Stage 6-7- Now on Palliative Care in 2 weeks

Babz0226

My DH has been approved for Palliative Care what should I expect from that course of care

His PCP says he is at that stage not Hospice at this time. Has that been helpful to anyone??

M1

Hi babs, one advantage of palliative care is that the practice will make house calls for you. The focus will be on maintaining the status quo, keeping him comfortable, and preventing hospitalizations. Hope it's helpful for you.

Babz0226

Thank you, I guess I will know more as I go on this new road, sooo many roads we go on ...

gampiano

Hi Babz,

I thought my husband was a late stage 6 when i called our local hospice and asked for an evaluation for palliative care. Hospice sent 2 social workers to our home and after about 30 minutes they suggested Hospice instead. This required an examination by the hospice nurse who came the next day. Much to my surprise he met the criteria, Medicare requires stage 7 as you know. The resources that Hospice offers are many. Keep an eye on every new change with your husband. Stage 7 came on quickly for us following 2 whopping UTIs.

Wishing you all the benefits you can get!

Maureen

Babz0226

Thank you, so helpful to know a little of what might be happening. I really didn't know much about palliative care but will become an expect like we do with every stage that we go through. I have read a lot but not about this so a little anxious to see what will happen.

Thank you again,

Babz

Howaboutnow

2 months ago we started palliative care (LO deep into stage 6 with every marker present) via a referral from our Neurologist. Our Medicare supplemental approved the following:

In-home Physical Therapy 1/week (to the extent DH was willing, the intent is to keep him mobile. First his baseline strength and mobility were charted and tracked every visit) -Medicare approved it for 2 months.

Additionally, In-home Occupational Therapy 1/week (made suggestions on adaptations in the house to keep him safe from falling, worked with him to maintain cognitive abilities with “games” and activities, at my request the OT taught me how to lift someone from the floor if they’ve fallen or to help my LO stand as his strength decreases) was approved for 2 months. The OT was renewed for an additional 2 months at 1/every other week. (Our OT has tremendous experience working with dementia. She is very understanding and recognizes the experience we are trudging through. Between visits, i jot down questions i have for her and she always gives me one-on-one time to go over them. These include questions on new challenging behaviors, new medical changes, ideas for how to verbally respond to LO, how to encourage easier participation in ADL’s etc)

I was also offered counseling with a Chaplain and sessions with a psychiatrist to help support me as a caregiver.

In our case, The PT and OT came from the same company. The first meeting included probably 45mins of gov’t required paperwork. My DH is unable cognitively to do the process, so I did as his caregiver. BTW, he is quite sensitive to feeling like others are suggesting he needs help and will become combative and uncooperative. I had the tv on as he sat on the couch just steps from the OT and myself as we did the interview so as to help muffle the conversation. And i asked the OT to help keep our voices down.

All this to say,,,i am at the point where i will try anything available to help get through this worsening trajectory. At minimum, it breaks up the day and brings a new face into the home for DH. But also Palliative care offers hope and support that has the potential for making living with this disease more bearable for both of us. I won’t turn anything down.

Wishing you the best.

Babz0226

Thank you, so informative looking forward to the appointment now.

ImMaggieMae

Is there a time limit on palliative care? Could it be months, years, etc? This is the first time I recall reading about it here. I wonder why it isn’t discussed more often?

Pat6177

I did a little research into palliative care about a year ago. According to their website, one agency defined palliative care as a 1 yr horizon and hospice as the 6 month horizon. And it wasn’t clear if Medicare covered palliative care but Medicare does cover hospice care. I’m not sure if all agencies use those guidelines. I didn’t go much further since DH was just entering into stage 5 at the time.

Gthoma

I'm at exactly same place as Babz. Everyone's comments are so helpful.

Howaboutnow

I’ve been told the approval is done in 2 month increments for both physical therapy and occupational therapy. Then there is a recertification requirement (govt paperwork), where it is determined whether or not each will be renewed. In our case, physical therapy was not renewed. Occupational therapy was renewed. Depending on the experience of the agency you work with, their ability to advocate (hate that word lol) for you could vary a lot. I.e. agency’s that provide palliative care are motivated to get you approved as that is their business. Some are better skilled at knowing the best tactics to get things approved within the gov’t system constraints.

counseling with a Chaplain and a Psychiatrist did not go through the same lengthy gov’t approval process that PT and OT did. But again, all these services were part of the referral our Neurologist gave us to its own hospital Palliative team.

Never was their talk about WHEN palliative care could be accessed. Our Neurologist made us aware of it very early on. It wasn’t until now, end of Stage 6 that i felt like i was sinking that i reached out for it.

PS I should add, there is no out of pocket cost so far for palliative in-home OT and PT we’ve received. I was told DH’s medicare supplemental package covered it. So that could vary plan to plan. We did have a co-pay for the in-office initial meeting with the Palliative PA. Our follow-up with the Palliative PA is scheduled for 3 months after our initial meeting. I don’t know if we will proceed in 3 mo increments going forward to the end. I would like to, as i feel like i have someone tracking us and there’s comfort in that. Prior to palliative, we would see someone in Neurologists office once per year and as you progress with the disease that feels pretty inadequate.

Rocky2

Here is our experience with palliative care. We enrolled DW in palliative care following her diagnosis of cervical cancer a few months ago. DW is early stage 6 EOAD and with the dual diagnosis the decision was made to only do external radiation therapy for the cancer. I did not want to put her through chemotherapy which would have been negatively impacted her quality of life knowing the EOAD was a terminal diagnosis independent of the cancer. Palliative care provides medical assistance for things like medication management, social worker assistance and, if desired, chaplain assistance. Also, palliative care allows treatment for her cancer whereas hospice does not. Recently, the palliative care Nurse Practitioner assisted DW in procuring transport chair and chair cushion as she is having difficulty walking and has fallen often.