continuous, existing thing explains that identity over time?

It wasn’t his brain, or his memories, or his personality. All those things were destroyed by the Alzheimer’s!

Therefore, I say that the thing that stayed the same was something the Alzheimer’s could not destroy: It was his soul.

Conclusion

These are heavy, theoretical topics! Bear in mind that I have left out quite a lot!

Philosophical reflections on questions regarding the soul may spill over into discussions of personal identity, memory, and so on – each of which on their own fill countless pages and extend back hundreds and even thousands of years.

Conversations of this kind often invoke obscure words and forbidding terminology. You may hear talk of “aboutness” and “intentionality.” You may be exposed to ponderous phrases like “mind-body dualism” and “reductive versus non-reductive physicalism.” You might hear great-big words like “supervenience.”

In the above presentation (and accompanying video!), what I have tried to do is to give a presentation of the issues without any of that jargon.

I have, however, bumped up against some of the deeper concepts. For example, there is an underlying discussion of necessary and sufficient conditions. I touched on this a little bit, without naming it specifically.

But, there are other important issues that I simply haven’t gotten into at all. For instance, there are questions about identity and what is sometimes called “Leibniz’s Law.” I did not really get into those at all.

And the conversation can easily turn into a subset of philosophy called “modality,” where the discussion is about concepts like contingency, possibility, and necessity.

Suffice it to say that there is plenty of room to expand a conversation like this!

So… if you feel like I have left out your favorite argument or your favorite consideration, please understand that I have not done it to purposely weaken one side of the argument or another, or to play favorites. I have simply done it because I felt that introducing another concept might have made the article a little bit less accessible.

And bear in mind that all of that is simply keeping the conversation in the realm of what you might call “philosophy.” The conversation could easily be further expanded to include religious doctrines, theological opinions, etc., and that could be an entire presentation all on its own.

What I did present was simply designed to be an introduction to the issues.

Although I may certainly get into further theoretical issues in the future, understand that this website is mostly about some very practical concerns about how to Alzheimer’s Proof your care environment. Or, indeed, I get into how to Alzheimer’s Proof your own diet and lifestyle to reduce your own risk of developing diseases like Alzheimer’s and other forms of dementia.

Of course, I have further content along those lines planned. So, I invite you to bookmark the page and check back!

Thank you for reading or watching!

Feel free to leave your thoughts in the comments, below.

The post Does Alzheimer’s Disease Disprove the Existence of a ‘Soul’? appeared first on Alzheimer's Proof.

In order to help pay for my dad’s nursing home care, my mom had to reduce her already modest assets as part of what is commonly referred to as a Medicaid spend-down.

But what is Medicaid? How do you qualify for it? Who is it designed to assist? And why do so many people have to expend their life savings in order to get it?

Let’s take a look at Medicaid.

In this introductory article, I’ll lay some basic groundwork – and provide a few essential definitions and concepts.

In two follow-up articles, we’ll discuss the all-important financial qualifications: first assets, then income. So… stay tuned!

(Also, be aware that this additional content is already available in the form of YouTube presentations and can be accessed HERE and HERE.)

Disclaimers

First of all, I need to give the usual disclaimers and in fact I want to amplify what I normally stay. I am not an attorney. I am not a financial advisor of any kind. You can consider the topics that I discuss to be research leads just to help you as you are thinking through these issues and hopefully help to shorten your learning curve in some of these important topics. But nothing that I say in this video should be construed as advice of any kind. If you need actual recommendations and evaluations, you need to consult with licensed professionals in your area. In this case, I am talking about attorneys who are knowledgeable about Medicaid, or other Medicaid experts.

The usual disclaimers are especially important in this case. That’s because Medicaid is just so complex; Medicaid’s rules and regulations are subject to amendment and modification; eligibility and other limits can be expected to change almost annually; Medicaid has as many different variations as there are US states.

So, you should meet with someone, not just is knowledgeable about the rough contours of the entire program, but somebody who knows the nitty-gritty of your local situation or state situation and how best to advise you.

What is Medicaid?

Medicaid is a United States government program that is designed to help impoverished people pay their medical expenses.

Sometimes, Medicaid is referred to as a joint federal and state program. Other times, Medicaid is referred to as a federal program that is administered by the U.S. states. And, sometimes, it is thought of mainly as a state program that has infusions of federal cash.

The federal government generally provides funding for benefits that are mandated at the federal level, which makes sense. The states, in turn, provide administrative services. They also pay for state-specific benefits.

However you think of it, or by whatever name you call it, Medicaid has a foot on the federal level government as well as on the state level.

This is one key reason for its (aforementioned) complexity. Namely, the particulars of how the plan is implemented and managed are going to vary according to the state that you are in.

Medicaid Isn’t Only for Long-Term Care

It is important to understand at the outset that Medicaid is a broad program and can cover many different medical services.

For example, it can cover routine doctor visits. It can cover hospital visits, long-term-care facilities, nursing homes and the like of that.

The long-term-care applications will be my focus in this series (since it’s the obvious concentration of the website). But Medicaid can cover a lot more than that.

And if you have need for additional services, for yourself or for your family, I am sure there are other resources that will expand my treatment.

Potential Pitfalls

Because of the complexity of the topic, there are certainly going to be a number of pitfalls.

Firstly, it’s easy to confuse Medicaid with Medicare. Not only are the two words similar, but both programs are overseen by the same government agency, the Centers for Medicare and Medicaid services, or CMS. CMS is a major division of the United States Executive Branch Department of Health and Human Services, with the cabinet-level Secretary of Health and Human Services at the helm of both programs.

However, these programs differ in terms of who is eligible and what services are covered.

Medicare is basically health insurance for seniors. Some of the premiums might vary in terms of the amount that is paid. But, otherwise, Medicare covers seniors of any income level.

Here, “senior” simply means a person who is 65 years of age or older.

There is an important caveat.

Medicare is called upon to deliver health coverage to people of any age, provided that they also are recipients of Social Security Disability Income (or SSDI), or if they suffer from end-stage renal failure (or kidney disease). Medicare itself is complex.

Medicare is a complex program itself. For my own YouTube-video treatment, see HERE.

In broad strokes, though, Medicare Parts A and B cover hospital and doctor visits, respectively. Part D was added to help provide prescription-drug coverage.

You can talk about something referred to as Medicare “Part C,” also known as “Medicare Advantage” plans. (These function something like Medicare HMOs)

And, to complicate matters further, Medicare Parts A, B and D can be further augmented with what are called “Medicare Supplement” (or “Medigap”) plans. (These, in turn, are also designated with letters like “Medicare-Supplement A,” “Medicare-Supplement F,” and so on.)

Medicare & Social Security

Historically, Medicare has a fairly tight relationship with Social Security.

For example, although it does have a deductible, Medicare Part A is usually delivered premium-free to people who are fully qualified to receive Social Security benefits. It is in this sense that Medicare Part A is often referred to as “automatic.”

It is important to note that if you are not eligible to receive Part A cost free, you may be able to purchase it.

Medicare has long had this close association with the Social-Security program

In fact, Medicare’s eligibility age, 65, once corresponded to the Full Retirement Age (or “FRA”)[1] for Social Security recipients. Even though the full-retirement age has been increased for most retirees, Medicare’s eligibility age has remained the same.

Medicare part B is never free. Though it’s actual premium cost will depend on many factors, including your income level.

Medicaid Will Be Our Focus

As stated from the outset, going forward, this series will be concerned with Medicaid (and its financial requirements), the government’s financial-assistance program for impoverished people – regardless of their age.

So, we come to one quick way of distinguishing Medicare and Medicaid.

Medicare has an age requirement,[2] but no income requirement. As long as you are 65 years of age, or older, you are eligible for Medicare.

On the other hand, Medicaid has no age requirement, but it does have an income requirement.

To rephrase: Medicare covers people 65+ years of age, of any income level; Medicaid covers any aged person, but only if they are of a low-income level.

Which Program Covers Long-Term-Care Costs?

“Medicaid also covers long-term care costs, both in a nursing home and at-home care. Medicare does not provide this coverage.”[3]

As noted by CNN, long-term care and nursing home costs are not generally covered by Medicare.

Medicare really only covers “curative,” skilled-nursing care – in a Medicare-approved facility. And, even then, it only covers skilled-nursing-home costs, provided that your entry into a qualifying facility followed a hospital stay of at least three days.

Additionally, Medicare coverage is calibrated to what are termed “episodes of care.” And each skilled-nursing-home visit is only covered up to 100 days per episode.

So, since Alzheimer’s and related dementias are not “episodic” in the relevant sense, we can basically say that Medicare is going to be irrelevant for the purposes of long-term care and nursing home care.

Another reason for this irrelevance is that long-term care is often bound up with what is called custodial care, and this is to be distinguished from skilled nursing care.

Basically, custodial care is help with the activities of daily living, whereas skilled nursing care is what you would normally think of in terms of medical care, medical testing, the administration of drugs, and the like.

(For my YouTube presentation explaining the difference between custodial and skilled nursing care, see HERE. For my written article on the same topic, see HERE.)

As if things weren’t confusing enough as it is, Medicaid is able to pay some of the expenses associated with Medicare. Examples of this would include the Parts B and D premiums, the Part-A premium (when it is applicable), and the various Medicare “co-pays” and deductibles.

Intro to Medicaid Eligibility

Each state sets its own guidelines for eligibility, within various limits.

For many states, Medicaid assistance is available to people who are below, at, or near the federal poverty level, or FPL.

Recipients cannot have incomes that exceed about 130-140% of the FPL, adjusted for household size. And these low-income requirements are very strict.

In addition, Medicaid recipients are not allowed to have much by way of assets or, in the Medicaid terminology, “resources.”

But, these two financial tests – one pertaining to assets, and one pertaining to income – are quite intricate. So much so, in fact, that I will be devoting a separate article to each of these.

So, I invite you to stay tuned for those posts.

And, in the meantime, feel free to view the companion YouTube videos. My discussion of Medicaid’s asset requirements can be found HERE, and my coverage of the relevant income requirements is HERE.

Notes:

[1] Note that, in some literature, this is instead termed the “Normal Retirement Age,” or NRA. Presumably, FRA is more common due to the fact that the letters “NRA” more commonly designate the National Rifle Association.

[2] For the exceptions to this, see the previous section.

[3] “What Does Medicaid Cover?” CNN, <https://money.cnn.com/retirement/guide/insurance_health.moneymag/index21.htm>.

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When a resident retains his or her reason, then – in principle – he or she can “advocate” for themselves in the sense of communicating their desires and needs to facility administrators and staff. But what about cognitively impaired residents, such as those with Alzheimer’s Disease or some other form of dementia?

Such persons may require additional assistance. And this is where a Family Council can come in.

Long-Term-Care Resident Groups

Residents in long-term-care facilities, and families of people residing in such facilities, have the ability to form groups. These groups are often organized to facilitate discussions focused on resident needs and facility changes that may have to do with quality-of-care and quality-of-life issues.

As it happens, these groups, when formed, have tended to be referred to as “councils.” There are two main types of these councils that may be created: family councils and resident councils.

Resident Councils

The most basic variety of long-term-care group is going to be the resident council.

In general terms, a “resident council” is an association of individuals who live in a particular care facility and who wish to work together for the enhancement of their shared living experience.

When they exist, resident councils are independent of the care facility. To put it another way, the resident councils are not controlled or run by the facility administrators or staff.

I say that this sort of group is the “most basic” because it is natural for facility residents to provide feedback and input that pertains to their living conditions. They are interested in the facility, not simply in a psychological sense, but in an economic sense – that is, they have an interest in the policies and procedures of the relevant facility.

Family Councils

A related type of long-term-care group is the family council. As the name implies, “family councils” are groups organized and run by families (or close friends or representatives) of nursing home residents instead of the residents themselves. These family members then join with other families and speak for residents in advocating for policy and procedure changes that improve daily care and quality of life.

It should be said that nothing prevents residents from joining or participating in family councils.

Relatedly, I note that the point of the family council is not to compete with, replace, or supplant the resident council.

Rather, the point is to offer assistance to residents. And, the focus of this website being what it is – namely, Alzheimer’s Disease – it is important to observe that this assistance is especially necessary and valuable in cases where residents lack the ability to speak for themselves because of cognitive impairment, dementia, or similar conditions. (More on this, below.)

Brief Council-Related Questions and Answers (Q&A)

What Do Councils Do?

Both family and resident councils may bring to light issues surrounding care and living conditions. These may include, without limitation: the availability of food, medical equipment, silverware; the cleanliness of the facility; the functionality of things such as elevators; the reliability of internet access; and so on.

Essentially, any topic that impacts the quality of life of residents is fair game.

Once topics have been discussed, it is up to the individuals in the council as to how to proceed. Many facilities (see further on) are required to provide the council with a go-between or contact so that concerns can be delivered to the administration or staff without delay.

Councils may decide to bring their concerns to the facility orally or in writing – in a small group or via a designated council representative.

The first and preferable route would be to communicate with the facility.

However, if the facility is unreceptive for whatever reason, or if it somehow fails to satisfactorily address the expressed concerns, then councils may contemplate or undertake other actions.

Are Family Councils Only Allowed When Residents Have Dementia?

No. Family councils can be formed in order to support any person residing in a particular long-term-care facility, whether the resident is impaired or not.

However, it’s arguably even more important for a family council to be formed when resident loved ones do have cognitive impairments, since dementia sufferers may be unable to speak for themselves.

What Are Examples of Conditions That May Result in Cognitive Impairments?

Conditions may include: Alzheimer’s Disease, Creutzfeldt-Jakob Disease, Frontotemporal Dementia (Pick’s Disease), Huntington’s Chorea (Huntington’s Disease), Lewy-Body Dementia, Multi-Infarct (or Vascular) Dementia, Parkinson’s Disease, Wernicke-Korsakoff Syndrome, etc.

What If a Resident Has No Living (Or Interested) Family Members?

Residents may give permission to non-family members to participate in family councils on their behalf.[1] If a resident has a cognitive impairment, then things can get a little dicey. If you would like a non-family member to represent your interests in a family council, you may wish to record your wishes in writings prior to the manifestation of any condition that might call in question your mental fitness.

Are Long-Term-Care Facilities (Such as Nursing Homes) Required to Recognize Family Councils?

I will address this question at greater length in a forthcoming post.

But, for now, suffice it to say that Federal regulation (in Title 42 CFR 483.10) states that Medicare/Medicaid-participating nursing homes must recognize family and resident groups when they form.

Further, these facilities have to provide resident and family groups with private meeting spaces, and they need to take reasonable steps (with the approval of the groups) to make residents and family members aware of upcoming meetings in a timely manner.

Additionally, the facility must provide a designated staff person to act as a liaison to the group. This person will be responsible for providing assistance to the group and with delivering (though not necessarily writing) responses to formal requests that result from the group meetings.

Does the Long-Term-Care Facility Have to Respond to Council Requests?

The facility cannot ignore the group or suppress its ability to form. So, in this sense, yes, the facility must provide some sort of reply to a group when it is asked to do so.

This does not mean, however, that the facility is compelled to do precisely what the council requests.

Things are tricky. I will try to explore some of these issues at greater length in a future installment.

Six Characteristics of a Family Council

It may be helpful if I briefly sketch some of the qualities that a family council will have.

Autonomy

Autonomy refers to the fact that the group is self-led. Neither a family council nor a resident council is created or led by facility administrators or staff members. If the facility has started and controls a group, then it is not a family or resident council in the relevant sense – regardless of what the facility calls it.

Facilities are of course free to form their own groups; and residents or families are free to join these facility-created groups if they choose to do so. But the formation of a facility-led group is not a replacement for an autonomous family council, and joining a facility group does not bar a person from joining an autonomous group.

Facility Specificity

There may be groups that support anyone living at any nursing home. However, a family council is relative to a specific facility. The ties that bind the members of a family council have to do with the fact that members all have relatives who live in the same long-term-care facility.

Independence

Independence is an extension of autonomy. The administration does not have claims over the family council. The councils are not dependent upon the facility. Moreover, the council is not considered to be a government program. It is an independent association of families of people living at a particular facility.

Interest

A family council must be made up of a group of people who have an interest in the facility. In this context, “interest” does not simply mean a curiosity. It means there has to be an interest in more of an economic sense. Member families have to have some “stake” in the facility and, going further, in the standards according to which the facility operates.

Openness/Inclusivity

There must be no barrier to entry into the family council other than having a close friend or relative involved in the facility. The council be must inclusive or open in terms of its membership.

Privacy

The group is owed a private space that should be provided by the administration of the facility on the facility grounds. The facility cannot appoint a staff member to “sit in” on the meetings.

Administrators or staff may be invited by the group to attend meetings. But, apart from such an invitation, presumably furnished by a council officer or spokesperson, the group should be allowed to meet privately.

Once again, the facility may endorse or sponsor other, staff-led groups. And these groups may also listen to complaints or solicit feedback from families and residents. But, the existence of such facility-controlled groups does not undermine the ability of residents and families to form their own councils to advance their own interests.

Notes:

[1] Presumably, if there is a conflict, a resident could also revoke a family member’s permissions or otherwise “block” one of his or her family members from participating in a council.

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