Family Caregivers BC

Family Caregiver Resources

Tips for dealing with the health care system

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By Wendy Johstone

Mrs. B is 70 years old was diagnosed with Alzheimer’s Disease five years ago. She is on the highest dosage of a “memory pill” and is well supported at home with her spouse. She is very functional and maintains a high level of independence and quality of life. But cracks are starting to show. Three months ago she fell and hit her head hard resulting in blood on her brain and notably, a decline in her memory loss. Her physician felt it would be important to monitor over a few months to see how well she “bounced back”. Mrs. B also presents very well and most times when people meet her, they don’t understand just how affected she is by her memory loss. As she and her spouse went to see her physician today to make some decisions about her medication, a memory test was given. The physician was shocked at how poorly she did. Her spouse wasn’t as shocked. Mrs. B was devastated and was grief-stricken with news of her advancing loss.

A diagnosis of a complex or life-threatening illness brings in its wake a complex decision-making process. Few individuals make decisions entirely on their own. Usually, family members are part of the picture and their interests are at stake, too. Most people are not aware that community health services and supports are available to them too. This concept, with the added complication of having to make decisions for a person who may be cognitively impaired or injured, very ill or frail makes the decision-making process even more important for the family caregiver. Your role to observe and report on the care receiver’s condition becomes essential.

Below are some tips for family caregivers to consider when dealing with “the system”.

Taking Stock

Before family caregivers can navigate the range of community services and the health care system, it is a good idea to have a sense of what the person they are caring for needs.

Often caregivers aren’t completely sure. This is completely normal. Very few of caregivers have medical or nursing training or case management skills. Many caregivers are thrown into their roles overnight.

A starting list includes:

· What are the current health problems? What are the prognosis and treatments to date?

· Any medical emergencies recently?

Is there memory loss? For example, many missed appointments, unopened mail, unpaid bills, scorched pots/pans, inability to recall conversations within 24 hours, etc

· Are there behaviour changes?

· How are they managing daily activities such as:

o Transferring from bed

o Personal care – bathing/showering, toileting

o Getting dressed

o Preparing meals, cleaning, laundry

o Getting about in the community

· What kind of support does the care recipient already receive and who is doing it?

· What is the financial situation? Are there resources for additional services?

· Is a Power of Attorney, Will and Advance Care Plan in place?

Health Care Provider Relationships

The health care system is designed for the people receiving and using services. This doesn’t always include the people doing the caring. As family caregivers, one of the first steps you can do to successfully navigate the health care system is to establish yourself as part of the care team.

It’s important, of course, to get permission from the person you are caring for, to be their advocate or extra set of ears.

You’ll need to formalize your role. This means becoming a Health Care Proxy and/or Patient Advocate. When you go into a health care appointment with the person you are caring, you will need to provide a copy of a Health Care Proxy and/or Patient Advocate form.

Be Prepared for Your Appointment

· List all your concerns and symptoms.

· Prepare a list of questions for the health care provider.

· Take a notebook, list of medications and write down the answers to your questions.

· Clarify any instructions. I.e. what follow up needs to be done, what you should be observing re: improvements or changes, list any care directions then repeat back for confirmation.

Who’s Who in the Community

Many services are provided in the community. Our health care system has services that are provided both publicly and privately.

The difference between publicly and privately funded services is based on the type of service and eligibility. Knowing “who’s who in the zoo” can be tricky to keep track of especially when you or someone you are caring for is receiving help and support in their home.

Mr. D, is a 59-year-old man who is recovering from a stroke he sustained 4 months ago. He is now living back in his home after being discharged from the hospital. He doesn’t have a spouse. He has two kids, both out of town. Mr. D is doing quite well considering his brain injury. He needs some support in organizing his day to day activities and needs some help with reminders.

If you ask Mr. D who helps him, “I have so many people coming and going and I have no idea who any of them are”.

He and his family aren’t alone in feeling this way.

In Mr. D’s case, he was receiving help from a private agency for medication monitoring (specifically his insulin) and he had a foot care nurse coming every 6 weeks. He was also receiving home support from Home and Community Care and outpatient rehabilitation at the local hospital. He also had a provider from a non-profit organization providing navigation services for people affected by brain injury and stroke.

Essential Tips to Stay in the Loop

· It is a good idea to list everyone who is helping you or someone you are caring for, who they work for, what services they provide, if it is private pay, publicly funded, non-profit, volunteer, family or friends and when the services are provided.

· Keep this list handy and in a place that is very visual. Depending on the people/organizations involved and the frequency of services, creating a calendar is a very handy way to organize the list. It is also very helpful for the people who are providing service to make reference to that the list.

· If possible, keep track of who comes to see you, and when and what the service or outcome was. For example, a physiotherapist from the publicly funded system comes to your home to see how safe your home is. Write down their name, title, phone number/email address, what they did and have them write out a few key points from the meeting or attach any information left behind.

· Have a list of questions you need to be answered. Health and service professionals are often quite busy and may seem rushed. Being prepared leads to better outcomes.

· Think about assigning one person as a primary contact person. A family member or trusted friend can also serve as the caregiver’s point person. Coordinating who is doing what and when is critical as it can be overwhelming and confusing for the care recipient to juggle and remember various visits and calls. The primary contact can also relay the information to the rest of the family.

· When a care or service provides makes an initial home visit for an assessment with the care receiver:

o It is best that the family caregiver be present.

o Make sure you are clear about all the services available for the care receiver.

o Ask what kind of support is available to you as the family caregiver.

o Develop a rapport with the provider and inquire about follow-up.

· A very important question to ask yourself as a family caregiver, “What help will I need to continue effectively as a family caregiver?”

Finding a New Normal

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A friend in his mid-50s cared for his wife for over 10 years before she died from complications related to her chronic and often unpredictable disease. He juggled being a business owner, a husband and a caregiver. After the initial shock and grief of losing his wife, he found himself wondering what his life was going to look like if he was longer a husband or caregiver.

He allowed himself to grieve his wife’s death with self-compassion, and gave himself permission to experience feelings of sadness, anger, and joy in her memory. He realized he could commit to friends and family on simple evening plans and even booked an extended vacation for the first time in over five years. It took time for him to work through his learned response of expecting difficult news, and to experience a regular sense of optimism and hope again.

Another friend, in her mid-60s, cared for her life partner who was 10 years older than her. He had a stroke and the care was physically and emotionally exhausting. She recalls that he couldn’t speak due to aphasia and he required daily assistance with his personal care. When he died three years later of a second stroke, she found herself feeling a range of emotions: relief, anger and guilt.

Feelings of loneliness were pervasive immediately following his death because she realized she had lost touch with her social and leisure connections while caring for her husband. Her sense of purpose vanished. She also experienced big swings in her emotions. Even though her husband was gone, she felt moments of intense anger towards him, quickly followed by guilt. She took the opportunity to seek a counsellor to support her. Slowly, she rebuilt her community of friends through regular social gatherings and returning to her fitness regime. Volunteering for the local brain injury society mentoring other caregivers gives her joy and purpose.

Of course, there is no single answer to how to process caregiving and life after it ends. It depends on a caregiver’s emotional temperament, the relationship between the caregiver and the person they cared for, the circumstances around the death of the loved one and the time and energy spent as a caregiver, among other factors.

Both of my friends relayed a few common take-aways:

* It takes time to process the caregiving experience;

* Being patient with oneself and showing self-compassion daily;

* Finding support during the caring experience – and afterwards – was pivotal in finding a new normal post-caregiving.

After living with a loved one with major health and mobility changes, neither caregiver takes their own lives and abilities for granted. In fact, they are both focused on living life with joy, intent and purpose.

Personal Planning Tools

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By Joanne Taylor

tax credits for family caregiversTax season is a reminder to family caregivers to check on the necessary legal authority that allows them to help a spouse, aging parent or other person they support. Many people tend to focus on estate planning and making a Will. This type of planning is for after death. It is also important to do personal planning – in case help is needed when a person is alive.

Personal planning is about making legal documents in case of incapacity, for end-of-life and for other support needs. This article only discusses personal planning for financial and legal affairs.

What if the person you support is not mentally capable of signing their homeowner grant on the municipal tax form? A caregiver needs legal authority to sign on the person’s behalf.

Other financial matters a caregiver may have to manage include applying for the Disability Tax Credit, renewing or cancelling car insurance, redirecting the mail and/or arranging for direct bill payment of residential care fees.

There are two legal documents available in BC to cover financial affairs. An Enduring Power of Attorney is the most familiar and can give the most authorities.

An Enduring Power of Attorney can be “general” or it can be limited to “specific” matters. Unlike a Power of Attorney that automatically ends if the person who made it becomes mentally incapable, an Enduring Power of Attorney will continue or endure despite mental incapability.

Sometimes it is tempting to ask a legal professional to include wording that says the document only comes into effect when the person becomes mentally incapable. Although this idea seems logical, it is not helpful given the variety of circumstances that can arise. Sometimes a person is mentally capable but needs help due to a physical illness.

Mental incapability is generally not an “all or nothing” situation; it can fluctuate. An Enduring Power of Attorney is most helpful when it gives general authorities and the flexibility to act in all circumstances. You must be 19 years or older and mentally competent to make this document. A lawyer or notary public can draft it.

The other legal document in BC that covers some financial and legal affairs is the Representation Agreement. It is for routine finances, as outlined in section 7 of the Representation Agreement Act. Routine finances include the types of matters discussed earlier in this article, but it cannot cover dealing with real estate, business matters or lending or using the person’s money to benefit someone else.

You must be 19 years or older to make a Representation Agreement with routine finances. This document has proved very helpful to family caregivers because, under section 7 of the Representation Agreement Act,

a person can make it even if they cannot make an Enduring Power of Attorney or manage their own affairs. It avoids adults losing their rights and becoming a non-person under guardianship.

You can find more information and legal forms on the website of the Nidus Personal Planning Resource Centre at www.nidus.ca

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The Nidus Personal Planning Resource Centre and Registry is a non-profit charitable organization. At www.nidus.ca watch the video above the photos for details and forms on personal planning in BC.

Moving to Complex Care

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Making the decision to move a spouse or aging parent into long-term care is one of the most difficult decisions families make. Guilt, resentment, confusion and relief are just some of the emotions caregivers experience. Many families tend to underestimate how difficult the transition can be and often find themselves practically and emotionally unprepared.

Family caregivers and the person they care for are often overwhelmed by the magnitude of the decision and the process. While the logistics of any move can be demanding; preparation for the move and the post-move adjustment can be daunting.

Long-term care, also known as complex care, is a facility that provides 24-hour skilled nursing care and supervision for people who are no longer able to care for themselves. Staff members administer medications and assist residents with daily activities such as eating, bathing and dressing. Less than five per cent of older Canadians live in complex care, with the average age in their late 80s.

Eligibility for government-subsidized complex care is evaluated and determined by a case manager at a local Health Authority. Factors considered include: the person’s health status; the family caregiver’s ability and willingness to provide the necessary care; additional support in the home; and if community resources currently being used are appropriate, safe and sustainable.

Those assessed as having the greatest and urgent needs are given priority for admission to the first available and appropriate bed. Cost is a daily rate based on 80 per cent of the resident’s income. Private Residential Care, where no subsidies are available, costs from $3500 to $6500 per month.

Once the decision is made for complex care, it can feel like having to “wait it out.” For some families, this part of the transition is the most difficult as they live with the uncertainty of when a bed will be available and feel they need to be prepared for a move at a moment’s notice. This waiting period can lead to increased anxiety and stress.

Building a circle of support is crucial. Choose a team of people to support you – emotionally and physically – as well as supports that have practical skills including experience caring for someone in complex care, legal and financial expertise, excellent listener, etc.

If you are a joiner, think about a Caregiver’s Support group. There are several groups for specific diseases such as stroke, Parkinson’s and dementia. If you are having difficulty finding information on how to access these groups, contact the Family Caregivers of BC directly and we’ll point you in the right direction.

We know it is easier said than done, however, caring for yourself as a caregiver is one of the most important things you can do for your family

member – and yourself! Though it may change, your role as a caregiver doesn’t end when the person you are caring for moves into complex care.

 

 

The Value of Peer Support

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By Wendy Johnstone

family caregiver support group“New to the caregiver support group, I was so nervous and skeptical about attending. My doctor suggested I give it a try. They were all strangers to me; I wasn’t sure if I wanted to open up about my wife’s disease. As I walked to my car after the meeting, I felt a big weight lifted from my shoulders. The difference: even though my role as a caregiver was unchanged; I knew I wasn’t alone anymore. I came as a stranger, but I left feeling like I was part of a family.”

A family caregiver is a family member or friend who gives unpaid care to an adult either at home or in a facility, who has a physical or mental health condition, chronic illness or frailty due to aging. Twenty-seven per cent of British Columbians are caregivers; the majority are woman and almost 90 per cent of caregivers provide support and care for over a year.

There are many different perspectives about what is most important to people providing care, ranging from training, support, education, counselling and so forth. Often, the value of peer support is overlooked. Caregivers seek peer support at different stages in their caregiving role. Often linked with positive long-term health and wellness, research shows that when family caregivers participate in peer support, there is an overall improvement in health, and decreased feelings of isolation and depression.

Peer support provides caregivers dedicated time and space to be with other caregivers dealing with similar issues, a place to receive and give support and a safe place to vent. Support groups allow caregivers to focus on their needs, not just the needs of the care recipient. It aligns with the philosophy when the oxygen mask drops in an airplane cabin. We always put on our own mask first before helping the person who needs us.

Caregivers who attend support groups will tell you it isn’t all “airy fairy” talk about feelings. Support groups are invaluable places to hear specific tips on navigating the system and how adjusting one’s approach can be a game changer. Participants often say they truly listen to another’s perspective or ideas because “they get it.”

Peer support emphasizes preventing caregiver burnout and the idea that family caregivers can directly impact the well being of the person they are caring for. It’s common for family caregivers and their care recipients to have differing perspectives; having a group of people who understand what you are going through is priceless.

The best place to find support is to start by calling the Family Caregivers of BC’s toll-free (in BC) Caregiver Support line at 1-877-520-3267.