Could be tips for hospital, rehab or care home. Local or long distance.

Help Me Help You

My Story:

My father stayed healthy and active, mentally and physically, almost to the end of his 93 years. He went in hospital for routine tests, hours after finishing cutting the grass, the day after weed whacking the yard. He drove himself to the doc for his doc's requested visit, then drove himself on to the hospital at his doc's request. He was proud he had passed his driver's test yet again in May and his license was not up for renewal again til his 98th birthday. And yes, he still drove okay, and was smart enough to not drive in bad weather, or on dark "no moon" nights.

In a week after he went in hospital, he was released to go home (I got a physio staff member to block him from driving home high on opiates in Friday rush hour traffic). In 18 hours he fell five times and went back in, by ambulance. Week two, we went from discussing "releasing him to skilled rehab for a balance issue", to "maybe assisted living", to the few last hours of his life, the "hospital trying to make him go to hospice"

Two weeks later, I still don't know a cause of death.

Those "care" contracts: You had better 1) like to read legal clauses, and 2) read fast! Contracts for the facilities averaged 35 pages to a high of 100 pages. All the contracts had "illegal" clauses, according to the State Omsbudsman office. All the facilities "offered" to let him come in first, and "we'll get around to the paperwork later". (nice: placid compliance - - acceptance of the contract by using their services).

I believe we deserve the right to see these contracts in advance, and to take these to an attorney of our choice, to help us to understand what we are signing. No more "hidden clauses" - buried on some page 18, for example, where we have signed over someone else's assets, because we didn't understand what we are reading....or we signed away third party others' rights to object, because we didn't understand the facility couldn't ask that. Or surrendered the right to sue, because the facility buried a clause about "arbitration only" or worse - "forcing us to give up the right to sue altogether."

I believe we stand together entitled to understand how "hospitals" and "care-systems" work.

I believe that if we contact Patient Care - it is reasonable to expect a call back in 24-48 hours during the week - - not many days later.

I believe we are entitled to know what level of authority each hospital or care professional has - and more importantly "doesn't have". I believe we should know when an intern or resident is signing as a "doctor" - and to know that he/ she shouldn't be doing that.

I believe we have the right to know - to have it disclosed - when our loved one is being "passed from doctor to doctor like a football - and WHY".

Diabetic's charts should be labeled "Diabetic". No excuses.

I believe our loved ones in care have the right to have monitoring - and if they fall - they should be found in a reasonable period of time.

I believe our loved ones should not be subjected to a hospital or care facility employee "hitting on them" when they are inpatients.

I believe it is time we "took back" our right to understand, be informed, and to know what and when specific care items are happening, when our loved ones can't care for themselves easily. Yes, I realize we can't "get in the way of care" - but we also must be part of the care-giving team, not someone that hospital or care staff treats like they are "patting us on the top of our heads".

We have the right to be part of the decision-making team to protect our loved ones interests.

My professional background is in creating community and personal solutions. I make a study of the existing system, identify gaps in services or communication, then set out to create a positive creative new system that in this case - individuals could use - to help them be "better prepared" before launching into becoming a local or distance caregiver to a loved one.

Plans for a Training Event

If you think there is a need for better informing family on how to deal with hospitals, care facilities, skilled nursing, hospice, to that we all understand them better and get more in sync with "how things are done" - please let me know.

We are designing a test event, to see if this is a program that should go nationwide. It would include information on how to raise funds for "aging in place", or "obtaining support services" for people on disability, seniors, and elderly. And - it would include information on grants and loans, and other benefits available by state, federal or VA for making home modifications. This would program is being designed to cover US and Canada.

We may not be able to change THEIR system, but we CAN create our own system, that WE use to protect our loved ones in care.

Join me! Share your experiences. Together - let's make a difference. Our loved ones deserve to know they have trained family members or friends who know how to Advocate for them when needed.

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You're absolutely right my sister. There are many in this forum for whom caregiving is rewarding in many ways, particularly when the parent -- like your Dad -- are able to fend for themselves to the last breath.

No silver bullets when caregiving; no formulas; no custom-fits. This forum is a blessing. We try to comfort each other, although a few individuals don't realize they're lashing out at people who are just trying to help. Conflicts of personality do emerge every now and then, but all in all the AgingCare website is a superb tool. We collaborate, commiserate, vociferate, or just drop by when the sleep aids and warm milk don't cut the mustard. It helps caregivers stay sane when the line between the real and imaginary blurs.

It's been an honor meeting you.

-- Abracao.

Thanks, Eddie. Wow - do I hear you. For me, 3-1/2 years ago, it started out to be a one-week project. More and more kept getting added fast.

What I would "add" - - "Not all 'caregiving' looks like a health -related issue. For me, I had to help my father with a legal matter - doing extensive research in an area of law few attorneys ever think about or practice, when that ended it became "project management" - sourcing contractors, getting in repair quotes, negotiating terms, etc. Lot of contract reading, and researching.

I was lucky - my father was managing his own health issues up til almost the end - two weeks.

I can only imagine what those of you who have to / or choose to manage the healthcare direct care aspect as well. Wow - you are the Angels on earth!

I agree - this website is amazingly helpful - what a support network.

Any other only kids out there -- - ??? Wondering what you all are doing...

1. BUILD A SUPPORT NETWORK FROM THE GET GO -- Caregiving escalates, and it's crucial to have a source of strength other than your own. Even if you have delusions of superhero or your ego doesn't allow you to admit you're unraveling.

2. MAKE A REALISTIC, COMPREHENSIVE SCHEDULE -- Call a kith & kin meeting and see who can do what according to his/her ability.


4. FOLLOW THE MONEY -- Keep detailed proof of expenses, and avoid living high on the hog.

5. TAKE "ME TIME" -- Reach out to your support network ahead of time when you need to get away from it all.


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