bergdorfblonde - update 9/13 Gary health top of OP

I've been so busy myself and must have missed your update about Gary. I'm glad he's found a bit of relief with the back pain. It sounds like you've really got the ball rolling for his care! I hope some of the suggestions that the peas have posted work. And it's so awesome that you guys had a visitor who were able to brighten your day!
My husband and I pray for you both every evening

Be safe on the road Friday and Saturday. I hope chemo goes well.

The fact that Meals On Wheels can deny service because they deem your area "too poor" is infuriating

I volunteer for Meals on Wheels so I looked up to see if New Port Richey had a delivery service. They do. You have to call and have a home visit. 

www.pascocountyfl.net/369/Request-for-Home-Delivery-Service

We keep thinking of you.. a few good things and a few frustrating things. HUGS!!!

Wanted to help in small way and found this site , as I read about the difficulties in getting meals on wheels.

whatswhatnewportrichey.com/helping-hands-connect-to-local-service-organizations-assisting-those-in-need-week-of-aug-29-and-beyond/

It is a list of organisations that can lend a helping hand with groceries and rent etc, hopefully it is the right area.

You are going through so much and deserve a break.

I’m glad that the chemo has been tolerable. I pray that that continues. And that the antibiotics help the your DD’s cat. 

Our Catholic Church back in Virginia gave $40 worth of staples, free of asking. If you needed more, there was a screening process. But you could get that $40 bag with no questions asked, every time. 

The screening wasn’t to judge if you were worthy, but as a way of allocating resources. The coordinator knew where there was assistance for utilities or rent, fuel cards, etc. she was a very valuable resource. I can’t speak for every church, but it could be worth a try. And no, you don’t need to be Catholic. 

I want to add to the hospice love. I’ve never met a group of more kind and helpful people.

I took care of my mom at the end of her life, and our hospice social worker was amazing at helping us navigate and come to terms with our complicated relationship. I had moved out of her home (at my request) at age 12 and we had no contact again until i was pregnant with my son at age 28/29. I hope they are as kind and helpful to you and Gary as they were to me and my mom.

Been thinking about the two of you a lot. If you lived closer, I’d deliver a “Lasagne Love.” Hugs and many warm, caring thoughts.

Regarding Hospice: Gary signed up last night and they began coming today. The intake guy (I think he's an RN) was very pleasant and personable. We made it clear that Gary was going in 3 weeks for another round of 3-day chemo. He said he'd put it in his notes, and if Moffitt's oncologist wanted to do more scans, we'd have to let them know ahead of time. Fine....... Sounded all great.

A chaplain came today and Gary appreciated it greatly. Then his head nurse from his team came for a long visit. She was quite frank and it was all a bit too upsetting. She said that he should think about even doing any more chemo or going to Moffitt since his prognosis was dire. She said it takes too much out of patients and in the long run it shortens their life. UPSETTING. We have full faith in Moffitt and really wanted to see if this chemo and the next round would shrink the tumors and give him a bit more time. If not, we'd re-think Moffitt.

My question to all of you people who have hospice experience: Was it that frank and upsetting to you??? They've cut out almost all of DH's meds except for a few. They added stronger pain meds, which I understand. They did explain a lot of the benefits of their hospice, but said they'd do chemo or treatment on their own if needed. They won't have a lot of the meds and things that Moffitt has to offer though. Moffitt has oncologists in each department. Hospice has a very experienced oncologist but it scares me a lot. It's as though we're saying that we give up and we're just asking them to make Gary comfortable. It ALMOST sounds like they want him to enjoy life as much as he can and not worry about "more time". That scares me.

When our pharmacist (who is a wonderful friend and extremely knowledgeable guy!!) asked about refilling Gary's monthly meds, I informed him about all of his meds that were stopped and he was shocked. That alone gives me pause.

Any thoughts??

Regarding other assistance: Hospice's social service person will call. We've tried via Moffitt's social service dept, and they said that transportation didn't work out because we were "too close". They DID get Gary a walker. That was about it......

Regarding churches, etc., if an assessment is via phone, I'm fine with that, but at this point Gary isn't going anywhere and he's been in bed most of the time. I've tried Catholic Charities here (no go). I've gone down a huge list given to me by our Congressman's office and hit dead ends with each one. Luckily we DO get some food delivered via The Volunteer Way (a local charity) once a month-mostly canned items and pasta/rice, etc...... They are very sweet.

I'll try to figure my way through this. I've been preoccupied with Hospice for the past few days. I haven't even gotten to shower or wash my hair and I thought that today was going to be a calmer day. I've been on the phone, answering the door and sitting with people since 9 am. Phew!

TIA.

P.S.: Gary has had a rough day today. Must be the chemo finally hitting him, so he's been in bed a lot. He's having a lot of side effects, so we're trying to deal with each one as they come. He's nauseous and hurt and tired. I have a feeling that it's going to keep getting worse quickly.

Hospice is wonderful and caring and I can understand you being upset with what they propose to you. I think that’s a conversation that you and Gary have to have. Is it worth months of pain and sickness and discomfort from chemo versus being able to spend quality time together. A very good friend of mine declined chemo because just like in Gary’s case, they said it could give her a couple extra months. She chose to spend the time she had left not putting all of the chemicals and then having all the side effects in her body. But again that’s something that the two of you have to decide.

It sounds like they have admitted him into Hospice with a terminal diagnosis and less than 6 months to live, as opposed to palliative care. I'm a Florida nurse with lots and lots of experience with Hospice admissions. Did they explain to you that nothing will be covered outside of terminal medications? This is why they have dc'd most of his meds, and discouraged chemo. You cannot have two Medicare benefits at the same time, and what has happened is that Hospice is now the primary benefit, not Moffitt. Chemo will be paid for by Hospice only if they deem it necessary for his comfort. Please PM with with questions about this because it can be VERY confusing. 

Unfortunately, no matter how gentle they try to convey the graveness of the situation, it is never easy to hear. I'm sorry that you guys felt it was upsetting. And much of the time, no matter how frank the doctors are, it's the Hospice nurse that bears the burden of frankness. 

I am so sorry for all you are going through. Please, please, I am urging you to understand your hospice benefit completely. If it was not explained properly please call admissions and ask for the social worker to come out and break it down for you. I have a feeling that things were not laid out properly here. It sounds like Hospice is under the impression that they are there to make your husband comfortable for end of life as opposed to palliative care, which is what I think you were looking for. 

I have no advice about hospice; nothing to share; nothing to give except prayers, good thoughts and warm virtual hugs.

In my experience:

Hospice has been reserved for the people past the point of no return.

That reality can come as a great shock, no matter how much you were expecting it.

At this point, focus is changed to making the patient as comfortable as possible. 

I know some people do maintain in Hospice for quite some time, my neighbor's mother lasted several years, but sadly most others have passed very soon after entering this phase.

That's my experience. I won't presume this is your experience, @bergdorfblonde. Tender, gentle, calming {{{hugs}}} and prayers for peace of mind and body for you both.