My fiance has been in the hospital, rehab and now a nursing facility for 11 weeks. He is desperate to come home. The assessment will take place on Nov 16th and they anticipate that he can come home on the 27th. The social worker advised that I contact agencies to make sure I find one we like and schedule their assessment as soon after hers as possible. What possible questions do I need to ask ?(availability- are they staff or contractors, bed sore care etc...)
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And don't worry about cleaning every week or so. My sister couldn't stand the noise of just opening the mail, let alone a vacuum cleaner.
If you have a Gilda's Club in your area, reach out to them for support. Although I haven't kept up to date on their schedules, when I did I was impressed by the various activities which were planned, for the individual with cancer, for caregivers and for families. And everyone there had or was having some experience with cancer - you would be among friends.
CURE magazine is also an excellent source of information on cancer. Last time I checked, many articles were archived online. Articles range from personal experiences, to practical suggestions, to complex scientific articles.
But I'll offer just some general issues to address for a home health care agency paid by through funding, as opposed to a private duty agency (which you probably wouldn't want b/c they're not covered by Medicare and are extremely expensive, as well as generally unregulated).
1. I assume you have to have a script by a doctor or NP, just as Medicare requires, so make sure the SW or a Discharge Planner will arrange to have that done before your fiancé is discharged. It's the only way to ensure that the home health care agency is paid.
2. I've found the Alzheimer's Association to be excellent with a rapid response whenever I've requested lists for home health care agencies, private duty companies, and assistive/adaptive home modifications. Call your local chapter and ask about that. There's also a TF number for the AA but I don't have it immediately available.
3. Then start calling. Ask first if they hire their own staff or use independent contractors. Go with the ones that have their own staff. Their schedule is more controllable and more reasonable. I've dealt briefly with an agency that used independent contractors but had to terminate their services.
Ask if they have an oncology nurse, PT, OT, speech (if needed), SW, home health aide, and/or any other categories of home care staff. Ask how long they've been with the agency, and if any are experienced in treating someone with cancer.
One aspect I've found very helpful is whether or not the agencies have reps at the hospital. These in my experience are the more organized and professional companies. If the reps are there at the hospital, arrange to meet with them there perhaps with a checklist of questions.
Home care agencies are growing in corporate sophistication, and marketing reps in my experience are very knowledgeable and can offer additional advice and connections.
One that I've used 3 times has a rep who focuses on Veterans' affairs and was active in creating a ceremony at a rehab facility last year for Veterans' Day.
4. Ask if the same individuals will be assigned for care, except in emergencies or vacations. There's a big difference. Specific individuals typically develop schedules, use a calendar accompanying their information and care packet which they'll leave with you. You'll know at least a week and generally 2 weeks ahead of time when they'll be coming.
Independent contractors have different schedules. Sometimes appointments aren't scheduled until the night before, so you often never know who's coming or get the same ones.
This happened with the agency I fired. There were too many people involved, they wouldn't always call me but called my father and he couldn't hear well. So strangers were coming to the door; he never knew if they were caregivers or robbers.
They also didn't have the same commitments as employee. They didn't see my father on a continuing basis - it was constant change. And that's disruptive, not only b/c of someone different coming for the visits but because a consistent therapist can see changes, improvements or not, and make adaptations or recommendations.
And one who came was actually a slob - disheveled (and dictatorial).
5. You'll want to be present to go over their plan of care after the initial home assessment by the nurse. Ask about it, especially the goals, which they set the first week after all the therapists have seen your finance. Discuss any goals with which you don't agree.
6. Ask the nurse about any in home adaptations your finance might need - wheelchair, or other assistive devices, etc. If things like grab bars, a ramp or others which require installation are required, ask about contractors qualified to install them, or whether the Waiver Program will handle that.
7. Your profile indicates he has cancer. Ask about radiation or chemo treatments, if they'll be scheduled, frequently, etc. If the discharge physician isn't your fiancé's oncologist, ask about interface between the care team and the oncologist.
The discharging physician might just have been someone who treated your fiancé during his hospital stay, so it's important that the oncologist be involved in any post-discharge treatment to address the stage of the cancer and what might be integrated into home care.
So ask also about the temporary plan of care, seguing into what the oncologist might recommend for followup treatment.
8. If he does need chemo or radiation, ask if the home care team can help with arrangements for transport. They might indicate that's up to you, but they might also have affiliations or knowledge of local transit that's hopefully reasonably priced....or perhaps that would be covered by Medicaid.
9. If chemo is involved, and it's a first round, ask about side effects, such as dehydration from vomiting, and anti-emetics to counteract that. I understand there are better ways to treat this now than years ago, but it might still happen. I think there are some oncology med professionals on this forum; perhaps they'll offer suggestions on chemo nausea and vomiting.
10. Ask about special diets. In my sister's later stages of cancer, she found eating to be challenging - nothing except thickened juices and salty food tasted good. So it might be that a dietician would be appropriate to visit.
11. Ask if the Waiver program will provide respite for you as caregiver. You'll be needing some down time.
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