Family Caregivers BC

Family Caregiver Resources

Travel Tips

By

TRAVEL TIPS

My mom is getting ready to visit our family and, although the flight isn’t excessively long, it still works out to be about a 12-hour day including layovers, flight time and getting to and from airports. She doesn’t complain about her physical challenges: a sore knee aggravated by tight spaces; walking long distances; standing for lengthy periods and on uneven surfaces; edema in her leg due to previous radiation treatments for cancer; and a shoulder prone to dislocation. Travelling often exacerbates her symptoms, but she doesn’t always vocalize these challenges.

While it’s unlikely my mom will take advice from her youngest daughter to ensure her trip is as comfortable as possible, perhaps you will take away some handy tips before your next trip.

Make Friends with Reality. Be very clear with your travel agent, transportation company (plane, cruise, train, bus) and accommodation provider about your limitations. This is not the time to be overconfident or minimize health, mental or mobility challenges. Also, not all disabilities or challenges are evident, and giving specific details allows for better service and planning.

Research your destination. Take time to become familiar with climate and ease-of-access places to go and see. Most cities are investing in accessible communities and will often provide information on accessible attractions. It’s also handy to find out about medical and health facilities at your destination.

Medications. Ask how medications are handled at security checkpoints and what documentation you need to bring. For example, most transportation providers request that you keep all medications in their original containers and some over-the-counter products from Canada require prescriptions in other countries, including the United States. Keep all information about your prescriptions with other documentation close at hand. Pack an extra supply of medication. If you use oxygen, airlines have rules about how they handle it, so check beforehand.

Assistive Devices. If you use a wheelchair or other mobility aids, let your transportation company know ahead of time to allow for proper preparations. You may need to transfer to a boarding wheelchair somewhere between check-in and boarding, and you can ask to delay this for as long as possible. Ask how your mobility aid will be secured and stored on board. If you have a hearing aid, be sure to carry extra batteries, and always carry an extra set of glasses, as well as the prescription for replacement, in case of loss.

Best Bit of Advice: Give travel and accommodation providers at least 72 hours advanced notice to ensure you get the help you need. You may also want a friend or family member to assist you through the terminal. Ask

ahead of time if you can get a temporary pass to get your escort through the secure zone to the boarding area.

Download Take Charge of Your Travel: A Guide for Persons with Disabilities at www.otc-cta.gc.ca/eng/take-charge. We’ve had excellent feedback about this guide and one of main takeaways is to use the service by calling 1-888-222-2592 or by TTY at 1-800-669-5575. Or send an email to info@otc-cta.gc.ca and they’ll point you in the right direction. If you are travelling locally in BC, the www.hellobc.com site has a page (click on About BC tab) dedicated to information on accessibility and accessible locations and activities.

Finally, enjoy the journey!

Remembering Katherine Willett

By

This is a team tribute to Katherine Willett who was fondly known by many nicknames in our Victoria Office at Family Caregivers of BC (FCBC).  Self-referenced as “Weedy Willett”, Katherine was tireless in her quest for family caregivers.  She dug into details and as the “Networking Guru” spread the word wherever she could about the need to get caregivers the attention they deserve in the health care system. Katherine completed her Post Baccalaureate Diploma in Gerontology at SFU in the late 1990s and firmly believed in supporting upcoming students in the field.   Katherine was also extremely aware of the specific needs of multicultural seniors and caregivers and frequently connected with multicultural organizations to develop capacity to increase family caregiver support. Her passion for family caregivers and the advocacy work she did stemmed from caring for her mother, affectionally known as Mamie.  Katherine joined FCBC as part of our provincial program in 2014 and was our feet on the ground in the Lower Mainland. We came to know Katherine long before that in her volunteer Board role with the Caregivers Association of BC, staying in touch as it closed its doors in 2010 and always making time to encourage and support us as we took on the BC champion role.  She leaves big shoes to fill.  We miss her dearly and all that she brought to her work.  Her contagious passion for getting the word out about caregivers, her understanding of the ins and outs of the health care system and the challenges of caregiver navigation. We miss her prolific supply of emails, offering a vast range of content and colour, and her surprise package in the mail that said she was thinking about us.  We also miss her wacky sense of humour and stories about her life in English Bay.  A huge pooch lover, Katherine spent precious hours with her late dogs Internet and Groovy walking on the beach.  And always a funster, she even ventured down the slide at Second Beach – no doubt wearing a multicoloured bathing suit and a pair of her wild glasses.

Katherine, we will remember your smile and commitment as we continue your work for family caregivers – both in the weeds and into the water supply.

Tips for dealing with the health care system

By

By Wendy Johnstone

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

By

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

By

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

—————

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.