JacqueGs whereabouts - Update

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jacqueg

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Realized it's been forever since I posted anything about my situation.

My brother is still hanging on. About a month ago, he had a hospital admission due to throwing up "coffee grounds", which is a sign that blood was in his stomach. I was taking a break in Tehachapi when I got the call, staying at a truck stop and hanging around town. Scans showed no sign of bleeding in his upper GI tract, so we all thought he had been swallowing blood he was coughing up from his lungs. After 4 days, hospital discharged him back to his nursing home, and we put him on hospice status.

Docs were/are still unable (unwilling?) to tell us why he has deteriorated so much following his successful radiation treatment. Oh well. I promised him after that GI scan that there would be no more scans/MRIs. etc. He is too weak to sit up comfortably, and transporting him to the hospital for exams was a painful ordeal.

When we first signed him up for hospice care, I did not expect him to last more than a week or two. But yet, he is still here. He is pretty skeletal from massive weight loss, and he says he is in pain most of the time. He gets morphine 3x/day, and also gets smaller doses as needed. I am sure he is addicted by now, but who cares.

He never did talk much (he is an asperger's person), and talks even less now. I am sure he knows he is dying, although he never says as much, and I don't want to be the one to broach the subject, since I have no idea how he will react. One of the consequences of being in hospice is that he is no longer on the laundry list of psych drugs he had been taking. He went through some withdrawal, but now seems to be clearheaded. I'm not so sure that's a good thing, but...

Me, I am spending my time in cheap motels in Orange County. With the upcoming heat dome, I might as well stay where there is A/C and I am close enough to visit every day. It's as grim as it sounds. I can't begin to tell you how penned up I feel. But he has no one but me to visit him, so I stay. Once the heat dome dissipates, I will most likely head north to Tehachapi again. It's about a 3-hr drive between here and there, I can come down here to visit him for a couple days, then head north again. (Rinse and repeat.) I'm so much happier staying at the truck stop!
 
Realized it's been forever since I posted anything about my situation.
Appreciate the update. "This" is hard--really hard. I'm sorry for you, but glad for him, that you're there.

Doctors, IMO, are ill-equipped to deal with mortality themselves, let alone help others. (Nothing personal against them or their profession, but many are just not skilled in making decision around it or providing support to those who must.)

Do you find the hospice team helpful aside from the most practical aspects? (I have next to no experience with end-of-life scenarios, and just wonder about your experience.)
 
Appreciate the update. "This" is hard--really hard. I'm sorry for you, but glad for him, that you're there.

Doctors, IMO, are ill-equipped to deal with mortality themselves, let alone help others. (Nothing personal against them or their profession, but many are just not skilled in making decision around it or providing support to those who must.)

Do you find the hospice team helpful aside from the most practical aspects? (I have next to no experience with end-of-life scenarios, and just wonder about your experience.)
Some doctors are great with end-of-life situations. But cancer doctors - well, IME, they are highly just-fix-it-oriented folks, and it's on to the next in hopes they can help that one. It's their nature I think.

Hospice in a nursing home in this case means there is a special contractor who visits my brother about 3 times a week to assess his needs and condition. They work closely with the nursing home staff. When I thought my brother needed his morphine dose upped, the nurse here called the hospice company, not a doc, as being in hospice means they are following the hospice protocol. My brother has lost his appetite, and the nursing home is using high-calorie supplements for what he does manage to eat as directed by the hospice company. The hospice company has both clergy and social workers on staff should they be needed.

I will say that David being a California resident has meant great care from Medicare and Medicaid. We haven't had to worry about paying for his care. My brother has a Special Needs Trust, and when he finally does die, California will get the remains. It won't come anywhere near repaying what they are spending on him.

I spent several years working in nursing homes when I was younger - a good 40+ years ago. Things have sure changed. Thank goodness.
 
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Thank you! I am trying to learn more about hospice and other end-of-life options and appreciate the willingness to talk a little about your experience.
 
Thank you! I am trying to learn more about hospice and other end-of-life options and appreciate the willingness to talk a little about your experience.
Just a personal experience. The more morphine the longer the patient stays alive I believe. My dad went 9 days on morphine with no food or water in hospice. He was somewhat responsive up until the last 24 hours The nurse told me some last up to 30 days. Nothing good about how we treat the dying at least in the state of Kentucky.
 
May you soon find some emotional healing time with getting back on the road to your nomadic life and friends.
 
This has been a hard road you both have had to travel, please take the time now to do what you need to do, to grieve and heal yourself.
 
Glad to hear you are on the road again! May the mountains. forests, rivers, lakes and ocean bring you great peace and joy.
 

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