I'm confused about Hospice. My dad was recently put in their care without much other than CHF being wrong with him. Has something changed?

In Florida we had an inservice a few months ago about Hospice and the terminal diagnosis / 6 month rule no longer apply.

I too am curious about the whole Hospice thing. They swooped in on me and told me with much fan fare like car salesmen that I would get so much care that I could once again be a daughter and not an exhausted care giver. Well, I have to say, I dont think two 15 minute visits a week to help me bathe my mother do much good. The nurse that comes once a week is pretty good- but wow., nothing like what they "sold " me. Still wonder where are the massage and therapy visits they promised? and the wonderful support of volunteers? well, 2 months in and haven't got a volunteer yet. Also the social worker/ ? she pops in and asks me what I am doing for myself? Oh, and guess what? She is away for her 2 week vacay and will be coming back to find out the answer to that question. Seriously? I think medicare needs to be paying me for the 13 hour days and the other night hours I am putting in. Hospice so far has been very mediocre - Maybe its for the very end. Right now I am dealing with watching my 84 pound mother get worse by the day and experience dying symptoms and all I can think is where in the hell is anyone?

Oh, Anniepeepie, I am so sorry to hear that hospice has not been helpful for you! You are the first person I have ever heard talk about hospice for whom it has not been a good experience. :( You need help! Folks, I don't have the experience with hospice that many of you do -- what would you suggest that Anniepeepie do to get more help from hospice?

Anyone who "swoops right in" sounds suspect to me.

AnniePeople, if you are not happy with your hospice service, you may want to consider changing companies. We have just changed, due to our nurse's change and we definitely see a difference in service. The old company took a month to get a social worker and chaplain to the house. The new company took 2-3 days. Big difference! If you are not getting the services you believe were promised, speak up and ask! We have to remember that they are not mind readers. In my experience, they want to know how to best help you and your family.

c47090:

Your dad sleeps in his power lift chair because CHF or congestive heart failure causes a build up of fluid in the lungs and that makes it uncomfortable to sleep while lying down.

Anniepeepie I wonder if the hospice company is a for-profit company? I can’t believe what they did! With my MIL, a nurse came once a week for the first month. Then a health aide came once a week to clean & bathe her and by about 6 weeks, she was coming 3 times a week to clean MIL. The nurse came once a week until the last 2 weeks I think, then she came twice. The experience sounds similar other than the false promises you were given! I think one nurse who was assigned to MIL was leaving for another job so she only came once or twice. Got a new nurse who went on vacation shortly after. Never saw a volunteer but then again, MILs partner was the one in control and he said no to everything! So maybe they asked and he told them not to come. When you are on hospice, you still need a caregiver, hospice doesn’t provide round the clock or daily care. So I am surprised they told you that! Anyway I think you should look into a different hospice provider!

CHF is terminal and for some people very slow walk to the home office. Hospice was probably called in to keep him out of ER for the breathing difficulties he will suffer from the fluid buildup from his heart not working appropriately. With CHF you have to be monitored for fluid buildup quite often, I monitor my aunt daily and give her medications to help her body to get rid of those fluids( which can also back up into her lungs making breathing close to impossible ) as her hearts not doing its job. Also as time goes on the need for oxygen may become a daily issue, hospice provides all of that, assisted-living generally doesn’t do the weight monitoring, the oxygen checks that your weekly nurse will. At 94 with CHF it’s very kind of your doctor to prescribe hospice and gramdfather will be comfortable whether he lives six months or five more years. I’ve had three clients on hospice for over three years and the aunt in my house is currently on hospice with CHF, Parkinson’s and dementia. It is a godsend not to have to worry about going to hospital when she’s uncomfortable.

Hospice is for people who MAY have 6 months or less to live. This judgement is made by the doctor. If you are unhappy with it or have questions, speak to the doctor. It is difficult to predict how long a person will live. Some people are put on hospice and then later taken off if their condition improves or doesn't get worse. With hospice, the treatment is designed to improve quality of life rather than try to cure what is wrong with the person. There are many benefits to hospice. Please explore what the program entails. You may find that your dad is better off in hospice than not. If he is more comfortable sleeping in the chair-great. At least you don't have to argue with the staff about that.