An Unchanging Message

It’s been a week now since my Mom’s primary care physician broke the news to Mom that she’s at the end of her 15 year fight; the last 8 of which have been full-court-press. Being the skeptic that I am, I escalated the issue to her specialist at the transplant institute. I was able to get the specialist and the primary care docs to talk – at the last minute, so a consistent message could be delivered to us.

Unfortunately, that consistent message turned out to be the primary care doc’s message – it is over. He confirmed with the specialist that a transplant is not in the cards – my Mom has deteriorated too far to return. He indicated that she is in her last year of life. He said we would now move to comfort measures and stop running to the hospital as often. He is strongly advocating Hospice at this point and providing palliative care with medicine that will make her comfortable.

I interjected – ME – that in addition to making her comfortable, it will also shorten the window in which she will be able to conclude her business of life (visits with family and friends, making final video messages, giving away or assigning possessions, etc.) because with a combined end-stage liver/end-stage renal diagnosis, to make one comfortable means to induce encephalopathy – a great deal of confusion and disorientation.

I also added – ME – that these comfort measures would also shorten her life. The doctor agreed to both of those points, but still thought it best. I was disappointed that I had to bring those points up – it made the ‘sell’ seem a little less objective and a little too ‘hard sell’. It could also be that’s the way I want to see it because it isn’t what I want. How immature would that be!?

I think I am bouncing from denial to anger today – repeatedly. I was really surprised at the lack of compassion with which this message was delivered. His PA was in there ‘observing’ (I am assuming so she could learn how to deliver this message), and was equally as cold. Perhaps they have to be because of the emotion they are trying to fight off, or because they really don’t care. I don’t think it is the latter – I cannot believe that. My Mom does not seem to understand the full implication of what was discussed – and there is probably a fair amount of denial going on with her. This is where Hospice would be beneficial – they can help us navigate this rough terrain.

I am, for the most part, remaining detached today; detached with moments of grief. Combined with that is a fair amount of aggression; likely from a root of anger. Although I had a marvelous day, this evening after this conversation – people in cars were stupid – actually, people in general were stupid, I became impatient with about everyone and everything.

We’ll make it through this and I have a feeling as she continues to deteriorate and it becomes apparent that the only relief will be death that is when I will accept it and know that it is right for her. Until then, I’m sure we’ll be kicking and screaming. But, we’ll be throwing in a fair amount of ‘taking care of business’, just in case. That, in and of itself, has to be a gift. Not everyone is afforded the opportunity to close up shop.

I am so done today. I hope my message is better tomorrow.

- Blessings –

Avatar of Derek

About Derek

Mid-40s, single, Christian, IT professional living in the DFW area. I take care of both of my parents. I manage my dad's care, now on hospice, as he resides in a wonderful memory care facility. In her 6th year on the list, my mother lives with me while she waits for a liver/kidney transplant as the result of a needle stick at work that has now resolved to end-stage liver disease.I enjoy my two, two-year old Gray Tabby cats as well as the teeny-tiny Calico my mother brought.I am a vocalist, a gardener, and have recently discovered video editing and blogging.

4 thoughts on “An Unchanging Message

  1. G-J

    Derek, I was very sorry to read the news about your mother. Although it is a gift to be given that time and opportunity to do all those last things a person wants to do, it is difficult because of the reason behind it. In a way it is good that your Mom does not fully understand the implication of what was discussed. For you, it is probably much more difficult not only because you fully comprehend the information, but because it means the eventual loss of your beloved mother. Although we know it’s going to happen, we really don’t like to hear and think about that in advance.

    Hospice workers told me many times regarding my Dad that when a loved one is on hospice, you begin the grieving process before they pass away and experience some of the stages of grief in advance, much like it sounds like you were experiencing. And late in the day, when you’re tired, emotions tend to be heightened.

    Derek, you are being a wonderful, supportive son.

  2. Sharon

    I am so sorry, Derek. You have been the primary caregiver for so long, and this is your beloved Mom that we are talking about. After fighting for so long, it must be difficult to let go. The negative feelings are so understandable.

    My Mother-in-law is deteriorating from her cancer very quickly. Her time may be days or weeks. Hospice has been a big help especially for one of my sister-in-laws, her primary caregiver. You will find this true also. We will miss my mother-in-law when she leaves us, and we are sad about the prospect. We are trying to concentrate on the good memories, however. We also know that because my mother-in-law is a child of God a wonderful eternal future is hers. (Revelation 21:4)

    I am so sorry that the medical people seemed so cold. I think you will find Hospice to be a wonderful resource, however. Allow yourself to grieve, but also treasure these last months that you still have left with your Mom. At the same time do not beat yourself up, if you can not be at her side every moment.

    Finally, trust that you will be given the grace and strength to carry on. When she is no longer with you, you will miss her. I still miss my Dad who passed away in 1990. You will have a blessed future in God’s perfect timing, however. Remember also that we also are here for you.

  3. Avatar of DeniseDenise

    Hi Derek–Oh, gosh, it’s hard to hear such news and even worse when it’s delivered in a way that seems devoid of compassion. You are doing such a wonderful job advocating on behalf of your mom. You can follow the doctor’s suggestions and then, if doesn’t seem in your mom’s best interest, you can always discuss other options with Hospice.

    I”m so glad you shared this with us. I hope you were able to sleep last night. Peace and comfort to you and your parents.


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