Mom qualifies for a team of helpers from Hospice, but I can't shake the feeling that this isn't the best thing right now. Any advice?

cadams, if you are not sure, don't do it. If you think she can get better, don't do it. When the day comes that you see her spiraling downward and she can't eat, swallow meds or drink anything and you KNOW death is near, you call Hospice. She will get great comfort meds, nothing else. No calcium shots, no calls to 911, no office visits, no rehab. Just comfort. Not until you KNOW.

Tried pretty much everything has been said, but when you visit there is nothing to stop you mentioning to the staff something you observe. They may not be able to discuss what they are going to do about it but at least you have drawn their attention to something that bothers you

I cared for my father for 4 1/2 years, in my home, while he suffered from Alzheimer's disease. I had Hospice care for 10 months, and I interacted with the Clinical Liason, Aids, Nurses, Nurse Practicioners, Physicians, Social Workers, and Chaplains. I have to say that admitting him into Hospice care was the absolute best thing I could have done. I have NEVER met such a compassionate, available, patient, and informative group of people in my life. The entire team assisted not only my dad, but my entire family in dealing with grief, fear, and assuring me that I was doing everything I could to make his time here as comfortable as possible. I am so grateful to the team of healthcare professionals that guided my entire family through the difficult journey of losing someone I loved so dearly.

Thank you for the answers. I do all the things suggested and mom loves it. She is doing well and i do not see her passing soon unless she got sick from something. Routine care for her decay issue with her teeth keeps her comfortable and eating without problems. Her eyes help her see what she eats, her cards playing bingo, and seeing the faces of her loved ones. All are for her quality of life til she passes. My brother is not the nice person you may think he is but I won't go into that anymore here. Thx.

tried0659, your situation is indeed terrible. How painful it must be to feel powerless!

It can be very difficult to decide what is best for someone on hospice. For someone who is expected to die in the next few months, is dental work "comfort care"? Which pills should be discontinued? There are often multiple views on these questions, and more than one of them legitimate, but someone has to be responsible for each decision. In this case, that is your brother. That doesn't make him a better person than you, or mean every decision he makes is better than what you would decide, but one person has to make each decision. Your brother is in charge.

I hope you can let go of your personal pain about this, and instead focus on the comfort you can provide to your mother by being there with her, holding her hand (if she likes being touched), perhaps singing to her, or reading to her. Even though you can't make the medical decisions, you can make her final days more comfortable. And please don't take any action that might cause the staff or your brother to ban you from being with your mother.

tried, I ache for you, because you really have hit a brick wall if the judge has ruled that brother is in charge. You really are stuck with hoping brother cares enough to keep mom comfortable. It probably does make sense not to put her through eye exams if her eyes do not hurt her; if she has heartburn she should get the GERD med, but occasionally people get stomachaches FROM those meds if used for a long time. My mom absolutely needed hers not to ever stop though, or she'd have terrible pain and be unable to lay down, due to a hiatal hernia that she was not a surgical candidate for. If she is eating and not complaining of toothaches that is probably OK too. We took my mom out to a dentist a couple times just a few months before she passed because she did have pain and wanted it treated. If you are allowed to visit her you could see if she is having pain, and they are probably giving routine pain medications. I was in charge of my mom and would have hated it if I had no say - I insisted she stay on her Sinemet because it helped her function better and quality of life, even though that would not have been covered apparently I said we'd pay for it...but that said,there is a time to cut way back on medical interventions, and at the very end she was having a hard time swallowing pills and I wondered about backing off...but it turned out that was actually just about the end. I have to say that I don't necessarily think the goal of any hospice stay should be for death to happen as quickly as possible, but I don't think that's what's going on here. A bruise on the head is probably (not necessarily- unless you don't mean a bruise but a subdural hematoma - they would have had to do a CT scan to see that though) not directly related to being unable to rouse a week later.

So you see what I'm saying - my heart goes out because this is awful for you, but it may well be that brother and staff are not just wantonly making bad decisions and feel terribly attacked and accused and defensive. This is a time of high emotions for everyone. If you really have been told "no" by a judge in those firmest possible terms, you really have done all you can on the medical care issues; and you should do what you can non-medically to be with Mom and make her time as pleasant as you can.

My 98 yr old mother is in a snf and is in hospice. She has lost lots of weight and has dementia but is able to recognize loved ones and even play cards and bingo. She still feeds herself but is in a wheelchair and needs help toile ting, bathing, dressing. My brother cut me out if her care plan so I cannot know my moms condition from medical staff, hospice dr and nurse will not speak with me about moms condition, pro gnosis. I discovered from my brother that mom was taken off her GERD med, and not allowed to have routine dental (severe decay issues, infections) and eye care (glaucoma , macular). They give her eye drops but no monitoring from the eye spec as to the efficacy of those drops. I reminded my brother that this routine care is considered palliative in that it prevents blindness, painful mouth issues, and stomach pain from GERD. My situation is a terrible one mainly for mom who can't speak up for her needs. I battle my sibling thru emails with no good results. Only threats to me not speak to staff about mom and that he's in charge. I have an attorney and have filed motions to the court t o help me get info on mom. The judge has sided with my brother and has declared that I'm micromanaging my mothers care. Mother has fallen, obtained hematomas to her head and was not looked at right away. She was admitted to hospital a wk later, staff couldn't wake her. I will stop here, there is so much pain from the history of this matter. Currently, mom is being withheld comfort routine care and I am powerless to help her.

Hospice also has volunteers that will come in and stay for couple hours so you can run errands or whatever. As for respite care. With my mil they are taking her for a week during 4th because with our business I have to be there to work cause that's where we make our money. So without the help of hospice during that week we might as well just shut the doors for good. And also the people who have come here to our home are the kindest and helpful people I've ever met. They know what families are going through and they adapt to every different families needs. I've already made my mind up that they are being left a donation in future from us. I have. Or come across any hidden fees. In fact they cover things that I couldn't believe. Like meds and briefs hosp. Bed wheelchair Ect. Awesome people. Mom was very spiritual. So they sent out a man to pray with her. She was happy big smile I haven't seen In long time. I'm not all that religious but to see mom that happy he is welcome here anytime.

So, from your original post, you say you just want a break. Home hospice will not be interested in keeping her on any medicine that is only to prolong her life. They send a nurse in to check on the patient, once a week and have aides available, but if something were to happen to her, you call them, rather than taking her to a hospital, you give up her doctors and use only the hospice doctor. They are focused on keeping a patient as comfortable as they can until the end of life. They do often offer what's called respite care, where they can take a patient to their facility for a period of time to allow you the break you need. I would check into local hospices or day centers to see if they offer respite care, even if it's for a day, you would have a little time for yourself.

My mil who I have been sole caregiver of since 06. Now has had major stroke and advanced Alzheimer's. Stroke happened in early march. Rehab sent her home because she wasn't doing anybetter. Well now we have her home she can't walk talk or feed herself very well without my 24/7 assistance & also on mechanical soft diet. Finally homehealth nurses said time for hospice. They started last week. They are my angels from heaven!!!! Please give them people achance. If it were not for hospice now helping mom and me I don't know what I'd do. They do everything that you can't even imagine. I have not had so much support in the last 8 years as hospice has helped me in one week. It doesn't mean that your loved one is gonna pass like Ina week but they are there cause it's gonna happen and they help soooo much. They think moms gonna go within prob. Three to six months and will stay and help through whole thing. So you should really think about it. Her family dr. Would not recommend it if he didn't think was needed. They are there to help keep our elderly people home. And make their last days months or whatever time may be as comfortable and easy as possible. For not only that person but for caregiver also

The reason the hospice can give addictive meds are that there is no reason to worry about being addicted to them. After all..the patient is dying. I'm not family,but i
m all my elderly friend has and it's getting to the point that he's a danger to himself,me and our pets. I am looking for ways to find outside help with this.

cadams, if you think that there are ways in which your mother can get better (as opposed to simply being more comfortable and happier) then perhaps she is not ready for Hospice.

Know that you can drop out of Hospice care at any time. If she developes something new that you think should be treated more aggressively than is hospice policy you can simply withdraw before starting the treatment.

Statistically, hospice does not shorten lives. There have been studies (published on this site) that show persons in similar situations live a little longer on hospice than those who are not on hospice.

My husband was not going to "get better" from his congestive heart failure or from his dementia. My mother is not going to "get better" from her broken hip or her arthritis or her dementia. The hospice care was/is to see that they feel better -- or as good as they possibly can -- as long as they live. They matter to the very end. They don't just "monitor" patients on their way to death, they proactively make that journey more comfortable for all concerned. As a small detail, my husband was getting very bothered by his constant drooling. The nurse immediately came up with a solution that worked great. It didn't cure the root cause -- the dementia -- but it increased his comfort. My mother is having trouble sleeping. The hospice nurse is able to prescribe a sleeping aid and to immediately respond to family observations. We are not waiting to get a message to a doctor and a call back. Everything is streamlined to get immediate action.

My mother is improving more than expected (I think in part because of the extra attention she now has) and it is possible she will leave hospice if she continues to improve, and then go back on it later.

Hospice is definitely a program for persons in the final leg of their life journey. (Obviously that determination can't always be accurate.) If you don't feel your mother is at that point, you may want to defer consideration of hospice to a later time. But if she is near the end I don't think you need fear that hospice will hasten her death.

To vstefans----That was absolutely one of my concerns----I got the distinct impression hospice was more of an agency to monitor patients on their way to death and not at all about getting them better in any way and I am having trouble with that. It feels like it would hasten her death to not get her the needed meds to improve her health. My mom needs a calcium shot for her osteoporosis and I understand it's pretty expensive. Perhaps, a strategy would be to get the things for her now that would improve her well being and then get hospice. Continue sharing your thoughts with me. Thanks for all.

My husband was on hospice in our home. My mother is now on hospice care in the Nursing Home.

I have nothing but positive, encouraging things to say about both experiences.

It is intended for persons who have a life expectancy of 6 months or less, but obviously no one can predict that length of time precisely. Your mother probably qualifies because of the sudden weight loss. My mother qualifies because at 93 she broke her hip and has dementia. That combination puts her in the statistical category of persons who typically die within 6 months of the hip break. I thought it made a lot of sense to take advantage of what she was eligible for. The nursing home staff seems to be working well with the hospice workers and appreciate more helping hands.

Check the rules and regs and the philosophy carefully. Hospice will sometimes not cover meds whose purpose is to extend or improve life other than pain relief. It also may mean limitations on any rehab services or getting Medicare inpatient subacute rehab days. For my mom it was worth it just to not have to have her back to acute hospital care. But she really was dying of a bad heart they could not fix. Hope you find some good help in any way that truly gives you and your mom some good times together for as long as possible!

To get back to Hospice, the pro is better meds. Hospice is able for some reason to dispense "addictive" medications to make the patient comfortable, where the family MD gets red flagged for it. Hospice sends you RN's at least weekly and they have a hotline to an MD; like old fashioned house calls. Hospice is fully covered by Medicare. No hidden charges.
The cons: the word itself "Hospice". Patients say NO as if it would somehow put off the inevitable. Family members think it is euthanasia. It is NOT about killing the patient, it's about removing fear and pain. It's about no more 911 calls, it's about no more rush to the ER. It's about taking time to say goodbye and not living in fear.

dusty , a doc has to deem you 6 months or less left to live to qualify for hospice but in many cases such as heart failure such a prediction is spotty at best . i think i see elder medicine changing before my eyes right now. aunt edna left a physical rehab after a weeklong hospital stay with ' home care ' hot on her heels . it appears to be the same services that were once called hospice. these people came from the rehab place . much nicer people than my previous experience . i think theyre here because with ednas daughter aging and not in the best health herself it appeared that the family carers could use some help .
same thing happened with aps again as in my moms case -- they contact poa and threaten them in advance -- just to keep them on their toes . crazy policy but it works and americans are some common sense people . if it works , we want a boat load of it and we want it NOW .. lol

id ask them to refer to themselves as " home care " since every mention of the term " hospice " is a reminder to the patient of impending decline and death . they can be very helpful to you but beware of the fact that their quality of employees is sometimes much less than top rung , and dont let them bully you or your parent . if they do , take it up with family doc . they are reporting to him and you can do the same .. ask them to call ahead even if only by a few minutes. its basic respect and common sense but you might have to remind them .. always ask the patient if they feel like seeing the visitor today . this leaves the patient in control and is a reminder to hospice who is in control -- the patient.. the patient must be led to believe that they are in control or extreme agitation will result ..
let them operate unimpeded as long as they act like professionals , show your teeth if they cross your line in the sand ..
all costs should be medicare covered .