Caregiving taking its toll: Stage 4 Glioblastoma & Lymphoma

I’m not sure of requirements, but if he is considered end state, doesn’t he qualify for admission to a hospice unit? They are equipped to meet his needs - and your own health must be at risk under these conditions.

admission to a hospice unit - not even SURE they have such a thing here in Oklahoma - especially the very East end of OK......I am only 30 miles from Arkansas. I suppose IF I lived in OKC or Tulsa area it would be different; but I am 2 hours away from those cities. I agree my own health has been suffering......I have found I am not only a CAREGIVER but also a Case Manager, Wife. Housecleaner, Property Maintenance. Not sure how long 'end state' is since Cancer Doc put him on Hospice in Sept 2022......that's why I asked IF the pacemaker is the reason. I certainly thank you for your reply.....

Hospice eligibility criteria may differ from region to region, but typically hospice care is offered when a person has a life expectancy of six months or less. Sometimes when someone's condition improves, perhaps unexpectedly, they will be taken off of hospice care.

Hospice care can be delivered in the home where the patient lives, and in some regions, there are hospice facilities that admit patients for their care to end of life. Whether your husband is on hospice care or not, he is eligible for palliative care to manage his symptoms, including pain, to keep him comfortable.

@saintdijo, I'm so glad you came here to let off steam. Taking on the 24/7 job of caregiver in addition to case manager, wife, housecleaner, property manager and likely more, is enough to bring anyone to their knees. As @IndianaScott always says, "super heros are only in the comic books! No one is Superman nor Wonder Woman when it comes to caregivers. Just everyday folk doing super hero work as best they can!"

I added your post to the Caregiver Support Group (https://connect.mayoclinic.org/group/caregivers/) so you can connect with others like Scott, @angls64 @lemertens @ruthannray @una @crf who have experience caring for someone with stage 4 brain tumor.

Saintdijo, it sounds like you are getting little to no support within the community. Do you have options available to you to get someone in to help and give you a break periodically?

My heart goes out to you. You are doing the best that you can. I get it. It takes a toll on us caregivers. I feel like I have the disease as well. Posting on the caregiver support group as often as you can will be helpful for your stress levels. Just know you are not alone.

Oh my goodness I could just read and feel all of your sadness and anger, and grieving in your post. I'm so sorry your husband is in this sad state. My husband had stage 4 brain cancer at the age of 29! That was 15 years ago. He had a tumor the size of an egg in his cerebellum. His brain actually shifted to make room for the tumor. Apparently the cancer was embryonic because only 20% of adults ever develope this type of brain cancer. Modulloblastoma. He had chemo, radiation, and 6 hour scans every 6 mos once it was blasted from his head. He has been in remission for the brain cancer, but now has stage 4 esophageal cancer. I don't think it's the pace maker though my husband and I are only 45 so we don't know much about that kind of stuff, but maybe your husband is still fighting... I know it's heartbreaking for you. As a caregiver myself to my husband, I've never felt more useless in my life. Feels like all you can do is watch and wait. There are days I'm affraid to go to sleep. I do pray for healing over your husband, and peace that surpasses all understanding for you. Bless you both.

@saintdijo , You certainly are a saint given the work you've done all these years, and my heart goes out to you. I know it's not easy. I lift you up in my prayers and thank you on behalf of all humanity for being one of the caregiving heros that patients could not live without.

My mom died of glioblastoma multiforme 14 years ago, and my dad died last summer from mesothelioma at age 85. He lived about an hour from me, and I was his primary caretaker (2-3 trips per week) for most of that 7 month battle. My wife or her aunt started staying at his house 24/7 over the last 6 weeks of it, about the same time Hospice got involved.

Over those last few months, Dad was spending 20+ hours a day in bed. Even the smallest exertions like walking across the house exhausted him. His pulse-ox (O2) always looked good -- too good while awake and during a sleep study to qualify for Medicare-funded oxygen at home. His hemoglobin and iron always ran low, but never low enough to "qualify" for a blood transfusion. I put "qualify" in quotes because it seems to be a somewhat arbitrary doctor's decision. We couldn't even get him a _prescription_ for oxygen (despite offering to pay for it ourselves) until Hospice got involved.

I say this because as a cancer patient myself (non-medically trained) that there are various types and causes of anemia or borderline anemia that have different impacts on different people, but absolute exhaustion is one that I have experienced as well. And my own experience is that blood transfusions and treatments with oxygen in a soft hyperbaric chamber have provided me with temporary but substantial relief.

You might ask one of your husband's palliative doctors if ANY kind of treatment for anemia (from transfusions or other medications that improve RBC, hemoglobin, iron, etc) might improve his energy levels and quality of life (and by extension, your quality of life as well).

You might also ask his cardiologist if the pacemaker setting is at a good heart rate for his age and condition, rather than just a generic setting for the average patient. Could the rate be making him constantly tired, or not moving the right amount of blood if he's dehydrated often? (I don't know much about this, but I'm prone to asking questions, and sometimes that inspires a little more action from some doctors. Sometimes...)

Finally, the Hospice provider in my part of Florida did not offer a long-term facility for my dad, but they did have a program that helped. It was called a "Caregiver Respite" program where they could take him in for a week (when not in critical condition) just to give the caregiver a break. We never used this, because Dad didn't want to leave his house, and we were able to balance out the care with more relatives chipping in.

The Hospice facility did have in-patient beds that were available for the short-term, end-stage condition (expected to be less than 3 days or so, if I remember right) when the patient needed hourly attention and more "professional" care than the family could provide at home. He spent his last 24 hours there.

It wasn't mentioned in your post, but did your husband suffer any noticeable brain damage from surgery to remove the tumor?

Many long term care facilities (nursing homes) have hospice beds covered under medicare.
I have seen cases where a patient has had to have their pacemaker turned off towards end of life. It depends on the type of pacemaker.

It’s unbelievable the response to my post….FINALLY someone to ‘talk to’ who really understands! Don’t remember how I found you, nor the ‘guts’ for me to join here….but yes my Lord knows the how-to in helping. I have since asked Hospice about hospital care…I was right only the large OK cites have it.

As mentioned (several times) yes, it has been mentioned to relieve my stress to put him in a place for 5 days! My answer has been NO…why? It became very clear that for him it would transfer my stress to him being stress in such a move; I was not going to put him thru that, in fact I was totally afraid to do that. It was like deciding to push him over the cliff. He only wants (desires) to die here in the home. There was a day (2 weeks ago) it became apparent I could no longer give the care he needed…I told him that…he was SURE it was a way to put him AWAY ….i could see the fear he had. I backed now all the help that they offered him…..a day later he improved! Seems this Cancer goes by levels….go down a bit, then settles, goes down some more, then settles….My Life of understanding.

And no, being he is on Hospice there is no longer Cancer Docs being involved….i have no idea where this Cancer is growing; now his Lymph glands (he has it from head to toe)…..Heart Doc routine visits only…and he knows it’s useless ending (so much for caring). Btw his pacemaker is set at 60 if it’s goes below that! Long in tooth again

See below….i tried to answer everyone at same time…wasn’t sure how to add everyone

4 days before his surgery the tumors ruptured….surgery went as planned. Bio was taken - Cancer was confirmed. No noticeable difference in his personality afterwards. Then our lives changed…