“Yes, I know how difficult this can be.”
“I can see that your life will have changed dramatically.”
When serving as a co-caregiver for both of my aging parents, I heard these, and many other similar statements routinely from others in my social and professional circles. While I was confident (and remain so) that these individuals were sincere and meant well, I have to question how much they truly understood the entire scope of what I was experiencing.
Caregiving can be a physically, mentally and emotionally draining job. Caregivers can be easily run ragged with new responsibilities. During a single day, a caregiver may meet with medical professionals, advocate on a senior’s behalf, provide transportation for an aging parent, cook meals, clean a senior’s home and/or arrange for homecare support.
At night, a caregiver’s mind does not shut off.
He or she may toss and turn in bed and be unable to sleep soundly due to worrying about a loved one’s condition. Insomnia becomes a caregiver’s worst enemy. With remembering my own caregiving experience, there were many days when I was continually on the go and trying my best to manage.
I believe the only people who truly understand what caregivers endure are the people that watch and hear of the work of caregivers (ex. healthcare workers; professional psychologists; counsellors) and, most especially, other caregivers.
If you have never walked in a caregiver’s shoes, how can you honestly say, “I understand”?
Don’t get me wrong – caregivers want and need support. I, for one, certainly appreciated all the help that came my way when Mom and Dad were alive. Even years after both my parent’s passing, I continue to believe that caregiving is not an individual endeavor but best achieved with many hands. Please, however, resist making broad generalizations with caregivers. Instead, consider how you can help – even on a smaller scale. A woman I know visits a blind woman on a weekly basis and reads her mail. This act may sound small, but the gesture goes a long ways as, without sight, the blind woman will have no idea of required payment amounts on her monthly bills. Perhaps you could offer to pick up groceries for a caregiver or shovel his/her sidewalks clear of snow? Or perhaps you could give a caregiver your undivided attention over a cup of coffee where you turn off your own cell phone and simply listen?
Considering our country’s demographics and rapidly-aging population, chances are high that you will become a caregiver yourself at some time in the future. It is likely then that you will best realize what a caregiver actually goes through. A sympathetic shoulder can be a great thing; however, saying “I understand” when you don’t will be only empty words.
Resist talking the talk until you have walked the walk.
Replace “I understand” and ask “How can I help you?” instead. It will be far more appreciated.
There is no shortage to the amount of “stuff” that a person can collect in his/her lifetime; however, there can be a shortage of space to put it all!
Seniors often have mountains of personal items (including furniture, electronics, books, photographs, collectables, and so on). When living in a house, a senior will have the benefit of extra room to keep these types of things, when necessary. If and when a senior has to move into a care facility, the square footage is considerably reduced and downsizing will become necessary.
The massive job of disposing of Mom and/or Dad’s belongings isn’t always easy for anybody, explains Shannon Lang – Senior Move Manager with Edmonton, Alberta’s Elder Move Inc. (a company specializing in senior downsizing and relocations). “Parents have grown up in a time when you saved everything – just in case you ever could use it. In addition, parents often spent what seemed like a lot of money when they originally purchased these items and would like to pass their treasured belongings along to their children; however, adult children will often have a full house of belongings themselves. Your home was intended for you and was never intended to serve as additional storage space. Perhaps most importantly, each item is associated with a memory or memories and parents may feel that if they let go of their belongings, they will also forget these stories.”
It isn’t any simpler for family caregivers, continues Lang. “Letting go of the parental belongings is often overwhelming as there is just so much stuff and one often doesn’t know where to start. Adult children may be fearful of giving something away and then having Mom/Dad ask for it back. Becoming the decision makers and making choices about parental belongings means becoming the parent and, therefore, results in a complete role reversal.”
As a former co-caregiver for both of my own aging parents, I was faced with the problems related to parental purging. This began with moving Mom and Dad from their retirement home in scenic Victoria, British Columbia to their former home in Edmonton, Alberta (the rationale here was that Mom and Dad would be closer to my two sisters and myself and we could provide better care). After Mom passed away, I helped to move my father twice more and each time we had to further limit his belongings that he could bring with him.
When it comes to reducing your parent’s clutter, what can you with it all? Before disposing of everything, Lang recommends allowing for ample time. “Downsizing a senior can be a very emotional process. Do not rush and keep your parents involved – remember that these items are theirs and everything has a memory connected to it.”
Begin by distributing a number of parental belongings amongst you and your siblings. Based on an adult child’s interests, these choices shouldn’t be that difficult (my older sister obtained Mom and Dad’s art collection, I took Dad’s stereo system, and my younger sister acquired many of Mom and Dad’s books). You could next donate items to those in-need; Mom and Dad’s pots and pans may be greatly appreciated by a child who is just moving out of the house. I remember selling Dad’s collection of classical music compact discs to a second-hand music store and then depositing the proceeds back into Dad’s bank account.
You could also take possession of smaller items. Personally, I have adopted a number of smaller knick-knacks which once belonged to Mom and Dad (these now sit on my office window ledge) and Dad’s favourite salt-and-pepper tweed hiking hat. I have found that glancing at these items works very well to remind me of my parents while not stealing all of my own space.
You can also hold a garage sale. For better results, coordinate your sale with a neighbour’s sale as these larger, “Multi-Family” events offer more inventory and can be more attractive to customers.
Another option is to rent a storage locker to house larger items (or those you can’t bear to part with or don’t know what to do with …). If you’re wanting to store Mom or Dad’s television set or fine furniture, you may want to look for an indoor, heated storage unit. While storage unit companies often offer locks for sale to patrons, you can certainly provide your own. With a keyed padlock, you may have to physically get copies of the lock key and provide these to other family members, whereas a lock’s combination could be more easily shared. Whether you choose an indoor or outdoor storage locker, know that the monthly cost can quickly add up. Personally, I would advise using a storage locker only for a short period of time to avoid a sizable financial loss.
To save money in the long run, turn the job over to a “senior move manager” As a professional, a Senior Move Manager will come in and make those more difficult choices for you. Lang regularly assures caregivers and seniors alike that she “knows the order in which things need to happen and has the connections to make things happen – efficiently and empathetically. A Senior Move Manager can arrange for all the work to be done meaning a caregiver can spend more quality time with a parent rather than being tied up with sorting and packing. We work with seniors and caregivers and respect their belongings and their decisions.”
On a final note, never underestimate the power of parental belongings as these material objects which can provide significant memories and a strong emotional attachment for many people. Please don’t jump into making hasty decisions yourself (or force someone else to find a new home for parental belongings before he/she is ready to do so). People can experience significant amounts of grief before, during, and after the time that Dad’s armchair or Mom’s desk is gone. While you will lose physical items in the process of parental purging, you will never lose the memories that go with them.
Rick Lauber is the author of Caregiver’s Guide for Canadians, available at national Chapter’s bookstores.
Chances are good that you have played a game or two of hide-and-go-seek in your time. One designated person will go on a merry chase to find other players. Caregivers (those individuals helping and supporting others due to disability, advanced aging, or sickness) also can play hide-and-go-seek with searching for resources to help themselves and their loved ones. Finding those caregiving resources, however, isn’t always as easy or enjoyable as you might think! Although it’s no secret that our country’s population is rapidly aging and the number of family caregivers is ever increasing, those same caregivers often don’t know where to start when reaching out to senior-related programs and services.
From my own experience as a co-caregiver for both of my aging parents (Mom had Parkinson’s disease and Leukemia while Dad had Alzheimer’s disease), here are a number of suggestions of where you can begin your hunt:
Ask your family doctor
As a healthcare professional, your doctor can be a wealth of information as to what is available and referrals. Who better than someone working in healthcare to advise you as to who to reach for healthcare information or services and how to reach them? When you next book a doctor’s appointment for Mom/Dad, come with plenty of questions.
What is one of the best ways to learn more about a destination? You ask someone who has travelled there! One of the best sources of information is someone who has been there and done that. More experienced caregivers are often pleased and feel valued to “give back” and share their “souvenirs” (their own caregiving stories and lessons learned). You can meet other caregivers online here at The Caregiver Space, either through their forums or their support groups.
As just one example, I remember participating in a research study where I was teamed up with another caregiver (in a similar situation as myself) who provided me information and support through regular telephone conversations. Even after the study has ended, we have remained friends. Introduce yourself to others when visiting senior’s centres and/or facilities to ask about offered programs/services, quality of staffing, and personal feedback.
Read local senior’s newspapers
Begin by leafing through the pages for advertising. A new senior’s homecare service may have just opened and wants to introduce/promote themselves. You can also read the published articles … often the article writer will have searched out, contacted, and interviewed a subject matter expert to discuss a healthcare, senior, or caregiving-related topic – thus saving you a great deal of time and trouble.
Keep your eyes open when you are out and about and you never know what you could find. I was waiting at a traffic light one day and glanced over at the car (with prominent signage) which had pulled up alongside of me. As it turns out, this car was part of a fleet of vehicles for a new senior’s driving service – something I had not heard of until that moment!
Visit local associations and/or societies
If your town or city has an association/society branch office dealing specifically with your parent’s health condition, drop in by all means! When Dad was alive, I discovered the local branch office of The Alzheimer’s Society and greatly appreciated their information about the disease, caregiving support programs, and active participation in helping to find a cure for Alzheimer’s disease. Churches, senior organizations, and community associations can be worth approaching as well.
Your local newspaper can serve as a useful tool with finding caregiving help. My sisters and I placed a classified ad when we were looking for an additional companion for Dad and collected a number of resumes in response. For best results, try placing your ad in a weekend edition of your newspaper for increased readership.
Check the Internet
The Internet is truly a library at your fingertips! Caregivers searching for resources can easily type information into an Internet search engine and be offered a vast number of options. To limit those options to what is available more locally, try typing in “caregiving resources AND _____” (your town or city). This should reduce the list dramatically. Before trusting everything you read on-line, question the experience and credentials of the writer.
Although those caregiving resources may seem hidden, with a bit of legwork, it is possible for caregivers to seek them out. And when you find this extra help, the job of caregiving can become much, much easier.
Rick Lauber is the author of Caregiver’s Guide for Canadians (published by Self-Counsel Press and now in second edition). More info at caregiversguideforcanadians.com.
BRRRRR! Is it cold enough for you? When the temperature plummets and icy winds blow, caregivers must remember to not only bundle themselves, but also bundle their loved ones. Mind you, doing so may seem unnecessary or time-consuming, however, seniors (with thinner skin and older joints) can be more prone to the cold, so precautions must be taken – even on shorter trips. Exposed skin can freeze within seconds.
To make outside trips more comfortable and safer, here are a few tips for caregivers:
Dress in layers
A long-sleeved shirt, sweater, and coat worn together are often warmer than just a single layer. In addition, extra layers have the advantage of being able to be removed, if the need arises (i.e. if things warm up outside or you are inside for a period of time). With wearing the extra bulk, your parent may well resemble the Michelin Man, but on the coldest days, it makes far more sense to be warm rather than be fashionable! Don’t forget the long underwear.
Although you may well prefer not doing so, watch or assist your parent with putting on long-
johns. I recall sending Dad into his bedroom a few times to get dressed and then checking when he came out – with his advancing Alzheimer’s disease, I had to confirm that he had remembered to actually pull on his long underwear!
Wear Button / Zip-up Sweaters
Both styles are far easier to manage than “pullovers”. Sweater buttons on cardigans and/or zippers should also be large enough for older fingers to clasp. You may also be able to find a sweater with a Velcro closure.
Select Mittens versus Gloves
Mittens, where an entire hand can be inserted without separating the fingers, are often warmer than gloves. If it is very frosty outside, have your parent wear a lighter pair of gloves underneath a pair of mittens. Remember those long strings which attached mittens together and could be worn underneath a jacket and draped around a child’s neck? These may not be a bad idea for seniors as well, so mittens will not go missing.
Top Things Off with a Warm Hat
It’s a proven fact that the majority of body heat escapes through the scalp, so cover the “roof”! A wool hat will provide optimum warmth; however, ensure that your loved one is not allergic to this material.
Remember Boots with Good Treads
Older parents aren’t nearly as nimble on their feet as they once were and balance can become an issue. An unnoticed ice patch can easily spell disaster for a senior who could slip and fall. Ensure that your parent’s footwear (both shoes and boots) will grip on ice and snow. Another recommendation is to find boots with removable insoles.
After a day of tramping through snow, boots can get mighty wet and removable insoles can be better dried. If you cannot locate a pair of boots to your liking, visit a local running or hardware store to shop for rubberized attachable footwear grips. These stretch to fit different sizes of shoes and/or boots and feature small nails or pegs which will better dig in in slippery conditions.
Choose an Appropriate Jacket
My sisters and I found Dad a longer parka which extended past his waist. We also chose a slightly larger size than was necessary to allow for a few extra layers underneath. When Dad wore the coat, he was quite cozy; however, we quickly found that the jacket’s double zipper often caught in the fabric – believe me, the last thing you want to be doing is having your jacket remain open and be fumbling with a coat zipper in the cold! We took this coat to a tailor to replace the double zipper with a single zipper instead and did not experience any further problems.
Utilize a Heating Pad
I’m thinking here of one of those seed-filled sacks you can toss in the microwave oven for a couple of minutes before heading outside – wrap this around Mom or Dad’s neck to help keep him/her toasty warm!
Pack along a Car Blanket
You can either place it on your vehicle’s passenger’s seat for your loved one to sit on or store it for use, when needed.
Want to hear more from Rick? Check out his book, The Caregiver’s Guide for Canadians.
It’s familiar and it’s comfortable, but is it safe? A person’s home, as they say, is his/her castle; however, when it comes to personal safety for seniors, there comes a time when that home may have to be reevaluated, renovated or replaced.
The problem here is that seniors often dig in their heels and indignantly refuse to move wanting to retain their independence and not wanting to leave what they have known and loved for years for as long as possible. Fair enough! For family caregivers, the decision to move Mom/Dad away from their home can also be agonizing as it signals further mental or physical decline. Additionally, family caregivers are often left to deal with the senior’s home after a move (as a former co-caregiver, I well remember trying to find and work with a realtor to list my parent’s senior’s condominium unit – a more difficult process as the condo in question was located in Victoria, British Columbia while I was living in Edmonton, Alberta – 1.5 hours (by plane) or 15+ hours (by car) distant. Moving a senior, no matter how you do it, requires managing an inordinate amount of “stuff” likely gathered over the years as well as many significant personal memories.
Whether your aging parent continues to live at home locally or elsewhere, there are steps you can take to make his/her home more “senior-friendly”.
Remove throw rugs
It’s time to start thinking about functionality rather than decoration in a senior’s home. Unless these rugs have a rubberized backing, they can easily slide when someone steps on them – possibly resulting in an unexpected and unpleasant surprise for a senior.
Tuck away electrical cords
Electrical cords stretching across a living room can become a tripping hazard. Instead, clip these to the wall. On a related note, take a close look at Mom/Dad’s phone cord – is it also just laying loose?
While very comfortable, cushioned couches may actually trap a senior who may not have the strength to stand back up again from the chair. Swap that favourite arm chair for a lift chair instead – these can be gradually lowered and raised, thus helping a senior to sit or stand. Excessive furniture can also hinder a senior’s path … if he/she is in a wheelchair, is there room to maneuver?
Install a stairlift
Upper and/or lower floors of a senior’s home can become inaccessible for seniors not able to tackle a set of stairs. Climbing up and walking down stairs can become tiring and unsafe (it’s easy enough for a senior to lose balance and fall either forward or backward on stairs). If nothing else, ensure that the stair railings are secure and/or paint the steps alternating colours (to help a senior distinguish between them).
Old eyes don’t often see as well as they used to and vision can be blurred. With brighter lights (or entirely new light fixtures), you can help a senior better see what is ahead. Illuminating a hallway is important as more shadows may be cast in a narrow area.
Request “Call Display” for the telephone
A senior’s telephone can serve as a lifeline; however, it also invites unwanted calls from people trying to take advantage of a senior. With the “call display” feature, a senior can easily check the name and number of the caller before answering. Some telephones can even “announce” the name of the caller as well.
Mount grab bars in the bathroom
These are best placed around the toilet, the bathtub and in the shower. Wet bathroom floors can become a deathtrap for weak and/or frail seniors. You may also want to consider removing the bathroom mirror … seniors with dementia can become confused and alarmed to see another face looking back at them. While you are working on the bathroom, place a seat in the shower. Mom/Dad will feel far more secure showering when sitting down. A walk-in bathtub may also be an option. A door or panel on the side of the tub opens to allow for easier access inside; when closed, that door or panel is sealed shut by the water pressure.
Doing this will benefit an aging parent using a wheelchair or walker. To comfortably roll a wheelchair through, a doorway should measure a minimum of 32 inches across. And, it may be enough to just be able to enter a room … are there any sharp corners involved? Those in wheelchairs need a little more space to turn.
Typical round doorknobs can be difficult for older hands to grasp and turn. Instead, exchange these for levers which can be easily pushed down. Many faucet taps (including for the bathroom and kitchen sinks) can also be round. Change these as well.
Consider an exterior ramp
This would be, once again, for the benefit of wheelchair-bound seniors. Such ramps can be attached to the front, side or rear of a home and can even be built to double-back on themselves or circle around if space is limited.
Arrange for visitors
Whether you, a friend, a neighbor, or a paid homecare support worker stops in to check on your senior parents, these visits can help to monitor your parent’s health condition as well as provide some socialization as your parents may not be getting out as much as they might have before. In the case of family living at a distance, set up a webcam at Mom or Dad’s home. These devices are not that difficult to install and/or use, and can provide a friendly face and peace-of-mind for those family members who are unable to come visiting on a more regular basis.
With a few modifications, aging parents can remain in their homes for longer. Knowing that they are comfortable and safe can ease a caregiver’s mind significantly.
by Rick Lauber, author of Caregiver’s Guide for Canadians
It can be an agonizing decision to make; however, it’s one that many of us have to ultimately face at some time in our lives. Placing your mother or father into long-term care often signals increased mental or physical deterioration – the senior’s previous home becomes unsafe and unsuitable for someone to remain living there. When the time comes for you to choose a long-term care facility for your parent(s), remember that all such facilities are not created equally. Carefully consider the services and level of care offered … will a facility be appropriate for your parent’s current (and future) healthcare needs which can easily change? If not, know that you may be called upon to repeatedly move your parent which becomes increasingly difficult for both of you. With my own father’s Alzheimer’s disease progression, my family moved him three times before he passed away.
You may well hear a number of terms bantered about describing different facilities. The lines between these terms may be vague. Understand and differentiate between these options. Among the most common terms are the following:
Home care consists of support services that can be provided to seniors who remain living in their own homes. The types of support can vary dramatically, depending on a senior’s needs. Mom could be bathed, toileted, dressed and fed in the morning; Dad could have his lunch prepared for him and then be taken for a walk.
These types of facilities are ideal for seniors who can still live and function quite well on their own. These facilities typically offer residents their own apartment-style unit (as a bachelor or one-bedroom, for example) with kitchen facilities and a small refrigerator. Residents can typically rent or buy such a unit and home care services can be provided.
Much like independent living, these properties consist of individual apartments but also feature various common areas, shared by the residents. Supportive living facilities offer enhanced security to the resident and resident’s family through around-the-clock emergency response as well as the convenience of prepared meals and housekeeping services.
Here, a senior can receive more hands-on health care and management. Staff in assisted living facilities can help with medication reminders and delivery and bathing and dressing a resident. Such personal care can become uncomfortable, tricky and risky for family caregivers to provide.
This is, frequently, the final stop for a senior with advanced-health issues. Long-term care centres are staffed full-time by practiced healthcare professionals who competently provide any number of required services to a senior.
Admittedly, looking at long-term care facilities is a daunting task for caregivers. There is the time involved to visit each as well as any lingering emotional baggage. Looking for secured units for my father made me face the stark reality that he was not getting any better. I confess to feeling almost envious of Dad who remained completely unaware of forthcoming moves and the amount of work involved. Take the time to visit each facility for a complete tour and ask pointed questions both of yourself and the facility staff. Consider the following questions:
Is the facility conveniently located?
Look for a facility located close by the family to encourage regular visitations. When Dad was still alive, I did not own a car, so I also had to factor in public transit service to the neighbourhood. You could also judge the facility’s location depending on proximity to Mom/Dad’s doctor’s office as well as shopping, parks, walking trails and/or a coffee shop (as possible activities for you and your parent to enjoy together). On this same subject, evaluate the location within the location … will Mom or Dad have a sunny window in the room or be close to the nurse’s station? With senior’s rooms being smaller than a normal residence, ensure as well that there is no wasted space (e.g. pillars or hallways). Can facility maintenance staff add a shelf or two or extra storage?
Is the property clean and well-maintained?
No matter what time of year you visit, you can tell a lot from the facility’s exterior appearance. In the winter, are the sidewalks cleared of ice and snow? In the summer, is the grass neatly trimmed? Are there any potentially dangerous cracks in the sidewalks? Is the interior and exterior of the property well-lit? Are any lightbulbs burnt out and need replacing? When touring a long-term care centre, stray a bit off the beaten path … peer into closets and stairwells to see if these areas are regularly swept and mopped.
Can a senior be transferred within the same facility to receive specialized assistance?
This, I consider, to be of utmost importance. With such continuing care being available under the same roof, additional necessary moves can be reduced. Limiting those moves reduces your own increased stress as well as raised anxiety from a senior who may not completely understand the entire experience.
How safe is the facility?
Determine the date of the latest building inspection and the most recent elevator servicing. What is the building’s emergency evacuation procedure? While staff at Dad’s secured unit explained that they could clear residents out of the building if need be, I now question how they could have managed getting weak and confused seniors – many of them in wheelchairs – out down the back stairs if the elevator failed. Does the facility have emergency lighting in case of a power outage? Is there a lock-up area for both medications and toxic chemicals?
What is offered for meals?
Food, undoubtedly, contributes to one’s quality of life. Investigate the menu. How is food prepared and served? Is the menu routinely varied? Can dietary restrictions be accommodated? Are menu items healthy choices? Can you sample some of the food for yourself?
While there is a great deal to consider when choosing a long-term care facility for Mom/Dad (and imminently placing him/her), step slowly and cautiously. In doing so, you will make a better decision for both you and your parent.
Caregivers need others to help carry the ball
Down, set, hut! In a game of football, the ball is snapped from a centre to the quarterback. The quarterback will have mere seconds to execute a play – whether running the ball himself, handing it off or passing to a receiver. The quarterback’s success, along with his level of play, will, of course, affect the game’s outcome, but he cannot win completely independently – he will have an entire team who will also contribute.
This “team” concept is of utmost importance as well to caregivers who will encounter many challenges when trying to manage the needs of a senior. Often, caregivers mistakenly believe that they can do everything themselves. Many caregiving resources exist at local, provincial and national levels and are well-able to assist those in need, but you will have to call and ask for their help. From my own co-caregiving experience, here a few ideas of where you can pass the ball:
Your immediate family is certainly the most obvious support. No matter where a brother or sister lives, there are things that can be done – even at a distance. Mind you, there are various types of distance – geographical distance can be dealt with; however, emotional distance or discomfort with the situation are completely different matters. Talk frankly with your relatives; ask who is willing to do what and how much? Siblings living elsewhere and not being directly involved may assume that everything is “just fine” and not completely understand what a primary caregiver is going through. Explain your situation and ask them for help.
Your parent’s friends or neighbours
If your parent(s) has/have relocated, contact their friends and/or neighbours to serve as watchdogs. Exchange phone numbers and e-mail addresses, encourage regular communication, and even supply the neighbours an emergency key to your parent’s home – just in case. A visiting neighbour can alert you about both your parent’s health and the state of the home – if housecleaning hasn’t been done in some time, this can be a red flag for you.
This lengthy list includes doctors, nurses, physiotherapists, occupational therapists, social workers, pharmacists and professional caregivers. These individuals have chosen to dedicate their lives to helping others. Their jobs focus on ensuring better health and providing quality of life – by all means, work with them.
Whether Mom / Dad needs to update their will or you have a Guardianship or Trusteeship question, legal counsel can best advise you.
A banker / financial planner
Dealing with financial matters (even the simpler things like the paying of Mom/Dad’s regular bills) can become complicated. A knowledgeable professional can answer your questions about your parent’s savings and investments.
A real estate agent
Seniors don’t always like the idea of moving away from their homes into long-term care, but it often becomes necessary. When the day comes, a real estate agent can help caregivers to list, price, show, and sell a parent’s home.
Your parent’s hairstylist / barber
Does your mother routinely have her hair coloured or does your father still get a bi-weekly buzz cut? A hairstylist or barber (or any staff who regularly expect and work with your parent(s)) can tip you off if they miss a number of appointments in succession. Similarly, members of a community group or church congregation might also notice if your parent does not attend for a couple of consecutive meetings. A letter carrier may be able to advise you if your parent’s mail goes undeliverable for a few days.
Individuals are not the only ones who can effectively play on your own caregiving team. Consider the following groups as well:
Whether you live on one side of this country or the other, you can reach out The Canadian Caregiver Coalition for information, encouragement, and advocacy. National programs, on-line caregiving tools, and many recommended resources are all listed on their website.
The Canadian Homecare Association plays two important roles: they will provide care for aging seniors and allow respite time away for family caregivers.
If you are tired and frustrated with looking for suitable help, then register for this service and qualified caregivers from across the country can contact you instead! Job-seeking caregivers can provide resumes, state their professional experience, and even provide results of a criminal record check. Browse through this information and make your choice.
Know that these ideas are just the beginning. Try “Google searching” “caregiving help in [your location]” to find many more options. You may be surprised at what – and how much – is available! Identifying and involving these additional players will benefit both you and your loved one. The message here is that, as a caregiver, don’t have others just sit idly on the sidelines. Play quarterback. Huddle up with your team, call the next play, and take the snap from your centre. If your running back or wide receiver is open, give him the caregiving ball to carry by all means. These other players on your caregiving team may well gain much more yardage than you.
This is Morse Code for “caregiving”: -.-. .- .-. . –. .. …- .. -. –.
If you didn’t know how to break the code, you’d be left scratching your head as to what the dots and dashes mean. Another code, of sorts, exists behind the term “caregiving” itself as not everybody can completely explain this role or even properly define the word. This is perhaps because there are various types and levels of caregivers and many people don’t readily identify themselves as caregivers at all!
When one hears the term, “caregiver”, the picture that often springs to mind first is that of an adult child caring for an aging parent– perhaps a son or daughter pushing Mom or Dad around in a wheelchair.
With about 8.1 million individuals, or 28% of Canadians aged 15 years and older, currently providing care to a family member or friend with a long-term health condition, disability or aging needs1, it’s easy to understand why this common mental image exists. This is, in fact, my own experience as I helped and supported both my mother and father before they passed away – a job which could have been far more burdensome without my two sisters. And with our country’s aging population, more and more family members will be certainly assuming numerous responsibilities for their own parents.
However, a caregiver can really be anybody providing assistance to another individual – whether this be a friend, partner or spouse.
Care recipients don’t have to be old– parents of disabled children are also considered caregivers. And caregivers don’t have to even be human! A growing number of senior’s residences are recognizing the value of family pets as caregivers through pet therapy programs – a dog or cat visiting a senior can serve to calm, provide enjoyment and increase the quality of life for these people.
Confusion can also exist between the terms “informal caregiver” and “formal caregiver.” The first group are, typically, untrained and unpaid family members. They may not have any related experience (e.g. healthcare, legal, social work or finance) and can be bewildered and overwhelmed with the job. “Formal” caregivers are, on the other hand, trained and paid professionals (doctors, nurses, social workers, physiotherapists, etc.). They will often play key roles on one’s own caregiving team and have a much better idea of medical conditions, how to administer the best care possible and how better to navigate the often-puzzling “system” to find required assistance.
Another unclear term can be the “sandwich generation caregiver”. This person is caught in the middle between their own younger children and aging parents. Obviously, this will demand more of a caregiver’s time and energy, so a sandwich generation caregiver should be much more mindful of his/her amount of work conducted for both sides of his/her family so as to avoid excessive stress. Taking this analogy further, there is also the “club sandwich generation caregiver”— an individual with young children, aging parents and grandparents.
Further misconceptions may occur when considering the type of care provided (which can take many different forms). Caregivers can provide hands-on care (e.g. bathing, clothing, medication delivery, etc.); however, this physical assistance may be best left to properly trained and/or experienced healthcare workers who will know the best procedures. Trying to lift, transfer, bathe or clothe a senior independently if you are not sure of the proper methods and may not be completely comfortable with doing so can prove to be dangerous (for both the caregiver and the care recipient). Other care options can include visiting a senior to play cards, driving a senior to a day program, having bank signing authority granted and paying a senior’s bills, helping with house cleaning, separating prescription pills into daily dispensers, helping a senior eat a meal, serving as a Guardian or Trustee and so on. Two aspects of my own caregiving role with my father before he passed away were accompanying him on regular walks to help increase his fitness and flexibility and reading to him in hopes of keeping his mind active for as long possible. Help provided can come on either a large or small scale. Whatever the caregiver can comfortably do can be greatly appreciated.
I believe this could be for many reasons: unfamiliarity with the term, shame, embarrassment, denial or refusal to accept outside help (this is my parent and therefore he/she is my responsibility …) Not identifying yourself as a caregiver, however, may lead to isolation (on your part and others who may be caregivers themselves who don’t know where to turn). In fact, the more often you speak up as a caregiver, the more likely it will be for others to listen and provide answers for you – whether this would be developing a new respite program in your area so you can take a much-needed break; recommending a specific type of grab bar to install in your care recipient’s bathroom to make it safer or lobbying politicians for increased caregiving funding and support at local, provincial and national levels.
With time, patience, knowledge and skill, a code can be broken. Unlocking the mystery behind caregiving is one of the first important steps to better understanding your forthcoming or newly acquired role and better understanding how you can best provide help.
Hard as it may seem to imagine the charismatic Churchill ever stumbling when speaking; however, we are all at risk of saying something we later regret. Often, this is as a result of answering too quickly, misunderstanding the situation or overlooking the repercussions. Alternatively, we may simply find silence awkward and would rather say something rather than nothing (so as to fill otherwise dead air). We mean well– however, words come out wrong when we speak hastily.
If you know a caregiver of someone with Alzheimer’s disease, be especially cautious with what you say and how you say it.
From my own experience with this condition (Alzheimer’s stole my father’s memories from him before he passed away), I found that others did not always completely understand my role and/or what I was going through and did not always offer what might not considered to be the most well-thought out advice. Fair enough – if you are not a caregiver, or have not had any experience with Alzheimer’s disease, it may be difficult to realistically understand what someone in this position is going through and/or the outcomes of the condition. But please do yourself and the caregiver a favour and think before you speak – a caregiver can be flustered, distraught and/or overwhelmed with daily responsibilities and cannot always give others the benefit of the doubt or will ask to clarify meaning. Have you ever been distracted and misinterpreted something which was said?
Please steer clear from these select phrases
You must feel alone. (OUCH!)
Caregivers may feel like they are adrift at sea in a leaky lifeboat; however, they are never truly on their own. With an estimated 500,000 Canadians having Alzheimer’s disease or a related dementia (source: The Alzheimer’s Society Toronto), you won’t have to look too far to find someone else affected by the condition. Sharing with and learning from another caregiver in a similar situation can be both therapeutic and beneficial. Additionally, there are many programs and services available across the country for Alzheimer’s caregivers. Instead of leaving the caregiver floating aimlessly, hand him/her a life jacket and recommend contacting The Alzheimer’s Society of Canada or the closest provincial chapter of The Alzheimer’s Society.
Your mother / father is wrong. (OUCH!)
Mom / Dad may think that today is Tuesday rather than Saturday (or mistakenly recognize you as a childhood friend from many years ago), but, trust me, pointing out such errors is futile. You may likely hear the very same statement a few minutes later (I can’t tell you how many times I heard the same stories from Dad but after he lost his ability to speak, I was grateful to have heard his voice for as long as I did). Arguing with someone with an Alzheimer’s patient is also embarrassing and maddening for someone in the early stages of dementia, as he/she may likely realize that his/her memory is starting to slip. It’s far better to smile and accept what the senior has said as truth – remember that it is Alzheimer’s disease which confuses the facts.
Things aren’t going to get better. (OUCH!)
With scientists continuing to toil in medical labs, I remain optimistic that the day may well come when a cure for Alzheimer’s disease will finally be found. While this may not be in either the senior’s or the caregiver’s lives, this pessimistic outlook will not be appreciated.
Things are going to get better. (OUCH!)
Conversely, you cannot realistically make such a lofty promise. No one knows when a cure will be found and, in the meantime, a caregiver will realize that this may well come too late for his/her loved one.
Finding things to do with your mother / father must be tough. (OUCH!)
Alzheimer’s patients will lose their memories but can still be engaged in plenty of other activities. I always liked to walk with Dad – a pastime he always enjoyed. In addition to being something we could do jointly, walking kept Dad limber too (another plus!). Winter walks were inside Dad’s care home while summer walks were outside. I also remember when my family took Dad out to a local ski hill. While this paled in comparison to the mountain slopes he once carved his way down, Dad was very confident on his skis!
Being a caregiver has to be difficult. (OUCH!)
Yes, caregiving can be overwhelming. Try balancing the needs of a senior with Alzheimer’s disease with your own life. Caregiving can easily become a secondary full-time job. Watching my father’s decline (and being unable to stop it) tested me to the very limits. Caregiver obstacles exist on many levels, but it may be better not to emphasize these– a caregiver does not have to be reminded of the demanding times.
I know how you feel. (OUCH!)
This nothing-short-of-cringe-worthy and hollow phrase has turned into a pet peeve of mine. It’s such an easy thing to say – you may sincerely believe that you are thinking of the caregiver, but the comment shows little thought and compassion instead. Emotions can run rampant and the caregiver may be feeling everything from joy (that Mom/Dad acknowledged a visit) to deep sadness and regret (over an impending passing of a loved one) in a single day. Have you experienced the same ride as a caregiver? If not, resist saying “I know how you feel” as it is, as best, a reflex action.
When talking with an Alzheimer’s caregiver, you can ensure better results by accentuating the positive or making a concrete offer instead. Try saying something like:
- “Your mother/father would appreciate all the help you are providing”
- “You are doing a great job with advocating for your parent”
- “Other caregivers could learn a great deal from you”
- “I understand how this can be a difficult time for you”
- “Could I pick you up anything at the grocery store tomorrow and save you the trip?”
Finally, take a lesson from Winston Churchill. Pause and maybe pour a little gravy on those words before you speak them – this can help make them taste better if you have to eat them.
Photo credit: Some rights reserved by Alzheimer’s Association – Greater Illinois
Happy New Year!
‘Tis the time for many of us to look ahead and plan annual goals so as to work, live, feel and/or look better. With diligence, these resolutions can bear fruit. Caregivers are certainly among those individuals who can greatly benefit by setting out (and fulfilling) goals for themselves. These don’t have to be grand or costly – in fact, the smaller promises are often more realistic and far easier to achieve. As a prospective, new or current caregiver, please consider any or all of the following suggestions to make this year a little easier and a little better than last:
1. Be Human
We strive for perfection. We fear mistakes. We try to juggle so many responsibilities that we have to move increasingly faster to keep them in the air. As caregivers, we get so used to trying to do it all that we forget that we’re human and have limitations. We can’t will the 25th hour of the day into existence. So for this New Year, be human, not perfect. Make a list of what is essential and what isn’t. Making cupcakes for your son’s soccer team is an incredible loving gesture but picking up a cake from the store would be just as thoughtful and a lot less time consuming. Remember that caregiving is temporary—if being super-human works for you, you can return to doing it later. But for today, be flexible with what you can and cannot do.
2. List Your Loved One’s Treatments and Medications
Depending on your caree’s medical condition, this may take some doing to get organized and to put this together; however, the work will be well worth it! Include your caree’s current medications, dosages (have these been increased or decreased?), side effects noted and reason(s) for taking. Don’t forget vitamins and/or over-the-counter medications you can pick up at the drug store and any allergies your loved one may have. While you’re at it, record dates of any surgeries or major dental work for your parent. Doctors frequently ask for this type of patient information, so it can be helpful to have your list prepared and ready. Why not print out two copies of the list – one for home and one to carry in your car?
The Internet is a vast library containing information on everything from the Tyrannosaurus Rex to technology, so why not take advantage of it? As an example, I’ve just searched the word “Caregiver” through Google. In mere seconds, I was presented with over seven million “hits” (or information relevant to this subject matter). Caregivers are not bound by regular business hours when using the Internet either and can surf for information at their convenience. If you really don’t have the time (or desire) to spend time on-line, enlist another family member or friend to conduct research for you. One word of advice however … what you may find on-line may not be completely factual. I make it a habit to check my sources (do they have professional designations or related caregiving experience?).
4. Seek Support from Strangers
That’s right—total strangers. Hopefully your friends and family have been good about checking in on you but we know that isn’t always the case for caregivers. And there are some things you just rather not share with someone who knows you and your caree. In fact, this is a feeling shared by many of us! Sorry, but we’d rather not share the intimacies and frustrations of caregiving with the people in our circle. So in 2014, move totally outside your circle by sharing in an online or local support group. The level of anonymity these groups allows for complete honesty and the shared experience guarantees understanding. Perhaps most importantly a support group meeting allows caregivers important respite time away from the challenges they face. When utilized effectively, support groups allow participants an opportunity to deal with mixed and/or negative emotions (including frustration, anger and regret). Support groups also provide time away for a caregiver. This so-called “respite time”, taken in whatever form, is vital to allow for time to recharge. To find caregiving support groups, try contacting local hospitals and/or senior’s centres. If nothing is offered, ask for recommendations or consider starting a caregiving support group yourself!
5. Learn More About Your Loved One’s Health Condition
How aware are you about your caree’s disorder? Do you know what to look for with possible side effects? Understand the medication prescription? Ask your loved one’s doctor, read books/watch videos, utilize community resources and/or quiz other caregivers who have been through a similar situation. Keep asking until you completely understand – you and your loved one both deserve to know.
‘Twas the night before Christmas when all through the house, not a creature was stirring – not even a mouse
It was a tradition for Dad to share a rendition of this seasonal poem with our family. My two sisters and I would gather around and hang on every word he uttered (I can still remember his soothing baritone voice).
Then things changed.
Dad became affected with Alzheimer’s disease. Over the course of time, Dad lost his memory and his ability to speak. He became unable to continually share those lyrics with our family and may not have recognized the poem at all!
Undeniably, such family traditions, whether it’s Mom cooking the Christmas turkey, Dad stringing the lights outside the house or the children helping to choose and decorate the tree, play an important part in the holidays. Due to your aging loved one’s reduced ability to participate however, these traditions may have to be re-evaluated. Old traditions don’t have to be completely dropped. I’m simply suggesting these traditions be revised when family members become elder caregivers. It is more important who you spend your Christmas with than what you do with them.
Here are just a few ideas:
Go out for Christmas dinner
Consult with your family as to preferred restaurant choices and then call to make a reservation. This still allows for plenty of quality family time to talk through the evening but saves you the clean-up afterwards! Why not look for a restaurant with wheelchair access and bring Mom/Dad along? Another related idea might be to rotate Christmas dinner and have different family members host the event. Doing this means that one person doesn’t bear the brunt of the entire meal preparation him/herself. While my family’s Christmas dinner is now served at my sister’s home, we share the work load– I bring the pumpkin pies and ice cream as well as help with the dishes after our meal.
Donate to a worthy cause
You certainly don’t have to break the bank, but giving to a charitable association can become a rewarding tradition (even more so if you donate to a cause which Mom or Dad believe in). Another benefit is that charitable donations are often tax-deductible. If you can’t give money, give your time and/or energy. Over the past number of years since my parents have passed away, I have volunteered to drive for Santa’s Anonymous (an association which collects toys for needy children but requires individuals to deliver them). By doing this routinely, I have been reminded that by helping out someone less fortunate, you, in turn, can help yourself.
Try a new family activity
Although Mom or Dad may be unable to join you, suggest another family outing. Bundle up and head to the toboggan hill, go skating, strap on some snowshoes or cross-country skis or go for a family walk with the dog (stop by the park and build a snowman!). If something warmer strikes your fancy instead, watch a seasonal movie at the theatre, light a fire at home and sing carols or pop some popcorn and make popcorn chains for your tree.
Create a photo seasonal ornament
If Mom or Dad remains bed-bound in a care facility (or have passed away), hang a picture of them from the tree. You can find a small picture frame at a craft or photography store, insert the photo and dress it up festively however you like. By placing this on a tree branch, the family can still know that Mom / Dad is part of the day.
Incorporate some of the old
Someone else may cook the turkey, but you can still use Mom’s dressing recipe. If you have always set out the fine china for dinner, continue to do so. Mail out the traditional family Christmas letter to distant friends. Hang familiar Christmas ornaments from the tree. Allow youngsters to break open their Christmas stockings before breakfast. Carry on with placing received Christmas cards on the living room bookshelf or the fireplace mantle.
Yes, the holiday season focuses on celebrating with family, sipping eggnog and exchanging gifts with those you love, things cannot always be the way they have been (especially for family caregivers).
Look back by all means, but also look ahead.
All photos credited to dfuster74
To celebrate National Family Caregiver Month, we’re giving away some great resources for caregivers!
Rick Lauber has generously donated a signed copy of his book to giveaway to our community and we have created a beautiful surprise giveaway to all contestants.
From Nov. 5, 2013 to Nov. 14, 2013 you can enter for a chance to win a free copy of The Caregiver’s Guide for Canadians (but it’s a guide for everyone!) AND all winners will receive a special gift for participating!
What should you do when your mother or father grows old? It’s the natural course of life, but so many children of aging parents are caught unprepared. When a parent’s physical or mental health begins to fail, an adult child can be left scrambling to help, balance his or her time, and even just cope.
The Caregiver’s Guide for Canadians will provide you with valuable advice to help you provide good eldercare while balancing all the demands on your time. It provides practical, realistic guidance; encouragement and insights to help you care for elders in need.
Contest information and rules
- One entry per person please!
- You are providing your email address so we may contact you for details on where to send your prize and giving us your name so we can personally address you!
- Winners have two weeks to claim their prize from sent date of announcement email
- Winner and runner ups are chosen at random
- Entries will be accepted until November 14, 2013 11:59pm
- Winner will be announced: November 16, 2013
A loved one’s death can be traumatic and tragic. It can mark the end of a frequently challenging caregiving journey where family members and others will have provided help and support. Caregivers will often fondly remember what they accomplished for their loved one and share these memories with others.
What doesn’t get as much attention, however, is what caregivers do following their own time helping and supporting a loved one.
As a former co-caregiver for both of my aging parents (Mom had Parkinson’s disease and Leukemia while Dad had Alzheimer’s disease), I know now that caregiving can be a powerful teacher… I learned many new things about myself and my own capabilities. I can safely say that, by going through the trials and tribulations of caregiving, I have become a better person– more self-confident and more willing to try new things and, as a result, have accomplished much since Mom and Dad’s deaths. The most obvious example– I wrote a book, Caregiver’s Guide for Canadians.
Writing had proved to be an effective coping mechanism for me during Mom and Dad’s final years.
During my time as a caregiver, I journaled routinely to privately vent my thoughts and frustrations. A number of my stories became published content in local newspapers and magazines. With eldercare being a timely and topical issue in our country (due to maturing baby boomers), I realized that many others would become caregivers themselves (or would be currently serving as such) and these individuals would benefit from help and support themselves. Some years after Mom and Dad had gone, I sought out a book publisher, pitched the idea and was awarded a contract! What I had previously written became the platform for my book.
Looking back at what I achieved before Mom and Dad passed away has made me interested in achieving more in my life. Life is too short! I’ve long been (secretly) interested in improving my own public speaking skills so I’ve joined a local Toastmaster’s club.
After caregiving myself, I wanted to give back to caregivers still in it.
So I joined the Board of Directors of the Alberta Caregiver’s Association (ACGA). The ACGA is a province-wide organization which refers, hosts information sessions and offers a “COMPASS for the Caregiver” workshop (which emphasizes the importance of caregiver self-care and allows participants to explore diverse emotions). I have recently begun my second two-year term with them and enjoy participating, helping to steer the association, meeting other (current and former) caregivers and supporting a worthy cause.
Another adventure after caregiving?
I took up running. I began by joining a running group for pure novices. This “Learn to Run” group met regularly and provided both encouragement and inspiration. We began with the very basics – we would walk a minute and then run a minute. I chugged along and panted, but built up my stamina and am now running up to 10 km three times per week! I know I will never break any land speed records with my own running, but I have certainly felt much better from doing it!
Where you go from your own caregiving experiences will vary considerably, based on your own interests and lifestyle.
Whether you too write a book, foster stronger family relationships or land new work, remember that it is for you to keep that door open as you just never know what might come your way!