﻿Any suggestions for resources on what In-home hospice is and isn't? - AgingCare.com

My MIL has been with us since mid November. It was contentious for me for awhile because I felt that I wasn't given an option in the decision that she come stay with us. After a few tense months, I was able to get her into In-Home Care with Carter Healthcare, and a semi reliable aide who came twice a week to bathe her. I did the long nights for awhile, (she has a habit of getting up and down all night, she has a buzzer around her neck to use for emergencies, but typical of her selfish personality she uses it at 2 am for a cup or tea) eventually I told my husband I was moving back to Kansas, with out youngest son, and he gave up his job of 26 years to come home and take care of his own mother. He has seen first hand what the nights are like, for example last night at 1 am when she had already hit the button 3 times in 30 minutes, my husband finally told her. "I'm going to bed mom, I'll see you in the morning, I hope you can get yourself into bed." (He said this because he asked her 3 times to please lay down and try to go to sleep and she just wanted to sit in her chair, her bed is literally 2 steps away from her chair) Woke up at 5am, she was in her bed, I don't know if she was able to get in by herself, or she woke up one of my kids to help her. (as I said, extremely selfish lady, who see's nothing wrong with waking up a 16 yr old at 1 am for help) She's not going to get better, her PT from Carter has only done half workouts with her because she keeps falling, because once again, she will NOT use a bedside commode. (She is very selfish, and takes her need for modesty to a whole new level) My husband and I have a deal, (a kinda mother vs marriage type deal) that when she goes back to her PCP in May that we want to ask if he will sign off on her to go to In-Home Hospice. But my husband, keeps saying he doesn't want people coming in and doping her up, strapping her to beds, and catheters. He just wants her to be able to do what she wants until it's her time to go. (She's his mom, so he has HUGE, TITANIC size blinders). When I broached the subject with her nurse from Carter, I was told in Florida, that they do not offer hospice, that it would have to be another provider, and I get this gut feeling that they want to keep re-certifying her for their services, not recommend services that would take her out of their care plans. I have read in many different places on the internet that most families regret not calling in Hospice sooner. Does anyone have any advice or articles they could suggest that I could show my husband as to what EXACTLY In-Home Hospice is/isn't and try to explain to him that they are there to make her days comfortable and let her pass in a way that's dignified for Mom? Any help is greatly appreciated and I thank you for your time, patience, and energy in this matter.

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I kept my mom home to the end. She didn't have the other health issues, she did have Alzheimer's. She was diagnosed in 2009 and passed a week ago.

I do understand your husband's desire to keep mom at home but it has to be a decision made by everyone in the home as it impacts everyone. My husband not only agreed, but helped out a lot. Without that support I could not have done it. I think your husband will need to be more hands on if this is what he wants. When my mom was up at night, we took turns. One went to bed early, swap mid night, other slept late in morning.

Kids must be cushioned from all of this. They still need to be kids. They still need to go out to pizza, participate in activities, etc. We do not have any children at home. We did take turns attending all of the grandkids events. They got one of us at each event. Some events we took Mom to with us. Early on she went to all, later on we didn't take her to as many.

So what does In Home Hospice provide? Geewiz got more that we did if they got 2 hours of aide daily! My mom was on hospice for over a year. They sent a bath aide twice a week. She was here for about an hour. I assisted....not a break. The nurse came once a week to check vitals and check in on meds, etc. She was here about 30 minutes...not a break. The social worker came every 3 weeks with the nurse...not a break. The doctor came ever 5 weeks, with the nurse...not a break. They did supply all meds, chux, disposable briefs, and large equipment. We had already purchased everything except for a reclining wheelchair which they brought. We only used it a few times, but it was great for those few events.

I feel that each family has different needs and abilities. It takes more than one person (adult) to care for a LO at home. If the total support is not there from all involved, then it isn't fair to anyone, including the LO. There are some amazing facilities with people who make caregiving their life mission. The decision to place a LO can be done with as much love as keeping them at home. It is often the best choice.
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Wow, you really are facing some challenges, aren't you? I remember your earlier post and how everything seemed to be stacked against you, but I also remember that you broke through a barrier and moved forward.

I have a lot of comments, but I first want to address the choice of hospice and then ADLs. But even before that, I'd like to suggest considering Palliative Care, which is a step above hospice in terms of terminal treatment.

On PC, e.g., pneumonia would be treated curatively. It's my understanding that under hospice, pneumonia would be treated to relieve pain or discomfort, but not for curative purposes.

PC could be the lead-in step you need to ease into hospice, and it might appeal more to the uncooperative out-of-town sister, who seems to be opposed to a more appropriate method of care than self sacrifice at home.

1. Different hospices, in-facility vs. in-home.

When I felt my father was ready for it, I contacted several and learned that:

a. The ones that don't provide in-facility care expect the family (which would be just me) to provide 24/7 care at home. The hospice visits were to me totally inadequate. That was not a scenario that was realistic or even feasible in our situation, and in my opinion.

b. I did get recommendations from respected sources in the medical profession for in-facility hospice, but never contacted two b/c I was familiar with both. One was a SNF+ that was so bad my father said at the end of the first day: "get me out of here!" (I did interview them before and was impressed, but the actual care didn't even meet standards.)

The other was a SNF+ to which we had been several times, with good services except for the last time when service barely met standards, the therapists clearly didn't want to work with my father, and I decided that it was the end of the road for that SNF.

I later learned that that chain of SNFs had been seguing into specialization - one close to me specialized in respiratory problems; another seemed to focus on knee replacements and similar less long term issues.

c. The others I contacted were VERY anxious to set up an "evaluation" /"assessment." I learned later at the facility I discuss below that their nurses were NOT allowed to even discuss an eval or assessment until they had a HIPAA authorization from Dad or I to ask the necessary personal information.

When I think back on how many home health care companies, palliative and hospice companies wanted to come out and do an assessment (w/o even mentioning HIPAA considerations), I shudder to think how fortunate I was that I decided not to pursue anything with them.

I was unable to find any good choices between the various options.

2. What we worked out turned out to be the best solution possible. My father was already in a SNF for rehab, but was seguing toward being unable to progress b/c of multiple co-morbidities. This facility was a non-profit, managed and operated by The Dominican Sisters of Peace.

I am not Catholic, nor am I religious, but the level of organization, care, outreach to family, and more appealed to me, and provided me with the comfort or an organization that was truly serious about rehab and end of life care. It was run like a good business, with the care and compassion of people dedicated to helping others.

I will now NEVER consider a for-profit rehab unless it's one in a teaching hospital. If I ever reach the situation of needing care, my choice would be a Catholic or teaching hospital affiliated rehab center.

3. a. If this appeals to you and you're willing to consider it, google the Sisters and their facilities in your area, or contact a Catholic hospital and ask what palliative and hospice care they offer. I did a quick search for Florida; it wasn't clear if they operate any facilities in Florida, but it might be that they work with other non-profits.

It's definitely worth a try. If the care I saw here in Michigan is the standard, I don't think you'd be disappointed.

b. If it doesn't appeal to you, you can also get a list of hospice providers in your area from the Alzheimer's Assn. They respond much more quickly than the AAA. I got lists e-mailed within 1/2 of requesting them.

4. I think it's also time for the family to take control in getting her in rehab, whether she likes it or not. The chaplain and deacon who helped us were outstanding in listening to and interacting with patients. That kind of attention might just appeal to MIL.

The day I knew my father was heading toward the end, both the female Chaplain and a male Deacon came and spent time with us. The Deacon spent probably 1/2 an hour just holding my father's hand. Then he came back again before I left to ask if any further bereavement counseling was desired.

On separate issues:

5. As to bathing/showering and toileting, since she's not assisting you, this is what I'd do:

a. Bathing/showering: forget it. Use no rinse soaps and shampoos and bathe her away from the bathroom. Put on music to help her relax, keep her clothed except for the specific body part being cleaned and make sure her privacy is respected. You can easily remove, say, her arms from a sweater but leave the rest of her covered.

Follow up with a treat, to "pattern" her into seeing no rinse cleansing as something to look forward to. Again, more music therapy, perhaps just a no-work chat about her life, etc...something nonthreatening but reinforcing. Use her "vanity" to work for you.

b. Since she won't use the commode at night (and it CAN BE a fall hazard), use some form of overnight brief to keep her dry. Get the approximately 3' x 3' waterproof pads that are placed underneath her lower back, hips and legs to deal with anything that escapes the briefs.

If she resists, tell her they have curative properties, or are scented (sprinkle some lavender or rose fragrance on the pads (not the ones that touch her body though) to make this a reality.

You might also consider using aromatherapy in her room to increase the level of relaxation, which probably is needed b/c of the dementia.

6. As to your husband's position of keeping her out of a "home", that's laudable, but actually entirely erroneous. My father got much better care in good "homes" than I could possibly offer him. This last go-around was even better b/c of the quality of care. I was burning out, couldn't keep up with his needs at home, feeling guilty about it, and was really stressed and overwhelmed.

During his first rehab stint at this facility, he got SO MUCH MORE than I ever could have provided. In addition, he was with qualified people, a multitude of them, vs. just me.

CAVEAT: I've spent probably the last 1/2 hour wordsmithing this message, so some of these points might already have been made. My apologies - I tend to be perhaps overly meticulous when I write. (Blame it on legal wordsmithing!)
Helpful Answer (1)

"So, if MIL dies tomorrow, there's 650K split 2 ways.

NH care in FL runs what, 10K per month? How much is her SS and pension?"

Yeah, she also has a 150k life insurance policy, and receives around 2500 a month between pension, her husbands survivors pension, and SS.

Oh, I totally agree that it would be worth it to spend the money for a care facility, but my husband being the Momma's boy he is, is trying to keep his mother's wish of not going to a "home" which is why I have worked so hard to get everything she receives be In Home Care. That and Mom is a thrifty person, who does not like letting go of funds. She actually thought it was "high" that the copay $30 for the equipment needed for her nebullizer.

The truth is, When my husband and I went to the lawyer to amend him to the PoA at the request of the hospital, they wouldn't accept NJ daughter over the phone, said she could be "anyone" . Mom signed the Five Wishes form at the hospital that give me healthcare proxy. so the lawyer said, I technically make the health decisions, and the NJ daughter has the right to the money. Unless a new PoA or a more comprehensive Advanced Directive is drawn up. Mom balked at the $800 fee to amend and do things the right way. So I guess technically I could make healthcare decisions but I prize my marriage so I won't do anything drastic until my husband has came to conclusion that the next step needs to be taken. I could give a rats ass about the NJ daughters feelings. If she really was invested in her Mom's care she would have shown up at least ONCE in the 7 times she's been in the hospital since she came to our home in November.
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I'm asking because my mom was in a NH, private pay, for 4 1/2 years and there was still funds left at her demise. If MIL is as ill as she seems, she's not going to last a year.

Do a cost benefit analysis of 120K for NH, less if she's got SS and pension coming in . In my book, it's an easy decision.
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"There's a big inheritance at stake here?"

It's not life altering in my opinion, and truthfully I could care less if I ever see a DIME of it. I guess I put more value on less tangible things like being able to say my time is my OWN, happiness of my children, being able to be spontaneous and go out to a Chinese buffet, you know "the little things" but once again, I stand alone in that aspect. But she has about 440K in Moneymarket, etc. and her home is worth probably about 250k.

The daughter owns a daycare in NJ, and apparently is barely breaking even, so I guess she's more dependent on the $ than I am. My husband was able to get a job working 8 hours a day 40 hours a week, and I demanded that MiL pick up the extra financial burden, basically I demanded that she provide the $ I lost when I gave up my job. So my house is not rich, but the bills get paid and honestly that's OK with me, I have been able to pick up an extra $75 to $100 a week via Amazon MTurk, since I'm stuck in the house anyway. So we tend to use that $ to purchase the occasional Papa John's when no one feels like cooking after Mom has had a long, needy day.
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There's a big inheritance at stake here?

How to get hubby to see things how they "are"?  Have the doctor talk to him privately.
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"Would she qualify for a nursing home? That also is a needs based referral by her doctor."

When she first came to the house and fell naked trying to leave the house, the Dr. recommended then that she go to Rehab for a couple of months, but she refused, therefore, her NJ daughter and my husband refused. The last time she fell and went to the hospital before my husband left his job and came home, I told the hospital that she was not coming back to my house. The hospital then discharged her to an Uber, that brought her to my house, paid for by the NJ daughter. So much for me not accepting her huh?

I have no doubt in my mind that she would qualify for hospice, she has lost weight, lost balance, in general a deterioration of health, that even the Dr says there is no coming back from that it is only a matter of time with her End Stage COPD which has now caused her heart to overwork to the point of CHF. The Dr has told us many time, that the body tries to compensate for a system that is not working good (Lung, Pulmonary) therefore the other systems take on the extra load (Heart, Circulatory) to the point where it is a string of dominoes that once it's started will keep moving from system to system until the body gives out. So I have no doubt that the Dr would recommend hospice.
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Frankly, I'd be grateful for a broken hip. She could go from there to " rehab" and stay. Why didn't she go to rehab after her falls?

You need to call the doc up now and ask for an adjustment to her sleep meds. You need to tell the doctor that you want to discuss Hospice at this next appointment.

And call up your idiotic SIL and tell her to come for a week so she can be part of the Hospice discussion.

Me, I'd be in Kansas. Have you gone back to work? How are you all supporting yourselves if DH isn't able to work? Is his mom paying room and board, and for her care?

She should be.
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You cannot just sign up for hospice. There are qualifying requirements, the first being she is not expected to live another six months. In home hospice services are limited, it is not 24 hour or even five hour care each day. Maybe an hour a day by CNA, one visit a week by RN. Would she qualify for a nursing home? That also is a needs based referral by her doctor.
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"Desperate, your profile indicates that MIL suffers from dementia/alzheimers. This is the cause of her inability to differentiate time of day and appropriateness of her requests. It isn't likely her being selfish."

I understand that her nights and days are messed up and I give extreme latitude on that 80% of the time. But when it's 1:30 am, and you tell her that she needs to get in bed and stay there, she is disrupting the house, and her reply is "Why can't the boys take the alarm?" I find that selfish. My children did NOT sign up to take care of their Grandmother, and I am NOT going to ask my children to do so. When I tell her that the boys are not caregivers her reply is "Well what else are they suppose to do?" I can only say, "Be Kids" and walk away before I lose my composure.
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Thanks Barb!

MiL has diagnosed End Stage COPD, and CHF. She also had Moderate Dementia, Adult Failure to Thrive attached to her file the last time she saw her PCP.

Carter Healthcare provides a PT 2 times a week. to help her regain strength so she doesn't fall as often, which actually worked for about a month or two, then she fell again, and bruised her ribs or something, and she hasn't been the same since. Carter Healthcare also provides a RN who comes around like once every 2 weeks to check vitals, recommend things to the Dr., etc. I specifically asked the nurse the last time she was here, "Is it time to consider Hospice?" and she said that was not something she can make a decision for, that is something that has to be decided between the family and the Dr. That's when I learned that Carter Healthcare does not provide Hospice Service in Florida, I was also told at the time, that our county does not have the census numbers for Carter to qualify for a Home Health Aide for mom, because the PCP wrote the order that it was medically necessary for mom to receive PT, OT, and a Home Health Aide, seeing how she has fallen 8 times in two months, and two of those required 3 day stays in the hospital each.

Carter Healthcare is billing Medicare, (Mom does not qualify for Medicaid, and her oldest daughter in NJ, who is the DPOA is not interested in liquidating her assets to put her in a home, she's more concerned with saving her inheritance, and shows little concern for what myself and children are going through)

The lady who comes by twice a week to bathe Mom, is through a service called Granny Nannies. That we are paying for out of Mom's checking account. I was throwing my back out trying to bathe her myself, and she refuses to let any of the strong strapping men in my house help her in and out of the shower. So, I pitched an epic fit, and both my husband and sister in NJ, agreed to the $600 a month expense.

I sometimes think that I am the ONLY objective person in this situation. NJ daughter hasn't seen her mother in almost 6 years, and is in denial as to how "bad" Mom is, because Mom can put on one hellava show for Doctors and on the phone with her daughter, says all the right things. My husband is also in denial, he just wants her to be able to pass the way Mom wants to pass. He thinks that if we can get mom to "sleep through the night" that things would be better. But Mom is on 150mg of Trazodone and it doesn't even put a dent on her night time restlessness.

She's not going to get better, she is slowly going to get worse, and quickly. I kept suggesting to my husband many times, that she needed a bed alarm, and he wouldn't hear of it, but when I asked the Dr the last time, if she was a candidate for it , and he replied, "I'm surprised she doesn't already have one, she definitely needs one" it was only THEN that my husband decided she needed a bed alarm. So basically if a Dr tells my husband something then all of a sudden he believes it.

I just would love to be able to get my husband to see, that hospice will do everything they can to keep her comfortable and safe. I am scared to death that she's going to fall and break a hip, but I'm constantly told by my husband that I'm a worry wart. I'm all for Mom being active, but when that activity only leads to the inevitable fall, I personally think it's time to re-evaluate things, but apparently I stand alone in my house on that aspect.

The PT lady, keeps telling Mom, that at least at NIGHT, she should use the bed side commode, and she can go to the bathroom during the day when she's more stable, but Mom, will NOT use the bed side commode. She says she can't go, if people can see her.

I just need guidance on how to get hubby to see how things ARE, not how he would LIKE them to be.
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A Hospice evaluation script must be ordered by her physician. A computer search of Hospice services in her zip code should produce listed agencies. Just a thought though, in home hospice typically sends in aides for 2 hours a day/5 days a week. Is that enough help for your situation?
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Hi, Desperate. It's good to see you back!

Two things. If your current agency isn't a Hospice Agency, they can't provide THAT service. Are you private pay with Carter? Or is Medicare or Medicaid paying for it?

Did you call the administrative office of Carter to verify that they don't do Hospice in Florida? Their website seems to indicate that they do. It's certainly worth a call. Is she currently getting " palliative care" from this agency?

What are MIL's health issues? Hospice would be appropriate if she has a life limiting illness and a doctor certifies that she will probably die in 6 monts hs. Is that the case?

Frankly, if your husband thinks that Hospice involved being strapped to a bed, I'm not sure reading material is going to change his mind. I'd call the local Area Agency on Aging and ask for the names of not for profit Hospice providers. Ask both the AAA and the providers you contact to send booklets.

There is also a national hospice and palliative care organization that has some nice on line material. 

There is also a Hospice section on this site that you can click on. It's just under the forum: click hospice and enter your zipcode.

And have you considered a Nursing Home? So DH can go back to work?
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