So yes I understand what hospice mostly means, ive looked it up and read some things about it but the situation my grandma is in isn't necessarily hospice...? however, the first place we found that would take her at a somewhat fathomable price , in a nearby city, is requiring she be under hospice care before they can accept her. I have spoken to the representative that places people there. They are still going to care for her wound, and her medications... however she needs to be evaluated before her doctor will put her under hospice care. im wondering will the doctor approve it? what if they dont? is that possible? shes been doing okay with getting in and out of her chair, even trying to stand sometimes... she was never keen on physical therapy but if she had done that more she might have started walking a bit more. she can stand with a walker and someone holding her up, maybe take a few steps... but thats also dangerous because if she starts to think she can walk she can fall and injure herself. anyway-- im just feeling uneasy about hospice being the only option, some days she seems so hopeful and well. some days the total opposite. im worried she will decline much faster in a home. they said its boarding and lodge?? what does that mean?? my mom is the one to make the official decisions but im the one who knows what's going on with my grandma and I answer all the questions and make all the day-to-day decisions. On paper my mom is in charge but she really just asks me what I think. it feels like a lot of responsibility. is putting her under hospice care more of a technicality to get her into this specific home? should we be looking further? its the cheapest ive ever heard ($2500 vs 5-7K) and its not in town but not too far.... I just have so many concerns being the one shes closest to, being the one who's created the home routine and system we have together, and then sending her off somewhere where it'll all be different and new. with her dementia and everything she gets angry at new/different things, she might start refusing things like she did in the rehab facility. what if they never get her out of bed and her bed sore goes back to stage 4? bringing her home is how we got it to stage 3, with her not being in bed all day + me and the nurse tending to the wound. I would much rather find someone to come in and just give me some days off. maybe I wouldn't be in such a depressed-doom state if I had that relief. the person I spoke to about her needs and behavior was asking if she takes anything to go to sleep... she was prescribed something to help her sleep and I told the doctor im not using that anymore as it made her daytime groggy and bedridden. she hasn't been on it for about 2 months and she seems better without it. I just dont want this place asking to put her on meds like that.... I am not well versed enough in any of these things to be the main decision maker, and with my mom it's always fallen on me to advise HER. sorry for another long rant but I have so many things on my mind everyday with this. her income is very low just social security and a small pension. being home she pays utilities and groceries from her account. we cant really afford to pay someone to come in and give me time off is why I asked my mom to look into a home. but maybe its the wrong decision. im just not sure of anything right now. we have a doctors appointment to evaluate her next week. im hoping to get some answers and some ideas at that time. thank u guys for all your responses recently. not many people I can discuss this stuff with...
Cwillie is correct. In the USA there is now a gaming of the system where Hospice is concerned. And it is a very dangerous game indeed. Hospice is being used where it should NOT be.
In pretending that someone is wanting/getting end of life care in order to get a bump up in caregiver check-ins, medications, equipment and etc, an MD is LYING and saying that the patient IS at end of lie.
And Hospices take that lie for TRUTH.
Consider how many come to forum claiming "They KILLED my grannie" with medications she didn't need.
Often these folks don't understand/accept that Hospice is end of life care. The person is being exited out gently because OUT is where the person is headed. Hospice personnel are told to be/may be VERY LIBERAL with medications.
The goal isn't cure.
The goal is NO DISCOMFORT. Sorry to be literal here, but THE GOAL IS DEATH.
And that, from your postings, doesn't seem to be your goal. You recognize the age, the condition and the possibility. But you are still thinking in terms of treatment. Of "getting better".
I think you're overwhelmed. I think it's not possible for you to take on this burden of "advising her" without feelings of inadequacy, guilt, etc. Unless I were a nurse manager here, I would not take this on.
You admit you are feeling very uncertain and helpless.
You shouldn't be having to make these decisions or handle this, because WHATEVER happens here you are going to end up kicking yourself for things that are
A) Not in your control
B) You shouldn't have to advise on or handle.
It may be time to call in social services help here, or tell grandmother that you honestly don't have a clue what to advise here.
I am so sorry. I wish I could think of some fix in this and I cannot. I think that your own taking on of something too big for you (maybe for ANYONE) to take on is going to overwhelm you. This has been posted under CARE DECISIONS, GRIEF, GUILT and HOSPICE. Well said. There's few answers to end of life and end of life care that exist other than acceptance. Sometimes things cannot be fixed to anyone's satisfaction. I wish I had an answer for you and just simply do not.
And of course they can stay under hospice care for longer than the 6 months, but your loved one has to continually show decline in their health status.
So if your grandmas doctor doesn't believe that she will be dead in 6 months, then they can't legally approve her for hospice care, and to be honest, it doesn't sound like to me that your grandma is ready for hospice yet, but I could be wrong.
But bottom line grandma now needs to be in a facility where she will receive the 24/7 care she requires. And since it sounds like money is an issue she'll have to apply for Medicaid to pay for her care.
Best wishes in getting this all figured out.
If you pass care over to any agency, you really need to go along with their routines. Many places do provide medication for night-time sleeping (so do most hospitals for inpatients), most provide drugs for angry semi-violent behavior. GM’s “income is very low”, and you “can’t afford to pay someone to come in and give you time off”. In-home nursing care is much more expensive than a facility, even an expensive one, because shifts can’t be shared between several residents. Bluntly, only very rich people get 1(or 2)-on-1, 24/7 care just the way that everyone would like it. If that upsets you, remember that it's the same for education - the children of the super-rich get options that most people can't afford.
Look for the best that is practicable, don’t break your heart over ‘perfect’. Try to see that GM is content and as happy as possible for end-of-life with many health issues.