Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Hi all, Those of you with families in denial may need to communicate more with the family. Make when Charlotte was diagnosed and went into depression, our kids were in denial also. I had to sit down with them and tell them that their mom would not be around much longer and Charlotte agreed that we mak funeral arrangements, buy a burial plot and do the legal paperwork - all of which we shared with the kids. Yes, we too lost many of our friends - people do not like to be around sick people. I did sit down and tell the kids that mom needed to see them often and they and the grandkids did adapt well. Our pastor at the time suggested making the funeral arrangements and letting the kids know to help them accept it. I even made it a point to drive by the plot and show them. I think it helped then accept the disorder better in the long run - although they were not happy at the time. All of the grandkids accepted Charlotte in the wheelchair and even made a special effort to visit her when they arrived at the house. The two littlest ones always made her special posters and the 18 y.o. checked on her often. It did help me. I think it helped Charlotte. She got to pick out her pretty green casket - I'm surprised she did not ask for a purple one ) Take care, Bill =================================================================== cblanger49 wrote: > Jim, > > You stated beautifully what I have been feeling about being a > caregiver. Rob is slipping a bit these days, but all our friends > keep saying he looks great. His siblings, for whom he has always > been the " glue " keeping the communication going, still depend on him, > not realizing how difficult it is for him to pull together family > gatheringss. The children continue to be self-absorbed and the > younger two are somewhat insentitive to his feelings. Meanwhile, I > must admit that I panic a little when he forgets things, and that in > turn makes be grouchy and I snap and him then feel badly. I dont' > have a solution either, but it's nice to know I'm not alone. > > Carol & Rob > > > > Aida, > > > > I think you've mentioned something that many of us caregivers > feel. It's > > odd, being depressed when someone tells you how well your life > partner seems > > to be doing. I wonder if they don't know what I know or can't see > what I > > see. Of course there are many explanations. The easiest is that > sometimes > > people are trying to be kind. More often though I think that > people have a > > hard time seeing what I see. Like all of us, the patient puts on > the best, > > inside and out, for company and going out and especially for > doctors. It's > > also because I've lived so long with my wife I can see subtle > changes long > > before anyone else. It's Peg's quick glance into a room that tells > me that > > sometimes now she no longer knows her way around our own home. > Others don't > > catch this. It's also because I think our spouses feel they can be > > themselves with us. It's part of having grown comfortable together > over the > > years. The comfortableness may be good news for the patient but > sometimes > > not so good news for the caregiver. On second thought, it may also > mean > > that we caregivers find it too easy to be grouchy with our > patients. We've > > grown comfortable with them too, and have become less afraid to > place a > > burden on them. > > > > Of course there can be a bit of caregiver self pity in all of > this. I > > sometimes wonder if others don't really know what a burden this all > is on > > me. Of course most do. > > > > I don't have a lot of solutions and would be interested in what > others have > > to say. With medical personnel I step in and correct any incorrect > > impressions. I will appeal to our written medical records, > imperfect as > > they may sometimes be. I am not afraid to let senior bosses know > what the > > two of us face. However that's because I happen to trust them and > because > > I'm not afraid of being out of work. And they still need what I > do. With > > acquaintances I do little to correct their impressions. We all > need our > > dreams. With good friends I sometimes indicate that other, less > favorable > > things are happening too, indicating that I trust them in a way > that I don't > > trust everyone. > > > > It's not easy being a caregiver - or a patient. That's for sure. > > > > Peg and Jim from Guam > > > > PS Based on our experience with stopping Florinef, I am sure you > will be > > proved right about Bill's blood pressure dropping. > > > > > > > Date: Fri, 28 Dec 2001 15:31:04 -0800 (PST) > > > From: Aida Ruiz > > > Subject: Visit to neurologist > > > > > Hello: Bill saw his neurologist today for six months > > follow up. I am upset- to put it mildly. His bp was > > 140 standing and 140 sitting. The dr. said apparently > > the central autonomic system had responded, and > > suggested Bill stop taking florinef. Bill was all > > smiles. I reminded them that the last time he was off > > Florinef for three days, his bp fell to 60. When the > > dr. asked if he could bathe, dress, and eat by > > himself, Bill quickly responded " yes. " I was hoping to > > get some assistance at home. Without the dr referral, > > I can do very little. I just can't keep taking care of > > him alone. He told the doctor he could recall no > > falls. He didn't remember passing out in the hall in > > August. We did get a referral for physical therapy > > because I insisted.When I mentioned his legs > > 'freezing " so he couldn't take a step, Bill replied it > > was as a result of the angiogram he had 4 years ago. > > I guess he is still in denial- and I feel devastated. > > Sorry for the long message, but I don't want to be > > angry with Bill. > > > > > Aida and Bill > > > > > > ******************************** > > *** Peg & Jim > > *** # 29 Cruz Heights > > *** Ipan-Talofofo, Guam 96930-4736 > > *** USA > > *** > > *** Note: Guam is 15 hours ahead of > > *** Eastern Standard Time (EST). > > *** 14 ahead of EDT. > > ******************************** > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Bill, I think you make a good point. We told the kids and Rob's brother and sister about his illness and the prognosis when he was diagnosed almost 4 years ago. He has continued to do fairly well, and I think the family has gotten lulled into thinking that maybe it's not really that bad. He does still get around well, and puts his best foot forward when he sees freinds and family, but his illness is progressing and those who do not see him every day don't (or don't want to) see it. So, maybe it's time for me to have another talk with family members and let them know where things are. There are still the well meaning friends who make stupid comments. We recently saw some friends with whom we've traveled to Aruba in the past. When the husband made a comment about perhaps going again in the spring, Rob said, " Well, I don't know, I don't think I can handle that kind of heat now. " The reply was " Oh, we'll just fix you up with a hat and an extra bottle of water and you'll be fine. " Well meaning, but I was ready to smack him! So, I'm going to take your advice and start right now by forwarding some literature from the various web sites we've identified on this list to the family. Thanks for the reminder that I have to do my part to educate others. Happy New Year, Carol & Rob > > > Aida, > > > > > > I think you've mentioned something that many of us caregivers > > feel. It's > > > odd, being depressed when someone tells you how well your life > > partner seems > > > to be doing. I wonder if they don't know what I know or can't see > > what I > > > see. Of course there are many explanations. The easiest is that > > sometimes > > > people are trying to be kind. More often though I think that > > people have a > > > hard time seeing what I see. Like all of us, the patient puts on > > the best, > > > inside and out, for company and going out and especially for > > doctors. It's > > > also because I've lived so long with my wife I can see subtle > > changes long > > > before anyone else. It's Peg's quick glance into a room that tells > > me that > > > sometimes now she no longer knows her way around our own home. > > Others don't > > > catch this. It's also because I think our spouses feel they can be > > > themselves with us. It's part of having grown comfortable together > > over the > > > years. The comfortableness may be good news for the patient but > > sometimes > > > not so good news for the caregiver. On second thought, it may also > > mean > > > that we caregivers find it too easy to be grouchy with our > > patients. We've > > > grown comfortable with them too, and have become less afraid to > > place a > > > burden on them. > > > > > > Of course there can be a bit of caregiver self pity in all of > > this. I > > > sometimes wonder if others don't really know what a burden this all > > is on > > > me. Of course most do. > > > > > > I don't have a lot of solutions and would be interested in what > > others have > > > to say. With medical personnel I step in and correct any incorrect > > > impressions. I will appeal to our written medical records, > > imperfect as > > > they may sometimes be. I am not afraid to let senior bosses know > > what the > > > two of us face. However that's because I happen to trust them and > > because > > > I'm not afraid of being out of work. And they still need what I > > do. With > > > acquaintances I do little to correct their impressions. We all > > need our > > > dreams. With good friends I sometimes indicate that other, less > > favorable > > > things are happening too, indicating that I trust them in a way > > that I don't > > > trust everyone. > > > > > > It's not easy being a caregiver - or a patient. That's for sure. > > > > > > Peg and Jim from Guam > > > > > > PS Based on our experience with stopping Florinef, I am sure you > > will be > > > proved right about Bill's blood pressure dropping. > > > > > > > > > > Date: Fri, 28 Dec 2001 15:31:04 -0800 (PST) > > > > From: Aida Ruiz > > > > Subject: Visit to neurologist > > > > > > > Hello: Bill saw his neurologist today for six months > > > follow up. I am upset- to put it mildly. His bp was > > > 140 standing and 140 sitting. The dr. said apparently > > > the central autonomic system had responded, and > > > suggested Bill stop taking florinef. Bill was all > > > smiles. I reminded them that the last time he was off > > > Florinef for three days, his bp fell to 60. When the > > > dr. asked if he could bathe, dress, and eat by > > > himself, Bill quickly responded " yes. " I was hoping to > > > get some assistance at home. Without the dr referral, > > > I can do very little. I just can't keep taking care of > > > him alone. He told the doctor he could recall no > > > falls. He didn't remember passing out in the hall in > > > August. We did get a referral for physical therapy > > > because I insisted.When I mentioned his legs > > > 'freezing " so he couldn't take a step, Bill replied it > > > was as a result of the angiogram he had 4 years ago. > > > I guess he is still in denial- and I feel devastated. > > > Sorry for the long message, but I don't want to be > > > angry with Bill. > > > > > > > Aida and Bill > > > > > > > > > ******************************** > > > *** Peg & Jim > > > *** # 29 Cruz Heights > > > *** Ipan-Talofofo, Guam 96930-4736 > > > *** USA > > > *** > > > *** Note: Guam is 15 hours ahead of > > > *** Eastern Standard Time (EST). > > > *** 14 ahead of EDT. > > > ******************************** > > > > If you do not wish to belong to shydrager, you may > > unsubscribe by sending a blank email to > > > > shydrager-unsubscribe@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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