Life as we knew it has been upended by COVID-19. As I’ve thought and pondered a lot on the changes we see and the potential changes ahead, I see that there could be some very good results that come from this, as well as some very bad ones.
I scan the news headlines a couple of times a day, and then I leave it alone. A steady diet of all the confusion, the outright wrong information (often from the government), and all the unknowns (and there are a lot) about COVID-19 can result in feeling overwhelmed and paralyzed. I don’t want that for myself. Continue reading →
Seven years ago today, I got a phone call at 7:15 am that I was expecting. The eight or so months preceding this phone call had been hell for both Mama and me (not all the time, but most of it).
It became apparent in those months that something was clearly wrong. Mama knew it and it scared her, and that made her defensive, hostile, and combative. I knew it, but didn’t know exactly what it was or how and what I could do about it.
Mama lived ready to fight. I lived ready to catch her when she fell, walking on eggshells, trying to keep things as sane, as calm, and as peaceful as was within my power.
These months took their tolls on Mama and me both in very different ways.
Fortunately, that phone call I received early in the morning seven years ago today helped relieve the toll on Mama in ways that she needed. I, on the other hand, still bear a lot of open, gaping wounds that may never heal from the toll it had on me.
Dementias change everybody who is involved and many of those changes, especially for those of us directly in the war zone with our loved ones, can’t be undone.
I’ve had people who’ve never been through any of this and who have not lived my life tell me they know what it’s like and they’ve walked in my shoes. And then the “I know what’s wrong and how you need to fix it because nothing will change until you do this” follows with condemnation and criticism instead of empathy and compassion.
In my opinion, there is nothing is more insulting, insensitive, or hurtful than having this happen to a person. I have to forgive – and I have – because that’s my responsibility. But wisdom must accompany forgiveness and wisdom says that it’s not healthy to keep these kinds of people in any kind of close proximity in our lives.
I’d give my life for any of them. I’d help them with my last breath if they needed it. I love them, but to keep them near or in my life isn’t possible because it’s not healthy for me nor, frankly, is it healthy for them. That time will come, but that time is not now.
My 7:15 am phone call seven years ago today was from a psychiatrist at a local hospital. She said Mama had been transported, after she called 911, at 3:30 am to the ER. The psychiatrist was going to involuntarily commit Mama to a geriatric psychiatric hospital and wanted my permission (I was Mama’s medical power of attorney).
I gave my permission because that’s where Mama and I were in our journey through dementias. I knew that’s where she needed to be, even though it broke my heart to think about it.
The psychiatrist gave me instructions on how to change the commitment to voluntary and told me what to bring for Mama at the psychiatric facility later that afternoon.
I hung up the phone, knowing that our lives had just permanently changed forever. And I got to work immediately adapting to that change.
Within the space of the next two weeks, we had a diagnosis of mid-to-late-stage vascular dementia and Alzheimer’s Disease (I also realized Mama had Lewy Body dementia after her release from the psychiatric hospital because I researched all the things I was seeing beyond the other two types of dementia).
The most harrowing part of all of this was the geriatric psychiatric hospital.
When I was admitted for the first time the afternoon of July 11, 2010 to change Mama’s commitment to voluntary, with me as the responsible party, and to deliver her bag, my immediate reaction was to rescue Mama and take her home (she actually wasn’t there yet and was rolled up in a wheelchair while I was completing her admission, but she didn’t see me and I don’t know, as bad as her psychosis was then, that she would have recognized me anyway).
It was Bedlam.
The stench from urinary and bowel incontinence from the people walking agitatedly or sitting and screaming in wheelchairs around me literally took my breath away.
The intense chaos and high noise level was so uncomfortable for me that I wanted to take Mama and run far, far away.
The deep compassion and empathy for these people, despite all the other stuff, made my heart break even further and it took all I had not to just melt down into a sobbing mess.
But I held it together for Mama. I was there every day at the times I was allowed to visit. I called every morning first thing and every night last thing to make sure Mama either had a good night or was in bed safely tucked away.
Two weeks of that routine and that place left its indelible mark on me. I can barely think of now without shedding tears.
But the two weeks that followed this day seven years ago got Mama on a medication regimen that alleviated many of the symptoms of her dementias and, all in all, made life more bearable and easier for her.
And for that I’m profoundly grateful. It makes everything before and after worth enduring.
Because in the end, it was always about my Mama, and never about me.
Almost daily, there are reports – from the internet, which is a numbers game in terms of reliability and accuracy of information (the more hits a site gets, the higher it appears in the search engines), not an indicator of expertise and factual information – of “silver bullet” solutions to these neurological diseases.
I suppose, because of the devastating effects of the journey through dementias and Alzheimer’s Disease that our loved ones experience and we, as caregivers, intimately deal with as we go through the journey with them, that we all our susceptible to a measure of magical thinking that leads us to even remotely consider or believe the most outlandish – and patently false – claims that a solution will reverse or cure these irreversible and incurable neurogically degenerative diseases.
What makes me angry about the “silver bullet” solutions that keep cropping up is that they prey on the vulnerable (and that includes us, as caregivers), giving false hope and, often, reaping a huge monetary reward (if they’re selling the “silver bullet” solution) at our expense.
This conduct is shameful. This conduct is cruel.
How can we as caregivers avoid falling into the “silver bullet” solutions trap?
First, we must educate ourselves and study diligently to learn and know the facts about dementias and Alzheimer’s Disease. We must understand the physiology, neurology, and neuroscience of the brain.
Going Gentle Into That Good Night has many, many articles that detail, from a layperson’s point of view, each of the dementias, including Alzheimer’s Disease, as well as factors in their development and the prominent indicators of each type of dementia.
This is not the oversimplified stage progression that the Alzheimer’s Association (which does not include details of exactly what happens in a detailed and sequential way and nor what and how we caregivers successfully navigation through the journey of these diseases).
Without a deep and thorough understanding of how dementias and Alzheimer’s Disease begin (often decades before any overt symptoms appear), progress, and end, we will be susceptible to the false information and misinformation of “silver bullet” solutions, which will do neither our loved ones or us any good, and will only add additional unnecessary suffering to our journeys through these neurological diseases.
Ignoring or avoiding this aspect of our educational process will not make the development of the development and progression of dementias and Alzheimer’s Disease go away. Instead, it will only make the journey for our loved ones and us as caregivers harder, more painful, and more sorrowful than they should be or need to be. The choice is ours.
I see articles all the time (not in just discussing dementias and Alzheimer’s Disease, but everywhere in life) from websites that are clearly not credible – look at the website name first and that will give you good insights into the quality of the information source – (and the information is misleading, at best, and totally false, at worst) presented and endorsed by a surprisingly high number of people as “truth.”
That is because of profound, and in many cases, willing ignorance. We, as caregivers for our loved ones with dementias and Alzheimer’s Disease, cannot afford to be ignorant about these neurological diseases.
There are plenty of snake oil propagators and sales people on the web. They want you to believe them either because they want to make a name for themselves or they want your money. Or both.
It’s that simple. We must be vigilant to not fall for the snake oil propagators and the snake oil sales people. We – and our loved ones with dementias and Alzheimer’s Disease – will be the losers in this equation. Always.
And, fourth, we have to recognize our own capacity for magical thinking. Even as children, we have an innate capacity to believe things that are unrealistic or untrue, but they are how we want them to be.
That is part of being human. While there is an aspect of this ability that feeds imagination and creativity productively, the majority of it leads us to the unhappiness of disappointment, disillusionment, and denial of what’s right in front of our faces.
That does us no good and it does our loved ones with dementias and Alzheimer’s Disease no good. In fact, it does us all a lot of harm in the long run.
We must be willing to confront these neurological diseases head-on, realistically, without the blinders of illusions and false hopes hindering our competent, compassionate, and loving care for our loved ones with dementias and Alzheimer’s Disease.
Recently in one of my caregivers’ support groups, I was asked by of the members if I could give her recommendations on books she could read on how to cope with/get over the intense grief she is still experiencing several months after the death of her grandmother (who had dementia).
My response was that I didn’t know that a book would help her because grief and the grieving process is unique to each of us, especially in the case of dementias because we lose our loved ones with dementias and Alzheimer’s twice: first while they’re still living and then again when they die.
Grief is sometimes very complicated. We all grieve differently, based on our relationships, our personalities, our temperaments, and our experiences in life.
The reality is that no two people ever grieve exactly the same way.
And this is one of those areas of life where people can cause a lot of irreparable damage – and layer even more pain on top of the pain of grieving – by imposing their ideas about grieving (how long, how much, how deeply, etc.) onto those grieving in the form of criticism for and impatience with the process as it unfolds.
None of us can get inside the grief of another human being. We’re not them. We haven’t walked in their shoes. We don’t know everything about them and we don’t know everything they know.
To assume that we do and to turn those assumptions into lectures about how we have been where they have been and we know what they’re going through and we know they’re not “doing it” right is the height of ignorance and arrogance.
Having had several friends in the last couple of months lose a parent and walking through the valley of the shadow of impending death with someone else who is losing a parent right now has brought the grieving process, which I’m still in to one degree or another with both of my parents, and its winding road that it is continuing to carve out in my life, back to the forefront of my mind.
The reality is that grief never really leaves us (it changes over time and it changes us over time, but it also comes right back in full force at you in the oddest moments even after a lot of time has passed).
In the end, grief is the price of love. It’s a high price, but I know that none of us would ever choose not to pay it.
I can’t imagine not having ever had my parents in my life, so even though their deaths have left gaping, sometimes acutely oozing, sometimes intensely aching holes in my heart that will never be repaired in this life, having them both for as long as I was blessed to have them makes this worth it.
Even in those moments when the pain is so strong that I can’t remember it for that instance.
So, for all of us who are somewhere on that continuum of the grieving process, know that grief after death means we loved in life. It doesn’t have a playbook nor does it have a time limit. It will get easier to do over time, but it will be a constant companion for the rest of our lives.
And, when it’s all said and done, that is a very, very good thing. Never forget that.
However, there are a group of neural disorders, which are caused by the same genetic mutation that affects lipid storage in the body, that often have dementia as a secondary symptom as the diseases progress.
There is no cure for these neural disorders and they are all fatal (in many cases, during childhood).
Spingolipids are the biological product of a chemical process that creates a protective layer on nerve cell membranes and ensures proper – and protective – cell signaling and are critical to optimal brain function.
The genesis of sphingolipids are long-chain – also known as sphingoid – bases that normally have a length of 18 carbons, although they can also have lengths of 16 or 20 carbons. The length of long-chain bases is determined by serine palmitoyltransferase (STP), a multiprotein enzyme.
In neural disorders like Niemann-Pick disease, Tay Sachs disease, and Gaucher disease, a mutation (known as Stellar) in one of the proteins that makes up STP creates an abnormally high number of 20 carbon long-chain bases, which dramatically interferes with sphingolipid metabolism.
This causes neurodegeneration to occur. In all these neural disorders, much of the neurodegeneration begins soon after birth.
In Tay Sachs disease, neurodegeneration of the brain and spinal cord begins at about six months of age. The average lifespan is four years.
In Type 1 Gaucher disease, symptoms, which include anemia, bone deterioration, and liver and spleen impairment, are non-neurological and do not materialize until middle age. The average life expectancy for Type 1 is 68 years.
Type 2 and Type 3 Gaucher disease are both neuropathic forms of the disease. Neurodegenerative symptoms include abnormal eye movements, seizures, and systemic brain damage.
In Type 2 Gaucher disease, the onset of symptoms is within three to six months of age. Deterioration is rapid; the average life expectancy is about two years of age.
Type 3 Gaucher disease is a slower onset and involving version of Type 2. The average onset of neurological involvement is late childhood into adolescence. Life expectancy ranges from the mid-twenties to, in extremely rare cases, the early forties.
Niemann-Pick disease Type A occurs in infants. Symptoms include enlargement of the liver and spleen (around three months of age) and a failure to thrive during the first year of life. At one year, widespread damage to the lungs occurs, and there is a progressive loss of neurological and motor function.
Along with Tay Sachs disease,Niemann-Pick disease Type A also has a common eye deformity consistent with neurometabolic disease, known as a cherry spot, that occurs within the macula and is often what initially identifies the two neural disorders.
While most children born with Niemann-Pick disease Type A die in infancy, a few may live as long as four years.
Niemann-Pick disease Type B includes most of the same symptoms as Type A (motor skills are not usually affected), but the onset of symptoms is during adolescence. Most people with Niemann-Pick disease Type B survive into adulthood, but mortality rates climb dramatically between twenty and thirty years of age.
Niemann-Pick disease Type C (C1 and C2 are caused by different gene mutations, but the symptoms are the same) is characterized by severe liver disease, severe pulmonary infections, progressive neurodegeneration, and increasing difficulty with speech and swallowing that deteriorates completely over time.
The onset of Niemann-Pick disease Type C can be at any age, but it is most commonly seen by the age of five. The life expectancy with this type is under twenty years of age when symptoms appear in childhood. When symptoms appear later, the life expectancy is ten to twenty years after symptoms begin.
In this post, we’re going to discuss how temperament factors into these neurological diseases and how we as caregivers can respond effectively and lovingly to provide balance and still meet the basic needs that our loved ones’ temperaments require.
For the purpose of this discussion, we will look at the big picture of temperaments and the two most dominant categories that each of us falls into: extraversion and introversion.
There are 16 distinct variations of these two temperaments (eight in extraversion and eight in introversion). (You can take free temperament test online to see which variation your temperament is.)
All of us fall into one of those 16 variations (for example, I have always and continue to test out as an INTJ). How we fall into them is what makes each of us unique (for example, I range between 92% and 100% for introversion every time I take the test and I suspect that variation depends on the amount of recharging solitude I have immediately had when I take the tests).
Temperaments are, in my view, a function of genetics. In other words, it’s hardwired in us before birth by DNA (nature).
Unlike other things about humans that are more fluid and can change over time, there is little to no effect from external influences that alters our temperaments.
Extroverts in a family that is more introverted don’t become more introverted, no matter how much pressure, spoken or unspoken, is applied to make them less social and more quiet.
By the same token, introverts born into a family (and into the Western world that places a very high value on extraversion) that is more extroverted don’t become more extroverted.
If anything, extroverts and introverts become even more extroverted or introverted because of the pressure applied because it conflicts with who they are at a very core level.
But equally important is whether we as caregivers are introverts or extroverts and how we may need to step outside our natural dominant temperament characteristic to ensure the needs of our loved ones are met.
Extroverts with dementias and Alzheimer’s Disease will continue to crave being social and being with and around people on a regular basis. However, because as neurological changes progress, it is not uncommon to see increased conflicts in social situations (arguing, verbal fighting, anger, etc.) or exaggerated – and sometimes inappropriate – efforts to be the center of attention.
Introverts with dementias and Alzheimer’s Disease will become even more introverted as neurological damage progresses. They will tend to isolate themselves as completely as possible, become completely withdrawn, even from loved ones, and often become completely uncommunicative before they actually lose the ability to speak and communicate.
Neither of these scenarios is good for our loved ones, so it is incumbent upon us as caregivers to try to achieve and maintain as much of a healthy balance for them to meet their needs as is feasible and possible.
In my opinion, this is one of the hardest areas to negotiate effectively and well, and it also requires the most finesse and empathy.
This is especially true if our loved ones and we have different temperaments.
My mom and I were good examples of almost diametrically opposite temperaments. Mama was an ENFP and I am an INTJ. We both had intuition (N) in common, but we were total opposites in every other way, temperamentally.
From day one of our lives together, these differences in our temperaments were a constant source of clashes and contention between us, especially in the early years. Mama would push me continually to be more extroverted and I would push back equally or more tenaciously against it.
Mama would cajole, threaten (and usually follow through because punishment was a better option for me than doing something I could not abide the thought of doing), plead, try to reason, and try to entice me to be more extroverted in a social and a public sense. It never made sense to her that it was agony for me and it literally drained me of all energy and patience.
Ironically, neither my mom and dad (who was also more extroverted than I was, but was an INFJ, so he understood me somewhat better) stopped me at home when I would go off by myself to be by myself, just to get away from everyone else when I was younger and to read, draw, or write when I was older.
But they were both concerned about my lack of desire and enthusiasm to engage in group social activities and to spend a lot of time with other people doing “fun” things. I’m sure there were many bedtime discussions between my parents about me and whether this was normal or was cause for concern.
But eventually, we all sort of adapted (Mama never completely quit trying to push me toward a more extroverted temperament, but when I would finally have a meltdown of yelling and tears in frustration – and sometimes from too little solitude too often – Daddy would intervene and persuade Mama to give me some breathing room and let me regroup, which always worked) and we figured out how to live with and love each other in spite of our differences.
As Mama’s cognitive impairment worsened over the last eight years of her life, she continued to be social and seek social activities and environments. However, as the neurological damage deepened with her, the level and number of conflicts with other people increased.
In the year and a half before Mama was diagnosed with mid-to-late stage vascular dementia and Alzheimer’s Disease, Mama’s relationships with everybody – including me – were much more contentious and much less harmonious.
On a daily basis, Mama would tell me about some dust-up with somebody. Mama had always been a bit on the scrappy side – not in a negative way, but she wasn’t afraid to take people on if they were wrong or she was protecting herself or her loved ones – but she also, because of her intuition, was able to see even the orniest of people objectively and still manage to interact in a positive way, for the most part, with them.
However, as Mama’s paranoia increased, her objectivity decreased and she began to see just about everyone in a more sinister light and as potential enemies. As a result, her social interactions, which she craved, became increasingly tense and hostile.
Just before Mama’s diagnoses and the medications that would balance out the most extreme aspects of the behaviors associated with dementias, Mama exhibited the behavior of an introvert like me.
With a profound hearing loss, Mama depended on hearing aids to connect with the world. Mama would always put her hearing aids on very soon after waking up in the morning so she didn’t miss anything.
In the few months before the inevitable crash that landed her in a geriatric psychiatric hospital, Mama often wouldn’t put her hearing aids in until late in the morning or early in the afternoon.
Mama also started isolating herself, spending the majority of the day in her apartment alone except for the time I spent with her each day.
As I went through her desk and computer when I was trying to make sense of where we were and what I needed to do when she hospitalized, I found that she’d spent a lot of time trying to write, either longhand or on the computer, and as I went through everything, I could see evidence everywhere of steep neurological decline.
It alarmed me to see the rapid progression over a few short months. I can only imagine how much more it must have frightened Mama because she didn’t know what was happening and yet she was aware that everything seemed to be quickly slipping away.
The right combination of medications brought Mama back to her true temperament and it was a relief to me and, I suspect, a relief to her as well.
She was once again involved in a lot of social activities during the day and not only did Mama thoroughly enjoy them, but other people thoroughly enjoyed her (she’d always been the life of the party and a welcome addition to any social gathering).
I made sure to encourage as much social interaction as Mama was up to and I made sure that whatever she needed to be a part of those activities she had. I would often join her in some of them, in spite of my natural aversion to that, because I knew Mama liked having me there with her and I knew that my being there made Mama feel safe.
When Mama came home to live with me, I had to continue to go outside my comfort zone to make sure she had enough social activity and interaction to thrive with her temperament. And, while it was hard at times on me, I never regretted doing that for her.
As the end of Mama’s life was drawing near and she began not knowing who I was on a regular basis and was often unable to recognize people she had known for a long time, I began to cocoon us.
The reasons were because it bothered Mama when she didn’t know people and, because they were strangers, Mama would get fearful (except for me – even when she didn’t know me, she wasn’t afraid of me and she felt safe with me).
So I began keeping the number of people with whom Mama and I interacted small and consistent so that the odds were good that Mama would remember them and so that she would not be scared.
To this day, I struggle with whether I did the right thing by Mama by doing this.
Logically, I know it was the absolute right decision because I didn’t want Mama to feel unsafe or scared.
But emotionally I question whether I should have taken the chance that Mama might have a good day and be glad to see longtime friends.
I still don’t know the answer. That will be just one more of those lingering questions that I’ll probably revisit with no resolution until the day I die.
Dementias of all kinds are on the rise, despite pernicious and false claims that the rate of dementia diagnoses is stabilizing.
With an increasingly toxic planet – air, water, food, soil – our bodies and our brains are suffering irreparable damage over time, and dementias are the neurological manifestation of that damage.
Additionally, we have developed lifestyles – processed and fast foods with chemicals, too much salt, and too much sugar, neurologically-altering drugs (prescription and illegal) that have become the rule, not the exception, and increased alcohol consumption and abuse – that are harmful to our bodies and our brains, resulting in the dramatic rise in both physiological diseases and neurological degeneration.
And to top it off, the general population is getting older – Baby Boomers are about to bust all the rest of us in their old age – and medicine continues its march toward quantity of life (age) instead of quality of life (health).
With all of these factors in play, the reality is that most of us don’t stand a chance of not developing some sort of neurological impairment. It may not be full-blown dementia, but most of us are at high risk.
In some of these things – lifestyle, technology addiction, sleep habits, quality of life versus quantity of life – we have complete control. Our previous habits may have already done irreparable damage, but we have the choice today to say “Enough already!” and change.
But will we?
The pessimist/pragmatist/realist in me says most of us won’t.
I watch myself making every change I can and I watch most of the world around me continuing – even increasing speed and intensity – headlong into the very practices and behaviors we have complete control over that will lead to cognitive impairment.
I have sounded the warning here many times. But I realize that I’m just talking to myself. Nobody else cares, it seems.
At times, I wonder why I care if nobody else does. Talking to yourself is a waste of time, so I often wonder if I’m just wasting my time with this blog. Maybe I am.
But I keep doing the blog because if it helps just one other person on the planet, then that’s one person out of 7.5 billion people that I’ve been able to serve and if I stop, then I stop serving. My conscience and who I am won’t let me do that.
And even if nobody wants to hear it now, maybe in a few years, when I’m dead and gone, and their families are watching them go through the journey of dementias, their families will find this blog and it will help them.
If I leave a legacy, this might be it. I don’t have high hopes for any legacy. People are so hedonistic and narcissistic now that they don’t pay any attention to anything serious or important. I can only imagine that will get worse in the future too.
But even if there’s no use for this information, at least I know I’m doing the best I can to pay what I’ve learned forward and try to help others. The choice of whether they want to learn or ignore is theirs, not mine.
Three years ago today at 5:50 pm, my mama’s journey through dementias, Alzheimer’s Disease, and congestive heart failure ended.
With Mama’s death, like my daddy’s death almost 17 years ago, each anniversary seems like yesterday and forever at the same time.
But I’m thankful for the memories to help me try to cope with the permanent voids of their losses in my heart and in my life and I’m thankful for the hope that I’ll see them again whole and healed.
I promised you and Daddy both that I’d be there. God’s willing and so am I. So even on the days when it feels like life is just unbearable torment I continue to put one foot in front of the other with God’s help, enduring, persevering, and continuing to grow in that faith and walking toward fulfilling that promise, even if it doesn’t look like it and nobody else can tell.
But you, Mama, and Daddy would know if you were here and you’ll know when I’m there. That’s often the only comfort I have these days. And maybe that’s all I need when I can see that comfort through the pain. I know it’s worth it because I watched you and Daddy and I learned from both of you.
So I’m remembering you publicly today, Mama, just like I do privately every day of my life. I love you. I’ll see you soon.
When our loved ones with dementias and Alzheimer’s Disease reach the part of the journey through these neurological diseases where they are unable to handle their own financial and legal matters, we as caregivers have no option but to step in and act for them and in their best interests.
Here in the United States, there is an incomprehensible aversion to planning for the possibility of having to entrust our lives to someone else and for how we want to die.
It’s as though we have this national collective mentality that if we don’t think about it, then it won’t happen.
The bad news? No matter what, it’s still going to happen.
And someone is going to be left holding the bag – maybe the person we would have designated or maybe someone we don’t want making decisions for us – to decide for us.
If it’s a person we trust, then they have the agony of trying to figure out what’s best and what we would have wanted. This is especially agonizing when dealing with end-of-life issues.
Too many people in this position of not knowing what we want, because we refused to talk about it, prolong our suffering and run up needless bills in the process, simply delaying what would have been the inevitable outcome anyway.
If it’s a person we don’t trust, all bets are off. And it is not going to be pretty.
The time to prepare for both of these inevitables – unless we die early and truly unexpectedly (I can’t help but laugh every time I see an obituary for a really elderly person that says they died unexpectedly: suddenly, perhaps; unexpectedly, no) – is when we have the ability to and can make sure what we want to happen happens.
From the standpoint of appointing someone we trust to handle our financial and legal affairs (most of us do an okay job with medical powers of attorney, but even that gets ignored more than it should), a revocable living trust is probably the best and safest way to go.
The benefits of a revocable living trust are:
The person creating it retains control and can revoke control at any time as long as they are competent;
It can be set up with a small amount of money or a piece of property in the trust and the attorney’s fee (varies by state);
The person creating it designates the person/people they trust to handle their legal/financial affairs;
It eliminates the need for a will;
It cannot be legally contested;
The process of transferring control to the designated trustee in the case of incompetency requires a professional (psychiatric) letter with the diagnosis and evidence of incompetency;
It, with the professional letter declaring incompetency, is the only documentation needed for the designated trustee to handle finances and legal matters.
A revocable living trust is probably the easiest way to ensure what we want both in life if we can’t do it ourselves and in death after we’re gone.
However, it is of supreme importance to choose wisely and be absolutely convinced of the trustworthiness of the person we designate to be our trustee.
The bottom line? If we have any doubts as to whether we can trust someone completely, we do not choose them as our trustee.
It will not end well for us – in fact, it could end gruesomely and tragically – and all our careful planning will have been for nothing, to put it mildly.
But what if, as many Americans do, our loved ones with dementias and Alzheimer’s Disease reach the stage where they are not competent to handle their affairs without any legal documents in place?
There are two options, and by the time this is needed, it’s likely that the petitioner (us for our loved ones or our families for us) will need both of them granted.
Both options are very costly (much more expensive than the cost of powers of attorney and a revocable living trust), often take a long time to be granted, and, in many cases, set off a family war, which not only can delay a decision, but can also create irreparable rifts within the family.
One option is guardianship. Guardianships give the petitioner the legal authority to take physical care of the loved one who is incapacitated.
The process to obtaining guardianship begins with getting a professional letter confirming the person for whom guardianship is sought is incompetent to handle their own affairs.
That letter must be taken to an attorney to have a petition drawn up to submit with the letter to the court. The petitioner is responsible for all the attorney fees (general estimates are in the $2500 to $4000 range if the petition is uncontested) and court costs.
The court will decide – slowly – whether to grant the guardianship and the entire process can take several months at the very least.
The second option is a conservatorship. A conservatorship gives the petitioner the legal authority to handle financial and estate matters for of the loved one who is incapacitated.
A conservatorship has the same legal requirements and process as a guardianship and has the same potential problems as well. That’s why if a petitioner has no other choice but to pursue these options, it’s prudent to do both of them at the same time.
There is an additional requirement for the petitioner who is granted a conservatorship for a loved one who is incapacitated. The petitioner will have to file a detailed annual financial report for the estate to the court for review to ensure that the estate is being managed as the court sees fit.
If the petitions for guardianship and conservatorship are uncontested, they will take a much longer time and much, much more money to obtain than having an attorney draw up a revocable living trust that settles everything.
If the guardianship and conservatorship petitions are contested by other family members, it’s conceivable that the legal fight could outlast the loved one who is incapacitated and the amount of money spent to fund the fight would be outrageously high.
We may have no choice in these matters with our loved ones that we are caregivers for, but I urge each of us to consider taking care of these things for ourselves now for our potential caregivers.
We need to tell our families what we want, carewise, for longterm care and at the end of our lives. We need to choose and discuss with the person we want to ensure that our wishes are carried out. We need to get the legal paperwork done and keep one copy in our home safe or a safety deposit box at the bank and give the other copy to the person we designate to carry out our wishes.
We never know when time and chance are going to happen. Today is the day to prepare for that. Tomorrow may be too late.
For each of us who have been or are primary caregivers for our loved ones with dementias and Alzheimer’s Disease (along with comorbid age-related illnesses), we are firsthand witnesses to the physical, emotional, mental, and financial toll it can have on us the caregivers.
But at some point our role as caregivers ends. Dementias and Alzheimer’s Disease are ultimately fatal since the brain affects every part of the body and as the neurological damage of these diseases progress, the damage spreads to the rest of the body.
But it’s been my observation that the caregiver experience leads us in one of two polar opposite directions after our caregiving days are over.
For some caregivers, their path after caregiving leads them toward helping other caregivers who are or will be on the journey through dementias and Alzheimer’s Disease. They do this through blogs – like this one – and books and online and offline support groups.
This path gives an added benefit to the caregivers who choose it: it facilitates the healing process and it often provides a productive journey through the grieving process.
However, for caregivers who choose this path, they learn along the way that there are some things that will never heal in this lifetime and grieving is not a finite process.
The benefit, though, is perspective and acceptance, even in the deeper wounds that won’t quite close up and the unexpected tears that can show up anytime and anywhere no matter how much time has passed.
For other caregivers, though, the path after caregiving is to leave it behind and shut the door on it. In most cases, this is the result of a tremendous amount of pain and loss in their own lives while they were caregivers because of the huge physical, emotional, mental, and financial toll caregiving had on them.
They don’t want to be around anything having to do with caregiving anywhere in their lives: blogs, books, support groups, or even friends and family who are or will be caregivers.
You can literally see this group of caregivers shut down and mentally check out when anything related to caregiving comes up in their lives. They physically, mentally, and emotionally walk away and never look back.
None of us knows what path we’ll choose when our caregiving days for our loved ones with dementias, Alzheimer’s Disease, and age-related illnesses are over.
And what I hope we remember is that neither path, regardless of which we choose, makes us better or worse than those who chose the other path.
For all the similarities we humans share, we each are unique creations who walk unique paths through our lives. I don’t know the details of where or what you have been through and you don’t the details of where and what I’ve been through.
So I urge each of us to be kind, to be empathetic, to be respectful to every other person who has been, who is, who will be a caregiver for loved ones with dementias and Alzheimer’s Disease and age-related illness, regardless of which path they have chosen, choose, or will choose.
Let’s not forget that we’ve all shared the same experience and that creates a bond between us of understanding. We should also remember that, when it’s all said and done, being a caregiver is an incredible act of love that, sadly, in our society more and more people are not willing to make the sacrifice for.
So all of us who have been, who are, and who will be caregivers are incredibly loving people who made the sacrifice, just like the loved ones we care for did with us, at, sometimes, a huge personal cost to themselves for the rest of their lives.
The path we choose afterward is often self-protective and a path toward some sort of wholeness. And that’s okay, even if it’s not the path we chose, choose, or will choose.
There is no right or wrong in the path after caregiving. It depends on each one of us which direction we take. But let’s don’t attack, don’t condemn, don’t criticize our fellow travelers in this journey because they choose a different path than we did after the journey with our loved ones with dementias and Alzheimer’s Disease ends.