Hospice

[Sassy]

Has anyone had any experience with Hospice for their loved ones?  I've worked as a nurse for close to 20 yrs but never really dealt with them.  I've heard good things, though.

My dad is failing fast - he was set up with hospice a couple weeks ago - not the one we wanted as there's a waiting list of one year...  Anyway, the social worker & nursing assistant have been great but the RN who is supposed to be coordinating the care has been less than acceptable. 

Last week I called the RN as there was no plan, no explanation of medications, no bowel care instructions, nothing.  He'd come in to assess my dad 2x's.  I asked him to write down all instructions for my step-mother (she is 81, in good shape but pretty frazzled, not getting much sleep etc) as she needs very clear instructions on everything.  He was on a medication for his heart (digoxin) that helps regulate the atrial fibrillation & also slows the heart down - his heart was in the 40's but she didn't know to hold the medication if HR < 60; she kept forgetting to change the fentynl patches (heavy duty pain med) ; when a person is on heavy duty narcotics they become constipated easily.  The nurse should have given her very clear instructions on what to do.

Anyway, I get there yesterday (last spent the day on Friday) no instructions, bags & bags of medications sent through the mail - one pack called "Comfort Pack" said to not open until necessary & put in refrigerator - $600; another bag of suppositories for nausea/vomiting & laxatives; and some liquid Ativan (anti-anxiety) - close to $500; mind you, my step-mother doesn't know what the heck to do with all this - my sister is a nurse-practitioner, I'm a RN, but we can't make heads or tails out of what the plan is for all this stuff...  I finally called the liaison person & said that we might as well stop the hospice as we are getting no help from the nurse - it is total chaos.  I told her that my sister & I would just take over as we don't have a clue as to what they're doing except that we've rec'd 4 bags of meds at the cost of probably $2000...  & who knows how much the nursing care is costing...  my dad has Tricare & Medicare so I don't think anything extra is coming out of his pocket but this is totally unacceptable!  If this is the way these things are routinely handled with families that don't have anyone in the medical field - what in the world do they do?

My dad is not doing well, took a turn for the worse a couple nights ago so don't expect him to make it more than a couple more days.  He has said he is ready to go to heaven & has peace - I will still really miss him - even though we had a lot of differences in our outlook on politics etc.  We do have our faith that we share & he's been a wonderful father - always there for me, always made sure the family was taken care of even if he went without, risked his life for years on the missions he did while in the Airforce flying B52's.  He was always building something, fixing something, taking us camping at the lake where we'd swim & water ski; camping in the mountains where we hiked all the trails; piano & ballet lessons... my mom always wanted to learn to play the piano but never had the chance, my grandmother played by ear...  so my sister & I took piano & ballet - they didn't have extra money but were very thrifty - it would bug me sometimes, ha!  We kept our cars for 10-15 yrs - old furniture - my mom recycled aluminum paper & plastic bags - that also bugged me, ha, always bought everything on sale - but I find myself doing the same things now.  My parents generation wasn't a throw-away generation like ours... 

Anyway, I need to get ready & go, probably will be staying over there as long as I need to...  he lives about an hour away - my brothers & sister live there, also most of the grandkids, great grandkids & have been there to sit with him.   

But back to my original question - what have your experiences been with Hospice?  I'm not real happy with what I've seen - part of the problem my dad experienced that I'm sure contributed to this last episode was that clear instructions were not given - actually NO instructions & my step-mother didn't know what she should have been doing & its been hard figuring out just what she has done or not done - & this latest complication could have been avoided...    if there had been clear-cut instructions which I'd asked the nurse to write out & which he didn't...    my dad wouldn't have gone through such intense suffering over the past couple days...     

[StinkerBell]

Oh Sassy, I am so sorry ****HUG****

I am curious why Hospice is being done in the home instead at a Hospice unit?

[Sassy]

Thanks...  my dad wants to be at home - hospice is often done in the home...  but hopefully better coordinated... one of the problems, my step-mother doesn't remember things & that's why I stressed to the nurse to write down everything & make all instructions very clear - but he didn't bother to do that.  I'd also asked for a "gait" belt - a belt that you put around a persons waist to help steady them when you are helping them get up or down & to help them up if they fall - which my dad has had several falls in the last week...  they never sent the belt, I asked them again yesterday "where is it?"  well, now it is too late, he can't get up & walk, although he was yesterday...

[StinkerBell]

It has been my experience here in WA that a Hospice Nurse comes to the home daily. To help shave and take care of the basic needs to keep intact the dignity of the person. I am truly surprised that no clear written instruction have been left. That bothers me.  Here in our state (this is general terms I speak) I person can have hospice with a couple of stipulations/conditions. One the person will not try anything to extend their life and they have an expected life left of 6 months. Some people only need that daily care the last few weeks. I am not sure where your dad is at, but I highly suspect he may need a reval.  If you feel that you are not getting anywhere with this Hospice group, find out if Tricare has an advocate and start complaining. Plus seeing that it is Tricare I suspect retired military, I wonder if the VA has an advocate for him too.

My heart goes out to you.

It is hard to give good firm advice in a situation like this. The emotions you must be feeling along with the fact that every state and sometimes area does things differently. My experience on personal and professional level has been that Hospice has been a good thing. I only knew of one person last year who I worked with who had at home Hospice. He was only 45 and had CA. He was a PA at the ER so he had a lot of support.

[Sassy]

My dad has terminal cancer that started in his esophagus & has spread - he didn't want chemo or radiation - he tried 6 days of the chemo last year & said "that's enough, if I have to live like this, it is not worth is"  God has given him a yr & 1/2 when the docs predicted he had 6 mo at the most...  that time has been pretty good for him overall - was even able to go on a cruise to Hawaii last spring.  The CA has metastasized to his liver & probably elsewhere...

There has been no written plan of care, no guidance at all with the medicatons - I made the RN write down the meds, dosages, times, what for...  etc yesterday - but his handwriting was so bad, we had to re-do it - we don't know what the orders are, he does - so that's why I made him do it - another reason, because he didn't bother to do it last week...  I complained to the liaison person yesterday & told her we wanted to discontinue if this is what things were going to be like - I'd rather get the orders myself than wait for someone to tell me, who doesn't bother to follow through...  they were really apologetic, made him come out yesterday, which he wasn't planning on doing & are sending out another nurse today.  He was scheduled for 2 baths a week by the CNA - I did all the care yesterday for him - at 1st he was reluctant but he was in so much pain, he let me (had to give him suppository for constipation - probably blockage - he was on the toilet for almost 24 hrs because he was so uncomfortable the night & day before - still able to walk, though weak & communicate - with proper instructions, most of this could have been avoided)  ended up the RN gave him an enema & had to do other procedures due to the impaction... very painful for him, which I don't think would have been so bad if he'd been on a regular bowel regimen but my step-mother didn't know & was just given all the meds...  My dad has a lot of pride & dignity & this was probably his worst fear as the same thing happened to my mom when she was in end-stage CHF...

No, this hospice isn't anything like I would have thought they were supposed to be - just because there are medical people in the family, doesn't negate their responsibility to make sure instructions, plan of care etc are clear - especially for the spouse as she doesn't always tell us everything or remember everything & we weren't staying there round the clock...  anyway, I'm leaving right now, will be staying over for however long I need to - my sister is there right now, my brother was there last night... 

[wingam00]

Sassy, my prayers are with your Father, Mother, your Family and yourself.  My step father in-Law had Hospice and they were a great help to my mother in-law and with my step father in-law. S   I was not directly involved with his Hospice care but I do know that it helped. So sorry that your Hospice care is not going well. 

Mark

[MountainDon]

I'm so sorry to hear of what you're going through Sassy.

Between my K's parents and my Mom we've had 3 experiences with Hospice in the past two and a half years. Ours parents were all in a hospital or heath care/nursing home situation though. So there's a major difference there; no need for them to leave instructions for us. In the case of K's Dad and Mom though, we had to question a few times why certain life extending meds were being administered when both her Dad and Mom had made their wishes to be allowed to die crystal clear.

Most of the nurses and hospice workers were good to wonderful. There were a couple or so who probably should have been in a different branch of heath care, they just didn't seem to have the needed mental attitude.

Your step-mother as final caregiver has a very difficult task. I'm not sure how I'd do in that capacity.

[Daddymem]

Sassy, talk to Mommymem.  She's Hospice. 

[peternap]

Sassy....I wish there was a way to make it easier.
I've been through it 3 times as well, my mother and Jane's Parents. These were like Don's where they were already in the hospital or home. With one exception, all went very well. The exception was with my Mother In Law. The Hospice people kept telling family members things like "she'll be up and about in no time".

Finally I had to sit everyone down and explain that she would die within days. That was difficult.

Keep the faith!

[Willy]

I went thru this with my Mother when she had cancer. They were nice and did all they could in California. When the end was near I wanted my Mother to sleep thru the rest of the time and they told me how to do it. I had a problem dealing with the rest of the family so this did not happen and she sufferd to the end. I hope I never have to go thru this again in my life and when it is my turn it is in writing to not let me go the same way. I hope my love ones don't drag out the last few days and in no way am I telling you to do this. This is a disision you and your love ones have to make together. I know how I want it to end and I want it quite. The last few days are not how I want my familey to remember me by. This is a subject that with some can't be discused but as a nurse you may understand better. It is not easy to see a loved one go. I hope you get all the help you need. Mark

[MountainDon]

Sometimes someone in the rest of the family has a more difficult time in handling the imminent death of a loved one, to the point where that persons feelings get in the way and make the dieing worse for everyone else including the person who simply would like to pass on in peace.  That happened to us. Hospice was good; so-and-so was not.

I know what I want for myself and have made darn certain that everybody else who might think they should have a say in my demise knows it.

[tanya]

Sassy hang inthere these are the things that don't really get better you jsut get through them.  As far as hospice in our fathers case they were great they talked to mom and were an extra pair of eyes and ears so if she needed additional help we knew about it.  As far as those meds go each and every prescription should have clear directions printed on each package.  prescribing doctor, doseage, what to avoid, etc.  Unless things are VERY different in CA.  Here in WA every prescription bottle of medicine or package that leaves the drugstore has all the above information labled clearly, even mail order.  In addition to that the hospice care agency definately has a care plan, otherwise they wouldn't know when and who was supposed to be showing up.  Sometimes I wonder if it just isn't easier to be a bitch right off the bat than to try to be nice and then have to get bitchy to be finally heard at some later hour.  Callt he agency administrator if you don't have your answers byt e time you read this.  They will get them to you.  There should never be any question of how much or when prescription meds and other necessary care is provided. and if you don't get your answers as soon as you contact the adminstrator call the state health care quality assuracen commishion they will get you those answers.  After all time is of the essence. 

[Mommymem]

Hi all,

As Daddymem mentioned I am a Hospice volunteer. Its not an easy thing to do but the family's and patients do appreciate it. As for Sassy's situation with the nurse I would say that is totally unacceptable and I would complain to his boss. The Hospice I volunteer for has social workers, bereavement coordinators, home health aides, volunteers and nurses that visit either in the home or hospital or nursing home. I would speak with the social worker too and mention what happened. At my current patient's house her daughter in law is in charge of dispensing the meds. There's no way she'd be able to keep everything straight by memory. She has a notebook and a calendar that she goes over with the nurse when she visits twice a week. Hospice is there to help make the final days more comfortable for the patient and the family. They stressed in our training that the patient being comfortable is of utmost importance. Hope this is helpful..

Our thoughts are with you and your family, Sassy.

[glenn kangiser]

Sassy asked me to thank you for your thoughts, prayers, comments and concern.  She is unable to get to the net for a day or two.

They fired the first company and got on with another one which has great people and they were very happy with the lady who came to the house. 

[StinkerBell]

That is good to hear glenn.

[Sassy]

Thanks for all your thoughts & prayers - they mean a lot to me.   My dad passed quietly today with family all around.  We tried to keep him as comfortable as possible so he wouldn't be anxious or in pain.  I was taking care of him round the clock since Monday - my brothers & sister would help. 

The 2nd hospice RN was wonderful!  We just had her for 2 days - yesterday & today.  The chaplain for the other hospice came by late this afternoon to visit my dad - he said he was "off duty" - he had enjoyed talking with him so much & thought a lot of our family & wanted to visit even though we were no longer with the company he was with.  He didn't know my dad had died - he sat around talking with all of us for about an hour - a really nice person.

I agree that it is important to keep the pt comfortable - as pain & anxiety free as possible.  Sometimes, the medications depress the breathing & lower blood pressure & speed the death, but that is a possibility whenever you give heavy duty pain medications...  I don't believe in euthanasia but if the comfort measures expedite the going, but give the patient comfort & relief, that's the merciful thing to do.  My dad was really ready & suffered so much for quite awhile. 

Thanks again.  Kathy

[peternap]

I have never known the right thing to say Sassy.
You, your father and your family have been in my prayers and will continue to be!
He had you with him when he made this journey and I think that's more important than any pain killer.

Godspeed!

Don

[Redoverfarm]

Sassy I am sorry to hear of the loss of your dad.  My father will be 83 this year.  I hate to think that I too will be placed in the same position one day.  His outlook on life is good and he comments about the future and states that he has had a good life.  Right now he is battling a kidney with 20% function.  I just hope that I can be as strong as he is when I reach his age. My prayers are with you in this cycle of life.

[MountainDon]

So sorry to hear Kathy. Our prayers are with you.

[StinkerBell]

>>>>>HUG<<<<<

[Sassy]

>>>>>HUG<<<<<

Thanks, I feel that!

It is a "passing of the guard" when both parents are gone...  still not really set in, but am so glad I got to spend the time with my dad, caring for him, working with my brothers & sister & cousin, who is like a sister...  we would sit in the bedroom around my dad talking & reminiscing, laughing, crying - it was really a special time.  We all have the hope of eternal life with Jesus in paradise so we know it's not an ending but a transition - my dad is having a great time reuniting with his family & friends who have gone before him & probably wondering why it took so long in the shadowlands before he went to the place he was created for & longed for...  that gives me great comfort... 

My mom had been so sick for so long - for a couple weeks before she died I kept meaning to go visit her, call her, send her flowers, all these good intentions... but kept forgetting or putting it off because I was busy - then I get the call she was gone...  that is much harder because you think of all the shoulda's...  so don't ever put off doing those little things your heart is nudging you to do for your loved ones, you will never regret it.  Family is so important! 

[Homegrown Tomatoes]

Sassy, so sorry to hear about the loss of your dad.  Things have been so crazy here that I haven't kept up on the forums this week at all....I am really thankful that you all were with him when he passed and that he didn't have to suffer for a long drawn out time.  You're right though; it is so much better to have no regrets about the things you wished you could've done differently afterwards.  You and your family are in our thoughts and prayers.

[tanya]

Sassy I am sorry to hear that you lost your dad I am sure he is going on to that wonderful place and that he will hold you in his heart until you can join him there. 

[CREATIVE1]

Sorry to hear about your ordeal and that it is over.  My mother died in hospice care 3 years ago at 91.  She somehow stayed alive 4 1/2 months, and was so skinny and bedsore-ridden at the end that her whole backbone stuck out all the way around.  It didn't go well. She was in an Assisted Living Facility and I decided to keep her there during her end times.  That was a mistake, since they pretty much shooed out the hospice staff and decided not to give her any morphine.  I was trying to decide what to do when she died. 

I'm so glad to hear that you finally got the kind of care your father deserved all along.  I'll always wonder what I could've done differently.  You did great.

[Sassy]

Thanks for the thoughts...  that is too bad about your mother, Creative.  You expect that things are being taken care of - you had her at assisted living & also had hospice & they still didn't do what they should have done, that is terrible.  We expected more out of hospice - my sister & I - both being nurses, could & did take care of my dad, but when we supposedly had hospice we were thinking they were handling certain things & they weren't.  Some of the basics, like the little sponge thingy's for oral care, pads for the bed, droppers to measure the liquid medications, a plan of care to know what they are doing & what we needed to be doing, a list of medications & dosages & frequency...  for me, those are just basics...   my sister ended up getting the supplies herself at the hospital.  We also ended up with enough medications (un-ordered, mind you) to last 10 people a lifetime...  we were joking, we could sell the stuff on e-bay...  ha  or stand on the street corners selling the narcotics    could've made quite a bit probably...     I'm sorry you mom had to go through what she had to go through - you thought you had everything set up satisfactorily, sounds like...  that's why I'm so glad we were able to take the time off & care for my dad & having experience in health care helped.  I don't know what people do who don't have a clue as to medications, what type of care a person needs etc...  you are at the mercy of the system....