Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 - I am so sorry to hear about the difficulty in dealing with your husband. You are not being selfish, and you have more than enough reason to rant. My mother had Alzheimer's disease, and like a said it is heartbreaking and exhausting to see someone you love in decline and not enjoying life. First, I would revisit the oncologist's suggestion about using sandostatin. I have heard that this can be a big help, and I don't believe it causes any worsening of disorientation or other mental function- although ask your oncologist. That may help a great deal with the cleanliness issue. Plastic covers on furniture covered with sheets to make them more comfortable may not look the classiest but are a help also. When my mother got worse, we first hired a person she new, a lady who had helped her with cleaning to keep her company, take her out for walks etc. Then when she got worse we took her to a daycare facility while we were at work. I wonder if hospice facilities offer this kind of day care? It might be worth checking into. Have you asked his oncologist if the CPT 11 be contributing to his decline, or could he have progression of his disease with brain mets? A while ago I saw a note in a U of Wisconsin cancer center newsletter about a clinical trial to evaluate dexmethylphenidate hydrochloride (d-MPH) to see if it would help to treat chemo related side effects of fatigue, lack of focus and concentration, memory loss and inability to organize daily activities. It said that this was going to include 160 patients arount the country but gave no contact number. I wonder if this or any other medication might help him with his mental function? Take care, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 - I am so sorry to hear about the difficulty in dealing with your husband. You are not being selfish, and you have more than enough reason to rant. My mother had Alzheimer's disease, and like a said it is heartbreaking and exhausting to see someone you love in decline and not enjoying life. First, I would revisit the oncologist's suggestion about using sandostatin. I have heard that this can be a big help, and I don't believe it causes any worsening of disorientation or other mental function- although ask your oncologist. That may help a great deal with the cleanliness issue. Plastic covers on furniture covered with sheets to make them more comfortable may not look the classiest but are a help also. When my mother got worse, we first hired a person she new, a lady who had helped her with cleaning to keep her company, take her out for walks etc. Then when she got worse we took her to a daycare facility while we were at work. I wonder if hospice facilities offer this kind of day care? It might be worth checking into. Have you asked his oncologist if the CPT 11 be contributing to his decline, or could he have progression of his disease with brain mets? A while ago I saw a note in a U of Wisconsin cancer center newsletter about a clinical trial to evaluate dexmethylphenidate hydrochloride (d-MPH) to see if it would help to treat chemo related side effects of fatigue, lack of focus and concentration, memory loss and inability to organize daily activities. It said that this was going to include 160 patients arount the country but gave no contact number. I wonder if this or any other medication might help him with his mental function? Take care, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 - I am so sorry to hear about the difficulty in dealing with your husband. You are not being selfish, and you have more than enough reason to rant. My mother had Alzheimer's disease, and like a said it is heartbreaking and exhausting to see someone you love in decline and not enjoying life. First, I would revisit the oncologist's suggestion about using sandostatin. I have heard that this can be a big help, and I don't believe it causes any worsening of disorientation or other mental function- although ask your oncologist. That may help a great deal with the cleanliness issue. Plastic covers on furniture covered with sheets to make them more comfortable may not look the classiest but are a help also. When my mother got worse, we first hired a person she new, a lady who had helped her with cleaning to keep her company, take her out for walks etc. Then when she got worse we took her to a daycare facility while we were at work. I wonder if hospice facilities offer this kind of day care? It might be worth checking into. Have you asked his oncologist if the CPT 11 be contributing to his decline, or could he have progression of his disease with brain mets? A while ago I saw a note in a U of Wisconsin cancer center newsletter about a clinical trial to evaluate dexmethylphenidate hydrochloride (d-MPH) to see if it would help to treat chemo related side effects of fatigue, lack of focus and concentration, memory loss and inability to organize daily activities. It said that this was going to include 160 patients arount the country but gave no contact number. I wonder if this or any other medication might help him with his mental function? Take care, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Dear : Well this is a great place to vent,and to seek information. I do not know where you live,or what your financial situtation is(insurance ) In is very difficult to be a caregive (spouse) to a cancer patient,ad then to have problems stemming from a stroke,and possible dementia,makes the load doubly heavy.I am assuming you have to work. If you husband has medicare he may be entitled to some home nursing,or how about a support group where there may be a male his age who has similar interest and maybe he feels like he is not going to get well and needs to know that he may be able to control if not cure his cancer. My husband is 73,has mets to both lobes,2 spots on his lung and a mass in several places,but he wants to live,and he is just the opposite of your husband,in personal hygeine. Usually when someone doesn't respond there is either fear or a feeling of being useless. You did the right thing is getting home assistance,hope it's a happy person who can emphasize and cajole. We have lots of family and I work 10/12 hours but they are very good at covering my schedule if he feels bad. We did cpt11,which is camtosar,5FU,Leuc and avastin,we did oxi,plus all 3,we are now on Xeloda which is a pill form. Obviously you both need to make some changes. Is there no family member,or pastor,priest or social worker with you can sit down and seek assistance? Many employers have plans for just such emergencies and can point you in the right direction and help you make a sound decision. You can't go on the way you described,it hurts you both. I am sure other people will answer you in a more positive and concrete manner. I can only say that there is light at the end of the tunnel and you need help,all I can do is offer prayers,hugs and the hope that you will find a solution that will help you both. God Bless Many hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
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