My 92-year-old dad was kicked out of rehab because he was not progressing fast enough for the insurance company to continue paying. We decided the next step would be hospice at his own house. He is very heavy to lift and has lost strength throughout his body. Gets tired alot. Appetite is bad. Wondering how we are going to get through this difficult time and how long he will survive this?
Look into it before jumping into the fire 🔥. Good luck & hugs 🤗
Hospice is end-of-life care (as in medical care). They send a nurse and an aide to give a bath once or twice a week, but the hands-on caregiving is still the responsibility of the family.
Hospice is a godsend, because the medical professionals come to you so you don't have to go to them. They also support the entire family through the dying process of the loved one. Ignore those here who have said they kill people -- they do not -- nor are they a hindrance. Hospice is an on-call 24/7 service designed to help people in the last months of life when going back and forth to the doctor and hospitals is no longer useful.
The most important thing to know about hospice is that it now becomes about the QUALITY of life, not the quantity. Their goal is not to keep someone alive at all costs, but neither are they there to hasten one's death.
You can also check with the insurance to see if the offer any in home care as well. They sometimes will allow a nurse or in home therapy to visit.
Not much. I speak from a long experience dealing with jospice at home.
They will be an aide who will help him bathe or shower a few hours a week. Or give him a bed bath. Insurance will start paying for diapers and supplies that he uses while on hospice. A nurse will come in a few times a week, take his vitals and order supplies. They pretty much do all of nothing. They will also send a social worker to stop in once or twice a week who willbe completely useless to everyone.
This is what hospice at home will do for you. You'll pretty much be responsible for everything else.
You might want to look into a hospice facility for your father.
(copy and paste): VA Crisis Helpline 24/7
https://www.va.gov/resources/the-pact-act-and-your-va-benefits/?utm_source=google&utm_medium=paid_search&utm_campaign=ar_pact_fy22_veterans&gclid=CjwKCAjwzNOaBhAcEiwAD7Tb6IG5DDupzZSRfw7A4lJsVCp8LbwREGvPIcZwzCbr3eJDPFxFKkD0VBoCSGkQAvD_BwE
(copy and paste): A Place for Mom - Veterans https://www.aplaceformom.com/lp/sl/veterans?kw=3234-prospecting_nb_hospicenat_null_apfm&kwg=H:NM:X:X:Hospice_Near%20Me;&keyword=hospice%20services%20near%20me&match=p&device=c&network=g&account=G:US:NB:APFM_Master_New&campaignid=10755895187&adgroupid=107760968844&ad_id=454349357261&AdPosition=&geo=9033430&distrib=s&targetID=kwd-314643230059&interest=&hl=Hospice-Care%7CHospice%20Care&location=&utm_source=google&utm_medium=paid_media_sem&utm_campaign=prospecting_nb_hospicenat_null_apfm&utm_content=null&utm_term=hospice%20services%20near%20me&gclid=CjwKCAjwzNOaBhAcEiwAD7Tb6K54_NmpmYQcqEhyFck12SjacIMddqxfRjgVDZd4Qr4dUpeuq9MjnxoCDpUQAvD_BwE&gclsrc=aw.ds
Google this: hospice facility near Woburn MA
My best friend's husband was a WWII vet, had severe dementia and was in a nursing home until his death...................all paid for by the VA (excellent and respectful treatment through out has last years).
Placing him near you will give you the opportunity to visit everyday if that is what you desire.
Both my parents had/have dementia. My mom was in a memory care facility when she died. The facility was wonderful and they had recommended a hospice care company for mom. The RN and I met. Mom was provided with a hospital bed and the RN reviewed mom's medication and had that changed. Then covid hit and I was not able to be with mom during her last 3 months of life but was able to be with her for the last 3 days. During this time the hospice RN visited with myself and my brother and the facility let us stay in the room with mom.
For dad, he has lived with me for the past 2 yrs with the last 3mos bed ridden and in the final stage of dementia. Dad is also a US Navy and Air Force Vet with 100% service connected disability. With that was able to find a hospice facility that has a VA contract to take care of Vets in the final stages of their lives. Going the Hospice Facility route was/is hard, as no one takes are of your LO as you do but to keep/save your physical, mental and emotional self, finding a good and caring place brings peace of mind.
* You will need a MD authorization for Hospice. Did you ask his dad's medical provider about getting him into Hospice? This would be the first step / along with contacting your local Hospice organization.
- it is important to know their philosophy re medication. Their purpose is to provide COMFORT CARE; not staying alive with medical intervention. Although they will provide meds for pain (= comfort). Be clear on what they do and do not do.
* The main fact I learned working with others availing themselves to Hospice is that a person DOESN'T have to be diagnosed having a terminal illness to qualify.
* From my experience, two different Hospice organizations provide different levels of skills and support. First one was 100% there for me (for my client); the more current one is less than desirable - which started with the coordinator who set up everything ... said she'd do xxx and didn't ... and didn't even let me know ... when I am managing / handling / coordinating everything. Unfortunately, unless you have references from others, you may not know this until you are in it.
The 'best' response to getting through these difficult times is:
* stay in the moment / return to the moment when you start to future trip
* give yourself time-outs / breaks / have others in place to support you.
TAKE CARE OF YOURSELF; Get the respites you need.
* No one knows how long your dad will survive. I believe you are speaking of your grief and sadness, and your overwhelm in this situation and your responsibilities. It is huge.
Gena Galenski
Touch Matters
I've worked many private care clients who then went on hospice care. I find they don't even provide support to a family. Mostly they were an inconvenience and in the way.
Hospice is nonprofit and administered through a hospice program with your local hospital. I don't know anything about private hospices so can't speak to that, but I am a hospice volunteer and would choose it any day over being shipped to and from the ER and nursing home on an endless cycle until I die in a hallway somewhere.
Hospice is for people who have a prognosis of 6 months or less. The patient (or family members, if the patient is unable) has decided not to seek a cure for their illness.
Hospice is fully covered by Medicare. It includes:
a doctor's evaluation
a nurse assigned to the patient
social worker if desired
chaplain if desired
CNA care if desired
medical equipment if needed
volunteer support if desired
24/7 help and availability
The goal of hospice is to make the patient's last months, weeks or days (and sometimes YEARS) as comfortable as possible. Most people's quality of life improves on hospice, and the #1 comment from patients and family is "I wish we'd done this sooner."
It sounds like your dad is already withdrawing from this world by sleeping more and eating less. His body is probably starting to shut down. This can last months, or days.
I think hospice is a great resource. My grandfather and aunt were on it, and it made their last months more comfortable and made the rest of us feel more supported and less alone. That's why I became a volunteer, and I would advocate for it for myself, my husband, etc.
It is a sad time, but it can be a beautiful and rewarding time, too, facing this inevitability head-on and honestly. Take good care.
Hospice treatment can be given a nursing home and often is. The same support is offered to the patient and the family.
I hear and affirm this time of change and the grief and distress it can cause for everyone , the patient and family members.
Some things to be aware of re your question about hospice:
1. You may choose a hospice of your preference.
I strongly suggest that you and your family call a hospice of choice and aske them to provide you with education about their services. You may also call more than one hospice to do some 'comparison' if you like. Families do that these days. In other words, if the physician refers you to a hospice, you may decide to use that one, or if you know a hospice that you would prefer, you have every right to request that one. You may also start hospice and change hospices or stop hospice at any time. Hospice is a choice, not a mandate.
2. The hospice will send an RN out to do a initial assessment on your father to determine Hospice appropriateness. He/she will provide a lot of information for you and your father about his care expectations and hospice services, insurance coverages, plan of care, different disciplines on the hospice team available to you and your family and the patient etc etc etc.
3. Assuming that your father meets hospice appropriateness when the RN completes the initial assessment, and it does sound like that he will, then it is your ( POA and patient, if patient is cognitively alert and oriented to make own decisisons) will decide if you want to accept the hospice care. It is important to include your father in these conversations if he is able.
4. If you elect to accept hospice services, and based on your collaborative conversations with the case manager assigned, they will provide you with the frequency of hospice visits; these may be for example only: RN, 1 x week , CNA, 2-3 times a week, Social Worker 1 x month, Chaplain 1 x month ( or the frequency you request, for example may be 2 x month or 1 x a week for Chaplain), Volunteer 1 x week...... Hospice is AVAILABLE 24/7 for needs based on patient changes and and frequencies of visits vary based on pt. needs throughout the duration, HOWEVER, hospice is not in the home on site 24/7 with someone from hospice always present in the home . Hospice helps the family and patient provide care that the family will be expected to do also and enables the patient to have a peaceful end of life in their home. Many families still find it necessary to provide help or presence in the home with the patient 24/7 and this has to be either family members or paid help. Hospice is paid for by insurance. SO, look into what insurance or other financial coverage or assistance is available. For example, if your father is a Veteran, he is most likely eligible for some excellent veteran benefits that will help in the home with paid help in addition to the hospice care.
Hospice is about living and quality of life for the patient and the family .. Hospice can be a great service assisting the patient and family through a life limiting illness and towards a peaceful EOL ( end of life). However, hospice may not be for everyone and your and your family and your father will need to decide if it is for you and IF the family members are all in agreement to help and be in the home as needed to be with the patient; or if there are other financial resources to assist with 24/7 presence and help in the home in addition to hospice. In other words, someone will need to be with the patient in his home 24/7 ( most likely) and hospice does not provide that. Also, family will be expected to provide daily medications and assist with the cleanliness of the patient ( for example if the patient in incontinent and wears diapers, and the diaper becomes soiled, hospice will not send out an aid or an RN to change a diaper. Some families do not realize this and, understandably some family do not feel they can do such care, so then there is an issue to be addressed. Peace.
You will receive all kinds of supplies that he needs (pads, wipes, diapers, certain meds to keep him comfortable) as well as a bed that allows raising head and feet. They will check him for pressure wounds and probably put protective pads to help avoid wounds.
Hospice will explain their role at the evaluation meeting when he gets home. Be prepared to provide the round the clock care. Even if the patient is in the active phase of passing, they only provided my parent with a bath every other day. A nurse came by about the same. The rest of the care was up to me.
You will get a hospital bed.
You will get all the supplies that are needed. (briefs, wipes, gloves, lotions, barrier cream and medications will be delivered)
A Nurse will come 1 time a week. More often if it is necessary.
A CNA will come at least 2 times a week. (2 CNA's will come if it is not safe for 1 to manage care)
You will have a Social Worker assigned. They may meet with you by phone after the first meeting. They will be in contact at least 1 time a month.
You will also have a Chaplain that is part of the Team. You can request that they visit or not it is up to you.
The ONLY person on the team that is required to visit is the Nurse.
the team is always available by phone if you have any questions. The Hospice staff is available 24/7 by phone and they will send someone out any time if there is a problem.
the Hospice team will not be there 24/7 so if needed caregivers will have to be there. Caregivers do not need to be there at all times if the patient can be safe by themselves. If the Hospice team does not think it is safe they will then require that someone be with the patient or a transfer to a facility. the Hospice will not pay for the facility but they will continue care.
Hospice does provide for Respite Care (a bit under 1 week) that is covered by Medicare, Medicaid and most other insurance.
Hospice will also transfer a patient to an In Patient Unit if pain or symptoms can not be managed at home.
Call the Hospice of your choice, as a matter of fact call a couple. Interview them just as you would any medical service. If you find you are not happy with the one you select you can always transfer to another.
It wasn't her illness that almost took her clean out of here. It was the cocktail of morphine and Ativan that they gave to her IMMEDIATELY and around the clock and then had the nerve to attribute her irregular heart rhythm and sudden drop in communication to her being in pain somehow. What??? She also developed bedsores that were hidden from me. My mother was probably minutes from death when I finally told them no more and took her to the hospital. They were hard pressed about making feel like I was killing her but my mom's wishes were to save her life if possible.
Three months later she's still struggling but she's able to communicate and smile, understand and raise her limbs again.
Please please please understand that our loved ones are considered disposable to the insurance companies. Don't just put him into hospice unless he's actually on his last breath.
Hospice is ONLY given at the patient's request or the family's request. No doctor can assign hospice. You can ONLY get on hospice if your life expectancy is 6 months or less and you have CHOSEN not to seek a curative treatment, like chemo.
EVERYTHING is reviewed with the patient and family. Medications, pain control, food and water, activity. The patient makes autonomous decisions.
There is no euthanasia, for heaven's sake.
hospice doesn’t have to come every day, however they bill Medicare daily. Our experience was horrible. The nurse immediately began dosing my Father with morphine. She upped the dose on a regular basis…she told us it was to soothe him so he wouldn’t become anxious. It didn’t. He laid in the bed for 11 days, developing hideous bed sores…Hospice didn’t want to do anything about the bedsores…I ended up calling everyone on the Leadership Team at the hospital…the Medical Director actually came to our house..in 15 minutes he was being prepped to go back to the hospital for in-house Hospice and treatment of the necrotizing wounds.
I learned (do your research), that oxygen isn’t necessarily helpful to the dying person..however Hospice brings it in because it makes the family feel better. And be careful of DNR-a hospital WILL pull oxygen and all other services they deem ‘treatment’ and not ‘comfort’. Again, awful experience…let your family member pass in the hospital. It was the worst experience.
If he has not yet been discharged (?) -- HOPE NOT -- as others have said, you need to be clear with the rehab facility it is "not safe" for him to be discharged home. Those are key words, that put the responsibility back on the facility to work out a "safe" discharge!
That frankly should be to a Medicare/Medicaid qualified skilled nursing facility which has "inpatient hospice or palliative care services." A hospice physician would need to certify he is in need of such hospice care and has less than 6 months to live. He would (or you if you are his "medical agent" via an advanced directive) would sign off on no further treatments that Medicare or Medicaid might cover to treat or cure any illness, and have a DNR (do not necessitate order). This means he is cared for largely in terms of pain but all other medical care ends. Then they do the palliative care thereafter.
Of course this may not be want is preferred and the decision really among the family is to do "hospice at home." Medicare (other insurance still should pay) but this is not 24/7 care. Either the family has to take shifts OR outside aides have to be hired if there are resources to pay for that.
Having had experience two times (one family/one friend), it is very hard IMHO to do hospice at home without a "village of helpers" around the clock and/or paid aides. Many aide services only send an aide for a few hours a day (maybe 3 or 4 hours, that is it) to help with things such as cleaning your loved one, some meal prep, helping feed them if necessary, helping to change soiled linens; and maybe (but really depends on the service -- private pay or not -- house cleaning, laundry, etc.) All else is done by family/friends around the clock.
Most aides are not RN, cannot do admin IV pain meds, change bandages, change med mix. And RN would do these things, stopping by perhaps once a week; but most have on call nurses if it is really needed (not for treatment, but for things like need different pain meds). But again, the care is mostly about pain care not treatment of underlying disease.
If the LO has a short life expectancy, this all might be very hard but manageable at home. Doing this more 6 months (what Medicare covers) or longer is nearly impossible.
If your LO has the resources -- home to sell later, money in the bank, in an IRA/401K, whatever -- tap into what you can now and spend privately to augment any Medicare covered hospice aides. Private pay nursing where we live (not that an RN is really required for this, but if you want it, it is an option) is about $150 an hour with an 8 hour mim (about $1,200.00 a "day" but really only for 8 hours). Or you can opts for paid RNs in 24/7 shifts if you really want that.
Private pay aides (not RNs, but trained hospice helpers) outside of the Medicare benefit can go for less than an RN ($500-$1,000 for an 8 hour shift). If you can opt for night aides -- so you and family, volunteers can get some respite, that is what many folks do. Have the Medicare hospice aid come in the mid morning to handle things -- the washing, feeding part -- family and friends do the early am (before work may be easier for others to help); and family/volunteers help after lunch through the pm time when the private paid aide can arrive (usually like 10 pm, covering until 6am)....
This is not a fun or easy journey. Try to get rest and break where you can.
Here is a short piece from Medicare: https://www.medi
Hospice provides a nurse who visits for an hour weekly to assess status, orders gloves, incontinent supplies (this is most helpful since he is totally incontinent), any medications he continues to take, and an aide 3 days a week for bathing and or transitioning from bed to chair.
The purpose is for the patient and family to decide that they wish no further extraordinary care or hospitalizations. I wish my husband to die comfortably with dignity.
As far as moving him to make him convertible he needs a sheet with the top at least above his shoulders and passed his knees. With team work you can wrap the corners in your hands and lift together on the count of three. When changing his brief team work as well. The best way to make sure the back of the brief is set right to avoid having to turn him constantly tuck it under as far as you can. This applies to taking it off and putting one on.
Hopice can hire outside caregivers to help with the family. I have helped a couple families through this process. Most reasontly with a person I had already been taking care of for two years.
You have a tough road ahead of you. Sometimes they hang on because there is someone they need to talk to before going. Or if they are leaving a spouse behind they need to hear that spouse will be taken care of. Giving them permission to let go.
Something you need to know. Towards the end they do not speak. It can last a couple days or hours. But durring that time they can hear EVERYTHING you are telling them. It has been scientificly proven by brain waves. You can tell them how much you love them or to let go. I wittnessed a family member tell someone I forgive you, then they passed on.
I will keep yawl in my prayers.
Good luck.