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Dreaded Word: Hospice


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Hi Everyone-I have not been on that much since my Mom has been going through her chemoembolizations. We had the first one in Feb and it went well. The second one in May we thought went well-the Dr's @ Hopkins said they are "shrinking"-well my Mom has been in a lot of pain and we upped her Cat Scan Appt @ Penn - yesterday she was told by Dr. Gloom @ Penn that the liver is covered with tumors and some small nodules back in lungs-and recommends hospice. I called Hopkins and they said "are you sure she is reading the scan correctly" after chemoembolizations the tumors don't just disappear-I find it hard to believe that 3 weeks ago Hopkins claims they are shrinking and now she is loaded with tumors... Anyhow we are going back to Hopkins next week for them to scan her with their MRI and see what they say. Mom said if the Dr @ Hopkins tells her they are growing then she is done with treatment.

Just thought I would update since I haven't lately. I was hoping the next update would be great news so I was just holding off.

Dar

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Oh dar,

I'm so sorry. This is SO frustrating and such hard news. I am hoping the MRI reveals more clearly what is going on and that your mom can have some answers soon. I am hoping that there will be some encouraging news. My prayers for your mom and your family continue.

(((hug)))

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Thanks everyone for the kind words

I will keep you posted next week but to be honest I don't think it's going to be good.

I can now feel my Moms liver myself where I couldn't before.

We had a long talk last night and she said she's not afraid to die. She is handling

this very well to be honest. My daughter graduated Kindergarten on Friday and she went with us - I'm trying to keep her mind occupied as much as possible.

I don't really know what to expect and I guess that is what's so scary. I don't want her to suffer if this is truly the end. She said she thinks hospice is a good idea-I told her no that I would take care of her-I don't want a stranger taking care of my Mom. I guess I will talk about that and get some information from those who have been through it when we cross that bridge.

It's strange how we come here to talk to people we have never met face to face even over our own friends/loved ones-who have never gone through it and just don't understand no matter how hard they try.

Thanks

Dar

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Dar, don't be afraid to talk to the hospice folks. My husband has been on hospice since late January. A nurse comes once a week and the doctor once a month. They give Larry a thorough "look over" and give us ideas on how to "tweak" his treatment. We used to have a CNA come in several times a week, but we found, even though we loved her, that she wasn't really needed. We can add her back into the plan as we see fit.

So, anyway, my main reason for posting this is to tell you that you might want to contact them and see what they have to say. You don't have to sign up.

I don't know if it is the same in your state, but our Hospice provides ONLY the level of service that you are comfortable with. And they are only a phone call away, even if it is in the middle of the night.

Even though Larry is still seeking aggressive, albeit palliative, treatment, we couldn't imagine doing this without our Hospice staff. They are the greatest!

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I'm sending big prayers that you won't need them. Honestly, I was devastated when I signed Larry up for hospice when he was in the ICU back in January. But now, 5 months later, I realize my preconceptions were wrong. Their main purpose is to keep the patient as comfortable as possible. And I find that very comforting.

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Dar:

I agree totally with Larry's wife. Hospice is never to be considered a dreaded word. My own palliative care* team has been invaluable to me. They are not substitutes for caregiving, but adjuncts and advisors.

In my case, my team includes my palliative care doctor (who makes house calls!), an oncology pharmacist, an RN who visits weekly, a CNA who comes in two hours a week, a Social Worker and a Spiritiual Counselor who visit bi-weekly (at the minimum and more often if requested). They communicate closely with each other and with me, basically acting as my "safety net." In addition, I also have an acupuncturist, a private CNA (who also gives me massages!) and a mental health therapist.

Quite frankly, I don't believe I would still be alive right now without them.

*Palliative care is for life expectancy of less than one year, and hospice care for life expectancy of less than six months. The latter also includes more services, including massage therapy, music therapy, art therapy, pet therapy, and additional volunteer services (shopping, sitting, transportation, etc.)

The more "outside" help you get for your Mom the more quality time you'll have with her, Dar, and in the end that's what counts the most.

The best of luck and good wishes to you both.

Carole

Life is a Terminal Condition

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i totally agree with checking into hospice. My mom was very hesitant about having them come in for Dad also, but we were so glad that they did. They help you out in ways that you couldnt imagine, right down to taking care of the final details at the end, ie. calling all the approriate people. We also had a CNA every other day, a RN on the opposite days, a social worker and a chaplin if needed and they were never more than a phone call away 24/7!

I know you need to do whats best for your situation, but dont cut out the opiton just yet!

Shelli

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Hi Dar,

I know how hard this is to hear, but I just wanted to give you another perspective on Hospice. Your Mom is probably thinking of you more than herself. It will be too much on you to take on by yourself and she doesn't want to see you stressed out. I would insist on Hospice, if it were me, because I know my daughters would be there by my side, but I would feel bad for them if they could never get a break to do the things they need to do. I think that is part of what Hospice is about..they give the families a break to re-coup and get strong again.

I am very sorry you are having to make this decision..but I know you will make the right choice either way. I will continue to pray for you and your Mom and family.

Love to you,

Bobby

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Hi Bobby-

Thanks for the message-My Mom wants hospice and I guess you are right about the reason why. We have a lot of talking to do this week. I will keep you posted

Dar

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Sorry to hear about your mom. I thought she was actually doing fine. How scarey is that diagnosis form Dr. Gloom at Penn. Let's just pray you get the same resutls as your first one at Hopikins.

Keep us posted. Really upset about this post. But keep positive that the restults will be in her favor.

Maryanne

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