Hi, my mom was put on hospice in June. At the time, while living in a memory care unit of an ALF, she suddenly got ill with gastroenteritis. After that illness she moved into the next stage of AD. Shortly after that trip to the ER is when her MD requested hospice as she had lost 10 pounds in 5 months and shortly after the ER visit she became non-ambulatory, became mostly incontinent, etc. All bloodwork and test came back normal. She's only on Thyroid and benazepril.

I know hospice is supposed to be for 6 months only and if needed it can be extended. Any experience on hospice and AD would be appreciated. Her MD did put in for another 6 months today after her doctors visit, but I am worried it might be rejected. She doesn't feed herself anymore and is now totally incontinent and fully wheel chair bound which is how he justified doing 6 months more of hospice.

I want hospice to continue because I don't want her taken to the ER for every little thing that can be managed by a nurse coming in to see her and because they have done a great job at helping me with her care (my mom lives in a small residential care home with 5 other AD patients). I can't imagine her not being able to have hospice since I am the only remaining child and family member that does anything for her.

Anyone know how Medicare handles hospice for AD, do they usually approve the extension or are they likely to reject it. With AD you can't tell how long they have, even if they have a downturn it can stabilize a bit and they can go on for a very long time.

Thanks,

Hi Karey,

You have a very valid concern. It is important your mom is cared for in these end stages. There can be a lot of complications and it can be very difficult to send a patient to the ER for every issue.

There are many cases when hospice must be extended. It is very hard to predict when someone with a terminal illness will pass and because of that there are usually extension policies. This is especially the case for Alzheimer's disease. Each case will be different so it will be important that you talk not only with the doctor about this extension, but also work with hospice to learn more about the criteria for an extension.

Please talk with both the doctor and the hospice team about your concerns. Let them know why you feel your mom still needs hospice when they are assessing the case. Also inquire more about what is needed from you to make the extension happen.

Call us anytime you wish to talk more about what you are going through with your mom. We are here 24/7 and can help you through this rough stage of the disease.

Also, it may help to hear from other Caregivers who have been through this situation. I would recommend that you post your question in the Caregiver's Forum where you will hear from other caregiver's.

Bests,

Thanks so much. I posted it in the caregivers section also to find out the experiences others have had. Do you know if there is any lobbying or legislation that anyone is working on with hospice for AD patients? Just curious.

I am sorry Karey, I do not know of any legislation or lobbying off the top of my head. But I will research this and see what I can come up with for you.

Bests,