Emotional Preparedness

A person on Quora asked this, "How can I emotionally prepare myself for the day that my mother's memory issues develop into Alzheimer's?"

There were some good answers about preparing financially and legally by doing research, getting her will and and power of attorney in order, etc. But, to the question about preparing emotionally? Impossible to answer because it cannot be done!

You cannot. I am so sorry. But you cannot. 

The day will sneak up on you and your emotional response will be unpredictable. You could be about to face unimaginable heartache. Maybe not. Maybe she will be one of those ladies that suffers in quiet dignity. Doubtful, but it could happen. 

So here is my non-professional advice from somebody who is now where you may one day be. 

• Don't spend all your health and mental energy in her foxhole. You can't save her. So don't consume yourself with articles and opinions on Alzheimer's and experts giving you false hope. Your whole life does not have to be about Alzheimer's. Some of it, sure. But you will lose all perspective and even communication skills if you never leave the foxhole. 
• Expect otherwise perfectly normal friends, relatives, and siblings to experience rage over care decisions and seemingly insignificant things like whether she gets apple juice or cranberry or whether you play hymns in her room or jazz. They need somewhere to project their anger and helplessness. It might be in your direction. Get out of the way. Don't waste emotional energy on that. You do not have enough to spare. 
• If you find that you are the one lashing out at people, stop. Talk to a counselor. You could potentially lose very close friends, damage relationships, or get fired from your job all because you're going through the stages of grief related to coping with your loved one's Alzheimer's.
• Do what you can to make her life as comfortable as possible. This will allow you to feel less helpless. There will be fewer and fewer things you can do as the disease progresses. So, read to her, sing to her, hang photos of family members where she can see them, chat about old family memories even if she has that thousand yard stare. Play music and keep her living area as chaos free as possible. 
• Do not dwell on things that are imperfect: if her nursing home is not the most elegant, if they keeping losing her clothes, or if she lives in your home and you cannot provide her with best television set, so what? This upsets YOU, not her. Correct the things that you CAN and let go of the things you CANNOT. 
• Eat. Sleep. Get fresh air. Exercise. Take care of you. You are useless to her if you fall apart. 
• Read number 4 over and over. 
• You need a hobby/distraction: book club, auto club, photography, painting, furniture restoration, bird watching, ANYTHING to take your mind some place fresh and engaging that has nothing to do with medication, diapers, purée food, and all the other things that will one day be your new normal.

A final (and my most important) word of advice comes from a line in the "Jurassic Park" movie where the character John Arnold is about to reboot the park's computer system to solve the failed fencing problem. As he flips the switch, Arnold quite simply says, "hold on to your butts". That is  his warning that things are about to change in an unpredictable way.

Don't we wish curing Alzheimer's was as elementary as flipping a switch and rebooting the person's system? Alas, it is not.

So, hold on to your butts.

Music and Madness

One of the most effective tools in helping calm the mad behavior that often results from an Alzheimer patient's inability to cope with his or her pain, confusion, or environment is music. When a person suffering from dementia or Alzheimer's explodes in raging anger, combative behavior, verbal abuse and nastiness, music is often the key to unlocking the calmer, more rational, compassionate part of the brain that has been either sleeping or wounded by the disease. When short term memory dies, music can bring to the surface a long term memory, feeling, or emotion still living.

The Alzheimer’s Foundation of America says: “When used appropriately, music can shift mood, manage stress-induced agitation, stimulate positive interactions, facilitate cognitive function, and coordinate motor movements.” I can attest to this first hand. For example, when my mother was exceptionally agitated and combative, my sister and I would sing, “You are my Sunshine” to calm her so the aids could shower her without getting struck or bitten. Playing music on a portable bluetooth speaker, singing, or listening to live music made her more social, communicative, and lifted her out of bouts of depression.

There are a myriad of articles online that explain why music is beneficial to people with Alzheimer’s so I won’t try to play scientist here but I’ve seen much evidence that music helps the person living with the disease by evoking memories and emotions attached to familiar music. It also provides a mechanism for expression the Alzheimer’s patient is losing verbally. Music speaks when words fail even for those of us who are not suffering from dementia.

HBO did a series called the “Alzheimer’s Project: The Memory Loss Tapes” where they profiled seven people in differing stages of Alzheimer’s. One very profound tape showed a man named Woody Geist who had sung many years of his life with a group called The Grunyons. He was an absent-minded whistler, always making some kind of music go from his head to his mouth. While Woody couldn’t recall his own wife and daughter, was limited in his communication skills and repeated the same question every few minutes, when they put him on stage with his former singing group, he was able to jump into song without missing a note or lyric even though he couldn’t remember the names or faces of anyone in the group.

Somewhere, there is a US study that shows singing in an organized group on a regular and long-term basis significantly improves the cognitive abilities of people with dementia. Well, my mother has Alzheimer’s and her mother had Alzheimer’s and they both got in in their late 60’s. I’ve been singing in multiple groups since 1992 and I’m praying that something about my ability to memorize complex arrangements for the past 25 years will help ward off the nasty disease. If not, at least I may be like Wood Geist and find immense familiarity and comfort singing.

Spotting Symptoms of Dementia

There are no X-ray glasses for this one, folks. Spotting potential symptoms of dementia is nothing more than noticing signs of drastic changes in physical behavior, emotional behavior or mental stability. Unfortunately, those same changes could mean that the person is going through menopause, suffering from mild depression, or developing an easily treatable medical condition like thyroid disease or high blood pressure. However, because people have rights, because of strict HIPAA laws, and because it is not against the law to be crazy, we have a brief opportunity to encourage people to voluntarily get the mental health help they need before the disease progresses to a point where the person will no longer cooperate and our only recourse is the court system.

To complicate matters further, bizarre behavior for one person may be normal behavior for another. That means it is up to us as relatives and caregivers, neighbors and co-workers to figure out whether the behavior is unusual enough to raise an alarm. Many people just aren't willing to get that involved. Why? Because what if they're wrong? What if they're right?

Regardless what you do, there is potential for a negative outcome:

• Stay silent - you could endanger the person with dementia.
• Speak up - you could embarrass a person who does not have dementia.

But there is also the potential for a positive outcome:

• Stay silent - you may avoid an embarrassing and hurtful situation for the person who does not have dementia
• Speak up - you may prevent a person with dementia from harming themselves or someone else.

It's a coin toss and a very unpleasant one. THAT is the real madness of dementia: identifying it and getting people into treatment before the disease takes over.

So let's assume that you've made the decision to look for symptoms - and frankly, I believe that's the right decision even if you risk offending somebody- what do you look for? Keep in mind, I'm not a doctor. I'm a daughter. So there may be PLENTY of things I don't know and have not seen. But here are a few jumping off places:

• Not sleeping - I'm not talking about ordinary insomnia here. My mother started staying up at night. She would go through her papers and belongings and tell us she was cleaning or organizing or working on some project or another. But she'd be up most of the night.
• Repetitive conversations or phone calls - Now, we all know that the older we get, the more likely we are to forget who we've told what. But a person experiencing early symptoms of dementia may be more like a scratched record. They may ask the same question within moments of you answering it. They may call you several times a day thinking it is the first phone call. 
• Muttering - People with dementia often mutter to themselves. They may not even know they are doing it. Or, they may be responding to voices in their head.
• Voices - Yes, they may actually hear voices. When my mother first started hearing voices, she described them to me as a crowed room with everyone talking at once. She couldn't make out what anyone was saying. This was before she displayed any other signs of dementia. I was alarmed but thought she maybe it was white noise from an ear infection and told her to go see her doctor which she did. I never knew for sure what the doctor said. Because of HIPAA laws, I was not allowed to talk to the doctor so I took Mom's word for it that she was fine.
• Hiding and losing things - While Mom was not sleeping, she was also hiding things which she would later forget she hid. She would hide her medications, her ATM card, her favorite dress, and her late father's briefcase.She would lose her cell phone every single day and one of every pair of shoes she owned.
• Accusing people of stealing - All those things my mother lost or hid? Yeah, she accused her grown children of stealing them and she was absolutely serious. When my grandmother had Alzheimer's, she had a red coat that she insisted the neighbor broke in the house and stole. It became routine for her to call the police and for them to go to her closet and show her the red coat hanging there.
• Does not accept reality - That red coat story? Well, my grandmother said the neighbor had come back in the house and returned the coat to the closet to make her look foolish. My mother did similar things. She would insist somebody had crawled in her window and I would show her the dust was undisturbed. The burglars were clever and put the dust back after they left.
• Angry outbursts - This was a toughie for us to notice. My mother was prone to angry outbursts her whole life. And she'd always accused us of stealing things so we really didn't recognize this as a sign of dementia. But if a person who is normally kind suddenly becomes combative and verbally abusive, it is easier to detect as a sign of the possible onset of dementia.
• Shadow people - my mother began seeing people, animals and things that weren't there. She saw shadowy people climb in her window, people peeping at her through the kitchen window, and people climbing her fence.
• Hallucinations - This one is also tough unless you are with the person when the hallucination happens. My mother thought there were cows in the middle of the road while we were driving down the street, she would hand me invisible things, and see things floating in the room. Then, as the disease progressed, so did her hallucinations. She did the most humiliating and undignified things like defecate on the floor but she thought she was in her bathroom.
• Illogical recollections - If a person doesn't drive a car and says they drove to the mall and spent the day shopping, red flag! If a person says they've been cleaning house all day and the place looks like an episode of "Hoarders", red flag! People with dementia are not experiencing full time reality and may be giving you an account of something from weeks, months or years ago that they genuinely believe happened today.
• Odd clothing - When people who have always dressed properly begin wearing mismatched clothing, forget a bra, wear one shoe and one snow boot, they are not working with the same mental tools they once were.
• Butterball naked - For real. If your loved one answers the door naked because they can't find their clothes, their clothes are in the wash, somebody stole their clothes, or they don't know they are naked, giant RED FLAG.
• Accidentally taking wrong medication or wrong doses - This is a big one. People with dementia cannot take their own medications. They forget. They take too much of one or not enough of another. So if you suspect dementia, check the prescription meds. See what dates the medications were filled, check the dosage and count the pills. If the math doesn't work, there could be a problem.
• Not wanting to bathe or shower - It is very common for people with dementia to become fearful of water. They will often say they have already bathed when it has been a week. If you notice filthy hair and body odor, check the tub and shower to see if they're being used.
• Forgetting to eat -  I don't really understand it but it is very common to forget to eat or to recall eating a meal that never happened. For this reason, adults with dementia may go long periods without eating unless reminded.
• Weight loss - dramatic weight loss may be a sign that someone is forgetting to eat. My mother was thrilled to be dropping weight and thought it was because she was dieting. She told me it was because she was eating so much soup. But when I checked her pantry, I found the same four cans of soup I had taken her to the store to buy two weeks earlier. I had marked them each with a Sharpie.
• Diarrhea - There are a lot of reasons that people with dementia experience diarrhea:  not eating but still taking in plenty of fluid like coffee and water, medications, etc. If it becomes chronic, however, this could be the beginning of the next symptom on this list.
• Loss of bowel and bladder control - Something happens in the body where signals slow down. One of those signals is the one that tells the person to hold their bowels or bladder. With my mother, this was a gradual loss but with many patients I've know, it was a sudden loss, like a light switch went off and they were never again able to live without adult diapers.
• Weeping - Unexplained crying can be a sign of a lot of things. In early stages of my mother's dementia, sometimes she did not even know she was crying. But she developed PBA (pseudobulbar affect) where she could not control her laughter or crying. Not all dementia patients develop PBA but it is very common for them to recall and cry over past losses and disappointments as if they are occurring right now.

All of these sound like obvious warning signs but they are not. Each one begins very subtly. They begin mildly and progress. Nobody thinks about asking their mother to see a psychiatrist the first time she walks around with untied shoes. And, she cannot be forced to go. She is an adult with rights and is assumed competent until proven otherwise in a court of law. But it is in these early stages that we have a brief window of opportunity to get the person's cooperation before dementia takes over. This is chance to ask them to put us on their HIPAA forms so we can talk to their doctors, to request MRI's, and to make a list of their medications and doses. Because later, when the disease progresses, they can can say 'no' and when that happens, the only way to help is to go through the legal system.

Madness and the Stages of Grief

Recently, I was asked a question about Alzheimer's and the five stages of grief as defined by Elizabeth Kubler-Ross. I think the question was meant to ask if Alzheimer's patients experience these stages with regard to knowing they have the disease. If they receive the diagnosis early enough to be aware of their condition, I guess it's possible. Who knows for sure? Once the disease sets in, something like that would be very difficult to evaluate. BUT, for those of us who love somebody living with Alzheimer's, I think it is a certainty. Or, at least that has been my observation.

Like Groundhog Day, I've experienced the five stages of grief -  Denial. Anger. Bargaining. Depression. Acceptance - over and over and over. 

Some losses of my mother's major physical abilities and cognitive skills actually do feel like a death. A piece of my mother has died and I will never get it back again. Maybe it's the piece that wanted to have lunch at Chili's and order the same quesadilla salad every time. Or, maybe it's the piece that taught herself to crochet elaborate afghans. Or, maybe it's the piece of my mother that could walk, watch television, and hold a spoon. 

The first time I recognized the five stages of grief in myself was when I realized that my own mother had actually totally and completely forgotten my name.

• DENIAL- I couldn't believe it. No way. It was impossible. She was just tired. She was just having a memory burp. Don't we all do that? She wasn't fully awake yet.
• ANGER - It was not fair!  Why me? I saw her all the time! She remembered my brother's name and he was three hours away and saw her less frequently than any of her kids.
• BARGAINING - Maybe if I remind her every time I come in the room by saying, "Hi, Mom, it's Mary", I can reverse this thing. 
• DEPRESSION - What's the use? I can't help her. I can't save her. I don't even want to get out of bed in the morning.
• ACCEPTANCE - Okay. This is our new normal. At least she still knows who I am. 

Each loss seems greater than the one before, like a harsher death. Not recognizing me when I came in the room was a harsher death than forgetting my name. Losing her ability to communicate with me was a far worse death than forgetting my name or not recognizing me. And, with each progressively more painful loss comes a longer period of grieving.

Sometimes, acceptance for one loss does not arrive before another loss begins. When that happens, and because people progress through these stages at different paces for varying losses, there may be times depression for one loss overlaps anger for another. Or, bargaining for one loss overlaps denial for another. At times like these, I do two things (1) seek help from my support system and/or (2) step away and go somewhere quiet where I can "be still and know that He is God" because I am most certainly not God.

• Support System -  my friends, church members, neighbors, doctors, etc. who will recognize unusual and unhealthy behavior and will hold me accountable for taking care of  my mental health. My support system cannot be made up of solely family members. They are sharing my losses. People grieving together can console one another but are less likely to be able to pull each other out of the stages of grief since we're all experiencing one stage or another.
• Stepping Away - we all need perspective. Soldiers cannot see the battlefield if they stay in the foxhole and we cannot self evaluate if we don't step outside of ourselves. Neither can we get perspective on our lives if we're always in a room where the television is on, people are talking, dogs are barking, doctors are coming in and out, or equipment is making a racket. We all need quiet time where our brains can process what we're feeling and we can come to terms with our own pain. For me, part of that is acknowledging that none of this is in my control and my mental health is too high a price to pay for something I cannot change. 

Coping with Alzheimer's is, as I've said before, soul-sucking madness. Not much I can do about that. But with some action on my part, some recognition of what I'm experiencing, and a willingness to be held accountable and make corrections, I can soldier on through the madness without sacrificing my mental health.

Soul-Sucking Madness

I had such high hopes for this blog when I began writing it. I was going to change the Alzheimer's cycle of hopelessness and sorrow with laughter, wisdom, and clever anecdotes of problem solving. It was going to mirror my once very active screenwriting blog by creating a regular following of  readers that I would be devoted to. I would help them! I would share my rapidly accumulating knowledge of aging parent issues and prevent each and every one of them from falling into the pits I had tumbled into and from slamming into the same brick walls I had.

Man, was I naive.

You see, what I didn't realize was that (1) I didn't know anything yet (2) I would be wholly unable to write with both arms mired in emotional quicksand and (3) I would be so sick of other people's Alzheimer's info, testimonials, blogs, suggestions, crowd-funding pages, and events designed to "raise awareness" (as if we aren't aware), that I couldn't stomach the thought of inflicting more verbiage about Alzheimer's on people who are already inundated with conflicting information from every Alzheimer's source in their live from the internet to doctors, lawyers, the Department of Aging and Disability, Alzheimer's foundations, nursing homes, social security, insurance companies, and even family members.

It's exhausting and a huge part of the soul-sucking madness that surrounds the life of anyone who loves somebody with Alzheimer's.

But, the more I answer questions about Alzheimer's on Quora, the more I realize there are people out there who don't need another scientific answer. They just need practical day to day responses from people who have been there instead of carefully worded explanations by doctors who want to avoid potential medical malpractice lawsuits and foundations trying to be all things to all people affected by Alzheimer's. That's not helpful at all.

We all need help.

Some days, I visit my mother and spend the rest of the day in bed. It's a daily battle with depression which I'll talk about in another post. Combating that depression is a way of life because every day that I visit my mother, I live through her death. Yet she lives. That, too, is soul-sucking madness. Thankfully, I have a strong support system that holds my sanity accountable. That, too, I'll talk about a little later.

So, let's use this blog to talk about Alzheimer's from a practical place and leave the scientific questions for Google.

Stages of Madness

Because who has time to blog, that's why! And do people even read blogs anymore? Actually. it's more like I've been AWOL from blogging because having a parent with Alzheimer's is a full-time, all-consuming, gut-wrenching, sleep-stealing occupation.

But dang-it, I know things.

My desire has been to preserve my mother's dignity but the  more people I come in contact with who are floundering in the legal intricacies of senior adult care and who are suffering with the feelings of utter isolation and hopelessness that come from thinking your parent is the only one who eats her own boogers, walks to the dining room naked, or uses his penis as a Thompson sub-machine gun to open fire on Nazi soldiers every time a nurse walks in. . . well, dignity be damned, it is like cold water on a raging fire when somebody  who has been there and done can honestly say, "I understand."

So, let's get real.

Whose dignity have I really been protecting? At this "stage", the mother I knew twenty years ago - -  even twenty months ago - - is gone. In her place is an innocent but volatile childlike person, an infant in a seventy-year-old body. She is a person wholly unaccountable for anything her former self did, said, thought, or neglected to say, do, or think.

So, what is this "stage" my mother is at anyway? I want to define it. I want to label it so when people ask me, I have a definitive answer like, "she has Stage 3 Alzheimer's and I am so thankful for your prayers."

But I cannot do that because there are no definitive stages. Oh sure, we use them. That's what we do as people. We label so the part of our own brains that demands answers is satisfied. But once we satisfy the "I need a definition" part of our brains, the "I demand a solution" part kicks in and the result is frustration and disappointment because we began on a false premise.

And,  we make poor decisions based on that false premise:

"That stage was supposed to last at least a year or two. Why did it only last three months?"
"He is not dying. He is still only stage 2."
"This stage will last several more months. No need to research assisted living yet."
"We are not calling Hospice to help her a few hours each day. She's still only Stage 1." 

Knowing what CAN happen and what WILL happen is good but putting a timeline on it is useless because there are no definitive "stages". There are only guidelines.

Some support groups say there are three stages while others say seven. As  I've mentioned before, the statement "if you've met one Alzheimer's patient, you've met one Alzheimer's patient" is probably the most accurate statement about Alzheimer's I have yet to hear. My own opinion is that every single person will experience dementia differently and nobody can say this "stage" or symptom will last a certain amount of time and that one won't.

Imagine a staircase. The very top is perfect mental and physical  health. The bottom is the opposite. And, let's make it a spiral staircase because that is what it feels like. You with me? Spiral staircase descending into utter loss of memory and body failure.

Each individual will undergo changes at a different rate and, from what I have seen, it is nothing like "step one, then two, then three, etc." as a person slowly goes down that staircase.  Nope. Nothing like that at all.

Let's say your father is on the fifth step from the top right now. Life isn't too bad. He improves and goes up a step or two. Then a setback sends him down one or two steps. This goes on and on. Better one day. Worse the next. Today, he can do something he could not yesterday but tomorrow, it may be gone again. Generally, though, he is hovering around that fifth step.

Step five is your reality.

Then, one day you realize you haven't seen that fifth step in a week or two and you want to fix it. What can we do? Increase this medication or decrease juice? Change bath routines. Buy clothes that do not button. Whatever. You gotta try. You have no choice. But while your father is in a perpetual state of getting a little better and then a little worse and then better again, you are now hovering around the ninth step and you will likely never see that fifth step again.

Step nine is your new reality..

No lie. This staircase sucks. Are the steps on the staircase "stages"? Probably. But they do not fit on a chart or in a list because, while my mother may not be able to use a fork on step five, your father may not lose that ability until step nine.

The randomness of it all is maddening.  This symptom for one but not the other. Sometimes progression is fast. Other times, slow. Severe for this one. Mild for that one. Only dementia for your mother but dementia and Alzheimer's for mine. Mild memory loss here and major body function issues there..

No doubt, it is madness. If you have a loved one with dementia or Alzheimer's, my reality and yours are not the same. But we are both on a staircase. Your staircase is different than mine. Your steps are different and you move about it differently. Your staircase probably even spirals differently. But we are both in a perpetual state of trying to push somebody back up those steps, even if only a step or two, knowing full well we will never again reach the top of the staircase.

That, for me, is the most maddening part of it all.

Madness on the Move

Albert Einstein said that the measure of intelligence is the ability to change. I don't know if the deterioration of cognitive brain activity due to dementia and Alzheimer's can be called a loss of intelligence, but I do know that change is not something a person living with dementia can readily adapt to or accept.

Change is loss.

For our mother, what a difference six months makes. And what a difference it does not.

Mom has  moved into a new facility and so far, it's utter hell.  "Swanky" is what she calls her beautiful new room and elegant dining hall and landscaped courtyard. And she's right. It's lovely.  But the move has all but erased what progress we've made over the months  in mitigating her aggressive behavior and her general acceptance of her need for assistance.

And, change, to Mom, is loss. Every little loss compounds all her other losses and she relives them all again. The loss of her home, her pets, her furnishings, her career, her former husbands, her exciting youth – she relives the loss of them all.

Each and every one.

We've seen this before. Mom's first assisted living center took weeks for her to accept but as her dementia progressed, the relative independence of her living situation became dangerous. She needed more intense supervision and skilled nursing. After a brief hospital stay, Mom moved to a second facility where, once again, she had trouble adjusting. But she underwent physical therapy, speech therapy and occupational therapy for the 100 days that Medicare would fund her recovery and about the time she decided she loved the place, her time was up and a permanent spot could not be found for her there.

Another change. More loss. More "I want my life back" even though she cannot read a medicine bottle or walk to the bathroom or do any of the mechanical things it takes to live alone.

So, off to her third and hopefully FINAL living center. Once again, the adjustment is miserable. She's hostile She's got new aids, new nurses, a new room, new neighbors, new routines, and new furnishings. One thing I've learned about dementia patients: they need consistency. They find comfort in the familiar. They feel safe in their routines. They need to recognize faces. When you disrupt the things they've come to depend on as stationary, it's like yanking their walkers right out from under their feet and they relive the pain of losing their independence.

There are all kinds of quotes about change and how lack of it causes the mind and body to decay. If this is the case, Mom should be flourishing in her new environment because she's experienced so much change. But her reluctance to accept those changes is natural and common for patients with dementia and Alzheimer's. For Mom, it compounds her mental and physical issues and gives her something to mourn.

Day after day after day.

We do have our light moments, though.

I'll concede that while it is agonizing to watch Mom's aggression, intolerance, and distorted memories manifest themselves into physical and emotional combat with anyone who happens to be in the room, these moments are peppered with absurdities that would evoke pity were my sisters and I  not so desperate for a breath of relief, even comic relief.

"Kitty, kitty. Here, baby, come here," she says as she stirs her coffee with her index finger.

"Mom, your cat is not in your coffee cup."

"Oh, I know. I know. I'm just checking."

We prefer these lighthearted moments of confusion to the accusations, insults, paranoia, and delusions, but we see an increase in both when Mom has to move.

Change exacerbates her dementia.

So, my best advice to anyone considering moving a parent with dementia or Alzheimer's is to weigh carefully the necessity. We had no choice the first two times but given one, we would not move Mom again..

Change is loss.

Every. Single. Day.