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Discussion 3.3: Caregiver Challenges

over 1 year ago
CLOSED: This discussion has concluded.

A caregiver, or family caregiver is a person who takes on an unpaid caring role for someone who needs help because of a physical or cognitive condition, an injury or a chronic life-limiting illness.

  • One in four Canadians are caregivers – 54% are women, and 46% are men

  • 50% of caregivers are between the ages of 45 and 65 (their peak earning years)

  • 6.1 million caregivers are juggling caring for someone close to them as well as their careers

What challenges did you face as a caregiver to someone who was living with a life-threatening illness? What type of support would have made it better for you? For example:

  • Understanding disease pathway

  • Knowing what to expect – how to prepare

  • Financial supports

  • Respite services (someone to look after my loved one while I took care of other things)

  • Home care / community supports

  • Flexible workplace programs

This consultation is now closed. 


  • Support4u about 2 years ago
    I had to quit my job in order to look after my mother. I didn't want to quit but my husband pointed out that if I didn't quit I would likely die before my mother did because I was so stressed all the time. Now, a few years later, I am a widow and quitting my job has had a profound and negative impact on my pension. Even though I should have been allowed to go on a 3 month leave from work or on a reduced workload (as agreed in our work contract) I was not given that opportunity. I was not going to fight that battle because I had no time and caring for my mother was my priority. A Flexible Workplace Program can exist in theory but that does not mean it exists in practice.

    What I learned in caring for my mother, later for my father and then for my husband in quick succession is that the person you are caring for becomes everything and your priority. Unless someone steps in and offers something specific (like "let me pick up that prescription for you", "let me vacuum for you", etc.) you are on your own and do not have time to ask for help. You just do it yourself. No wonder Caregivers die early.

    I wish it was easier to get practical help, respite care, etc. It is supposed to be available in Ontario (and I live in the GTA) but there were all kinds of excuses from CCAC/ LHIN about why it wasn't available and why no one would show up even though there was a scheduled appointment for someone to arrive and help. I heard things like "you only qualify for one hour", "it is Christmas so there aren't as many PSWs available", "the PSW doesn't have a car", etc) Given that everything is budget driven by Healthcare then there should be more help available at home because that is cheaper than sending a patient to a hospital.
    Hide reply (1)
    • MichelleH about 2 years ago
      I completely agree with your comment about you don’t have time to ask for help, you just do it yourself. When I was a caregiver as well as working full time, it was exactly how I felt and functioned for a year.

      I am sorry for your losses.
  • AdvantAgeON about 2 years ago
    Opportunities for education on palliative care should be extended to and emphasized for families and caregivers and not just health care professionals. It is all too common that residents admitted in long-term care facilities have not had advance care planning discussions with their families about their wishes regarding treatment and end of life care. Both residents and families are shocked when health care practitioners open up these discussions with them. A dialogue about death or dying should therefore be opened even before patients are admitted to long-term care facilities to allow for both the patient and their family to prepare. This discussion may even influence the type of care families choose for their loved one. Events like “death cafes” can teach families how to feel more comfortable about discussions about death and dying. We need to create a culture that celebrates living but recognizes dying as an integral part of living and is comfortable in talking and having open and honest discussions about death.
  • Weston7050 about 2 years ago
    Opportunities for education on palliative care should be extended to and emphasized for families and caregivers and not just health care professionals. It is all too common that residents admitted in long-term care facilities have not had advance care planning discussions with their families about their wishes regarding treatment and end of life care. Both residents and families are shocked when health care practitioners open up these discussions with them. A dialogue about death or dying should therefore be opened even before patients are admitted to long-term care facilities to allow for both the patient and their family to prepare. This discussion may even influence the type of care families choose for their loved one. Events like “death cafes” can teach families how to feel more comfortable about discussions about death and dying. We need to create a culture that celebrates living but recognizes dying as an integral part of living and is comfortable in talking and having open and honest discussions about death.
  • PsatCaregiver about 2 years ago
    Just over a decade ago, my mother was diagnosed with advanced breast cancer. When we got the news the doctor described it as “advanced” cancer and they would do their best to try to treat it. At the time, I did not understand the disease pathway and hadn’t realised my mom had stage 4 cancer and she had been assigned as a “palliative case” until one of the homecare nurses mentioned it one day. Initially, I was shocked and thought the nurse had it wrong but as my mom’s health declined, I realised she was probably going to die. I think have a complete understanding of her diagnosis would have helped me know what to expect and better prepare. When my Mom first got sick, I decided that I would work part-time in order to become one of her primary caregivers. My employer was understanding but my finances took a hit. Had I known in advance about how bad her prognosis was, I would have applied and exhausted the Compassionate Care Benefits offered through EI much earlier. In reality, I applied for these benefits when the decision was made to discontinue my mother’s chemo. She died two weeks later, just as I finished the 2 week unpaid waiting period.

    While my mother was ill, we benefited from respite and home care services which were wonderful. The PSWs and nurses gave her exceptional care. In the end of life stage, they set us up with oxygen, a hospital bed and other supplies so that my Mom could achieve her wish of dying at home.
  • jkatan about 2 years ago
    As a caregiver to a spouse living with primary progressive MS I have taken an active role in my husbands care and consider myself part of the care team. I've sought information/research to better understand the disease; but find it difficult to know what to expect in the future as his health declines - from time to time I find myself experiencing anticipatory grief for what the future holds . There are respite services provided by my province, following an assessment of needs - unfortunately in my region there are not enough respite workers for the demand. Another issue facing me is a the ability to have flexibility in the workplace - I work full time and as MS can be very unpredictable it can be challenging juggle work/personal commitments. Being able to work flexible hours, bank time, work from home would be helpful options - I have decided to seek opportunities within my organization that would allow this type of flexibility.
  • bjpalliative about 2 years ago
    I haven't had a caregiver experience like you describe but, if I did, I would definitely rely on our communities' newly created Resource Guide for Hospice Palliative Care. It is a very welcoming document that lays out most of what people need to know, where to go, who to contact, to meet their needs, including financial and legal resources, Home Care, and knowing what to expect near the end. We have used the CHPCA model to help people understand the progression from terminal diagnosis to death, and beyond. The illustration has been met with very good feedback. There is a mountain of important information already developed; people need to learn how to use it to help their communities.
  • Maryisarat about 2 years ago
    My biggest challenge currently is that my brothers have POA....given to them when both our parents were alive. Now that it's just Mom, and she has dementia...they have moved her closer to them but farther away from me - like a 17 hour trip. I haven't seen her since March when I last went up to see her before the latest move they planned for her - I helped pack up all her things because they wouldn't know what was important. Frustrating.
  • HPCReady about 2 years ago
    Consistent, and palliative care educated healthcare providers. Timely, and comprehensive communication between health care service providers (circle of care).
  • 123AbC over 2 years ago
    For me when I was a main caregiver, having financial supports would have helped (instead of living off my savings so I could stay home to be the main carer)....... Having someone from the health care team talk with me, to explain what would/may happen next - to help prepare us, for ourselves and so that we could have taken better care of our loved one. Increased home care and community supports would have been helpful (if the HCP were comfortable themselves with dying and death).
    Hide Replies (2)
    • yvrpcm over 2 years ago
      A big problem is that HCP are NOT comfortable with death and dying - they feel this is a failure on their part. I believe they are behind the general public in this. The general public is waking up to these issues and developing death cafes, death doulas, interest in ACP, etc.
    • TiredCarer about 2 years ago
      Financial security is paramount to any caregiving endeavor. When I cared for my husband, I was fortunate that I was employed as a professional in a unionized environment. I had accumulated significant sick days and was allowed to use them (at full pay) to be with my husband. I could not have managed without that security. I could focus on him and his needs rather that worry about him and how we would pay our bills. We need to work towards better sick leave for all. I have friends who have NO sick leave at their place of employment. I have met people who have lost their homes and have had to apply for social assistance. We can and should do better.
  • ltwaj over 2 years ago
    Caregiving is a full time job. Caregivers are often overwhelmed and feel pressured to take loved ones home from hospital when they are not prepared at home. They are assured that care will be available at home and it is often is not.
    Decisions made by people as to where to die are often made out of need and not by choice.
    Caregivers are often required to perform tasks that they do not feel comfortable doing ie injections , dressings etc. They feel as they do not have a choice.
    Caregivers are frustrated because of the number of staff going into their home. There needs to be some consistency .
    "We" need to be more respectful of people's choices as to where they want to die. Not everyone wants to die at home and not all caregivers want that to happen either.
    Hide reply (1)
    • TiredCarer about 2 years ago
      This question of where to die is fundamentally important. We are bombarded with media telling us that "we" want to die at home. Yes, "we" would all prefer to die peacefully in our sleep in our own home. Unfortunately, for the vast majority of us, that death will elude us. We will require people to bathe us, assist with toileting or cleaning us up after bowel movements and loss of bladder control. We will most likely require medications for pain or confusion. I wonder what the response to the question, where would you like to die, would be if we followed up with who do you want to wipe your bum or inject medications? I think the answers would be different. There is extreme pressure placed on caregivers (mostly women) to take family members home and manage. Home Care in Manitoba is not sufficient. The public system is solely medical task focused and scheduled. If home care has come and gone and your loved one has a bowel movement, you are it. There is no one to call for assistance. Public home care does not assist with any non medical tasks such as laundry or cleaning. Dying people and their families need to have options. Some families manage home deaths very well. They are often larger families or have members with some medical knowledge or facility. They also often live in areas with provide some type of after hours on call support. Many families need the option of hospital or hospice. Unfortunately in Manitoba, there appears to be increased pressure to move dying patients out of hospital but in our region there are no after hours supports and no hospice. Caregivers bear the burden financially and emotionally. I have a colleague who helped care for his dying father over 15 years ago. He still, every time he sees me, comments that he struggles with the thought that "he killed his Dad". He had administered a medication shortly before this father died and has felt guilty ever since. These stories are rarely captured or discussed with families as they make their decisions.
  • Hermione about 2 years ago
    I cared for my 9 year old daughter through her 2.5 year treatment for cancer until she died. I also cared for my two other children, one of whom has special needs. My husband was employed and we were not overly burdened financially but I gave up my job. That experience changed my career trajectory permanently. I would have liked a more honest and open discussion about her disease trajectory, especially near the end of her life. In fact, my husband was not present at her death because the two attending nurses did not see fit to tell him that she was very close to dying. I had little preparation for how she would die, and have always regretted not being able to prepare her for her death more effectively, despite bumbling through some questions. Childcare for my other children was difficult but we were lucky because we have good friends and family. It was my personal community who helped the most with practical support and even with bereavement support, which was virtually non-existent. Thank goodness for late night conversations in the hospital kitchen.
  • genhlisk about 2 years ago
    Home care community support leaves a lot to be desired. Although CCAC generously funded and coordinated local health care visitors in my home to allow me to go out to do shipping, essential appointments etc, there was a huge price to pay....only 1 out of 4 health care workers made any effort to engage or interact with my spouse. 3 out of 4 refused to take my spouse outside for a brief walk, although they were aware she was otherwise pretty much house-bound......they cited lack of insurance coverage should something untoward happen on the walk....one sat on the corner of my sofa for the full three hours of every visit, one tried to forcibly command my spouse to do things....and ended up getting locked out of our house in the bargain, one did little else than read magazines while she sat beside my spouse either in the living room or the bedroom and 3 out of 4 cited the fact that “they tried to get my spouse to agree to be bathed....but hell she wasn’t going for it so too bad.... it appeared clear to me that the failure on behalf of care staff was a combination of don’t give a damn coupled with lack of proper training and follow up by their managers. I fully understand that there are often too many demands on the time of some care givers.....but we have to decide...is it better to do the right thing for fewer people or continue to deliver unsatisfactory services to all while spreading our helping net to the maximum......I know which one I would choose!
  • Mom about 2 years ago
    They should be given utmost support. Takes strain off the system, but puts stress on them
  • Sherry Moran about 2 years ago
    I have witnessed those in the sandwich generation who are bringing up children while caring from aging parents. I would rather my taxes were applied to provide even more support to these individuals. Everyone loses if they are so stressed they cannot give the needed emotional attention to either their parents or children.
  • CCBB_1544 about 2 years ago
    Respite services. Often when a loved one is dying, the family needs a break or wishes to have more care overnight and have to hire someone to come in and stay with their loved one. The nurses are often under-staffed, especially on weekends and at night. A doctor actually being in the hospital overnight to change goals of care would have made a huge difference. We discovered there was no doctor on-site in the hospital, other than Emergency.
  • HPCnurse about 2 years ago
    Two of my favorite resources in Canada are: Virtual Hospice and the Family Caregivers of British Columbia.

    Virtual Hospice provides support for the family members 24/7. They have wonderful resources that are easy to understand.

    The Family Caregivers of BC advocates for family members and strives to respond to changing needs.

    As with all my posts, I feel that education is so helpful.
    I was a teenager when I became a family caregiver. It is much easier to provide care with the knowledge that I have as a HPC Nurse. :)
  • qualicumgirl about 2 years ago
    My life as a caregiver became a battle to keep my mother (and father) in the place where they were getting the care they needed. The institution pushed back constantly. There was no training. No respite. No financial support. I had to leave my job. It was assumed I think that whatever it took, however long it took, I would be there 100% for all that was needed. Totally taken for granted and patronized by the system...all the systems.
  • Trish about 2 years ago
    Understanding geriatric needs would have helped particularly for someone with dementia
  • gunits about 2 years ago
    This one is easy, all of the above.
  • @truedignity about 2 years ago
    I'm in my late 40s and I feel so depleted and worn out, that I feel my career has suffered greatly, and same with my husband's. He'd hoped to take on a promotion but given all of the care-giving, he's taken a step down. We also have to deal with a mentally ill / depressed parent who is even more of a challenge and to be honest, it's very, very hard and depression, insomnia, anxiety, panic attacks, are hardships that feel suffocating and like they are piling up higher and higher. It's terrible.
  • plainfancy about 2 years ago
    The lack of services in First Nations communities, and the jurisdictional issues surrounding off-reserve access is a challenging barrier for many First Nations people and their families. A palliative patient can often be at their most vulnerable in terms of trying to navigate the complex health and wellness system, and it is heartbreaking when bureaucracy stands in the way of discharging a First Nations patient to spend their remaining time at home or in their community, but they can't leave because a multitude of benefits providers are denying coverage for a drug. Just as children with disabilities are in vulnerable circumstances in navigating the system, so too are palliative adults. It's time to apply Jordan's Principle to this group. Ensure services are accessible to patients and caregivers, and work out who pays for what after.
  • JIGJIG about 2 years ago
    Brain Tumour Foundation of Canada is currently working on a resource for Caregivers within our own community because they have unique needs and challenges. Adjusting to a “new normal” after a loved one is diagnosed with a brain tumour is no small task, where treatment may include surgery, chemotherapy and radiation depending on the type of tumour and treatment plan. For some, a wait-and-see approach is taken based on a slow-growing low-grade brain tumour where the caregiver and their loved one experiences “scanxiety” between brain scans (i.e.) cat scan (CT) or a magnetic resonance imaging(MRI). This new normal is a continuous process for the person diagnosed, the primary caregiver(s), and family and friends adjusting to a new reality. Being a primary caregiver for a loved one diagnosed with a brain tumour is coupled with a lot of responsibility and stress.
  • June1964 about 2 years ago
    My father passed away after battling cancer for over a year. During that year he also battled depression and suffered a stroke. That year took a huge toll on my mother as they both tried to have him stay at home. There was respite care for only 2 hours once per week and many appointments with various doctors. He spent 3 months in the hospital suffering from delirium, during which my mom and I visited every day. Some days I was the one to shower him as there was no PSW available.
    I was lucky enough to have an employer who supported me in my need for time off, even though my application for short term disability was denied (apparently my stress level and own inability to think of anything else did not make me “sick” since there were no symptoms of physical illness). There needs to be more financial support for caregivers since we are stepping up to help where the healthcare is lacking. There also needs to be more emotional support for the caregiver.
  • Jnunn76 about 2 years ago
    Since our current model relies so heavily on informal caregivers, we MUST increase the services available to them. The CCB is wholly insufficient to most and not widely known. We have one of the more enviable parental leave programs in the world, why should end of life be any different?
    We must also ensure we are supporting the "sandwich generation" who have both elderly parents and children at home.
  • Robynozz about 2 years ago
    Support the patient and caregivers in all ways. Provide respite care daily through a supervised professional or government organization. Ensure training and licensing of paid caregivers. Spotcheck. Some caregivers are out of their depth. GPs and oncologists should add the patient’s name to a registry. Once in, the registering agency should assign a caseworker to work with the family. That caseworker should provide information, timelines, options and assist with accessing assistance.
  • Depression baby about 2 years ago
    My husband died after a 9 year battle with non-Hodgkins lymphoma in 1979. Treatment was provided at Princess Margaret hospital. Treatment at that point was limited to radiation and a few, rather brutal chemotherapies. Initially he was told he could expect about 3 years so it was a type of miracle (or torment) that he lasted as long as he did. His doctors offered very little information or support and my husband wanted no company when he attended for treatment. He was not communicative with me about what his doctors said and i was not encouraged by him or them to participate. This was frustrating and my independent research was not very helpful. When the time came for the doctors to admit there was no longer anything they could do - on this occasion I insisted on attending - we were dismissed with regret but no guidance or suggestions for what would happen, what we/I should be looking for or what decisions we needed to make. I hope this is not still happening. From that point on we and then I alone stumbled forward trying to cope with the rapid decline and the poorly medicated/managed pain provided by a local GP.
    Even if community support had been available my husband would probably have refused it. Within a fairly short period he agreed to be admitted to hospital to be treated for the pain and within less than a week he was dead. Throughout that 9 year period he rarely and grudgingly addressed some of the financial and practical issues of our life without him. I had time to get used to the idea but little actual understanding of the situation or any options I might have. Throughout that final stretch I was both caregiver (of sorts) and primary breadwinner and parent. It was an experience I wouldn't recommend.
  • MAIDadvocate about 2 years ago
    A flexible workplace program/contract would have eliminated the need for me to retire before I was ready to so that I could assist both my mother and older sister in their long term illnesses. Financial support was pitiful in comparison to other provinces (why is this?), home care and community supports were nonexistent for those with cognitive impairment so the financial obligations of the individual and caregiver was enormous and not recoverable to any significant degree. Respite services were denied by Home Care flat out -- nope we can't provide any respite? The government (federal and provincial) are saving Billions of dollars in not providing financial support and other tangible services not realizing that the mental and physical and financial stress on caregivers will come back in the form of needed health services sooner than later.
  • hospicecounsellor over 2 years ago
    As both a professional working in palliative care, and having been a caregiver, there are many ways that support can be improved. For people who have never had experience with a serious, life-limiting illness, there is a need to understand the "world" they have been thrust into. Language is a basic starting point. Caregivers and patients need to understand the language of health conditions, treatments etc in order to understand, process and make informed choices. Having supportive professionals available to explain, in plain language, would be of great benefit. Getting connected with support from a community palliative service/agency early in the diagnosis will help caregivers navigate this system. People are not typically prepared or knowledgeable in palliative or EOL care, how can they be expected to manage the many diverse roles that caregiving presents? How would they know where supports and services are? Hospice/palliative care service professionals could assess and identify the caregiver needs and ensure that they are linked to the programs, supports and services within their community. In order to make this work, healthcare professionals their offices and institutions need to work together to inform caregivers and patients of the supports available in their communities and encourage them to connect with these. Creating a network of information and referral so that caregivers are recognized and connected is essential. Funding these agencies that provide these supports will make services possible. Caregivers are so often lost in the navigation of the health system when quite often, it is them who are the ones needing to be the navigator/advocate for their loved one.
    Hide reply (1)
    • jp66 about 2 years ago
      So true , the language is very important. It takes time to process the condition and in a family case , the family didn't understand the nature of the illness althought the patient did. Trying to understand the difference between a family doctor and a hospice doctor is very hard., especially if the patient has moved to another area.. All the records should follow the patient moving into a new area even though the patient maybe from another system.
  • JDKL about 2 years ago
    Going through the process of caring for an ill person, was both a treasure and a hardship. Beyond knowing the expected life span of the ill person, my personal understanding of the disease progressed only as the disease itself progressed. I had minimal knowledge of financial supports for medical necessities, and when the need arose, would be "out of pocket" for some supplies. There were wonderful support workers and nurses who helped. We had the maximum support help available without paying extra, and I felt it was not enough. Family members lovingly became care workers at the risk of physical injury and of course, personal emotional stress. It would have been personally helpful to have a "family conference" to know what to expect. I'm sure this was communicated with the spouse of the ill person, but as a caregiver, to have the opportunity to ask my own questions would have been helpful. We were fortunate to have a family doctor who wished to stay engaged in the process with the family and made himself available through the passing. Some of the support nurses seemed more comfortable to only deal with the palliative care doctors. Some making it uncomfortable for the spouse and family members who were all caregivers. However, the family doctor was wonderful, and was a great benefit to both the ill person, the spouse and family member caregivers. There was a comfort for all involved dealing with the family doctor alongside of the palliative care doctor(when necessary). There was respite care, but again, this all seemed not enough. Family members were needed to fill in the gaps, and lovingly did so, but not all families would be available or have the means to be able to contribute as we did, we were fortunate to be able to assist. In the private sector, flexible workplace programs are not readily available or promoted. Taking time off to care for the ill person was stressful, but i'm glad I took every moment that I did.

    Looking at these challenges in hindsight, I wish there was some pyschological/emotional support for the family caregivers. Often times we felt inadequate to take care of the ill person, wanting to ensure their last moments were comfortable, while maintaining our familial relationships to honour our family member.

    There is definitely room for improvement, but our experience was overall a good one, with the ill person passing in their own home surrounded by loved one.
  • jo over 2 years ago
    Financial support was not well advertised, most of the information was word-of-mouth from other care givers or nurses.
    Understanding the disease pathway was very well outlined by doctor and palliative care nurse - the booklet helped.
    Knowledge about available medical devices and support services was not well communicated. Word-of-mouth from other care givers and nurses was a hit and miss - at times, I would purchase what was required only to find my mother had gone to a further physical degenerated state and so I had figure out what else was needed - not knowing what product/devices were on the market (i.e,, bed alert pad for patients who wander).
    Meal times were the worst. Not knowing what is available to assist her to feed herself. Not knowing what foods are the best nutritional and easy to digest. All the research was done by me online, as well as the purchasing (i.e., liquid supplements that were made for lactose intolerance), even what sizes/type of pull-ups to purchase for adult females.
    Hide reply (1)
    • JDKL about 2 years ago
      While dealing with an ill person, adding the task of doing the upfront research isn't helpful. How many times are we re-inventing the wheel. A online site or hotline for this type of help would be great. Just one more relief.
  • chadalmighty over 2 years ago
    Challenges we faced were: lack of nursing services in rural Manitoba to provide palliative care to our dying son. I have a medical background, so I was able to manage it. Some people said that I shouldn't have because I was the "mom" not the "nurse"... but I had to perform the dual roles without the homecare nursing support. Therefore, I administered Morphine, changed and maintained his subcutaneous line, tube feedings, urinary catheter and physical care such as bathing, turning etc. We were fortunate to have a palliative care team from Winnipeg that was in contact with us frequently, and with our Doctor..... this was very valuable. The palliative care team is specialized in death and dying. Even though we live > 200 miles away from this team through technology like email, or phone we kept in contact with them. So... the palliative team support is valuable to the caregiver. Financial support to allow the caregiver to remain with the dying loved one is very important. We were fortunate to have sick plans through work which allowed us to remain home. Now there is a Bereavement leave through the federal government I believe which would help some but may not be enough? We were fortunate to have supportive workplace employers who allowed us to stay home with our son who was dying- which is valuable . If a family one has 1 caregiver to care for the dying patient-- they would need respite to help them because they can burn out very easily and become overwhelmed. The palliative team explained things very well, and having this information helped us understand what was happening. General family physicians may not be as comfortable giving this information to family/clients... so in my opinion-- having access to a specialized palliative care team of physicians, nurses and social workers is the most important need in the end-of-life care. They can make recommendations for end-of-life care treatments making the journey as respectful and palliative as possible.
    Hide reply (1)
    • JDKL about 2 years ago
      Agree with most of this statement. We also de-humanize the ill person, and strip them of their dignity. When support care is not readily available, family often takes on the role of health support work to ensure their loved one is well cared for - often times putting themselves at risk both physically (not knowing proper body moving techniques and care treatment techniques), and psychologically - not allowing themselves to behave in a familial manner with the ill loved one. Believe that the family doctor who has potentially tracked with a patient for most of their adult life, would be an excellent contributor to the health care team, and may want to be alongside the family through this end of life journey.
  • fernandlily over 2 years ago
    As a healthcare provider and a family caregiver, I can say that we (the healthcare system) expect families to do A LOT with very little (to no) medical knowledge and very little access to support. Every single one of the challenges listed above are very real and very present - again I see it personally and professionally. As for supports? More education, more access to healthcare professionals, less business hour only support options, more respite within the home, more help with housekeeping and meal prep/delivery (at a more reasonable price), more access to psychological supports, more funding for psychological supports, more home care (less home care restrictions on what they will and won't do), help with yard work, driving, shoveling snow, etcetera, more employer flexibility and compassion.
    Hide reply (1)
    • JDKL about 2 years ago
      Knowing what is available and help to access it would be extremely helpful.
  • hopeful caregiver over 2 years ago
    caregivers are the back bone of our health care system but are not recognized as such, as so, their needs are generally ignored. This must change...if we are truly going to provide quality palliative care, then we must do so with an interdisciplinary team that address the holistic needs of the person the illness and their caregiver and families. The impact of not doing so have repercussions on the health of those left behind.
    Hide Replies (2)
    • spike about 2 years ago
      I agree with you most profoundly but would add that if what you describe is not done it will cost the governments far more money because more people will end up in long term care homes.
      Hide reply (1)
      • JDKL about 2 years ago
        I wholeheartedly agree that an interdisciplinary team that addresses the holistic needs of the person, separately the illness and their caregivers and families needs is essential. Having the family doctor, palliative care team, and support care team, work together with the person, the illness team, and the caregiver and family is a must.
  • sab472 about 2 years ago
    Do we have enough support for caregivers after they lose their loved one? Could we do better at supporting caregivers in bereavement?
    Hide reply (1)
    • JDKL about 2 years ago
      There could definitely be more support for caregivers following bereavement. It can take a significant amount of time for a caregiver to stop long enough to begin the process of dealing with their own bereavement. Follow-up support is essential.
  • PallCareSW over 2 years ago
    Having worked in hospice palliative care for nearly a decade, I can tell you that caregivers often do not access EI compassionate care because they cannot afford to. That is, the program pays too little to allow them to take the necessary time away from work to focus on their dying family member. Reconsidering this program, and whether caregivers can be paid more as part of this leave, would go a long way towards people accessing the program more, and not having to worry as much as the GREAT financial strain that comes with caring for a family member with an advanced/terminal illness.
  • jcruikshank over 2 years ago
    The CHPCA and the Order of St. Lazarus has distributed close to 500,000 copies of A Caregiver's Guide since 2002. Many caregivers find themselves caring for loved ones with little support or guidance. The comments made by caregivers are very important. CHPCA did a report called the Moral, Ethical and Legal Challenges to Informal Caregiving (the term at that time) in 2005 and sadly I don't think we have moved the bar along much over that time.

    Extending the Canadian Compassionate Benefits (CCB) to 26 weeks is a good start but not allowing any time post death doesn't support caregivers through their grief and bereavement stage. We have asked the government to consider the benefit in place for two weeks post death to allow a short time for bereavement. Expecting someone to go back to work three days after a death of a spouse, child, parent or other loved one doesn't seem very compassionate. We need to better market the CCB.

    CHPCA under the leadership of their Champion's Council has developed a program called Canadian Compassionate Companies highlighting companies that accommodate caregiving in the workplace. It is exciting that some companies are getting progressive around support for employees that must also act as caregivers.
  • endmatters over 2 years ago
    From reading the comments, I think my experience as a caregiver was as positive as it could be, under the circumstances. What made it so were caring individuals rather than an across-the-board regional policy. Our own family doctor visited our rural property. (he didn't have to do this). Our particular palliative team was available by phone 24/7 and visited twice daily if needed. I was given accurate information about what to expect and and a timeline. But individual cases are not always textbook - so health professionals must be flexible in their ability to 'change the course' so to speak. I was fully prepared with meds and instructions on how to use them if need be. My son gently cautioned that I had asked our palliative nurse the same questions 5 or 6 times over. Obviously those questions represented my deepest worries and concerns. The nurse never once indicated that she had already answered my question but gently and compassionately explained it all over each time I asked until I appeared to be reassured. Knowing you have a backup plan and people whom you can call is crucial. Knowledgable confident service providers are crucial. Information and support (resources) are key.
  • lucybrown over 2 years ago
    With the rising population of seniors - the Cresting Silver Wave - we know that demands on the Health Care System will increase, esp within End of Life and Palliative Care.

    Family caregivers (many of them seniors) will require extended home supports. Equally we have groups of people in our society who are lonely, without meaningful purpose and also isolated. How about bringing these 2 naturally occurring groups together? Ages will vary, an intergenerational and inter-cultural group is a good group to start with.

    How can we pair seniors or people coming to End of Life and their families, with the civilian population who are looking for meaningful purpose and relationship, and who can assist them through service? (Money does not have to be the only exchange. Relationships are very valuable and health promoting themselves.)

    Not everyone is good at dealing with death, and end of life, but some people are quite wonderful at it, and find this work to be extremely meaningful - which it can be.

    The way to start this process is simply to begin. Who are the people that would benefit from supporting families and individuals coming to end of life? Find them, invite them. Support and encourage them. Listen to them. Offer training - there are many training programs that already exist for volunteers at EOL. Identify wise practices, learn from some research, find a host agency, a patron and begin. Practice will also inform and improve practice. Act. Not acting, and simply bemoaning our plight is not a sustainable, or helpful response. Act. :-)
    Hide reply (1)
    • endmatters over 2 years ago
      "The way to start this process is simply to begin." YES AND "Identify wise practices, " YES!
  • briant over 2 years ago
    One of the biggest challenges is not having the physical strength to help the palliative care person in and out of bed, roll over, into and out ofthe washroom, etc. etc. Many times we are elderly ourselves and have physical limits - otherwise we could maintain the individual at home for a longer period. We need more that a couple of hours a week from a person such as a personal care worker. With a couple of hours per DAY of help, the individual could remain home for some period and this in turn would free up the hospital or nursing home and in the long run would save money but with the present very limited time given for assistance it becomes impossible to have the individual remain home and instead he or she is placed in a hospital at a very high cost. Also the individual in most cases would prefer to be in a home environment.
  • Allbwell over 2 years ago
    I'd love to help you with this but your setup for me to enjoy participating is painful. I'm opting out.
    Fix this participation module so it's easy to partipate..... Don't forget you asked us to be anonymous, so why all the 'red tape' of getting into the site???
  • Midnight1217 over 2 years ago
    I have watched both my father and mother-in-law care for their spouses without any help except what the family could offer. Many of us live far away which is common these days. In my father's case there was some Homecare but he was carrying the burden of the nursing care which wasn't fair to him. In my mother-in-law's case there was no support at home at all because my father-in-law had a stroke and the illness progression was much slower. She was tied to the house not being able to even go out to get groceries. She was the sole caregiver for years without any respite at all. Not right.
  • MomofJack over 2 years ago
    For me the top 2 is
    1) respite - I have had to become a stay at home mom to care for my very medically fragile son and it is mentally and physically exhausting. With out respite we the run the risk of caregiver burn out and then there is 2 people to care for
    2) financial aide - during all the stress of caring for someone with medical needs we do not need the added stress of trying to figure out how to pay for all the equipment and renovations that are must haves. The additional stress only makes it harder on the families. To be clear, charities are hard to qualify for and if you get approved they don't provide everything.
    Hide reply (1)
    • Shawna-Marie over 2 years ago
      100% living this!!! I was at a point in my profession that would have ensured financial success, my life and career took backstage for the extreme care and concern of my medically fragile son medically. I am forever more part of an integral part of a new life journey. It's not easy to worry and provide quality care of my son, the rest of my family, let go a career and a change of life and I have not even mentioned self care. Breath Sigh. Absolutely charities are hard to qualify for, have long wait lists and who has time to apply...
  • cam over 2 years ago
    Understanding what to expect in the last months/weeks is important in order to mentally prepare for the end of someone's life. There needs to be increased access to palliative care services in all communities so that a person can receive the best care for themselves and for the families that support the person going through a life-threatening illness.
  • momforlife over 2 years ago
    My Mom was in a nursing home with a very small room when she died. They said that she had palliative care but there would have been no room for all of us to be there with her when the time came. That is why I feel that Palliative Care offered in a facility that has room for family to visit up until the time that the person dies is important.
  • DRED over 2 years ago
    For me respite and financial support are most important .. they do enable some of the other points in the list.

    However, i have no personal experience with being a long term caregiver. Only a few weeks with my Dad, assisting other family members.
  • Redsunset over 2 years ago
    Financial supports are very limited and there needs to be more support for terminal illness families before the word pallative is used in the care plan.
  • palliumcanada over 2 years ago
    Through Pallium Canada’s community engagement, a number of caregiver challenges have been identified. These included key areas of information that are needed for caregivers: (1) Impacts of being a Caregiver (2) Self-Reflection/Contemplation (3) Dealing with Logistics of end-of-life (4) Death Literacy (5) Communication Tools from a true “holistic” lens
    There is also more that could be done to educate healthcare workers on the caregiver supports that are available and to better integrate these supports into the continuum of care. There needs to be an element of empowerment to this education so that the caregiver can be comfortable when talking to healthcare providers. Many primary caregivers feel they are forgotten by healthcare workers and/or are not heard. Finally, there are opportunities to improve communication within and between healthcare professionals and volunteers/community supports; having everyone from the physician to the volunteer using common language and messages will help ensure consistent information. This can help to increase transparency regarding what is happening so that nothing is hidden from the caregiver and/or patient.
  • soimportant over 2 years ago
    all the examples which you give are meaningful and necessary to assist them when supporting the person with a life threatening illness -t hat does not mean just at the end of life; it starts when the diagnosis is made.
  • cvanbreemen over 2 years ago
    I wonder if your stats include mothers and fathers caring for seriously ill children. As we advance in medical science, children with complex conditions are living longer with enhanced technology and burden of care. Mothers of these children are most often unable to work outside of the home and also struggle to themselves or their other children. These people to need to also be considered in the action plan
  • lucybrown over 2 years ago
    Health Canada, with the stats that you are posting above, can you see that a community based support and training system for carers is essential? Allowing family members to stumble around in the dark as they witness the ongoing demise of their loved ones, is not good for anyone. And it costs way too much in personal loss, crisis, not to mention health care $$. Time to step up!

    6.1 million caregivers are juggling caring for someone close to them as well as their careers

    Caregivers in Canada spent over $12 million in 1 year on expenses related to their caregiving role
  • HOME over 2 years ago
    There needs to be a shift in the Home Care programs to include advanced Palliative Care training including what services or supports are available in each community. Caregiving is a full time job, and the demands of primary nuclear family, workplace, and other roles suffer as a result. Respite helps, but ultimately, the understanding of nuclear family, extended family, and work place is critical to caregiving. We need better and earlier communication about end of life issues and especially in oncology, earlier referral to palliative care, even when the person is still receiving treatment. The more time they have to think about the end, they better prepared they will be to cope.
    I have read many of the inputs here, and see incredible points. Now, I hope the government will read all of these points and make the changes needed.
  • palcare over 2 years ago
    Caregivers need all of this information and at the right time. End of life care discussions need to happen sooner if possible. I feel there needs to be a shift in the Home Care programs to include advanced Palliative Care training including what services or supports are available in each community.
  • drvho over 2 years ago
    Illness and end of life is never convenient. Caregiving is a full time job, and the demands of primary nuclear family, workplace, and other roles suffer as a result. Respite helps, but ultimately, the understanding of nuclear family, extended family, and work place is critical to caregiving.
  • Community Hospice Champion over 2 years ago
    Health care providers prioritize needs with palliative person being primary what we need to remember is that the palliative person achieving their goals is heavily reliant on the caregiver. We have to listen to the caregiver and respect, plan and provide support that responds and predicts there needs - we need to observe and listen to what they are saying and communicating. As a community hospice provider I would suggest that a number of hospitalization that happen in the last month or days when someone is actively dying is the individual had access to improved support and education provided by a team of knowledgeable hospice/palliative care consistent team of carers. Consistency in team would also prove to be as asset. Families now will tell us they can have multiple different people in their home in any one week ( i.e. 10 different PSW's).
    Hide reply (1)
    • Jashmeister over 2 years ago
      Completely agree. The discussion around palliative care always focuses on what is perceived as best for the dying person. However caregiving & supporting someone to die at home is no small thing... a role that not all people are up to. No amount of in home help would have made my father any more comfortable being primary caregiver to my Mom. I would get sobbing phone calls from my father in the middle of the night, thinking he had prematurely killed my mother. He was supposed to manage meds & needles but in his distraught state, he mixed them up or just wasn’t nice sure. They we both calmer, more comfortable & able to deal with her impending death in hospice - where he didn’t have to feel responsible for her care (or ultimately her death). I would like to hear less of the ‘dying in the home is always best’ mantra and more respect, understanding & options for families to choose what is best for them.
  • yvrpcm over 2 years ago
    Healthcare professionals did NOT answer even direct questions, even when not in the presence of the patient (who also wanted answers). Why was she not eating? We wasted time, effort and worry on this when in fact it is a normal course of events.

    The role of a social worker was not explained - we thought they only worked with issues like kids not attending school! In fact I have now learned they can be the "ringmaster" and patient navigator, and can be in some ways the most helpful people on the team.

    Home health support from our health region is poor. Lots appears to be on offer but it is hard to "qualify" for it. The girls they send are very low level with little or no knowledge, training or interest. They are almost more trouble than they are worth but you have to be "in the system" for when something major happens.
    Hide reply (1)
    • Delta Starr over 2 years ago
      As a social worker in long-term care I appreciate and loved your comment about us being "ringmasters and patient navigator". Sometimes its hard to give someone a quick summary of your roll at a facility and that sums it up really neat and tidy.
  • Jashmeister over 2 years ago
    I live an hour away from my parents, making it very difficult to be able to
    Offer the support that they needed when my mother was palliative. Now I am caring for my Dad at a distance - making me reliant on the staff at his retirement home - which is ridiculously understaffed & poorly trained. I do not understand why retirement homes do not have some basic staff ratios & training for all staff to get their licenses.
    Hide reply (1)
    • Delta Starr over 2 years ago
      I am not sure where you are at, but here we do have a set staff to resident ratio as set by governing bodies. Our health care aids and Nursing staff have to have licenses and do proper continuing education. I am sorry to hear that this has not been your experience.
  • Brad Inkster over 2 years ago
    Access to respite care is costly and not always available in a timely manner, which creates further stresses to the patient and family care givers both financially and psychologically.
  • rae over 2 years ago
    I am a healthcare provider and have had family caregivers express challenge with access to hospice or residential care. If a person does not quite meet the guidelines for hospice, they may have to apply for residential care and there are lengthy waits for placement. Some caregivers are experiencing severe caregiver burden because they are managing full-time jobs and cannot afford to take time off; some caregivers also have their own young children and cannot afford child minding; and some caregivers have their own health issues but cannot afford respite for their loved one. Access to subsidized respite would be beneficial in many circumstances. In my own experience caring for a family member at end of life, other family members refused to allow home supports in the home because it was always a different worker and they could never give us an exact time. There is a shortage of home support workers and maybe more funding/supports need to go into making sure reliable home support services (subsidized) are available for people who need respite and end of life support. There is still a fee for subsidized home supports and some caregivers will refuse home supports even though they are experiencing caregiver burden because they cannot afford it.
  • CarePartner over 2 years ago
    This is a big topic. I am a health care provider. One of the challenges to care giving is seeing individuals and families trying to cope but not really understanding the path they are on. Often they are still trying to talk about one last treatment or another round of chemo, or going on a trip etc that is probably not realistic. We need better and earlier communication about end of life issues and especially in oncology, earlier referral to palliative care, even when the person is still receiving treatment. The more time they have to think about the end, they better prepared they will be to cope.
  • Marvel over 2 years ago
    as a health profession, I wanted to be able to be with my father at home at the time of his death. This was in 2003 and when I inquired about compassionate care benefit , I was told it was not available. As a single parent of two children I was not able to get the support to have my father remain at home. He sadly ended up dying in the hospital. Limited help in my home was available to my family.

    In the case of my mother a few years earlier, I had come from Montreal where I worked to set up services for my family to care for her at home with my brothers, sister and dad providing care. The home support agency would not put in personal support workers for me to train (for when I left to return to Montreal) as they said I was there to do the work and they would put them in when I left. After a month I left and within two days my mother was admitted to hospital where she resided for three months prior to dying.
    It could have been so different for both these situations.. at least in 2018 some progress is being made.
  • Letstalk2018 over 2 years ago
    Supports that would have made things better for me include respite services, home care and flexible workplace programs. Another would have been to have my loved one closer to me, as he was an hour away and I had him on a waiting list, but finally got a call that a spot was available the week he passed away.
  • chatterbox over 2 years ago
    Staff who have to care for a loved one struggle financially as often there isn't assistance for them to do this. Family often can manage up to a certain point until the end is near and often suddenly need help. Having staff who can provide this help to them in a timely manner for as long as needed is key.
  • FJET over 2 years ago
    Being a caregiver can be a lonly and a priveledged time. They need to be well informed of the disease process as well as important signs to watch for, what to worry about, what not to worry about. A contact number for healthcare worker, not necessarily the doctor when questions arise.
    Hide reply (1)
    • yvrpcm over 2 years ago
      A 24/7 phone line is vital for the reassurance of the patient and caregiver, even if it is not often used. The person at the other end of the line should be able to access the records of the patient so they can talk knowledgably about the situation and tell the caregiver if/if not they should take patient to ER (an awful process in and of itself).
  • candysurvey over 2 years ago
    From speaking with caregivers, I most often hear, "I didn't realize I was a caregiver until I was in the thick of it." It is very important that from the beginning (at diagnosis) we education individuals on the disease pathway so they know what could happen. We need to honest with them about the challenges they could face. We need to help them be proactive and plan so they are prepared as needs change (i.e. is there something they could do to their home now that will make it easier as the individual deteriorates, or what equipment might they need). We are so reactive to these challenges, it seems to be we act once the wheels are falling off the bus. We need to assist individuals in thinking about their networks and developing those networks so this caregiver role does not fall to one individual.
  • David over 2 years ago
    While I have never been a primary caregiver, I understand financial challenges many face. Some have to give up their jobs or temporarily take time off work. There should be a compensation system in place. Just a thought...perhaps a small RESP-style deduction from our paycheques (voluntary) could go to a leave-of-absence fund for use in these situations. If unused, the fund could be fully refundable, with interest, upon retirement.
  • Tica24 over 2 years ago
    Caregivers that are less than 65 years of age should be compensated—even if's it's minor.
  • sunshinecaregiver over 2 years ago
    The biggest challenge for me was knowing how much time we had together and therefore being able to plan how often I took time away from work to be together. I lived in a different city from my mom and in hindsight, if I had known things were going to go so quickly, I would have been there more.
  • eegr18 over 2 years ago
    challenges are numerous, a rapidly aging population, with many people living alone, and caregivers being made to provide care that used to be offered in hospital or rehab or respite care ..often highly technical and beyond the comfort level of many....respite care, home care all super important as is the compassionate care benefit
  • ruggma over 2 years ago
    REspite and flexible workplace programs- more prparation on what to expect
  • Marnie over 2 years ago
    There is a serious of lack of (correct) communication. Too often, no one seems to know what is going on and either there is nothing communicated or there are contradictory communications. What support there is is insufficient. Our medical resources are stressed and stretched - and sad. :-(
  • Tsawwassen over 2 years ago
    Home Care
    People who can stay with the patient over night
    Support services at home
    Respite services
  • Richmond patient over 2 years ago
    Some kind of tax deduction may help financially. More community support will be useful.
  • alliedhealthworker over 2 years ago
    I care for a family member with chronic (not imminently life-limiting) diseases and find that the most challenging aspect of care is their acceptance of paid help in the home (e.g., PSW). I think that what underlies this is my family member feeling a loss of control over their environment/situation and wanting to have consistent paid caregivers that they can "interview" (e.g., publicly funded services in our area do not allow for selection of specific paid caregivers, and there is not a guarantee that the agency caregivers that will be sent will always be the same individuals).
  • cam over 2 years ago
    It is important as a caregiver to understand what to expect as the disease progresses. Earlier access to palliative care services and the palliative care program is essential to support me and the person living with a life-threatening illness. The palliative care program would be able to offer financial help with medications and home support.
  • bluejay over 2 years ago
    I work with a group of people who are all caregivers and their needs are rarely met. One of the problems is that they are older individuals caring for spouses and they do not know how to self advocate in the health care system. They grew up in the era when doctors were authority figures who were always right and they didn't feel they had the right to question. Consequently they are often confused about why specific treatments are being used, why they themselves cannot get any help and what they should expect moving forward. It is of paramount importance to get government health care services to provide as much support to caregivers as they do to the patients. If caregivers burn out the hospitals will have to take over. It is more economical to support caregivers in any capacity they need.