Dementia

Keep going

I recently read a book, Ambiguous Loss: Learning to Live with Unresolved Grief , at the recommendation of a friend. It’s one of those books where, as I read, I’m seeing myself in the pages; I’m seeing my constant struggle to make sense of what is happening with mom - and, in turn, me - and I find myself feeling a sense of relief that there is a name for what is happening. 

Alzheimer’s and other dementias take so much away and leave vast uncertainty behind. It’s a terrible diagnosis for the person with the disease and for those who love them. And then there’s  the grief that comes in waves, along with sadness, anger, and yes, even self-pity. It’s hard to take sometimes. I had no idea what I was in for and even if someone had described it to me, I wouldn’t have understood. 

Twenty-four years ago my dad died in his sleep; one minute everything was normal and the next it wasn’t. That kind of grief, the kind that rockets into your soul and your heart and blows everything apart, dropped me to my knees. I remember looking around the room with the phone in my hand and it seemed as if everything had shifted. My world had changed and there was no going back, no easing in, no gathering myself up to face the inevitable, just a cannonball jump into a world my dad no longer existed in. 

The grief I’m experiencing with mom is different. I felt profound sadness and disbelief when this all started happening, and a lot of anger.  There was a sense of urgency to get her moved here and her medical needs taken care of, and tons of frustration with all the little things in between. Now that the logistics of her care is largely taken care of, the urgency is gone but the uncertainty never goes away.

In the book, Ambiguous Loss: Learning to Live with Unresolved Grief, the author, Pauline Boss, talks with a man named John whose wife, Sarah, was in the advanced stages of Alzheimer’s disease. When John was asked if his wife’s recent need for a feeding tube was the lowest point for him so far, his answer was not the expected ‘yes’; instead, he picked up a pencil and drew a staircase that was headed downward on a piece of paper. John explained that at each step, which represented each new crisis that came up, he had felt panicked and had no idea how he was going to handle it. But he did handle it, over and over again. At every new step there was a moment of not knowing what to do, or how to adjust, or what was needed but, every time, he figured it out. He kept going.

And that’s what we as human beings do - we handle life as it’s served up. Sometimes a regular Thursday afternoon turns into something unexpectedly wonderful and sometimes a Tuesday morning turns our lives upside down in a tragic way we never saw coming. We adjust, we re-calibrate, we learn, and we do the very best we can at every new turn and then...we keep going.

Mom and her dog, Susie. November 1958

Mom and her dog, Susie. November 1958

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.


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

Mom and Dad before I came into the picture

A small bit of clarity

Last week my friend, Kathy, shared a video with me that explains dementia so well that I wanted to share it. It’s a simple analogy but it is the best explanation I’ve been given for what’s going on with mom. Here’s the link if you’d like to watch it: Alzheimer's Society - Bookcase Analogy . In summary, it explains that while short-term memories may be lost, there are many that remain; however, those memories that remain may mean that her “now” is 1950 something. Interestingly, while the memories of what she did today may be lost, the feelings linger. She may not remember that we’ve just gotten her nails done, but she does know that she is relaxed and happy and it’s been a good day.

The humanness of her is still there; she feels all the emotions I feel with a bit more confusion and perhaps fear thrown in. I can see the confusion when she first looks at me or when she asks me where she lives. Who I am and where she lives comes to her eventually but that’s not going to last. I haven’t seen her afraid yet but I have seen her concerned. Perhaps being alone scares her and that’s why she leaves her room constantly in the middle of the night?  I can see where that would drive her to want to sit in the halls and be around people. That may help me assign some understanding to her wandering but I still wish she would stay in her room; $800 extra because she roams the halls still seems awfully steep to me.

It’s tough to remember to boil everything down to how she feels, but I need to keep it in practice so it becomes easier for me to do. I know she likes it when I hug her or place my hand on her arm, she enjoys having me fix her hair and telling her how nice she looks. She loves putting on clothes that are still warm from my dryer -  it amazes me how long they stay warm once they’ve been folded and placed in her bag. She likes how the afternoon sun comes in her window and lights up the whole room. It’s simple stuff that can get drowned out by all the noise of questions like why does she make piles out of purses and clothes, why does she all of a sudden hoard styrofoam cups, why does she always have those little cups of butter in her purse? I could ask her why every time I see her and she wouldn’t be able to tell me and, really, does the “why” matter? Not in the least.

Even though I have a better understanding of how my mom feels, it doesn’t mean that all of a sudden I’m going to be all zen every time I see her. I know I’ll get frustrated, but I also know how to handle that frustration. Instead of asking her why she has ten glasses from the dining room in her room I just gather them up and say, “mom - really???”. She smiles at me and shrugs her shoulders and I take them back.

While writing this post I thought about a book I read last year. I had heard about it on a podcast and the excerpt that was read seemed so relevant to what I’m going through with mom. Turns out that there are about two parts of the book that could apply, the rest of it is an exploration of marriage and the difficulties that come about as we change and grow as a person while trying to accommodate and appreciate the change and growth of our spouse. I’ve read enough of those for two lifetimes. Overall it’s a good book and a quick read, just not my usual choice.

Back to why I thought of this book. There is one passage I highlighted because it seemed to resonate with how I feel about change and expectation, what is happening with my mom, how I’m trying to fit my own life into my days, how I’m trying to consider what really matters, and the questions I ask myself every day.

What are the forces that shape our most elemental bonds? How do we make lifelong commitments in the face of identities that are continuously shifting and commit ourselves for all time when the self is so often in flux? What happens to love in the face of the unexpected, in the face of disappointment and compromise -- how do we wrest beauty from imperfection, find grace in the ordinary, desire what we have rather than what we lack? - Dani Shapiro Hourglass

I’ll let you know when I figure all that out.