Whether you’re planning ahead or on the fly, a lucky few of us will find instructions for care in a sealed envelope just waiting to be opened in a time of need. The reality is, most of us enter the caregiving world with few guidelines as to what our parents and love ones really want and what choices are available. Needs change, opinions differ, but it makes good sense to get some groundwork done ahead of time to lighten your load in the future. Also, this is your golden opportunity to gracefully ask some of those not-so-popular questions that your parents will probably be reluctant to answer.
Apply the 75/25 rule of thumb
From what I’ve seen, more than 75% of what life delivers is predictable, plannable and hence somewhat manageable (what I’ve distilled from my daughter’s four-year business degree.) Simply put, I govern myself as if there is a less than a 25% chance of sudden not-so-nice surprise at any given time.
Using this principle, I believe that by applying some “proactive smarts” in our role as the adult children of aging parents, we have the ability to avoid most crises and manage change. Remember, planning makes perfect. Not always in the case of eldercare but it certainly makes a significant difference in minimizing disasters and costly lost time.
Does what they want match what they need?
As circumstances evolve and people age, the amount and type of support they might need begins to change. Knowing how much, or how little, help might be expected/and or available will help you to feel and be better prepared.
It’s 2:30 pm on a Tuesday and you’ve been urgently called away from the office. Your mother has fallen again. This time she was out in the garden and crashed to the ground. You rush to the local hospital to meet the ambulance and find that, while she’s not seriously injured, she has scraped her hands, knees and face badly, she’s badly shaken.
This is the third crisis and most alarming upset within a few months. What can you do for your her safety? What kind – or level – of help does she need. Can you prevent things from getting worse or is this something you’ll all have to live with if mum and dad want to remain living at home?
Aging delivers different things to different people. For some there are sudden emergenies. For others there’s a more gradual, somewhat predictable process over time. Sometimes what our elders want is not what we think they need. Our perception and their reality don’t match. But before you worry and argue yourself silly, know that individuals (read: our parents) have the right to live at risk at least until they’re deemed to be a danger to themselves and/or others. Here’s what the experts have to say about this:
Needless to say, as the adult child of an aging relative, you’ll be often faced with plenty of difficult decisions at all the wrong times in our lives. Take comfort in the fact that in many cases, there’s simply nothing that we can do to change things today. Just like the parents of teenagers, as the adult children of aging parents we’re sometimes destined to shake our heads, close our mouths and just watch and wait.
Never stop asking sooner or later you’ll be able to understand what your loved one will/would want. My take, a bit of awkwardness now will save no small amount of guesswork, angst and hard feelings in the long run.
Developing a care plan
Virtually everyone we meet today has an older person in their life they worry about. To best serve that individual’s needs, you must develop a care plan. A care plan is essentially a comprehensive list – a list that includes every type of care your loved one will require, and also looks at all those other things associated with caregiving. This involves first establishing what level of care is needed, determining the resources available, and then considering your own willingness to accept the caregiver role.
Begin with an assessment
Ideally the best method to determine what, if any, care is needed is to have a medical assessment done by a care professional, such as a physician, health nurse, occupational therapist or local home care agency. They can identify where your parent needs the most help and give you some guidance as to what to do next. This may include accessing the various care services in your area, including home care. Ask yourself whether you are physically, mentally and financially able to give the care to your parent directly, or are you more comfortable arranging for the care to be delivered? Implementing care can be difficult and may even be met by resistance from your parents, for a number of reasons. However, if care is needed, implementing it in stages may not only be the most efficient, it may also be the path of least resistance.
So that you can benchmark the current situation, ask yourself: how are self/personal care needs currently being managed on a daily basis?
Care Indicators: Activity levels and other clues
Assessing care needs is a hard and subjective task as your parent or elder is often in denial. Examining activity levels and watching out for common clues is a good place to start. Some of the first clues that an older person may need care include feelings of:
• loneliness
• deteriorating health
• poor eating habits
• calling you at work
• forgetfulness
• declining mobility
• life-altering events (e.g., death of a spouse, illness, etc.)
A good measure as to how a person is able to handle activities such as dressing, eating (handling utensils, swallowing, etc.), bathing (turning on taps, sitting/standing unsupported), toileting, personal hygiene/grooming (teeth, hair, face, hands, nail care) and transfers (getting in and out of bed, going from room to room, etc.). Are they sure and timely or are they slow and confused? Can you leave the person alone during any or all of the above tasks? Will they eat on their own? Can they manage meals on wheels? Are they able to answer the telephone? Answer the door?
Take a reality check (or to prove a point to your parents and siblings)?
Consider requesting the services of an occupational therapist to determine care levels and equipment needs. Also consider the need to access attendant care services or use home support workers.
An occupational therapist or case manager can help you to identify areas that are difficult or at risk. Depending on what you or your parent feels is important, they will check:
• physical abilities: for example, strength, coordination and balance.
• mental abilities: for example, memory, organization skills and ways of coping.
• support available to you from family, school, work and community.
• physical setup of your elder’s house and community.
• specific activities you want to do to improve your elder’s abilities.
Once you and your occupational therapist identify the problem(s) you may work with your elder to:
• learn new ways of doing things, for example dress or cook using one arm, remember things when memory is poor.
• do activities to help maintain or improve abilities: for example, increase strength and confidence.
• adapt the material or equipment: for example, the use of properly fitted wheelchairs, special bath equipment and toilet seats.
• make changes to the environment: for example, change the layout of the home or office to make it more accessible or prevent further injury.
• develop new skills, abilities and interests.
After overarching guidelines have been established that will set the “standards for care,” it’s time to move on to daily details that can ensure consistency, safety and quality of life.
Opening Discussions
This ain’t your standard business meeting (or is it?) With our rush everywhere, try-to-be-efficient worlds, we tend to forget that our parents may be schedulable within a “palm pilot” window. I hear from friends that their parents are slowing down a bit or maybe at this time of their lives they simply want to take some time to think about their options. Maybe they’re not as hard wired as we are.
Discussions with parents can pick up on a few tried and true business principles, however, if we don’t get carried away. Perhaps there is a need for a list or an agenda to stay organized. This may not be something you want to share with your parents unless they’ve been in business themselves for years but certainly a meeting, however informal must be scheduled. Nothing onerous, mind you, at the boardroom table but, while they’re well, there are official matters that need serious head space. This planning step does require a beginning, a plan and a defined path towards certain goals and it may take a period of time to move gently towards the desired results!
Consider this:
• Your elders may be scared. What lies ahead is often a frighteningly difficult, unpleasant journey that most of us would prefer to avoid if the truth were known.
• Suggestion: Be gentle and supportive as you help to move things forward.
• After a certain age, most doctor’s result in more tests, diagnosis and treatment of one condition or another and, if statistics ring true, the prescription of yet another medication with its inherent side effects (The average senior takes 11 medications each day. Source: Dr. Chris Frank, Queens Department of Medicine, Department of Geriatrics)
• Combine this with the need to travel outside on a winter day, wait in a crowded doctor’s office and spend more money at the drug store and its no surprise that mum and dad aren’t any more excited than we are about doctor’s visits.
• Suggestion: Develop a rapport with the doctor. Depending on your elder’s level of frailty, try to take them yourself whenever you can. Chat with the doctor’s secretary to find appointments with the least wait (i.e. first appointment in the morning if they’re early risers, first appointment after lunch).
At Home Task Review
Following an assessment, make a list of essential tasks that need to be performed, including: meal preparation, laundry, housekeeping (daily vs. janitorial – windows, spring cleaning), outdoor maintenance (garbage removal, lawn care, leaves, snow, eavestroughs, bush trimming), banking, shopping (groceries and personal) and general maintenance.
Consider labor-saving/assistive devices to maximize independence and safety. If you or your parents can afford it or your insurance or health plan will provide the service, think about starting regular homemaking services. Lawn and garden care, snow removal meals-on-wheels, frozen food entrees, as well as home shopping or delivery services can really help to keep people in their own homes for as long as possible.
When planning in this phase, it’s important to recognize the changing needs of our parents in their journey and the modifications that are needed quite regularly. If your parents are unable to manage alone, this part of the book is for you.
Assessing the environment
Review space needed for special equipment and compatibility of existing equipment in your home: e.g., a special bed, lift system, bathroom safety devices. Predict potential changes in health conditions and needs to help you decide whether its best to renovate, compromise or move.
Look for hazards that will increase the potential for falls and or fires. What is the person’s ability to exit the home in an emergency? Be sure they know how to access 911 or police fire and ambulance and have the instructions prominently displayed in the home. Do they hear, smell and see well enough to ensure their own safety in an emergency? Know that they are fully capable of understanding and aware of emergency procedures. Make sure they are not going to be at an above-average risk of senior fraud or neighborhood robberies because of their frailty. Are there any difficulties related to mental illness that might compromise safety?
Consider an environmental safety assessment or explore personal-alert systems and communication devices.
Safe mobility matters
Usually, sooner rather than later, your relative or friend will need a cane, crutches, walker, scooter or wheelchair. Suddenly, you’re the techy who’s in charge of buying, lugging, fixing, cleaning and making this all work for them.
Review accessibility: door width, counter heights, flooring, stairs, hand rails, light switch heights, closet/clothing access, taps, pathways/hallways clear of obstruction, and lighting. Will your home and theirs need a ramp, a stair lift or an elevator? If they begin using power equipment (scooter or power wheelchair), you’ll need to figure out what is required for “home and away” access, and plan for storage and lifting, transportation and battery recharges. Also, you’ll need to think about whether or not it’s safe for them to “drive” the equipment.
Can the same equipment be used safely inside and outside the home? Is the equipment compatible with your family vehicle? How will you transfer your parent from the house, nursing home or hospital into the car, taxi or bus?
Is there convenient access point in the building where they go for medical appointments and shopping? Will you or your parent be able to drive and park with a disabled-parking permit? Check to make sure there are not stairs that present dangerous or inaccessible barriers. Often there are wheelchair access doors but they may be hidden or difficult to find at a glance. Is there an accessible washroom? Where? Will the equipment fit in the washroom or is it used a storage room?
Cultural and religious expectations
Through decisions you’ll make, give consideration to your parents’ background, beliefs, nationality and heritage. While many elders have integrated into the Canadian lifestyle over the years, there are many others who, without family and church support, would be isolated from a communication, language, dietary and lifestyle perspective.
On the positive side, research on the impact of religious participation by aging members of our population has shown positive quality-of-life indicators, enhanced social network connections and lower levels of depression. It seems that local church congregations provide much-needed outreach to vulnerable citizens in their community and chaplaincy services in hospitals and nursing homes. Religious participation doesn’t cost much and is widely available. Did you know… Dr. Harold Koenig, a Duke University psychiatrist, found that religious elderly patients cost the health system less money than those who were less observant. In addition, religious patients reported spending just six days in hospital during the previous year, compared to 12 days among the less religious
Resources
You should review your parents’ and your own financial situation. Are funds required and available to purchase or rent equipment? To make necessary renovations? For transportation or vehicle modifications?
If appropriate, investigate funding agencies such as March of Dimes, Extended Health Insurance, Department of Veterans’ Affairs, Social Services, Assistive Devices Program, or diagnosis-specific agencies (e.g. the Multiple Sclerosis Society).
More support needed?
Governments and health experts have a seemingly endless number of definitions of home care…but all it really means to the typical Canadian is getting the help and support to be able to care for loved ones themselves.
The Internet is also a great source of information and contacts, however with the usual proviso of being aware of the source of the information. Start with reliable sites sponsored by governments or agencies and follow their links.
Homecare: know the terrain
Each province has its own way of delivering health services, with specific rules and regulations. In Ontario, for example, there are LHIN’s Community Care Access Centres (CCACs) across the province. These are government-funded, not-for-profit organizations serving as a local point of access for in-home health care, information and referral services and access to long-term placement. Similar organizations exist in other provinces. Please note however, with changes in government or when provincial budgets are tabled sometimes services change – for better or worse!
Regardless of where you live, eligibility for home care help will likely be dependent on certain criteria, such as having a valid health card number, being unable to access out-patient services, or needing one of the professional or personal support services for a condition that can be appropriately treated at home and having a home environment suitable for implementing these services.
It is important to understand what home care is and what it provides. Home care has been called “a group of services that help people receive care at home when they are ill, disabled, recovering from illness or surgery, or dying.” The goal here is to enable people with poor or deteriorating health “to live at home, often with the effect of preventing, delaying or substituting for long-term care or acute-care alternatives.”
Whether you need to have someone keep your spouse company so that you get a break, or you require comprehensive in home nursing services, you are entitled to ask for home care. In some cases, you might have the option of paying for additional services, or if you would like more hours of care than your government agency is able to provide.
Learn what you can
Knowledge is an empowering tool. Learn as much as you can about your elder’s medical condition or care needs. Ask questions and share ideas with family members and health professionals. There is a wealth of information about this and caregiving to be found within libraries, magazines, and established organizations and of course, on the Internet. Very often caregivers have neither the knowledge nor patience to go online. Ask a friend or relative to search for you.
Hold team meetings
If you are fortunate enough to have developed a support network of family and friends, now is a good time to have a team meeting. If possible, the care recipient should be included in the decision-making. Both the needs of the patient and the caregiver have to be discussed. Home care might not be able to provide as many hours as you would like. Relatives and friends are often willing, but hesitant, to offer assistance because they don’t know what to do. However, if tasks are discussed and delegated on an individual basis, a win/win situation is created – the caregiver receives the help she needs and the support team feels useful providing it.
Initially, members of this team might save you the time and effort of tracking down information you need. For example, is there a barber/hairdresser who does house calls? Is there a volunteer-based service to provide respite care? Can you access Meals on Wheels or another food service? If the caregiver doesn’t have a car, is volunteer transportation (for medical appointments) available through a community agency? Would the in-home services of an occupational therapist, speech therapist or physiotherapist be available if required?
When it’s time to make some tough decisions
The time has come to make difficult decisions about our elders, and we need their blessing. Expect resistance. Here are some ideas about approach.
Suggestion: Practice patience (perhaps its time you took up mediation or yoga to reduce your stress level). Be realistic. Don’t expect a decision today. This process, especially in times of good health and wellness or when early health management decisions are on the horizon, may be frustratingly slow for us.
Slow down. Even if you’re ahead of them, decision-making and laying out options may need to be broken up into baby steps. (A series of discussions if you have the luxury of time.) Deal with health care wishes. Consider assets. Discuss home and long-term care options. Decide which member of the family (i.e., which child) is going to take the lead.
Remember:
1) This isn’t about what your elders are going to leave you and your siblings, it’s arranging for their care and the quality of their later life.
2) Draw up a road map now to save yourself and them, long-term trauma. Even if plans have to change at least you’ve got markers going in the right direction that’ll guide your way.
3) Maintain dignity at all cost. Yours and theirs.
4) Seek outside advice whenever possible. There’s often support available through provincial health ministries and not-for-profit associations. Alternatively if you can afford it, there are legal, medical and legal experts who can be hired on assignment or by the hour. Your goal: To have some of the tricky questions asked by someone else and the options outlined in a non-judgmental, choice focused way.
Know you’re not alone
With a little time and good advice, you can begin by equipping yourself with as much knowledge as possible, gathering information on your parent’s abilities and disabilities, their needs (both present and future) and what services are available to help you both.
An often-neglected part of planning is determining exactly where and how you fit in. You need to understand your strengths and weaknesses and identify what you will need to be successful in your role (including the help of family, friends, neighbors and community agencies).
Equally important to the responsibilities you have to your loved one are your “rights” as the caregiver. At the onset you are filled with hope, have ideals, energy and the motivation to make things happen. You may be able to survive on less sleep, reduced leisure time, leaves of absences from work, etc., but this will not be sustainable.
Balance your responsibilities
Thinking that you can do it all can lead to exhaustion, stress and burnout. Although burnout may not be evident until up to six to 18 months, there are early warning signs. Perhaps you’re not sleeping well. You might be experiencing headaches and lingering colds and social withdrawal. Caregiving by its nature is not something that can be added on top of your daily cycle of activity in a neat package. It must be integrated with many other responsibilities. The key to surviving lies in finding the balance between the roles and responsibilities of caregiving and other important activities.
Never underestimate the need for caregiver relief or respite. Investigate relief services or respite care, look for support groups and develop your own coping skills. Be aware that there may be waiting lists for services/facilities.
To make home care really work, it is vital to research and prepare a care plan. Identify one family member as the coordinator of the care plan – it will help things to run more smoothly. By planning ahead, you can avoid worry, guilt and uncertainty and make the home care experience a more positive and rewarding one for all involved.
Now you have accepted the responsibility of caring for a loved one. Are you prepared?
Fast facts
• For elderly men, their wives have traditionally been the primary source of support and care.
• Men tend to marry younger women and women have longer life expectancies.
• Wives often outlive their husbands and, in the process, have often cared for their husbands.
• By the time women need assistance, their husbands have died and they must rely on help from their children, primarily daughters or daughters-in-law.
• Changes in family size over time have also meant that there are fewer children to provide help to a frail mother.
• Often, the responsibility for caregiving tends to fall on one child. To help understand the complexities of caregiving, it is useful to be aware of the main phases that many caregivers experience.
