We Need To Do Better…

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This is not going to be my usual ‘there’s a lesson in there somewhere’ post. Let’s just consider it my first published rant.

Have I mentioned that cancer sucks…royally? Have I mentioned that navigating the health system for a person who is dying with cancer is beyond ridiculous? This is our family’s experience.

A once vibrant woman, my mother was diagnosed with glioblastoma all of 11 weeks ago and has been reduced to a swollen mess, unable to walk, let alone hold herself up in a sitting position. Initially diagnosed at one hospital in Urgent Care, she was transferred to another where her cancer was confirmed. During this time, we spent every day with her, ensuring that her needs were met as the staff were run off their feet. In that time, we met with not one, not two, but five different teams, each focusing on a different aspect of her care. With each meeting, we had to repeat the same information as it seemed that not one of the teams was effectively communicating with the other, leaving us more and more confused. Now, it could be that they came to the realization on their own that my mother’s needs weren’t being met, but I believe the fact that my sister lost her ever loving mind may have had something to do with their sudden desire to have a team meeting. Be that as it may, her neurologist finally explained the facts surrounding her cancer and our options in a way that allowed us to make sense of what was going on. Sadly, it took one of us to blow a gasket before anything was done.

Next on our journey with this crappiest of diseases was bringing Mom back to her condo. During a 9-week period, we provided 24-hour care for our mother, with the exception of some home care that was eventually provided. Did you know that Home Care is not a possibility for somebody unless they have a person living in the home with them? Now, my mother is a widow having lost my father five years ago, so this wasn’t going to be an option. Fortunately, I have an angel for a daughter who packed up her belongings and moved in with Grandma. But I question what this budget-cutting province does for those poor individuals who are not blessed with family members living in the vicinity who are able to support them while they are dealing with a cancer diagnosis. What the hell??? The upside to this story is that the home care aides were lovely human beings and made Mom feel extremely at ease, which isn’t an easy thing when you feel awful and strangers are now in your home. However, a family member was always there during the day and overnight so that Mom could spend as much time as possible in her home.

Now, to navigate this crazy system, we were also assigned a Palliative Care Coordinator, but we soon learned that coordinating wasn’t really part of the job description. This forced us to advocate for Mom regularly, much like a full-time job. Throughout the past 11 weeks, information wasn’t shared with the team in a timely manner, so that we had to spend an enormous amount of time following up on requests for support, equipment and meds, picking up, delivering and organizing Mom’s care ourselves, so much so that I question the coordinator’s purpose in this situation. As an example of her ineptness, Mom had requested to be placed in Palliative Care at a local facility because she was deteriorating at breakneck speed and saw how much her care was impacting us both physically and emotionally. That said, she was kept on a nice hit of hydromorphone on a regular basis to ease her pain. Now, when a bed became available at this facility, our coordinator called and asked to speak to Mom. Not knowing who the person was on the other end, the home care aide passed the phone on to her. In her drug-induced state, Mom indicated that things were going rather well. So, in her infinite wisdom, the coordinator cancelled Mom’s request to be placed in palliative care. Again, my sister blew a casket, because what person in her right mind will base a decision on a conversation with a person who is higher than a kite??? This was enough to get Mom placed back on the waiting list and lo and behold, two days later, another bed became available. Now, I was on the receiving end of these calls from the coordinator, and within 10 minutes, everything seemed to be in place. Yet, she called back once again to inquire as to whether or not we wanted the hoyer lift delivered to Mom’s condo to help with her daily transportation to and from her bed. Now, given that Mom was now being placed in palliative care, and the coordinator was the same person who had just made that confirmation, it would stand to reason that a hoyer lift would no longer be necessary, but what do I know???

Then, there were the regular requests for pain meds and meds for mouth sores that were developing because of steroids that she was on to ease her swelling around the tumour. Did you know that Palliative Care is designed to provide pain relief for symptoms directly related to the cancer, but that the family doctor is expected to prescribe meds for things like thrush, a lovely little side benefit to steroid use? Who knew??? Now, my mother’s family doctor of close to 30 years was not of the same mindset, and let us know that now that Mom was with Palliative Care, she was no longer her patient and as such, she would not be providing any care for her. Welcome to family medicine in Manitoba! This then involved a few very direct conversations with our coordinator, as we needed support for Mom that we were having difficulty getting, and a Palliative Doctor came to the home. However, given that he had just met her for all of five minutes, he did not know her history. As such, this involved more repetition of the same information…a bit like an LP stuck on the same few notes! But, we did receive some support to deal with her pain, albeit a little late.

Now, Mom has spent close to two weeks in Palliative Care. The staff are warm and gentle, but she rarely has the same nurse attending to her needs for more than two days at a time. This means more repetition of information, because not everybody is up to speed on her chart. The fact that she doesn’t speak much any more, and when she does, it is extremely difficult to understand her, means that we need to be there all the time to advocate on her behalf. Today is another example of how frustrating this process is. The staff that have come to know her understand that she doesn’t complain and is ridiculously stoic in her resolve to handle the pain on her own. Yet today, she was suffering at an extraordinary level, so her attending nurse insisted that the on-call palliative doctor spend time with her. However, he was reticent to prescribe pain meds for her because he wasn’t sure if the pain she was experiencing could be directly attributed to the cancer, or perhaps something like old age. Here’s a news flash!!! She’s dying!!! Who the hell cares if her stomach pain is related to the fact that she is bed-ridden and has nothing to do with her brain tumor??? I repeat…the woman is dying. We treat dogs better than this!!!

Now, the capper to our week was a letter that we received from Autopac because my mother did not renew her license. Why? Because she is dying. So we contacted a service representative with this fine establishment to advise them of her diagnosis, which explained the fact that she had not followed through with a renewal. This individual’s response to us was that we needed to provide proof of Power of Attorney and diagnosis before April 1st or her lapse in renewal would be sent to a collections’ agency. Love…love…love the callousness and extraordinary stupidity of people!

So, let me just say that the emotional upheaval that comes with watching your mother waste away before your eyes is physically, emotionally and mentally draining, and on a whole different level of suffering. Having to navigate the ridiculousness of this health system to ensure that her last few days and hours are as peaceful as possible is beyond anything that I could have ever imagined, and only adds to the grief. Today, as I listened to this fool talk about her aches and pains, I was angry…angrier than I have been in a long time. Nobody deserves to suffer under these conditions…nobody deserves to die in pain. Yet, our reality is that it happens. But Sweet Mother, the system should be better at supporting those having to go through it. I believe that we can do better…in fact, I know we can.

Now my rant is done.

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7 thoughts on “We Need To Do Better…

  1. Yes, the entire system needs to do better. I’m 40 years old and I have stage IV metastatic breast cancer. I will be in a position to need palliative and likely home care at some point and stories like this make me extremely thankful for a large supportive family who will blow gaskets if they need to. It is, however, simply horrifying that this kind of frustration occurs and requires that much emotional commitment just to get the promised care. I’m so sorry for your experience. Love and light to you and your family.

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    1. Thanks for sharing. I am so very glad that you have a support system that will have your back when needed. It shouldn’t be a necessity when you are going through this, but we have learned the hard way that having people in your corner is the best way to get the care you need. Thinking of you…

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  2. I can not believe all you have had to go through. I have been so angry with the system in the US and thought it was better in other countries. I feel like so many people might survive this awful disease if the medical system would get their acts together. My heart aches for your family – I wish I could take the pain away somehow.

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  3. My deepest sympathies to you and your siblings as you walk through this with your mother. I can only hope someone in that medical field you are working with will learn something from you,

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  4. Thank you so much for taking the time to write down these familiar frustrations that many families feel and often can’t articulate. People are usually too stressed to communicate their experience. Families often go through these frustrating experiences feeling totally alone and think it is only them that spends everyday fighting to get good care for their loved one, in the midst of a jungle of obstacles.

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