Your opinion of hospice care?

[KoocheeKoo]

The reason I'm asking...

About six weeks ago, my 90 year old great aunt (whom I've cared for since her husband died last year) was admitted to the local hospital suffering from severe nausea/ vomiting/ weakness. Doctors quickly diagnosed gallstones and infected gall bladder. After debating and running tests for several days, surgeons decided there was no way they could operate; my aunt has a bad heart and almost died from anesthesia for a minor procedure (GI series).
To complicate matters, my great aunt has now been diagnosed with terminal cancer in her intestines (since leaving the hospital). Also, she hasn't eaten (more than a few bites at most) in more than five weeks....weight has fallen from 105 lb to 87 lb in the past month.

At the time she was being discharged (three weeks ago today), all of my aunt's doctors.....her MD, the cardiologist, the gastro (stomach/ liver), pulmonary specialist, and urologist all recommended a hospice for my aunt. At the time, I opted in favor of a skilled nursing/ rehab center.....hoping for a miracle. I now realize the doctors were correct. In addition to all her illnesses, my great aunt is also totally blind (from diabetes). Since entering the nursing home, she has fallen twice, and the last fall (Friday a.m.) was serious....requiring 15 stitches and a trip to the ER (I'm amazed she didn't fracture her skull).

Here's my dilemma: my great aunt still has some mental faculties....except she is suffering delusions (doctors explanation); can't seem to understand she is dying. That's the reason she keeps falling....thinks she's well, and tries to get out of bed and reach the restroom; says "I'm 90 yrs old and am as well as ever" (also says she's eating everything on her plate; when the reality is she is eating virtually nothing). Sadly, she also seems to still believe she'll get well and go home.

While my heart says hospice care in the nursing home is best for her, I have reservations. First, my grandmother is concerned the hospice folks will "starve" my great aunt. I've tried to reassure grandma not only is that illegal, but something I'd never allow. I don't want my aunt to die....but also don't wish to see her used as a guinea pig (feeding tube, dialysis, etc); especially since her own living will states clearly at the time doctors deem her condition terminal, she wants all forms of life extending/ support to be stopped.

I'm also scared to death unless hospice care is brought in soon (providing adequate medication to properly sedate/ provide pain relief to my great aunt and stop her from getting out of bed), she's going to fall and fracture a hip or pelvis. If this occurs, there's no way surgeons will attempt to operate....not on a 90 year old diabetic with a bad heart. My great aunt would lie and suffer horribly until either infection or pneumonia ended her life (which happened to a good friend of mine's grandfather last year 🙁

I could have listened to the doctors three weeks ago and admitted aunt Millie directly from hospital to hospice....but I listened to my conscience; wasn't ready to give up....I wanted to give her a second chance. I now feel badly, because if I had done what doctors recommended then.....she wouldn't have fallen and wouldn't be upset by being badgered by nurses to eat (when doctors say she CANNOT eat; is too sick) or take physical therapy (when she is too weak to even stand up?). This is a lady I love dearly; is more like my
grandmother to me than aunt.

What I'm asking.....do any of you have past/ current experiences with terminally ill loved ones recieving hospice care, especially in a nursing home enviroment?
(or work/ have business dealings with hospices). Any information and advice will be greatly appreciated.

Sincerely,
Perry

 

[steph]

Hi Honey~
Sorry to hear about your aunt. I don't know how it works in GA, but I've worked with several patients assigned to hospice care (My hospitial calls it "comfort care" because the emphasis is on just keeping the patient comfortable during their last days.)

These people are specially trained and truly care about their patients, IMHO.
In your place I'd go w/the hospice care. Your aunt was wise enough to put her DNR/Living will in place. By law, the hospital must abide or you have grounds for a lawsuit~the LAST thing any hospital wants...Good luck sweetie~I hope Aunt Millie's passing is speedy and painless.

XOXO

 

[KoocheeKoo]

Thanks Steph! 🙂

This is a nightmare. Aunt Millie has no children and is a widow, so I'm the one who has to make difficult decisions. Granny and I are all aunt Millie's got (except sis way up in Oregon); Granny's blood sugar is sky high (300+), but she refuses to allow her MD admit her to the hospital (wants to be there for her little sis). I'm scared to death I'm about to lose both of them. 🙁

 

[Oddjob0226]

Luckily for me I've never had to deal with this, but both from what I've read and the old friend-of-a-friend kind of thing, hospices are generally a great place for people to be. The people who work there often are there voluntarily, rather than they being nurses and PAs who were low-scoring in medical school, filling time at a nursing home, something like that. Steph surely knows more than I about this - well, about darn near EVERYTHING, in fact - but from what I understand, the people working at a hospice go into the situation fully knowing and aware what it is about, so you know that they are really comitted to it.

 

[TikleBelly]

I'm sorry for the situation you are in, making decisions that are so important for a loved one.

Here is my personal experience with Hospice.

I lost my father 7 years ago when a kidney transplant that he had for almost 10 years failed. At the age of 83 he was not eligible for another transplant and due to other complications he was deemed terminal. Accepting the short term inevitability of his death was the most difficult part of the process, but once my family realized what his future would be, we knew what he would have wanted was Hospice.

Thankfully there was an excellent Hospice facility in town that took great care of him. He only survived another two weeks before his passing. I have never regretted the decision to have him in Hospice. I know that was the best way to make sure that his last few weeks were as comfortable as possible. Not only does Hospice ease the passing of the resident, but also it gives wonderful support to the loved ones, preparing them for what will happen.

I only can hope that when it's my time to go that I can go as peacefully as my father did.

Mark

 

[TklDuo-Ann]

Perry... First of all, let me say how sorry I am that you're having to go through all this. It's not an easy task. I hope you're taking time to care for yourself as well as your aunt.

Having had many people I know in hospice and working a couple of hospice cases myself, I can easily say that it is a good option...quite possibly the best. The focus of hospice is to let the patient live their last days/weeks/months with as much comfort and dignity as possible. They do nothing outside of prescribed law or the wishes of the patient or their proxy. If the patient has no written wishes and no proxy, it is assumed that all forms of normal care should be given. The only thing they don't do is extraordinary care...CPR or anything like that...which would bring them back if they go. Those who work in hospice departments are some of the best and most dedicated and compassionate people there are.

I think you can be very confident in placing her in hospice.

If you ever need to talk about all this, give a yell.

Ann

 

[Myriads]

When my mother was diagnosed as terminal (Cancer of the everything) back in '90, she was fully aware, and had zero mental issues as she was only 60. She opted for Home Hospice care.

It went as well as any such thing can. The nurses were great, they provided top notch care (including on the mark pain relief when the time came) during the days when I was not there. I can't imagine the Hospice care facilities being anything but as good.

You gave things a chance, and have now realized the truth of the situation. Thats a good thing, as it will give you some piece of mind in the coming years when you look back you'll never have a doubt that "You didn't give everything a chance". Now Hospice will take care of your aunt, and they will do it well.

This is never an easy period. My best for you and yours.

Myriads

 

[ticklkitten]

Before my mother passed away she was a nurse who worked in a hospice... she was one of the greatest souls that ever existed. I have to say that the people who work in a situation like that are amazing. You couldn't do it if it wasn't something you were good at. And from those facilities that I have seen the care seems top notch. These people try their hardest to make sure their patients physical, emotional and spiritual needs are met. My prayers are with you Perry.

 

[bratgirl365]

Let me start by saying how truely sorry I am about your situation. Life has a funny way of sometimes giving us more then we feel we can chew! With that being said, I think Hospice is wonderful.
My mother was diagnosed with terminal cancer 10 years ago and we opted for Hospice...(my mother was in her right mind till the day she passed). These nurses were great, and very compationate.
My sister also was diagnosed with cancer and again we opted for Hospice, recently my sister passed and again these nurses were great!
My sister sometimes experienced delusional, and the nurses just knew how to handle that when all of us were falling apart.
My families experience with Hospice was a good experience.
I believe in what they stand for....dying with dignity.
Good luck and may God be with you and your family during this time.

 

[DGF1976]

I'm very sorry about your Aunt. Last July my Aunt passed away while in hospice's care. I spend lots of time visiting her and I can say they the people were great. Since I work very late sometimes, and am a night owl they let me stay very late, were great to me and my family, and most importantly, my Aunt. I will always be very greatful to them.

 

[KoocheeKoo]

My humble thanks to each and every one for the kind comments 🙂

Perry

 

[QBWeaver]

I'm so sorry to hear about the situation with your aunt. I have experience with Hospice care and I can tell you they were just fabulous for us.

My mother got a terminal brain cancer last year. It came on suddenly and grew fast. We did surgery and she tried chemo/radiation to buy a little extra time but God had other plans.

I don't have experience with Hospice care in a facility. We had hospice at Mom's house for the last few weeks of her life. We did it at home but that was our choice. I just lived with her during the week and worked from her house. I have a job that was flexible enough to do that. Then my brothers came in during the weekends to give me a day or two off.

The hospice folks were wonderful. They came as often as we wanted. They'd make sure all her meds were filled, so I didn't have to worry about it. They'd give us recommendations on what to do and how to help Mom especially when she'd get confused or had trouble talking. They knew lots more than we did about how much longer she had. We thought she'd hang in there until around March but she passed away on Christmas Eve. We had everything there including bed pads, meds to ease her breathing when it got too fast, and they were wonderful. The Hospice folks made sure we had everything... just in case we needed it. And we did.

Don't second guess yourself. You made the right choice at the time you made it. You made that decision out of love and that can never be wrong. Try to enjoy the time you have left with her. Her confusion and frustrations will be hard on you. I know. Just remember that you have to take care of yourself during this time as well. She is in good hands and is obviously surrounded with a very loving family. Keep in mind the times when she had all her facilities and don't let this period of time taint your loving memories of a wonderful lady.

God Bless you and your family!

Jan

 

[ticklishbbw]

First of all, I'm sorry to hear of the situation. I know it's a difficult situation to deal with.

I recently had a former employee, who was also a dear friend, pass away while in hospice care. She also had terminal cancer, and her mind and body started withering away, just as you described. When her doctor gave everyone the news that she just was not going to get better, he recommended hospice care.

I visited her at the hospice and let me tell you, if I have to die somewhere other than home, I'd like it to be there. The places, or at least the ones around here, are made to feel like home. They do not have the impersonal medical facility feel to them. She still rec'd medical care and nursing assistance just like a hospital, however she was in a home-like setting. This specific place even had small living room and kitchen facilities throughout so she could be moved and spend time, or a home cooked meal with friends and family.

Not long after she was moved to hospice, she really lost all mental function, so I doubt she could truly appreciate her surroundings. Sure everyone would rather die at home, but if that's not an option, hospice is much better than a hospital or nursing home.

 

[kis123]

Hey KK,

My thoughts are with you during this time. My mother died from breast cancer 10 years ago (august) in hospice care. It was an old nursing home run by catholic nuns and the care was phenominal. They took excellent care of her for the nine short days she spent with them. She was bathed daily and clothes completely changed twice a day. They had gotten her off the pain meds and she was appearing a lot better. But pneumonia got finally got the best of her and she died peacefully in her sleep.

We tried to take care of her at home, but her needs we just too great for the family. I feel she was well taken care of and died where she wanted-she didn't want to die at home.

Allow your aunt the same dignity and let hospice do what they're trained in best-palliative care until she goes.

I wish you well during this time.