I work with a number of hospice agencies both as pastor and as a home care provider. Research them carefully. Some are loyal to the aim of hospice which is client centered care; others are profit-oriented and that is reflected in the care provided.
They do not provide the level of care you are looking for. Home care agencies will, but are not cheap. I know I couldn’t afford me! But agencies do provide people to cook, clean, bathe/ change, etc. for longer periods of time. Most contract for a minimum of three hour shifts twice or more per week. That is to keep employees happy (I wouldn’t drive a distance for only two hours of pay which barely covers expenses of driving). Quality varies but agencies want to keep you happy and so you can ask for a specific aide to never come again, and keep trying until you find a “fit”.
My family just put my mom in hospice care. Hospice is a program for people who are dying and no longer want aggressive care; hospice provides help in giving comfort care to people in the last stage of their lives, and helps the family prepare for the loved one’s death.
As others have noted, hospice does not provide day to day health care for elders in declining health, and Medicare does not pay for such care. If your dad needs an aide to remain at home, the family is going to have to pay. My family chose to get caregivers from an agency, because we did not want to have to deal with scheduling multiple caregivers and finding someone at short notice if the regular caregiver couldn’t come.
When my family was facing medical issues/care decisions the hospital social worker helped to give us our options. I would suggest starting there.
Hospice care was only available if the medical situation was imminent and there was nothing more that could be done other than keeping the patient comfortable. Yes, hospice can be delivered at home. It doesn’t always have to be in a hospital setting.
Once you have made your decisions and plans for the immediate needs, if it doesn’t involved hospice at this time, I would encourage you to set up a meeting with hospice anyway and find out what they offer for the future and get “on their radar.” A little more than a year ago my Dad needed hospice care (rather suddenly) and it was full (home was not an option). We could not get into hospice and as a family we were faced with end of life while the noise, traffic and interruptions of a hospital floor was going on around us. The nurses and doctors really don’t deal with end of life. They just sort of left us on our own and pain was not managed well. We got into hospice for the last 3 hours and it was so quiet, so much more peaceful, and supportive. I could see this would have been so much easier.
Best of luck to you and I am so sorry you and your mother are going through this.
Although another poster briefly mentioned that long-term care insurance will help pay for private aides, I want to emphasize that. My mom got 24/7 care for my dad in the house for almost 2 years until his death, and his LTC insurance paid for a lot of it. It’s what made that option financially manageable, and was a game-changer for us. If it had gone over 3 years I think that benefit would have run out and we would have had to make other decisions, but we never crossed that bridge. So if your folks have LTC insurance, make sure to look into that benefit, it makes it do-able.
Thanks, everyone. We are in a good place right now. He is getting that third night in the hospital (where I am right now) so that Medicare will pay for rehab. The question is whether he’ll qualify for acute care or skilled nursing. My brother and I looked at three places, and the one associated with the hospital, which we prefer, is acute care. We’re not sure whether he’ll qualify. We think this one will be less disruptive because it’s just two floors below where he is now, but it’s too far for my mom to drive herself here. The backup SN option has the benefit of being only a couple of miles from their home. He did rehab seven years ago after brain surgery and did remarkably well so we hope that he’ll be receptive this time as well, though he’s in a different “place” mentally and physically.
The rehab will buy us some time to figure out what it looks like when he gets home. My sister has to be gone for 10 days starting Saturday so we want something in place that will be the least stressful as possible for my brother. (I live about 4 hours away.) I had to have a come-to-Jesus talk last night to get them off of dead center. I hopped in the car this morning at 5 to be able to be here to meet with the caseworker and get a list of preferred places. My brother was living in lala land thinking our dad could go straight home. Impossible. But he felt like when I was saying he can’t go home that I was saying that he could never go home, which is not what I meant. It’s been good to press my siblings on what everyone wants/expects. I’m different from them; I like to be clear and direct, which I’m sure comes off as callous sometimes. Fun times.
^^^This. If your dad is hospitalized for three nights, he will be eligible for rehab. I just went through this with my elderly mom. She was in rehab ~2 months. She went by ambulance to the hospital bc she fell and could not get up (had a UTI and some of her labs were also off). She was there 5 nights and was then taken by ambulance when discharged from the hospital directly to the rehab facility. They sent her insurance weekly reports, so always had to be ready for discharge notice if insurance said it was time to go. They would notify on a Friday and we had to be out by the following Tuesday.
I appealed on her behalf once when insurance said it was time to go bc, while in rehab, she developed another UTI that I felt affected her therapy. They agreed and she stayed another 2 weeks. The day she was discharged, I took her to the family doctor so he could write orders to get started with VNA for home PT, OT, bath aide, RN and SW, which is also paid for by insurance. Her doctor ordered bloodwork and another urinalysis that happened that day. By the next day, she was noticeably weaker and more confused than normal (she has Parkinson’s dementia). Sure enough, a third UTI in three months!
After almost finishing her third round of antibiotics and only somewhat improved, took her back to doctor and she is now on “suppression” therapy with another antibiotic once a day for a month. I also asked him to order an evaluation for Hospice Palliative Home Care to see if she would qualify. Met with hospice today and they called me later to tell me she qualifies. She needs to wait to be discharged from VNA services before hospice can start. This will also be covered by insurance since she has a chronic, progressive disease with multiple extenuating circumstances that is deemed medically necessary.
If your dad is a veteran, he could qualify for home care through that avenue. I just set my dad up with home care twice a week for three hours a time. He may be eligible for more help should his needs increase. I also private pay a house cleaner to come in once a week. The aides that come for my dad can also make meals for both of them and assist my dad with helping my mom (he has visual problems but can help her change out a Depends and sweat pants if needed and they can guide him with that).
It’s still not 24/7 but it helps. I also told my brother he needs to be checking on them more often to help me out, but he only helps when it’s convenient for him. Hopefully, you will have good Social Workers to guide you. The SWs I encountered in the hospital and rehab were so so. The SW through VNA has been very helpful and has shared in my frustration of lack of services unless funds are depleted substantially. We have PACE in our area but it is expensive for private pay as they don’t qualify for reduced or no pay amount at this time. I am trying to safeguard what very modest amount they have in savings bc my dad is still doing pretty well at almost 90 yrs old.
Sorry this is so long, but I hope some of this info can be helpful to you during this stressful time. Just know that there are many of us out there going through what you are and you are not alone. (((Hugs)))
^ That sounds like great progress! Hopefully one of you will be able to closely monitor the rehab progress. Not sure if he has Medicare or a Medicare Advantage plan, but when my mom went to rehab, she was reassessed every 3 days (Medicare Advantage Plan). It was stressful to keep on top of mom to coax her into trying her best to comply with the therapy. I made it clear to the SNF she could not be discharged back to my home until she could climb three steps, which is necessary to enter my home. (Prior to 5 days in the hospital, she had been completely self-sufficient physically.) I was shocked at how much she had lost after 5 days in the hospital - couldn’t lift herself to stand, couldn’t walk, completely incontinent, etc. Anyway, I had to appeal her release twice, but she finally was able to come home, although not the same as before.
Y’all have been so helpful that I thought I would give you another update and ask for more advice.
Dad made it into the acute care center in the hospital. The transition has been so easy. He seems pretty enthusiastic about the therapy. I think he likes the activity. I came home yesterday and don’t plan to go back until next Friday as I’ve been there 9 of the past 14 days. The staff does their team talk on Tuesdays to make a determination about next steps so we know we have at least a week, and they said that they’d give us a couple of days notice before they discharge him. @psychmomma he has regular Medicare and TriCare so we know that he has 20 days free.
So, about next steps … Is there something we should specifically be asking the hospital social worker/caseworker to get health care at home? Interestingly, the hospice idea now seems not as critical, but is that not the case. We had an appt Thursday with the new PCP to get the results from his test two weeks ago, but my sister cancelled that knowing that my dad would be in rehab. I wish she’d thought to get him to walk across the street and meet with us. He’s that close to the hospital! Anyway, advice on how to avoid pitfalls/unrealistic expectations?