Two weeks ago, I decided to go for a meeting at the nursing home where Gord went for his respite care. The director of care was almost fawning while the nurse manager had an obvious chip on her shoulder. The administrator and the Gord's day RN were also there. We had a good talk and I requested all the notes in Gord's file. I asked about Gord's ativan. I told them that a doctor in emergency had stated that the sudden stoppage of ativan could have been one of the causes for what they figured was a delerium. The nurse manager immediately jumped and asked if the blister packs had been opened and taped. I assured who that they had not been opened and there was no ativan in them. Again she asked if I was saying that the blister packs had been opened and taped shut. Again I told her that they were intact. The director said that the doctor was not available but he would speak to him and get back to me. When he did, he said that the doctor had stated that he never would have given Gord the ativan in the first place. I argued that that was not his right. I was told that I could call the doctor. I did. The doctor basically blamed the nursing staff, saying that he okayed whatever they conveyed to him as the drugs and whether they were standing order or PRN. I assured him that they were standing order. I spoke to the director again to tell him that the doctor was blaming the nursing staff. Again, he said he would get back to me.
I phoned him this morning. He said that he had talked to the nursing staff again. Apparently an on-call doctor had decided to take it upon himself to stop the ativan. He changed it to a PRN. I asked the director by what right could this doctor change the orders of another doctor. Gord was there for twelve days and he countermanded the orders of a psychogeriatrician who would have far more training than a GP. He also didn't bother to call me nor did he care to find out how long Gord had been on ativan. I am so angry. This didn't kill Gord but it certainly helped him in his decline. I will not let this go. This is a practise that is very wrong.
Jang, in my cynical experience, everyone tries to pass the buck. I think that if you really want to pursue this, your course would be to write a letter of complaint about this on-call doctor ( and name him)to the Ontario Medical Association. They will do a thorough follow-up which will take months, and you will spend hours filling out forms etc. Meantime, the on -call doctor will have a lawyer and probably come up with something to cover himself. If you want to go higher, you likely have an ombudsman in Ontario; your health minister for the Province will know (and I found B.C.'s health minister to be responsive). Or your local MP (it happened that my local M.P. was a recent Health Minister). The upshot may be that you'll get an apology but no admission that anyone was at fault. But at least you have it on record in case other complaints come in, and there will be a pattern established. So then everyone will be more careful. You might want to consider the amount of time and energy you are going to expend and whether it is worth it at this time. You are still recovering from a long stint of caregiving and are in grief over your husband's recent death - I believe that our own health is at high risk for a year after this marathon run we've done. To sum up, my advice is to conserve your energy and do what's easiest for you.
Thanks Mary. I already told George that I am writing a letter to the ministry. I found the doctor's name and am thinking of sending a letter to The College of Physicians and Surgeons. You are right. It will take a lot of energy.
jang*, i am not a dr but i do know that the ativan is a class of drugs called benzodiazipenes. they are very potent meds and act as tranquilizers. also they should be weaned down after long term use to avoid severe and some very nasty side effects. i have heard they usually will wean from this drug with a use of valium which can be lowered doses over periods of time but that would depend on the prescribing dr and how to go about it. if you read up on the benzo family you will see they can be very nasty to come off of without the proper tapering and can even cause serious or life threatening side effects if not done properly. i dont know but if it were me and a new dr stopped cold turkey after a year of use, i 'd be asking some very serious questions. like i say i am not a doctor of course but would question the abrupt stoppage from this dr just fo rmy own peice of mind.
I feel I must put in my 2 cents worth, and I'm not saying it to upset you, honestly.
He is gone. He is in a better place. If he hadn't had a disease that was deadly in itself, I would go after them too. It could be that he might have had an "event" as several of our spice did that led to his speedy loss. You really can never know.
That being said, it is time for you, me and the other caregivers who have lost our spice, to go forward and not backward. We need to put ourselves back together and not think about the "what ifs". We need to think about the family members who are alive, and think about ourselves, and try to find out who we are. I am still waiting for the "good" memories from before AD to return and to stop seeing my husband the way he was the last two weeks of his life.
I am planning on having a good Christmas with my children this year, the first without my husband. He loved the holidays and would want us to remember him having fun and enjoying having the kids home. Yes, I have tears in my eyes as I am typing this, and my emotions are still on a roller coaster after 6 months. But I'm alive and I can't change the past. Only my future. I'm sure your spice would want you to do so as well.
Thank you Divvi and Mary. Mary, I know you are right. It is just over 6 weeks for me and I am on a roller coaster too. I do know though what Divvi means. It upsets me greatly that some weasely little doctor can just come in and change a drug regimen without consulting anybody. He has undoubtedly done it before and will do it again. I have to complain to the body that governs physicians and also to our ministry which governs nursing homes. I have long wanted to be an advocate for those with no voice and this is something I have to do. I will not go beyond those 2 letters. Here is a question. My son wants me to go to his place for Christmas Eve. He moved in with a girlfriend in May and she is a lovely young woman. It is their first Christmas living together. Also, do I want to be with other people or do I just want to forget it is Christmas Eve and go to bed with the cat. I will definitely go for Christmas Day. All opinions welcomed.
Jan, if it is just for the evening, and come home and go to bed and return for Christmas Day, I say go!!! He invited you, and I'm sure with her blessing. This first Christmas for us is hard, and I'm sure he wants to be with you - maybe needs to. I don't have any idea how far away they live.....
No, Mary, it is to sleep over Christmas Eve and be there for presents Christmas morning and for the day. When I was a kid, we went to my sister's house always for Christmas. She is 20 years older than I. I have vivid memories of how hard those Christmas's were for a kid. Her children had probably 20 presents to every one of mine. I remember opening presents as slowly as I could so that I would not be sitting there watching them. Painful memories die hard and the thought of spending Christmas morning, even though it is my son, is somewhat scary.
Jang* - use your best judgment. Only you know best. If you are remembering sad times on Christmas morning perhaps you would be better waiting until Christmas morning to go. I have been a widow 2 years now and the 2 Christmases before this one - we pretty much celebrated our usual way with my daughter's and spouses coming to my house on Christmas Eve for a special dinner and Christmas morning I went to their house. But they lived close and I spent the night at home. This year will be the same. I have not visited overnight much with my children because my 2 daughter's have always lived next door or a short distance away and I have never stayed at their homes overnight. My son lives 3 hours away and I have only spent 1 night with he and his family. I prefer to stay at a nearby Motel so I won't upset their routine. Some times daughter's in law's feel uncomfortable.
I try and keep things pretty much the way we have always done during the holiday's. I mourned my dh for 13 years before he passed with Parkenism/Alz. and VD. Soon after he passed - my mourning stopped. I have always been thankful he did not have to linger like so many do. Life is for the "living" and I still have my own life to live and 3 chidren and several grandchildren. I do not want them to live in mourning either. Dwelling on "what might have been" or what "should have been" can only draw you down. We have to "play the cards we are dealt" and attempt to make both our own lives and our loved ones lives happy. There are so many people suffering - not just from Alz. and Dementia but many other afflictions and diseases. Everyone carries a burden.
I think all of us experience the "loneliness" and difficulty of "fitting in" with married couples or those in a "relationship". We feel like something like we did when we were children and our friends ignore us.
Whatever you and anyone else decide to do for Christmas - try and put on a "happy face" and enjoy being with friends or loved ones. You never know how many Christmases you will have left to celebrate. Life comes with no guarantees.
lmohr* you are so right. I am pleased that my sister told me the other day that she thinks I have handled this so well. Apparently, I have not whined or made others sad with my presence and for that I am grateful. I want my son and his girlfriend to have a happy Christmas Day. I will have to think about it. I think she is OK with my going there as the day Gord died, she asked me to go to spend the night at their place without even asking Jeffrey. Choices can be hard to make. I wish I could drive but I was a lousy driver when I quite 39 years ago and the traffic is horrendous now.
Jan - can you leave the invitation open? Explain to them you are not sure and you will let them know Christmas eve morning? If you are not sure - pass. I have passed many events in my life due to depression or circumstances. Yes, at times I regretted but it was not a life ending event. Whichever way you decide, make peace with the decision to enjoy yourself -whether at home alone or your son's.
I like Charlotte's advice. I have a friend who saw her mother though ALZ and her father through complications from diabetes and after they died, and because of lousy family relations with a brother and sil...she keeps to herself on Christmas Day..she snuggles in with her dogs and reads her Christmas mail and makes for herself a really peaceful day..This works for her. I don't know that this plan would work for me..
There have been a few times when I have turned down invitations for us to do something if things just don't feel right. I think this is good advice. We go through a lot and certain events just bring us back to to painful places..sometimes it takes us back to the " good ol days" which for us are now only memories but seeing others enjoy this in the present leaves us with a hollow feeling...
I think I would do what Charlotte suggests....even if Christmas morning you " don't feel well"...