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Hi Lady, thanks for your insight. I guess I wasn't sure what I expected from hospice except I was looking for someone w/ nursing experience that could be an advocate for Mom. I think we are still setting expectations w/ hospice and I am glad that the Onc is still involved. Mom has been eating totally normal for four days with no throwing up. What a blessing. I know that this will only be for a short time as the aredia that helps w/ the calcium level will soon not be able to keep up w/ what her body is producing. But for now, we have a reprieve and she is back to a lucid state. For a while there, she was not disoriented but she said she felt like she had a real serious flu, kind of foggy. I can't tell you the difference but again, I know this is not going to last and I am trying to remember and keep that in mind. I have been thinking alot about how I don't want Mom to suffer and have to be revived only to be in the same position a couple of weeks later. I have come to the conclusion that I am not able to make that kind of conclusion :) I can't predetermine what is best for her because I don't want to affect her destiny, So far, she has been able to make the decisions on what will happen to her. She said that we will just take one day at a time and not try and plan on what we will do next time but wait to see how she is feeling. I did tell her that although I want her around as long as possible, I don't want her to fight on my account. I want her to be in control over whether she wants to fight or not. Of course I want her to fight, My sister feels the opposite because she hates to see anyone struggle only to be disappointed but success is measured differently by different people and I believe that we are all on the same page in agreeing that Mom can be in control of her destiny to a certain extent and we can respect each others feelings. I am certainly glad that we have had this time, she told us that she changed her mind on being cremated. She didn't think it would bother her but now she wants to be buried next to her own Mother. Lillian, she actually said that she thought cremation would be cheaper and that she didn't want to take away from me & Denise's inheritance. After picking my jaw up off of the floor, I informed her that it was HER money to begin with and if she wanted to cash in all of her insurance policies right now and spend them, I could care less. I want her to be able to enjoy what she worked for, I have never wanted or cared about her money. Money has never been a motivation for me. She knows this but she is always thinking of us. I finally approached my work today about some extra time off, I'll let you know what they say. I kind of went over my bosses head to someone I could actually voice my feelings to. Hope you enjoyed your weekend, we certainly did. I have got huge tomato plants and other stuff growing, it's been fun checking on my garden every day.
Love you,
Dusti
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From: Lillian[SMTP:firefly@islc.net]
Reply To: mol-cancer@lists.meds.com
Sent: Tuesday, May 30, 2000 1:20 AM
To: mol-cancer@lists.meds.com
Subject: Re: [MOL] Bess and Dusti
Importance: High
Gosh, these Hospice programs must each be different. I know when we used them, we had an RN who came in every day and took vitals. She would show us what she was doing, explain why she was doing it, what stage the patient was at, and just walked us right through it all. Both ended up going into a coma and just going to sleep pernmently. It was so peaceful and I knew after the tear's I had did the right thing. It was what they wanted and I was able to give them their last gift in life, sending them off to their maker. It is what sustained me through the grieving process.I had a aide who did the baths, got them up into a wheel chair and took them out for walks, plus fed them two meals. I was the next one on duty and fed the dinners. The aide would have helped with the housework; but I said I preferred that she give all her attention to the patients, to talk with them. She had my aunt singing her head off. She had my mother doing wheel chair exercise. At no time were additional meds called for. It takes the body a week or two to shut down; but the patient is not in pain, (just we are!). I hope this is of some help to you both. lovingly, lillian
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----- Original Message -----
From: Barham, Dusti # IHTUL
To: 'mol-cancer@lists.meds.com'
Sent: Tuesday, May 30, 2000 7:34 AM
Subject: [MOL] Bess
Bess,
Hello there. I wanted to write and tell you that I think the Oncologist really has a big part in this stuff. At first hospice told me that they had never administered aredia at home but after speaking w/ Aetna and the Oncologist, he made it directly clear to both Mom & I that they would administer at home so she didn't have to go to the hospital if she needed to be hydrated. Also, the day before she went in last time, my sister had called hospice and told them how worried she was about Mom's calcium and to please come and test her blood for it and they did! Not her normal nurse lady but a different came and took blood and we had the results within 2 hours. I think the squeaky wheel gets the oil, you know? I'm sure they don't normally do this but they are able to make exceptions. As far as tremors go, do you mean body tremors? I know Mom's hands shake but I know that is just because she is weak. I'm not sure about about body tremors. Is Tom still eating anything? I remember hearing that if your bowels are not working, then some toxicity can build up in the brain causing a little confusion. Bess, I'll close for now. I hope you are doing ok, I know this is a real tough time. Try and indulge yourself in some way, that always makes me feel better. Like a big fat cheesecake or paint your toenails red. Painted toenails always make me feel better.
Take care Bess,
Dusti
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From: BesTom@AOL.COM[SMTP:BesTom@AOL.COM]
Reply To: mol-cancer@lists.meds.com
Sent: Sunday, May 28, 2000 1:03 PM
To: mol-cancer@lists.meds.com
Subject: [MOL] Update on Tom
Dear Friends:
As you know my husband is home on hospice which is doing very little as
far as I'm concerned except providing an aide 4 hours a day, a nurse once a
week who talks to me, listens to Tom's chest, DOESN'T take blood, and
equipment.
Now Tom is getting rather bad tremors. He's on morphine, decadron,
antibiotics for thrush, xanax, a small amount of paxil, and 25 vials of
frozen shark cartilege, and a strong reishi tea formula. Any experience with
tremors among this group? Is it a sign of drug toxicity? Of the disease
itself? Organ failure? Also do most of you on hospice get blood work done.
Tom is housebound and totally oxygen dependent. I know there is no treatment
except what we try at home, but I don't want him to be ignored to the point
of slipping away before his time.
Anyhow, have a nice holiday. We will tryt o do the same. Love, Bess
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