As you know, my father is in the NH with strict orders from the family, and me as watchdog, to make him comfortable with no aggressive treatment. I was there tonight when the doctor came in. He is keeping him on oxygen and breathing treatments to ease the coughing from the fluid buildup around his lungs. He has ordered Ativan and morphine to keep him as calm and peaceful as possible. Hospice is calling me tomorrow. My question is - since the doctor has ordered whatever Hospice would do, and the nurses at the NH will do it, do I really need Hospice? I am sad, of course, but I am at peace with this, as he has lived a very long life, and now he's just suffering, so I don't need their counseling. I don't need them telling him it's okay to let go and all that other stuff they say - I'm perfectly capable of doing that myself. So what would Hospice do that the nurses at the NH aren't already doing?
We had hospice with my dh when we brought him home from the hospital knowing that the end was near. This was necessary for the bed and personal care for him. I had 24 hr care for him for the week and I did have an RN - not connected with hospice - that stayed all day when they told me it was going to be that day or the next when he would die. My experience with hospice was very positive and they didn't try to tell me what I should or shouldn't do they just filled in blanks I would have had about little things. My heart goes out to you, Joan, this is a very sad time for you to lose your dad my prayers for you and your family.
Joan--If nothing else, they are another set of eyes making sure the care is happening as it should be. NH staff can't observe him all the time, but Hospice caregivers and volunteer visitors can help cover more time. Time when you need to be doing otherr things. DH had Hospice come back aboard as soon as his CHF was Dxd. Between the Dr. and them, his meds were regulated to ease him "as needed'. I know from my years Caregiving, it seemed like Dr.s and nurses like scheduled meds, and that's not how it works in real life. Hospice can also answer questions, or get answers, if anything comes up unexpectedly. Don't discount the support they can give if/when you have to actually bite the bulllet to say, "Go by the DNR'. Knowing that's what's decided is not the same as actually saying it. There is probably other information they can provide you,or tell where to look, as you may need.
I had Hospice for both my DH and my Mother and they were both here at home. I had a very positive experience with them and would not hesitate to use them again if the need arose. They did not tell me what to do. Just were available for assistance and any questions I might have. You can always dismiss them if you are not satisfied and in some cases that might be justified.
If my dh had had to go to the hopsital, nursing home or wherever I would have continued hospice services. When my dh was in an ALF for two weeks for my respite care they checked on him just like when he was home. They reviewed the charts to make sure his medications were correct, etc. I can't really say you "Need" them...but, why would you not want them just to be sure he is comfortable if for no other reason. Like someone else said...hospice gives the medications as needed...others don't...And, if he gets very upset...they will stay right with him until they get enough medications in him that he becomes calm. I don't think it makes any real big difference...so whatever you are comfortable with should guide your decision.
I do hospice visits in a SNR. They put an RN and social worker in place and offer more personal care. Yesterday the social worker bothered to ask my patient her favorite ice cream and got it for her. It's just added small things that matter. The nurse is an extra pair of eyes. Hospice puts extra comfort equipment that the facility might not have in place. They know more about end of life issues. Yes-they can be a bit pushy and it is your right to ask them to step back. I didn't like the "after" follow up calls and felt I didn't need them. I have remained very good friends with my husband's chaplain. I didn't realize I needed her. I cried on her shoulder when my cat died because she understood how hurtful another loss was. It wasn't just a cat. The choices remain yours. I hope your dad has a gentle passing.
The issue of end-of-life attentions can be very good. As everyone says, the extra pair of eyes is important. It's free with Medicare, so why not try it? The doctor does have to order it, so it's good that he initiated it.
I was very glad to have Hospice. When DH was bedridden at the end, there was a volunteer with him at all times. When I wasn't there, I was so happy that he wasn't alone.You never know when the end is coming. I wasn't there at that time but a volunteer was with him. That was a comfort to me.
Joan allow hospice to do there work and just take the comfort you need or want from them. They will not be in your way but make this transition for your Dad and you as peaceful as nature will allow. It's one less thing on your plate as you deal with your beloved Sid. Sending you prayers .............none of this is easy.
My experience was that NH nurses were not used to dispensing the high powered medications at a high enough level to keep an actively dying person comfortable. Although there are tremendous negative to the level of medication you need to push in a person expected to recover, those issues don't exist in a person that is dying. Hospice recognizes that. So much of the time, there is not a doctor around (nights, weekends) and you have to depend on the RN's to keep the person comfortable. And the level of medication a person is comfortable dispensing varies from RN to RN. It is really helpful to have hospice in control of the process and have someone to call when it is Saturday night and you are not getting what you think is necessary from the person working that evening.
Catherine, it's good to hear from you again. You and I both joined about July /08, and I always looked forward to your posts. How are your sons and your husband? And you?
One other benefit from hospice is the counseling they can provide to you. I found this helpful when my father was on hospice. It was a very short time, 2 or 3 days, but talking with the hospice social worker was comforting.
Thank you for all of your suggestions and opinions. Hospice was here today and evaluated him. It was the same nurse who evaluated him 3 months ago. He took one look at him and said he would qualify. After examining him and looking over his chart, he said Daddy wasn't in the active dying process at this moment, so he couldn't give me a time line. He did, of course, say that he could aspirate and go in a flash. Anyway, due to complicated financial issues with Medicare, Long Term Care Insurance, and red tape around the world, we decided that the doctor's comfort orders are enough for now. If he doesn't go in his sleep, we'll call Hospice when the actual active dying process begins.
The thing I most regretted was when Hospice came on board, they said we couldn't continue to use his other doctor. It was either them or him. I did appreciate the extra help in bathing and dressing him 3 x a week, .. but he was HOME ... I didn't know how they worked with Nursing homes. Interesting viewpoints from everyone. Even "after" we continue to learn. It is good to know these things.
Nancy may I ask why it made a difference to you about Hospice not letting you use your own doctor? I know that happened with us too, but I really loved the Hospice doctor and he was so kind to me as well as to my husband. Of course, I didn't care much at all for his regular doctor and felt the same way about the VA doctor he saw.
We had hospice for my mom..they didn't come in and tell her it was ok to go or anything like that. They were helpful with us in anyway we needed them, if we had any questions they were there to answer them. And when my mom finally died, they were there to help us with any calls, keep interruptions from the outside to a minimum, whatever we needed and they followed up for a year after if we needed to have someone to talk to...And they can give you some relief when you need it, I know you will want to be close as much as possible but you need rest too and they will make sure your LO is not alone...I would take their help...no question..
My LO was at hospice for 6 days and I couldn't say anything negative about the care,even tho she was comatose she was turned her every half hour,kept her lips moist,changed when needed,the care couldn't have better
It would matter a great deal to me that Lynn's doctor couldn't be in charge for the simple fact that he has been his doctor for years, we have a bond and I trust him greatly.
I fired Hospice. Though I think they provide a wonderful service for home care, I personally do not see a need for them now that Lynn is in a nursing home. The staff here is wonderful and does know how to handle end of life issues. They do it well and with compassion. There is nothing they could provide that I or the staff couldn't.
Of course I am a bit biased, they ticked me off when they told me I had too much hope. What a thing to say....
Judith KB, we were fortunate to have a doctor who visited my husband at home. He would stay for at least 45 minutes, talking to him, but helping me with my issues. He was like a friend, a brother, and had grown fond of both of us. He cared more than most doctors. When it was necessary, we had blood work, echocardiograms, ekg's etc. done at home. He could put my DH at ease and he enjoyed his visits, even though he didn't talk much at all himself. I could see his eyes brighten up when Dr. Kolb walked in the door. The Hospice doctor visited him only ONE time. In the end, I would have wanted Dr. Kolb to declare him, not a stranger - a nurse I had never met before.With her, it was strictly business, and she was demanding I give her all his meds (right now!) and do this and do that., and barked orders at a time when I wanted to crawl up in the bed with him and just hold him. Our hospice group had two doctors, one who did NOT make house calls and the other made frequent missionary trips to Central America. That's where he was the weeks before and on the day my DH died.
They are all different., and remember, we were in the Hospice program only six weeks. I do understand that most people develop very special relationships with their Hospice team.
Re: the Chaplain, ... we were closely affliated with our Episcopal Church and twice or more times a week, someone from the church came by. He received Holy Communion and the Last Rites were administered by our Priest. We explained to the Southern Baptist minister who called that our church was very much involved in his life and we appreciated their thoughts and prayers, but preferred to continue with what was more familiar (somewhere) in his mind and soul.
We're are all different, but we are all part of the same loving group of caregivers. It's what works best for each of us. At the end, I believe I was just on 'auto pilot',.. and it had been a mighty long flight.
Thank you Nancy for your reply. I certainly understand your possition and I would have felt the same if we had had a long relationship with my dh's doctor. They become almost like a family member and someone you are very comfortable with. That is how we both felt about the doctor we had before we moved and he was the original one that gave Jim the dx. I didn't care for Jim's main Hospice nurse, but the doctor I liked alot and the gal that came to bath him, etc. he just loved her. The main Hospice nurse kept saying he wasn't that bad and would be around for a year or more. I kept telling her she didn't know what he was like before and he wouldn't make it past the first of this year and he died at the end of Aug. The Hospice dr. and the main nurse came about a week before he died to tell me I could take him off all meds and that he probably wouldn't last more then 2 weeks. The doctor commented that "we" (meaning the Hospice staff) have to learn to listen more to what the spouses say about AD because most of them don't have alot of training in the AD situation.... they administer to mostly cancer people.
My dh only had Hospice for less then 3 months also. Also, my church is a high Episcopal Church and I know they would have come to see my dh, but he was a died in the wool Baptist and I knew he didn't want them to come. You are a brave soul and you did all the right things. But, I know exactly where you are coming from with wanting those you knew and he knew to be with you.
Joan I am so sorry you are having to deal with all of this. AD is sometimes like a roller coaster ride. My dh has been on Hospice a couple of times and then bounced back to a point that he was doing "too well" to stay in the program. Luckily there were several programs for us to use. One thing caught my eye in your statement and that is the mucous issue. My dh has always had this but it has gotten progressively worse over the last two years. We use a suction machine when it gets really bad. However, now the mucous shows up daily especially during sleep (when on his side the bed ends up soaked along with the pillow) and when eating. If he drinks two glasses of liquid a day now, I feel we have accomplished something. DH will eat a little or drink (thickened drinks) a tablespoon of something and begin to cough and then spit up lots of mucous. Is this what your father was experiencing? We have a nurse visit tomorrow to see if he needs to go back to Hospice. My opionion is that we need to use the various programs as we feel they will help us. Most people I know that have used Hospice found it very helpful and supportive. You can always stop it if you find it is not what you want or need. Thanks