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Medical Forum / Diseases and Disorders / Alzheimer's / December 2005Doctors 2nd Opinion
I have posted recently on lack of communication problems I have had with the Nursing Home here in australia where my Mum Lives and my frustration with the Home the Dr etc Below is a copy of part of the post" Aricept." Quote: I feel cheated and very disillusioned tonight.When we first placed Mum in this facility there was a different Director of Nursing and I was always singing her praises and that of the home,but in the last few months have noticed a lot of changes and jump up and down but now feel it is falling on deaf ears. I have made a appointment with my Mums old Dr here for a second opinion a thorough checkup and a look at the mess that is left from the removal of a cancer on her scalp some 2 months ago at which the Dr did not get it all and for 2 months every time I ask what is going to be done I am told when the area has healed well its not healed yet? So maybe I will feel better after this second opinion or perhaps the familiarity of discussing the issues with a Dr I trust. My advice now to anyone would be if in doubt or you have a gut feeling something is not right always take the time to get a 2nd opinion. My reason for suggesting this is: I took the copy of the report on the skin cancer on Mums head(that I was only given when I asked for it 5 days previous) to my Dr with Mum. I had read the report but it meant nothing to me . Mum has a Squamous cell carcinoma, 9X5X5 mm The tumour is situated in severely sun damaged skin showing downward invasion of tongues strands and nests of severely pleomorphic squamous cells. Yes well now my Dr has explained the nastiness of this cancer I am even more upset and enraged that I have been fed (bullshit)Aust slang ,for 2 months now. No upset really is a minor expression for how I feel. I feel devastated,let down and deceived. How dare this Dr at the nursing home play god and decide as is now patently obvious that as my Mum is in the later stages of AD that not only was he not going to even dicuss this with us but that he has no intention of referring to a specialist. My Dr has explained all the options and after discussing this with my Dad no we will not persue any further treatment which could be very nasty. I guess I feel more sad that in Mums earlier years she fought Cancer and won and now this has come up and I couldnt do anything to beat it really this time. Sorry for such a long post Michelle, I am so sorry. I can just imagine how upset you are at the doctor who "removed" the cancer---and I know upset is stating it very mildly. Will keep your mom and family in my prayers. Gwen >I have posted recently on lack of communication problems I have had > with the Nursing Home here in australia where my Mum Lives and my [quoted text clipped - 42 lines] > really this time. > Sorry for such a long post Oh, Michelle. If nothing else, Doctor #1 should have explained this to you. It sounds like now that you have the facts you agree with his decision not to treat the cancer more aggressively, but you should have been able to participate in that decision. Not to mention going two months with an unhealed wound on one's scalp is bound to be painful. (I am currently suffering with what is called steroid rash over my whole body and it's enough to make anyone bonkers in itself!) On the other hand, and I don't mean this to sound callous, I think it is sometimes a blessing when Alz patients develop something else that may end their life sooner. Alz can be insidiously slow, and I wouldn't want my Mom to live in the advanced stages for years on end. If she could be kept pain-free -- that is the key -- I would choose not to aggressively treat a terminal condition to preserve a questionable quality of life. Every family must make its own choices, however, based at least in part on their religious beliefs. I am fortunate that my parents have made their views on the issue clear so that I can act for them in clear conscience. My thoughts and prayers are with you and your family. Songbird > Oh, Michelle. If nothing else, Doctor #1 should have explained this to > you. It sounds like now that you have the facts you agree with his [quoted text clipped - 20 lines] > > Songbird Songbird if I have forgotten, forgive me, but how did you ever make out with your Dad and Mother moving to that assisted living place? Did they eventually do it?  SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Thanks for asking, Evelyn. They moved to a place that is independent living, but does provide 12 meals a week and housekeeping. Or so I understand. They told me they were moving there Nov. 1, but they have had no contact with me since then. I have sent cards, emails, etc. Perhaps I should pick up the phone, but they have made it very clear they want me to play no part in their life. Dad claims I was bossing him around, so I am allowing him to dictate the terms of our relationship. Two days ago I learned from a friend that Dad had a serious car accident several weeks ago. He's fine, car's totalled -- second time in six months. Of course, Dad has not contacted me about it. My brother, who is supposedly to be the one keeping me informed until Dad comes to his senses, has said nothing. WHether that means he knows anything about it wither, I don't know. He is not returning phone calls either. His interim church job is coming to an end -- the Bishop is asking him to take on a new assignment. I just can't begin to express how furious and hurt this all makes me. It's very hard to have your family choose to have nothing to do with you. That's why I haven't posted much lately, though I have been lurking and thinking of all of you. Songbird > Thanks for asking, Evelyn. They moved to a place that is independent > living, but does provide 12 meals a week and housekeeping. Or so I [quoted text clipped - 21 lines] > > Songbird Songbird, I am so sorry it has come to this. Denial runs deep. My father who is almost 93 is no better. He still likes to believe he can drive, and actually has done so on occasion. He has been a difficult and abusive person all his life and NObody can tell him anything, even my sister whom he used to listen to when he had a half a mind to. Now the only person who can work with him in any way is the lady who is sort of his caregiver. We are all told to "butt out" in no uncertain terms when it comes to anything regarding his autonomy. Sometimes you just have to back off when someone gets like that. My sister and brother and I are letting his lady friend call all the shots. At least she has some sense and he does listen to her.... sort of.... We all care about you here, and I am sure I am not alone in wishing you the best and in feeling sympathy for the whole situation. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Songbird, I know it hurts. But you know you have done the best you could do. They are the ones who really pay the price for not letting you help them. Try very hard not to worry. Gwen > Thanks for asking, Evelyn. They moved to a place that is independent > living, but does provide 12 meals a week and housekeeping. Or so I [quoted text clipped - 21 lines] > > Songbird > Dad claims I was bossing > him around, so I am allowing him to dictate the terms of our > relationship. but i thought YOU had the medical POA for your mother, NOT him? are you letting him make her medical decisions? >> Dad claims I was bossing >> him around, so I am allowing him to dictate the terms of our >> relationship. > > but i thought YOU had the medical POA for your mother, NOT him? > are you letting him make her medical decisions? Hi Dennis, Don't forget that her father is not suffering from (diagnosable) dementia and is quite capable of changing the POA at will, it is just that at this time he THINKS it is not applicable or in effect yet. It's a reasonable compromise Songbird is living with, at least until they "make up" with one another. At least she knows they get one decent meal a day in the place where they are. It's just that there was a better place that had a higher level of care that she wanted them to go to. When they aren't listening to you at all (like her father is) and have the idea you are trying to run their life, sometimes it is better to just back off a little and hope they disabuse themself of that idea for a while. Besides, her brother is presently coming to the fore, and that isn't such a bad thing either. Before he didn't want to know about any of it and only Songbird was the "bad guy". Dealing with someone who doesn't have AZ but is just in denial about his age and abilities, is different than dealing with someone who has been diagnosed. Her dad isn't sick with AZ, he's just stubborn and refuses to accept the limitations of his age. It's her mom that has the AZ. My father doesn't have AZ either, he is just a cranky stubborn old guy who doesn't want to give up his iron fisted rule. There are a lot of parallels between her situation and my own. My mother died in the year 2000, and I wished for years that I could've done more for her. She doggedly let my father call all the shots right up until she died, and she didn't have alzheimers either. I can really relate to Songbird's scenario..... almost too well! SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Thanks, Evelyn. Part of the problem with Dad is that unless it was *his* decision, it's wrong. Case in point (which also relates to the ongoing thread about learning new electronic devices): After a trip to the ER, he finally agreed it made sense for him to have a cell phone in the car. I told him I could get him one on my family plan cheaper than for him to get one on his own, so he agreed and asked me to get him one. I picked him out the simplest one with the largest buttons I could find. He never could figure out how to work it, even after I sat down and explained it three times. When he had his big wreck, he did not have it with him. Shortly after his recovery, he returned it to me (sticking me with the cancellation fee) and said he had gotten a better one. It's a snazzy flip phone with color display, all kinds of capabilities he doesn't need, with a different supplier. Miraculously <G>, he can work this one with its tiny buttons. There is a possibility we are dealing with some alcohol-induced dementia on his part as well, although as yet undiagnosed. There is a 100% possibility we are dealing with a narcissistic alcoholic with ego issues. I am seeing a counselor to deal with the fallout from the situation before it affects my health any further, and I am realizing more and more this is the way he has been all his life -- it's just for the last 25 years I have been able to maintain some distance from him (it's called adulthood!) and I have changed in the meantime. Our big blowup was the first time in my life I had ever stood up to him. And he did not like it. Meanwhile other people are feeding his ego. They are not taking his "side" because he has not told anyone of the rift -- that would destroy the image of the perfect clergyman/father. Sometimes I think I fell through the Looking Glass into some soap opera -- I'm trying to reduce the drama as best I can! Songbird I think your Dad wants you to know he is a force still to be reckoned with. Bet he doesn't even realize there is such a thing as a cancellation fee. Your brother seems to know when advice is requested. He is not getting into confiding anything and listening to either side. Smart! Please drop by, call up, anything it takes. your dear Mom is in the middle. You must learn the art of letting things pass that nothing can be done about. It's difficult when one is the type that needs things done yesterday....Bless your good heart.......... It's not easy, My guess is many of us have been down this road one way or another. Florence......still learning you have to find peace in your own heart that you are going all you can do right now LJ > Thanks, Evelyn. Part of the problem with Dad is that unless it was > *his* decision, it's wrong. Case in point (which also relates to the [quoted text clipped - 31 lines] > > Songbird At this point she is still competent enough to make those on her own. I trust her doctor, as she does. My concern at this point is that the latest wreck -- which I am still trying to get details on -- may indicate something going on with HIM. I know I have to intervene soon, Dennis -- just trying to sort out how is the best way to do that. The full frontal attack blew up in my face, guerilla warfare is slow and tedious. Neither one of them would probably be judged incompetent or a candidate for guardianship. My first instinct on learning of the wreck was "I have his POA -- I'll just sell the replacement car." BUT POA is not guardianship -- he could turn around and buy another. And that really would be cutting off my nose to spite my face. (Or maybe not -- he would probably revoke my POA, give it to my brother, and I could wash my hands of the whole thing!!!) Songbird > My concern at this point is that the > latest wreck -- which I am still trying to get details on -- may > indicate something going on with HIM. I know I have to intervene soon, > Dennis -- just trying to sort out how is the best way to do that. i hope that you can get his doc as an ally - try to convince the doc that with multiple accidents now, it really is time for him to stop driving. ask the doc what i did: does he want to be driving down the road with your dad driving towards him in the other lane? if the answer's no, he should write the letter to DMV (you furnish him with a draft letter). even if the doctor is not able to directly discuss your father's case due to confidentiality, he should be able to discuss helping to stop your father from driving. in many states if the doc knows the patient is impaired the doctor can be held liable for failing to notify DMV. can't you report him to the DMV? LJ > At this point she is still competent enough to make those on her own. I > trust her doctor, as she does. My concern at this point is that the [quoted text clipped - 13 lines] > > Songbird Thankyou Songbird, Yes I know what you mean I work in agedcare with the end results of AD so I can see where you are coming from.I am over the shock and tears now. Peaceful and painfree it will be for however long we have got.I have the option of moving Mum into our local hospital which has a secure dementia area also.So i will wait until we feel the time is right to move her it is just around the corner from Dad and I, where as she is 45 mins away now,but I feel now I would like her closer so we may visit as often as we want Kind Regards Michelle > Thankyou Songbird, > Yes I know what you mean I work in agedcare with the end results of AD [quoted text clipped - 7 lines] > Kind Regards > Michelle i can see where songbird is coming from too, but for you michelle, that is a really awful thing to happen. To not be able to make an informed decision and have that done for you and her by a doc, that is v sad. best wishes christine God Bless you LJ > Thankyou Songbird, > Yes I know what you mean I work in agedcare with the end results of AD [quoted text clipped - 7 lines] > Kind Regards > Michelle > I have posted recently on lack of communication problems I have had > with the Nursing Home here in australia where my Mum Lives and my [quoted text clipped - 42 lines] > really this time. > Sorry for such a long post Death from an untreated SCC is not a gentle passing. Regardless of her mental status, your mom really needs some radiation to the area to retard the cancer's growth and to give her additional time to possibly pass from something else. Chemo probably won't help. Also - taking 2 -3 months for an excised SCC to heal is not unusual if the skin is thin or already damaged. Good luck, AW This makes sense to me -- I have no problem with treatment that will provide pain relief. But I'm wondering how you explain to an Alz pt the need to lie still, etc. for radiation. I remember someone on here dealing with having an MRI done on their LO. Maybe Michelle's mom is still at a point where she can cooperate -- I hope so, to preserve as many options as possible. Songbird I dont seem to be able to focus on this clearly at all at the moment.I think what I mean is I just dont know which way to jump. The last few days I have found myself suffering depression a condition I take meds for and have been able to keep on top of for the past couple of years.So this is frustrating me even more,I havent got the time to be feeling like this especially at this time of the year.I have lost all interest in xmas so just follow along at work and home until I can take myself off to bed which has always been my safe comfort zone when I am like this. Perhaps I should get a referral to a plastic surgeon etc.I dont think Mum would understand what was going on,Maybe she would be able to cooperate.She has had to have 2 xrays because of falls and been ok with that of late. >I dont seem to be able to focus on this clearly at all at the moment.I > think what I mean is I just dont know which way to jump. [quoted text clipped - 9 lines] > cooperate.She has had to have 2 xrays because of falls and been ok with > that of late. Hi Michelle, lots of people get blue around the holidays, and I even find myself getting that way sometimes. I just dan't seem to get going and get things done! Anyway, I hope you can get the situation with your mom squared away. I'd try to rely on good professional opinion, that way you can rest more comfortably about it for the moment, then deal with it more actively after the holidays, when you are feeling more yourself again. Does your mom have an oncologist? I'd just get on the phone with him, at first. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > I dont seem to be able to focus on this clearly at all at the moment.I > think what I mean is I just dont know which way to jump. > Perhaps I should get a referral to a plastic surgeon etc.I dont think > Mum would understand what was going on,Maybe she would be able to > cooperate.She has had to have 2 xrays because of falls and been ok with > that of late. Michelle wrote: Mum has a Squamous cell carcinoma, 9X5X5 mm The tumour is situated in severely sun damaged skin showing downward invasion of tongues strands and nests of severely pleomorphic squamous cells. Yes well now my Dr has explained the nastiness of this cancer I am even more upset and enraged that I have been fed (bullshit)Aust slang ,for 2 months now. If this info is correct, this is not a large SCC, but if it goes untreated your mom will have a very unpleasant time. Michelle, does your mom's Dr have a future plan of action? IMO, your mom's current mental status is not nearly as important as having a coherent plan of action for the coming months. Holding a person with dementia's hand during procedures works wonders. Valium or Versed also makes procedures a quick blur. While I am certainly not advocating fighting a protracted battle against advanced SCC, I wouldn't hesitate to treat such a small lesion aggressively - regardless of mental status. best, AW I will keep you in my prayers LJ > I have posted recently on lack of communication problems I have had > with the Nursing Home here in australia where my Mum Lives and my > frustration with the Home the Dr etc > Below is a copy of part of the post" Aricept." > Quote: Thankyou LJ I hope it gets easier for you once the drugs are given a chance to work . I think you are wise to cool it for a bit, If your husband is on line messing up insurance, what's next.? However, I think the legal work must be taken care of , hopefully before the diagnosis ...I've often wondered if that's the doctor's delay tactics---hoping the family uses the time wisely. If you can see or speak with an elder lawyer alone and explain your situation He/She may help you over the hurdles. They deal with these situations. Good luck... |
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