When the woman I am caring for, has decided to sign for Hospice on her own. What are her options?

I forgot, for those that do not know, she is 78, has had CHF (Congestive Heart Failure) since 2005, leg ulcers, COPD, and other diseases that are not going to get better, and they have only gotten worse. Leg's swelling, skin tears like paper, etc. on and on. Non ambulatory most days. Thanks for allowing me to share. I am her private caregiver, and watch her or am working with her for around 6 - 7 hours per day 7 days a week.

I know that the rehab facility my Mom entered after breaking her hip willingly took her on for pallative care when it was fairly certain she was not going to recover from her injury. She did require 24/7 care. With us, the only challenge was paying for the nursing home care. It doesn't sound as if your patient can care for herself and this is one option if she enters hospice. Hospice care in the home, in our area, is wonderful but it does not provide 24/7 pallative care--that is provided by the family or caregivers paid for by the patient. Hospice facilities are certainly less costly than a nursing home, if one can be found that will take her if the rehab facility is unwilling. This has been my experience but I suggest she discuss her options with the local hospice. They will have all the options and costs.

Hospice is Fantastic! Do a little research, as there are both NON profit, and For profit Hospice centers. As to whether the for profit centers will provide more, I doubt it. The non profit Hospice I used did not cost me a single dime. I live outside the city limits of a very small rural Georgia town. When the local hospital released my wife to hospital and turned her over to Hospice, they told both me, and her family that she probably wouldn't live beyond 6 weeks. She held on for 21 months. Hospice took excellent care of her, and provided literally EVERYTHING she could possibly need, with the exception of bed linens (probably would have that, had I asked). You will still have to have your own 24/7 in home caregiver, as Hospice does not provide that. They will send a nurse to the home on any number of days you decide you need, but only up to 2 hours per day. My wife was also very headstrong, and could be combative if she didn't get her way. She had "End stage COPD", and had been a heavy smoker all her life, and not about to give them up. At this stage in her life, I wasn't going to argue too much about it. Stopping at this point in time would not have reversed her condition. You can expect your electric bill to about double. Lights and TV will pretty much be on day and night. Then there is all the medical equipment plugged in and running. My wife was continuously fiddling with the bed remote. I am so very grateful for this Hospice. They took excellent care of my wife, and any time I had a problem, or just needed to ask a question, they were only a phone call away, and could be at the house within minutes if needed. My wife finally passed away two weeks ago, thankfully in her sleep. She has gone to be with the Lord! Her pain and suffering are a thing of the past. I still find myself reaching across the bed at night to check on her. I miss her dearly. She was a terrific woman!

If the woman already has signed with a hospice organization, they should be able to answer all the questions.

Regarding her behaviors, has she been evaluated for possible medications to control these so she can be managed by nursing home staff?

Does anyone have power of attorney for this woman? Anyone authorized to make medical decisions if needed?

Perhaps the situation is not as complicated as it may seem. Blessings to all concerned for a peaceful outcome.

Hospice is not something you decide to join. Your prognosis needs to be 6 months or less to live and the doctor needs to justify the prognosis. Patients who improve can also be. Removed from hosoice.
My dad did at home hospice, they made it very clear that the 24 hour service is until the patient is stable, then they drop by for vitals each day. Unless death is immenent, custodial 24 hour care is still up to the family or facility.

Ask Social Services in the facility where she is now for assistance.

Best wishes back at you....

My mom is under hospice now for the second time. She did not improve the first time but just stabilized. Since the first time she has broken her hip and can no longer walk at all.. her mental state has declined rapidly since the surgery. Hospice is awesome. I am a only child the Social Worker with the hospice she is under now has helped me tremendously and the extra eyes and hands on my mom ...well, words cannot describe the relief.

If she has qualified for hospice, it means that 2 physicians have signed off that her medical situation is such that she has less than 6 months to live. The 2 mds would be the hospice medical director & the md at the facility she is in now or perhaps her own md.

In theory she could return home & have home based hospice come in 2-5 days a week to do specific caregiving & medical monitoring (paid by Medicare). But she will need someone else either as a paid caregiver or unpaid caregiver (usually family) at the home 24/7 as well. Would that be you? If so, you really need to be paid.

Have a ? - how is her current stay being paid? At 110 days her Medicare post hospitalization benefit for "rehab" is maxed out. Now Medicare does provide & pay for hospice. But hospice does not pay for the room & board charges at the facility. The r&b will need to either be private paid, LTC insurance or by Medicaid.
Who is dealing with all this for her? It sounds that you are very caring & concerned individual, but unless you are her DPOA MPOA your ability in all this is limited. is her family involved in her life? Has she done other legal like a will? How are the details & costs on her home being dealt with?

Moondance gave the best answer.involve the SW at the facility. the patient can certainly consult with hospice on her own but as others have said there is more to it than that.

I have heard great things about hospice and I know in most circumstances they are great but in my situation I take care of my mother for the last 14 years she is going ALS now 18 years. Hospice started coming in about a year ago and the only thing they do is give her a shower couple times a week and send a nurse in once every two weeks (basically fill out paperwork)and charge Medicare over 6000.00 and really doesn't give me any relief. The bad part of my situation is either you hire a caregiver (lots money) and there's the trust issue! Or nursing home (tried for respite) was horrible,or put her in bed but that still confines us to no life!

Hospice can be anywhere. Just keep her comfortable, bless you.

Thank you pam .. . the end is almost here. It has been miserable. I pray for her to be in peace with herself, her family, and whatever she believes in.

I appreciate you!

Sorry pyramids, that you feel that there is a "trust issue" with private caregivers.
I was a loving no charge giver for my parents. That ended, now am a private caregiver, have all of my certificates, licensed and insured, bonded, and know that without a doubt, trust, dignity, confidential, and knowing your caring for someone's loved one is very important to me. Had the State Patrol do a 50 state background check on me, that is presented to my clients when I am in need of moving to another family.

Possibly you have heard, or have had a bad experience, but could you really have an open mind. There are horror stories about kids stealing parents money (aged 40 - 60 plus), and the care giver is always blamed. This is just to tell you to have an opened mind. I am someone who does care. I am educated, I have never had as much as a traffic infraction. I am just a woman, that could and does do a heck of a great job, when I get a call from a son 3000 miles away drinking a drink with his wife, really appreciating what i do. Then the other son, has no clue, but wonders why I charged so much? He is very negative, and the outlook is that all caregivers are bad, that is so incredibly sad, and I know will stop many good people out there that have a degree in psychology and social work, to not do it. I don't want to be a manager of anything. I think that there needs to be more educated people doing the caring, and proving to the world that just because we have decided for very personal reasons to do this type of work does not mean we deserve unjustified unilateral "and there's the trust issue!" Not in all cases, and honestly, in this day and age, trust is a universal thing.
Do you trust to leave your car unlocked.
Do you trust the housekeeper the first time.
Do you trust your co worker to get in your purse to get your license

Please, let us all stop, slow down, smell the roses.

I know one thing, you certainly do trust that I will be with your loved one, feeding her, preparing her nutritious meals, making sure she is clean, gets her medications, socialize with her, watch her favorite t.v. show, play her favorite game, listen to her talk about the family fracture(s) and how horrible this person treated that person.
Nap times, tucking them in, getting them up, seeing that they use the restroom, or if non ambulatory, Diapers like they are babies, yet treat them with the utmost respect, because these are the people that have lived before me, and I respect them for being them, and knowing that they do not necessarily like the medical position they are in, but I am glad my number is in our area, because there are more than a dozen phone calls a week from people whom trust me explicitly with their loved on.

This was not to downgrade what you wrote. It was merely to have you look at the life in the day of a caregiver. It is or could be expensive in your eyes, because this is a career for some of us, and we would do this if we won the lotto.

I believe every person has a skill, and I believe there are many many great qualified people in all areas of life. Care givers are noticed because they are in your house watching your loved one. Please be kind, think about what I said, and let us not lump all care givers into the same mold. I know many excellent people who would be exemplary at this position, and the negativity is far too much.

In everyone's life we have choice's. Choose to learn to try, to give people the benefit of the doubt. Before that do your homework. Don't take someone's advice. Background check's do not lie.

Thank you and I do wish you a wonderful day

Livelifefull you are obviously a wonderful caregiver and unfortunately a rare find. The stories we hear here are often about lazy unhelpful care givers who have almost been forced to do this work or starve especially the older women. It is hard and underpaid and often the people who do this are not trained and can only work in private homes. I have seen the wonderful aides and the other sort. You have educated your self and clearly care for those you help a rare find in a world of the mediocre. Families who need help view the fact that it may cost at least $10 an hour as too expensive, but to earn that little without benits is far too little to live on. If they hire through an agency the fees are much higher but the worker earns little more and although the trustworthyness may be checked the worker may still be lazy. Last year I spent two weeks in a hospital and the aides were of high quality but they were mainly working to earn money while they attended nursing school and clearly were going to become excellent nurses with all the practical experience they were getting. The same critisms you are concerned about apply all through the health care industry not confined to the lowest on the totem pole. If you are an excellent caregiver you will be greatly appreciated is all I can say

Veronica - Thank you so very much.

I realize that there are many opinions, and I realize the realities of the monies, and I myself would be hard pressed to pay for this kind of help, but I know without a doubt, that my services are professional, courteous, loving, kind, nurturing with compassion.

So when I read the horror stories on the internet, it really makes me frustrated by the people doing wrong, making it so hard for those that do believe, and have quit their high paying careers to make a difference in this world. That is all I am doing, and have been doing for 8 years.

Some day, like I said, if my boat comes in and finances are not an issue, I will be the same woman doing this for next to nothing for those that need it oh so badly, and yes, I do realize, there are millions that do not have the money.

Thank you for your great support to what I am doing.

It takes a Village.

Debbie