to lie or not to lie, that is the question

A very interesting and thought-provoking article appeared in The New Yorker recently, in the October 8, 2018 issue. It can also be read online at this link. The author, Larissa MacFarquhar, digs deep into the ethics of lying to dementia patients. It’s a very good read and does a nice job of presenting arguments  both for and against each side of the issue.

This matter of whether to play along with Mom’s delusions, or to correct her and try to get her to see the truth of a situation, is something we’ve been grappling with front and center for quite some time now. Early on, even before she was diagnosed, I came upon Penny Garner and Oliver James’ book, Contented Dementia. At the time I read it, it felt like a godsend. Here was my mother, getting increasingly upset and agitated at being told she was incorrect on something. The more we tried to reason with her and explain why, for instance, we were taking a right turn to go to the store when she was insisting the store was to the left, or telling her that a familiar landmark like a large building or park had been there for years when she seemed certain it had just recently been built because she didn’t remember it being there before, only resulted in her getting more agitated and upset and bitterly accusing you of lying to her. This is how it started. Another dilemma early on (and still even now) happens while she’s cleaning the house. She will find things that she doesn’t remember having, and then angrily accuse Dad of having purchased something without telling her. If Dad tries to tell her it’s something they’ve had for years, she concludes he’s lying to her and it makes her even more upset and angry. The more he, and we, try to explain “the truth” to her, the more it angers and upsets her, and the more it convinces her that we’re all lying to her, conspiring against her.

Then I found the Contented Dementia book. It seemed like a beautiful and perfectly harmless solution. Why keep trying to correct her when all it does is to anger her and remind her of her distressing diagnosis? Does it really matter if we agree that that street wasn’t there before and so must have been put in just recently? It all seemed, to me, to come down to a question of quality of life. Would you rather spend the last years of your life always arguing with loved ones, distressed and angry and certain they’re lying to you? Or would you rather have pleasant, enjoyable interactions where you feel heard and validated? Back when I was raising my two boys I was convinced (still am) that one of the keys to raising happy, well-adjusted kids was to enjoy as much positive, happy, joyful interation with them as possible, and to minimize the arguments and angry moments. That’s not to say there isn’t a time and place for negative, less-enjoyable interactions. Sometimes you have to put your foot down about something and they’re just not going to like it. Even with mom, there are sometimes when I find myself wondering if I should be putting my foot down more firmly and insisting on something she doesn’t like to hear. Of course, the last time I did this (almost one year ago now) it resulted in a truly traumatic incident. So.

About midway through The New Yorker article, the author mentions a study on ethics and dementia done in the UK by Graham Stokes, a British researcher of dementia. The study asked people who are currently diagnosed with dementia whether it was ethical to lie to dementia patients. The majority of responders felt that lying to dementia patients was not ethical. I found myself thinking of mom. If I were to ask her the same question, whether she would rather be corrected every time she’s not remembering something correctly, or whether she would prefer I just go along with whatever she’s saying so as not to upset her, she would almost certainly request that she not be lied to. But it’s not so simple, and thankfully the author of the article digs into some of the deeper philosophical questions at play.

Sometimes I read these articles and opinions from people like Mr. Stokes, or even the author of this article, and I can’t help but conclude that they’ve never actually had to deal with taking care of a loved one who has dementia. It’s one thing to be a degreed scientist trying to solve problems through research and study, or a thorough and eloquent journalist reporting on a story, but as they say, “until you’ve walked in someone else’s shoes.” This is probably a good time to explain a current issue we’re dealing with, as it does a good job of illustrating the enormous gray areas that people caring for loved ones with dementia face all the time. For the past 6 months mom has been complaining of a significant pain on the left side of her skull (it may have been there longer but mom is extremely private and often won’t tell anyone about matters like these). The pain radiates from the front of her forehead all the way to a few inches above and behind her left ear. It’s so painful, in fact, that she can’t put any pressure on the left side of her head. She’s stopped sleeping on her left side, and she even wears her glasses in such a way that the earpiece is high up on her head, several inches above her left ear where the pain is (I have no idea how she’s able to keep her glasses on this way, but somehow she manages to do it).

When she first told me about this pain several months ago now, I told her she should see a doctor about it (she has no assigned primary care doctor, which is another matter we’ve been having a hell of a time with). In typical “mom fashion” she downplayed the pain along with my concern, insisting it was only the glasses she’d been wearing that was causing it, that she simply needed to see her eye doctor about it. I didn’t push it (because my mom WILL NOT be pushed on anything) but would keep asking her about it each time we talked. It’s been at least 6 months now and the pain is still there, maybe even a little worse (hard to tell with her as her story sometimes changes, I think because she doesn’t want me to be concerned so she will sometimes insist it’s not that bad, or that it’s different). Each time we talk about it I try to get a little more emphatic with my pleas to her to see a doctor about it. But whenever I show additional concern or emphasis on having it looked into, she just ramps up her denial and refusal to believe it’s anything serious.

People who don’t know my mom will invariably say things like, “Well, you should insist! You should tell her she HAS to see a doctor right away! You should put her in your car and take her to the ER to have it checked out!” But these simply aren’t possible, not without causing a very traumatic incident involving screaming, crying and physically fighting you off if you try to put her in your car to take her to the doctor. I’m not just saying this. It happened a year ago, and it was the kind of experience you never want to happen ever again. There’s also the ethical matter of her autonomy. Yes, she’s been diagnosed with Alzheimer’s, and yes that now allows those of us with medical power of attorney to make medical decisions for her, but she’s still in the earlier stages of the disease. I think most would agree that the matter of removing someone’s autonomy is best held off until absolutely necessary.

The ethical questions surrounding this matter about my mom’s very concerning head pain are serious and complex, and none of us can really answer them with full confidence. At least not at this time, as we’re fully up to our necks in this terrible mud. What if she has some sort of brain aneurism or tumor that could be dealt with if found in a timely manner? What if she has a serious stroke or even dies as a result of whatever it is that’s causing the pain in her skull? What responsibility do I or my dad have in that case? How ethical is it to drag her kicking and screaming to see a doctor against her will and destroying the last remnants of any trust she may now hold for those of us who care for her? It must even be asked, what if she’s intentional in her decision not to see a doctor because, in her mind, she feels that death by some sudden, unknown cause is preferable to the long, slow, agonizing death by Alzheimer’s, which she witnessed her own mother go through?

Fortunately for all of us, about two weeks ago she developed swelling and drooping of her left eye (the same side of the skull she’s been having all the pain), which finally caused her to make an appointment with her eye doctor.  And the reason why she hadn’t yet made an appointment with him these past 6 months, despite her insistence with me that her pain was an eyeglass problem and not something a primary care doctor needed to see? Honestly, I can’t know for sure. It could very well be that she just kept forgetting to make one. Or it could be that she simply kept procrastinating on it. But now that she’s having these new issues with her left eye it prompted her finally to see him. I happened to be visiting her at the time, and once again I tried very hard to convince her that she should see a primary care doctor, or even head to the ER. I told her how her new eye issues could very well be related to the pain in her skull, and possibly even her advancing dementia. But once again she brushed me off and wouldn’t listen. Thank god she listens to medical professionals, because her eye doctor told her exactly the same thing and she has now FINALLY agreed to see a doctor.

The “lying” part of this story is the part I haven’t said much about here (perhaps a future post, we’ll see), having to do with all the behind-the-scenes maneuvering my dad and I have been doing, trying to get mom assigned to a primary care physician. Because of her anger and resistance to having dad or I intervene in any way with her health issues, we’ve been doing all of this work behind her back, without her knowing. But her suspicions (about a lot of things and not just this) are always lurking just below the surface, ready to roar into life at the slightest provocation. There have been many instances where she’s caught wind of these little lies, like when she went to have one of her prescriptions refilled and noticed the name of the prescribing doctor was a new one she didn’t recognize. It caused her to fly into a rage, adamant that she WOULD NOT see any doctor that Dad or I might have had a hand in arranging. But we are honestly desperate for her to see an actual doctor, and desperate for her to go willingly. We’ve tried so many things, so many other ways, to no avail. Yes, Dad and I did have a hand in finally getting her assigned to a doctor and even getting an appointment set up for her, but even when Dad lied and said he hadn’t set it up, her suspicions were enough for her to physically drive down to the clinic to raise hell and refuse the appointment. Luckily, we were able to avert disaster (me on the phone with the clinic manager and dad in the parking lot, afraid to enter the clinic for fear that mom would see him there), and even more luckily, that she went to see that eye doctor about this same time. It was only because he told her she needed to see a regular doctor that she agreed to see the one we’d arranged for her. Still, there was lying involved, and it’s not lost on me that, while most of mom’s suspicions about being lied to are just plain untrue and delusional, there are instances where she’s correct in her suspicions. And yet, I know if we were to come clean and admit to setting up the doctor assignment it would only solidify her belief that we’re all colluding against her and that nothing we say can be trusted. It’s such a enormous gray area. What I tell myself currently, and what I keep telling my Dad, is that everything we’re doing is for her safety and well-being, which is absolutely true.

 

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slowing down

Being that I live a couple hours away from my parents I don’t get to see them as often as I’d like. I do call frequently but phone conversations are mostly for catching up. Just the usual check-in on the latest happenings, maybe some updates on the grandkids, small talk about the weather. For several years now Mom has been in the habit of keeping her phone conversations quite short, handing the phone to Dad to do most of the talking after just a few minutes. I’ve learned this is one of the signs of increasing dementia — pulling away from social contacts, friends and family alike. It makes sense when you think of it, when you know something of what’s happening in the brain of an Alzheimer’s patient. She struggles with conversation and remembering words, and now even remembering the topic at hand or the last sentence. It makes conversation often very frustrating and embarrassing for her. It’s much less stressful for her to keep phone conversations brief. When she first started doing this I struggled not to take it personally. Even my boys noticed it and would ask me why Grandma didn’t seem to want to talk to them anymore. I’m so thankful for the many resources available to educate me on what this disease does to a brain. We spend our lives living with ‘normal’ brains to the point where we take so many things for granted. It can be extremely difficult to understand the words and behaviors of someone living with Alzheimer’s because we operate with many unconscious and unquestioned beliefs on how brains operate. When someone’s behavior toward you changes, it’s natural to try to process it based on the largely unexamined beliefs and habits of interactions we all develop as we grow and live in the world. But brains which are changing due to Alzheimer’s, or some other form of brain disease, don’t operate like normal brains. This is a very important thing to understand when it comes to dementia. I encourage everyone who has a loved one dealing with this disease to do some reading and study into how the brain (and therefore interactions and words) change and why. It provides a gateway from frustration to compassion, from misunderstanding to understanding.

Yesterday my husband and I invited my parents to join us on a day trip to a small vacation town a few hours from where we live (they’re currently staying briefly at their second home which is not far from us), giving me the chance to spend the whole day with them. A few days before this I had been doing more research into Alzheimer’s and how it affects behavior after my Dad had called me with another story. Being her primary caregiver, there’s a lot on his shoulders. She’s so easily frustrated and agitated now, and in her confusion and frustration she lashes out at Dad. Although he knows this is common with the disease it’s still extremely difficult to deal with. Here’s an example — recently Mom opened some mail they’d received from State Farm Insurance. “What is this?” she began with Dad. “Why are you spending all this money?? You’re always spending money!! It’s out of control!!” She was very angry with him and could not be consoled (which is another hallmark of this disease — there is little-to-no chance of reasoning with a person who has Alzheimer’s as they no longer have the capacity to reason that they once had). Dad responded, “This is our car insurance. We’ve had State Farm Insurance for years! If you look in your glove compartment you’ll see the State Farm insurance card in there.” But this only angered her more. Her emotions get stuck in her brain now like a stubborn skip in a record. She just can’t get past them no matter how reasonable or clear any facts or evidence to the contrary are. If you do some reading into how best to deal with dementia patients, you’ll see the standard recommendation is to not argue with them, no matter how crazy their rants, because they no longer have the capacity to reason or change their views. Trying to reason with them only makes them more agitated since their brains can’t process that way anymore. It’s far better to just do your best to go along with them. If their ranting is very angry and full of personal attacks (not uncommon!), the advice is to simply apologize (calmly) and then try to re-direct the person’s attention to something less distressing to them. It’s very sound advice and I can tell it you works. Still, it doesn’t lessen the stress on those who deal with this on a daily basis (thinking of Dad here).

As I was digging for resources to send my Dad the other day to help him learn to deal with her increasing episodes of difficult behavior, I came across this YouTube video — https://www.youtube.com/watch?v=iyk9a9hM_EI. It has all the usual recommendations, but there was one part of the video I was particularly glad to have seen before our day trip yesterday. I watched it play out plain as the nose on my face as I conversed with Mom throughout the day and while watched others trying to communicate with her. The part of the video I’m referring to starts just after the 5:00 mark. It describes how the brain of an Alzheimer’s patient is no longer able to process words and meanings as fast as it used to. There was a point yesterday when Mom practically articulated this very thing when Dad was trying to explain something to her. It was a long explanation, involving a lot of words and steps and she was having great difficulty trying to understand. As her frustration climbed she finally blurted out “Slow down! Go back to the beginning! I can’t keep up with what you’re saying!”. Dad wasn’t talking fast at all, and was trying to explain as clearly as he could, but Mom’s brain needed time to process each step of the explanation. I could see this in operation with her all day, in fact.

She’s so much slower than she used to be, not just with comprehending conversation but also with her body movements. It’s not that she’s any more physically feeble, but her confusion so easily overtakes her now, slowing down her pace and causing her stop often trying to figure out where she’s at, what she’s doing. She doesn’t recognize familiar landmarks or situations like she used to. I can see that certain situations make it worse, while others make it better. When she’s home and in a familiar place she’s able to function much better. But when there’s a lot of change happening (change of scenery, change of conversation topic, moving through crowds or in unfamiliar places) it triggers “lost mode” in her brain. She becomes confused, anxious and easily frightened or agitated. Our day trip yesterday thrust her into a lot of unfamiliarity. The sidewalks were crowded with tourists, the streets were unfamiliar. Even though she’s been to this town many times before, and even though she knows she’s visited there before, it’s not a place she’s spent a lot of time at so it’s slipping into the ever-increasing list of places and situations that used to be familiar but no longer ring a lot of bells for her.

Thankfully, much of the day yesterday was spent just sitting in the car making the long drive to and from the tourist town. My Dad and husband were in the front seats and I sat in the back seat with Mom. This allowed us to have some semi-private conversation. At one point Mom confided in me about her fright and worry over her condition. She reiterated her now-frequent plea to move into a retirement or assisted care facility, reminding me once again that she wants to move into facility on her own and doesn’t want Dad to move in with her. She’s been asking openly for this since last July. A full year now.

Her wish to move into a facility on her own has been something we’ve been thinking about and struggling with since she first brought it up. For a long time I felt resistence to it, mostly because it’s clear to me that she needs Dad’s help, and he needs hers as well. They support each other, and when Mom is not in the throes of a dementia-fueled episode of delusions and verbal attacks, she will easily and very sweetly speak of how kind Dad is, how sweet he is to her. And although I know Dad can sometimes struggle with handling her difficult behavior in the recommended ways (who wouldn’t? It’s perfectly understandable), he’s very, very good about being as helpful and as non-triggering to her as he possibly can. It’s clear they love each other, but when her dementia symptoms are triggered it’s a truly miserable situation for both of them.

Some months ago my opinion about whether mom should live on her own in a facility started to change. I can see that Dad’s stress and anxiety over what’s happening with Mom is really starting to affect his own health. He worries about her constantly. He walks on eggshells every moment of the day in his efforts not to trigger her. He’s reluctant to leave her alone because increasingly something will frighten her or cause a panic and she’ll call him, her voice full of distress, begging him to please come home quickly. Although I do my best to educate him about Alzheimer’s and how to deal with difficult behavior and hurtful words, he struggles mightily not to take it all personally, always feeling guilt and responsibility for her outbursts even though he knows “it’s the dementia talking, not Mom”. The fact that she wants to live alone, without him, is particularly hurtful to him, I know. Understandably, he has a hard time seeing her wish as anything other than a deeply personal rejection.

But after spending time with Mom yesterday, watching her struggle to understand words, seeing her so lost and confused so much of the time, I’m seeing now that her wish to live alone is not born of rejection, but of love. I know she can’t articulate this anymore, so I will speak for her. She loves Dad very much, and she knows he loves, her, too. But the Alzheimer’s is causing changes in her brain, her beliefs and reactions that she’s unable to stop. I know she’s aware, to some extent, of her behavior and words toward Dad. I know because Dad has told me that sometimes in her tears and raging she’ll lash out at him with words that say as much. But her dementia-altered brain is unable to change course. There’s no stopping it. She had a difficult time controlling her reactions anymore. This is both scary and demeaning to her.

When she confided to me about her fears yesterday she was very firm and clear that she’s not just ready to be in an assisted living place, but that she feels very much she needs to be. She told me how she’d gone to the gas station the other day to fill up her car, but when she got out and looked at the gas pump she had no idea what to do or how to fill her car up. She said she stood there a long time trying to remember but couldn’t. She had to call Dad to come and help her, and told me that they now have an agreement that he will keep her car gassed up so she doesn’t have to put gas in it anymore. This is just another of the increasing stories of how she’s forgetten how to do a task which she once did without much thought at all. This frightens her, and understandably so. Dad has also told me that cooking meals is extremely frustrating for her now as she forgets where things are in the kitchen, or will forget various ingredients at the store, or how to do certain things she always used to do. I know she also feels very bad about how much Dad is having to step in to do things that she can no longer do. This is another reason why I believe she wants to live alone – to relieve Dad of the ever-growing task of taking care of her. This is also totally in keeping with how she’s always been, even before the dementia set in. She hates to be a burden to others. Really hates it.

an official diagnosis, finally

It sounds crazy to call a diagnosis of Alzheimer’s a relief, but in our case it is. It’s been nearly two years that Dad has been trying to get Mom’s clinic to pay attention to her memory changes and figure out what was causing it. Not knowing leaves the door open for a lot of miscommunication and misdirection, effectively shutting the door to seeking out proper treatment, or reversing it if it turns out to be treatable. There was also the matter of mom forgetting what goes on at her medical appointments, like her appointment from January when she’d been referred to a neurologist. Bringing it up to her, in light of her completely forgetting it, would trigger her suspicions that she was being lied to and conspired against. It became a terribly awkward, guilt-inducing dance of accessing her medical records without her knowledge (so that we could learn what actually happened during appointments, although both Dad and I have already gone through the proper legal channels to be named on her HIPAA forms and be legally named as her power of attorney for healthcare matters) and contacting medical professionals behind her back, pleading them to look into her memory issues and begging them not to tell her about our efforts on her behalf, not wanting to trigger her emotional outbursts, suspicions and rage. It’s ironic, isn’t it? She has been absolutely right all along on the matter of our working together behind her back, but her imaginings that we’re “conspiring against her” couldn’t be further from the truth. It has all been out of love and terribly worrisome concern over the alarming changes we’ve been watching unfold the past few years. I know we’re not alone in this. I hear again and again that other families going through the same changes are brought to the same actions.

Let me share with you how we were finally able to get her in to see a neurologist. It’s a story that I’m sure other families in this situation will nod their head to, recognizing the great challenges this disease poses not just to the patient, but to family as well. I also hope to enlighten those who don’t realize or understand the complicated and convoluted “dance” which dementia requires of the patient and those who care for them. It’s not an easy thing to explain the complexities of memory loss to those who know little about it, or who have limited and infrequent contact with someone who’s in the early stages of the disease. To begin, I’ll back up about a year and a half when my Dad’s increasing calls of concern to me about Mom’s memory changes brought us to desire a diagnosis of some sort. At that time we had no idea what was causing it. For years we’d chalked it up to normal aging, but it was becoming apparent that this was beyond normal. Dad had a friend who’d been showing similar symptoms, who was referred to a doctor for a diagnosis and then started taking B-12 shots, after which his memory improved tremendously. Maybe this was happening in Mom’s case, as well? Or maybe it was another treatable condition? We wouldn’t know, and we couldn’t get her treated, until she saw a doctor about it and was diagnosed. This is how it began.

But at that time, Mom was still in denial about her memory issues. Any attempt to bring up the matter, or to suggest she see a doctor about it, was met with deflection. She would point to Dad and say his memory was just as bad. We would tell her that it might very well be treatable and reversible as was the case for their friend, but she refused. Next, Dad tried suggesting that the two of them go in to see a doctor together, both being tested at the same time, but she refused this as well. As the year progressed it became more habitual for her to joke and apologize for her “bad memory”. My sister and I thought we might use one of these opportunities to suggest a doctor look into it, but that too failed. In the meantime, Dad began trying to intervene with the doctors and nurses at her clinic (where he’s also a patient), requesting that they evaluate her for memory issues, but they were uncooperative. I also tried calling the clinic at one point last summer, speaking to one of the nurses there. I was told it was “not their job” to ask Mom about her memory, that Mom had to bring it up first. Again we suggested to Mom that she bring it up with her doctor, but she refused.

Feeling incredibly frustrated with the lack of responsible care by her doctors and clinic, I started researching options in the large metropolitan city I live in (my parents live a few hours away in a much smaller town). I sat down on three separate occasions with my Mom, discussing these with her and also suggesting that she and I go in to be tested together, as I also sometimes wonder about my own memory! I had hoped Mom might be okay with it if I also went in for the same appointment and tests, but again – No.

As I noted in a previous entry, we finally got her home clinic to bring her in for testing in January. Although she doesn’t remember the appointment, according to her medical records they conducted the VAMC SLUMS test with her (one of many common cognitive tests doctors use to evaluate a patient’s cognitive and memory concerns). A score of 27-30 indicates normal cognitive functioning, 21-26 shows mild neurocognitive impairment, and a score of 1-20 indicates dementia. Mom scored 19. According to the visit notes, they discussed following up with an appointment to see a neurologist, which (according to the notes) Mom agreed to. The notes say a referral was made, but by the time she got home she’d forgotten about it, and no one from the clinic ever called to follow up. It was the classic “one step forward, two steps back” scenario, leaving us frustrated once again in our efforts to figure out what’s going on for her.

In the meantime, we continued reaching out to others for help — friends in the medical profession, support groups for dementia, the helpline for the Alzheimer’s Association, friends who have also dealt with similar matters with their own loved ones. One of the suggestions that came up repeatedly was to go ahead and make an appointment without her knowing, and then either tell her just hours or a day before (partly because of the forgetting, and partly to mitigate the potential for negative reaction), or to just get her in the car and take her there without telling her until we actually enter the building. This sounds alarming, I know, but it is something that has worked for many, and which is one of the few options left when the patient adamantly refuses. But in our case, we knew that pulling such a move would almost certainly not work. The chance that she would walk right out as soon as she realized what was happening was 100%, not to mention the resulting anger and likelihood she would never speak to any of us again (at least until she forgot it). But we were feeling desperate and Dad asked me to make an appointment, which I did. He was hoping he could catch Mom on a good day and convince her to go willingly. He tried. She refused. He tried several times. She refused each time.

At this point I started trying to move Dad into a new mindset. We could not, and would not, drag Mom kicking and screaming to an appointment. What, then, is the alternative? It seems we have no choice but to just wait until something happens. Yes, it might be something horrible like a car accident or her getting lost and not being able to find her way home, but maybe we needed to start accepting this as the only option open to us? This is another example of the very “messy” and heartbreakingly difficult challenges that families in this situation have to face more often than you might think.

The appointment at the big clinic was nearing, just a week away, and Dad still had not been successful in getting her to agree. So, thinking he just needed more time, he called to reschedule it for a few months from now. Unfortunately, the clinic sent Mom a letter in the mail confirming the change of appointment, which she found and opened. She flew into a rage, understandably. Dad apologized, explaining he’d made the appointment out of concern and love for her and only wanted what’s best for her. It didn’t help.

That was two weeks ago. The day after that happened I had planned to come visit them for a few days. I asked Dad if I should still come and he said yes. Maybe she would have forgotten, and in any case, he didn’t want me to cancel my visitation plans out of fear it would trigger her suspicions again (she often accuses Dad of turning my sister and I, and even their grandkids, against her — keep in mind, this is the dementia talking, not my sweet Mother). I came as planned and Mom seemed fine. There was no sense of anger or tension at all. We went to lunch the next day and as we chatted over lunch she told me how she’d been terribly angry at Dad just a few days ago, but when I asked her what had happened she couldn’t remember. She searched and searched her mind but nothing was there. All she knew was that she had been very angry with him. This is how things usually go with her these days. She remembers the emotions but can’t remember the details.

Feeling once again that we’d stepped backward instead of forward, Dad decided to try a new route. He physically went down to the neurology clinic where she’d been referred in January and asked if they could search their records for a referral. Maybe if they could find it we could have them call to make the appointment? Although Mom refuses any attempts on our part to get her some medical intervention, she will go along with whatever a medical professional says. If the clinic could call and tell her that her primary care physician had made the referral she would almost certainly agree to go. To our surprise, the receptionist at the clinic told Dad that Mom already had an appointment scheduled, and it was for the following week! In fact, it was scheduled during the week I’d already planned to be there. What luck!

Finally! We had an appointment for her, and one that she would likely go to since her clinic had made it. We asked the neurology clinic to call her with a reminder, telling her that her primary care physician had requested it (which he had). It took a few calls from the clinic to convince Mom that her doctor had made it and not Dad, but she finally concluded they were telling the truth and she decided to go.

The next hurdle was the matter of having either Dad or I accompany her to the appointment. There was a very real chance she would forget what was said during her appointment (she has a proven track record on this now), or that her primary clinic had not forwarded her medical files and the neurologist would simply ask her why she was there and she would say, “I don’t know. I don’t have a problem.” Dad and I even tried going down to the clinic the day before the appointment, asking if they could call Mom to request that she bring another family member, but by that time they’d already called her so many times. They assured us the neurologist she’d be seeing would be certain to evaluate her for memory issues.

On the morning of her appointment I made breakfast for her while she got ready. She was in a good mood and we chatted pleasantly. Almost as a sort of side comment I asked her if she’d like me to accompany her to her appointment. To my great relief, she said yes. As we drove to the clinic she thanked me for coming along, telling me she would have surely gotten lost and never found it if I hadn’t been there with her (so true). Dad was there, as well, and the three of us waited for her to be called in. As she waited, she was asked to fill out some paperwork. It was the usual stuff you fill out when you’re a new patient at a clinic. Questions about your health history, your family’s health history, your insurance information, medications you currently take, etc. She really struggled to remember and answer correctly, remarking that she was glad Dad and I were there to help her recall.

Finally we get in to see the doctor. He conducted another cognitive test with Mom, similar to the VAMC SLUMS she’d done in January (I’m not sure which one he used, but they all have the same kind of questions — “What year is it? Who is the president? Do these simple math problems. Draw a clock showing this time. Repeat these four words and remember them in a few minutes.” etc). Mom actually did very well with the math problems although it did take her considerable effort to answer them, just like in the lobby when she was trying to answer the questions on the new patient forms. It was almost as if it was physically straining to her to figure out the answers, and it definitely took much longer than it used to take for her to answers questions like that. She did fine on the clock and cube drawings, too, but every question that required even the shortest of short term memory was a total fail. She knew it would be and kept trying to not answer at all, telling the doctor that she could in no way remember things like that, but he did his best to give her every possible chance of remembering, even having her practice and repeat things as often as she needed in an effort to remember them. But no. She couldn’t retain any new information, even just seconds apart.

After the testing and some very awkward questions asked of Dad and I (right there in front of Mom, which I felt was inappropriate and unfortunate) to “give examples” of the different instances of memory loss and cognitive or emotional changes we’ve seen in the past few years, he told us matter-of-factly that Mom was in the early stages of Alzheimer’s. I worried that Mom would take this badly, but she sat there calmly and seemed to have no reaction at all. It was clear to us that she had already prepared herself for this possibility. The doctor also noted it might be due to low B-12 or thyroid, that he would test her for this, and if these were found to be low it was easily treatable and that the memory declines would be reversed. So there’s that. Of course, we’re hopeful that’s all it is. We’ll find out soon enough.

I also asked him if there was a way to check for and confirm the presence of plaque in the brain. Honestly, it seemed a bit unscientific to proclaim such a big diagnosis simply on the basis of a series of verbal and written questions, and yet this is the standard by which the disease is currently diagnosed. He seemed to indicate there really wasn’t a definitive brain scan kind of test aside from an autopsy (we all laughed at that). For now we’ll let this diagnosis sink in and will wait for the results from the thyroid and B-12 tests, but I may still want to try to bring her in to the big clinic here in my city. There is so much research being done, so many clinical trials she would likely qualify for, as well as promising protocols involving diet and other lifestyle interventions. I’d love to get her in to a clinic that is forward-thinking. Still, knowing my Mom, she will likely not want to bother with anything other than the ‘tried and true’, no matter how unsuccessful the ‘tried and true’ has proven to be in the case of Alzheimer’s. We’ll see…

two sides to every coin

Forgetfulness is one of the big curses of dementia, but it’s sometimes also one of its blessings. Mom called me on the phone last week and happily chatted with me as if nothing had happened. Has she completely forgotten the traumatic melt-down from December that caused her to refuse any contact with me for over a month? It’s hard to say for sure, though there’s no doubt that much of what happened (if not all of it) is no longer accessible in her memory. I’ve talked with her several times now over the past week and have even visited her on two occasions. Our relationship is back to what it once was, with no mention or reference to the Christmas incident. There’s no reason to bring it up. In fact, I believe the most compassionate response is to never mention it again. It was extremely traumatic for all of us, and for mom most of all, I’m sure. Best to let it fade and to move on.

It’s clear, though, that mom is currently in the grip of realizing the seriousness of her cognitive decline. Until recently she’s been in vigorous denial about it, but there are daily reminders now. When I visited with her last, just a few days ago, she began crying as we said our goodbyes. I know it’s because she’s now fully acknowledging the extent of her condition. What a frightening thing to realize one’s own loss of memories and mental capacities! My heart aches for her.

These past several months now it seems as if the decline of her mental capacities has been accelerating. We’ve been after her doctors to have her assessed, with limited success. She had that appointment at the start of January, after I sent that letter to her medical clinic detailing the progression of her dementia. During the appointment they had her take one of those cognitive assessment tests for dementia and she scored quite low, indicating that she indeed has dementia. They also referred her to a neurologist but left it to her to make the appointment. But it seems she forgot about the referral almost as soon as she left the appointment and my dad and I have been trying ever since to get the clinic to call her back and arrange the appointment for her. It’s been a shit-show, to say the least. My dad finally had to physically march into the clinic last week and demand to talk to someone, complaining about the lack of responsiveness and the inadequate treatment she’s getting. This finally prompted some action, though it’s been woefully uncoordinated. We’re still trying to figure out if an appointment has been made with a neurologist yet, and where (there are only two or three neurologists in the town they live in).

But, on a positive note, she was finally brought in to meet with (for the first time ever) her assigned doctor a few days ago. The doctor went over her various prescriptions only to discover she had stopped taking several of her medications, including all of her anti-anxiety and anti-depression meds. She stopped taking them a couple months ago when she’d been referred to a gynecologist for a persistent yeast infection she’s been dealing with. It seems the gynecologist told her she no longer needed to be taking her medications! Or at least that’s what my mom understood her to be saying. Frustratingly, she hadn’t told dad or I about this, so we had no idea. She’s notoriously close-mouthed about her health matters, even with me and dad. This is another thing that makes all of this more complicated.

But knowing now that she’s been off these medications for the past few months helps to explain some of what we’d been seeing, especially the alarming increase in her anxiety and panic episodes. It was very scary for her, too, even causing her to recently start waking in the middle of night in full-blown panics. She expressed to me recently how frightening this has been for her, and how glad she is now to be getting back on her medications. Still, it’s a process. She never should have stopped those meds cold-turkey like she had, and now she has to slowly work back up toward the doses she used to take and which help her the most. It’s causing her a lot of nausea and feelings of illness to be adding these pills back into her routine. As a result, she’s hardly eating at all. We’re doing our best to get some good nutrition in her, but we can’t force-feed her, and so we’re crossing our fingers and watching her closely, hoping for the best. It’s a day-by-day thing.

the insidious cruelty of dementia

Dementia is such a very cruel thing. I ache for my poor mother. She is frightened so easily and confused much of the time. Frightened and confused. Her emotional resources have never been strong or well-developed and the disease is wreaking havoc as a result, not only on her but on my father and I, as well. We are the ones who have been closest to her in recent years, and as many will tell you it’s the closest caregivers who bear the heaviest burden and the biggest, cruelest blows of the emotional lashing out, the harsh, abusive language and the most bitter tears. It’s a cruel, cruel disease, affecting not just the person with dementia but close family, as well, dragging all of us into the struggle in one way or another.

I’m learning that dementia can present differently in different people. While there are definite hallmarks of the condition, it expresses in ways as unique as the individuals themselves. In the case of my mother it seems the dementia has not changed her so much as greatly amplified the mental quirks and challenges she’s had all her life. For example, for as long as I’ve known her she’s struggled with anxiety issues, including a history of panic attacks. Fear has always been the cornerstone of her responses to anything unfamiliar. But as the dementia takes over she finds more of everything to be unfamiliar causing her even more fear, far more than she’s ever shown in the past. Her anxiety and panic episodes are now much more frequent and severe and only seem to be increasing. It’s heartbreaking to see.

It seems as though her window of reality is narrowing, as well. She doesn’t remember what happened just a short while ago, which makes each moment more challenging and confusing as she tries to figure out where she is, what’s going on, or even what she went to the store to get. This evening she called my dad, quite upset about a trip to the grocery store. Apparently it started when she got lost trying to drive to the store. This is a store she’s been to many times. Then, she went inside to buy a frozen dinner but couldn’t figure out where to the frozen meals were. Finally, as she was making her way back to her car she couldn’t remember if she’d actually purchased the items, or if she had simply walked out of the store with it without paying. The whole incident left her very upset, confused and tearful. Episodes like these are happening more and more frequently. More fright and confusion. Sometimes these episodes bring her to tears and she seems to want to reach out to dad for help, like tonight, but other times it will trigger her and she’ll lash out in a rage. That, too, is a fear response, and I believe has much to do with her (again, lifelong) personality trait of hating to feel vulnerable and not wanting others to feel sorry for her or to give her help in anyway. Like I mentioned, the dementia seems to be greatly exacerbating her lifelong usual reactions, more so the negative ones than the positive.

Unfortunately for me, the combination of her dementia and its exacerbation of her personality quirks and neuroses has quite possibly spelled the end of our relationship. In the past few years as I’ve been researching dementia, people in the know have warned me that those closest to someone with dementia will very likely experience their loved one screaming the most horrible, hateful words at them. Still, no matter how many times you hear this it just doesn’t prepare you for the actuality of it happening. But this ended up happening to me just about a month ago, and to this day she is still refusing to have anything to do with me. We were hopeful at first that she would quickly forget the incident, but given her natural inclination toward fearfulness and feeling victimized, the emotional impact of the drama has imprinted deeply and here we are now, 4 weeks out and she still refuses to answer the phone when I call or open the letter of love and apology I sent when my calls went unanswered.

In my last post I mentioned the book and website titled ‘Contented Dementia’. I still believe it’s a beautiful and compassionate approach to take. I came across this article just today which follows along similar lines, “As Memory Fades Emotion Lives On.” I have been seeing exactly this with my mother, and was why I had been following the guidelines in the Contented Dementia material. Unfortunately in my mother’s case, she’s always had a natural disposition toward negative feelings in response to anything challenging or unfamiliar. It’s not that she’s always been a fearful, angry person. Most who have known her in her life would say she’s a very sweet person, and it’s true. It’s just that her default mode, when it comes to challenging or unfamiliar situations, has always been one of fearfulness and resentment. It seems now that the dementia has only amplified this. Despite the fact that she and I have had a very good relationship, especially in recent years as I put the Contented Dementia principles into practice, that brief episode last month which caused her to react so horribly has all but erased the many years of positive interactions and good memories.

I believe this is why she still refuses to talk to me, now a month since the incident between us. The emotion of what happened has imprinted in her mind. It’s all she remembers of it. Interestingly, even when the incident was happening I could see this unfolding as plain as day. Once her default mode of fear, anger and resentment took hold (pretty much immediately) there was nothing to stop it. No amount of “I love you’s”, no amount of gentle pleadings for remembrances of love and connectedness could break the dementia-fueled breakdown.

What’s done now is done. There’s no going back. As many will tell you, there is no reasoning with someone who has dementia. Dementia is a condition that affects, alters and amplifies that person’s lifelong identity and personality–it’s the raw material through which the dementia manifests. And it affects not just the person who has it, but the whole family and those who are closest.

It’s such a cruel, cruel thing.

no time but now

I’ve been thinking of starting a site like this for several years, but how do you begin at the end? Let me be more clear about that. It’s not the end-end. Not yet. My mother is still very much alive and likely to live for many more years, but her mental state is changing. As the dementia becomes increasingly apparent it’s causing changes in her that are alarming and disturbing. We’re actually still very much at the beginning of trying to deal with it and manage it, but at the same time, whatever this disease is that has eroded her cognitive abilities (no official diagnosis yet) it has eaten away at the person we all remember her to be and has brought some painful endings to the mother figure I used to know. This blog will be my account of this journey we’re on — myself and my father, my sister and all of our loved ones — as we cope with and make our way through the challenge of seeing my mother (I’ll call her K) go through this.

Let me give you a little background which figures prominently in our story. My mom’s mother died as a result of what was likely Alzheimer’s. She was never officially diagnosed and no autopsy was performed after her death so we don’t know for sure, but in her final year or two she no longer recognized family members and was confused much of the time. At the very end she was unable to feed herself or even chew and swallow her food. Watching her mother pass away like this was utterly terrifying for my mom and it became her greatest fear that she would go the same way.

And now it’s happening to her. Her worst nightmare appears to be coming true. It started maybe 5 years ago, maybe 6 or 7. Like so many of us, she started having trouble finding the right words during conversation, or forgetting small things. At the time we all chalked it up to old age. It didn’t seem all that abnormal. But over time the problem got worse. More words were forgotten more frequently, the small forgotten things started to grow into forgetting place names, forgetting directions and familiar landmarks. But the more these ‘forgetfulnesses’ started piling up, the more fiercely K denied them, quickly pointing out that her husband (I’ll call him A) forgets just as much as her. For several years this was her ‘out’ — deflecting from her forgetfulness by pointing the finger at A. We all played along with this and didn’t argue or challenge her. We just laughed and joked about it, but in private we all agreed that K’s memory was getting worse and worse, and it was looking like more than the usual old age stuff.

Some years before any of the word-dropping and forgetfulness began, my mom gave me a book — “Still Alice” by Lisa Genova. As she handed it to me she told me she wanted me to read it so I would know how to handle her if she were to ever get Alzheimer’s. I read the book and have read many more since, but while all were insightful in their own way none prepared me for what we find ourselves dealing with now. I think it’s partly due to the fact that dementia affects different people in different ways. It’s also partly due to the difference between reading someone else’s story where you’re nothing more than an observer, versus finding yourself facing the very real loss of someone you love, and all the accompanying personal challenges and issues it invariably brings up, not just for the person dealing with dementia but for close friends and loved ones, as well. I remember being similarly blindsided (though in a good way) when my first child was born. During the pregnancy people would tell me how I would love my child more than anything I could imagine. So I tried to imagine it. I tried to feel just how much love I could have for this soon-to-be-born child, and–do you know?–I actually thought I had a pretty good idea of what to expect! But no, I had no clue. Not even close! No amount of testimonials or reading parenting books or vivid imagination could give me even an inkling of the actual experience of the love I felt for my newborn child.

And what’s happening now with my mother? Not good things, I’m afraid. It’s been tough. Very tough. About a year ago I found a wonderful resource in the website and book, Contented Dementia. It struck me as a profoundly compassionate way to deal with dementia and it filled me with great hope that we could all accompany K through this journey in a way that would leave her happy and smiling. In fact, both my father and I had already adopted many of the suggestions in the book, just by our natural efforts in trying to keep her calm and not trigger her. We learned not to argue with her. If she reported something we knew to be incorrect we’d just go along with it and not challenge her story (because increasingly, in someone with dementia–at least with K’s dementia–arguing or trying to reason with them is nothing but an exercise in futility and only serves to get them very agitated and upset). If K did happen to get upset about something, we learned to simply apologize even if K was in the wrong. The apology was nothing more than placating to whatever delusion K was operating under, but it was far easier to simply apologize and play along than try to reason or argue. We all got very good at this, but my dad (being her primary caretaker) has to practice this with her daily. It’s not an easy task to live with someone who increasingly distrusts you, increasingly attacks and accuses you, saying some very terrible things at you and about you. It’s really beats you down emotionally to sit there time after time, listening to these attacks with head bowed, quietly repeating apologies. It’s come to the point now where apologies have no effect. When she’s on one of her ‘rampages’ (as we’ve come to call them) there is nothing that will stop them, and they can get quite bad. I’m afraid my mother is in a period right now of very difficult behavior.

You’re probably wondering about now, just what are her doctors are doing about this? Is she on any medication? Mood stabilizers? Here is something I can tell you for certain about dementia. It’s very, very messy. The more I talk with others and hear their stories, the more I realize it’s only the extremely lucky ones who go through this without much struggle. There’s also the complicating matter of good medical care, which seems ever harder to find these days. I can tell you we’ve been very frustrated with her doctors, but her own fear and denial is just as much to blame. Last year, without any testing (as far as we can tell) or even a well-documented visitation note from her doctor, she was prescribed the drug Aricept. But one of the peculiar hallmarks of K’s dementia is her increasing obsession with reading the fine print and warning labels on everything from pills to benign household items and then getting terribly scared. When she got her Aricept prescription filled she brought it home and then read through the fine print on the label insert. She didn’t like what she read and refused to take the pills. Her doctor noted on subsequent visits that she was not taking the pills but didn’t challenge her on it or follow up at all.

Recently–just a few weeks ago, in fact–I wrote a letter to her doctor detailing the changes we’ve seen in her memory and mood over the past 5 years. I had my Dad and sister look over it too, before sending, to be sure we were all on the same page about what’s happening. The letter finally prompted her medical clinic to call her in for appointment so they could conduct a proper cognitive assessment test with her. I had asked for this specifically in the letter, and also that she be referred to a neurologist for further testing if she scored what I expected she would. Sure enough, she scored solidly in the dementia range and was given a referral. But either she’s forgotten about it, or she’s choosing not to follow through. This is all further complicated by the fact that we’ve had to intervene in this way, with this letter, without her knowing. Because another hallmark of K’s current struggle with dementia is her strong belief, and subsequent anger, that A is conspiring with others and turning everyone against her. If she were to learn we had been in contact with her doctor about this it would mean a holy living hell of the mother of all rampages from her, and NONE of us wants to endure that! (See? I told you it was messy) So, as of now we’re trying to figure out what the best next move is. We’re not supposed to know about the cognitive test or the neurologist referral, and she didn’t tell anyone about it so we can’t very well say, “So, have you called to make an appointment with the neurologist yet?” Probably what I’ll end up doing is writing another letter to the doctor informing him of what’s happening, and asking the clinic to please call her to set up the appointment rather than waiting for her to do it. In the meantime, she is taking no drugs that might help, and any anti-anxiety drugs she used to take she is either no longer taking (probably because she got frightened from reading the inserts), or they’re not working for her like they used to.