mtierney said:thanks, Author. Had the initial interview yesterday and I was pretty overwhelmed. I was assured that we could leave the program at any point. I guess I cannot get my head around the basic premise of “comfort care”. Only certainty I have is knowing that he would not want to be hospitalized again! We are in Ocean County now.
The realization that we will soon lose a loved one is perhaps the most difficult thing we will ever have to face. I was Executor to my Uncle's estate. When he called and asked us to come I was not sure what to expect. It became obvious quickly that he would need much help. Within four days he could not walk with out the aid of a walker. Quickly the stairs to his bedroom were becoming insurmountable. Acorn stairlifts
installed their wonderful aide soon afterwards. They gave my Uncle a discount because of his time served in
World War 2 and told us how to avoid Pennsylvania sales tax by having his Doctor declare the device a medical necessity.
The woman in my life deserves a medal. She bought and prepared his favorite foods and actually gave him
art lessons. He was an artist in his own right but was always eager to learn
We went home only twice in ten weeks for my own set of Doctor appointments
We hired a private duty nurse to be with him. Once in a rare while we took a
night out to see the sights of Middleburg Pa. We never found them
I bid him once in a while to speak Greek with me. It was a rather painful experience for me as he spoke
the worst Greek I have ever heard. But I knew it would bring back memories of a warm and loving childhood
His courage, his faith in God was absolute. I knew he only wanted to be with his deceased wife and his
God. I have never seen such courage
In whatever form you can avail yourself the service provided by Hospice...........I cannot say enough good
things about them
I found this unattributed quote, and hope it helps a bit:
“Never get tired of doing little things for others. Sometimes those little things occupy the biggest part of their hearts. The grace of our Lord Jesus Christ, and the love of God, and the fellowship of the Holy Spirit be with you.”
(Had to correct spelling in quote!)
so kind of you! Monday begins a new direction and I will know much more.
hospice care is much better then the extreme invasive and ultimately futile medical efforts that precede it.
There is the idea and purpose of hospice and then there are the actual people and companies that carry it out.
I had two experiences with hospice. The first was when Joyce was sent home with a diagnosis of a couple of months to live. A hospice nurse was supposed to arrive at around 6 p.m to show how to perform infusions. She showed up at 10 p.m., harried from having several other people to visit before arriving at our place to give the first infusion and instruction.
She was in a hurry to get the job done and leave. In fairness, it was probably one hell of a long day for her. She ran through the instructions and left. I looked at Joyce with a W.T.F.? look on both of our faces.
Joyce called the hospice office and another nurse was sent the following day. That person spent time to review the process and we were more calm after that. There were several nurses assigned for monitoring of Joyce's condition and care. Things went smoothly after that until the morning Joyce's pain got to the point that she went to hospital for pain relief. She died in hospital, three days later.
Pain was never an issue until those last couple of days. Except for the first nurse, there was no complaint with the hospice service.
My second hospice experience was with my mother at the end of her life. The care was appropriate but seemed kind of mechanical. My mother's body was just shutting down. There was no indication of pain or discomfort but rather that she spent more and more time sleeping and her breathing became more and more labored until she died.
Takeaway ---- There are three parties involved. The patient, the hospice staff and (hopefully) the people who are with the patient on a daily basis. Ask them what to expect. Is the patient expected to lose the ability to communicate as the disease progresses? How will that be handled if it happens?
Ask where to call when there are questions and where or who to call if there is a sudden change. Know that you can ask for a different hospice nurse AND even a different company/provider if you believe the patient is not getting appropriate care. Know what equipment is to be provided and where it is coming from and when it should arrive. Make sure you are comfortable using the equipment before the instructor leaves. If you are not, ask for as many repeat explanations as you need. Ask what will be done for pain and what your options are if the pain relief is insufficient.
Write your questions on a piece of paper so you can ask them on Monday.
That is all I can think of at this time.
During the initial introduction to staff and equipment, use your cell phone to record the instructions for use of any equipment. Better, have someone else record the instructions so that you can pay full attention to the instructions.
Hospice service seems to offer good care — just not enough! I am having issues with the health aides which we private pay. Told a few days ago that their aides have complained that getting husband in and out of chair and bed is too difficult. That is exactly why I needed help
I have Home Instead, and will check out Right at Home. Anyone familiar with either? We are now in Ocean County.
Do you have have an agency there called Just Better Care? Here they’re in close competition with Home Instead (who aren’t in palliative or hospice at-home care) and also provide excellent service.
Also, has anyone suggested the use of bedside aids? (Devices such slings and hoists, supports that make the lifting much easier and more dignified)
when my husband went into hospice care about 6 weeks ago, we had already been using Home Instead for about 18 months. No one mentioned that the agency didn’t cover hospice patients! I will speak to them tomorrow.
Seems as though hospice would have ideas about this too. I imagine you've spoken to them already though.
Sorry for your difficulties, mt. This should all be easier somehow, but it seems sometimes we're left to figure it out for ourselves....
Sorry I’ve been away for a few hours, or would have answered sooner. Here, the hospice service you use is able to suggest a matching in-home range of agencies (similarly to the way hospital discharge services work). Perhaps naively, I would have expected them to do that with you.
Home Instead, in my experience, is a good agency but any agency is only as good as the personnel you’re dealing with ‘right now’. You might have someone compassionate, caring, well-qualified and intelligent who has vast experience and who can cleverly work around a lot of workplace challenges. Or you might have someone who sticks to core tasks as a way of maintaining their professional boundaries.
Palliative care, as you know, can call for a wide range of skills and that might be why no-one previously has said whether they do or don’t cover the work. I owe you an apology: I’ve just checked the Aussie site and full palliative services are listed.
thanks for clarifying that, Joanne, but I think the agency much prefers the light housing, meal prep, and laundry aspect for their home health care aides. The agency seemed shocked that he needed attention paid to a bedsore! They are aware of his hospice status, so it should not be that he needs personal attention.
Hospice nurse comes 3 times a week, but that does not cover his needs.
Had a visit last evening from the nurse supervisor for the HI agency and I got the impression they had a few on the job injuries and were overreacting when they gave me same day notice that they were dumping us immediately until we had a hospital bed. We already had him in an adjustable electric bed.
The bed was set up on Wednesday, but I still don’t feel this agency will be satisfied.
Interviewing another agency on Monday.
The conversation needs to be with the hospice supervisor and not the home care agency. Also, not with just the nurse who shows up 3x per week.
If that doesn't work, search for another hospice supplier.
Threatening the current hospice outfit with moving to another supplier should also get result. That worked for me on Thursday with a St. B. hospital associated service. After the forth un-returned phone call, I threatened to find another provider. My call was returned 1 hour later and more importantly, the problem was solved. (Yeah, even St. B. can be moved to do something.)
The point is, you have enough do handle. You don't need to be stuck with crappy service that doesn't meet your needs. If you don't get a sufficient response from the hospice supervisor, change the hospice service.
one question worries me:Will changing people/faces confuse or upset my husband? It has been 18 months with the same agency.
The home health agency I worked with would not allow their home health aides to deal with bed sore treatment/prevention and the like. This set of tasks fell on me to perform. I hope you have better luck.
The rules governing these agencies need to be consistent and on the record. I have learned a lot the hard way. I was not told of the restriction on wound care up front. Still have not.
The hospice nurses come 3 times a week and on call. But these wounds change by the day and one day neglect is serious.
It appears the system pushes patients toward hospitals and nursing homes — the opposite of the hospice concept.
joan_crystal said:The home health agency I worked with would not allow their home health aides to deal with bed sore treatment/prevention and the like. This set of tasks fell on me to perform. I hope you have better luck.
There are in-patient hospice options. Not what you want I am sure but a viable possibility.
All I can say is so much is so very different here. I’m so sad you’re going through this difficult time with insufficient support. When I compare your situation to that of a friend here who’s nursing her partner through his terminal illness (final stages) at home, it’s just so different.
Pressure sores are constant worry. But a special nurse comes to check those each morning and afternoon, as part of the palliative service they’ve arranged - at this stage, not to do so would add unnecessary suffering.
If I see Father R at work tomorrow, I’ll ask him to add your household to his prayer list, for peace and comfort.
Thank you, Joanne, prayers most welcome here!
Starting this weekend, a new home aide service begins. I hesitate to add the words “heath care” to the title of this service since I have sadly learned that the agencies are mostly focused on caring for the house and keeping an eye on the patient .
Joan: I also learned that these agencies do not apply medication (exception would be for routine pill taking) or wound health care — I, too, must provide that care, supported by three visits a week from a hospice nurse — or on-call. Caring for my husband is not the burden — doing everything skillfully is my worry!
Another difference between our countries, then. We have the option, with actual nurses being able to call in and supervise (obviously for a negotiated fee). There's also the Hospital in the Home possibility. The agency for which I work would send the Home Care Packages supervising nurse to check personally on the care her nurses are giving. And private agencies would do the same (for more $$$).
Hoping the new agency provides more suitable care!
mtierney said:Thank you, Joanne, prayers most welcome here!Starting this weekend, a new home aide service begins. I hesitate to add the words “heath care” to the title of this service since I have sadly learned that the agencies are mostly focused on caring for the house and keeping an eye on the patient .Joan: I also learned that these agencies do not apply medication (exception would be for routine pill taking) or wound health care — I, too, must provide that care, supported by three visits a week from a hospice nurse — or on-call. Caring for my husband is not the burden — doing everything skillfully is my worry!
That was my worry too. He had always given himself his insulin shot. I had no idea how to do it. I was fearful of overdose/underdose, missing entirely, hurting him, etc.
Honest? Or mean- spirited?
Inheritances undermine the fundamental ethical justifications of capitalism. We tolerate staggering inequality because we adhere to the idea that anyone can succeed through hard work and good luck. Giving some portion of the populace a head start in the race of life based on nothing more than the coincidence of their birth is fundamentally unfair.
It is not easy growing old
because they’re NYT articles and I’m not a subscriber, I can’t read them (over my limit), however we routinely hold free info sessions for everyone over the age of 45 years on wills/estate planning, advanced health directives planning (enduring powers of attorney, planning for assessment for various kinds of support, planning to modify a home or lifestyle and how to fund it etc)... We also hold sessions on legal guardianship for/of adults, on what the Office of the Public Trustee does and what your other options are if you have no family or friends you trust. We discuss rights and obligations of patients and medical & care team personnel, and how to complain, how to get redress, who from.
At my regular professional networking Breakfast yesterday, a Death Cafe was promoted. I believe they’re also run over in your area. Anyone can attend a Death Cafe, they’re low-key and give you the chance to ask any question at all about life before and after death, and any procedural matters about bodies, organ/tissue donation, rituals, autopsies, illnesses, legislation, inheritance, grief support etc. This link is to a Death Cafe in NJ last year
Slightly different topic.
The Standards and regs for supported accommodation are so what different, however the background is basically the same in most English speaking countries. Some of you might find this article, on how the accreditation measures are derived, very interesting.
Joanne, the gist of the article — it is about money, no mention of care giving.
“I have been interviewing architects for the memorial I plan to build to my inheritance. The site will of course be the grounds of my mother’s nursing home in Westchester, and given her diminishing funds, I fear it will be rather small: The size of a birdhouse, I’m thinking. Not just any birdhouse, a birdhouse for old, infirm birdies, with a special area for art therapy and birdie bingo. Having just written the monthly check for my mother’s medical care, I anticipate I’ll be able to spend as much as $280. I hope, nonetheless, to erect a monument that will equal the Taj Mahal in terms of loss and despair. Goddamn it, I wanted that money.
I know, I know. It’s appalling to be thinking about an inheritance; my thoughts should be on my 91-year-old mother, who had a stroke and for the last three and a half years has required round the clock medical care.
I was shocked by the craven, venal thoughts oozing out of my brain, too. But there they were on the pillow when I woke up one morning; nobody else was in the bed, and as Freud so famously said, “The unconscious, she is like a septic tank. Nobody wants to look at it too close, you hope it stays covered up, but when it starts seeping out on the lawn and even the neighbors can smell it, you don’t have a choice. Thank God, you live in an apartment in New York where you have municipal sewage.”
Where was I? Oh, yeah, my rapidly disappearing inheritance.
My inheritance — is there a more entitled phrase? It was my feeling for most of my life that anyone who counted on an inheritance was a moral and financial failure, that as an adult you are responsible for yourself. Those bumper stickers in Florida that read, “I’m spending my children’s inheritance?”
My feeling was, “You go, Granny, and better make it snappy, because the way you drive, you don’t have long. My suggestion for living it up: Hire a driver.”
I’m hung up on this inheritance thing now, I think, only because I write the checks and see the funds evaporating. Before she got sick, I always encouraged my mother to spend more on herself.
Then again, maybe I didn’t worry about an inheritance in the past because I knew I would have one. My mother had a Depression-era attitude about money; she was never going to spend what she could, no matter how much I nagged her.
Look, Ma, I know you get a kick out of finding a place you can get a $12 haircut, but you can afford something nicer.
Look, Ma, I know you never buy anything that has to be dry-cleaned, but I’m buying it for you and it’s a $180 skirt and you can’t throw a $180 skirt into the washing machine. So what if it will cost $7 to dry-clean it? Be a sport.
My mother’s only indulgence — her passion, actually — was travel, and even there she insisted on flying tourist. When she was 88 I finally convinced her that for a 17-hour flight to Egypt a business ticket would not be throwing money away; she could sleep, she’d arrive rested. Three weeks before departure she collapsed in the kitchen of her Daytona Beach apartment with a brain bleed and lay there for five hours before anyone found her.
Now she is in the nursing home with dementia, unable to walk, never acknowledging that she is unable to walk or
Once in a while we even chant our jolly ode to capitalism, the one we’d be singing if two made a parade and we were marching off to the airport, a gay green flag with a dollar sign rippling before us:
Rich or poor, it’s good to have money.
Muh-ney is huh-ney.
Then I go home and write the checks and think what a good daughter is never supposed to think: Farewell, my lovely inheritance.
it’s sad, true, but then it’s the parents’ $$ until they actually cease living, literally not figuratively. It’s not ‘estate’ or ‘inheritance’ until then, it’s only earmarked as such. (Could just as easily be wiped out in Stockmarket crash or natural disaster time)
joanne said:it’s sad, true, but then it’s the parents’ $$ until they actually cease living, literally not figuratively. It’s not ‘estate’ or ‘inheritance’ until then, it’s only earmarked as such. (Could just as easily be wiped out in Stockmarket crash or natural disaster time)
Or, when the will is read, it could turn out that they left it all to WNYC.
true. It's theirs, after all.
Eugene M. Brennan`s Tree Services LLC
Info - Website - Contact
Phone: (973) 325-5663
Essex & Morris Contracting
Phone: (973) 676-8590
Magnolia Home Remodeling Group
Phone: 908 273-5252
Promote your business here - Businesses get highlighted throughout the site and you can add a deal.
Add a free listing for your business
West Orange - Open House, Sunday, 12/3, 1-4pm
3 Bd | 2Full Ba$0
3 Bedroom 1 Bathroom apt for rent -Maplewood $2,500 per month
3 Bd | 1Full Ba$2,500