Don’t want to derail the great link above, but thank you to all who sent out good vibes and prayers for my friends. Two of my friend’s family members have moved peacefully into the next realm, surrounded by their family. As good a death as I can wish for myself . One is still struggling. Wishing for peace.
@esobay, how often is your mom having loose stools? Have they done a stool culture for C-diff? Has she been on antibiotics within the last few months and did the loose stools start after that? Does she take probiotics? I ask because loose stools can start weeks after taking antibiotics and also cause dehydration and mental confusion.
Thanks for pointing out those things ECmotherx2. She hasn’t been on antibiotics for a long time. I think/thought it was a change from getting off the pain pills for her arm. since she was constipated from the pain pills.
Another reason I am happy to have hospice help because they note these things and are more on top of them. The AL place didn’t seem to bring them (toilet accidents) to the RN’s attention. But the hospice RN hears all about it.
She is actually more lucid sounding than she has been for a long time. I think it is just her body and mind being somewhat disconnected now.
Am I wrong, or is it possible to get on a palliative care only regime without going on hospice-- that is, without being declared terminal? It should be!
It seems to vary based on the program and maybe the area. Where I’m volunteering, the current wording is, “…regardless of their prognosis. The goal of Pallliative Care is to improve the quality of a patient’s life.”
Hospice is pretty amazing. Every single person I’ve met is attuned to the needs of patients and families, gentle and attentive. I hope anyone dealing with this finds the same.
Hospice is tremendous, no doubt. But I’m looking ahead several years, as my mother’s dementia worsens. At some point, probably, she will not be physically terminal but she will be in a state where we will want comfort measures only. And I’m not sure how easy it will be to get that.
Yes, but it depends on the programs in her area, how they are defined, what resources they have. A family member can ask now, see what exists. Here, palliative can be in the home, hospital or nursing home.
My mother is on “comfort measures only” at the nursing home, but is not on hospice care. She gets her regular daily meds and gets treated for things like UTI’s, but will not be sent to the hospital.
Regarding hospice care, the SW at the nursing home wanted to put my mother on hospice 1.5 years ago when she was losing weight. I firmly believed her weight loss was the result of the new thickener they were using. Once I presented my case against that thickener and got them to change the thickener they were using for her, her weight stabilized. It’s stayed stable for the past 1.5 years. I haven’t been that impressed with the hospice workers I’ve seen at the nursing home. It may just be a function of the hospice agency they’ve contracted with. At the point I think my mother would truly benefit from hospice care, I’d have no problem instituting it, but I suspect that the nursing home gets a finder’s fee, or something comparable, and is quick to recommend hospice even when it may not be called for.
Develop a relationship with your family member’s PMD. Make sure that you or another family member is listed as the legal health care proxy, (or whatever the legal term is for the state in which they live). If possible, set up a phone call or visit with the PMD as health conditions arise or health deteriorates. Are their “end of life” documents in place. Discuss medications, reducing meds or what “next step” or options are. @lookingforward is right, each state and agency has different rules and conditions for hospice. I work with my mother and my aunt’s PMD. We discuss meds, have reduced or removed medication, talk about “what ifs”, how far would or if we go to test, treat, etc. I had him “take over” for other specialists. Both of them are DNR, with bracelets, have underlying cardiac and diabetic disease plus dementia. I have a supply of sterile urine cups and standing orders at a local lab as my aunt gets frequent UTI’s. The only reason we treat, and at a lower dose of antibiotic, (hx. of c-diff), is because she becomes aggressive and agitated. Even then, I have an order for Ativan and we try that first for a day or two. The MD will only see them if a new situation should arise and even then, I usually have a phone consult with him first.
At this point, I do not have them followed by hospice because we can manage things well. If that changes, the PMD said to call him and his office will set it up asap. Pain control is not an issue, their home health care aides are amazing with providing 24 hour care, nutrition and house keeping. We are blessed. It has been a very long and difficult road.
Shellfell’s comment about a finder’s fee got me looking. I really think a move to hospice help is not so much about turning a little profit on a patient as unloading some of the responsibilities from the NH. The hospice I know is non-profit.
But I see this and it makes me realize there can be different sorts of “hospice” support. http://www.hopkinsmedicine.org/healthlibrary/test_procedures/urology/types_of_home_health_and_hospice_care_providers_85,P00613/
I suppose, in some situations, it could be that, say, hospice “care” is being provided by some source other than a non-profit. I guess this means we need to be aware, in our own situations.
Yes, @lookingforward so true. The key is finding what will work best for the patient, family and financial situation. We went through a large number of health care agencies for my aunt. She is very difficult to deal with, and we could not find an agency that seemed to provide a long term 24 hour worker. We found my mom’s aide through an agency, but they were not able to provide someone who met my aunt’s needs. After trying about 9 different agencies, we ended up hiring the sister of my mom’s aide and paying her directly. She is a CNA and has been with us now for over 2 years. It’s a pain to do all the taxes and reporting, (works out to cost the same as if we went through an agency), but she is an angel with my aunt, I couldn’t ask for better care.
It is very hard to negotiate through all of the options available. Some of the posts on this thread have answered many of my questions, sending a big thanks to all who so graciously take the time to share.
For profit hospices raise just the kind of red flags for profit colleges do in my mind.
We used to only have one hospice in our area. Now I see several, at least two of which are for profit. I hear uniformly good things about the long-standing hospice, and decidedly mixed reactions to at least one of the for profit hospices.
For profit and hospice do not seem like a good combination.
The adult family home mom is in will allow for in-place hospice care.
Another dr appt today. Mom received a referral to a wound center to deal with a sore that won’t go away. Fortunately it is close to home.
Sis was supposed to tell the PCP that mom will be switching to a new dr who does house calls. He and his wife currently see 3 or 4 women there. It would make things like UTI checks and the drug reaction she had this weekend easier to deal with. We ended up giving her Benadryl, which is contraindicated for elder, simply because we couldn’t get an answer and the prescribed cream did nothing for the hives/itching.
Thinking of eyemamom and hoping things are going ok.
H’s father is gravely ill. When he passes, what is the protocol for paying for the funeral? H is now POA but that will end and he will be executor of the will.
Did he pre-pay for a burial site? If there is documentation about his wishes, I’d try to find that first. Notify your FIL’s clergy member if appropriate. If your H is on your FIL’s bank accounts, he may be able to access funds to pay for immediate expenses and then sort it out within the estate later. (Keep records.)
Thinking of you and your H.
Thanks Countingdown- very helpful.
When dad died his bank accounts were immediately locked down (within a day or two) – not sure how the bank even found out. I wasn’t able to get access to the funds until probate was opened, which required a death certificate and a trip to North Carolina. Overall, about 6 weeks.
If handling the bills until the estate is set up would be a challenge, could your husband use the POA right now to set up a separate account with both your FIL and your husband as joint owners, and fund it with the estimated expenses for a funeral & burial?
If you know your FIL’s wishes, you can prepay with the funeral home now. Your H can do this as POA. Many funeral homes also will take over an insurance policy and be paid from that.
My mom and dad had joint accounts and when Mom passed away, Dad had no problem accessing funds. This may vary by state.
In a month or so, my mother will be returning to her apartment, with aide support. Anyone have a recommendation for aides in Northern NJ?