Am I the only one out here whose spouse has had dementialike symptoms for 17 years? He has been in a nursing home for 6 . The past three years he has not known any family member. Does not open his eyes, doesn't talk except for an occasional word, hasn't walked for 3 years, opens his mouth when spoon put to it. His health otherwise is excellent. The emotional drain just continues , and I keep asking "Why does this continue so long? Am I to learn something more from this?"
Oh my dear, 17 years! Mine has only been going on for 8 and I'm such a mess sometimes. I used to belive life gave us "lessons" for our spiritual betterment or something, but I don't any more. I've come to the conclusion that life is totally random, it's just the luck of the draw, and it really doesn't mean anything. I know it sounds bleak, but really it is such a relief not to always be thinking there is some reason for all this.
Oh Sandy....how awful...my husband only displayed symptoms for about 12 years and was bedridden and just like your husband for over four years before he died this spring. I felt like you...I was thinking he would outlive me....I am so sorry you and your family are dealing with this.
I think the only think I learned from all of it was that I am a lot tougher than I thought I was and that I can do anything now. Beenthere, I think your theory of random is a good one...who would want to think there was a reason for this....
I am so sorry for you who have them in that condition so long. nobody in thier normal minds would want to live this way or have their LO attending to them for eternity it seems. if they are healthy other than the disease i guess it takes time for this disease to compromise all the systems of the body and shut down finally. my, its a sobering thought. i am almost certain i wouldnt do the prostate lazer surgery now and just keep DH on various antibiotics as long as possible then go from there - he is on longterm low dose of antiobiotics for life now..he suffers cronic uti..i cant imagine seeing them in this end state like this, you both, have my deepest respect. divvi
When my FIL has AD, he also had prostate cancer. My DH at that time did not want any treatment for it. He told the doctors to keep him comfortable but no heroic measures were to be taken. I sort of gather from that, that if he should get prostate cancer or anything like that he would just want to be kept comfortable and no treatments. This is really hard stuff, isn't it. But, ya know what? I think Sandy hit the nail on the head. We are a whole lot tougher than we think we are.
divvi, not being a clinical person at all, it is hard for me to even know what I would do, but sometimes I wonder if long term antibotics for UTI would even be something I would consider in the stage that we are now in. Of course I know NOTHING whatsoever about medical things so it might be something that has to be. I am really green when it comes to the Medical part.
I know one thing for sure, I will not treat anything the Doctor tells me that I don't have to because I do not want my dear sweet husband to end up like sandy or sandi has had happen to theirs. Please don't let that happen to us. I would say that to keep on treating things especially in stage 7 would just be allowing that to happen.
Jane, honestly at this point, i will continue to treat him as long as hes walking talking and eating toileting etc. he is in pretty good shape other than the urinary issues. so being on the low dose is good for now, i feel reluctant to say this, but i think it may be our 'out' at some point though if he becomes bedridden without the daily dose of antiobiotic it would be notime flat he would have a uti, if untreated would go to renal issues. not a nice thought, but i would rather when the time comes to not treat it be this way rather than what i read with both Sandy/Sandi. this is what i mean when i say we have other issues that may come into play at some point. i will treat him til the hospice dr would say differently lik you said..thanks jane for your candor, i know exactly what you mean. divvi
In my original comments above I did not indicate that my spouse is 77. Having said that I would not under any circumstances let him be given antibiotics. I am a retired nurse and I have seen too many lives prolonged under the guise of "caring". Yes we love them but sometimes it is best to think of their needs and not our own loss and just let nature take its course. We have already "lost" them. It is what I would hope my own family will do for me should the need arise. He can have comfort measures ie oxygen, but when the time comes he will not be force fed nor will he have a feeding tube. I hope I have not offended anyone by these comments but I feel very strongly about this and so does my family. Since I just found this site I feel I have discovered a whole new sisterhood and brotherhood and I can relate to almost all of the past comments on most subjects. Peace to all of you.
Sandy, I agree with you....when there is no quality of life, why would anyone want to prolong it? My husband was only 61 at the time of his death but it was not a hard decision to not treat his pneumonia with antibiotics. He was never in distress and never needed oxygen...it just seemed like he quit eating, his breathing became more and more shallow and then he was gone. It was a fitting and peaceful end to a life that had been ravaged and beaten up by a heartless disease that stole his very essence.
sandy, welcome to the club. When the time comes there will be no feeding tubes, no antibiotics or intravenous feedings unless the hospice doctor can tell me a good reason why, etc.
When newbies ask why, we send them to the Hard Choices book on the web and they come back understanding why and why not.
So no, I doubt if anyone here who has been here for an amount of time is offended. Most of us have learned enough, even if our LO is not ready for any of these decisions to understand why you have made the choices you have made.
And my family is with me on this just as yours is.
Sandi-welcome from one nurse to another. Hospice has twice treated my husband's lung congestion (they never called it pneumonia) with levoquin. They made me feel guilty for even considering not doing so.
My husband has had Alzheimers in a dependent state of living for ten years. He has been in a nursing home for five years due to my inability to care for him at home due to having Parkinsons disease. He now does not walk except for physical therapy (cannot stand alone), speech has been unintelligible for years, does not know us sometimes, does not feed himself but can still eat normal food. He is in excellent health except for the Alzheimers and that is why I think he will live for a long while. I hate that he has such a poor quality of life, I wonder and am afraid I will die before him. I want to stay alive not for selfish reasons but I don't want to leave him to being alone without me advocating for him. He has a living will so I know his wishes and will not have a feeding tube when there is no hope of recovery , I will allow God to take him when it is t ime. It has been a long, long, journey and I am exhausted and my grieving will continue until my sweetheart is released from this prison of Alzheimers. The human heart apparently can take more than we ever imagined.
Care-wife, my heart is heavy & in total agreement with you as I read your post. We've only dealt with this for 4 years since diagnosis and are not near the incapacity your DH is in, but I can 'see' it coming, and agree completely. My husb is in excellent health too, except for the Alz...praying for mercy, knowing too that God will take him when He is ready.
I might add i agree with all of you about prolonging things when they get that far advanced and are in that end stage. i think my DH is midlate 6stage so he's still pretty active and mobile. we have never used hospice yet so the antibiotic use issue will more than likely come into discussion when /if hospice is called in at some point. divvi
Bluedaze- I cannot understand any hospice making you feel guilty for not wanting antibiotics to be given! My spouse is in a veterans home , is receiving excellent care, and the nurses are so compassionate and empathetic. I have to drive 130 miles one way to see him and because of the gas prices so high I have now limited my visits to every other month. I know that if he has so much as a cough they will call me and even though it is on his chart that he is not to have antibiotics, whoever calls will reconfirm that and everyone of them has said that they understand our decision. At a care conference several months ago the charge nurse even said to me without preface" Sandy, if you feel that you cannot make the trip every month, don't feel as though any of us are making judgments because you are not here every few weeks." You can't know how much better that made me feel. Because , while I was not visiting him to show others how much I care, the thought had crossed my mind that someone might think-boy she doesn't care very much as she seldom come!Everytime I go I take flowers-for him who doesn't see them but for the lovely caring people who do.
Sandy-I can understand your feelings about time between visits. My husband does not know that I am someone who cares about him. Sometimes I can't wake him enough to even open his eyes. It makes no difference to him if I am there or not. The aides sometimes question why I only stay a short while. The reason I go so often is to check on his care and make sure every one knows I am watching.
My adopted brother was in a nursing home just 5 minutes from our home. I popped in at ALL times of the day and night. They took excellent care of him and would call me if his hand hit the wall and caused a mark. They were angels going above and beyond the call of duty. He never had one bed sore even though it was more than nine months of absolutely no movement at all. He was turned and turned every day all day long. The reason I went was to make sure that everyone knew I cared about him and was watching his care. If at any time the need should arise I would place my husband there in a moment. Thinking respite care. A tiny break for me. Sally
I absolutely cringe when I hear that someone has lived with AD 14-20 years! My husband has been sick for 8 1/2 years (possibly had it as long as 10 years). I loved him dearly, but I am so very very tired of grieving, so very very tired of watching that once vibrant man be reduced to a shell. My family and I are fully ready for this to be over with. There is nothing left but the body of this man we have all loved. Totally dependant on other's care, can barely walk, cannot talk, read, or write and is barely eating. There is very little recognition of us from him. We've had him put on comfort care and has been off his meds for 2 1/2 months. I'm to the point that I pray every day that God will release him from this world. I think it is the last thing I can do to show my love for him. He wouldn't want to be this way - none of us would!
You are not alone Judi. I'm hoping that when my husband reaches that stage that I can let him go gently and make the same decisions you are making. I went out and read enough to know what those decisions will need to be. And his family doctor and I have talked.
It is possible that his pacemaker will go early, but because he got one of the first of the then brand new digital models, there literally is no way to know how long it will last. His doctor tried to find out, and was told no one knew. I tried research on the internet, and got the same answer.
My husband last year (Nov. 07) had a growth that appeared from nowhere, very prominently on his right hand. It grew very fast, and looked very much like a melanoma. We went to the doc who would not even biopsy it because it looked risky. Doc doubted melanoma, but felt 90% sure it was a less invasive cancer. Well, waiting the month for appt with the dermatologist to remove and test it DH kept bumping it (forgetting it was there), and one day it just fell off. Some bleeding, not much. The derms office said no point in rescheduling appt unless it grew back. Hmmm! Well, here we are 13 months later and I saw an almost identical new growth on his low belly last week. Lo and behold, it has fallen off too. Only this time I wasn't freaking out, running out and getting biopsies, and being all worried. He's had skin cancer before.....in '96. It was a basal and squamous cell, two less serious types. But I seriously said to myself after the last *scare,* "would I put him through chemo? Would it make sense for us to go through that?" And I concluded that nothing more than paliative care would make sense in this situation.
I agree New Realm...my husband has been in a last stage for a couple of years now and I don't plan on him having any serious medical procedures unless it is something curable and will make him more comfortable. he cannot talk now and is in a wheelchair. Our men are having to live a precarious life as it is and I don't see having my husband go through painful procedures that ultimately only prolong and willl end in him dying from the ALzheimer's bit by bit.
We did my husband's in-person pacemaker check today. His family doctor had not been able to discover what the life-expectancy of his pacemaker (or pacemaker battery) was. I asked the RN who does the pacemaker checks. She said probably 7 years over all, for this model, but that the machine that creates the reports sometimes gives an estimate of the remaining battery life. It did.
Her estimate was 2 more years. The machine said 4 more years. It is a relief, because when the time comes to replace it, he will be so far along that no one will expect me to allow the surgery.