Home hospice???

FaustinaMary

I am looking for your comments regarding personal experience as the full-time live-in caregiver. Home hospice, positives and negatives are?

Eg: Is home hospice an interruption in your day that you could do without?

Is home hospice annoying because they want to make as much money as they can by sending every discipline they can to your house?

Do you feel put upon, delayed, or stressed that you have to wait around for another visit from them when you have other things which also need doing?

Please elaborate.

loveskitties

Please don't be offended, but you post seems to be looking for the negatives rather than the positives regarding Hospice in your home.

Given the alternatives...doing everything for your loved one on your own 24/7 or getting hired help (which may or may not be reliable or experienced with dementia patients) I would say Hospice is a good assistance for anyone who qualifies.

My knowledge of Hospice is that they don't send anyone to the home who is not needed or wanted. Have no idea about "make as much money" as my sister's care was totally free on their dime due to finances and no insurance. There was also no charge for durable equipment or medications or other necessities.

If you feel that their visits are more hinderance than help, then they are not for you. For many they find it a comfort not to have to deal with the dying process alone.

JeriLynn66

In my experience, you can decline the services you find of no benefit to you or your loved ones. For example:Some patients may truly enjoy music therapy, some may not. Some families rely heavily upon Social Workers and/or Chaplains. Some need extensive Nursing visits, some don’t.

Typically, there’s a flurry of visits around admission to services and then a fairly set visit schedule until needs for symptom management increase. And visits should be scheduled with the caregiver preferred time as much as possible. However, most Nurses have a caseload of 6 visits per day with travel between homes required. And, if one patient situation changes suddenly, the day must be adjusted to accommodate the most urgent needs.

Hope this helps

harshedbuzz

@FaustinaMary

I'm kind of of the same mind as @loveskitties-- is there some reason you have a negative take on hospice? Did you have a bad experience perhaps? Or are you feeling unready to accept that end-of-life care is appropriate for your LO? I know sometimes other folks on this site sometimes recommend hospice earlier than I would. That said, dad's MCF asked me to approve hospice as a means of getting extra help as his care needs increased. I said yes, but dad died that evening before his 9am appointment the next day. I dearly wish I'd been more proactive as mom could have really benefitted from the spiritual support as she'd recently moved and was unable to attend church because of dad's needs.

You said: "Is home hospice annoying because they want to make as much money as they can by sending every discipline they can to your house?"

You have that exactly backwards as it applies to Medicare. Medicare pays hospice companies a per-diem for each patient in their care. They would net more if they didn't offer as many services in-home.

Do you feel put upon, delayed, or stressed that you have to wait around for another visit from them when you have other things which also need doing?

I do know of some folks who changed companies because they were unhappy with the one they chose initially. These companies can vary a great deal in what they provide. Some will cover incontinence supplies, some have volunteers who will provide short visits so you could run an errand or two. Some are larger and more deeply staffed which may make them more responsive when that is needed.

It's also entirely appropriate for you, as the caregiver, to decide what you need from them or to ask for a different individual if the person they sent isn't a good fit. One friend of mine has a very robust church family and had no need for spiritual support so she declined that. Another friend was assigned a chaplain who just wasn't a good fit for her. They sent someone more mainstream, and my friend became so close to the woman she asked her to officiate at mom's funeral rather than their parish priest.

Typically, once a PWD is on hospice, they're not out-and-about so "waiting around" or "interfering with things on has to do" isn't really something I've heard anyone complain about.

HB

mommyandme (m&m)

I was my moms in home caregiver. We had hospice on board for 1.75 years. They provided supplies, equipment and meds which helped us tremendously. I took advantage of the times the CNA, chaplain and music therapist were there, that was an hour of my day I could focus for myself. The respite volunteer allowed me three hours once a week. That’s about 20 hours a month that I felt mom and I had added support. When the nurse came, usually once a week, I could ask questions and get helpful ideas. I was able to text every team member for questions and scheduling. I could call the office anytime with questions or concerns and if I needed a nurse to come out they’d send one even if not on our team. The social worker also provided some helpful info. The team could see changes in mom that I might miss since I was with her everyday. Mom liked the extra attention for sure. When I called for the hospice evaluation, I thought mom was within six months of life. Well, she stayed for quite awhile. She still slowly declined while under their care, enough so she got recertification.

With that being said, I think I understand how a visit might be inconvenient. Sometimes they’d come early and interrupt my workout. (I rode a very quiet stationary bike behind my mom while she ate breakfast and watched tv), which was annoying at times. Other times I knew it’d be the same ol same old with the nurse. Sometimes I’d call to cancel or reschedule, which was fine as long as the nurse did her one visit every 14 days for Medicare. We mostly did once a week nurse visits anyway. There came a time that moms decline was stable. After becoming completely bed bound, there wasn’t much more they could do that I wasn’t already doing for her, she could stay like she was for quite awhile, even a year, so they discharged her. That was very difficult for me. I had to get the hospital bed replaced but she hated to move at all. I ended up buying the bed and air mattress from the DME service that hospice contracted with so she didn’t have to move at all. I felt somewhat deserted but I understood the reason for the discharge. Then 2 mos later Covid hit me, then mom. I called hospice for an immediate evaluation as I knew mom was transitioning. They came at 10:30 pm to do an emergency evaluation cause I exclaimed “what if she dies tonight without any support and she’s in pain!” Long story!

And even with that, I’m a big proponent of hospice coming in. If your LO is admitted, take it!

ButterflyWings

I agree with the members' comments above. And will share a simple reminder that we say here: "Care needs drive the decision-making".