Hey all -
I just wrote this out and lost it so here goes again. I just got back from visiting my mom and she is worse than I've ever seen her. She has severe emphysema along with her AD and it seems that breathing has become much more difficult for her. She already takes all the inhalers/meds that go with COPD and she is on oxygen. Today, after very little exertion, her oxygen sats dropped to 78. After she had rested for a while, the highest it ever got was 90. I know nothing about hospice but it seems like it might be something that we need. She lives in an assisted living apartment and has an 8 hour aid with her from 12 - 8. Can anyone help me out with info on hospice? What do they do, what do they help you with, might it be a benefit in our case? She is on AD meds, COPD meds, blood pressure meds...would she continue taking this stuff? ANY information or experience you could share would be very appreciated. We were scheduled to go to the psych. tomorrow but the effort of the trip does not seem worthwhile. I will call her primary dr. instead. I'm so confused and upset. Thanks- Sandy O.

I'm so sorry, Sandy. A fair number of our "board-family" do
have direct experience with hospice and can answer your
questions. There should also be a local Area Agency on Aging
somewhere near to you. Google your locale and "Agency on
Aging" and hopefully you can find one. These local agencies
can be great resources on what is available and how to
get assistance, including hospice, in your area.
Good luck, Sweetie--
Carol

Sandy,
I don't have any experience with the hospice thing yet, but as Carol said, many of our other members do or have, so I hope they will be able to advise you on this. In the meantime, I would google the things that Carol has suggested, and I know soon that our friends here should be coming with good advice very soon.

Please know that we are here for you, and let us know how your Mom is doing, and what we can do for you.

Jackie

Hi Sandy,

I found this site to be very helpful when we were looking into Hospice for my MIL

www.hospicenet.org

2 categories I would click on are 1-Frequently asked questions about Hospice and 2- What questions should I ask about Hospice Care


My MIL was recommended for Hospice by her Dr, but you can initiate the phone call to Hospice yourself. They will do an evaluation and then contact your Dr if you prefer. One thing that I learned is that in most areas in the country there is more than one Hospice Organization. You DO get to choose who you like, or if after they start you are dissatisfied you can call another Hospice Group to come in. Our Dr picked for us and we were very satisfied with their assistance.

Mom was kept on all her AD drugs and all other drugs that she was taking. The Hospice Dr did discontinue some of her BP meds after her BP started to fall, but that was expected. They did everything to keep her comfortable, and worked with us so easily that they became a tremendous help and a good resource. Her meds which cost an arm and a leg once Mom hit the drug "gap" were paid for by Hospice once she qualified. We could call anytime day or night and the nurse would respond. The Dr came to her house and checked her as well. And the social worker and volunteers were wonderful as well.

Hospice is available to patients whether they are at home or in a facility and the level of assistance is the same.

12 years ago my Dad was under Hospice care and I was his caregiver and our experience then was not as good. Different area of the country, and I didn't know that you could select another Hospice group. So educate yourself and perhaps speak with her Dr.

Let me know if there are other questions that you have.

I had hospice for my mom who also had severe emphysema and AD. She could no longer understand how to use inhalers, but she did use a nebulizer (with assistance) and was on O2 at 3L. Hospice did not discontinue any of her meds until I requested. Their help was invaluable and I wish I would have contacted them sooner. Do investigate the different hospice orgs in your area and do not be afraid to ask a lot of questions -- a "good" organization will be open and honest and understand the seriousness of your choice, and the need for a good fit between you/mom/them.

Sandy, call hospice and talk to them. You will need a doctors order but I doubt you will have any trouble getting that. Hospice will send a nurse in at least once a week. They also will provide an aide to assist with bathing. In addition they have, a social worker, spiritual advisors and volunteers that can sit with her a couple hours. As for the meds, although they will not stop them, they will only bill medicare for the ones having to do with the dianosis for which she is admitted to hospice and for comfort care of course. Any others, she will have to pay for as usual.

As stated there are usually more than one hospice in any area and you can change if you aren't satisfied. Since you are in my neck of the woods though, I recommend Odyssey Hospice. They are a large organization and are equipted to handle your needs.

Thanks to all who responded. My mom lives in Anaheim so we were looking to hospice organizations around there. I took her in to the dr, and for chest xrays and blook work. She has pneumonia again and is slightly anemic. I know it doesn't sound like a diagnosis for celebration but I'm overjoyed that we can treat it. They are treating her at home (for which I am thankful). I also learned a few things. Elderly bodies often are unable to bring forth a strong immunity response to infection, therefore we cannot use the lack of the presence of a fever as a diagnostic tool (which I did). They also will not necessarily have elevated white blood cell counts on a blood test (which most of us have when we get a bug) so as caregivers we have to be hyper-vigilant. I know I shouldn't beat myself up, but I noticed some changes in my mom a week before I had her to the dr. You better believe from now on if she is slightly "off", I'm going to be hauling her hind end to ER to get checked out.
Again, thanks for your responses. I don't post often, I read nightly, and it gives me great comfort to know that I have you all as my back up!
Take care and God Bless
Sandy O.

Hi Sandy--
That's good stuff to know about our LO's immune
system response. Thanks for sharing.
Good luck, sweetie!
Carol

Hi Sandy, so sorry to hear about your Mom, I will keep her in my prayers. I have experience with hospice, they were there for Mom. My Mom always had the greatest fear of dying in a nursing home, but with the help of all of us though I wasn't able to help much but did what I could, she was able to stay home. She was end stage heart disease and COPD with Vascular Dementia if not more. She was under the care of hospice about 9 months and they were WONDERFUL!!! She had a care assistant that came in to help her with her baths and then the nurse was there 3 days a week unless we called and needed her more. The last 2 weeks the nurse was there to check on her everyday, because she was quickly declining. To help with her breathing she was on low dose morphine with her breathing treatment and this was so much easier, she didn't have to struggle to breathe. Hospice made it very easy on the family with the care they instituted as well as actually seeing her as a person and not just a number. Her doctor will have to order hospice though, you can't just call and say you need it.

Wish you the best.

Hospice is a philosophy of care that recognizes death as the final stage of life and is to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with
dignity and quality, surrounded by their loved ones.
Skilled Nursing Care Facility Karnes
Senior Nursing Homes Karnes
Senior Living Texas

Are there any hospice programs where they will send a registered nurse or equivalent for in home care?