My second attempt at setting up palliative/hospice care happened yesterday with a visit from the intake nurse from the new agency. She told me when she was still doing field work she had three cases of PSP. She actually knew something about the disease. I felt like this was the place we should be. Someone had a clue.
The work order my primary care doctor’s social worker sent said palliative or hospice. The agency decided to go with hospice. I kept telling the nurse she would have to get the doctor to sign off on this. It may still be changes to palliative to start. I am still up in the air about this being resolved. It should be in the next day or so.
Hospice care provide much more than palliative care. One thing they provide is oxygen. Larry doesn’t need it as of now. The nurse said she would like it on site. I said OK. Forty-five minutes after she left a tank and machine were delivered.
Dear Jeff. Thank goodness you have met someone who can help who has a clue. I know it is a very up and down time for you but just getting something like the oxygen so quickly sounds as if this is a good move forward. One day at a time and look after yourself soon. Love AliBee
That's good news, Jeff. It helps so much to have someone who knows a bit about the disease. Good to hear the agency is showing some efficiency, too. Love and Peace, ec
Congratulations - I going through the same process right now and totally understand your frustrations and obstacles. Having someone who understands it is key. Please do not be offended when I say I am jealous. So happy to hear that you will be receiving additional support in Larry's care. Still fighting the good fight for John.
You will get there. Just have to keep pushing. If you can get someone to come for palliative care first they might see the need for hospice. We were to start with palliative but the intake nurse asked why I hadn’t requested hospice. Told I had. After firing the first group the request to the second agency was for palliative or hospice. The contact for the second agency said she would send hospice.
My son had Kaiser Permanente health insurance. They explained that Hospice provides so much more and every six months or so we could switch back to Pallative, but hospice would provide all the necessaries at no cost. They WERE wonderful.
Good luck.....and what's nice is that you have a phone number to call on the day the RN doesnt' come by...............
I was able to get my hubby enrolled in hospice this past week. So nice to have someone call last week and ask if we needed to place him in a facility with the impending hurricane coming. We kept him home. Ended up just a heavy breeze and some rain for us.
But I like having someone besides me to be keeping tabs on him and his decline. And I'm not gonna lie....I like having a bath aid 3 X's a week! I feel like I've got "back up" if I need it. I hope your's is a good fit too, Jeff!
I do have the help with bathing option. As of now I will still do it. We are up very early daily. By 7 or 8 in the morning breakfast, showers, dressing, changing bedding are out of the way.
I preferred to get on with it myself whilst I could. But it is so good to know there is support there when you needit. Even more crucial for me was having a short break.
Jeff I am so happy for you. This is great news. I have good insurance but no long term care for my wife. So...being in the US, I have no help. Or so I thought. Sounds like I might be able to get some hospice and palliative care. Thanks for sharing this with us.
We are in the US also. Ask your primary doctor about palliative/hospice care. It is covered by Medicare. My primary was resistant to it. The agency decided on him qualifying for hospice. He has a fatal disease with no treatment.
August 26th twenty-five years ago I sat with a much loved friend who was dying. I stayed with him the last eight hours he lived. Was with him when he died. I sort of have an idea what is coming. It won’t be the same. I am not going into this completely in the dark.
I'm glad you have that experience to look back on. My experience with my parents' dying is that it is not something to fear. It is so sad but there were so many blessings and beautiful moments in the midst of those last days.
In reading your posts, I know you are strong and loving. You will continue to be all the way. I think everyone on this post must be in order to go through this. I hope you have friends and/or family to be with you through this.
At least they came to a decision in your favor, such a roller coaster at times with this disease. Just wanted to mention in the US if you are a Veteran there is a lot more help than Medicare have my brother with 100% medical they supply all his needs, he has been on Comfort care now, which is the same as Hospice for 6 months. Ow and to continue until. Take care. Nettie
Jeff, I admire your strength and I’m glad that the new intake nurse is familiar with PSP. One more thing that you don’t need to explain or educate. I hope that this will give you a chance to recharge while someone steps up to help out. You are due for a break. Take it!
So pleased there is more support available at last - you have really battled for this!! So unusual to meet healthcare professionals who have ‘met’ PSP before or indeed have even heard of it!.
It sounds like you've really got the ball rolling here. Hospice is wonderful. We are just starting the process of palliative care. I have an appointment with the social worker to get that going. Hospice is the best thing but I know we're quite a ways out from needing that. I wish they'd give us hospice sooner. They're so helpful. Glad they delivered the oxygen quickly. Even if Larry doesn't need it now, it shows that the agency is on top of things.
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