When It Comes to Caring for Your Parent with Dementia, You are Alone.

When It Comes to Caring for Your Parent with Dementia, You are Alone. May 1, 2015
Photo Source: Flickr Creative Commons by Sohel Parvez Haque https://www.flickr.com/photos/sohelparvezhaque/
Photo Source: Flickr Creative Commons by Sohel Parvez Haque https://www.flickr.com/photos/sohelparvezhaque/

Before I do anything, I want to thank Public Catholic’s readers for their caring and kind suggestions and ideas about my problems with my mother’s dementia. I am in the process of following up on several of them.

You folks are the best.

Next, I want to apologize for going dead silent on you the past couple of days. My personal situation drug me down too far to write. But I’ll be back. I just needed time to deal with my own emotions.

I had a big tubful of hope when I put Mama in the hospital for an in-patient diagnostic. I thought that they would see the problem and come up with something to help my mother — and me — sleep through the night. The quickie convo with the doc Monday dashed those hopes to the ground. Help ain’t coming.

I’ve spent the past few days living in dry-as-dust land. My heart, my head, were full of dust. Maybe the reason I was so dusty is that I cried so much; tears of anger, tears of despair, tears of grief. I prayed and prayed. Then, I went through the angry phase, and again, I prayed and prayed.

Now, to use a phrase from my horsey days, I’m at the point where I can sit down in the saddle and ride. Sometimes, to paraphrase Robert Frost, the only way out is through.

Here’s a quick take on my feelings right now about what people face when they are trying to care for their parents.

First, we do not get any information from our docs. By that I mean that the only things I’ve learned about Mama’s medical situation have come from reading on the internet and attempting to diagnose her myself. Here’s a list of the information I’ve gotten about dementia, what to expect and how to handle it from our medical practitioners:

 

 

Did you hear the crickets chirping????

Now, here’s a list of the medical help and advice I’ve gotten about dealing with Mama’s many symptoms, including hallucinations, night terrors, etc:

 

 

Again, did you hear the crickets????

We once had a family doc who took a history, listened, and explained. This enabled her to treat Mama appropriately, and allowed us to take care of her at home. I had no idea at the time that this level of care was totally unique. When she retired, I began going from one doctor to another, trying to find someone who would replicate this level of care.

I’ve read a lot literature about dementia that comes out with this statement: You are not alone.

This is untrue. People who are trying to care for their parents with dementia are completely, absolutely alone. Unless they have a lot of money — and I mean a lot of money — the solutions that are offered to them are to (1) Warehouse their elderly parents in a medicaid nursing home where they will be left in bed all day and ignored, or, (2) Euthanize them.

This last is a real annoyance to me. Every time I write about my mother, some dirt bag tries to leave a comment advocating euthanasia. Every. Single. Time. The effect this has on me is to harden me toward people who advocate euthanasia. It also illustrates just how low we’ve fallen as a society.

The solution to this problem is not to warehouse people with dementia in sub-standard nursing homes with inadequate staff and a don’t-care attitude. I will also add, because it appears that I have to, that murdering them is also not a solution.

Euthanasia, death with dignity and all the rest of that rot are just nice names for murder.

If we spent a fraction of the effort advocating for help for people who are caring for their elderly parents with dementia that we spend on trying to pass laws to kill our elderly, we could solve the problem. Much, in fact most, of the problem lies with the medical profession.

I’m not sure when it happened since I’m healthy enough not to need much medical care, but we’ve arrived at the era of match-the-database-to-the-lab-results medicine. It seems that docs today don’t diagnose, they collate. The patient is totally secondary in their considerations.

Here’s an example from my past dealings with medical professionals. My husband and I took a weekend trip to Dallas a couple of years ago. I left Mama with the kids. She got sick and the kids took her to the er. The er doc ran a lot of expensive tests, including a cat-scan, said there was nothing wrong with her and sent her home.

I got a call in Dallas from that good ‘ole family doc — the one who took histories and listened to her patients — telling me that Mama had left a confused message with her answering service. I headed home to find Mama in desperate straits.

I took one look at her and knew what was wrong: She was dehydrated.

Me, with my master’s in business, did a better job of diagnosing than the doc in the er with his medical degree and all his tests. Why? I did something he evidently never considered. I looked at her.

This particular episode was the beginning of Mama’s won’t-drink-water spell. It was a little slice of hell, getting water into her.  We had to work with her and work with her to get her to drink. Then, for reasons unknown, she started drinking again and we haven’t had that problem since.

She went through a similar period where she wouldn’t eat. We got her though that one, too.

Now, it’s night terrors, hallucinations and what I gather from reading on the internet is called “sundowning.”

I called a lot of docs this week, including several neurologists. It turns out that neurologists won’t see you unless you’re referred by another doc. One neurologist’s appointment maker told me that princess doctor wants all her patients to have an MRI and about a gazillion other expensive tests already done and in the chart when she meets them.

Think about that. This is many thousands of dollars worth of tests that she’s demanding without so much as knowing the patient’s name, sex, age, symptoms or anything about them. If that isn’t trying to diagnose by test, I don’t know what you’d call it.

What these folks don’t see is that medicine is more than collating test results with a database of illnesses. A computer can do that. In fact, can do that. I have no medical training, but I’m plenty smart enough to collate databases. Medicine involves a serious interaction between doctor and patient that these docs have evidently been trained to avoid.

Without a full history and an exam that includes listening, not just to what the patient says but how they say it, without an application of actual clinical knowledge and skills that come from observing, listening to and treating real live people, medicine just doesn’t work.

If docs won’t believe what their patients tell them, then treatment is reduced to what can be replicated in lab tests or in front of the doc. If you have gastroenteritis, do you have to throw up in front of the doc to get something for nausea and vomiting? That’s where we’re heading. In fact, dementia patients and their caregivers are already there.

The danger of relying on tests alone is multifarious. First, as in the case of my mother’s dehydration, the doc may not order the right test. Second, without a history and an exam, the doc may not know how to interpret the test even if he or she accidentally orders the right one. Third, not everything shows up on a lab test. Fourth, even if the doc gets the right result — which is somewhat akin to throwing darts at a wall and hitting a bull’s eye, the patient is out of the loop. With long-term illnesses, the patient must be in the loop to get a good result.

Database collation medicine, or paint by numbers medicine, works very well most of the time. There are reasons for this. First, with most ailments people eventually get well on their own, even if the doc misses the diagnosis entirely. Second, the majority of aliments that people show up at their doc’s office with can be treated with a broad spectrum antibiotic and maybe something for discomfort.

In other words, most of the time, the doc doesn’t have to know what’s wrong with the patient. They can claim a victory just by prescribing a broad spectrum antibiotic and relying on the inherent resilience of well-fed, comfortably-housed Americans.

If things go past that 1, 2, 3 doh-ray-me level of medicine, they refer to specialists who provide a second layer of paint-by-numbers medicine.

The trouble in all this lies in the fact that when a patient gets really sick with something that requires a bit of actual medical practice, today’s docs appear to be utterly lost. They have a few buttons they push, labs they order and standard things they do. When it gets past that, they’re not much more use, and not more personal, than the internet.

What I’m trying to say is that if you get something really weird, you’re going to have to diagnose yourself. If you get something that’s not at all weird, that’s expected even, but that is complex, like, say, dementia, you’re going to have to treat yourself.

I’ve spent this week being down in the dumps for one simple reason: I was coming to the realization that my family and I are on our own with my Mama. We’re going to have to figure this out and provide the care that gets her through this, and we are going to have to do it ourselves.

Because the sloganeering claptrap out there is a lie. When it comes to taking care of your parent with dementia you really are alone.

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21 responses to “When It Comes to Caring for Your Parent with Dementia, You are Alone.”

  1. I’m so sorry. My parents took care of my grandfather. We intermittently helped. It is a large burden.

  2. Good luck, Rebecca. You are now at the point we were a year ago, frustrated and approaching desperation. We finally got Mom into a good “memory care facility,” where her physical needs are now met round-the-clock , and her remaining mental and social faculties are stimulated by the constant activities.

  3. You mentioned the neurologist situation, referrals etc. Even after you finally get into a practice, as I mentioned in a previous post—trying to get any help between appointments is almost impossible! Believe me—-you have hit the nail on the head—-caring for a loved one with dementia means basically—you are on your own. However, I sincerely hope you find someone who can help relieve your burden. As always, my thoughts are with you, for what it is worth.

  4. Sorry to hear it. I consider it fortunate that, while my father’s mind is rapidly declining, he’s not properly in dementia yet. Having been caring for first my mother (though stroke, vegetive state, and death) and now him (through multiple surgeries, physical decline, and loss of self-care) over the past fifteen years since I had to leave college and ditch my career-to-be to focus on them (my brothers and grown nephews don’t pitch in, since it’s “my job” to care for him), I can understand the personal hell of watching this all unfold and dealing with doctors about it. I can only imagine and fear what will happen to my father, seeing the acceleration of his mental decline of late (there’s that Rubicon of “cleaning up after” an elderly parent that changes a lot of things) while seeing how his physical health actually remains really good for his age. Of course, that all means that he’s fighting me more and more while he looks “fine” to those who don’t see him all the time…

    The point of being entirely alone is the truest part. It’s not just about doctors. If we’re lucky, we get someone saying that they’ll pray for us, but no real support. I don’t know how caregivers with families of their own manage – like I said, I’ve been at this since age 20, so I had to give up school, career, and dating; I’m the youngest son caring for an elderly man and I’m well aware that I’m never going to have the chance to find a spouse, afford to raise a family, or have anyone to care for me in my old age as a result of choosing to care alone for my parents when no one else would. Doctors try to placate the diminishing elder or push the case along, forgetting that we’re doing the same sort of work that they do without training, pay, support, or nights & weekends. And the worst “doing it alone” when one’s parent is facing or suffering from dementia is that you become the target for all their fears and concerns over their loss of independence and fears of change. The one person who my father makes life hell for seemingly as much as possible is me, because I’m there and he knows deep down that I won’t leave him (the way that even he himself is leaving him). With everything else going on because of the choices I made to care for him, that’s one of hardest parts – especially when caregiving propaganda is always about how good the relationship is supposed to be.

    I’m sorry to hear about what you’re going through, and I’m not going to offer any sweet words because that’s all they would be. Just know that, if nothing else, there are others who know how you feel and are whispering the same silent prayers and quiet expletives about the whole process…

  5. My dad had his first stroke about seven years ago–he was 89. After three days, he came to, no residual physical disability and only those of us who knew him could tell there was some difference cognitively. They literally didn’t know what to do with Dad. He wasn’t following the “plan.” That’s when I realized there is no sincere medical care for anyone over 75. I am still blessed with my parents and, yes, their bodies are wearing out, but they’ll leave us when the angels carry their souls, not when some hospital protocol states they’re too old for care.

    • Sadly, you can find the same level of medical incompetence and laziness at any age, but I bet it does get worse with age. I have found doctors who really do care thankfully and have insurance that pays, but I can see that it is a big business of numbers now. There are sites that rate doctors, but as with Amazon or Yelp, you have to ignore some reviews. Also, even if you find doctors who care, they often don’t have answers. Medical science is definitely less science than we have been led to believe. Think about the common diagnoses we have all received: Something-itis which always simply means inflammation of some tissue. You knew that before you even went. It says nothing of the cause. But somehow we feel better knowing the scientific name and getting an RX.
      Rebecca, lean not own your own understanding, but trust in Him. As someone who watched a grandmother with Alzheimer’s for over 10 years, I am praying for you.

  6. Went through it with both parents with similar experiences. However, I know of a neurologist in San Antonio Dr. Van Delden (a woman) who patiently responds throughout treatment. Any question, any concern. The patient that I know emails her when he reads stuff on the internet that concern him. She responds respectfully with answers that show she actually read his email. Praying for you!

  7. Rebecca, if your mother receives any kind of VA survivor benefits you might pursue w/VA. Sometimes there are surprising benefits for survivors, but they take some serious digging to find.

    • She isn’t eligible for VA benefits. But that’s good info for other readers that it might help. Thank you, CathyLouise.

  8. What would you want your family to do for you, if you were in a similar position as your mother? I have told my daughter, who’s love I do not doubt, that should there come a time that I become as increasingly, unmanageable and incapacitated as you have described your mother, that I now, absolve her from feeling any guilt if she deems it necessary for her own ( or the family’s) sanity and health to check me in with my advanced healthcare directive that allows for natural death to take its course ( highly recommend” A Better Way of Dying” by Jean and Eileen Fitzpatrick)… even, if by financial necessity, to one of those ” awful nursing homes” As a person of faith in the resurrection of Jesus Christ, I do not view death as the end or the worst possible outcome of life. I do not want it uncessarily prolonged by extraordinary medical measures or treatments. I told my daughter it won’t matter where my final days are spent here on earth if I reach such a state, because the One who created me is coming to take me home. We leave this earth as we came into it, completely stripped, naked and vulnerable to a suffering that is promised to be redeemed. The only “baggage” we are allowed to take with us is the love given and received……my daughter has packed enough love into my suitcase, in her sweet lifetime, to carry me over. It is enough.

  9. Hi Rebecca, I hear your frustration and sense of abandonment. My God, my God, why hast Thou abandoned me? He hasn’t of course, but our spiritual eyes can’t always see Him when we are wandering in the desert. I’m not advocating either putting your dear mama in a nursing home or keeping her with you; that is a decision only you and your family can make. However, the choices you outlined above (warehousing her in a Medicaid nursing where she will be left in bed all day and ignored, or euthanizing her) are in my experience too grim, too stark, and too extreme. As a nurse who has worked in nursing homes, I know that while there are certainly hideous ones, there are also good ones, and I don’t mean just for people who have money. The nursing homes I am familiar with have separate “dementia” units with higher staffing ratios than the other units (higher even than the skilled care units). The majority of their residents are on Medicaid, but they are most certainly not left in bed all day and ignored. It is almost a point of pride with these nursing homes that residents are up and dressed in time for breakfast. They are bathed every other day, and special activities personnel come in at least twice a day for directed activities that a single patient or group of patients can participate in. Families are encouraged to visit as frequently as possible, especially at mealtimes, because even though residents may not recognize family members anymore, they always eat better when loved ones are there. And contrary to popular belief, the residents are not drugged into submission or even given sleeping medication unless it is indicated. As you just observed with your mama’s recent hospital admission, she CAN sleep through the night. Part of that is because institutional routines are very structured and patients with dementia almost always respond better in a highly structured environment. I know you have visited nursing homes in your area, but I urge you to keep looking. If there are 3 good nursing homes (along with a bad one and a so-so one) in my former area with a population of 80,000, I am convinced that there must be a good one within a reasonable driving distance of your house. Obviously, NO nursing home will ever be able to give your mama the one-on-one care you can give her at home, but if you do reach your absolute breaking point and your own health is in jeopardy, please know that there ARE options. My heart aches for you.

    • I’m looking at faculties, but what I’ve found so far is discouraging. There are a number of good facilities — if you have the money. On the other hand, there are almost no choices — and no good ones that I’ve found — for places that handle dementia if you don’t have $$$$.

  10. I had an aunt who was in an alzheimers ward for 9 years until she died. The particular institution tried to convince her children that she had cancer & that aggressive & expensive action was needed to combat it. The children responded: we aren’t going to put her through chemotherapy in this condition. Give her morphine until it is running out her ears.

    The diagnosis was bogus & she lived another seven years.

    The moral of the tale is that there is a strong incentive to find dubious lucrative disease in terminal dementia patients. 🙁

  11. Your situation reminded me of the following article I read on another Patheos Catholic blog a while back:

    http://www.patheos.com/blogs/rebeccafrech/2015/03/9-things-about-health-care-that-we-learned-this-year.html

    Even though its almost an exact opposite, dealing with the medical aliments of a young child instead of an aging parent, there is some overlap when it comes to the struggle for quality attention and care from health care professionals.

    I think a lot of these problems stem from the leverage insurance companies have in the way health care is administered. They have lists of pre-determined symptoms and aliments that match up with specific tests and treatments. Deviation from these standards make it harder for doctors to get paid by the insurance company, meanwhile, the high cost of medical expenses make it unfeasible to get care without going though the insurance. Its a catch-22.

    In the end, it might be less of an issue with doctors lacking problem solving skills and more with having to operate under a system that actively discourages and penalizes their usage.

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