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hospice came today

10 years 11 months ago #22216 by Stephany
And, Lisa, I'm sorry I forgot who started this thread! I am happy to hear you've gotten hooked up to hospice. Let us know how that goes. That's the next step for us when we get home, and I'm trying to learn everything I can.

Stephany in Iowa

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10 years 11 months ago #22215 by Stephany
Hey, Julie....I know what you mean. Doran "checked out" a week ago, and I'm feeling pretty lonely. He fell going out of the motel to our first meeting at the CTCA, and was hospitalized here since he fell twice more that day. He's been in and out of it ever since, mostly out. As I tell the doctors, "this isn't my husband!"

They think they have a handle on it, now. (After the weekend, when no one does anything, except the PT people). They are cutting back on his clonazepam, and getting his electrolytes in balance. They are going to fully sedate him tomorrow for an MRI, but are expecting to see metastasis in bone, tissue and all around. If so, they are going to set up a plan for hospice.

Every now and then, I see a glimmer of the real him, and I'm hoping we'll get more, now that they've got him back on his Megace.

The people here are great, and the food is awesome. I just wish Doran could appreciate it, and stop calling me to ask me to take him home. I explain that I can't until we get the tests done, but he forgets.

I just walk him through using the nurse's button, and getting some pain meds, and try to go back to sleep.

How are you doing?

Stephany in Iowa

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10 years 11 months ago #22196 by lisaloo
Hi
I have been on morphine for bone pain and after the first few days have had very few problems (others might disagree).It took about a week to settle down and during that time nausea and tiredness were hard to cope with and I did feel a bit woozy.Now I take a higher dose in the evening and that does make me feel a bit like I have had too much to drink some evenings but otherwise I feel fine.I tried the patches but just couldnt settle on them.
Hope that helps
Lisa

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10 years 11 months ago #22162 by Julie
Julieanne, Hospice is there for the family not just the identified patient. Ask for the phone numbers and talk to the Social Worker about your concerns and your Mother's concerns about your father. They can help with planning how your Father will be cared for. It would seem your Mother's role has been to protect people and now she is in the position of need. It is hard to accept when a person has been a giver to suddenly become the person in need. I keep overestimating Dick's abilities and so does he. I don't know how we can prepared for what is to come even when we here about the struggles people are having it isn't real until we are mired in a similar situation. Then what you have read and heard make much more sense.

People vary in their reactions to morphine and other opiods and you won't know until you experience them. Dick seemed to not have any psychoactive results with morphine his major problem was the constipation which is why he was transfered to the Fentanyl Patch. I have know people on Morphine who do have delusions and hallucinations. Dick is now exhibiting clear signs of hallucinations and delusions. His writing is now impaired and he is highly distractible. He has a really hard time staying on task when testing his blood sugar which is now down to about 3 steps. I have discussed this twice with our hospice nurse and it would seem some of it the action of the cancer. Dick's head scan last week was clear. Also when a persons electrolytes are out of balance you can get all sorts of strange symptoms. Anything can now throw him. His blood sugar levels have to be in the right range. A fever of 99 can derail him. I have to monitor all his calculations for insulin. I had to leave him with my son-in-law for a few hours this evening and when I returned I got his sympathies and a sainthood reward. I don't want an award I want my partner who it seems had checked out. I have a great deal of difficulty understanding the limits of his abilities and continually overestimate them. He overestimates his abilities. At least most of the time he is very agreeable which really isn't like him either.

I hope that Hospice can help your family know what is best in helping your Mom and Dad. Julie

Volunteer Coordinator
ABLSC

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10 years 11 months ago #22130 by julieanne
THe hospice caseworker and nurse came today. I wasn't able to be there, but my sister was. I haven't had a lot of time to talk with her about it but she said it went pretty well. The nurse is planning to come once week for now. It seems that will be ok for now. Mama is trying very hard to put on the good front. However, I know she is having a hard time with handing over responsibilities (who wouldn't). She is so worried about Daddy. As she said, she does so much for him and he needs her. She is worried about leaving him. I'm not sure that any of us are prepared for what is to come. Can anyone tall me more about morphine? She doesn't seem to be as drowsy now but is it the cause of her problem thinking straight and being a little irritable? Or possibly she isn't taking it enough to help the pain and the pain is causing these problems?

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