I am wanting to bring my husband home from rehab with hospice care. My question is how much care am I expected to provide myself. I am 73 and not in great health myself. He is a big man and I’m not sure I can change him or roll him myself. I’m willing to try.
They will only send a nurse once a week to start(for about 45 minutes)to check your husbands vitals and such and aides to bathe him twice a week. They do not assist with changing or with toileting at all, so you may have to hire an aide to come help you with that. The plus side is that they will provide all needed equipment, supplies, and medications all covered 100% under your husbands Medicare. They can also supply a Hoyer lift to help you move him from the bed to the commode, but you will more than likely have to have someone there to help you, as again, hospice won't be helping with that.(other than showing you how to use it)
My husband had a permanent catheter, so I only had to empty his bag twice a day, but I did have to hire an aide to come put him on the bedside commode every morning(as my husband was a morning pooper). She would then hold him up while I cleaned him up and then she would put him back in bed for me.
If you hire some outside help, or get family to help you, you can hopefully handle it. But please don't risk your own health to do so. If it's just too much you may have to place him in the appropriate facility.
I wish you the very best.
Hospice usually doesn't offer around the clock care. It would be up to the family to do the major bulk of caregiving. Chances are if you bring your husband home, you would need to hire a caregiver to help you out. If Hospice has their own care facility, you may want to check on the cost. If it is in your budget, it might be the best route.
Sorry you are going through this.
You're better off leaving him in the Skilled Nursing Facility he's at, in their long term care section, with hospice coming to see him THERE than you are bringing him home. That's my opinion, after having hospice care for both of my parents while they were living in Assisted Living and Memory Care. Hospice workers come in for very brief periods of time, and that's the truth. They will provide you with medical equipment, supplies and meds that are all billed to Medicare, but the hands on care they do is pretty minimal. A CNA comes by 2x a week to do a sponge bath or shower (depending on the patient's level of mobility/consciousness), an RN comes in to administer meds and do vital stat checks, a social worker and a chaplain stop by periodically and that's about it.
Best of luck.
Granted, it's been 20 years and my agency was non-profit hospital affiliated and we had a cadre of 12 RNs, 10 or so LPNs, a number of CNAs, Homemakers, and all were union, it's still hard for me to imagine any scenario where an at-home Hospice family is left with such minimal care and oversight.
Perhaps Medicare and Medicaid reimbursement has changed, but as long as the client, under MC, was homebound, the client and family qualified for up to 2 daily RN visits, CNAs same, Spiritual, and Social Worker services. Families were not left wanting for help with cares although they do shoulder the 24/7 primary cares. We RNs were on-call all night and on weekends and had a 50 mile service area so, we covered a lot of ground. We provided medication mgt, often with locked subq pumps for delivery of pain meds and provided a host of DME, incl oxygen.
Hospice families are special and few can take on the challenges of providing for End of Life Care in the home. I was witness to and a part of some very beautiful and poignant moments and we RNs were always there for the last hours, no matter how long that may last once called in.
I read that the OP has brought her husband home for cares and I hope that the agency provides her and the family with all that they need and do the utmost to support the client and family through what may be a journey of several months duration.
These are opportunities for making memories that will ease the pain of loss for most family members. I'm forever amazed at the strength some loved ones draw from in order to have their loved one at home for their final days.
Then it's really on you.
When daddy went into in home hospice, Mother and YB did the 'training'. All I ever did was to give mom 2-3 afternoons a week off, If dad needed to be cleaned or fed, I did it. He went pretty rapidly downhill. I know he felt hunger, but he simply couldn't keep food down. He threw up on me several times and for a dignified and gentle man--this was humiliating. I'd laugh it off and remind him of all the times I barfed on him--and not as a child. I'd borrow one of his T shirts and clean up and get him calmed down (topical Valium--amazing stuff) and then we'd sit and watch RoadRunner cartoons and laugh until we were silly.
He did BEG me to OD him on the morphine, but they simply didn't give him enough to do that. If I could have, I would.
His particular Hospice team was wonderful and I can't say enough good about them.
WE were his Hospice Team. And glad to do it. I think this is the norm. If there is no family yes, I would reach out to Hospice agency and ask for help. My pitiful 16 hrs a week really just gave mom a breather.
It was not fun, but it did give me tremendous closure before he died. My YS, who was AWOL during all of this, was inconsolable when dad passed. And as she is now that mother has passed (3 weeks today).
Spend time with your LO's so you don't have to spiral out of control when they die. My heart aches for YS, but she has unresolved guilt and a LOT of issues. And all she had to do was show up occasionally.
Talk to the DON or desk Nurse and ask them who they recommend for Hospice care. Call the agency and see if they can evaluate your situation. I would have a second set of ears when talking to them. We sometimes don't hear everything and a second set of ears is good. Also, sometimes another person asks questions you would never have thought of. If the client cannot be left alone, it then is a 24/7 job for the family. You need support. You will be administering meds. If you choose a facility be aware that Medicare only pays for the service, not the facility.
And hopefully they'll help you think through your desire. Sometimes what we want isn't what's for the best. But hopefully, you can have hubby home and you both be well-cared for.
I think with your health issues and the fact that your husband is a larger man, there is reason to be cautious about trying to care for him at home.
Best wishes to you and your husband. He’s lucky to have you. 😊