Since as of September 7, 2017, there are three hurricanes in the Atlantic Basin in the United States (Hurricane Irma, Hurricane Jose, and Hurricane Katia), and it’s fairly certain that Hurricane Irma will affect the southeast coast from Florida to North Carolina, after devastating the Caribbean, and caregiving for our loved ones doesn’t stop just because of weather, here are some tips to help you throughout the crisis (hurricane recovery is long-term). Continue reading
Book Review of “Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients” – Ben Goldacre
Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients by Ben Goldacre (a physician in the United Kingdom) should be on everyone’s reading list.
While I have been more acutely aware for quite some time of the areas of misleading and harm that Goldacre spotlights in this book because of my own experience as the medical advocate and primary caregiver for one of my parents and my subsequent extensive research into Big Pharma, Goldacre digs into the details and presents scary and compelling evidence of the total corruption in the industry. Continue reading
Polypharmacy: A Dangerous and Potentially-Fatal Threat to Seniors
Senior citizens, including our loved ones with dementias and Alzheimer’s Disease, are an especially vulnerable part of the human population to the dangerous – and potentially deadly – risks of drug interactions associated with polypharmacy (coexisting multiple prescription medications/supplements/over-the-counter medications use). Continue reading
How Big Pharma Controls Medication Costs and Availability
Big Pharma has more control over how medicine is practiced in the United States than most of us probably realize. The big pharmaceutical companies have deep pockets – filled by American consumers – and big muscles to exert extreme influence over what gets manufactured (patented or generic medications), how much those medications cost, and how often those medications get prescribed.
Big Pharma has also found back channel ways to keep generic forms, which are less costly, of their patented medications off the market longer and to keep the high prices of those patented medications.
As the end of the exclusive right to be the sole manufacturer of patented medication with no competition nears – 12 years in the United States – on popular medications, pharmaceutical companies begin the race to create generic prescription versions of those medications. The cost to make generic prescription drugs is much less, because the formula is already available and there is no investment cost to develop the medication.
Eventually, many generic prescription medications transition to being available over the counter without a prescription.
There is a lot of money being made, no matter how the medications end up being sold, but the most money can be made on patented prescription medications.
Because of that, the pharmaceutical companies can – and do – charge whatever they want for the medications they hold patents for and the consumer often ends up bearing the brunt of the cost as insurance companies refuse to pay the full cost, or as in the case with Medicare Part D, they don’t pay anything at all while senior citizens are in the “donut hole.”
One of the angles that Big Pharma is using to make more money is that they are creating new, patented medications that combine generic and/or over-the-counter (OTC) medications, which if purchased in their separate generic and/or over-the-counter forms wouldn’t cost very much (compared to the patented medication cost).
An example is Horizon Pharma’s patented pain relief medication, Duexis. Duexis combines two older generic forms of Motrin and Pepcid.
The cost for buying the generic forms of Motrin and Pepcid (over-the-counter) separately for a month would probably be less than $50. Duexis, on the other hand, is $1500 for a month’s prescription.
Since there are generic, over-the-counter forms of Motrin and Pepsid (which insurance doesn’t have to pay for), insurance companies, understandably, don’t want to pay for Duexin.
Paradoxically, though, the sales of Duexin are accelerating rapidly.
How and why?
It turns out Horizon Pharma has joined the trend among pharmaceutical companies to partner with a mail-order specialty pharmacy to ostensibly make filling prescriptions easier for everyone.
Doctors are encouraged (they get reimbursed when they prescribe Duexis or any other patented medication) to submit prescriptions directly to the specialty pharmacy instead of sending the patient to the corner drug store with the prescription.
The pharmacy reimburses doctors and mails the medication to the patient and it deals with getting paid by the insurance companies, most of the time very successfully.
The problem for patients who use Duexis – and any other patented medications – is that their insurance costs and deductibles will increase because of the high cost of Duexis (in many parts of the United States, $1500 is in the higher range of a monthly mortgage payment), so the patients end up paying more on the back end.
Another way that pharmaceutical companies are controlling the price and the availability of prescription medications is to pay competitors – known as reverse settlement payments or pay-to-delay deals – to not create generic versions of their patented medications when the company’s 12-year exclusive rights to manufacture the medication ends.
This has become a common practice in the pharmaceutical industry, where everybody winks and turns a blind eye to the practice, and the courts seem to be unable to find anything illegal about the monopolistic effect of this for consumers who have no options but the original patented medication and who end up paying whatever the pharmaceutical company wants to charge for it.
A third way that pharmaceutical companies control what kinds of prescription medications are available as well as the prices is by both generating a consumer demand for the prescription medications (prescription medications rival cars in paid advertising in all form of media) and by giving incentives – monetary and non-monetary – to medical providers to prescribe their medications.
Essentially, this amounts to the pharmaceutical companies creating the market from both sides of the equation for their medications. Not only is this also illegal, but, once again, consumers – you and me – end up carrying the financial brunt of this well-entrenched system in American healthcare.
Most profoundly affected – and what makes the injustice of this burn inside me – by these practices are are also the most vulnerable, healthwise, in our society: the elderly (with and without dementias) and the chronically-ill (diabetes, hypertension, and many neurological and autoimmune diseases).
These two groups of people, then, are often left with the black and white choice of whether to go broke (and lose everything, in some cases) to treat their health problems or to forego treatment altogether to try to stay financially solvent and hang on to what little they have.
This is pure greed, which is why these pharmaceutical companies are in business. They don’t care about the health of anyone. All they care about is a nice, fat bottom line and big payouts to their shareholders and to their executives.
And they have the control, so they can do whatever they want and you and I, either for ourselves or for our loved ones, have to make the choice to dance with them or not.
Help is Available to Pay for the Medications Our Loved Ones With Dementias and Alzheimer’s Disease Need
On top of the devastating neurological, physical, and emotional toll that dementias and Alzheimer’s Disease have on our loved ones, the cost of care – hospital equipment, adaptive devices, supplies, and medications – even when we as caregivers are carrying a fair share of that burden is often financially overwhelming.
Most costly, especially for our loved ones who depend on Medicare (and, hopefully, a Part B supplemental policy and a prescription plan), are the prescription medications used to help manage symptoms and behaviors associated with dementias and Alzheimer’s Disease.
Very few of these medications have generic equivalents, so there is no other option but to buy the Big Pharma patented – and outrageously expensive – medications.
When our loved ones with dementias and Alzheimer’s Disease who are covered by Medicare hit the “donut hole” of coverage, the prescription costs go through the roof because they are billed at full price.
However, there are options available for assistance with paying for these medications all year round.
I’ll summarize the options here:
- Do your homework before filling the prescriptions. Big-box retail stores like WalMart and Sam’s Club (Costco and BJ’s as well) have more affordable prices than stores that are specifically geared around selling medication (CVS, Walgreen’s, etc.). Independent pharmacies may be able to give a better price as well.
- If the PCP prescribes a medication that the insurance plan doesn’t cover, you can appeal for coverage.
- The insurance plan will send a letter of denial.
- Make sure that the PCP provides documentation that the medication is medically necessary.
- Contact your state’s regulator to ask for a free independent medical review.
- Financial assistance may be available.
- NeedyMeds is a national non-profit organization that helps connect people with financial assistance.
- Other non-profits who may be able to help with financial assistance for prescription medication are: Partnership for Prescription Assistance, Patient Services, Inc., and Patient Advocate Foundation’s National Financial Resource Directory.
- Financial assistance – and sometimes free medications – is also available from pharmaceutical companies for medications that are still patented (there are no generic equivalents).
A note from my own experience will save you a lot of time, aggravation, and trouble. Having a PCP or a geriatric psychiatrist deal with the pharmaceutical companies for assistance with patented medications will get the fastest and best results.
The pharmaceutical companies have applications for assistance that the PCP or geriatric psychiatrist will provide. You will have to provide income statements, Medicare expenses already paid, and other expenses related to care. Include everything!
The PCP or geriatric psychiatrist will submit the paperwork and if it is approved, the medication will be sent to them and dispensed from them. The good news is that once you’re in, you don’t have to redo the paperwork again.
Another thing to be aware of is that these programs are not designed just to assist the most economically-disadvantaged members of our society.
The middle-class, which is the largest segment of American society, is feeling the financial squeeze on all fronts more than any other group (and if we are taking prescription medication, we can use some of these resources too for financial assistance to help pay for them). Even though our loved ones with dementia and Alzheimer’s Disease may have pensions, Social Security, and Medicare coverage, the costs of living – and dying – are far outpacing what they have coming in each month.
So this is a potential lifeboat to keep them as financially solvent as possible, while ensuring that they have the medication they need.
The Layperson’s Guide to Palliative Care for Our Loved Ones with Dementias and Alzheimer’s Disease
In the post “The Layperson’s Guide to Home Health Care for Our Loved Ones with Dementias and Alzheimer’s Disease,” we discussed what home health care is, when it should and can be used, and what services it provides.
In this post, we will discuss what palliative health care is, when and why it should and can be used, and what services it provides at home for our loved ones with dementias and Alzheimer’s Disease.
Although, as any caregiver can tell you, dementias and Alzheimer’s Disease are always on the radar with our loved ones who have these neurological diseases, there are often other health-related and age-related illnesses that our loved ones are also dealing with, especially if they’re elderly.
Home health care services are available – and should be used – when there is an acute medical condition that needs to be monitored and resolved (if possible) after our loved ones are discharge from a medical facility. Examples of acute medical conditions can include hard-to-manage/uncontrollable blood pressure, diabetes, life-threatening cardiac events, pneumonia, embolisms, strokes, and joint replacements.
As soon as the acute medical condition no longer exists, home health care services are no longer available. However, most home health care agencies have an intermediate health care option between home health care and hospice (end-of-life, with very specific criteria, which we’ll discuss in the next post) care.
That intermediate option is palliative health care at home.
Palliative health care provides home health care services when someone has a serious long-term or terminal illness, but death is not imminent or the prognosis is longer than six months.
Palliative health care provides life-prolonging and curative treatments – just as home health care does – as well as providing pain management and symptomatic relief.
Palliative health care offers the same interdisciplinary team and services that home health care offers: nurses (visits are usually one a week), physical therapists, occupational therapists, speech therapists, home care aides to help with daily activities like bathing, if necessary, and 24/7 nursing/medical support.
Like home health care, this palliative health care team’s manager is the nurse who coordinates and collaborates with the primary care physician and other palliative health care staff.
Palliative health care is an excellent bridge that gives us and our loved ones time to find, consider, and agree on options for care without being rushed into making a decision without having all the facts, discussing and understanding them, and being ready to live (or die) with them.
The goals of palliative health care are different than home health care. With the knowledge that death is the eventual outcome, the emphasis of palliative health care is in the following areas:
- Comfort and relief from physical symptoms like pain, nausea, fluid retention, and shortness of breath
- Communication and coordination of issues, treatments, and needs among doctors (although at this point, I’d personally recommend – and this is what Mom and I agreed to – just working with a primary care physician), other palliative health care staff, our loved ones with dementias and Alzheimer’s Disease and us
- Time to pursue treatment options, if wanted, and time to prepare for death (discussing death, ensuring that all “loose ends” are tied up, meeting personal goals, and saying goodbye)
Since most home health care agencies have a palliative health care program, the transition is easy – either we and our loved ones or the home health care nurse will ask the primary care physician to write an order – and seamless – the same team of nurses and therapists continues throughout the palliative health care phase of care.
Some palliative health care programs have social workers and clergy on staff to help with any community-based services that may be needed in the home and to offer bereavement counseling.
The palliative health care program that Mom was in did not have those services, but we were self-sufficient in terms of a social worker and we had enough spiritual support from our close-knit group of long-time friends within our church family.
Palliative health care should be, at some point, a part of the care we ensure is in place for our loved ones with dementias and Alzheimer’s Disease.
Most people don’t even realize this option is available – and our loved ones do not have to have been receiving home health care services to receive palliative care – and that is one of the reasons I wanted to explain what it is, what is does, and why it’s a crucial part of the team approach to care that we lead for our loved ones.
In the next post, and the last one in this series, we’ll discuss hospice care.
The Rare Dementias: Corticobasal Degeneration (CBD)
Corticobasal degeneration (CBD) – also known as corticobasal ganglionic degeneration (CBGD) – is a rare (occurs in less than 1% of the population) and progressive form of dementia.
The onset of symptoms typically occurs after the age of 60 and the average duration of the disease from onset of symptoms to death is six years.
Although the underlying cause of CBD is unknown, what is known is that CBD is the result of extensive and severe damage in multiple areas of the brain.
Research into this form of dementia is relatively new (it was discovered in 1968), but the most current research has found that there are similar, but not identical, changes in the brain protein tau to the changes observed in progressive supranuclear palsy and Pick’s Disease.
These areas of the brain where damage is extensive include the cortex (especially in the frontal lobe and parietal lobes) and the deep-brain basal ganglia region of the brain, with the hallmark feature in that area being significant neuron degeneration and the loss of pigment in dopaminergic neurons (signifying a decrease in dopamine production) in the substantia nigra, which controls movement.
Dopamine is a chemical produced by the brain (a neurotransmitter) that plays a leading role in movement, memory, pleasure, cognition, behavior, attention, sleep, and mood.
When dopamine production decreases in the substantia nigra, movement is severely affected.
Often this is the first visible symptom of CBD. It presents as stiff movement, shaky movement, jerky movement, slow movement, and increased lack of balance, increased lack of coordination, and clumsiness. Generally, movement problems affect one side of the body almost exclusively, but as CBD progresses, both sides of the body are affected.
Since these movement disorders can mimic both Parkinson’s Disease and the effects of a deep-brain stroke – one of the classic movement disorders associated with these is ideomotor apraxia (a common example is the inability to initiate walking where the foot seems to be stuck to the floor and can’t be lifted spontaneously to take a step forward) – those must be ruled out as the causes of the movement disorders.
Other early symptoms of CBD can include difficulty controlling the mouth muscles, cognition problems, and behavioral problems. Language and speech difficulties – dysphasia (an impaired ability to understand or use the spoken word) and dysarithia (an impaired ability to clearly articulate the spoken word) – are also early CBD symptoms.
(In my latest book, You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease, I devote a whole chapter to a comprehensive and in-depth discussion of the communication problems, including the different types of dysphasia, that occur with dementias and Alzheimer’s Disease, and ways to work with our loved ones to keep the lines of communication open for as long as possible.)
It is not unusual for CBD to be initially diagnosed, if the first symptoms are cognitive impairment and/or behavioral issues, as Alzheimer’s Disease or frontotemporal dementia. Similarly, if movement disorders are the first symptoms, CBD is often initially diagnosed as Parkinson’s Disease.
However, a clear diagnosis of CBD is usually made when both movement disorders and cognitive impairment and/or behavior problems appear simultaneously.
There is no known treatment for CBD. Unlike Parkinson’s Disease where dopamine-enhancing or dopamine-mimicking medications prove to be effective for some of the duration of the disease, these drugs have proven to be ineffective for treating CBD (this is likely because of the very different pathologies in the development and progression of the two diseases).
In the early stages of CBD, speech therapy and physical therapy may help with communication and stiffness and movement. However, as the disease progresses, these will become less effective and, in the end stage, they will be completely ineffective.
As CBD progresses, other symptoms appear and worsen, including:
- Involuntary muscle contractions
- Involuntary eyelid spasms
- Loss of sensory functions
- “Alien hand/limb” syndrome (hand or limb movement that the person isn’t aware of nor has control over)
Because of the increased rigidity and lack of muscle coordination and use as CBD progresses, usually within five years of onset, sufferers will be unable to swallow and will be completely immobile. Even before this, though, one of the potentially-fatal risks associated with CDB is aspiration of food into the lungs because of impaired swallowing and the high likelihood of pneumonia as a result.
While a feeding tube may be considered as an alternative when CBD has progressed to the point where swallowing is significantly affected, it is, in my opinion, inhumane because it only prolongs the suffering from a disease that is ultimately fatal.
This is a quality-of-life choice. I can’t imagine for myself a life prolonged where I am completely immobile and completely dependent on everyone else for everything and I can do nothing for myself.
A feeding tube would be my worst nightmare. And for me, it would be the most cruel thing those in charge of making medical decisions for me could do to me.
Fortunately, I already have all my documents in place to make sure this can’t and won’t happen to me when and if the time comes that the choice needs to be made, because I’ve already made the choices.
So, as an aside, I would strongly urge everyone who reads this to get your wishes formalized and signed and communicated so that you have control over the end game of your life in this area.
Not only is the wise and prudent thing to do, but it eliminates the agony of wondering what to do so often seen in families where the person affected never talked about what he or she wanted and never took the time to answer these questions when he or she could.
New Book: “You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease”
I’ve just written and published my newest book, You Oughta Know: Recognizing, Acknowledging, and Responding to the Steps in the Journey Through Dementias and Alzheimer’s Disease.
It is available in both paperback and Kindle versions.
I’ll include the short summary from Amazon I wrote for the book:
“This book looks comprehensively at all the steps that occur in dementias and Alzheimer’s Disease.
In my own experience with this and in counseling, supporting, and working with others who are going through these steps, I realized there is a basic lack of comprehension about the big picture of how these neurological diseases progress.
I know that because the same questions get asked and answered over and over again.
My purpose is to ask those questions and answer them in a way that, first, makes sense, and, second, works for everybody involved.
I know. I’ve been on the caregiving side of the equation personally. There were no books like this when I did it, so I had to learn on my own and figure out what worked and what didn’t. I made mistakes. You’ll make mistakes.
But, in the end, my mom and whoever you love and are caring for, got the best we have to give and we can learn some pretty incredible and good life lessons along the way.
If you don’t read another book on this subject, you should read this one. I don’t have all the answers, but the answers I have learned are the ones that probably matter most.
Not just now, but for the rest of our lives.”
This book also includes the last step that we take alone without our loved ones: grief. I’ve been there and I’ve done that and although I will never not feel the grief on some level, I’ve learned some lessons that I know will help each of you.
If You Needed Help, Does Anyone Have What They Need From You to Step Up to the Plate?
Kay Bransford and I seem to be on the same page a lot these days, but I see that we seem to be the only ones willing to tackle these subjects, so I guess we will keep sounding the drums that all of us need to be preparing in advance for the possibility that something – whether it’s Alzheimer’s Disease, dementias, other life-threatening illnesses, or simply time and chance – could suddenly and dramatically or slowly and insidiously render us incapable of taking care of our own affairs.
It seems to me that the very thing we try most to avoid thinking about, talking about, planning for is the very thing that will eventually happen to us all. And that is death.
Denial is, in my opinion, stronger and more pervasive in this area of life than in any other. “If I don’t think about it, then it isn’t real” seems to be the underlying thinking of this denial. I’m here to tell you that all the denial in the world won’t take away its inevitability of happening.
None of us, except those who chose to usurp God’s will and end their own lives, know how or when we’re going to die.
I believe most of us assume it will be quick and instantaneously, but the reality is that, in all likelihood, most of us will probably have a period of decline in which we will need help handling our financial, legal, and medical affairs before we take our last breaths.
And, after we take our last breaths, someone will have to take care of getting us buried and ending our financial, legal, and medical status among the living.
Who would that be for you? Yes, you, the one who is reading this post. Do you know? Does that person know? If that person knows, have you made this as easy as possible for him or her by doing your part and making sure he or she has everything he or she needs to do what needs to be done?
Or, because you don’t want to think about it or talk about, will that person have the burdensome responsibility of trying to figure it out all on his or her own?
We say we don’t want to be burdens to our loved ones. By taking care of this, you and I – we – have taken a big step toward easing the magnitude of that burden that, if we live long enough, will be shouldered by our loved ones.
I did my first will and living will shortly after I turned 21. I had just graduated from college, but not before having a very serious car accident (one that I miraculously survived with some significant injuries, but nothing like what I should have suffered) just before I graduated.
I’d never been that close to being face-to-face with death before, but it made me realize that I needed to make sure that my affairs – and they were paltry in those days but even then I had life insurance – were in order for the ones I’d leave behind.
From that point on, I have been meticulous about keeping my will up-to-date, the beneficiaries on my insurance policies up-to-date, and all the information my executor will need to take care of things up-to-date. I added a DNR to my medical wishes about 20 years ago, I got my cemetery plot 15 years ago, and I wrote out my funeral service and burial wishes about 10 years ago.
Additionally, my executor has updated access and account information to everything online and offline to finish up my earthly affairs when I’m gone.
This, in my opinion, is the last act of kindness I can do in this physical life. It is also one of the greatest.
Mama used to worry that something would happen to me (i.e., that I would die before she did) and then about what would happen to her. There were times in our lives together that could have been a possibility, but I always reassured her that I’d be there with her to the end. And I was by the grace of God.
Of my parents, Daddy was a paradox when it came to this subject. On the one hand, he had life insurance that would take care of Mama after his death and he insisted, in the year before his death, that Mama get her own checking and savings accounts and get credit cards in her name only.
On the other hand, there were other areas in which he had great difficulty facing his mortality. I remember Mama suggesting that they start getting rid of clothes and other things they weren’t wearing or using anymore and Daddy’s response: “the girls can take care of that.”
The will that Daddy had in effect, until shortly before his death, was the one that he had drawn up just after he and Mama adopted us. None of the information was pertinent or relevant anymore.
After much and extended (I’m talking a couple of years) discussion between Mama and him, they finally went to a lawyer, about six weeks before he died, to have a current will drawn up.
Mama was just the opposite. Somehow, I think all the deaths of close and beloved relatives in her early years made the inevitability of death more real to her. She, primarily, during our growing up years, talked on a regular basis about what would happen to us if she and Daddy died and how we needed to take care of each other and be good kids so the road without them would be easier for us.
Not long after Daddy died, she and I sat down together (I was now checking in daily and helping her navigate through some of the things that Daddy had done and offering advice and assistance as she needed it) and she told me what she wanted – and didn’t want – as far as end-of-life wishes.
We went to an attorney together and she did a will (which she later changed to a revocable living trust), living will, and all the POA paperwork. I had copies, she had copies, and she put copies in a safety deposit box at the bank.
At that time, I didn’t need or want knowledge or access to her financial accounts, but as time went on, she needed more of my help in dealing with them, so she gave me access to get into the accounts and help her (we always sat down and did this together until she wasn’t able to anymore) keep up with bills and what she had.
By doing this with me, Mama made things much easier for me when the time came that I had to step in because she couldn’t do it.
I can’t thank Mama enough for her foresight with this gift. Instead of having to focus on everything brand new coming at me at once, I could focus on what was most important, and that was Mama: loving her, caring for her, being there for her.
The last couple of months Mama was alive, we’d be sitting close, holding hands, and talking and suddenly she’d say “I don’t want be a burden on you,” with tears rolling down her cheeks. I’d squeeze her hands and pull her closer in a hug, kissing the tears away from her cheeks, saying, “Mama, you’re not a burden to me. I love you unconditionally. I wouldn’t be anywhere else doing anything else but right here doing this with you.”
Mama would relax in my embrace and I would hold her tighter as I said these words because they were true and we both recognized that they were true, but most of all, I recognized how easy Mama had made things for me by equipping me with what I needed to step in easily and take care of the routine things so that I could save my energy, my focus, and my love for taking care of her.
Medical Advocacy and Support and Dementias and Alzheimer’s Disease
Author’s note: I originally posted this in June 2013. I am posting it again because it is one of the most important ways in which we can help and support our loved ones with dementias, Alzheimer’s Disease, and other age-related illnesses.
I see and hear so many cases of our families not preparing ourselves and our loved ones for the end of life. The reality is that we’re all going to die. It’s imperative that we make sure that our wishes at the end of life are not only clear to those who will make the decisions for us, but also legally binding.
Today is the day to get your wishes in order and to get the necessary legal documents in place to make sure your wishes are adhered to.
Today is also the day for making sure that your loved ones know what you want at the end of your life (I have a DNR and no-extraordinary-measures living will in place with my POA – when it’s time, they know to just let me go).
Spare your loved ones the agony of trying to decide, in a time of stress and crisis, what you would want. If they know, that is one of the greatest acts of love you can give them.
Most people are reticent about the future and death, but by avoiding doing that very thing, you are putting to the people you love most in an untenable position. Making arrangements and making them clear to those you love and leave behind is the greatest act of love you can show them.
You will die. I will die. That’s a fact of living. How we die and when we die rests in the hands of God. But we have the ability to make sure that, through living wills and DNRs, we don’t make things harder for our loved ones who have to let us go and for the will of God to be accomplished for us.
“Going Gentle Into That Good Night: A Practical and Informative Guide For Fulfilling the Circle of Life For Our Loved Ones with Dementias and Alzheimer’s Disease” offers a more comprehensive list of the areas in which we can offer help and support to our loved ones.
Today’s post will discuss our role as medical advocates and medical support for our loved ones suffering from dementias and Alzheimer’s disease. Here I will provide practical advice and suggestions, from my own experience, in managing the medical aspect as easy, as straightforward, and as un-disruptive for our loved ones as possible.
The very first thing we need to do as caregivers is to make sure medical wishes and medical legal authority – medical power of attorney – are documented and authorized (primary care physicians can do this; I suggest getting them notarized as well). Hopefully, these have been discussed enough so that either our loved ones have already taken care of them or we know what they want and are able to execute them ourselves.
For anyone reading this who is not a caregiver or suffering from dementias and Alzheimer’s Disease, now is the time to think about these because time and chance happen to us all. For those of us who are caregivers, these are documents we need to locate and keep in one place.
A medical power of attorney document designates who will make decisions when the person drawing up the document is unable to.
A living will essentially specifies whether a person wants everything done possible to keep them alive, no matter how long, how futile, and how expensive or whether only comfort care is given when it’s clear that the end of life is at hand.
A DNR (Do Not Resuscitate) document states that the person does not want to be resuscitated if he or she stops breathing.
I suggest getting a briefcase or backpack to keep all the documents related to the medical care for our loved ones in. The briefcase or backpack should be accessible at all times, so it goes everywhere we and our loved ones go.
The medical power of attorney, living will, and DNR should be kept together in a folder in the briefcase or backpack. The other items in this backpack should include medical history documents and an up-to-date list of of medications (I’ve attached a sample Excel spreadsheet you can download and for this). Get an inexpensive wallet to put a photo id and Medicare Part A and Part B cards in and keep that in the briefcase or backpack as well. Always have something (electronic or pen and paper) to take notes with.
It is important to remember that we caretakers have a responsibility to advocate for our loved ones with dementias and Alzheimer’s Disease with all medical professionals (primary care physicians, psychiatrists, nurses, dentists, hospital staff, home health staff, and hospice staff). However, it is equally important to remember that, unless our loved ones are in the dying process and, therefore, unresponsive, that we need to include them in all conversations, explain to them what is being discussed and why, and make sure the medical personnel include them as well.
While our loved ones may not understand everything, we must not treat nor let anyone else treat them as if they are invisible. This is probably one of the greatest gifts of love and respect we can show them.
We have to usually initiate this by stopping the conversation the medical professional is having with us, turn to our loved ones and hold their hands, make eye contact, and explain. Eventually, the medical professional will make eye contact with both us and our loved ones.
The reality is that we don’t really know how much our loved ones comprehend or understand. It’s my personal belief that they understand more than the diseases allow them to respond to. I also know that touch and inclusion are two basic needs we all share as humans, so it’s essential that our loved ones never feel excluded or unloved.
Hospitalizations are hard on elderly people. I don’t know all the reasons why, so I wouldn’t begin to speculate (although I have some opinions about it) as to why. For our loved ones with dementias and Alzheimer’s Disease, hospitalizations are not just hard, but extremely traumatic because of unfamiliarity of everything: people, place, and routine. Going into a hospitalization, we as caregivers must be aware that it will be a setback for our loved ones when they come home.
Because of the traumatic effect of hospitalizations on our loved ones, it is critical that we as caregivers stay with them as much as we’re able during the hospitalizations. We are, even if some of the time they don’t know who we are, familiar. And our presence can help neutralize some of the fear and anxiety that often occurs during hospitalizations.
Always have a “hospital bag” with clothes, toiletries, and other things our loved ones need packed. That bag goes every time we take our loved ones to the ER or with us as we follow an EMS transport. (It is imperative to be sure to wash the clothes from the hospital stay immediately and separately from any other laundry when we get home.)
Spend the night for as long as our loved ones are hospitalized. I know, because I’ve spent way more nights than I could ever count with my mom – even before her dementias and Alzheimer’s Disease diagnoses because I didn’t want her to be all alone – in the hospital, that there’s iffy sleep, awful coffee, and not-so-great food. But our loved ones are worth it.
But spending the night has an additional, and equally-important, benefit. Most doctors make rounds between 7 pm and 8 pm in the evening and between 6 am and 8 am in the morning, so by spending the night we’re always there when the doctors are there so we can be current on what’s going on with our loved ones. I’ve found that, in general, hospital nurses either don’t know much or are too busy to take the time to give you real updates, so the only in-depth information you’re going to get will be from the doctors.
The other benefit of staying with our loved ones is that we can make sure they get the quality care and attention they need. It’s been my experience that most hospitals simply to don’t have enough staff to provide much personalized care, so if there is no one there with the patient, the patient just has to wait until someone gets around to him or her. By us being there, we can ensure that our loved ones are clean, taken care of, and not uncomfortable in any way physically. That’s one of the best ways we can serve them.
As I mentioned, expect a setback after hospitalization. It can last anywhere from a few days to a couple of weeks. Recovery will eventually occur, but it’s important to know that it will never return to the pre-hospitalization state. That’s just the nature of these diseases.
It’s important to be patient, loving, kind, gentle, and tender no matter what. It’s my opinion that most of the behavior is a way of expressing fear, so it’s important that we allay those fears and help our loved ones feel safe again. It takes time and a lot of deep breaths sometimes, but this is another way we show them how much we love them.