What if my number comes up early?

Sometimes when I need a break from my personal feelings, experiences, and thoughts I turn to processes and facts. As a result, this is Part 3 of my very unplanned three part series of “Things Your Mother Never Told You About Dementia”. Or “Deep (Moderate) Dive Into Dementia”. Or, “Dementia: Facts From the Internet Mixed With My Observations”. Your choice.

No matter what my 15 year old self thought, sixty-five is NOT old. In fact, many of us Baby Boomers (born 1946-1964) And Generation Xers (born 1965-1976) are nowhere near ready to retire and are definitely an integral and valued part of the workforce. Maybe you’re finally able to pursue the type of work YOU want to do or you’re interested in exploring other opportunities to begin your next chapter of life. Either way, we’re far from ready to call it a day. However, what if you are diagnosed with early onset Alzheimer’s or any other terminal disease? According to the Mayo Clinic's page on early onset Alzheimer's, “of all the people who have Alzheimer's disease, about 5 percent develop symptoms before age 65. So, if 4 million Americans have Alzheimer's, at least 200,000 people have the early-onset form of the disease”. In addition, “most people with early-onset Alzheimer’s develop symptoms of the disease in their 40s and 50s”. A diagnosis at any age is terrible, but for it to start at an age where you’re just hitting your stride is, in my imagination, devastating.

In just thinking about it, I can’t begin to imagine what that would be like knowing there is no cure and no hope for remission. It would simply and horribly be a new reality filled with care plans, specialists, and dread for what is to come, especially since I’ve seen it first hand. I’m not saying that everything joyful would come to an end, far from it. In fact, I’ve found that when faced with a future I didn’t plan I tend to appreciate the moments of calm and happiness a little more. Even so, I’m guessing that what is to come would always be in the back of my mind.

If you are younger than 65 and are having some symptoms that you and your family find worrisome and dementia is the cause, it could easily be years before you get the correct diagnosis. Most health care providers don’t necessarily look for dementia in someone that young; in addition, dementia isn’t easy to diagnose, especially when it is most likely far down on the list of possible issues, syndromes, or diseases. As I’ve written in a previous blog post, the early signs of dementia could easily be mistaken for symptoms of depression, stress, menopause, or anxiety all of which are fairly common in those of us in middle-age.

Let’s say, for instance, Tom is 55, employed, and is diagnosed with early onset dementia. If he has worked a certain amount of time and has paid social security taxes then he would be eligible for Social Security Disability Insurance benefits, or SSDI. But it’s not that easy.  At 55, Tom may still have minor children at home, a mortgage, and all the costs that come along with middle age. If he is unable to work and he and his wife are relying on a second income, or he is the main income earner and he and his family are insured through his employer, day to day life has the potential to get very stressful and very expensive very fast.

Usually, to collect SSDI, a person must wait five months after the determination of disability before collecting benefits in the sixth month. This is to ensure that it is indeed a long term disability rather than a short term one. However, there is a list of disabilities, including early onset Alzheimer’s, that qualify for expedited consideration which is called a "Compassionate Allowance", meaning approval can be as early as ten days. In reality the process can still take months; many times these patient’s applications are initially denied benefits but then approved on appeal. It’s not an easy process to begin with and added to the stress of a life-changing diagnosis it can make the hurdle seem insurmountable unless you know where to ask for help. It’s understandable how people can fall through the cracks and never complete or even start the process to begin with.

A quick explanation of SSDI along with a checklist to make sure you have what you need to apply for SSDI can be found at The Alzheimer's Association's  website. Included in the checklist are links to specific pages within Social Security’s website including this one on applying for disability along with online forms and links to your local Social Security office.

After a diagnosis there are a few other things to look into in addition to SSDI; there may be some kind of employer sponsored disability insurance available, the Family and Medical Leave Act (FMLA) could provide up to twelve weeks unpaid leave with continued medical insurance coverage, COBRA, Medicare (available for those with early onset Alzheimer’s under the age of 65 who have received SSDI benefits for 24 months), and retirement benefits (consult a certified financial planner to ensure you don’t take bigger tax hit than necessary). I’ll leave it at that since I am nowhere near an expert but would be remiss if I didn’t at least mention additional options.

I hope that none of us is ever faced with this or any other terminal disease but the odds are against that. We are our own best advocates; remember to take care of yourself and never stop learning, asking questions, and treating yourself as well as you treat those you love. Your health and your presence is the best gift you can give them.

Is it normal aging or is it dementia?

My last post was about the ten most common conditions that can look like the onset of dementia; this time, I thought I’d talk about the ten most common warning signs of dementia. The sad part is, this disease is usually so insidious that by the time dementia is suspected and investigated, a person can be well over four years into the disease. Some of the early warning signs such as forgetfulness, loss of concentration, and withdrawal from social situations can also be the result of depression, anxiety, or stress. In many cases, these symptoms are by-products of exactly that and can be treated with medication and/or therapy.

I still don’t know exactly when things took a turn for mom. She had developed what I would call “amplified” versions of her normal personality traits over a number of years; however, I think a lot of that could have been attributed to her developing a routine and not wanting to step too far away from her comfort zone. All perfectly normal, until they’re not. Hindsight being what it is, when I read through the early signs of dementia, I could instantly apply them to mom’s behavior. Even with all that, the lines can still get blurred. What’s normal and what’s not?

Ten Early Warning Signs of Dementia

1) Memory loss that is disruptive to daily life. Forgetting a random appointment now and then has happened to all of us. Two or three times a year is perfectly normal; we get busy and things sometimes fall through the cracks. The first thing that comes to mind concerning mom is I used to call her at 10 am every Saturday morning and we’d talk for one hour - nothing more, nothing less. This was her idea since it fit into her schedule and we did it for years. Then it started changing - she would act surprised I was calling, she’d be done talking in ten minutes, or she would seem really distracted. I couldn't figure out what was going on then but, looking back, it’s most likely she wasn’t able to recall what she had done in the last week and me asking specific questions probably made her very uncomfortable.

2) Retaining recent information or solving problems becomes a challenge. Mom has always been a list maker and when she discovered Post-It Notes it was a coup for her and for 3M. However, when we went to empty her apartment I was shocked at the number of notes and lists that were everywhere, even in her car. Some of the notes were a little odd: “Car is parked on the left”, “Sue called and her husband is sick”, “Melissa has a new job”, “Saw Marjorie and she looks good”, “The movie we went to on Sunday was Jurassic Park.” A lot of them seemed to be there for her to use as a reference or a prompt for when she was having a phone conversation.

3) Difficulty performing or finishing everyday tasks at home or at work. Mom had apparently stopped cooking and using the microwave, something that she used to do on some level every day. She had also stopped driving but for how long I have no idea. One of her water aerobics friends later told me that mom had asked her to lead the way back from the gym to mom’s apartment - where mom had lived for almost thirty years.

4) Confusion with days, time, seasons, or places. Most of us have had a moment when we think it’s Sunday but it’s really Saturday as in, “I’ve been thinking it was Sunday all day.” Once we’ve clued in, what day it is usually sticks - perfectly normal. Over a short span of time before her diagnosis, I had noticed that mom was progressively forgetting important dates or events, even those she wrote down, which was very unlike her. If I mentioned it she would get irritated or change the subject so I didn’t push. Now, she doesn’t know what day or month it is, or even the season.

5) Changes in visual perception. Most of us can use steps or step down off a curb with hardly a thought. A change in gait or a hesitation where there was once none can be a sign of cognitive change or failing eyesight. Hopefully, it’s the latter. Looking back on one of mom’s last visits here, she was extremely cautious getting out of her chair and walking around the hassock - enough to where Bill and I both noticed and, at this time, she had no problem with mobility. She also insisted on nightlights in the bedroom she was sleeping in, down the hall, and in the bathroom where before, one in the hall was plenty. Not a big deal, just peculiar. Once again, we just thought her weird idiosyncrasies were just getting weirder.

6) Unusual problems with words in both speaking and writing. Having a word or a name on the tip of our tongue but not being able to come up with it happens to all of us. Losing track in the middle of a conversation, or no longer having the ability to follow verbal cues or answer simple questions can be signs of trouble. We could always tell when mom was losing interest in a conversation but when she started losing track of what we were talking about or saying something that didn’t fit we knew it wasn’t normal behavior.

7) Misplacing things and not having the ability to retrace steps to find them. This is where the all too common “someone is stealing my stuff” comes in. Mom has always had all kinds of tiny decorative boxes sitting around and she was forever placing something in one of them and then forgetting which one but, eventually, she’d remember. If she does that now it can be weeks before we find the missing thing in the back of a drawer, in the refrigerator, or in a pocket of something she rarely wears. For a while, she was convinced someone was stealing her underwear. I promised her that of all the things in her apartment her underwear was probably the least likely to get stolen. Turned out she was putting them in a cabinet - mystery solved.

8) Poor judgment. Making a bad decision every once in a while happens and, when it does, we usually own up to it and fix it. Lesson learned. A change in judgment or doing something that is so far out of character that it’s alarming is a warning that something isn’t quite right. When mom was still living on her own, I remember her telling me that she had made a friend who was a stock car driver. That struck me as strange since a stock car race track would be one of the last places you’d ever find her. She then told me that he wanted to paint her name on his car and how flattered she was. I’m sorry, what?? I asked her if they were dating and she said no. I asked her if she had been giving him money and that’s when her talking about this guy stopped dead - I’m pretty sure the answer was “yes”. It wasn’t too long after this conversation that she fell and was diagnosed with dementia. I had the opportunity to meet stock car man and creepy doesn’t even begin to describe him - he quickly figured out that I wasn’t a fan and backed off. I’ll never know if she did give him money, and really, I don’t want to know.

9) Disengaging from social activities and hobbies. This can also be a sign of depression, so it bears investigation. Mom has always loved to socialize and go out; her social schedule would have exhausted me but she thrived on it. If an event got canceled due to weather or because someone was ill she would be crushed (not an exaggeration). Also, mom had played bridge for decades and was part of a group that met once a month to play; she loved the game and was quite good at it. Then, seemingly out of the blue, she stopped. I asked her a few times what had happened but I never got an answer and the same thing happened with going out with friends. I think part of the reason she stopped going out is that if she got up to use the restroom, she would forget how to get back to her seat or get turned around. She must have been so sad and scared but she never said a thing to me, she simply blamed the weather or some other circumstance for her not going out.

10) Changes in mood or personality. Again, this behavior could also indicate depression or an issue with medication so a call to a doctor is definitely in order. In mom’s case, she always had a specific way of doing things and certain preferences that sometimes seemed extreme but we knew they were normal for her. For instance, when she went to the airport alone she would call an Airport Express type of service to drive her to and from the airport and did it this way for years, perfectly normal. Then she changed to paying a friend to drive her and pick her up. Not entirely unusual, but odd. From what I put together, I think that telling someone she didn’t know which terminal she needed, coupled with being let out where it was convenient for the driver and not necessarily for her, and then not knowing where they were parked to pick her up got to be too much. If it was a friend, she could convince them to meet her at baggage claim and not worry about getting lost. Even if she forgot who dropped her off, she could be pretty sure they would call out her name when they saw her. The energy she expended trying to be “normal” had to have been staggering.

Even if I had all of this information or had thought to look it up when mom first started to change I don’t know if I would have taken the leap to have her looked at. Dementia isn’t obvious like a cough or a rash and things don’t change all at once. And when things do change and we question what may be going on, those first interactions can be met with denial and hostility which, being forever the “child”, can silence us for a time - until things become more pronounced or dangerous or catastrophic. Sadly, early intervention is no guarantee that dementia symptoms can be slowed down and, with the decline in funded research and the current lack of promise as far as drug therapies go, those of us who are watching the people we love change can do nothing more than care for them the best we can and learn from and lean on each other.   

https://www.alz.org/alzheimers-dementia/10_signs

https://www.alzheimers.net/2014-07-16/10-early-alzheimers-warning-signs/

What if it's something else?

If I started becoming confused about where I was, or where I parked the car, or how to get to a place I’ve been to a hundred times before, I know exactly where my mind would go - straight into panic mode. What if my family bought into the symptoms as an indicator of Alzheimer’s or my doctor didn’t investigate further due to that troublesome little gene I have? I’m really hoping they’d give me a chance and run further tests, or that I’d be cognizant enough to ask, but how many people have a disease or condition that looks like dementia but really isn’t and it goes undiagnosed?

There are several conditions that can mimic the beginnings of Alzheimer’s Disease or dementia. It doesn’t apply in my mom’s case, but I wonder how many seniors have undiagnosed conditions that have tragically altered their remaining years? For instance, I know how important nutrition is, especially for seniors, and poor nutrition or a condition that makes it difficult for the body to utilize certain nutrients can have a severe effect on mental cognition. Specifically, a deficiency in vitamin B12 can cause a certain type of anemia whose symptoms include mental slowness, irritability, and confusion. In addition, other vitamin deficiencies, most commonly vitamins B1 and B6, can mimic the symptoms of dementia. A deficiency in niacin or folic acid can also be the cause but it isn’t quite as common.

Those are just the first two of the ten most common conditions whose symptoms can look like the onset of dementia. As an aside, for the sake of simplicity, I’m going to use the term “dementia” since there are many forms of dementia and Alzheimer’s is just one of them. Here are the other eight  conditions:

3). Medication side effects. As we age, our liver and kidneys don’t function as well as they used to and certain drugs can build up to toxic levels which can cause symptoms that look like dementia. A review of all medications with one doctor would be a good place to start if a change in behavior is noticed, especially since as we age we get the fun of having specialized physicians for different conditions and sometimes wires get crossed or medications aren’t from the same pharmacy and interactions aren’t quite as easy to catch.

4). Depression. I can tell you first hand that depression can be insidious, it’s not usually the first thing you think is wrong when the symptoms begin showing up. All of us have experienced being forgetful, mental fogginess, lack of focus, and feeling out of sorts on occasion; however, when these feelings persist over time, perhaps for months, the first thought may be that something is really wrong, that perhaps you’re ill. Or, in the case of seniors, they may believe they're showing the first signs of dementia. If someone already has that fear in the back of their mind, you can understand how scared they would be to ask for help.

5). Thyroid. If there is too much or not enough thyroid output, the resulting symptoms can look like the onset of dementia.

6). A subdural hematoma. This is most likely caused by a fall that results in a buildup of pressure due to the collection of blood between the outer tissues of the brain and the brain itself and can be life threatening. Large ones may be able to be drained surgically while small ones may go away on their own. Any head injury, especially one in which there was a loss of consciousness, even for a second, deserves a closer look by a medical professional.

7). Normal Pressure Hydrocephalus (NPH). NPH is caused by the gradual buildup of brain fluid which causes pressure that can damage brain tissue. One of the first symptoms of NPH is a change in how a person walks; once they get started from a standing position, it looks almost as if their feet are stuck to the ground. Other symptoms include delirium and confusion.

8). Urinary Tract Infection (UTI). Seniors may not have the typical pain and fever symptoms of a UTI. They may, however, have sudden memory problems, confusion, dizziness, agitation, or hallucinations though it’s most likely these symptoms will occur in someone who already has dementia.

9). Brain tumor. Brain tumors are no joking matter but there have been days where I just know something must be going on to make me so disjointed. Alas, and thankfully, there is nothing to blame but me. In reality, meningiomas are a certain type of brain tumor that can cause cognitive changes, changes in personality, and changes in vision and hearing that may be mistaken for dementia. Being female seems to increase the risk of developing this type of tumor

10). Vascular dementia. When brain cells are damaged by a stroke or disease, cognitive impairment, trouble concentrating, and mood swings may be the result. It’s difficult to tell the difference between this and the beginning of Alzheimer’s; however, when these changes occur suddenly the cause could be a stroke or a series of small strokes that have gone unnoticed. Treatment of the cause of the stroke is the best way to keep the dementia symptoms from increasing and cognitive therapy such as brain exercises can help. Unlike Alzheimer’s, whose life expectancy is eight to 10 years or more, death is much more likely to occur within 5 years of the onset of vascular dementia symptoms, most likely due to a heart attack or stroke.

These are only some of the most common conditions that can mimic dementia symptoms - there are many more that are less common but still worth looking into. Any change in personality or ability to retain information, especially if your family members are concerned, should be addressed by a doctor as soon as it’s noticed. Not being able to remember the name of an acquaintance, occasionally forgetting events, or having to search for a word is normal. Not recognizing family members or very recent events is not.

I know of only one person who was suspected of maybe having dementia but due to his wife’s diligence and her nursing degree, she got him in to see specialists who later were able to diagnose his symptoms as being the result of a vitamin deficiency due to a medical condition. I remember when she told me he was having issues - my heart hurt for her and her husband. I also remember when she told me he was going to be ok - I still rejoice whenever I see pictures of them enjoying their grandchildren or having a night out. That small glimpse into what they could have lost and what they were feeling was so frightening and I’m so glad there was a happy ending to that chapter of their lives.

8 Treatable Conditions That Can Be Mistaken for Alzheimer's Disease

9 Treatable Conditions That Mimic Alzheimer's Disease

Mom and Dad before I came into the picture

Looking forward

Well hello there, 2019! I hope you know this but, just in case you don’t or 2018 didn’t warn you, people have some mighty high expectations of you. For a lot of us, you are a fresh start, a reset button, or perhaps an escape hatch. You represent a chance to do better, an opportunity to make different choices, or perhaps a time to take a good hard look at what we don’t like in our lives and jettison that crap into outer space where it belongs.

We all know it’s not the year that’s going to shoulder the responsibility for us doing what we need or want to do. It’s you, it’s me, and nobody else. Either do what you’ve put your mind to or don’t; the only price you’ll pay, whichever you choose, is the words that will swirl around in your head. Words like “Holy cow, I did it!”  or words that go something like, “I can’t believe I let that happen again.” Those last ones are the ones that will haunt you. Especially at 2 am.

There are some end of the year quotes picking up steam out there and I’ve seen them more times than I can count. I know you’ve seen them, too: “A strong woman…”, “letting go…”, “walking away…”, “I refuse to take any more shit…”, “I will no longer…” - you get the idea. No matter what my feelings are on all this, if one of those quotes has spoken to you and has given you the nudge or courage you’ve been looking for then have at it; whatever it takes to propel you into a brighter future and a happier you.

The thing that always makes me cringe a little when I see those particular “strong woman” quotes is that I do consider myself to be strong. As a person, not just as a woman. And I will tell you this - no matter how strong I am, if I love and respect you I will put up with some shit, I will not walk away because of hurt feelings, and I won’t let go until there is nothing left for me to hold on to.

The way I see it, none of that makes me weak. It makes me human. For me, in being human, there are no hard lines, no black and white, no “no matter whats”. I’ve found this out the hard way or, to put it in a way that’s a bit more kind, I’ve found this out through experience and maturity. Aside from keeping my children safe, there is no way I can say with 100% certainty that I know how I will react to a situation until I am knee deep in it. I’ve surprised myself a time or two and disappointed myself far more times than that.

The thing is, the people who have hurt me - well, I’ve hurt them, too. I’ve said things I don’t mean more often than I’d like to admit, I’ve slammed down ultimatums that amounted to nothing, and I’ve closed a door only to open it over and over again. There have been times when I’ve been so ashamed of my actions that I had a hard time looking in the mirror. I have failed my children in ways that I swore I never would; I let stress, exhaustion, self-doubt, and self-pity affect the way I spoke to them - not often, but I remember and oh, how I regret it. I learned from my mistakes but, as they say, you can’t unring a bell that’s already been rung.

I’m writing this as a way of reminding myself (and you, if you’d like) to look at the new year as a time to look forward, keep learning, apply what I’ve already learned, trust in my abilities a little more, and be grateful for every opportunity I am given to show the people in my life just how much they mean to me. It’s time to cut the new year, and me, some slack.

A change in perspective

This past week I had a small glimpse into what it must be like to need help for everything; from brushing my teeth to going to the bathroom to simply rolling over in bed. All this happened just three days after a wonderful Saturday spent celebrating my daughter’s wedding, dancing with my son and my husband, and being with my dearest friends and family.

On Tuesday, I had back surgery. I had a catheter, a port in my neck so they could take blood every day, a port in my wrist for direct injections, a drain in my back, and an IV. I had noisy things on my legs to prevent blood clots and I was hooked up to a machine that took my blood pressure and monitored my oxygen levels constantly and pinged incessantly. I went from someone who could walk five miles every day to someone who was applauded for making it down the hall of the hospital. When I saw my husband walk in the door of my room after my first night in the hospital, I cried. This morning, when he asked me what I was writing about and I said it out loud, I cried.

I’m back home now and getting around without a walker and improving every day. But not everyone is as lucky as I am, including my mom. For years, she and I used to walk the same way and, for a little while this week, we walked the same again. These past few days are just a brief moment in time in what I hope will be a very long, very productive life. I was able to walk away from relying on someone, sometimes someone I didn’t know, for the smallest things. So many of the people we love never will.

Christmas is such a busy time of the year and we all get pulled in so many directions. This year, I have no choice but to slow down, take a long look at the people I love and be thankful. So very thankful.

Well, that took a turn

I started writing this post a while ago not knowing that it would soon apply to me. I truly thought that after my two cervical spine surgeries all was well as far as my structural integrity goes. Poor assumption on my part. Lately, my lower back has been making its presence known; it has always been a bit clunky, but nothing so serious that ice or stretching couldn’t fix. Until this past month.

I’ve been having some sharp sciatic nerve pain that will not let up; it would take two miles of my normal five-mile walk for the pain to settle down to a low growl - still there but tolerable. So, I started seeing a chiropractor since that has always helped in the past. From the xrays, we could see what was wrong - she tried to give me some relief but I was making little to no progress. I happened to have a follow-up with my neurosurgeon last week so I showed him the xray and told him about my symptoms. He scheduled me for an MRI that night and Thursday I got the call - I have to have back surgery. All I wanted was a steroid shot so I could be on my merry way. I’m shocked, scared, and sad about the whole thing. Honest to God, is this real life??  

Now, on to my oh so timely, prophetic post.

As adults, we take on the role of caregivers to our children, our spouses, our parents, our pets, and occasionally our friends without a second thought. “I’ll always be here for you” and “If you need anything, let me know” are phrases that we speak without hesitation (most of the time) and, if asked, we gather ourselves up and take care of business. But what if we’re the ones who need help? And if that’s the case, who will take care of our parent if we’re unable?

I’ve thought of this a few times over the last five years that mom has been here. Besides the people who work at mom’s facility, I’m the one who takes care of her. I do her laundry, make sure she’s bathed, take her to appointments, handle her insurance and finances, and I pay her bills. It’s easy enough for me since I’ve been doing it for so long but what if I’m no longer able to do those things or I die before her? Of course, the place where she lives would take care of her physical needs; however, if I go down for the count, there’s a lot of details that wouldn’t be evident at first.

While searching for back-up plan ideas I found some helpful information by Rob Harris at The Caregiver Space website. Mr. Harris is a Senior Professional in Human Resources in addition to being a caregiver himself. This list is primarily for someone who still lives at home or with a relative; however, most of it can apply to those whose loved one is in assisted living or memory care. His suggestions are as follows:

• Identify people who are ready, willing, and able to step in should you be away for any length of time. Decide who is able to make critical decisions (legal, financial, regarding health insurance, consult with doctors) in your stead. Make a list of these potential substitute caregivers, keep copies for yourself and give each person copies as well as copies of the following:

• An emergency contact list of relatives, friends, and neighbors, and times they may be available should their assistance be needed.

• A list of pre-screened, competent home health care agencies that you are comfortable calling or whom your stand-in can call for help.

• A list of all your loved one’s medications, and how and when to administer them. Be sure the substitute is cleared to receive prescriptions from the pharmacy,

• A list of any diet restrictions and food/drug interactions.

• A list of their doctors, the doctor’s locations and contact numbers, plus a schedule of doctor’s visits. Make sure your substitute is cleared to speak with your loved one’s personal medical professionals.

• An overview of the patient’s medical history, a timeline of events or a diary of activities so that the substitute can be up to speed with their regimen.

In addition to the above, I would also add a description of mom’s likes and dislikes along with any “quirks” or preferences she has. Even if all of her medical needs are taken care of, having someone around who doesn’t “know” her as a person could be unsettling and cause her unnecessary fear and frustration.

Most of us hanging out in middle age don’t really give a lot of thought to our own mortality. We worry about our kids as they drive off to college, we worry about our parents falling or becoming ill, or at the worst - dying; we are the worriers, we’re the ones that dust ourselves off and keep going. Until we can’t. And that, my mortality, is what will always catch me by surprise.

In the beginning

Everything has a beginning: thoughts, beliefs, ideas, human beings, relationships - I could go on but I’m pretty sure we’re on the same page here. As far as living beings go, we may not know the exact moment our children and loved ones began but, hopefully for as long as we live, we will remember the moment we found out they existed and our world changed.

There is also the beginning of the end. By definition, it’s the point where something begins to get gradually worse until it ends or fails completely. It’s the thing that sometimes you see coming and can prepare for or it’s the thing that happens, on a random day in a random month, that changes the course of the rest of your life.

I’m far from being an expert but, from what I’ve been reading and from what I’ve seen, it seems that for most relatively healthy, older adults the beginning of the end (in this case, meaning the end of living independently and the end of control over one’s life and well-being) starts with a fall. A fall that results in perhaps a concussion, or a broken bone, or a new diagnosis; that’s what seems to be the catalyst that can take us from being active, autonomous members of society to relying on a healthcare system that is already struggling to keep up. Our healthcare system, and others around the world, are ill-prepared for the numbers of geriatric patients who will need care far beyond an antibiotic prescription or a yearly screening and checkup. Here’s a little something to consider from the Forbes website:

“Elder and long term care is rapidly becoming one of the most daunting healthcare challenges of our day. Between 2015 and 2030, the number of people in the world aged 60 years or over is expected to grow by 56%, from just over 900 million to nearly 1.5 billion. By 2050, the global population of people older than 60 is expected to jump to two billion. In the United States, the number of Americans over the age of 65 is expected to double from roughly 50 million today to nearly 100 million by 2060.”

Also…

“Neither low, nor middle, nor high income countries are immune to the implications of this change. As people age, they suffer from more and more illnesses. These chronic illnesses are placing an increasing burden on health systems. Governments need to recognize the effects of demographic change, not merely on public services, but on the social climate of each nation. Countries will have to reconsider all aspects of their communities, from healthcare systems and methods of delivering care to how whole cities are structured. An aging population can also create an unsustainable burden at the household level. The physical and emotional burden of providing care to an aging loved one is compounded by the fiscal burden as well.”

Well, now. That puts us in quite the pickle, doesn’t it?

As far as dementia and Alzheimer’s is concerned, I’ll never know when it began in Mom. But I do know when the diagnosis happened - in the hospital, after a fall - and her whole life changed.  Sure, we remember odd behaviors and times when something seemed “off” but was it just because of the natural progression of getting older or was it a symptom? I do know when it became undeniable that something was wrong, and there are no words to describe that feeling. If it were me, would I want to know the exact moment the genetic flaw in my DNA fired up and started me down a course that scares the hell out of me? Maybe. And even if I could throw myself into being proactive about my healthcare, find the right specialists, and sign up for every single drug trial I could find, would I want my life, and the lives of the people who love me, to be overshadowed  by a battle I’ll most likely lose? I don’t know the answer to that.

Time out for a fun fact I didn’t know but thanks to Google and Wikipedia I know now: A gerontologist is a healthcare professional (with at the least an associate’s degree) that specializes in the physical, mental, and social aspects of aging. A geriatrician is a physician that focuses on healthcare for the elderly with a focus on promoting health by preventing and treating diseases and disabilities. I didn’t know the two specialties were different, I honestly haven’t given it much thought. However, I do know how to use affect and effect correctly so there’s that. Go me.

So, what can we do to delay the beginning of the end for as long as we can? We can eat right, exercise, and keep our minds engaged but really, that goes for just living life. Finding a good geriatrician could be helpful since a doctor with a background in geriatrics could take into account our age, medical history, lifestyle, and the medications we’re taking. In turn, we could potentially lessen the chance of negative medication interactions and perhaps find a way to take less of the medications that cause the most severe side-effects. For instance, blood pressure medication can cause dehydration which can cause dizziness which can lead to a fall. A reminder to drink more water could be extremely helpful (doing it would help even more). Overheating, low blood sugar, and low iron levels can also lead to dizziness which could result in a fall.

However, finding a geriatrician may be a problem. In a given year, fewer than three hundred doctors will complete geriatrics training in the United States. Given that the number of people who are sixty-five years or older is on its way to doubling in the next forty years, to around 100 million, we’re looking at a whopper of a deficit.

Of course, regular physicians can treat geriatric patients but some things may end up getting overlooked. For example, when was the last time your general practitioner took a look at your feet? For now it probably isn’t an issue; however, it can be tough for an elderly person to trim their toenails or take care of their feet in general. Why do I mention feet? Because overlooking them can cause some serious problems. The following is from an article written by Dr. Paul Dearden and Dr. Andrew Wines:

Foot pain, progressive deformity, and loss of function...are seen as a natural consequence of getting older. However, age-related loss of natural soft tissue fat cushioning, loss of skin elasticity, bony deformity, and difficulty with basic foot care can lead to significant problems that may compromise an older person’s ability to maintain their independence. In many cases these foot issues contribute to...problems that can increase falls [sic] risk, with its well documented associated morbidity and mortality.

The article is from a peer reviewed journal so the content is rather dry. But the findings, or the message, is incredibly important. Something so small as foot pain or change in gait can be the beginning of the end of an independent life or life itself. If it were in your power to delay the beginning of the end, just by tweaking your daily routine or practicing more mindful self-care, would you do it? If you’re still on the fence, take a side trip to a skilled nursing or assisted living facility and get back to me. If that doesn’t change you, nothing will.

What it takes

I’ve noticed people, including myself, mentioning that they’ve observed a change in themselves since they became a caregiver. There are the obvious changes; way more tired, more stressed, more patient, and more appreciative of times that are good. We’ve most likely gained a bit more compassion and found we appreciate kindness in ourselves and others a little more. Then there are the not so obvious changes, the ones that maybe only we notice. For me, I’m less patient; not outwardly, but in my head if that makes sense. And there’s always that edge of constant worry - worry about money, and wondering if I’m doing enough, along with the fear that goes through me when mom’s number comes up on my phone or when the phone rings in the middle of the night.

I’ve been listening to a Cognitive Behavioral Therapy (CBT) course on Audible. The subject has always interested me and I may as well learn something while I’m getting my miles in. The instructor includes recordings of sessions he’s had with actual patients; one of his patients, Maria, really touched my heart:

Maria and her husband, Jack, have been happily married for forty-five years. They had retired, bought a sailboat so they could explore the coast of Maine together, and were looking forward to this new chapter of their lives. Then he was diagnosed with Alzheimer’s.

I have no idea what it would be like to have a spouse with this disease and I hope neither Bill nor I will ever have to find out. But when Maria speaks about the worry, guilt, anger, and depression I can hear it in her voice and understand it from my point of view. She’s actively mourning her husband while he’s still alive; he doesn’t know who she is most of the time and he can no longer take care of himself. She’s doing the best she can because she loves him but it’s changing who she is. That’s the part I understand the most - this disease not only changes the person who has been diagnosed, it also changes the person who takes care of them. Pain will do that.

We all know there’s two kinds of pain; physical pain and emotional pain. I’ve often wondered, hypothetically, how much pain of either kind a person can take before it kills them? Delivering a baby is pretty high on my list of physically painful experiences - in fact, it holds the top two positions. I’ve experienced childbirth without an epidural twice; not by choice but due to crappy planning and a baby who was in a hurry. The thing is, with babies, the pain itself won’t kill you (although it sure as hell felt like there was real potential there) plus, there’s most likely a happy pay-off at the end. Thankfully, when we reflect back on physically painful events, we may wince at the memory but we no longer feel it.

Emotional pain is different; it can change who you are - you know, you’ve been there. There are songs I can’t listen to, places I avoid, and things I won’t do because of the pain I’ve associated with them. I’ve had my heart broken, I’ve lost a best friend, I’ve hurt someone I love, I’ve watched my dogs take their last breath, and I’ve experienced the deep pain of losing my dad. When I reflect back on some of those times I can still feel the pain - not as much and not as deeply as I did at first, but it’s still there. As awful as these experiences can be there is good that can come out of them; it’s through these experiences that we gain compassion and the ability to empathize with others going through something similar. How else are we able to witness a toddler having a tantrum and look at the parent with a “I’ve been there too and it sucks” smile?

Being a caregiver for a parent or spouse with dementia or any chronic illness is draining, emotionally and physically. And the emotional pain that comes with it is, for me, a slow burn. Of course, when mom was first diagnosed and I was trying to figure stuff out, the emotional pain and frustration had some moments that were anything but a slow burn - they were white hot with their intensity. But now, things have settled into a kind of normalcy; the worry is always there but it’s not as loud as it used to be.

So, where do you find the energy to keep going and still feel joy, happiness, contentment, and some semblance of control over your life? I’ve said it before but I think it’s worth repeating - to make the time to take care of ourselves is the best thing we can do for the people we love. A sleep deprived, stressed out, malnourished, depressed caregiver is not what any of us strive to be but it’s a role that seems to be incredibly easy to fall into. Plus, on top of it all, we’re harder on ourselves than anyone else would ever be.

Someone very dear to me had a mantra he would repeat to himself while taking care of his dad:

Today I will be the best I can be with my dad. And when I don’t feel like it, I will act like it. Tomorrow I will look back on today and I will say, well done.

Being the best you can be today does not mean perfection; it’s the best you can do with the physical and emotional resources you have right now. There are times when I feel frustrated with mom but nothing good will come out of me expressing that frustration to her, I’d be venting which only adds fuel to the situation. I’ve found if I re-frame what is happening, or let it go and move on, I eventually feel more in control and I don’t leave mom feeling like a scolded child. Many times it’s not your actions that can make or break a day, a visit, or an outing - it’s your reactions. It’s nice to sit down at the end of the day, pour yourself an adult beverage, and know you handled things in a way you can feel good about. Guilt and remorse isn’t a good look on anyone.

My friend, Jonathan Kirkendall MA LPC, has a series of videos  he calls “30 Second Therapy”. One of the videos is about preparing for a big life change and in it he explains how important it is to have internal and external support in place. External support meaning you surround yourself with people who have experienced something similar, like your friends, or a support group. Internal support, as Jonathan explains, is a time to practice a mindset of curiosity, or self-compassion. When you hit a wall, rather than quitting and  feeling as though you’ve failed, think about how to get around it or how to work with this particular challenge. Take some time to visit his page, it’s so very worth a look around. Oh, and be sure to check out his story. Our history and what we do with our experiences is what makes us who we are, and he has done an amazing job.

I found an article at the Family Caregiver Alliance  site that addresses the special kind of stress that caregivers are under. Did you know that caregivers are more likely to have a chronic illness - namely high blood pressure and cholesterol -  and an estimated forty-six to fifty-nine percent of us are clinically depressed? No surprise there but, to get out of that cycle, you’ve got to get your own shovel and dig yourself out. Not an easy task when you’re exhausted but the only one who can fix it is you in whatever capacity that may be.

I mentioned Maria earlier in this post.  At the beginning of her CBT sessions I could hear the sadness and exhaustion in her voice - it brought tears to my eyes several times. With some coaching, Maria learned she is enough, she is worth some time to herself, and getting out and being with a friend has some pretty magical powers. Her situation, my situation, is not going to get better before it ends and the emotional pain will be there; however, it doesn’t have to take a front row seat all the time. The people we love deserve the best us we can deliver - there is nothing wrong with showing ourselves some of the kindness, consideration, and tolerance we show others. It’s not easy, I have to consciously make the effort, but I know it’s worth it.

“Take the great example of the 4 minute mile. One guy breaks it, then all of a sudden everyone breaks it. And they break it in such a short period of time that it can’t be because they were training harder. It’s purely that it was a psychological barrier, and someone had to show them that they could do it.”  - Malcolm Gladwell

There's always room for improvement

I usually feel like I’m doing a “good job” taking care of my mom - there isn’t as much second-guessing and panic as there was in the beginning (thank goodness), and as new issues show up I’m getting better at not overthinking and overreacting. I’m mostly ok with the realization that there is no fix, and no reason; it simply is.

All that being said, sometimes it surprises me how near the surface my emotions can be. I took mom to the dentist recently; she gets a cleaning every three months since her ability to care for her teeth has dropped off and she won’t let me do very much to help her. We’ve been doing our best to avoid any major interventions since the way mom experiences discomfort can be extreme and none of us wants to go down that path unless it’s absolutely necessary. During this visit, the hygienist noticed that a tooth seemed to be a little tender and mom was uncomfortable with it being touched.

I was asked about her brushing habits and about how much I was able to help which is an absolutely normal and valid question. The hygienist is a friend I’ve known for twenty years; she’s always kind and caring but for some reason, I felt tears start to well up. I’m doing the best I can for mom but any inkling that I might be failing her in some way makes me feel guilt I know shouldn’t be there. It’s hard to feel like you’re doing all you can but still falling short - even when it comes to brushing teeth. Even when it's 100% self-imposed.

Thankfully I have friends I can talk things out with, fairly decent reasoning skills, and a solid sense of humor. I’ve also been able to find some excellent resources that help me frame situations in a way I may not have thought of, change my attitude for the better (not all the time but, hey, I’m trying), and help me think about things that aren’t always comfortable to verbalize but oh-so-important.

Many of my resources are books - some I’ve found on my own and others were suggested or given to me. One of them, Stone Benches by Judith Ingalsbe, was recommended by a friend and I’ll be forever grateful - it’s that good and it’s made a huge difference in how I communicate with my mom. At first, I thought it was a little “sweet” for me, and the font just about drove me nuts but I kept reading and I’m so glad I did.

I will never be as wonderful a caretaker as Ms. Ingalsbe but her insights, stories, and information have made me a better daughter - I’m far less irritated by the little stuff, I know there is no point in reprimanding my mom if she’s being difficult; and, when she has a concern, for her it’s very real and that’s exactly how I treat it. Through this book, I have learned to say things that will calm her, point out something to distract her, or just reach over and hold her hand. It’s also made me realize that my feelings of isolation and frustration, of how mom’s dementia has changed me, and yes - the guilt, are normal. I’m not going to fall apart any time soon.

Your loved one is not capable of changing. This leaves only one variable in the equation capable of changing, and that would be you. The simplest gestures mean so much to an individual who has lost so much control over their lives. When possible, create situations where they have some control. It is important to build our loved one’s self esteem. For all our loved ones are no longer able to do, there is still so much they can do. Each one is a unique, wonderful human being with impressive gifts and abilities all their own. - Judith Ingalsbe

Knocking on Heaven's Door: The Path to a Better Way of Death by Katy Butler is another book that was recommended. Although some of the subject matter in Knocking on Heaven’s Door is difficult and, due to our culture,  can almost be described as taboo - it is real, incredibly moving, thought-provoking, and beautiful.

In short, the book takes a hard look at how the medical industry is failing at end of life care - not failing us by not doing enough; failing us by doing too much. In 2010, Ms. Butler wrote an article for the New York Times, What Broke My Father's Heart, which was a precursor to the book. The response she received surprised her, as she wasn’t quite sure how readers would react, and it made her realize that there are so many others who are going through their own version of struggle and self-doubt.  

Ms. Butler’s story is far less sweet than Ms. Ingalsbe’s. She had a very different relationship with her parents and she is brutally honest about them and herself. Her choices weren’t always perfect and some of the thoughts she shared were hard to read while others were from a place of deep love. But that is part of being human; we make mistakes, we hold on to past resentments, and we learn that relationships can change and grow into something different and often better. As for me, I’d love to have a couple shots at a “do-over” button - it would make 3 A.M a whole lot quieter in my head.

Knocking on Heaven’s Door made me take a hard look at what I would do if mom had a stroke or a heart attack; often, it seems as though the medical field has a habit of looking at a singular condition rather than the entire person. As in Ms. Butler’s dad’s case - he also had dementia - when is medical intervention too much? If I were told mom needed heart bypass surgery or a stent or a pacemaker I’d really have to give it some thought. Before reading this book I most likely would go along with what a doctor recommended - most of us are conditioned to do just that. However, we don’t have to - we don’t have to agree to a procedure, or being moved to ICU, or another type of intervention.

If there ever comes a time when I have to make a serious decision about mom's care, I hope I can be brave enough to do what’s right for mom and her needs; however, you never really know what you’ll do until you’re knee deep in it just trying to find the right way out.

“As you move through this life and this world you change things slightly, you leave marks behind, however small. And in return, life — and travel — leaves marks on you. Most of the time, those marks — on your body or on your heart — are beautiful. Often, though, they hurt. - Anthony Bourdain

Changing locations

When mom fell and was diagnosed with dementia four years ago we knew the time had come to move her from Illinois to Oklahoma. We didn’t have a whole lot of lead time - we had known we would have to make decisions somewhere down the line but mom’s injury and diagnosis put us in the express lane. Not only was working between two states a nightmare; in addition, I had no idea what I was doing. I got lucky and found a wonderful place for her - she and I are very happy with our decision but there are so many things I wish I would have known.

For those of you who have found themselves in a caregiving situation or are just getting started and exploring what options are available, I thought I’d share what I and others I’ve spoken with have learned along the way.

First, I thought I’d gather up a few websites:                                                

A good place to start is your local Area Agency on Aging. From their homepage you can choose your state and gain access to:

• Available services in your area

• Mobility assistance programs, meal plans & housing

• Assistance in gaining access to services

• Individual counseling, support groups, and caregiver training

• Respite care

• Supplemental services, on a limited basis

AARP's Caregiving Basics is also a great place to start and you don’t have to be a member to access the information. They point out a number of important tips such as: don’t sign on the day of your visit, bring home brochures and pricing so that you can go over the information with other family members, and consider reviewing the contract with your financial advisor and attorney. There’s also a link to local resources and solutions - all you have to do is enter your zip code. Also included in the site is a Legal Checklist for Caregivers which can help you make sure you’ve got the important things covered.

Another helpful site, Samada, was recently brought to my attention. It’s easy to navigate as well as being an additional source to explore your options. There’s a page for care and housing options as well as an extremely helpful guide that explains the different ways to pay for long-term care including Medicare, Medicaid, Health Savings Accounts, and long-term care insurance to name a few. In the "money" section there’s an article that explains how to spend down assets to qualify for Medicaid along with helpful links throughout.

Now, here’s a little first (and second) hand experience:

Once you’ve gotten a preliminary handle on things, then this is where the collective wisdom of others comes in handy. Why reinvent the wheel when you don’t have to? Those of us in this situation know what it feels like and we have loved and appreciated any guidance given to us. For that very reason, we happily pass along what we’ve learned.

If you’ve already decided on assisted living, memory care, or an independent living facility what are some of the things you should look for? One of the most important sources of information for me was the residents themselves - do they look happy, are they clean, are they engaged? Does the staff treat them warmly and with kindness? Is there an aide or a staff member within your line of sight? Also, how are you received by the director or the person who is to show you around and explain pricing, care, etc.? You may be their 1000th potential client but, for you, this is your first time, it’s stressful, you have questions - lots of them -  and you should be treated with compassion and respect. As my friend commented about one of her visits to a retirement community, “if you aren’t listening to me I can assume you won’t be listening to her.” Exactly.

Make note of the general cleanliness of the facility, not just the model apartment or room they show you. Visit the restrooms, peek into a resident’s room if you can, and ask to see the kitchen. Not that you need to be reminded, but notice the smell. Accidents happen and that’s understandable but there should not be a pervasive smell of urine throughout the facility.

Once you’ve chosen and moved your mom/dad/spouse in, visit often and at different times of the day. Get to know the staff - they are your direct line to how your loved one is getting along - whether it’s what they’re eating; their sleeping habits; or, as in my case, how much they wander around in the middle of the night. It should go without saying but it’s worth a reminder: treat the staff with kindness and appreciation and learn their names - they have a tough job and the ones who stick it out and stay year after year are a special kind of awesome.

Introduce yourself to your parent’s friends within the facility - mom has several that look out for her and I love them for that. They make sure she’s in the dining room for meals, save her a place at bingo, and let her know when they see me walking down the hall. I really appreciate that last one - mom is given the heads up on who I am and I can skip telling her who I am. Another great benefit to getting to know their friends is you’ll gain a few more “grandparent” figures. I say “grandparent” because they’re always thrilled to see you, generous with hugs and compliments, and they’re concerned if your hands are cold. I’ve been offered blankets, sweaters, and gloves so many times - it’s so dear that they want to take care of me. No one can ever have too much of that.

A friend from Departure From Logic's Facebook group was gracious enough to share a few more tips: visit with the family members of the residents, eat a meal there, and join a local caregiver support group. Other than the obvious, a support group will provide you with a wealth of information - all the brochures and guided tours in the world won’t give you the insight that the people who are the recipients of the facility’s services will.

In addition, she had a few more ideas to keep in mind which I’ve summarised here:

Once you’ve narrowed down your search for a facility, if possible, have your parent participate in the decision. Also, you’ll want to keep the future in mind when choosing. If assisted living isn’t too far down the road, perhaps that’s where you should start - moving is difficult and stressful and can exacerbate certain health problems. *Melissa here - as a side note, the place that I chose for my mom has independent living, assisted living, memory care, and skilled nursing and, except for independent living, she’s used them all. Being able to maintain an ongoing relationship with the staff made it so much easier for her and me.

Be sure you know the procedure the facility uses to get your parent cared for if a medical issue arises. Do they call 911 first, or you? Are they going to put her in an ambulance and send her alone to the ER? This is important to know because many of our parents or loved ones are not able to navigate the ER by themselves and they need someone who knows them well to provide information, interpret their needs, and reassure them.

A question worth asking is under what circumstances might your parent be asked to leave? Dementia and Alzheimer’s affects everyone’s behavior a little differently and certain medical conditions can make taking care of your parent more difficult - what level of care requires more attention than the facility is equipped to provide?

Ensure you have everything in writing and take notes during meetings and discussions. It’s easy to forget small details, especially if the information is foreign to you; also, don’t be afraid to ask questions, be direct, and follow up.

Being an advocate for someone you love is a tough job and an important one. It’s hard to even know what questions to ask when something is so new and often emotionally charged - hopefully, this will give you a place to start and a little peace in knowing you aren’t alone.

“By three methods we may learn wisdom: First, by reflection, which is noblest; Second, by imitation, which is easiest; and third by experience, which is the bitterest.” - Confucius