A follow up to my prior blog and a Hospice referral
I talked with Palliative care today and they believe it's time for Jude to receive hospice care. Of course this has me very teary at work. However, the nurse was very kind and explained that this doesn't mean end of life it means extra support. She believes that by providing Jude with extra support he will avoid some of these hospital transports that are so hard on him. She explained that Hospice can provide additional equipment, medications, and possibly even help secure the night nurse. She made me believe that it's time to give Jude support to help him rest easy at home with us. She said "He is very very sick and just isn't responding the way everyone hoped" but she said Jude could easily turn around. That we can always emergency transport to the hospital and that they are just there to put Jude and our needs first. She is a nice lady.
It's hard to talk about these things and I know my husband only hears finality when we discuss situations like this. So if anyone has feedback on using Hospice for extra support and positive stories I think that would greatly benefit our family. So please feel free to leave your story on the blog so we will have some familiarity with this. We will have to make a decision soon. Thanks
8 comments:
I've been so sorry reading all of the news of Jude lately. I know it must be simply exhausting. My thoughts are with you and your family, as always.
A friend of mine had a brother-in-law who went into hospice care. It was The Best Thing Ever. The additional support not only for the patient, but for the family was incredible - and needed by everyone surrounding him.
Six months or so later, I asked how the patient was doing and he had been removed from hospice care. For him, hospice was off and on for more than three years. It improved his quality of life and services were provided in the house.
It's such a big decision, but I'm all for anything that will allow you to get additional help. It is *not* giving up - it's about living better.
usually hospice care means end of life care,to help the family through it however that can be some time! you need all the help you can get,it will be to jude's benifit as well as yours to! IAM sorry that jude is having such a rough time and I hope things will get better.
I've been thinking of you guys a lot lately too. I'm so sorry things have been so hard lately, for everyone. I know I come from the other side of the table, but I personally LOVE (like love, love, love) palliative care. By far my favourite service... In a very gentle way, they shift the focus from "what is going wrong" onto "what is going right", and aim for more of that. Their goal is to minimize suffering and maximize quality of life. Key point here: This does NOT mean that Jude is dying (anymore than the rest of us)! We should all live as well as we can, while we can - this is the message that our pall care team gives us nurses :o)
They have access to resources that you might not get otherwise, and are generally amazing at rallying extra nursing time and respite for families.
I kind of wish we took the palliative care approach for everyone (shouldn't our focus always be on minimizing suffering and maximizing quality of life for our patients?). I say go for it. If it doesn't help, you can always stop working with them...
My Mother was on hospice near the end of her life. My Dad fought against it, but as Micernice said the focus is on living the best way possible.
Jude may come out of it and suddenly do well. You've been through other dark times. It may also be near the time to go and if that happens, you want to know you gave him the best that was available.
Hospice was great for my mom and the rest of the family. My mom was truly at the end of her life but she lived better due to hospice. She was able to have hospice services at home. She was such an up/down patient, she could tank so quickly. They almost took her off hospice right before she died but the nurses reminded the docs how fast she changed. Our family had better support & we coped better because of it. I would recommend the experience to anyone. And I would suggest trying it early, when the provider mentions it, when it has a chance to make a difference. Hopefully a positive health impact for Jude and reduced stress for the whole family.
hoping for the best,
AJ
Do not hesitate to do hospice. My good friend is a hospice nurse and she says the one comment they always get us "we wish we did this sooner." You will get good support. He might go in and then out of hospice when he improves. Not doing because you fear what it means is understandable but a mistake.
My son entered hospice at 21 days old till we lost him a few months later. He was given days to weeks but we all believe just being home with us helped him live and thrive. We luckily managed to ensure one of us was always with him so outside of the regular check ups we used the nursing service only once.Recognizing my apprehensions they managed to get a NICU RN to watch him then.When we travelled with him they co ordinated with other hospice centers in the city so that I had someone to call if needed.Hospice was a blessing especially at the end.I technically only used the basic medical services but knowing I had the option helped.Through all the pain and sorrow we could still make beautiful memories.
Putting a loved one in Hospice Care is not always a bad thing. I put my mother in Hospice Care a few years ago, and she has been living a very normal life ever since. It is sad that she has to use that service and she is not out on her own, but I know she is always well taken care of at all times. Hospice Care
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