Moms skin requires constant dressings.. due to drainage and bleeding. To most she acts "normal" but with me she is anything but. Vitals good eating very little, sleeps or in bed most of the time. Very feeble etc. but still toilets independently etc. some memory and confusion issues. This cancer just has me at a total loss as it is rather rare.
I've never dealt with this situation in any form before so I'm kinda lost as to what to expect next. Hospice says she's minimally declining and I see that but I simply want to prepare myself for what's coming. I have a gut feeling that this is going to be a very long and painful journey. I hate the thought of that but I truly believe the worst is yet to come. I'm single and only caregiver. Just any insight as what to expect next would be greatly appreciated. I'm simply trying to mentally prepare...
The primary duty of Hospice should be to alleviate mom's pain and anxiety. If she elects to persevere until the natural end, I think OP needs more help in dealing with dressing changes and other issues that will likely arise.
For any interested in a fascinating but quite awful Breast Cancer Memoir in which a brilliant woman research MD hid her condition from her MD hubby until she had an inoperable football size tumor of this type it is the book In Sickness by Barrett Rollins. I will never forget this book nor his caretaking journey.
The goal of Hospice is to make sure that your mom is not in pain.
If pain can not be managed at home she can be transferred to a Hospice In Patient Unit (if your Hospice has one or to a Hospital that they have beds in).
She can remain there as long as necessary to help manage pain, symptoms.
PLEASE talk to your Hospice nurse and ask what the typical progression is and what you should be looking for.
My guess is mom acts "normal" with everyone else because she wants to be "normal". With you she can be herself.
If there is anger, frustration, agitation, anxiety, depression there are medications that might help, talk to the Hospice nurse. Any and all of those feelings would be "normal".
Also if the dressing changes are more than you can handle you could also talk to the Hospice Nurse about that as well. They may have a Wound Care Nurse that could possibly do some of the dressing changes. If the CNA is there 2 or 3 days a week it is possible that the CNA could do a dressing change on the days that she/he is there.
Did anything we said then help you at all?
You have told us that your gut feeling is that this will be a very long journey and I think you may be correct if there is no metastasis.
I read a memoir recently about a woman doctor who let her cancer go, self- treated, hid it from her husband, and ended with a football size inoperable oozing cancer such as you mention, and metastasis to almost every organ. I recommend it to you:
An "Excerpt from Barrett Rollins’ ‘In Sickness’ — Harvard Gazette" is online.
I sure recommend the book so you don't feel so alone.
Do you know if there is spread for your mom, because if not, with these things inoperable, life can go on but with the quality so poor that all involved begin to pray for death?
The dressing changes are horrific and don't last. In the case of the husband/doctor of this woman there was adequate money and caregiving help, but the journey was still a crucible.
I can only recommend that you lean on Hospice, and that when this becomes too much you turn to an in facility hospice or in facility SNF. This isn't doable. For us nurses these cases were often so awful simply to witness that we entered the room with a companion nurse to do dressings. The odor of the seepage could not be stopped nor controlled.
I am so very sorry.
Can you tell us of any changes in the last month or so?
My heart goes out to you and your. I will never get over the memoir's description of the husband's shower and tub the storage locker for the tons of dressings that had to be changed every day, and lasted almost no time at all.
How does you Mom feel about this. Were it me I would now be considering VSED (voluntarily stop eating and drinking) to make my final exit. There are some things that are too painful and impossible to get through in life; this is inoperable and uncurable.
She may not be like me, however, and for some the fight goes on to the very end. And that is an individual decision.
I'm so sorry you and your mom are going through this.