Category: Blog

When it comes to caring for aging loved ones, for most, there are a myriad of very stressful discussions and decisions that seem to involve a trade-off between safety and quality of life. Typically, the children or spouse falls on the safety side, while the loved one with the health issues, falls on the quality of life side.

The “Right” Answer

One of the key sources of the stress these decisions generate is the idea that there is a “right” answer, if we can only find it. In the vast majority of situations, however, there is no “right” answer, just the trade-offs different options present. Reframing these decisions as trade-offs, and recognizing that different people will credibly see things differently, is key to prioritizing and moving forward.

Almost all the families I work with are trying to figure out how to help their aging parents deal with similar decisions:

• Should our parents get on a plane to go to Florida or Arizona this winter where Covid-19 vaccination rates and controls are much lower than Ontario; or stay at home bored, far less social and afraid to go out on the icy sidewalks?
• Should we move to a condo or retirement facility; or stay in the home and outfit it to meet the needs of aging?
• Should we get professional caregivers or try to have family provide what is needed?
• Should the caregivers visit for a few hours each day or do we get live-in care?
• Should we use a firm to help manage the caregivers and the requirements of being an employer; or likely pay less and hire privately and manage the care team ourselves?
• How hard do I push my parent to eat and drink what they should versus what they want?

Having Tough Discussions Using Patience and Consideration

Discussing these issues within a family can be tough, but needs to be done. It may be helpful to consider the following before promoting your point of view too adamantly:

1. If you need to be persistent because the risks or concerns are very real and very serious, focus on: i) reducing the risk of falls; ii) curbing behaviours that put more than just your loved one at risk; iii) paying attention to medication adherence; and iv) making decisions now for things that will be needed once your loved one may not be able to make the decision themselves. Everyone benefits from getting their “legal” house in order sooner than later, but keep in mind that it often takes many months to organize – so be patient.
2. People rarely change because you ask them or tell them to – especially those who have already accomplished so much in life doing it “their way”. These individuals typically need to get there themselves – accelerated by some well meaning pressure or, unfortunately, a dangerous event. They rarely make changes until they’re ready.

Finding A Way To Respect Choices

For many, as they age, quality of life, dignity and independence outweigh playing it safe. If you’re 70 or 80 or 90, especially given how Covid-19 has affected everyone’s quality of life, what do you think you would prioritize? If there is one thing that Covid-19 has revealed to me, it is that everyone, every family, every generation, has a different perspective on the level of risk they are prepared to take with their health. We may not agree with them, but we must find a way to respect their choices. Families are made out of well meaning people, doing the best they can to make tough decisions. So next time you find yourself arguing with your parent or sibling about making “the right decision”, remember to focus on the trade-offs not the right answer, and prioritize the things they value most.

We all have unique family dynamics. When one of our loved ones needs a  caregiver, and multiple family members are involved in the process, these unique  dynamics can make managing care day to day very challenging. 

Assessing Your Care Situation

Every care situation is unique as well, and there is rarely a perfect care solution.  Families are making decisions between imperfect options which always includes  trade-offs: do they need 24 hour awake or live-in care; overnight, full daytime  care or just a visit for the afternoons? Would a facility be better than home given  the care needs? How hard do you push if your relative resists care but really  needs it, – how many trips to the hospital after a fall before you insist they have  home care? 

In many cases, Power of Attorney for Property and Personal Care are with different family members which means one decides on care and another  decides whether to pay for it or not – this can be challenging to manage.

Another, often more serious complication, is that one or more of the family  members helping may have cognitive, emotional or physical difficulties as well,  which can have significant impact on managing care needs.

Needing care also bring’s forward financial concerns, how to share  responsibilities among family members, disagreements on what is best for the  person needing care, and different perspectives on whether the caregivers are a  good “fit”.

Reducing The Risk of Family Dynamics in Caregiving

As a hands on owner of a caregiving business, helping to manage family  dynamics is critical to what we do, particularly when care is starting or when  there are crises that must be dealt with. One of the key benefits of working with  an owner operated firm is that the owner is fully involved in managing the care, as well as finding ways to work productively with all family members. There is  no answering service, there is the owner and his key staff who can be reached  24/7. 

There are a number of things you can, however, to reduce the risk that family  dynamics complicate the care plan: 

1. Talk with your care provider about the types of decisions that are typically  needed throughout the caregiving process so the family can discuss them  up front. Waiting until the next crisis means making decisions under  pressure which few of us respond well to:

•  Is the home they live in appropriate for the future if mobility or cognitive issues become serious? If not, what are their wishes and are they affordable.
• If care is needed 24/7, can family provide some of that care? Or, is the expectation to hire professional caregivers, and how will it be paid for?
• How will supplies, food and household needs be managed?

2. Discuss with your loved one what their wishes are for care, treatment, and related financial issues so that when the time comes, and they may not be  able to share their wishes, you and your family only need to agree on what  your loved one wanted, not what each other thinks is best.

3. Make clear who the POAs are and what process will be used to make decisions that affect care and finances if there are disagreements between  family members. Make sure there is a Living Will and a decision on a Do Not Resuscitate order. 

4. Given any physical, cognitive, emotional or time limitations that family  members may have, agree upfront who is involved in what parts of the  care process.

5. Develop a daily care journal to track how each day is going to learn about  your loved one’s needs and to have an objective record of what actually goes on when family isn’t around. Clients receiving care often behave  differently when they are alone or with a caregiver, than they do when they are with family. 

Providing care for a loved one is a serious undertaking with very unique  needs for each situation. Making sure you ask the right questions now and  have a plan in place with your family can help ease the transition to care  for your loved ones and help manage any challenging family dynamics.

This post was originally featured in the September 2021 issue of Post City Magazine

Full-time care at home is costly, and there is no question that hiring privately, managing the caregivers and schedule yourself, will save money. It is often the best choice if you know the caregiver or care team well, or they come highly recommended by someone you trust. If your loved one’s needs are simple and not expected to change anytime soon, finding a caregiver yourself may be a good solution. You may already have someone previously focused on household needs, but you need them now to help with care needs, and because they have worked with you for years, it makes perfect sense to keep working with them as long as the needs don’t exceed their skills and training. Dementia or memory issues, and in particular when combined with mobility concerns, can lead to serious risks. As long as your current caregivers are able to handle these issues, managing it within the family can be a more affordable solution.

Some care situations however, may be too complicated to manage yourself. When dementia or serious mobility or health challenges exist, managing staff and the changing needs of your loved one, 24 hours a day, makes having a specialist firm of great value. Dementia can lead to exit seeking, aggressive behaviour, confusion and other manifestations that can be very risky and challenging for the untrained, and if not handled well the situation may be exacerbated. Firms who specialize in this type of care, bring very important value to help you and your family navigate these difficult circumstances:

1. In most cases, the caregivers have worked with the firm for years and they have a good sense of whether they will fit with your loved one. Firms fully vet and reference check each caregiver and will manage all payroll needs and deductions. Staff will be insured and bonded.

2. A daily journal can be designed specifically for your unique situation, which the staff complete and which is reviewed daily so any concerns can be rapidly assessed, shared, and managed. When there is a team of caregivers involved, ensuring they share information with each other, the firm, and family is critical.

3. If there is ever a concern about a caregiver, or your loved one’s needs change, or if they simply don’t respond well to the caregiver any longer, they can be replaced and the transition managed to minimize stress and confusion.

4.  With COVID-19, if the client or caregiver is knowingly exposed or has symptoms, quarantine requirements may mean a temporary and immediate change of staff – a good firm can handle this quickly. You will also get access to all PPE for normal care as well as what is needed if infection is present to allow for care to continue in the safest possible way.

5. Care may also include the need for Occupational or Physical Therapists, Geriatric Psychiatrists or other specialists. An experienced firm can help source and organize these elements of care as well as other needed appointments which a good firm handles seamlessly.

Knowing your loved one is well cared for provides great peace of mind. Knowing your care provider can adjust fast and professionally as circumstances change, keep your loved one safe, and help maintain a high quality of life for them, makes all the difference.

Bringing someone into your home to provide caregiving, particularly for live-in situations, is a very big deal. An outstanding person makes all the difference on so many levels. The wrong people, at best lead to great frustration and constant change, and at worst, although rare, a harmful situation. 

Finding The Right Caregiver

Professional caregivers need to be well vetted and trustworthy, as well as being a great fit for you or your loved one. They must be police screened. Their references must be checked – and not just to see that they worked where they said they did – but, were they good? If the care that they are providing includes personal care, mobility assistance or caring for someone with dementia or other mental illnesses, you need to be very comfortable that they have the proper training and experience. Are they insured through the firm? Are they bonded? Assuming they have all of this, only now do you get to ask the question: “are they a good fit for our home and our needs?”

Finding the Right Caregiving Agency Can Help

Using a professional firm to provide the caregiver or PSW should always come with those assurances. A good firm won’t just put a new staff member or recent PSW graduate with a high need or live-in client. They won’t just assume that because their resume says they were a nurse in another country that they are right for your needs. Many of these foreign nurses are excellent, but not all. A firm will begin by employing them for shorter shifts, working for clients with simpler needs. After they have proven themselves, determined though direct feedback from the clients, they can be considered for the more complicated situations, longer shifts or live-in assignments. 

It is this process the maximizes the likelihood that in a very short period of time you will find yourself with a wonderful caregiver who stays with you for as long as your needs determine. Skipping steps often leads to making numerous changes in caregivers over time. There are few things more stressful for a senior needing care than a constant stream of different caregivers through your house. 

If you are looking to hire privately, bypassing the controls of a professional firm, it’s even more critical that you do the due diligence to ensure they are vetted and trustworthy.

Why do our loved ones resist our efforts to help them stay safe? Every time the phone rings at a strange hour, we wonder if they are ok.

Wouldn’t you resist and fight too?

“Dad won’t use his walker even though he keeps falling.” 

“Mom keeps getting angry because dad keeps forgetting things.” 

“My wife isn’t eating enough.” 

“My husband shouldn’t drive anymore.”

Why do our loved ones resist our efforts to help them stay safe? It is so frustrating to see them take so many unnecessary risks. They seem so defensive. What are they defending?

Dignity, Identity and Independence

Why won’t they do what is so obviously in their best interest? What are they protecting?

They are protecting their dignity, identity, and independence. As family, our challenge is to help them stay safe, while respecting how hard it is to go through this phase of life. Think about the challenges your loved one is experiencing – with mobility or incontinence for example – and how that threatens their dignity. Understand how that contributes to their resistance to what others think is best for them. Imagine if age or illness eroded your sense of self. You worked hard and sacrificed to be the person you are. As you age, however, a gap forms between that identity and your physical and cognitive ability to maintain that identity. We all resist that gap.

How Can We Help Seniors Live with Dignity and Independence?

From the day we’re born we strive for independence. We raise our children to be independent and consider it a sign of our success as parents. We become adults, and after 80 or 90 years most of us become a little dependent (especially during COVID) – on our family – and we often don’t like it.

I see these dynamics with almost every client.

Unfortunately, the most frequent event that precedes a call to us at Caregiver Services Ltd. is a fall: a loved one forgets to use their walker, refuses help in the bathroom, or gets up alone in the middle of the night. It is impossible to prevent all falls, but there are ways to make it more likely they will act more safely:

1. Take it one day at a time.

Focusing on everything that can go wrong never ends and overwhelms. Do what you can to help, when you can.

2. Appreciate your loved one’s need for dignity, identity and independence.

Seek to understand what they are experiencing. Feeling heard makes a big difference in accepting help from others.

3. Recognize that as long as your loved one is legally competent, they make decisions about their life.

Which includes the right to make bad decisions

4. Driving or incorrectly using appliances, can put others at risk.

If you feel they shouldn’t be driving, get their doctor involved. See how you can help them navigate their needs without having to drive as much or at all. Look to eliminate or disconnect appliances if they forget to turn them off.

5. Let the health professionals deliver necessary messages.

Your loved ones are more likely to accept changes in lifestyle if recommendations come from a trusted doctor, nurse or Occupational Therapist, rather than their spouse or child.

6. Have an OT assess your loved one’s functionality and the home safety situation to determine what needs to be addressed.

7. Look for ways to be creative and offer solutions that your relative would be more accepting of.

When my father had mobility issues, he resisted using a walker or scooter. They made him feel diminished. When we went to the cottage, he rarely left the building as the walk to the beach was too difficult. We bought him a used golf cart. The next day he was the King of Kensington, giving people lifts and taking kids for joy rides. When we got back to the city, he started using his scooter.

There are no simple answers to the dilemma of reconciling our loved one’s dignity and safety. Nira Rittenberg, an OT specializing in geriatrics put it perfectly: “I always try to maintain a person’s independence, sense of dignity and function while trying to assess safety issues. Safety and risks cannot be ignored, however, as ultimately a fall will likely lead to less dignity, and independence. This is a process that takes some negotiating and expertise to deal with effectively”. One day at a time.

Dignity, Identity and Independence

I just saw Elton John’s Farewell concert in Toronto. We had great seats, so great, I could see Elton struggle in the dark to climb the stairs to the stage. He is 72 and has been through multiple lifetimes of experience, recent surgery and illness. I bet there is no shortage of people who told him enough is enough, you don’t need to keep touring – or, don’t climb the stairs, we can elevate you onto the stage. He climbed those stairs. He played 3 hours of outstanding music with his classic showmanship. We all fight to be the people we want to be and do the things we want to do. Then, maybe, something happens and we see things differently – and it’s unlikely because someone we love told us to change. It took Elton John prostate cancer, a deadly infection and being a father to see things differently. He did, and decided that this is his last tour – dignity, identity and independence intact.

“Advocating” means pushing to ensure the best care is provided for people who can’t be a spokesperson for themselves.

When our children are sick, we advocate powerfully and tirelessly for them. We take time off work; make sure they’re never alone; grill every Doctor about what’s going on; zealously ask the pharmacy about what’s prescribed; make sure the specialists are talking to each other; we basically do whatever it takes to guarantee the best and fastest recovery. Advocating for our children is our #1 job.

How about our senior parents or grandparents? They rarely get the same level of advocacy we wield for our children. Their spouse may not be able to understand everything that’s going on and may not want to burden their kids by involving them. Maybe the grown kids don’t live close enough to help daily. Even if grown kids live close by, caring for your parents and your kids at the same time can be very taxing.

The reality is that seniors need advocacy as much as children do. Spend time at Sick Kids and then visit a medical ward at most other hospitals and note the difference in the ratio of staff to patients between the two. Typically when a senior is sick, multiple specialists are involved; more medications are prescribed; and recovery is longer, more complicated and requires dedicated rehabilitation.

What can we do?

1. Be up to date regarding your parents’ medications and medical condition(s).
2. Know their doctors’ names and phone numbers.
3. Ensure your parents have chosen their Powers of Attorney and have considered a LivingWill.
4. If they travel, know the details of their insurance plans (Company, Policy#, Phone #s).
5. In a crisis, meet early with all the family members who are able to help and determine whichtasks each person can take on.
6. Keep a journal in the hospital room where notes can be shared between family caregivers.
7. Take copious notes when talking to doctors and nurses and insist they speak slowly orrepeat themselves if needed so you can understand what is said.
8. Don’t be afraid to make your concerns heard by nurses and doctors and respectfully insistthat your questions are answered.
9. Consider hiring caregivers so you can focus on advocating for your loved one andorganizing details and people. Remember, you also need to get some rest.
10. Rehab is critical to full recovery so stay fully involved once your parent is out of the hospital.

They were there for us — now it’s our turn to be there for them.