Recently, a friend of mine contacted me about her concerns caring for her elderly parent. She herself has serious health issues. Her children will only help if there's an emergency and when they do come, they're critical, wondering why the Christmas decorations are still up, they have little sympathy for her fatigue or inability to cope with anything beyond the immediate health issues her parent faces, and they don't want their mother to cry or talk about her worries. She feels alone. She's tried to get an assessment from Home and Community Care, and until she does, no assistance can come from other sources she knows are available to her, including the Department of Veterans Affairs who would pay for all or most of what she needs. It's been 4 months now, and Home Care is still too booked up to get the assessment done.
The irony is that if her health were to fail, if she were to be hospitalized or even die, care for her father would suddenly be available. But as long as she's willing to struggle on, their case drops farther down on the priority list. I know people who work in healthcare, and I know this is nobody's fault. Money is tight and getting tighter, there are restrictions on services, and despite good intentions, bureaucracy comes to feed off itself rather than focussing on the services it's intended to provide. This simply does not work to anyone's advantage. Our modern Western medical system is not designed to keep people healthy so they don't need care, it's designed to intervene in a crisis. Preventing a crisis is not a priority, even though it should be. Some even say that it's not "health-care," it's "sick-care." Until you're sick, the medical system has nothing to say to you. No help is available until you're demonstrably unwell.
Here is part of a message I started to her, with some other thoughts added for clarification. I've edited details to protect her privacy. The fact is, her situation is so common it hardly bears thinking about; when it comes to the elderly, family caregivers provide more than 50% of care today. If a family member cannot provide care, that affects all of us. Yet most people don't even know where to start to get help or even advice. Everyone is sure that keeping people at home is always the best solution, that their problems are unique to them, that their questions will be heard as a lack of trying, an admission of weakness. That's far from the case but the word needs to spread so that all of us can get the care we all need.
I started to say to my friend: Your concern here is that your health is uncertain, there's no backup plan, and despite repeated attempts to get him assessed for assistance you know is available, delays in the system have kept you waiting for more than 4 months now. Without that assessment, you're not able to access the help YOU need to carry on providing care for him in the home. Your healthcare needs mean that at any moment, he could be left with NO care.
It's so hard for us to know how serious our own situation is. In your case, if something happens to you, if you were to be hospitalized even briefly, Home and Community Care would be forced to step in, or your father would be transferred to the first available bed in a hospital or care facility. Given your health issues, this scenario is not unlikely.
In fact, it's very common for the caregiver to die first or be hospitalized, because caregiving is a serious health risk even for a healthy person. This is why I'm suggesting you talk to your own doctor. The system is delaying because of their internal issues, but if you do not get the assistance you know is available, you will be forced to use the system. Home Care is the bottleneck here, preventing you from doing the exact thing Home Care itself will benefit from, continue to care for your family member in their own home, with adequate support from various agencies.
I think part of why I was able to access help is that I went into the situation knowing it was not possible for me to handle things alone. There was never a point where I could have been at home alone struggling to care for my mother. I was willing to take on the challenge, but my mother was intermittently very hostile towards me. Her own doctor said it was "medically unsafe" for us to live together, which meant I HAD to find alternatives. Caring for her myself was not an option. And when a family caregiver is not present in the home, suddenly doors open and help is available. But as long as you're willing to be there, then your case is not high on the list because of budget cutbacks and other pressures on the healthcare system. It's a terrible dilemma.
For us laypeople with no professional medical training, who only know our own problems, whatever we're going through seems unique and insurmountable. For someone trained who cares for the elderly every day, it's easy to know what's normal, and what is not normal or acceptable and could be helped with drugs or other medical interventions. Having professional support can be crucial, but it can be SO hard to get access to!
Many of us are sure we can care for our elderly loved one better than a professional, but that's often not the case. Someone with training can do the same things, sometimes in a less caring or loving way, but sometimes more efficiently and in a way that is less intrusive because there's none of the embarrassment or fear we might bring to things.
I was lucky. I never had to change a diaper for either of my parents, or do any of those tasks that force us to cross a line within ourselves. My mother was hospitalized for 3 weeks in her final illness, she did lose control of her functions, but nurses and nursing aides handled the messy jobs for me, which spared both me and my mother. And this was always done in a caring but practical, no-nonsense way, because these people are trained to do this and they do it every day.
After my father died and I had Mom evaluated, I moved my mother to a group home. Within days, they'd identified issues that made her care very difficult even for them. The same issues had led to Mom's intermittent hostility toward me, and caused much stress and heartbreak for my father, but we coped on our own, figuring this was "just how Mom is." A worker from the group home got on the phone to me, and said, "this is bullshit. She's suffering, the people around her are suffering, she needs drugs. This can't go on."
The group home arranged for a specialist to see Mom. The medication he prescribed made a huge difference, like night and day. With a small regular dose of the right drug, my mother became her true self, "a real sweetheart," a pleasure to be with, as several professionals said about her. I've often wondered how different things might have been if my father had asked for help sooner, if we could have gotten an evaluation and medication for Mom sooner. My father's life might have been longer and happier, but at least, the worst of what he faced could have been made more tolerable.
My father and I only discussed our concerns about Mom in undertones and whispers when she was out of the room, and only rarely, maybe 5 or 6 quick comments in two years. We had a real conversation about it only when he was hospitalized during the last month of his life, and by then, it was too late. As often happens with caregivers, his health declined and he died before she did. I have no doubt that the strain of caring for her hastened his demise.
Two months later, there I stood in the kitchen of the group home, having a calm, practical discussion about my mother's situation with strangers. They were compassionate, concerned and caring, and professional. At one point, the owner of the group home asked, "was your father covering for your mother?" I said, "oh yes. Big-time." He shook his head and said, "that always happens. They think they're doing them a favour, but it's the worst thing they can do." And I realized that my private tragedy had been summed up in one sentence by someone who'd never known my father. It's a commonplace occurrence, it happens to families every day. And there are people who can help, who are trained to handle this.
The hard part is finding the care and accessing the services. But even harder is recognizing that most of us have no training in caring for the elderly and very sick, and that sometimes we are not the best people to do this. Or we need more help to do it than we know how to accept.
Another friend told me the story of how she did a lot of work calling doctors and following leads to get her daughter's tonsils taken out, and the Ear Nose and Throat specialist gave her a high-five for taking on the system. During the time I was caring for my mother, my own doctor said "kudos to you for getting her into care so quickly." He said that very often, the first time the medical system is even aware there's a problem at home, it's when someone has to go to Emergency. Then the family expects the system to step in at that point, and it's very difficult.
What he didn't say is that the person who goes to Emergency, alerting the system to a healthcare crisis involving an elder, may not be the elderly person, it may be the family caregiver. In a caregivers class I took, the teacher said they'll often ask a caregiver who's reluctant to seek help, "what would you like us to do with your loved one after you die?" Because that scenario is just as likely as the one we all assume, that we, the healthy one, will be the care giver, the elderly person will die and we will move on. The healthcare system knows this very well, and they really would prefer not to have two patients in the system needing care. But gaining access to the help we need is not easy. It's not made easy for us unless we rattle some cages, pound on doors, make phone-calls, ask the hard questions and stand up for ourselves. And when you're in a state of crisis, that's the last thing you'll be capable of doing. It shouldn't have to be this way, but it is.
So, I've been eating Paleo, more or less, since October 20, 2012. Three months.
I've bought 5 Paleo cookbooks and probably 30 e-books and shorter guides, read lots of books, watched many videos. To some extent, I don't really need the cookbooks, because I'm a good cook, but it helps to have inspiration. It can be easy to get into a rut. But I confess, I sometimes find Paleo cookbooks surprisingly simplistic. Simple is good. I like recipes with very few ingredients. I'm just surprised someone would need a recipe for beef stew or plain broth.
Then I remember that I've been cooking from scratch all my life. If my family went out for a meal, it was a good meal in a nice restaurant, better than we'd have at home. This was a baseline assumption. Eating out equals a treat, not simply getting out of cooking and never because it was fast. If the food is not as good as home-cooked, my parents or my husband and I wouldn't bother. So knowing how to make stew or broth or other dishes seems effortless to me, something I hardly need to have explained. But that didn't just happen, it's the result of how I grew up, the assumptions and values I was raised with and experiences I've had along the way. It's easy to take your own life history for granted and not see that something so natural for me can be a treasure for other people.
My mother followed Julia Child and other great chefs. She would host dinner parties and plan her menus with great care. So I have it ingrained that cooking is something you would WANT to do well, a skill and craft you can strive to perfect.
I was married for 14 years to a man who took pride in being frugal. We both cooked. He often planned and cooked for large events and parties, I did most of the day to day cooking. We saved bones, meat scraps and vegetables and made a huge pot of soup stock, then we divided the stock into two or three portions, and made a different soup from each portion (as examples, a curried rice soup, a tomato based minestrone style, and a hearty lentil and yam soup, all from the same base). We'd freeze the soups in two-portion size containers, and have that with bread, maybe sliced meat and vegetables, pickles or whatever we felt like eating, as our lunch at home.
We bought a few pre-packaged items at CostCo, mostly things like frozen breaded fish or portions of meat or chicken, and HUGE bags of frozen mixed vegetables we couldn't get at our local supermarket. These were ingredients for meals we'd then cook ourselves. We bought few items ready to serve, or that needed only to be microwaved. We had a huge upright freezer, just two of us, that was always full, of ingredients or of foods we had prepared ourselves. We'd go in on a whole cow or a pig with friends or family members, so we had a stock of meat on hand. We'd get packages of meat from people who hunted. We'd buy produce in season and freeze it for later, when bell peppers can cost as much as fresh meat.
So for me, the idea of cooking everything myself is nothing new. Following recipes is not new. I need cookbooks and blogs for ideas on what to pack for lunch if I won't be at home, or Paleo-friendly snacks. Getting caught on an all-day shopping trip with only the Food Court as an option is not the best situation for making good food choices. Even a farmer's market can be problematic at meal-time, if the only items for sale need to be cooked or processed to be edible, or you're already maxed out on fruit for the day and need something substantial. When your companions opt for bagels and cream cheese or ice cream, or other scrumptious looking easy fare, you need to have a plan to ward off temptation, or some Paleo friendly snack in your shoulder bag. This is where cookbooks and blogs can be invaluable for tips and tricks.
And I came of age in the 1970s, when Frances Moore Lappe's Food For a Small planet was popular and vegetarianism was starting to become mainstream. I lived in a town that took everything counterculture seriously, and learned how to cook with brown rice and lentils, how to use whole grains, why sugar was bad for you. When I was at art college, we would challenge each other to go without sugar for a week or a month, and share our experiences. Then I went to university in a much larger city, met people from other cultures, learned to love other foods. Art historians LOVE good food, so we would have amazing potlucks when I was in grad school, where everyone brought fabulous dishes and shared recipes, and we would talk about each dish and what was so great about it. We appreciated food and talked about it like, well, art historians: the colours, the textures, the way the flavours blended or stood out.
My personal experience with food and cooking is, I now realize, vast compared to that of many people. And, I must grudgingly admit, perhaps my age is a factor here, that I grew up at a time when stay-at-home moms were common, and learning to cook well, or at least decently, was expected for most mothers and wives. Maybe it's not as easy for people who grew up in two-income families or with single parents, without the model of cooking as something that took up a good portion of the day and could be done well. And I grew up in small towns and both my parents were from small towns, where take out food simply was not an option decades ago.
But I know a woman, older than me, whose mother saw cooking as a necessary evil. She wanted to be helping out on the family farm or reading. She felt that cooking was not as important as picking fruit or studying, even though cooking and food were obviously necessary. Cooking was not "real work," it didn't contribute, in her mind, in the same way that orchard work did, and it wasn't important the way mastery of an intellectual topic could be. So it's not even a generational thing or about where you grew up, it's also about the specific qualities your family emphasized and saw as valuable.
Implicit in my own upbringing was the sense that food was important, that cooking tasty, nourishing food was a critical part of a happy home, a major contribution. Both of my grandmothers were good cooks, and both regarded that as something to be proud of.
I don't know if my maternal grandmother loved cooking 3 meals a day every day for a family of 5 kids plus assorted friends and relatives. In fact, I'm fairly sure she did not LOVE it all the time. Even cooking for two can get tedious day in and day out. I don't even know that she was a GOOD cook. But the assumption in my mother's family was that people cooked, that home cooking tasted good, and it was something you would want to do. The jokes about home cooking maybe not being anything you'd want to eat have never made sense to me, so that tells me being a good cook was a baseline assumption in my mother's family. And I know that my mother's paternal grandmother would run across town with Swedish specialties for the grandkids, so piping hot from her oven she had to wear oven mitts. Mom said maybe she thought Mom's mother never fed the kids, from the way all of them fell on everything she brought and devoured it like vultures.
(As a side note, one of her specialties was Swedish oven pancake, which became a Christmas tradition in the family. And so much a valued tradition that one of my cousins took pictures of his own Swedish oven pancakes this Christmas morning, and emailed them to me. See below, "food is love.")
I know for sure my father's mother was a good cook. I remember her meals. I remember that when we visited, she made a point of making things she knew someone in the family enjoyed. She always made roast beef because she was sure my father loved her roast beef dinners more than anything. Finally, my mother broke it to her that my Dad ALSO really loved her fried chicken and he wished she would sometimes make that. My father loved his mother's strawberry shortcake so much, my mother spent decades perfecting shortcake like her mother-in-law made.
I was well into my twenties before I realized it was possible to say, "no, thank you, Grandma, I don't NEED another piece of chicken/slice of beef/potato/Yorkshire pudding." It still did not go over well when I did say it, it didn't WORK, but it was POSSIBLE to try to turn it down! That took adult fortitude and gumption to figure out in the face of an old-time Grandma!
Maybe that's what people need to get, that food is love. Food is not simply nutrients or a chore, it's something we need on many levels. Food is nourishment and comfort, a way of giving love to family and friends, and ourselves. Maybe if we saw that as its PRIMARY purpose, and really believed in that, we'd have less inclination to just grab a burger on the way home or eat a packaged meal. Cook from scratch, or at least from ingredients you combine yourself, set the table even if you're alone, or at least use a plate, not the pot. Pack yourself a nice lunch. Make meal plans and cook food ahead so you have real food when you're hungry.
The time and energy it takes to cook and eat a meal is not wasted. Grabbing something quick is sometimes necessary, but it doesn't nourish our bodies, or our souls, the same way a home-cooked meal can. Getting that, really getting it, makes Paleo cooking a pleasure for me. I leave out a few ingredients now from the classic dishes (no potatoes in the beef stew these days), or I follow a recipe to learn how to work with unusual flours or nuts in place of flour, but the methods are the same. After several years of feeling there was nothing I could eat, Paleo cooking has brought me back to my roots, back to the understanding that we don't merely eat to live. Food is love, food is life.
If you know me, you may have heard me talk about my allergy, or whatever it is, to grapes. I used to work in a winery. Now I can't even drink wine made from grapes. While I worked at the winery, I gradually developed general stiffness so severe, I had a hard time getting out of my car or getting up off the toilet. No pain, just stiffness and a kind of weakness. I had other problems at the time I was seeking medical help for, and once I felt better, I realized my life at this time was a haze of misery.
I had a sinus infection that wouldn't go away, sleep problems, stiffness in all my joints and eventually, I injured myself and had to stop working. I had 6 weeks of physiotherapy, yet the inflammation and weakness continued. My doctor kept insisting I was depressed, even though two psychologists and a counsellor said formally that I wasn't.
Long story short, I discovered I was having allergic reactions to a number of things, the most urgent being wine and grapes. I googled "allergy joints," and the first result was an article in the Journal of Bone and Joint Surgery from 1946. A rare but recorded reaction to certain foods or drugs is joint pain or stiffness, even psychological reactions. It can mimic arthritis and muscle or nerve problems, and can drive patients to see orthopedic surgeons. It's actually the sheaths covering the tendons and ligaments, occasionally even nerves, that swell and cause the pain and stiffness. This is called angioedema. It used to be called angio-neurotic-edema (neurotic referring to nerves), but people thought their doctors were saying they were making this up, so the name was changed. This reaction has been noted as far back as 1895, by no less a light in the medical world than Dr. William Osler. Case Study #1, a woman who was initially dismissed as neurotic, who turned out to be allergic to grapes and grape wine.
Bingo! I have a link to that article on the desktop of my computer and on my iPad. I even printed it off for my doctor. She refused to read it, insisting I was just depressed. Fast forward 4 years, and it turns out I have severe obstructive sleep apnea and assorted food sensitivities. I got a C-PAP machine for the sleep apnea, I watch what I eat, and I have a new doctor. I sleep well, I have no more sinus issues, and I have so little pain and stiffness I never need pain killers, although I do take a natural anti-inflammatory every day.
Yet I still have trouble believing that something as nice and innocuous as grapes can be bad for me. Grapes? Who doesn't love grapes? And grapes are in everything. If it's wholesome and good for you, chances are, it's got grapes in it. "Sweetened with fruit juice" means grapes. Trail mix has raisins in it. Raisins are wholesome and full of iron.
Raisins and grapes are GOOD for you!
Well, not for me, unfortunately.
Yesterday morning, I took a shower and tried a new skin oil from one of my favourite companies. I've used lotions and bath gel from the same line, very nice, very soothing.
On and off yesterday, I worked on cleaning up my front entry, a landing between two floors. I'd been using the front closet as a catch-all spot as I moved in, and things just stayed there for, well, a while. While I was at it, I set up a work table in my basement and unpacked a big box full of Christmas stuff to clear space for the bins of art supplies I brought down from the front hall. Nothing strenuous, and I never lifted anything really heavy.
Later last night, I had a lot of pain and stiffness in my upper thighs and lower back, to the point I could hardly get up from a chair or the couch. I thought, "what the heck? Did I really work that hard? Man, I must be out of shape! This is pathetic!"
I took a shower before bed, and I was shedding an awful lot of skin from a couple of spots. I also felt achey stiffness under my arms as if I was coming down with something. I thought, "wait a second, I haven't been exposed to anything infectious lately, this has to be a toxin my immune system is fighting. What is it?" I mentally ran through everything I'd eaten. Nothing different, except one new jar of olives. But, I mean, olives? Not one of the foods I have trouble with. Not a likely suspect.
Then I remembered that new massage and body oil. Checked the label, and the first ingredient? Grapeseed oil.
I'd never read that label. I ordered it online, just got the product and barely even read the main label, let alone squinted at the fine print. This could not have been power of suggestion.
I love the products from that company. Unfortunately, they don't publish full ingredient lists on their website and the store near me has closed, so now I have to stick to products I've used before, or accept that a new one may be a crapshoot.
This is one of the pitfalls of using products with organic ingredients. They could contain something in its natural form that I react to. But using only synthetic ingredients or highly processed ones isn't a good alternative. Then I'd be thinking, "WHAT am I absorbing into my body NOW?! Sodium glycol? Yum!"
The good thing, in a funny way, is this proved to me, yet again, that grapes and grape seed oil DO cause a reaction in me, and I'm right in avoiding it. It also showed me I feel good enough now, that my baseline is health and feeling good, I was able to pinpoint a reaction the same day.
I went to my dentist yesterday. In my regular semi-annual checkup, he found several minor problems. This was my second visit to fix those. It turned out that, even in 3 weeks since my checkup, some of the issues had corrected themselves, or the work he'd done last week was enough to let other problems resolve themselves. Your mouth is a very dynamic place and your teeth and gums are always repairing themselves and shifting around.
He commented on how my dental health is really reflecting the choices I've made. Now that I've moved back to the town I lived in for 20 years, improvement is visible even in a short time. I'd noticed myself that I used to have decent teeth but my gums were a concern; now my gums seem to be fine, especially for someone in their 50s, but my teeth needed work. So the soft tissues in my mouth had gotten healthier, even as I was going through all the work and stress of sorting and organizing my parents' house to sell it, buying a house, worrying about money and all the decisions that come with buying and selling a home. The minor issues with my teeth reflected this, through teeth-grinding at night, as well as clenching my teeth when lifting boxes and furniture.
My dentist took an impression of my front teeth, because some have shifted and may need some orthodontal intervention, but with the obvious return to health he's witnessed in even 3 weeks, he felt it was best to wait and see if things will shift back again in time.
He commented on what a strong clear arch I have in my lower jaw, that this is really rare for a Canadian woman. I asked him to clarify, and he said that most women in Canada (and presumably men, but their bones are generally bigger and more robust, so the effect is not quite as drastic) eat so much sugar, their teeth collapse into their jaw and the bones deteriorates, so their lower jaw is, essentially, a mess. Mine is not.
We talked about the importance of nutrition. I told him I've decided to "go Paleo," which he applauded. I said that I still eat more fruit than they recommend, because I find myself craving fruit if I don't get enough. Better to eat more fruit than turn to something really unsuitable out of desperation! I said I think I crave the acidity even more than the sweetness. He talked about how whole foods, fruits and vegetables in their natural state, are factories of nutrients, and "Monsanto can't compete with that."
I should point out that I do not have good genes when it comes to teeth. My mother was one of five children, and of the 5, 4 of them had full dentures, none of their own teeth, by the time they turned 25. Only my mother had any of her own teeth left. My Mom had two bridges with artificial teeth, and at least one implant. I have no artificial teeth, only fillings, and all of my own teeth, except for my wisdom teeth. I'm 55.
My father had none of his teeth left by the time he was 45. He was hit in the mouth with a baseball when he was young, which broke several teeth. He lost those and the decay that set in claimed the rest, so after decades of constant pain and dental work, he and his dentist decided removing all of his teeth was the better option. We don't know if this was an environmental problem caused solely by that early accident, or bad genes or both.
My point, though, is that whether bad teeth have been caused by genetics or environment, nothing in my family history says I should have good teeth or dental health. I have a mouth full of fillings. I wear a guard at night to stop me from grinding my teeth and to prevent the teeth drifting from clenching my jaw in my sleep.
So, if I have an unusually good, clear, strong lower jaw, it's not because of good genes in the jaw department. It's because of what I've done in my own lifetime to take care of myself and my teeth.
Personally, I find it frightening to think that a lifetime of what we'd call a "normal" Canadian diet can cause not just cavities, but actual visible bone loss or deformation. Hearing this made me ever more determined to carry on eating whole foods and avoid sugar!
A basic introduction to dementia and Alzheimer's from HealthBC:
SeniorsBC, a page with links to many resources on advance planning, care for seniors, information on housing and housing assistance, and many other useful topics:
Financial strain on caregivers:
Family Caregivers Network Society in Victoria BC, with links to resources:
Caring for Someone with Dementia, from the Alzheimer Society BC. This provides capsule descriptions of many topics, from Self Care to understanding symptoms, planning and so on.
The Alzheimer Society of BC. You are not alone. Whether you've been diagnosed with dementia, or someone you love has been diagnosed, and whether it's Alzheimer disease or another type of dementia, this is the best place to start. The Alzheimer Society runs support groups and courses for caregivers (I took one that was attended by people whose parents had recently been diagnosed, to a woman who was caregiving for 8 elders, to care aides who wanted more understanding of the people they worked with daily. One principle we learned is that "everything we know about Alzheimer's we've learned in the last 10 years. Whatever horror stories you remember about your great-grandfather wandering down the railroad tracks or people in care homes being sedated comatose, the state of care for dementia sufferers has advanced, our grasp of what it means to have dementia has changed, and the support for caregivers is much, much better than it was. The focus now is on "person centred care," and for you or your loved one, that focus begins with you.
How to prepare for talking to your doctor or your loved one's doctor:
I wrote a two page letter to my mother's doctor, outlining various things my mother had done, said, not done that would be normal to do. While modern privacy laws prevent someone's doctor from talking to you about their medical conditions, nothing prevents you from providing information to their doctor. Keep in mind that a person with dementia loses judgement, and they lose their ability to monitor their own behaviour. They may not know how much their abilities have declined. They may not want anyone to know, because they think it's temporary or they're ashamed that they can no longer do things they used to do. They may tell their doctor everything is fine, or that their children/friends/spouse are concerned, but it's really nothing. Fear is entirely normal, for a person who suspects they have dementia, and for their families and friends. And a doctor sees each patient for only a few minutes and goes on what patients say. Unless their attention is brought to a certain symptom or problem, they have no way of knowing it's going on.
Document specific behaviours, including times of day, what she said or did, what else may have been going on (did she just wake up, when had she eaten last, who else was present, unusual circumstances or stresses, distractions). Don't try to interpret or edit, just document, then compare your list with a checklist for dementia.
At the same time, don't assume that all memory loss or confusion is dementia, or that all dementia is incurable. There are 80 known types of dementia, 50 are reversible. Many other illnesses and conditions cause confusion, disorientation, memory loss, even psychosis in the elderly. Seek medical advice, don't make assumptions.
The elderly may not display illnesses the way younger people do. Urinary infections can cause what appears to be dementia or even raving psychosis in a senior. Low levels of salt or elevated calcium can cause confusion and memory loss, and can be life-threatening. I said at the memorial service for my parents, "there is nothing to be gained from denial or delay." The principle in all elder care is "sooner rather than later." Don't wait for a crisis to force you into making a decision.
A few weeks ago I stumbled onto a Paleo food blog and realized, "this is for me!" Since then, I've bought or ordered about 6 books on Paleo and cooked up a storm!
If you're having trouble tolerating foods, read on. If you just want to know what the fuss is about Paleo diets, there's a reading list at the bottom of the note.
For years, I suffered from unknown respiratory problems every winter. In 2008 I went to Morocco and came back with a sinus infection, went on antibiotics for 14 weeks, on and off, which is guaranteed to devastate your immune system and intestinal flora. That fall, I realized I had food allergies and sensitivities. I went back to Morocco for 6 weeks that winter, which, oddly enough, changed my life, maybe saved it. I HAD to find food I could eat, and there's almost no processed food there. Everything is fresh and seasonal. And if I could read food labels in French, well, surely I could feed myself in Canada!
The next year, my father developed cancer and died, my mother was diagnosed with dementia. I had to move back to my hometown to help her. This was highly stressful for both of us. My hometown is a good place to have unusual food needs, so I was able to find things I could eat there, but I was not motivated to cook, and food was not a source of pleasure. I've been an avid cook all my life, so this was a hard time. It was, at best, a holding pattern.
My mother died in 2011, and that year, I gained 40 pounds. Part of it was diet, I know. I'd started eating grains again, comfort food, and too much fruit and sugar. In healthy forms, but too much for my system.
I'd heard about Paleo before, but never looked at it in depth. When I did, I realized that this method of looking at food avoids all the foods that cause me problems. And the point of Paleo is not just to avoid foods known to cause problems for many people, but to enjoy the foods you CAN eat. It's not about deprivation, it's about seeing food as something that will make you whole and healthy. Food is medicine.
Above all, take control of what you eat.
There are several underlying concepts behind the Paleo diet concept, which is not a diet so much as a lifestyle. A primary one is that for more than a million years, human beings were hunter gatherers. Agriculture is a recent development in our history, and ten thousand years or less is not enough time for all humans to adapt completely to thriving on a diet of mostly grains and grain products. But more importantly, even if our ancestors ate grain, it was in a more natural form than the highly processed products we see in stores now. Stone ground whole wheat or sprouted rye is a very different substance than white flour. I'm not even going to talk about all of the refined starches and sugars we ingest. The single highest source of calories from carbs in the US is high-fructose corn syrup. Not wheat flour or corn or even sugar in a form you can see. It's in food you don't even know it's in, in forms you can't recognize, and it's so highly caloric, it's the biggest single source of calories we get from carbs today.
Similarly, modern milk products are nothing like whole fresh milk straight from the cow or goat. The more processed a product is, the less like real food it has become. Low fat milk products are full of carbs and sugars.
If you know anything about food allergies, you know that there are 8 or 9 known deadly food allergens: milk, eggs, soy, peanuts, wheat, seafood, sulfites, tree nuts and sesame. And guess what? Four or five of these are in pretty much every processed food sold in North America. Talk about a recipe for creating allergies, even in people who were only mildly sensitive!
There is a syndrome called "leaky gut," which is not accepted by some medical authorities but has the support of many scientists. Leaky gut happens when you eat foods that irritate your intestinal tract, go on antibiotics and destroy your normal intestinal flora, and some other problems. Your intestines, like your skin, are a primary barrier to toxins, allergens and irritants. Maintaining the integrity of your intestinal barriers is important to good health. You may not be aware of irritation; it may only affect you on a cellular level. In a simple form, think of it this way: the cells lining your intestines have several layers, and as these get irritated and inflamed, they swell away from one another and there will be tiny gaps between these cells. Entire particles can leak through the walls of your intestines into your blood stream, and when they do, they're targetted as invaders by your immune system. This may create more allergies or food sensitivities. It also leads to further inflammation, which may happen in parts of your body unrelated to your digestion. Auto-immune disorders such as hypothyroidism, inflammatory disorders like fibromyalgia or arthritis, even illnesses as seemingly unrelated as heart disease and diabetes may be triggered or made worse by eating foods that irritate your gut.
If you're finding you're becoming sensitive to more and more foods as time goes on, it may not be age or bad genes. It may be the food you're eating that's leading, in a roundabout way, to heightened sensitivities. You may not know which foods cause these reactions; a food reaction can take as long as 72 hours if it's not a direct allergic reaction, so you may not be able to trace cause and effect.
An allergy is a response of your immune system. This will rarely be an intestinal reaction, but hives, itching, swelling, headaches and anaphylactic shock. An intestinal response (nausea, vomiting, dairrhea, constipation) is an intolerance and rarely caused by an allergy as such. There are also food aversions, that you simply cannot get a food down without gagging. And there are sensitivities, which can take many forms. If the problem you have with a food can be treated with digestive enzymes, it's an intolerance, not an allergy.
If you have a problem with stomach acid, see a doctor to be sure you don't have damage to your esophagus caused by acid reflux. But the sensation of acid stomach can actually be caused by not enough acid in your stomach to digest your food properly, which can be caused by an imbalance in your system. This may be the result of recent food poisoning, antibiotics disturbing your intestinal flora, or just eating the wrong foods for a long time.
Practical Paleo (see below) gives some good, concise information about digestive problems and intestinal health.
None of this advice is meant to be a substitute for seeing your doctor or a good nutriitionist or naturopath. There are other factors to optimal health: get enough sleep (it's NOT for sissies!), reduce the stress in your life, find ways to focus on the positive. If you find yourself always cranky or sad or angry, talk to your doctor and see if you have a physical problem or a psychological problem that can be treated. Being in a negative state all the time is a serious health risk, to you and the people around you. Get some exercise, even if it's just a walk. Do something fun. Make stuff so you feel a sense of achievement. And eat good food.
Eating well is more than avoiding the bad stuff. It's about eating a variety of healthy foods that nourish your body, provide nutrients you need, and nourish the good bacteria we need in our systems to help our bodies do the work they do to support us.
One author I read recently said we started to see the onset of "diseases of civilisation" at the same time science began its reductionist way of looking at food, in terms of calories, carbohydrates, proteins and fats.
Heart attacks were unknown as recently as 200 years ago. Cancer was not a feature of life and dementia was uncommon. And this is not because people used to die too young to get this stuff and we live longer; we don't. The notion that people in the past died young is based on skewed statistics. Infant mortality was more common, and even a few people dying before their first birthday pulls the "average" lifespan of a population down quickly. Infection killed people, and accidents often spelled certain death. But the people who DID survive often had just as good a chance of living to a ripe old age as we do. And studies have shown that their teeth were better and their bones were stronger than ours are.
We don't know what the long-term effects of a diet of soda pop, skim milk, burgers, frozen pizzas and store-bought cookies will be. Elderly people alive today grew up on a very different diet than we eat now. I mean, who eats liver anymore, or makes soup from scratch?
The biggest single environmental factor in your health is what you eat. And it's one thing you CAN control.
Food should be about what tastes good, and what has been demonstrated, through millennia, to make people feel stronger and healthier. And if it can be local, fresh and seasonal, even better.
Most of the books below have commonalities. Practical Paleo is great for basic knowledge and a one-stop resource for science, nutrition, shopping tips and recipes. The best books for understanding the science are Deep Nutrition and Primal Body, Primal Mind. Well Fed has wonderful, practical tips for cooking from scratch even if you're living a hectic modern lifestyle. And great recipes from global cuisine!
Most of what's in these books I've read in other places, so this is not weird science. Why isn't your doctor telling you this stuff? Besides the oft-noted fact that most doctors get only a week of nutrition in medical school, doctors also are trained to TREAT health problems, in a practical applied-science way. They are not necessarily trained to track a problem to its root cause. They don't have time to do that in 10 or 15 minutes with each patient.
Our medical system is dominated by a corporate mentality, and by corporations that manufacture drugs. I'm not a fan of conspiracy theories and I'm not an anti-corporate crank. I'm sure most doctors are sincerely interested in making people well. However, when I read that pharmaceutical companies WANT to sell drugs to healthy people, that there's money to be made in promoting illness and no money to be made in making people healthy enough not to need drugs, the penny dropped. We need to take control of what we eat, and we need to stop focussing on poor health and what can go wrong, and focus on good health and what we can do RIGHT!
Even when I was living in my old hometown the past 3 years, living with a lot of stress, I had one cold. Just one. Clearly I was doing something right. I'd like to carry on along that same track!
My husband and I used to save bones and make soup stock. He had clear signs of arthritis, yet no degeneration or pain. After a doctor commented on this, we realized the soup made from scratch was likely why. Bone broth is a cornerstone of the Paleo lifestyle. It puts back into our bodies many of the nutrients we need to keep our bones, connective tissues and even blood vessels strong and supple.
If you tolerate dairy, eat whole milk. Eat real yogurt and real cheese. Don't eat processed dairy, which is hardly even food anymore. "Low fat" foods are full of sugar and other weird stuff. Don't let them in your house. Eat liver once in a while. Eat lots of vegetables and some fruit. Buy local organic produce in season. Use your freezer. Make food from scratch. If you think you're too busy, read Well Fed, which has some fabulous tips on how to eat nutritious delicious food even if you're busy.
There are other principles, but those are the basics. This is not weird food. Nobody says you need to eat a mammoth or crunch down bugs or anything.
Above all, don't take my word for it. Read some of these books. Google "paleo" and see what comes up. There are a few people making money from this, but on the whole, nobody is going to get insanely wealthy from telling you to make your own soup stock and sauerkraut, and buy produce from your local farmer's market.
Ignore the science and this is really just Grandma's kitchen. My grandmother lived to be 97. If you left her table feeling full, it was from too much chicken or roast beef with homemade gravy and Yorkshire pudding, not because you made yourself sick with too many tortilla chips or Dingdongs. Okay, maybe not everybody's grandma cooked like that. Both of my grandmothers were good cooks, they had gardens and grew fruit and raised chickens. They bought beef from the farmer down the road and made soup from bones and scraps. Those Grandma meals made people strong and healthy.
Since I've been shopping for food the Paleo way, I'm bringing home bags and bags of groceries, but because it's all whole food, it costs me $15-25 a bag. Thirty years ago, I figured $20 a bag was good shopping, so this is not costing me a fortune. Seeking out grass-fed or free-range meat and eggs will cost more, high quality produce can cost more, but there are ways of reducing these costs: go in on buying a whole cow or pig with friends, join a CSA to get organic produce regularly, shop at a farmer's market, buy in bulk, get friendly with local farmers, buy a freezer, grow your own fruits, vegetables and herbs. Any or all of these things also help support your local or nearby producers and businesses, and help create stronger communities, which are good things!
The books I've been reading are:
Make It Paleo: Over 200 Grain Free Recipes For Any Occasion by Bill Staley, Hayley Mason and Mark Sisson
Practical Paleo: A Customized Approach to Health and a Whole-Foods Lifestyle by Diane Sanfilippo, Bill Staley and Robb Wolf
Well Fed: Paleo Recipes for People Who Love to Eat by Melissa Joulwan, David Humphreys and Kathleen Shanno
Deep Nutrition: Why Your Genes Need Traditional Food by Catherine Shanahan and Luke Shanahan
Primal Body, Primal Mind: Beyond the Paleo Diet for Total Health and a Longer Life by Nora T. Gedgaudas
It Starts with Food: Discover the Whole30 and Change Your Life in Unexpected Ways by Melissa Hartwigand Dallas Hartwig
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The time you put in as a caregiver for someone with dementia may eat into your life in many ways, it may disrupt your social life and relationships. You may spend your own money on your parent, maybe because they lose the capacity to handle money. My mother began to panic about counting cash, and could not retain sequences of numbers or write cheques without help, but kept her ability to use a credit card until PIN numbers came into regular use. With that, she lost all of her financial freedom and had to rely completely on me or whoever she was with. This is intensely frustrating for the parent, and creates many levels of concern for the caregiver.
All of these factors affect your mental state and your health. I did not live with my mother, for several reasons, but if you live with your family member, your mental and physical health may be even more compromised.
Get support. Find a support group in your area, take a class, find a counsellor. I spent two or three months seeing an Elder Services counsellor with Mental Health, for "caregiver support." Being an adult child caring for a parent brings up many issues. You may have buried resentment or frustration, or issues unrelated directly to your parent, but being in this situation brings them to the fore. Seek help if you need it. If all else fails, try keeping a diary where you write or type out what you're feeling and thinking.
If you have a friend who's been through this, talk to them. There are support groups online if you can't get out. In my community, there was even a caregivers support group held in the afternoon, because many caregivers have to be at home in the evening.
Talk to your own doctor about your situation. Being a caregiver is a significant health risk and your health care provider needs to know that.
You need to do whatever it takes to be healthy, for your own sake and for your parent's sake. And ideally, you want to survive this and go on to have a healthy and happy life.
Make a point of thinking about what you eat. The temptation is to eat comfort food, junk food, fast-food. Every day seems like a crisis, like there's never any time to plan, and it all blurs together. But this is not a temporary crisis, this is your life, and you need to be properly nourished. If food is not your thing, ask a friend who likes to cook for help planning meals. Lay in supplies of easy to prepare foods, healthy snacks and so on. Try to plan the food in your house so you aren't tempted to eat stupid stuff. Your community also probably has resources such as Meals on Wheels. Take advantage of this. Meals are offered at cost and delivered by volunteers. Your parent will certainly qualify, and as a caregiver, you will also. You may even find that your parent's meals can be paid for or subsidized by programs such as Veterans affairs. Research the take-out places or food-for-delivery places that offer nutritious tasty food, and keep those numbers handy. Make eating properly a priority.
Get enough sleep. You are not strong enough to act as a caregiver AND go without sleep. No, really. Sleep is not just for sissies, it's how you recover from your day and how your body restores itself. If you have persistent sleep problems, talk to your doctor. Any health issues you already have will be seriously affected by lack of quality sleep. Take drugs if you need to. You may be depressed or anxious during this time, even if you aren't normally.
If you drink alcohol or use drugs in a recreational way, be aware of the temptation to resort to this. Use mood-altering substances with respect. I would sometimes have a one or two drinks, never more, if I'd had a particularly aggravating day, but I didn't keep easy-to-drink alcohol in the house as a rule for the entire time I acted as a caregiver for my mother. Getting blotto or being hungover is not going to help you cope, no matter how tempting it may seem to step into an altered reality. Find other ways of coping, at least until this is over.
Exercise is a good thing, even just a walk around the block. You may try calming practises, such as yoga, or meditation, but you may also find that these make you more anxious. Some people need to be even more physical than they might normally be, to get rid of frustration and pent-up energy.
If you belong to a church or spiritual community, this may be a good place to turn. Ritual can be calming and reassuring. You may want answers and talking to a minister or priest or other spiritual advisor may be beneficial. If your own spiritual advisor is not trained in pastoral counselling, they may be able to refer you to someone who is.
Find hobbies you can use as distraction. This might be knitting or other crafts, computer games, crossword puzzles. I found that watching TV was the worst thing for me, because it was passive. I needed to be more actively involved in order to stay focussed. Colouring books might be good, or doing sports. You may need to find things you can do alone, because your schedule no longer matches that of your friends. But if you can find time to play cards or other games or activities with friends, go out dancing, go for walks, this will go a long way toward keeping you sane and focussed.
Sense of humour is key! Seek out funny movies to watch, funny books, anything that can lighten your mood. Find ways to laugh with your parent. Laugh at yourself.
It's easy to say, "take time for yourself," but incredibly hard to do that when your parent has needs. With dementia, any small thing can become a crisis, because the person no longer has the ability to cope or to find an emotional balance. You have to become the problem solver and figure out what's upsetting them, how to calm them down, and how to fix the problem. Doing this all the time can become exhausting. If you are also providing physical care, doing housework, paying bills, your life can be completely taken over by this role. Even if your parent gets care from others or is in a care facility, there's rarely a moment in the day when you're not thinking about them, worried about various issues you are now responsible for.
I had no other family obligations when my mother needed me. You may be balancing the needs of children, spouse, siblings and other family members, with the needs of your elderly family member. There's the criticism that can come from friends and family, the well-meaning advice, the suggestions, the remarks they make after a visit where they saw "nothing wrong," and wonder why you feel the need to have your parent in care. And then there are the people who can't help but see your situation through their own needs and emotions, of their fears or sense of guilt about their own parents.
You need to find out how to protect your parent in the event of incapacity, such as an Enduring Power of Attorney for yourself, a Representation Agreement for you to make medical decisions for your parent, an Advance Care directive or plan so you aren't faced with making mind-boggling decisions about end-of-life issues when you're in a crisis state. You also need to consider financial planning, for your parent and for yourself. And face the fact that you may die or become incapacitated before your parent dies, and make a two-tier plan to care for your parent if you're no longer able.
You also need to be aware of the perceptions of others, and that caregivers may be suspected of taking advantage or abusing their elder. Keep accurate records, keep receipts, don't mingle your money with theirs. Even if you have to place their groceries on the conveyor separately from yours or write two cheques, keep their affairs separate from yours as much as humanly possible, so you can show the details if there is ever a question.
I cannot provide advice on dealing with difficult family members, but this is very much a problem for many caregivers. You are not alone in this. It's particularly prevalent when some family members live far away and aren't seeing the elder frequently. They may talk to the elder on the phone and hear the complaints and excuses, they may only see the parent when they're on their best behaviour during a visit and they may assume they know more than the people who are handling things daily. This is so common, it has a name, the Sister from Saskatchewan or the Sister from Seattle.
The number one tip I can pass along is that you are not alone in this. Many people have walked this road before you, or are walking it right now. If someone in your family has dementia, recognize that it's a physical illness, not a mental illness, not a character flaw, not an indictment of your family. It's not your fault. You didn't bring this on yourself or wish for it or somehow enable your parent into being this way. It's an illness, like cancer or pneumonia. Tell everyone you know, everyone you deal with, from the banker to the plumber to your friends and co-workers. Sometimes you need time away from that set of problems and you dont want everyone to know, but you'll find that most people are very sympathetic, and may even offer advice or solutions you may not have thought about. You may find that friends have been through this or are going through this, and that you already have a support group or network in place that you weren't aware of, until you needed it.
The Alzheimer Society has some excellent resources, including support groups, classes for caregivers, online classes and groups, and plenty of articles and information online. Google them for information specific to where you live.
I'll add links to pages with information and resources in coming days.
I'm easily amused. I try to be positive about things, yet I am also driven to distraction by irrationality. Especially if the purpose is valid, but could be achieved with less drama. You'll see all of this in my writing!