Recognizing When Your Elderly Parent Has Dementia

whoisheThe other day this comment appeared on my post 15 Ways to Stay Sane Caring for an Elderly Parent:

We moved my 70-year-old mother in with us two months ago, and it is not working out. She has a compulsive eating problem and we cannot afford to keep up with her overeating and strange eating habits, like picking things up off of the car floor and eating them or stealing food from my children’s plates and lying about it.

She has weird issues about authority. We set some limits and boundaries with her from the get-go, and she has continued to ignore them. Simple things like, wear clothing around the house. My husband has seen her naked, eating directly from the fridge in the middle of the night or sitting, naked, in our computer chair looking at stuff online in the middle of the day. She doesn’t seem to think she’ll get caught. I don’t know what this is, or how to handle it.

She sleeps day and night and refuses to shower or brush her teeth. I know that’s depression. I’m having a very hard time finding anyone who can see her who takes Medicare and is taking new patients.

Lying seems to come easier to her than telling the truth. She lies about everything, little and big. I’m trying not to diagnose her, but it would help me understand better. I want to know how to handle this stuff. It is really stressful.

She has not set up a good financial situation for herself. She gets $700 a month in social security and has used up most of her retirement already. We would like to put her in an independent/assisted living environment, but how could she afford that? We certainly cannot.

I am sinking. We are only two months in and I can’t see this getting any better. Advice???

Everyone’s psychology is inextricably combined with the psychology of their parents. For more reasons than we can shake a shrink at, that can of course be profoundly problematic: it’s so hard to tell, basically, where we stop and our parents begin. Everyone suffers from the fuzziness of that line. But that phenomenon becomes a whole new category of problem for people who are taking care of their elderly parents, especially if their parents start displaying the kinds of irrational behaviors that your mom has.

In one way or another, your mom’s been driving you crazy for your whole life. That means that your crazy (and I’m not saying that you’re crazy; I’m saying whatever crazy you have—and we definitely all have some) is wedded to your mom’s crazy. Everyone’s like that with their parents. That’s just … a rule of being human.

Your big problem is that your mom has become actually crazy. Your problem, in other words, isn’t that your mother is depressed. Your problem is that your mother has dementia.

It’s hard for us to be sure when our elderly parents have moved from their usual range of weirdly dysfunctional—which we’ve known all of our lives, which we’ve created ourselves around, which to us is basically normal—to becoming actually, objectively weirdly dysfunctional.

And the core, primary reason that is so hair-pullingly trying for us is because we’re so attuned to the entirety of who our parents are—which is so intertwined with the entirety of who we are—that it is not, to say the least, easy for us to distinguish between our parents’ normal, everyday range of crazy, and the whole new range of crazy of the sort that your mom is now evincing.

You know how you can tell when a person has gone from what amounts to normally/habitually dysfunctional, to having dementia? When they’re virtually incapable of modifying their behavior. That’s the test. A person has dementia when they can’t change, when they can’t stop, when they can’t modify or adjust their behavior.

A person has dementia when they’re acting in unhealthy, unhelpful, manifestly unbalanced ways, and have no choice but to act in those ways. That’s how you know that dementia has come upon them. That’s how you can be sure that they’ve gone from being someone you know to someone you’ll never know again.

It’s tragic. Dementia is awful.

It forces you to mourn for someone who’s still actively living and breathing.

And the really tough thing about dementia is that it comes and goes. An elderly person with dementia doesn’t have a constant reality; their reality—which they themselves are incapable of tracking—is ever shifting. And sometimes it shifts into the place where—surprise!—they are again themselves. Suddenly, they’re back! They’re sane! There they are! And then, just like that, you’re back to thinking that they’re manageable—that, just like with people who don’t have dementia, they’re capable of choosing their behavior.

And then you find them, yet again, naked with their head in the refrigerator. Or wearing their pants backwards. Or licking their dinner plate. Or doing any of a million other things that might be funny if they weren’t so terribly real.

The reason it is so important for you to distinguish between the mother you used to know and the person now living in your house who has dementia—the reason you must make that very difficult emotional and conceptual paradigm change—is because once you do that, everything related to caring for your mother becomes a whole lot easier for you.

Then it just becomes about the practicalities of the situation you’re in. Then you just have a job to do. Once all the emotional baggage has been cleared out of the way—once you realize that, persistent optical illusion to the contrary, you are no longer dealing with your parent, but rather only their unpredictable doppelgänger—you’re free to worry about the only thing you really have to worry about, which are the practical aspects of physically protecting your mother from herself.

Then it just becomes about finding, allocating, and utilizing whatever resources are available to help you with your mom. Then it’s just a puzzle you have to solve, rather than a pit of emotional quicksand you keep having to fall into and then struggle back out of.

I don’t know where you live, but surely somewhere around you is an organization that can help you deal with your mother. There’s going to be some group, or some non-profit, or some regional or state-funded entity near you that can either help you directly, or point you toward the people who can. A great place to start is by seeing if your area has a 2-1-1 number that you can call.

Work the Internet, basically. Discover what’s out there. Assistance for this sort of thing is always first and foremost regional—but it’s very rarely not there at all. You just have to locate it, hone in on it, and then get busy using it.

It’s true that you cannot fix your mother’s dementia. But you certainly can deal with it. Probably not at home; it sounds to me like you’re going to have to transition your mom into a place where they can watch and deal with her in a way that you simply cannot. For now, find out where those places are, what they are, and what it takes to get your mother into the best of them.

You’re a project manager; physically protecting your mom is your project. And there are people and systems near you who can help you with that project—whose whole purpose is to help you with it. Find them; talk to them; work with them.

(Oh—and be prepared, of course, for the grueling truth that, in your quest to protect your mother, the one person upon whom you can count for consistent [and, alas, freakishly creative] resistance will be your mother. Common geriatric dementia looks and acts in all kinds of ways. But the one thing it’s never not is almost ferociously and counterproductively stubborn. It’s a pretty sure bet that your mom will do a whole bunch of random stuff to make your helping her as difficult as possible. Just remember: that’s not her purposefully or willfully doing that, at all. That’s just her dementia.)

Good luck, friend. Please keep us up on this as you move along with it. All our best to you.

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About John Shore

John Shore (who, fwiw, is straight) is the author of UNFAIR: Christians and the LGBT Question, and three other great books. He is founder of Unfundamentalist Christians (on Facebook here), and executive editor of the Unfundamentalist Christians group blog.  (In total John's two blogs receive some 250,000 views per month.) John is also co-founder of The NALT Christians Project, which was written about by TIME,  The Washington Post, and others. His website is JohnShore.com. John is a pastor ordained by The Progressive Christian Alliance. You're invited to like John's Facebook page. And don't forget to sign up for his mucho awesome monthly newsletter.

  • Hannah Grace

    This book, written by a theologian who is also a ph.d. nurse, is an absolute must-have resource for any Christian dealing with dementia.

    http://www.amazon.com/Dementia-Living-Memories-John-Swinton/dp/0802867162

  • Owengirl

    “Common geriatric dementia looks and acts in all kinds of ways.”

    John, you said a mouthful there and I KNOW you have helped a lot of people. Maybe they do not need this info now but will in the future. My family would have been so much farther ahead had we had this one fact when it happened to us. We only knew about forgetting, wandering/getting lost, and combativeness. There was so much more that came before that. Had we known we could have gotten proper care so much sooner. Thank you!

  • Bob Rogers

    Thank you John for writing this. Having helped my mom take care of step dad, I know you have nailed the symptoms, the disease, and the way to deal with it, for sadly, there is no cure.

  • Donald Rappe

    I pray for all those whose family members, including spouses, become demented. While I have lost my parents and brothers to this infirmity, and now my wife is showing some signs, I am thankful that the members of my family have been able to retain much of their basic personalities, including qualities of goodness and kindness. This means a lot in the last days.

    • Jill

      Oh Don, I am deeply sorry to hear this. All my best to you and your family.

      • Donald Rappe

        Thank you, Jill.

  • revsharkie

    The Alzheimer’s Association is an invaluable resource. They have local affiliates and LOTS of information online at alz.org. Another pretty good one online is caring.com, although you have to be good at using your delete key if you give them your e-mail address, because you’ll get a certain amount of mail from their “partners.” That site has a fair amount of sharing of “what works” from folks who are dealing with it now or have dealt with it in the past.

    One person you want to enlist is a social worker who can help you sort through your options and needs. Check with your local hospital or nursing home for possible resources.

    Remember that if she has to go to a nursing home or assisted living facility, that does NOT mean you have failed in any way. You’d be amazed how many people feel that they have if they reach that point where they can no longer care for their parent who has dementia or some other debilitating condition. The reality is that knowing when you’ve reached your limit is actually a success, because it means that your parent will be getting the best care possible for the condition they’re in now. You may have been the best care for the condition they were in previously, but when you can’t do it any more, you have others who know how to take it from there.

  • Barbara Rice

    There are several branches of local government that may be able to help (depending on where they live, it might be under city, county, or state, or it may be privatized).

    IHSS (In-Home Supportive Services)

    Adult Protective Services (usually for abuse or neglect situations, but possibly also for keeping someone with dementia safe)

    Long-Term Care (this may be a subset of Medicare)

    Look also for an Ombudsman.

    http://www.ltcombudsman.org/ombudsman

    Lastly: do not beat yourself up. Caring for anyone is difficult; I looked after my mother as she deteriorated until I simply could not handle it any more. Trying to care for someone with dementia can wreck you and your life, and there is nothing wrong with throwing in the towel when you can no longer keep her – and you – safe.

  • Becky Willingham Backert

    I love what you put out that educates us. I’m a social worker and what you post is often what I point my clients to to read.

  • Nancy Inotowok

    I would also like to make mention that dementia does not just affect elderly parents. my mother’s husband started experiencing dementia in his 50s. because of his age, excellent physical condition, and youthful appearance, the symptoms were not recognized and understood for a long time. (his symptoms were falsely diagnosed as mental health issues.)

  • Bob Rogers

    Well said.

  • Steven Waling

    My mother had dementia so I’m very much in sympathy. She died last year, and part of me was glad her suffering was over.

  • Vicke Denniston

    My mom went through about 18 months before dying. But like Nancy below, she was in her 50′s and we couldn’t get help because everyone said she was too young.

  • mike moore

    I know it’s overwhelming, but there is hope.

    Your Mom needs a hospital or Dr. who can make a thorough diagnosis. Let me come to back to how to potentially find one.

    Given her relatively young age, 70, your Mom may well be affected by multiple conditions which have created a tangled mental web. For example, it is possible (we saw this with my Dad) she’s had mini-strokes, the symptoms of which might not be easily noticed within the context of strange behaviour.

    Such strokes remove social filters, which would exacerbate her behaviour. They can also lead to depression, over- and under-eating, cause sleep disorders, decline in personal hygiene, and the problems with boundaries. My Dad would become completely irrational in regards to simplest of control issues, such as the route one might drive to take him to his Dr. … he’d become irate that you were taking the wrong route, but when asked which route he wanted, he was unable to remember, angering him even further.

    As to Dr’s, friends in a very similar situation – unable to find a Dr.who takes Medicare and new patients – and they began taking their father to ER. Unfortunately, they had to work the system by acting as if they believed he was immediate danger of a life-threatening event. “Is he having a stroke?” “We think he may be having a heart attack.” Etc.

    Once they were engaged with the hospital, the hospital patient counselors were able to help and introduce my friends to organizations and medical practices which could help their father. Financial support, emotional support groups, assisted living possibilities or visiting nurses.

    Good luck, my best to you.

    • Jill

      Sending all my XOXO to you.

  • Judi Gentry

    It is tragic when the body outlives the mind of the person we love.

  • Lori Sievert

    So right on and eloquent. Thanks for putting this into words.

  • Kirsten A.S. Mebust
  • Anonymous

    My grandfather suffered from Alzheimer’s for nearly decade. I barely have any memories of how he was when he was healthy and normal. Through my childhood and young adulthood, I watched him lose everything that made him human…..except that’s not the word, more like lose everything that made him a sentient being.

    I was too young to remember when he stopped recognizing people. I barely remember when they took his car keys away. I remember how the strip of shadow between the elevator and the floor terrified him, and he wouldn’t step over it. I remember when he forgot how to use a toilet and how to use doorknobs. I remember how, near the end, he lost the ability to speak first English, then his first language. He lay there, day after day, year after year, curled up on a bed. That was all. When he lost the knowledge of how to eat, he died.

    By the time he died, his mind had lost any and all ability to understand or interact with the world. The squirrels that ran outside his window had more in common with you or me than he did.

    When did his soul go to heaven, John? If someone keels over and dies, that’s obvious, because their mind and body go at the same time. But for him, he died by degrees, painfully, over many years. Was his soul just stuck inside him all that time, or at some point, did he go up to Heaven to be with God and Jesus and his dear wife, while his body finished dying? I don’t know. But it’s unbearably painful to think that his soul died slowly with him, or was stuck dormant inside of him, suffering, for that long. I don’t know.

    • Jill

      So very sorry. So sorry.

      I have to believe there is mercy entwined with dying. Because I believe in love.

    • Rebecca Harrison

      Dear Anonymous, it must be so wrenching for you to have to have lived through this tragic situation, and now to have the anguish of worrying about your grandfather’s soul. While I am not God, and thus cannot respond with 100% certainty, I am convinced that your grandfather’s soul itself did not suffer in the way his body and mind did. Souls are not physical but spiritual. If anything, your grandfather’s soul was in constant communication with the Divine, and received the peace and solace it needed. So it is with your soul, as well. Trust in the Divine Love, and experience God’s peace. At times such as this, I am reminded of the words of Julian of Norwich: “All will be well, and all manner of things will be well.”

    • Donald Rappe

      Every spiritual metaphor has its weaknesses as well as strengths. I think the time related symbols are a little weak for this sort of eventuality. Rather than “When?” I might ask “With whom?”.

  • http://www.hbot4vets.com Dian Brown

    Your diagnosis of the symptoms is exactly what I’ve seen with members of my family and others, but Mike is right, it isn’t all hopeless.

    When my father was 89 years old, he began to get anxious, fearful, sometimes near-violent, and confused. Through some research and just sheer luck, I found out about hyperbaric oxygen therapy. Unfortunately, the hbot facilities that will treat dementia are private clinics and they are scarce. Insurance and medicare currently cover this treatment for some conditions, but not for dementia.

    Nevertheless, with an investment of less than $5,000.00 (which was done at great sacrifice, but well worth it), I was able to get a series of 40 treatments for my Dad in July, 2000.

    The difference was amazing. I could tell a difference in the look on his face (that blank stare was gone and his awareness was apparent ) within the first 30 minutes of the first treatment. As the treatments continued (2 a day, 5 days a week, for 4 weeks) his short-term memory improved, his understanding and ability to follow directions and general reasoning of his day-to-day functions improved to the point that I no longer had to worry about his daily activities. I wouldn’t have been able to take care of him at home without these improvements because just being able to explain things to him was so important.

    The savings, though, to be able to have him stay in his own home, and no other hospital stays for the rest of his life, meant many thousands of dollars in savings for his insurance company and for our family.

    He died at 92, in his sleep. You really can’t ask for better than that. The day before he had been pain-free, socially pleasant, and enjoyed his meals and visits from friends. The change brought by the HBOT meant that his grandchildren remember him in fond and pleasant ways. I am so glad that we were able to preserve his dignity and his quality of life right up to the end.

    There is currently a bill pending in Congress that would make HBOT available for any acting Military who are diagnosed by a doctor with PTSD or TBI. Hopefully the coverage will be expanded in Committee to include all Veterans. I am very hopeful that, when this becomes law, and as our healthcare system sees the results of HBOT there will be more coverage from insurance for all brain issues. See the Facebook page Hbot4vets Please “like” and share it if you will.

    Sincerely,

    • Allie

      Re: this treatment. Recently read a study that did autopsies on people who had died of “Alzheimers” and found a large percentage of them did not, they had other types of dementia, potentially treatable. There’s not a lot most people can do with that information – doctors mostly are very stubborn about changing the way they diagnose in order to conform to reality – but if you do happen to luck out and get a doctor who listens, it might be worth discussing.

  • Monica

    Thank you. I am going to link my family members to this page; it is perfect.

  • Christy

    Dear person who wrote this,

    Along with the great insights John has provided and other good advice others have here listed, as a former healthcare provider, I can recommend a few more.

    I’m not sure if you’ve looked into seeing a primary care provider (family doctor, GP, Internist). This would be a good place to start and many such providers should and will take Medicare. This is a far more cost effective route than using the Emergency Room for problems it was not intended for. A doctor may run tests and/or refer her to see a neurologist, but it is something within their area of care. There are some physiological (and other neurological) conditions that can manifest as odd behavior and those are worth ruling out.

    There are likely community resources available as John mentioned. Some organizations that may be able to help walk you through finding the care and resources that she needs include Aging Programs. These are usually at the county level (eg: Your County Aging Program). NAMI is the National Alliance on Mental Illness and usually has chapters around the country or a national web site with helpful information. Either organization may be able to help direct you to a Case Manager or a social worker to help you navigate finding her appropriate care and the costs involved. Also worth checking out is the Alzheimer’s Association and the Mayo Clinic web sites. The are reliable sources for researching symptoms, diagnoses and treatments, etc.

    I know you mentioned assisted or (semi-) independent living, but, quite honestly, it sounds as if she has potentially already exceeded this level of care. There are some facilities that specialize in Alzheimers and/or Dementia in order to best address people with these unique care needs.

    There are often support groups for care providers that can be valuable resources of information as well. These are usually free and can be recommended by some of the organizations I mentioned above.

    I realize this is a very difficult time in your lives. I wish you strength and courage as you navigate it. Blessings to you, C

    • Matt

      I agree, there must an internist who takes Medicare. I work for one who does, and with several others who do. They exist.

      The hospital that I work for has a physician referral service. A nurse directs patients to the right doctor based on their needs, their financial situation, and personal preferences. Letter writer, check around to see if hospitals near you have a similar service.

      What a lot of people don’t realize about hospitals is that they are full of people who are willing to help, and if we can’t personally help, we are excellent at referring you. It’s half of what I do at work–get people where they need to go, when they need to go there. Don’t stop asking, and you will find something.

      • Elizabeth

        I’m so glad you added this, Matt. I recently ended up in the ER for side effects related to quitting drinking and smoking. I went to a clinic for prescriptions I needed while I found a local provider. They took one look and said I was in crisis. They paid for a cab. It was terrifying.

        It was the best thing that could have happened. I got financial counseling and basic health insurance. A social worker taught me catchphrases to get callbacks from physicians. I got reams of information. *thumbs up*

  • Mark Thomas

    We own and work at an assisted living facility ….. Thanks for this. It tells what we see and deal with everyday.

  • http://ftdland.com Marlene Geary

    These behaviors are consistent with frontotemporal dementia, which often affects behavior before the other parts of the disease kick in. Best wishes.

  • Brenda in La.

    We lost my mother to dementia over 12 years before she died. It is a cruel disease, robbing the victim of his/her dignity while confusing the family because their loved one is still with them, still alive. We lost her in stages, of course. She exhibited none of the behavior your mother did; she was loving and grateful like a child until she fell deeper and deeper into that awful darkness and couldn’t communicate at all. Your poor mother would be horrified if she understood how she is behaving, I’m sure. Dementia is cruel. That bears repeating.

    I agree with everyone’s good advice. Does she already have a primary care physician? That was mentioned, and it would be a good starting place. We were referred to a neurologist by Mom’s primary doctor, an internist. We live just a tad over two hours from Houston, TX, so for 10 years we made regular trips up and down the highway for doctor visits. There is nothing to give back anything she’s lost, but there are meds that can slow the deterioration, at least slow it some.

    Anonymous, I sat many a night on the edge of my mom’s bed wondering the same things you do. I wondered, when she could no longer communicate with us at all, if somehow she was hearing from God. It haunted me, and it haunts me still, but I tried very hard to give that up to God…..not easy. She did not go slowly, you see, so we had lots of time to ponder. Before the day came when she couldn’t speak, I remember the day she told us she had no memory of giving birth to us, her children. No idea of it, amd now we realize she had lost the memory of who we were at all. At least she seemed to always know my dad. He insisted in keeping her at home, and although not a man of means, he managed to use what he had to hire private help besides having Home Health and then Hospice.

    You should know that there are Home Health Agencies out there, and Medicare covers that expense. Now, they only make short visits, but that is an avenue you can pursue, also. They can direct you to other help, and they are really good for the families, since with them you have people helping to care for your mom, and they will suggest other ideas for you. Again, her primary physician should help you there. I found through one of the Home Health workers who had been seeing my mom about three years that Hospice, which I always thought was only for the very end of life, will care for dementia patients that meet their criteria (shows a certain number of symptoms) for two years, maybe more. That was valuable info.

    Your mom is young. My mom died at 80. I just did the math. She was not yet 70 when first attacked by this disease. It will be a long road, but with the proper help, you will navigate it. My dad kept Mom at home until her death. That isn’t possible for everyone. It would have been hard for us to do it without him. No matter what, as long as you know you did the best you could in the circumstances you were in, you will have nothing to regret later, which is also important.

    Someone mentioned the Internet. Good. Once you’ve had a physician determine what kind of dementia your mom has, you can access the stages of the disease and become much more informed.

    I wish you well, and I pray that you are led to good people. I have a feeling you will be. Don’t give up. There is help out there. If you become discouraged, come back to John’s blog and get new encouragement !

  • Linda Emens

    I work for a hospice organization and see a lot of different kinds of dementia. There are a lot of things that this person can do. First an aging services organization to find out all of the options available . Medicaid should pay for nursing home care. There are garments that can be worn to prevent nudity (they’re called onesies). Also, it sounds to me like her mother may have a particular type of dementia that is extremely hard to deal with but only a doctor can make that diagnosis. (I cared for my own mother who had dementia so I know how difficult it can be and at the end of her life hospice made a huge difference.) With hospice you have six months before the end of life (a guess of course) and it is paid for by Medicare and Medicaid and sometimes by private insurance. My best to this person but there is a lot of help available out there.

  • Singer Muse

    Excellent article! I have been caring for my spouse who is mentally impaired for the last few years. I myself had to go through a very real grieving process, realizing that the man I once knew is no longer that man. But it has also helped tremendously when I decided to deeply love and accept the man he has become. I had to wrap my brain around being gentle and accepting and creating boundaries in such a way as to keep him safe, and continue to make life good and fun and a blessing for him and myself. It has not been an easy journey. I did not expect that the dreams of travelling we had would have to be rethought, I did not expect to have to shoulder the responsibilities alone that we used to share. But each day with its ups and downs can be good days, challenging days, even fun days! Most of the work has been with my changing MY attitudes and expectations, and that has made all the difference.

  • Denise Burke

    I wrote my master of divinity thesis on the subject of pastoral care for Alzheimer patients and their intimate caregivers….if I can help anybody, let me know.

  • Hannah Thomas

    I’m dealing with my mother in the final stages of Dementia. It’s incredibility hard. Sadly, its called the LONG GOODBYE for a reason.

    • Brenda in La.

      Hannah, I understand, and I feel for you. Praying for strength for you. Yes, it is so hard.

  • Debra Cares

    I knew my Dad had progressed into a new level of dementia when I visited him at his lovely nursing home and he excitedly pulled me into his ‘best buddy’s’ room and proudly said, “Fred, I would like to introduce you to my wife, Dee!” Fred sent me a quizzical look and after recovering himself a bit, said, “Eddie, if that’s your wife, I want to meet her sister!”

  • Heron MinzenBee

    So well written, John. And so important for people to understand that, as you wrote, common geriatric dementia looks and acts in all kinds of ways. I realized 4 years ago that what was happening to my Mom was dementia… hindsight shows me that the symptoms began long before that, but I didn’t recognize them as such. So many heartbreaking, intensely difficult experiences and choices… my heart goes out to all who are affected.

  • http://deeplanguage.blogspot.com/ Pamsc

    And if it is your spouse?

    What I like most about this post is: “That’s the test. A person has dementia when they can’t change, when they can’t stop, when they can’t modify or adjust their behavior.”

  • Elizabeth T

    I’m reading and crying at the same time… i have been caring for a mother that i recognize less & less every day. I thought i was going crazy or was imagining things or just being argumentative with the one person who has always been there for me.. I feel like she is no longer there, like i’m mourning her while she’s living.. I feel like my whole life is out of control…she was my rock when my son was ill with cancer, she took care of my dad while he was dying from cancer…has always been there with a kind word, sound advice, a strong shoulder..now she acts like a stranger…often accusing me of being against her, like i am conspiring with others against her. I really don’t think anyone can understand the pain of saying goodbye to someone who is still living except for the people who are actually living through this nightmare. I feel for every single one of you. xx

  • Allie

    Okay, remember on Mother’s Day when I said I was in a good spell with my difficult mother? That’s over. I need help, emotionally, because I can’t take being abused when I go over to help her with my father, who really does need help. She is the world’s most incompetent caretaker first of all. Last week she called me to say he was on the floor and she couldn’t get him up and would I please stop by the drugstore and bring her a THERMOMETER. When I suggested maybe she should call 911 or at least the doctor instead, she hung up on me. What, if it turns out he has a normal temp, she’s going to pretend he magically isn’t lying on the floor?

    She still hasn’t forgiven me for making her call the doctor.

    So today the problem is that I dared to ask her to at least give me an estimate in hours of how long she expected her errands to take, and after five hours I dared to phone and ask how far along she was.

    But that isn’t the problem. I am used to her being a c-word, she has been one all my life. She recently confessed to me that she was so abusive while I was being potty-trained that a coworker of my dad’s took me away from her and raised me for a year when I was a baby. The problem is my father, who is unable to understand or communicate meaningfully about his own condition. Right now his entire lower leg on one leg is hugely swollen and she’s insisting it’s “because he’s an asshole who won’t wear the shoes I bought for him.” Note that this man had several toes amputated because of poor circulation and has heart problems and recently had a blood clot. It’s clearly none of those things and she doesn’t need to talk to a doctor about it. It’s all because he wore the wrong shoes. So I have to figure out what to do, do I go behind her back and talk to the doctor and risk her cutting me off from him completely, and maybe save his life, or do I pray that when he finally does collapse or something obvious that she can’t ignore, he doesn’t die before the ambulance gets there?

    • Elizabeth

      Hi Allie. You need help. Call 911 and get referral information for a local clinic and support groups. I’m not kidding even a little. xo

      • Elizabeth

        Do it now.

        • http://www.havocandshine.wordpress.com Leslie

          Allie–after you call 911, which you really do need to do, dig around for a geriatric department in one of your local hospitals. You will have access to caseworkers and people who can assess your parents situation objectively and provide suggestions and resources. You need that for yourself. Please, you cannot fix this. Really and truly. No shame in it, it is impossible and absurd and sucky. Quite often, as one parent deteriorates, the other follows as a result of the stress and grief. Don’t do this to yourself. Please.

    • Matt

      Elizabeth is right, Allie. Call 911. NOW.

      Your father is being abused. Dismissing serious medical conditions is neglect.

      You mentioned that you’re in Memphis. When you have more time, talk to these folks: (901) 320-7220. This is your local number for the National Center on Elder Abuse. Ask to speak to the social workers at the hospital. Call the police. Talk, and keep talking.

      Your father doesn’t deserve to end his life this way. You couldn’t stand up for yourself as a child–but you can stop your mother now.

      • Allie

        Yeah, comments which don’t suggest that I turn my own father out of the only place he recognizes and have him put in a home apart from the only person he consistently doesn’t freak out at will be given priorities over unhelpful suggestions that I destroy my entire family.

        Seriously, have either of you ever actually HAD relatives? In, like, the real world?

        First of all, as someone who had a 20 year career in social services, I can tell you that no social workers here give a flying fuck what an upper-middle-class white woman who regularly takes my father to doctor’s appointments does. They are more concerned with people lying in puddles of their own shit. Second, if I got them to care, they would take my father away from literally the only person capable of caring for him in his own home and condemn him to a life that he has explicitly told me he would rather die than undergo.

        So, anyone with actual support and advice?

        • DR

          The thought of having either one of my parents leave their home is awful for both them and for me. It’s so gross that we live in a country where we can’t figure out how to help someone live out their last years in the home that they feel comfortable in.

          I’m hesitant to give you any kind of thought because I don’t have any kind of experience (and I’m not up for being spoken to like you spoke to Matt and Elizabeth who were just trying to be helpful, to be honest, that was hard to read but I’m sure it was out of stress). What an awful situation, I hope you find the help you all need and can make whatever tough decisions you need to. Good luck.

        • Elizabeth

          Hi Allie. No one wants to destroy your family. I want you not to destroy yourself. If you ask, and keep asking, someone will give a flying fuck. I’m not qualified to gauge your situation. It doesn’t sound like your dad is either.

          You need to ask someone who is. That was my only point. I’m sorry I hit a nerve.

        • Matt

          All I can say is that I do have relatives, including two chronically ill parents that I help care for to this very day. They have improved, but they have been this way as long as I have been alive, and will only get worse as they age. I know what it’s like to watch your parent be in horrible pain and be powerless to stop it (for various reasons).

          Good luck.

        • http://www.havocandshine.wordpress.com Leslie

          But he is not being cared for in his own home because she is incapable of doing that–am I not reading that right? If I’m understanding you, then frankly, there’s no upside to the status quo. You are not destroying your family. Dementia has beat you to it–no way around it, no pretty way to say it.

          Yes. I had a mother. A beautiful and gracious mother. A 62 year old mother. The last time she was with me, she stole graham crackers from my autistic son and put them in her panties and lied about it, even though I’d watched her. She did that a lot. She told me that I was hateful and I “deserved” my autistic son (whom I hope I do deserve because he is magnificent). She called my friends racial epithets. Binged on laxatives. Threatened to kill herself. A lot. Told my sons the story of her father’s gunshot suicide in graphic detail over breakfast one morning. I had to stand guard in my kitchen to keep her from plowing through every last bit of food we had in the house, just so she could make herself throw up later. She got picked up for shoplifting candy while she was here. She ran away from me when I took her out. Absolutely refused to bathe, calling me horrible, horrible names. She accused my son of stealing her things AND she prayed out loud and often that the demons be removed from him. He was five years old. He has autism and he is fan-freaking-tastic. AND he has excellent receptive language skills, so he understood every word she said. Took my husband aside and told him that I was having an affair and being a whore. That my father was trying to kill her. When it was time for her to leave, she physically refused to go. Had to be carried to the vehicle yelling that she was being kidnapped. That is what my mother became, and THAT is when she was still able to talk. She lived for five more years, just unraveling completely. Yes. In I had a mother in the real world. Oh hell yes, I did. And so, if you are willing to follow his explicit wishes, will you be able to live with yourself afterwards? What will it do to the rest of your life? You have to get out of bed the day after he passes and face yourself. Don’t put yourself in that position. Regards, Leslie

    • spinning2heads

      I’m late to the game, and I have no advice. I just wanted to say I’m pulling for you, Allie.

  • Elizabeth

    These are awful decisions, Allie. No one is saying they aren’t. But if I have to choose between you and your dad’s quality of life and a woman you call abusive, my bet’s on you. You’re a scrapper.

  • http://www.havocandshine.wordpress.com Leslie

    I don’t know if this came up in previous comments, but the Fronto Temporal Lobe dementias are the most likely to cause the loss of inhibition, the food issues, the lying etc. Sadly, I lost my mother to one called Pick’s disease–it truly scraped her away, starting with her executive function down and ending in a year of complete aphasia, almost vegetative state. It is one of the early-onset dementias, with a hyper-sexuality (lovely, I know) component that sets it apart from other forms. The person is essentially going backwards, social skills and higher level thinking unravels–my gracious and proper mother deteriorated into swearing horribly and using racial epithets that made me shudder. I can remember her last visit to us, here in the Deep South–my gosh, what a nightmare! Please, please get the support of a geriatric psychologist/psychiatrist, for your own sanity, if nothing else. It took years for us to realize what was happening to my mother and I don’t wish that on anyone. If the writer would like to talk to someone who has “walked the walk,” I will be glad to listen. It is hard to admit how angry dementia makes loved ones and caregivers, but it is what it is. When this was happening to us, I remember promising myself that I’d do what I could for others in my place. I am sorry. –Leslie

    • Matt

      You’re so right about anger. I care for demented people as part of my job, and it’s hard for me to admit how frustrated they can make me when I’m usually so polite under pressure. They are usually aware on some level that they are deteriorating, and some people don’t deal with the fear very well at all. I quite frankly don’t like how acidic I can be in private after getting off the phone with one of them. But it’s partly sadness that I feel too–I just had a genuinely nice patient get diagnosed with breast cancer, and another is being slowly ravaged by Parkinson’s. There is nothing more heartening to me than a patient with strong family support and a competent caregiver like you, Leslie.

      • http://www.havocandshine.wordpress.com Leslie

        Matt, if you didn’t vent, you’d explode. Be gentle with yourself. This is a Very Hard Thing that No One Expects. It sucks. It just does. Perhaps venting in private (which is really pretty appropriate, if you think about it) will let you do your very hard job a little easier. Anger? OMG, so much anger–How DARE you leave me and still be here? How DARE I be the parent when I still need my mother! How DARE you leave my sons w/o a grandmother who knows them! In my head, screaming all the time, “This was NOT the PLAN!!!” ugh. Such an absurd situation. I am far from home, so in all honesty, I was the one who did the research and found the services and talked to the doctors and listened to my father and told him he was okay, which is funny because we are not close at all, but it was a sort of foot-washing for me. When my mother last visited, I had to take notes and actually write out an observation for her doctor. I felt like I was waiting for my 30 pieces of silver, because I had to lay open all her “secrets.” But it put it in perspective for me. And the time came when I had to research things like the ethics of chemical restraint and whether she was being sexually abused in her assisted living setting. I’m not brave, not a bit, but it had to be done and it was something I could do. I don’t think I could do your job. To watch people “leave” so slowly is more than I think I could bear. Be angry when you can. It makes complete sense. Regards, Leslie

  • Mary

    I am a paid caregiver. One of my clients is an 88 year old woman, who now wants to “go home”, although she IS home. She wonders what she’ll wear, and is very surprised when I’m able to locate her jacket, etc. Today, when I gestured to cover the living room – that the room is filled with her pictures and belongings – so she IS home – she told me that someone has copied them. She is so fretful and worried – is there anything I can say/do, to pull her back into reality?

  • kim clover

    I am here for 4 more days to tell you do NOT call 911. Before you go to prison, put your parent in a nursing home. All the crazy behavior will end up being your fault. If you are honoring their wishes by having them stay at home, you will be held responsible for ANYTHING your parent does or doesn’t do. The constitution allows your parent to refuse medical treatment, to eat rotted food, to live in squaller, to walk around on the roof all day, to smear feces all over you, to not bathe or shower for SEVEN years, the list goes on. This “questionable” behavior is perfectly legal and your parent as well as the police will say their constitutional rights are being honored. Then one day when the dementia gets really out of control, you can be blamed for anything. I mean ANYTHING! Stealing, lack of proper nutrition, dehydration etc, but the most powerful one is abuse. The actual charge that is most popular is aggravated assault. Aggravated means over the age of 65. Big money in falsely charging you with this. I have hired and/or spoken to 9 attorneys, none of which even showed up for my court dates. I am penniless, in debt to attorneys, jobless, now homeless and have 4 days before I am put in prison. Any minimally educated police office who has no training in geriatrics, dementia, Alzheimer’s or mental health has complete power and authority to determine what might or might not have happened in your home, on any particular day, with regards to an elderly person. By the way, I am 60 years old. Also the police left my mother with keys to my car, the car, no running water in her home, she is quite deaf and her eyesight is almost gone. She has pets that I don’t know how or if they are being fed,(I paid for and bought their food) but I am unable to even inquire about her, the pets and the house or I will get another felony for breaking protective orders. Now that the weather is cooling, she will start firing up the gas burners on the stove. She loves fire. If you know a pro bono attorney please find me. My name is Kim. I live in Dallas, Texas. My brother’s phone number is 325-315-8263. He might know where I end up. He has schizophrenia and does not take medication. He is the one that called the police. He has several times. The police were told on previous 911 calls my mother has dementia and my brother has schizophrenia. They apparently had a quota to fill that day. The police chose to brutally slam me face down on the concrete and handcuff me. I did not find out what I was charged for till the next day in the Garland, TX Jail where I spent the next 3 days sleeping on a cold concrete floor with used feminine napkins all over the floor. We had to beg for a few squares of toilet paper and could not wash our hands that were contaminated. Our hands had to be used to cup up for water out of the lavatory and to eat with. The conditions were inhumane. Lew Sterrett was worse. The abuse was horrific, one poor woman had her arm broken by a guard and several others became violently ill and went to parkland on stretchers. I had a head injury and an arm injury. Our legal system sucks! All the attorneys just took my money, they did not even try to represent me. I am innocent.

  • Beth

    I too am experiencing dementia with both my parents at the same time. Dad is frontal lobe, 86 years old, was addicted to Klonipin until I cleaned him up 2 years ago. Then he turned against me. My mom , 86, has the beginnings of stage three Alzheimers. three weeks ago she fell and got 16 stitches on her head above her left ear. Then 8 days later she fell again resulting in a T12 compression fracture. I live in TN and they are in Ohio. I am an only child. I went to visit, dropping my life for 11 days. Abused verbally by my dad the whole time. caught him in many lies. He even crashed the rental car he was using, and wouldn’t own up to it. (Yes I took the keys away 2 years ago, he went around the doctors and me and got the ability to drive back.)

    Friday night while trying to measure a new pair of pants for my mom that needed shortened, Dad verbally and tried to physically attack me. Nurses had to be called to get my dad to leave. He apologized on Saturday and again on Sunday we discussed our differences. I thought we had made some progress, only for him to ask me to leave on Monday morning. This was after a psychotic break on Sunday night where Mom was accusing me of being in the hall and waiting to kill them both. When I came in on Monday he asked for me to leave and go home. I figured after talking with her, that it was him that had the issue the night before.

    He truly believes he is in his right mind. He can take care of her without help. It is painfully obvious to family and friends that he is not okay. He has always been a control freak, now even worse.

    She is physically in very poor shape, unable to stand without help. Can’t get out of bed or a chair without help. Her short term memory is totally gone. He is in a walker too. He has a history of falling too. I suspect he is back on the Klonopin.

    I tried to stay out of his way when I was in OH. I would come in the early morning and visit until he showed up often after dinner. There was no explanation of where he had been all day.

    I enjoyed all 10 days with my mom, laughing and giggling when she was able to. I spoiled her rotten, buying clothes, smoothies, candy, snacks, flowers etc. Always a gift everyday I was there.

    Yesterday they both turned on me. I was trying to get a phone installed in her Nursing Home room so she can talk to friends and family. She stated she was tired of the distrust, whatever that means. Not three days earlier she wanted the phone.

    Obviously I need to set some boundaries with them.

    My question is do I tell them I am, which I don’t think they would interpret correctly, or do I just answer the phone once a week, not every time they call which is nightly after she has sundowned?

    Their home health care team has assured my that they will call Adult Protective Services if he tries to take her home. The hospital has assured me that they would call too. Getting Guardianship is out of the question. He can fool anyone for a short period of time. It is only over months ( the Home Health Team knows this and informed me) that they can see his issues which are bigger than hers.

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  • Elizabeth

    Well then. It’s not a waning Halloween moon with Mercury in retrograde until the witches come out.


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