She wants to be home...

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krisnanbrandy123
krisnanbrandy123 Member Posts: 66
edited June 2014 in Employment, Insurance, and Other Financial Issues

My cousin is 40 yrs old. She has metastatic brain cancer.  (I am her first cousin and through her found out I am BRCA1 positive)

According to her doctors her tumor is not receptive to treamtent..she has undergone two brain surgeries and so on.    At first they gave her a few days and now possibly months.  This has been a heartbreaking nightmare for everyone who loves her but obviously most of all for my beautiful cousin. 

My question...She wants to be at home.  She has no long term care insurance but worked full time and has health insurance currently.  There are financial resources but not sure whether there is enough for round the clock care for many months.  Has anyone been down this road with a loved one?  Do you have suggestions to point me in a direction?   The family is extremely saavy so they would have already checked into her health insurance options and things along those lines. 

So grateful to this group...Thank you in advance for any suggestions. 

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    Hi krisnanbrandy, I am so sorry to hear about your cousin. I am not sure about this, but in my experience one you opt out of 'treatment' (that is treatment undertaken to prolong your life), the doctor can recommend you for hospice care. Now this may be very different based on location, but I know when I was taking care of my dad - we could have hospice care at home or in a facility. We opted for at home (there is an option to temporarily place the patient in a facility for relief of the caregiver as well). This kind of at home hospice would not work (or wouldn't have worked for our situation) without me being at home with my dad - you can't just rely on hospice & they won't be there 24/7. What hospice will do is come in and make an assessment of the home & order any aids that the family needs like a hospital bed, a portable toilet, wheelchair or walker etc. A healthcare nurse will come out to the house and coordinate with a doctor (how often they come is based on need) - they will check the level of pain & work with the doc to make sure it's under control, monitor vitals, check things like swelling etc & help the family with suggestions of how to make the care easier. As it turned out with my father, by the time we had hospice 'set-up', the end came quite quickly and I was glad that it did. Hospice enabled him to die how he wanted - in his own home surrounded by his family, his paintings, and his music.

    I found hospice to be a great thing (and medicare covered it - I do not know about other plans), but I (along with my brothers and sisters) did have to do a lot. One night my father fell and could not get up, I couldn't pick him up and called hospice & they told me what to do (call an ambulance because they will come out & just help get the patient back into bed). Once incontinence became an issue, that was difficult, although luckily it did not happen until the very end because it was extremely disturbing for my father.

    These are hard things - but I can say that I am very happy to have been able to be with my dad at home and helping to take care of him. Somehow it made his passing so much easier. ((((hugs))))
      

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  • Susie123
    Susie123 Member Posts: 804
    edited February 2014

    My dad was in a similar situation, not brain cancer, but in a situation where we wanted him to be at home but needed help taking care of him at home. Our Dr discharged him from the hospital to in home hospice care. He lived for about 14 months. A home health aid came in every day, a RN came by several days a week. We never had the problems with hospice that Ziggypop had. When we called they came out immediately. Dad fell out of bed once, we called they responded immediately medically and then installed a thick rubber mat along dad's side of the bed to help cushion the fall if it happened again. They were there 24/7 anytime we needed them, for anything, no matter how small. They not only arranged his meds with the dr but also stopped by walmart to pick up his meds. They also had people who came by just to sit and visit with him so the family could have time to go shopping, or just leave for a while to regain your sanity. (Dad also had Alzheimer's as well as the heart lung issues.) they also had a family physiologist that visited from time to time. I'm sure hospices differ from place to place, but dads was United Hospice. They were great, and patient. At the end, when we had a hard time letting go, mom would have him admitted to the hospital and taken off hospice so he could be treated. Then when he returned home they would put him back on hospice. They didn't judge or lecture, just support. Some of his caretakers would come by to see dad when they were not working, just to sit and talk. We had a very positive, help you with anything, anytime, experience with hospice. Also, as ziggypop said, Medicare covered everything at 100%, but I'm not sure about private insurance. That might be an option to check in to.

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  • krisnanbrandy123
    krisnanbrandy123 Member Posts: 66
    edited February 2014

    Thanks so much for your feedback and personal stories.  She is in a wonderful hospice but she wants to be at home.  Her family is wonderful and caring but the person in charge of making decisions does not want to have to do any personal care at all.  This is one of the issues.   There would need to be the assurance that 24/7 care was in the home at all times and this does not seem to be an option unless it is paid out of pocket. 

    The comfort is that she is surrounded by friends and family night and day at the facility. But when I visited she just keeps saying she wants to go home :(

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  • juneping
    juneping Member Posts: 1,594
    edited February 2014

    is it possible ppl can make some short term arrangement to take turn stay home with her?

    i could understand that. i had a MX and i needed to stay at the hospital for only one night. i hated it, the radiator was so loud the whole night, the bed was buzzing every 5 minutes, my neighbor was in pain the whole night. if she only has a few months left, i think her family can make some short term arrangement to grand her the wish.

    i've heard someone could get disability bc he needed to take care of a family member. but it really depends on what kind of plan that is.

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