Why Dementialand Needs an Orientation

There’s a lot people don’t tell you about dementia.

The doctor says your loved one has dementia. Maybe it’s Alzheimer’s. Maybe it’s Vascular Dementia, Lewy-Body, or Frontotemporal Dementia.

The doctor only has a limited amount of time because that’s how our medical system works. You go home. No one teaches you how to live with dementia. No one tells you what challenges might lie ahead. You think it’s about forgetfulness, but you will learn that it’s much more than that. It’s about brain failure, and your brain is the control center for your body. Dementia can cause a person to be unable to swallow and control motion. If it progresses far enough, a person isn’t able to eat, talk, or walk. Maybe no one told you that.

No one tells you what to do when your loved one forgets they can’t drive anymore or when they insist that they have to go to work when they haven’t worked in 15 years. No one teaches you how to deal with a previously mild mannered mother who is screaming obscenities you didn’t know she knew. What do you do when you have to buy Depends for your dad and he takes them off and tries to flush them down the toilet? How do you make sure Grandpa doesn’t leave the house and get lost when he gets up at 3 am?

When your mom starts saying she doesn’t have any kids, should you tell her she actually has three? Should you explain to her that your dad passed away years ago when she asks when he’s coming home? And if your grandma starts slapping you when you tell her she has to take a bath, should you push the issue? How often does she really need to bathe, anyway? No one told you how to deal with this.

I spoke to a woman this week whose mother has dementia. Her mother constantly apologizes to her, making statements like, “I’m sorry I’m not the mother I used to be. I’m sorry I can’t be there for you.” And then they both cry.

After a few years of this, she finally came up with a response. Now she says, “You may be a little different than you were. I loved the person you were, and I love the person you are now.” She says she regrets that it took her years to learn how to figure out the right thing to say.

No one tells you how to help your loved one through the extreme anxiety that may come with navigating an unfamiliar world. No one tells you what to do when they cry but can’t tell you why they are sad. And what do you do when they get really pissed about something that never even happened? What if they think another family member is stealing from them?

You promised them you’d never put them in a nursing home. But what do you do when someone needs to be with them 24/7 and you have a full-time job? How can you break that promise without feeling guilty for the rest of your life? And how do you figure out which nursing homes are best for people who have dementia anyway? Also, you can’t figure out how you’re going to get your 250 pound father in the car and to the nursing home when he says he’d kill himself before moving there.

And when is it okay to laugh? A woman once asked me if she had done the right thing when her husband forgot to pull up his pants and waddled out of the bathroom with his Dockers around his ankles in front of company. I asked what her response was. She said, “I laughed, but I don’t know if I’m supposed to.”

No one tells you if it’s okay if you aren’t always completely honest with someone who has dementia. I recently talked to a man whose dad died of Alzheimer’s. He said, “I wish I have known it was okay to lie sometimes. That would’ve made it a lot easier.”

Although I’ve referred to how a family is unprepared for the challenges they might encounter, the same is true for individuals who have been diagnosed. How do I cope with changing abilities? How do I tell other people about my diagnosis? Am I able to handle my own finances? What can I do to make sure I remember to take my medication each day? (Once someone with Alzheimer’s said to me, “I’m on some meds for my Alzheimer’s, but I don’t always remember if I’ve taken them. Maybe if I remembered to take it, I’d remember to take it.” How’s that for irony?)

There’s a recent research study by the Alzheimer’s Association that suggests less than 50% of people with Alzheimer’s are even told of their diagnosis. How can you prepare for something when you’re not given all of the information?

According to the Alzheimer’s Association, one out of three older adults dies with Alzheimer’s or a related dementia. In a nation where dementia is so common, how can we be so unprepared? Sure, we wait and hope for a cure…but in the meantime, how can we neglect to provide the education and support so many families need? And why can’t we talk about dementia without embarrassment or stigma?

And although I am confident we will someday find a cure, it will not be today. I’m not a pessimist, but I am a realist. Medical technology has increased our lifespan–which has in turn increased the likelihood that we will experience dementia. In other words, we can save you from all this other stuff so you’ll live long enough to get dementia. Yet, we are completely unprepared for the challenges dementia brings.

And it’s not just about old people. I know several people who were diagnosed in their 30’s. And I don’t think I fully understood this tragedy of this disease until I stood face to face with someone who was my age and had just been diagnosed. She even looked a little like me…I went from knowing ‘this could be me someday’ to ‘this could be me.’ There’s a difference.

Alzheimer’s is a fatal disease. Lewy-Body Dementia and Frontotemporal Dementia are terminal illnesses. Dementia kills people. I hate to be this blunt, but I think society’s lack of understanding of the terminal nature of dementia stagnated research for many years. We think it’s just about old people becoming forgetful, but it’s not just about old people and it’s not just about forgetfulness. It’s about total brain failure. Alzheimer’s has no survivors. You will die from it or with it.

I have to be careful when I mention that dementia is fatal. Many individuals and families impacted by dementia don’t realize this. In the past, I have stated this in a very matter-of-fact way, but sometimes it’s the first time that people are hearing it. No one tells them.

There are also positive things that no one told you about. You might smile because your mom laughs at something that she sees…but no one else sees. You don’t care that she’s having visual hallucinations or has issues interpreting what she sees. You’re just grateful she finds humor in something.

It might make your day that your dad thinks he is a New York City subway station as he wanders around the nursing home. After all, he loved the subway and New York was his favorite city. Grandma has been retired as a teacher for many years, but she conducts class in her memory care unit using dolls as her pupils. She finally has a sense of purpose again, and it makes you happy. No one told you that you that such things would make you happy. You didn’t realize the challenges of caregiving for someone with dementia, but you also didn’t know about these unexpected moments in which you would find joy.

No one told you that some friends and family would abandoned you. Sure, maybe they say that they pray for you and think of you all the time, but they aren’t there offering to run to the grocery story or stay with dad so you can go out to lunch. On the other hand, no one told you that some people would step in and amaze you. Maybe they’re not the support system you expected, but they get you through the day.

I advise incoming college freshmen at summer orientation each year. When young people graduate high school and progress to college, they must adapt to a new set of norms, an entirely different culture, and different goals. What worked in high school may not work in college. For that reason, there is an extensive two-day orientation to Collegeland. It includes sessions on financial issues and tips for success. There is no such orientation to Dementialand.

I wish there were an orientation because there are a lot of things about Dementialand that no one told you.

17 thoughts on “Why Dementialand Needs an Orientation

  1. I found this interesting and I am in need of more information. My mom has Dementia and Althizmers. She has for going on 6 years. She lives with me and my husband now. Her husband if 20 years died April 30th and I am afraid this stress will worsen her dementia. It doesn’t seem to so far. Thanks for your posts and articles. Sharon

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  2. Hi Elaine,

    This is an enjoyable read. You’ve captured a great deal of truth in this and I’m certain many people will relate.

    As a psychologist working specifically with people with dementia and their care partners/families, I need to fly the flag for the fact that in many cases people ARE being told all of these things, and they are being educated, counseled and supported through their lived experience. I often have the privilege of associating with other health professionals who likewise provide dementia related support pertaining to all of these changes and challenges.

    Accordingly, could I encourage you to consider softening your wording in future to ‘perhaps no one told you’ or ‘perhaps you didn’t realise’ etc, because ‘perhaps’ this is more factual. Working tirelessly to improve matters for people with dementia, and doing this in the good company of many dementia advocates, I can tell you it becomes tiresome to feel criticised for apparently NOT telling people essential matters and somehow failing people with dementia everywhere.

    Those of us devoted to this aspect of life are working really hard on facilitating greater understanding so please, just soften those ‘nobody’ comments.

    Many thanks of course for what you do.

    Kind regards
    Denise

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    1. Thanks for your comment! I was certainly not intending to insult or offend individuals such as yourself. My pet peeve is that many people who are diagnosed are not referred to have discussions with people who are experts in the field. It is not that you are failing people with dementia. It is that we are sometimes poor at linking individuals with the resources (like yourself) and they don’t know where to turn. In my community, I know very few individuals who have the privilege of talking with the psychologist like yourself at diagnosis. They’re mostly diagnosed by family doctors who have a little expertise in the area and sent home.

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    2. Directed to Denise Craig
      “NOBODY” “NO ONE”, including my mother’s Doctor, educated me on this horrible illness. ABSOLUTELY nothing to prepare me on what or how to take care of her. I am having to learn the hard way…dealing with each delusional episode, I tend to explain it’s not true…but learning to just try to go with the flow of her everyday life.
      I accidentally found an electric bill on mother’s coffee table that had NOT been paid for two months. I then took her checkbooks away, I am having to be in total control of her finances and medications.
      So, YES… there ARE a multitude of family members or like me the only caregiver, that were NEVER told. I have never traveled this road and it is so hard and frustrating. Cannot believe there is not a market on items to help a person with dementia.
      I was formerly married to a psychologist… THEY “think” they have all the answers.

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    3. Hi Jan, thank you for taking the time to respond to me. You are in a really tough position and I can fully appreciate how incredibly tough it is to be thrown in at the deep end to learn on the run. I also fully appreciate that very commonly people are just not told anything, or certainly not enough, or they’re not supported anywhere near enough to help them cope with the role that they find themselves.

      Jan I came to my passion for dementia through caring for my mother. She had a young onset dementia and I was not then a psychologist. I was a busy mother of 4 children and my husband was not supportive. I certainly had no answers and very little knowledge or understanding. I too learned on the go, and then became skilled and formally educated in relation to dementia. I lived the nightmare of too little support, I cried the buckets of tears, I felt as though I failed my mother by my lack of answers, magic wands or patience, and I decided then to do all that I could to support others in our position. I say now I will die in the role that I am in, it is my vocation rather than career, and I will never seek to do anything else because the needs and the ‘deservedness’ of dementia care are profound.

      My only point in response to Elaine is that it is not universally true that ‘no one’ ever tells people… it is far too common that people are not told or supported, but to say that ‘no one tells’ is inaccurate. We need far more care and support in dementialand, yes, and I am doing my utmost to seek this through political channels. I’m sure Elaine is also, hence her article hit such a chord.

      I am on your side Jan, and I absolutely wish that things could be different for you and your family. Kind regards, Denise

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  3. Hello, I am 46 years old and have MCI diagnosis. Since the diagnosis not one person has helped me do anything. I have 8 specialists doctors that I see. Today, for the first time…I could not get something to eat, I couldn’t figure it out…what I wanted or how to get it. I spent the rest of the afternoon embarrassed, scared and confused. The realization of it all has me crying my eyes out. My husband does his best, hes a teacher. He just left to go teach summer school because we have to have the income ~$ 1800 a month doesn’t cut it since I’ve had to leave work. Not one of my doctors have helped me find where I need to go or who to see. So here I sit, hungry and confused. I loved this write up, thank you.

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  4. Love hearing the truth and blunt is just what we need to the point across> My husband has FTD. NO one told us he could be talked into leaving me after 53 yers… Two youngest took him. They do not believe he is sick!!! He has two diagnosis from TWO Top doctors here in LONDON Ontario. WE NEED TO HEAR and KNOW all the facts!!!

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  5. Here are two questions I have for myself, and would love to learn what others think and how they have come to think what they do with respect to these two questions:

    One: Do you think people with dementia ever cease to need love, and/or ever cease to be positively impacted by our love?

    Two: What would qualify one to be an “expert” in answering this question?

    All my best,
    Michael Verde

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  6. I found this to be exact,my husband died from this disease in hospice.i was his caregiver .i felt the guilt because I could not have him home,and had to put him in nursing homes.

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  7. Excellent post! It’s true nobody prepares for this,how do you cope at home caring for a parent with this. Some of these doctors are no help at all, they don’t care, until it happens to them.

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  8. This post is the voice for myself and caregivers of loved ones with dementia. My husband was diagnosed with Frontotemperol Degeneration, behavioral variant, and recently with Primary Progressive Asphasia.
    No one prepared me. I researched and educated myself. I knew the Alzheimer’s website front and back, and read information provided on the Association for Frontotemperol Degeneration website. I learned of the description and progression of this brain disease, the importance of seeing an elder care attorney to get affairs in order and located a monthly FTD Caregiver Support Group, then stumbling upon an FTD on-line forum and a FaceBook Primary Progressive Asphasia private group.
    Even if someone had directed me to these resources, no one could describe the life altering impact this disease causes. Only other caregivers understand what we go through. So when you say in your post “no one tells you….” that is the truth. Why no one tells you in the medical profession of these things you described is because only other caregivers know. We know the daily toll this takes on us. To watch our loved one’s behavior changes, their inability to do what they once could, their repetitive and unusual actions, inappropriate outbursts, all responsibilities and burdens are shifted to us, financial concerns, our future life without them, frightened we may make wrong decisions, and to lose the person we deeply love and are now living with a shell of the person we once knew.
    No one has prepared you for any of this because they cannot. Dementia does not come with a manual or set of instructions. We are on our own and the only ones who can relate and understand are the other caregivers just like us.

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    1. It sounds like you have tried as hard as you possibly can to educate yourself and use all the resources available to you. But you are right-that doesn’t mean you are prepared. I am sure you are now helping other caregivers on their journeys when you connect with them.

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