← Return to Caregiving taking its toll: Stage 4 Glioblastoma & Lymphoma

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@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?

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Replies to "@saintdijo , You certainly are a saint given the work you've done all these years, and..."

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…