My husband Jim has had pneumonia twice during the last year. The last time we were in the Doctor's office for the yearly physical the Doctor mentioned that there would be a time we would need to decide how agressive we should be in the treatment of certain illnesses pneumonia being one of them. I did not really realize it at the time but I guess he was trying to prepare me. How in the world would a person know when and at what depth of the stages you would no longer treat pneumonia with antibotics?
Jane, If I could read the Dr.'s mind, it sounds to me like he is giving you options on how far you want to go in saving you LO's life only to bring them back to AZ. Many would say "there are worst things than death, and AZ is one of them." We will all have to make some difficult decisions on this journey and each of us must decide the limit that we want our LO to endure. I pray each day for a peacfull death for my wife, hopefully from something other that AZ. DickS
At one time or another, many families have to face these decisions. It is a matter of "quality of life". I would think that at the end stage, when there truly is no life, that is when the decision needs to be made. Everyone has differing beliefs in this matter - I believe you will know when it is time for you to make that decision for your husband.
Hi Jane We are lucky, back when JR was still JR we talked about quality of life and what we would want if it were us in the hosp or ill. So I know what he would say given the option. Makes it a bit easier for me when asked those guestions. Think back to when Jim was healthy and someone you knew was ill or on lifesupport, how did he feel about it. What would he have done? I don't know if this will help or not but hang in there. Kathy
Kathy, Jim does have the health care poa and the living will. It is just that I find it hard to know what really is the advanced stage as far as the pneumonia treatment. Do they need to be bedridden, or what stage? I do know that right now Jim has no life, he sits all day, sleeps, and is so confused I have to guide him to the bathroom. In fact he cannot find his way from one room to another in the house. We have lived this way so long it just seems normal to me but then I am sure we are more advanced than I realize. As you say you and JR talked about quality of life and so did we. The problem is how do you know about the quality of life of another person with the Alzheimer? Our Doctor says he is in the Severe stage.
oh Jane, it sounds like JIm and JR are in a simalar stage, I also hear what you say about "normal" We are so used to our routine that is just is the new normal for us. take care kathy
If Bill had pneumonia, I would have them treat it with everything they could. He is entering stage seve quickly, but being selfish, I'm not ready to let him go. If he should should get to the point where treatment couldn't help, then it would be God's decision, not mine. I'm pretty sure of my decision, because last night when I visited him, he was congested and pneumonia was the first thing that popped into my head. I knew then that I would have it treated.
I think when all is said and done, as long as you are content and happy the choice is yours and all that really matters is that you are "ok" with your decisions. We all walk a simalar path, but as we know AD is different for everyone . I hope Bill feels better soon.
I have been thinking about you a lot these last few days. How is Bill doing, aside from the congestion? Were they able to stabilize his agitation? How are you doing?
No joang they haven't stabilized anything, just drugging him to keep him calm. Monday night he was knocked out until 15 minutes before visiting time was over. I only get to see him two hours a day. The last two nights he has been in a deep fog, that's what I call it. He doesn't know his name and is having trouble following directions like sit down or swallow the water. I have trouble getting him to open his mouth for me to take his teeth out to clean. The doctor has switched him to risperdal and has orders for ativan and haldol as needed. I am finding it strange that haldol is needed at three oclock each day. They gave him the ativan when he went into another patient's room while she was in there and wouldn't let anyone in. It took four people to get him out to give him a shot to calm him. I spoke to the social worker today and she said his chart stated he was calm but confused today. He slept five hours last night so that was an improvement. I thought he would be home the 24th but I'm not sure now. But you never know they could discharge him tomorrow. I have a court hearing the 26 for petition for hospitalization. In Mi. a DPOA or patient advocate does not let me commit him to a psyc. unit unless he agrees, so unless the attorney that talks to him decides he is capable of making the decision to stay in the hospital, I will have to go to court and convince the judge that is where he belongs.
I don't understand the laws. If he were on the medical floor, I could tell them to cut off a leg or let him die, but I can't commit him to a psych unit. The decision is his. He doesn't know his name, where he is, how to dress, sit, stand or walk without assistance, but he gets to decide whether he stays or not. Can you explain that law?
I am so sorry you are going through this. All I can give is support and understanding - and I am giving you a HUGE dose of it.
However, I CAN explain the law you are talking about. I had to learn all about it when I was working in Special Education. It goes back to a time when families had their LO's committed to mental insitutions for all kinds of selfish reasons. People were warehoused in psych. wards for years and years and years, when they were mildly retarded, autistic, depressed, rebellious - all sorts of reasons. When the lid was finally blown off of that scandal, legislators rushed to make amends by swinging the pendulum completely toward the patients' rights. And that is how we ended up with the mess you are in.
Joyce 43, I read your comments and I totally agree. If that time comes for us, I will leave it up to the Doctor, I will let the Doctor make the call because he would be the only one who could know how serious the pneumonia would be or how bad the terminal Alzheimer was becoming.
I did read on the Alzheimer site that by the time the patient reaches the Advanced stage of the disease that is was their recomendation that treating bacterial pneumonia was considered extreme and only causing the patient more suffering. I think that is all in God's hands, I do not think treating pneumonia should be called extreme measures. Somehow with Alzheimer the article advises not to treat when the disease is severe and advanced.
This is really old, but 25 years ago when my mother died, and not from dementia, my sister and I decided not to treat her pneumonia. All of the systems in her body were breaking down. She had had two strokes, which is what put her into the hospital, 4 bouts of congestive heart failure, and her colon cancer was back.
So not treating pneumonia is not a new idea. And at some point all of us are going to have to think about this decision and make it. It is probably a good idea to think about it now.
Well, I started this discussion back in December of 07, we have again been to our Doctor and this time he came out and told me that we were at a stage he recommends comfort treatment only. I asked what he meant and he said it comes down to quality of life, the Doctor told me that if he himself where at the stage my Jim is in he would not want to be treated and kept here. He is recommending no more treatment except for comfort. I will follow his advise because as I read the articles that are posted, and when I read the condition Joyce43 husband was in back in December when she posted, I myself would want to be let go, no one in their right mind would want to continue a life like that only to become worse and worse. My husband is gone and has been gone for quite a long time now, I do not want to bring him back to only decline more and more. It is in God's hand and is God's call but if it happens I will be ready.
With my mother 25 years ago, we decided to let God take her gently and quietly in her sleep. She hadn't woken up from the coma she was in because of the stroke, but if she had there would have been a lot of pain and very little they could have done about it at that time. Hospice was around, but just barely back then.
When the time comes for my husband, I've got a living will he signed when he was still competent to make a decision that REQUIRES me to make a similar decision. The new PA law has a section that allows the attorney to put in a requirement clause, and ours did.
Gene had developed a cold, I am not sure if it had become pneumonia, but I had decided on comfort measures only. He died peacefully 5-6 days after the cough started. I had read so much for several years before that I accepted it. I am at peace with this dicission.
I am in Texas now with my sisters. They are screaming and yelling at the KU/Texas AM basketball game. I will fly to Kansas tomorrow.
My husband (age 61) died during the night last night and we, too, only provided comfort measures for him for the last few weeks. His passing has been a blessing....eleven years with AD and the last 4 years in bed in a fetal position.
Somethings in life are worse than death, and I believe Alzheimer's Disease is one of them.
Sandi, I have thought of you often in the past few weeks and although I am sorry for your loss, I am equally happy that you are free and you poor husband has found peace at last. I hope you will continue to vist this site.......your courage has been an inspiration to all of us. DickS
I have been thinking of you often since you told us of the pneumonia. Your dear husband was lost to you years ago. My wish for you now that his suffering has ended, is that you can take care of yourself and begin to live.
Your wisdom and experience has been a help to all of us here. I thank you for that. After you have had some time to so what needs to be done for your emotional and physical health, I hope you will continue to check in with us.
Because I want you to be able to receive the best wishes of all of our readers, I am moving this to a new discussion, labeled - "condolences to Sandi".
I think these kind of decisions don't only appy to pneumonia. The decisions can be made for other aspects of this disease. My wife is in stage 6/7 and drifting more into 7 as each day, week progresses.
Just recently, she had an appointment for her female doctor which I opted to cancel. I mean, let's face it, these doctors are looking for signs of cervical cancer, and/or possible breast cancer. So...I ask myself, what if they do find something? Am I going to subject her to the possible surgery or chemotherapy? I don't think she should be subjected to these things in her current stage. I mean, I have the choice to make for what I feel is in her best interest, to let her die from complications of AD, or cancer.
Sad that we have to make such decisions for someone else. We both have advance directives.
I have been setting up a trust, with an Advanced Healthcare Directive. I found a booklet, which is free on the internet, that I found very helpful in deciding what I would want done ... I wish I had found it when my first husband was dying of cancer.
Watchman, Ditto to that! A year ago my wife had a procedure in which she had to lay on her back with her arms raised as far back as possible, while pictures of her heart were taken. She had to stay in this position for close to an hour and was in great pain. It took six months before the pain was fully gone when she raised her arms. I was right at her side and I vowed that I would never have her go through anything like that again. Like you, I cancelled her GYN appointment and I told my Doctor that I (we) would not take aggressive measures to prolong her life. I also have all the medical paperwork in order. DickS
I'm with you guys.Last year my husband had a MRI and he was so upset from having to lay perfectly still that it took him days to get over it on top of the tech not being very patient with him. I told the neurogist no more thats it. Some times we have to make hard decisions for what's best. GOD BLESS
My wife recently had a gastric emptying study (I decided to go ahead with it since it was to look for intestinal problems which are bothering her). She had to lie on a bed for 1 hour without moving. The technician told me to wait outside in the waiting room. I gave him the card I have which states that she has Alzheimer's. He then asked me to come back in the room. By staying at her side and holding her hand during the procedure we got a good study with no problems (but no answer as to her symptoms). If the technician is not being patient (as with nelliejane) I would stop the procedure unless the answer was vital for her/his comfort.
My feelings exactly about not putting our loved ones through unnecessary procedures. My DH had a MRI and also a Brain Scan done in 2003, the year he was DX with Alz. Then in 2004 he had a Colonscopy done. Other than the normal doctor appts., we never had any more procedures done. He is now in a NH, so, once a month the doctor comes by and gives him a check up, etc. Other than drugs for his comfort, I will not put him through any life saving procedures. We both have Directives and he does not want this anyway. All our medical paperwork is in order with the NH and doctors. Yes, I do agree that these are tough choices to have to think about. But, the last Stages of Alz. are very tough also. Again, we are all doing the best we can under the circumstances.
So far my wonderful husband is doing pretty well. Still smiling and enjoying being with everyone, so, I guess that is all we can hope for right now. I just try to enjoy him everyday and tell him how much I love him. He is in Stage 6 going into Stage 7.
Watchman, Yes these type of decisions DO apply to pneumonia at certain stages of the disease. The Alzheimer Association has directed that in their opinion treatment of bacterial pneumonia in the last stages of the disease are considered extreme life saving measures.
You have to wait until you are in this last stage of the disease to make that judgement.
One of the things I found surprising in Hard Choices for Loving People was the discussion on the use of antibiotics. I mean, who but people faced with AD would even question whether to trying to cure pneumonia constituted an "extreme measure"? But that is precisely what many caregivers of AD patients have to face. AD patients are particularly prone to getting pneumonia, because they usually develop difficulty swallowing in the later stages of the disease.
The booklet says, "Dying from pneumonia can be very peaceful. It used to be called 'the old man's friend' because of how gently it took someone who had long been disabled by disease."
It is, by the way, written by a chaplain, who has worked in nursing homes and for hospice for many years.
Today we went out and bought a very comfortable (though ugly) recliner/rocker for my husband. He has three cancers as well as AD. Two years ago, when the doctors and I realized his AD was advancing more rapidly than the cancers (two which are incurable anyway) we opted for only comfort care. But you keep on trying to make them comfortable. We should have bought the chair earlier as he supposedly has only a few months to live. For two years he hasn't had any doctors' appointments--not for his eyes, not for his urology problems, not for viruses, not for anything except to see how the diseases are progressing. I just doesn't make sense. But I'd do anything to make him more comfortable as he takes this journey. I think his AD is masking his pain and the doctors have agreed. My husband can hardly walk yet says he's in no pain. For that and only that I'm glad he has AD because others with his type of bone cancer (multiple myeloma) say it is very painful.
Bebe - I answered your question in another blog - but I now see your husband has multiple myeloma, from which my spouse deceased. As I said in the other blog - my spouse did not have the pain associated with that cancer. I feel for you having to deal with so much with one husband, though at this point I think dying of multiple myeloma is better than dying from AD... Thinking of you...
I replied under the other subject list. You, too, have gone through a lot. Did your husband with MM also have AD? And I agree, dying of MM is better than dying of AD, in my opinion. That's why we stopped all MM treatment two years ago.
Bebe - My spouse with MM died in 1996. I met my AD husband in a Hospice Grief group, since we both used Hospice when our spouses died. We married in 1997 and enjoyed a few wonderful years before AD was diagnosed in 2003. When my spouse with MM was diagnosed there was little to be done and he lived 32 months from diagnosis to death. I, like you, expected a lot of pain, but it wasn't true with him. But, by the time he died, I felt of death as a relief. Love to you...
It's just so hard...how do you keep from confusing "I did comfort only" with "I let her die." It hurts so much to think I am letting her die. I tell myself it's giving her peace, and what she wanted, and all that. And then the little voice inside starts up with "She's going to die unless you do something; it will be your fault." I don't want this power or this decision!
Trisinger.......This must be a very difficult time ,,, I can only imagine what difficulty I and all the others have yet to face... I wish I knew the words to help you at this time ... Please find comfort in some of your own words " it gives her peace,and what she wanted " Bless you and please may God help you find comfort in the fact you HAVE been there for her..... This all is so damn sad,, we all must be wearing angel wings............
Trisinger...know your conflict. Went throught this with a sister who died with breast cancer. Now that my husband has AD know that we need to make same kinds of decisions. It is not easy. Intellectually you know it is right, but emotionally it is very difficult.
If you intervened what end would that serve? Prolong her suffering? Make you feel better? You have been a wonderful caregiver and daughter....now try to feel comfortable with your correct decision for a comfortable death with dignity. You are also following her wish. Feel all our hugs!
I still consider myself new to this site and I read posts much more than I post. My husband is not as severe as many and so part of me reads to learn what I may face. The amount of wisdom that is found here helps me get through many days. Even though he is not yet at the severe stage I have thought alot about that time. My husband was always a sort of no nonsense guy.. never wanted a fuss .. In many ways the topic of aging and illness came up and he always joked...." just shoot me". He made his views clear in so many ways. He hated the thought of nursing homes and even hospitals. But since AD came into our lives 4-5 years ago his personality has undergone such changes. He looks to me to take care of him. I so hope I can keep him home because I know he so deeply fears the thought of being in a NH. Anyway I really, just wanted to say that reading your posts help. WE never really know what the future will bring. He is physically very healthy.. no other illness... and I dread the thought that he may suffer years and years of AD. I keep in my mind who he used to be and I hope this will guide me in all my future decisions.I am so glad that we talked over these things before he became ill. I do know that this site has become my best friend.I come here daily and read and feel that I am getting to know all of you.
It is hard to let someone go, even though we know we all die. I have had the privilege of being with several people as they died, though we were using Hospice and that staff is exceedingly helpful. My previous spouse died on Thanksgiving and wanted me to find oxygen for him. I tried for a bit, but knew the end was near and decided against it, since he was not gasping for air and was very comfortable. After he died I was so grateful I didn't do that, because his cancer caused him to bleed internally and, frankly, if he had lived much longer he would have been vomiting blood. As it was, he slowly lost consciousness and it was very peaceful. I had read enough to know to have the room quiet, play comforting music, have a candle burning, and just sit there to be with him and hold his hand or have friends give me a spell. After he died I didn't immediately call the Memorial Society to pick up his body - which also felt right. Loving thoughts to Trisinger
frand,should I ever be faced with those decisions I hope I will be able to respond as well. I have been with other family members when they have passed away but always in the hospital. I have alway been just an observer... I hope I can show your strength
Trisinger, I know so very well what you are going through. My first husband died of pancreatic cancer with metastases in the liver. When it got really horrible, I stopped trying to get him to eat, and refused to let them insert a feeding tube. He participated in the choice to refuse the feeding tube, but I was never sure he understood the ramifications. Finally, the pain was bad enough that the doctor agreed to morphine at levels high enough to keep him unconscious.
This was back in the days when there were several lawsuits against caregivers who "allowed" their loved ones to die, charging them with murder, and sometimes also charging the doctors and hospitals involved. So the hospital faithfully brought a tray to my husband's room three times a day, and each time, I waited until no one was around and dumped it in the toilet.
Every now and then, I'd get totally panicky -- what am I DOING? he could starve to death! he could DIE!
I'm not sure I was totally rational all the time. It was hell. I was afraid to talk to anyone ... and the doctor wasn't about to talk to me, once he'd explained the choices to us. He didn't want to know what I was doing.
I am not sorry about the choices I made. I owed it to my beloved husband to minimize his suffering as much as possible. I would do it again if I had to.
You are NOT letting her die. She is going to die, and there is nothing you can do to stop that. You do NOT have power over that. What you do have power over, and what you are doing, is loving her and helping her die with dignity and as comfortably as possible.
If you haven't read Hard Choices for Loving People, I would encourage you to do so. I wish it had been available when my first husband was dying. I'm glad it's there for me now.
I had an uncle and Aunt with AD for the last 5yrs. two different sides of family trees- but both husband and wife had it and she also had parkinsons first. strange, she passed 10days ago and today he passed with pneumonia, the AD mans friend. isnt it funny that they told him his wife had died and if he wanted to attend the funeral -which his family all said he had 'no clue' so he didnt attend. well 10days later he passed as well. sometimes it makes you wonder if even within the last stages of AD they seem to 'know' more than we give credit for..i think he was ready to 'go home' after hearing of his wifes passing. and yes the kids are already preparing battle for the wills... ugly, ugly--lots of oil wells involved... divvi
divvi, I'm surprised that they didn't try for guardianship and control of those wells after the AD got bad. Wouldn't Dad's will be the one, since he lived 10 days longer? It is a shame it will get ugly.
I'm sorry for your loss of your aunt and uncle.
For all you go through, you have a wonderful attitude about everything! Some day I want to meet you in person!
Mary, thanks- yeah DPOA was involved with uncles illness and passing but now one kid is executor as well and things get dicey as wifes estate needs probate first since she died earlier- then uncles-what a holy mess! the kids werent talking before they died so you can just guess the mess that entails..my mom the gossiper keeps me updated. ha.
what a n ice compliment Mary, would love to meet you and everyone here too! divvi
My husband has had AD for 8 1/2 years and last year, I finally put him in a care home. About two months ago, I opted to have him on comfort care. A very hard decision to make, but I did it for two reasons. First, his poa was very clear - nothing heroric, nothing to prolong his life, when he really couldn't be cured. The second reason was his quality of life - there just is none. He has also had strokes, so he can't talk either. As I said, it was a very hard decision to make, but I know he wouldn't want to live this way - his mother also had AD and I remember him telling me, he hoped he would never be that way. And here he is. I just feel this is the most humane thing I can do for this man I love so much.
Judi, I am so very sorry you find yourself in this situation. I hope when the time comes I will be as strong as you are. I know none of us feel very strong at times, but to survive as we are, it takes great strength indeed. I know this is what Lynn would want as well. When his quality of life is nil to none like your dear husband, I will do the same thing. God help us all. My heart goes out to you, it must be so very difficult. Heartbreaking Again, so sorry. Let us know how we can help you through this. ((hugs)) ~Nikki
My LO has been in a special Hospital for a week to regulate his medications. he is an hour away .they called at 3:00 this morning and told me they were taking him to the ER for the third time in 2weeks . He now has pneumonia again for the third time in6weeks I don't think his little body can take much more. I am waiting on my daughter to take right now I know the time is getting close I don't know if I can let him go yet ,SELFISH on my part. I want to be able to hold him again and I have not been able to this last week . I could only visit about an hour I will let you know pray for us.....