This morning it took me an hour to get my husband awake. He is in stage 5-6 with Parkenism. I would shake him and he just wouldn't wake. Finally took his BP and other vitals and they were fine. He has been having fluid in his feet the last couple of days and I had started him on fluid pills and cut the salt. I was just ready to call a caregiver friend and my daughter when he finally woke up. He sleeps most of the time, is apathetic, disinterested in things he was always interested in etc.
lmohr - If you can look on line for "Gone from My Sight" it talks about what to expect in the last up to three months of life. I wish I had that book before Hank died. In one to three months they do start going within - not interested in events and undertakings they were interested in before. I definitely noticed that - not caring about the news, not wanting to read, sleeping more. One thing about the sleep, no matter how much they still feel extremely tired. So, this may not be what your are experiencing, but it could be. When you defintely can not wake someone up that is within minutes of death, so I don't think that is what is happening. Someone said you can download that little booklet (about 15 pages)on line. I am thinking of you.
Wow, does this hit home. My DH sleeps about 11 hours each night and then takes 2 or 3 naps a day, lays on the couch most of the remaining time. He wouldn't do anything unless I make him do it. He has been like this for the last month or so. One day, his alarm rang for 20 mins. and he slept through it. I didn't hear the alarm because I was out side in my flower garden.
I had him at the neuro yesterday and ask the Dr. about taking DH on a trip and the Drs answer was "best do it now, don't wait". Do you think he saw something I haven't seen? Or am I just reading something into this that isn't there?
JudithKB - My DH slept a lot even before the last. What seemed different is that he constantly said, "I am so tired". Of course, he continued to be very verbal, and that may not be the same with others on this site.
Thanks Frand. My husband keeps saying he is so tired too and says I just don't feel like doing anything. He has always been a great talker and still talks a lot to me, but he has kind of withdrawn socially. Your Dh went so fast, it seemed almost unreal to me. What do you think was the major contributing factor to the speed of his downward decline. I know he had that gall bladder problem. My DH has a bad heart and lungs.
JudithKB - I think he may have had prostate cancer that metasticized. That I will never know. I hope the folks from Texas don't take this personally, but I was making arrangement to go to the CARE facility in Livingston since I needed more help. We talked about it on 8/13 and he asked me about it the next day, which surprised me. He loves Oregon, and I know he didn't want to leave his home state. On 8/15 he entered the Hospice program and on 8/16 he started the dying process which took 6 days. It was very fast, and I don't think the norm. When the Hospice nurse told me on 8/15 I should tell family and friends that wanted to say their good-byes they needed to make plans within 30 days that shocked even me. In my mind I thought we would have two or three months. And, I agree with all of you not yet to this spot - you need to enjoy whatever you have for the present, since you definitely don't know the future.
Thanks Frand. I ordered the book from Amazon. Paul complains of being so tired also. He is not very verbal. Social withdrawal has boon noticed the past few years.
The care nurse told me, with my Mom, to watch for the feet being mottled. Her feet were mottled a couple weeks before she passed but cleared up.
JudithKB, I don't know what kind of trip you are planning on taking, but how are you going to cope with him sleeping all the time? Also, with so much sleep, how do you keep him hydrated? Could dehydration be playing a role? I'm just asking questions, I don't have the answers. Depression?
Mary. She said the feet would be mottled and she pointed this out to me on my Mom. But they cleared up and she didn't pass for a couple weeks. I think this is circulation shutting down and in her case it didn't last...Just on this journey and don't know any answers. (Oh, mottled is spotted)
Kitty: He drinks lots of water when he is awake so I really don't worry about that too much. If I make plans and we go some place he seems to not have any problems staying awake. It is only when we are home that he just does nothing and keeps nodding off. The Dr. put him on anti-depression meds and thought that was his problem didn't change a thing so I cut the dose in half thinking maybe he was too doped up, but that didn't change a thing. It may just be one of those phases. When we do do something he is just so tired afterwards. He wants to go to the Grand Canyon. We are in Ca. so I can drive there. We would drive to Williams Az. and take a train into the Canyon area. He has always wanted to do this. He was always hyper and wouldn't watch daytime TV for nothing. Now all he does is lay on couch and watch TV or doze. It is good for me because he doesn't follow me or care what I do.
My husbands decline was only three weeks long. The last six days he was in a comalike sleep. Once every two or three days he would give a one word answer to a question. Never a hello or a good morning when I said it to him. Two days before he died he started the "apnea" breathing. He would forget to breathe for at least 10 seconds and progressively got longer. He didn't eat or drink for at least 12 days, and very little, maybe three or four small bits of food for a week before that. He had forgotten how to swallow liquids we tried a straw, but he only blew bubbles, then we tried a childrens sippy cup and he didn't know what to do when the fluid went in his mouth. Since he seemed to be sleeping and in no pain, I was very grateful for that. His death was peaceful.
Joyce, when you DH got like that, did you call an ambulance or aid car? Was he in hospice at the time? I am so afraid that when the time comes, I won't know what to do. Is that foolish to have that angst?
I asked our GP before I had Hospice for Mom and they told me to call 911.
After Hospice you just call the number they give you and they will send out a Nurse and she will dispose of leftover meds. Check for proof of death, call the Funeral Home you want and see if they can help you other ways. They also call the people to come pick up the hospital bed, etc. that is rented. As soon as my husband gets into part of Stage7, or can't assist with his bathing or in incontinent I plan to call Hospice for an evaluation. That way they will have a nurse check him at home twice a week and I will have the aide bath him 5 times a week. About the incontenance, if he is chair bound I will likely have to place him.
Mawzy, Yes, at first he went to the hospital and they told me the kidneys were failing and he was definitely in end stage AZ. I had him at home, but as death became closer he became unbelieveably heavy even though he was very frail and my son and I decided that we werent comfortable with him dying at home so he went to the hospice house. We did have hospice at home helping. I was concerned with my son's feelings mostly at that time and so I let him go to hospice house. He went there on a Thursday morning and passed away early on Friday morning. They were wonderful in their of my DH and of myself and my son.
The booklet "Gone from my Sight" is only 14 pages and big print. You might be able to get it from the local Hospice - I remember someone said you can download it. It was Nikki http://www.churchroses.org/pastor/gone_from_my_sight.htm That should help you to be more informed about what to expect. Of course if you have enough time you can get in to a Hospice house if one is in your area. Ours was full and this death went so fast there wasn't time. I definitely recommend you have your support in place - someone you can call on if necessary. Many just die quietly, but if they don't and you are alone you may be eligible afterwards for PTSD treatment! As I was going through paperwork I found an 800 number for a 24 hour nurse hot line as a part of my husband's insurance. I think I would have called if it had dawned on me we had something like that. My insurance plan has it, so perhaps most do these days.
Frand-I just copied the web site "Gone From My Sight" into my favorites. It's very informative and the poem at the end is just lovely. Thank you so much for sharing.
My insurance provides a 24/7 advice nurse. I've used them during normal business hours for my knee surgery and my eye surgery. They keep sending me notices and magnets, because they want people to use the service. And in the case of the knee surgery, they called ME for a follow up to make sure I'd done something about it, which I had.
If your insurance has something like that you should get into the habit of using them for other things. Then when you need them for the dementia problems, calling them will have become a habit.
I called my"advice nurse" and the during the first call, I was told that they couldn't discuss my husband without his permission. They offered to call him at home to get his permission. Boy this would have started a good fight because nothing is wrong with him, right?? I told them exactly this and asked for no more follow up. I assured her that I didn't want to compromise his privacy that I just wanted some information. I thought that that was the end of it.
the nurse talked to her supervisor who told her that she had handled my wrong and told her to call me back and give me general information related to AD. Instead of calling me on my work phone, which is the contact number that I had given her, she call my house and my DH answered. He told her that I was at work. At least she knew better than tell him what I had called for. I was put through the "fifth degree" when I went home about my reason for calling them. I told him it was for information about his Vytorin.
She gave me the Internet address for the Alz Asso. I told her that I had already checked that site and didn't really find a lot of information about very early symptoms. This was the reason that I had called in the first place. They were not very helpful. I think that it is because no one really knows that answers.
Many caregivers are not aware that AD patients can (and should) start hospice much earlier than patients with other diseases. lmohr, why don't you contact hospice and ask to have your husband evaluated? They can be such a big help to you as well as your ADLO.
Starling, as far as I know, you can always ask for an evaluation. If it's too early, they won't accept him, of course. But you can learn a lot by talking with them.
One of the people I trust (she is an RN and has one relative with AD and another with FTD) said:
"What I did was to speak to several medical centers near my mother and also the Alz's Org and ask them about the hospices they preferred to use and why. I then called three different hospice organizations and spoke to them re my mother's condition, the likelihood of her being covered by hospice and their basic philosophies and approach to care. From this I made the pick that sounded like the best fit.
"If you decide to call hospice, I would recommend NOT addressing your questions to the admission person who may or may not be a licensed nurse. Ask for the RN Supervisor instead. They are a fount of information and will spend a lot of time discussing your loved one's condition and needs with you. They are also more accurate in their sharing of information and will work with you to achieve what you need to support your LO.
"My mother, like many patients, was not a distinct Stage. She rather fit multiple criteria for both Stage Six and Stage Seven. The RN Supervisors I spoke with at all three hospices informed me that while Medicare criteria for admission involves Stage 7, hospice organizations understand that patients do not always fall into the category in a straight line nor do they have to fill ALL criteria for Stage 7. Just some is okay especially when there are co-morbidities (additional medical diagnoses). Whew!"
Reading this link has brought to mind a question that has been working its way through my brain. Our insurance company has an advice nurse and has send paperwork, made phone calls, etc. trying to get us involved. They've taken a very active (read: pushy) approach to this and I feel they are pressuring us to participate. They've promised special, personalized care and want to coordinate with our physicians, etc. to ensure quality care. The person on the phone with me was really quite insistent. I kept asking why I should have a nurse giving me advice when I have a team of cardiologists that we visit every 6 months. (DH had a massive heart attack in December. Cardiologist now wants to put in a pacemaker. DH says no - no regard to AD, he just hates hospitals.) All of the information from these folks is related to heart disease. Not one mention has been made of the AD.
Here's my question: Can they pressure us into having the pacemaker installed and if not, will it affect the coverage we get if we say no? And, if I explain the AD (how complete can their records be if no mention has been made of this at all? How personalized do they think this is if they don't consider the AD?) Ok, ok, I'm not even sure about the question here, but I think it has to do with whether or not they can accuse me of being an unfit person to be making medical decisions. What do you think? Is this a reasonable concern or just my own brain making trouble I don't need?
Liz, to answer your questions: 1. You cannot be pressured into agreeing to anything. If you have DPOA, the decision is yours. 2. I cannot begin to guess at what will happen to your coverage, since the insurance companies seem to do what they want, regardless of medical or family input. 3. You are not "an unfit person" for making medical decisions. What stage of AD is your husband in? As noted in another discussion, there comes a time when the appropriate treatment is no treatment. Your job is to decide what your husband would want, and see that this is carried out. If he has a "Living Will" (Advanced Directive) you should carry out his wishes as expressed in that document. Unfortunately, this may require some effort on your part. I have seen too many situations where a doctor, insurance company, etc., will try to go against the wishes of the patient as expressed in the living will. This happened to us when my wife's aunt was in a nursing home and they wanted to install a feeding tube. We were the only relatives, and told them in no uncertain terms not to install the tube. They went ahead, and she pulled it out. This happened three times, each time we said NO, they went ahead, and she pulled it out. She had a DNR (Do Not Resuscitate) order, which they said would be cancelled during the anesthesia for installing the tube. The problem was eventually solved when she died.
LOL getting Hospice involved. Now that I have time to think about what happened with us I just shake my head. Somehow I knew something major was wrong with my DH and tried on four different occasions after 7/9 to get Hospice involved. By the time he was finally admitted on 8/15 he only lived one more week. I think the reason they push using the nurse hot line is because it saves the insurance company money in the long run. Still, where can you get help 24/7. I just wish I had remembered we had the service. So much of what I've learned I HOPE I never need to use again...
I have to say that I had a wonderful experience with Hospice. My husband was on hospice care for about 18 months. He too had a heart attack and a blockage that I decided not to treat with anything other that nitro patches and morphine. The cardiologist was very supportive of my decision. I filled out a DNR for my husband right then and hospice was called. The hospital and hospice all worked together and everyone told me I was doing the right thing. When I had to place my husband in a nursing home, hospice followed him there too. Be careful in choosing a hospice - some are for profit and some are non-profit and, needless to say, the non-profits are better.
I hve Hospice now and am very satisfied. Bob's Dr. of 25 years heads up the Hospice LO is in. On his last visit it was the Dr. that suggested Hospice. He said let me know when you're ready, 6 weeks later LO was in and they (the various nurses, nurses aids, volunteers and social workers have been a godsend.
I expect my comments and perhaps even Dr. Welsh's comments to be controversial on this forum. I am not trying to offend anyone, only to express my thoughts and those of my DH BEFORE he was left unable to express same. This is long and will take two posts to complete.
The following article explains so well why I do nothing to prolong my DH's existence and why I reap no joy from his current life and am resentful of having to participate in this charade. I lived with and loved DH for over 30 years and I know if HE knew how he was he would not want to be alive. I also know if I was living as he is now, I would want to die.
From LA Times:
Martin Welsh: My wishes as a doctor dying of ALS
Martin Welsh July 29, 2009
I am a 55-year-old retired family doctor with a large, loving family and innumerable friends and former patients whom I see often. I am an extraordinarily lucky man.
For the last five years, I have also been a patient. I have ALS (or Lou Gehrig's disease), a cruel neurological illness in which a normally functioning intellect becomes trapped in an increasingly weak and eventually paralyzed body. Soon I will die from it.
Through my career, I tried to honor my patients' end-of-life wishes. But after a quarter-century as a firsthand witness to death, I've developed my own perspective.
It's not that I'm a quitter. I have struggled against adversity of one sort or another all my life, and those challenges have helped prepare me for what I face now. I still delight in accomplishing difficult things, and I always wear a bright red ALS wristband that says "Never Give Up."
That said, there will come a limit. I have made it very clear to my wife, my family and my doctors that I want no therapy that will prolong my suffering and lengthen the burden on others. I do not want a feeding tube or a tracheotomy when the time comes that I can no longer eat, drink or breathe for myself.
Physicians and families sometimes feel an obligation to do all that can be done to keep someone alive. I believe this is based in equal measure on a fear of death and on Western medicine's increasing ability to prolong life near its end.
I was able to diagnose myself at a fairly early stage of the disease. My case was slower to progress than some, and so I was able to keep working as a physician for nearly two years. During that time, I was enormously grateful -- for my patients, for sunsets, for golf games with good friends. Life has been truly wonderful, even as I have slowly lost the use of my hand, then an arm, then both legs and my speech.
But as much as I have stayed focused on what I am still able to do, it has become harder to ignore the things I am losing. Today, my guitars sit idle. I haven't used my stethoscope in years. My jogging shoes gather dust in a closet as I watch my belly grow from lack of exercise.
Today, I find myself facing the kind of "quality of life" issues I discussed innumerable times with patients. Answers vary from person to person. But the fundamental question is always this: At what point is the quality of life no longer worth the emotional and physical costs of maintaining it?
I am not afraid of dying or death, and that is a wonderfully comforting thing for me right now. I have seen so many "good" deaths in my time as a physician that I know this passage can be peaceful, spiritual and even comforting to those left behind. I hope for such a death.
I have also started to think about how I will know when I am ready for it. To that end, I often think about what I call the "100 Things."
Here's how it works. Imagine a list of 100 things you do most days. Some are routine, some are "chores," some are pleasurable. Get out of bed and walk to the bathroom. Kiss your wife. Answer the phone. Drive your car to work. Go play golf with your friends. Brush your teeth. Write a letter, lick and seal the envelope closed and put a stamp on it. Hug your child.
Of course we do many more than 100 things each day, but for now, just imagine 100 that are essential to the life you live. Now if you take away one, you can still do 99. Is life worth living without being able to smell the rose in the garden? Of course it is! How about losing two or seven, or 23 -- is life still worth living? Of course.
But suppose you've lost 90 things, and now with each thing taken away, a bad thing is added. You can no longer walk well, and you start falling, and it hurts. Your grip is gone, and you also suffer the ignominy of wetting your pants. You can't turn over in bed, and that also means you will get bedsores unless someone turns you frequently. Life is still worth living, but you're getting tired.
At some point, you can lose enough things that matter -- and acquire enough negatives -- that the burdens will outweigh the joys of being alive. This is the stage when, as a doctor, I would reassure my patients and their families that they had fought the good fight and it was now OK to accept moving to the next phase.
I know I will one day reach that point. And that's why I worry about feeding tubes and ventilators. It has been my experience that these things are at times started almost automatically, and once they are started, they are next to impossible to stop. I have seen too many unfortunate people kept alive for years in hospitals or nursing homes, beyond all quality of life. Sometimes it causes untold stress in a family. Some of these cases even have made national news, and, unbelievably, our government and some national religious leaders even weighed in, as if they had a right to do so.
I worry that at some point a feeding tube, or other artificial substitute for a basic body function, will be medically "indicated" in my case. Intervention at that time might seem to make sense to those around me. But the result may be that I am kept alive only to count off the remaining things on my list of 100, such that I am forced to live well past where I would want to say, "Enough."
I like to know where a road leads before I set out on a journey. Right now, one path I could take leads to a place I don't want to go. I am determined not to start down that path, even if others think I'm being premature in my decision. In short, I may well be ready to die before my family and friends are ready to say goodbye. But they know that, as I face my diminishing list of the 100 things that make life worth living, the choice of quality over quantity has to be mine to make.
Martin Welsh grew up in Los Angeles and graduated from medical school at the University of California, Los Angeles. He now resides with his wife in Camino, Calif. This column first appeared in the Los Angeles Times.
Dr. Welsh's words "In short, I may well be ready to die before my family and friends are ready to say goodbye" describes what is true for my DH and our situation. I know it describes how I so desperately never want to end up.
My DH is an educated man of science and after seeing his own father suffer a horrible death with cancer and while watching my father die of Alzheimers he always said he would never endure the loss of himself and his dignity as they did. My DH always said "I know how to avoid that type of death" meaning he had knowledge of and access to chemicals that he could and would take to commit suicide so as to avoid such a long, ugly death as his and my father experienced. How ironic that dementia robs us of our ability to control even this.
I agree with what he says. I know it is hard for people to talk about this subject, but i believe it is a must for everyone. Like Mr. Welsh, I do not want breathing or feeding tubes.
You may call me an awful person, I prefer the title “realist”. In this awful walk with my DH and his dementia, if there is not to soon be found a “cure” I would hope for it to “morph” into a quick kill like stroke or heart attack. One brief, shining (dull?) moment when cognition fades and reality leaves and loved ones are allowed to say goodbye or joltingly mourn. I have lived with dementia through a parent and now my spouse and I fear it for myself. God help me I don’t want this for me or my family. Either make it go away or make it quick.
Personally my feelings have always been like Dr. Walsh and I am going to copy his letter for my kids. I have already told them my feelings about how I feel. My cousin said she told her daughters when she became unable to take care of herself she wanted them to place her in a NR even if she was kicking and screaming. She did not want them to suffer the agony of 24/7 care of her. I feel the same. I understand others feelings and I think it is a personal situation we all have to live with at some time or other. I have told them I do think we need to do DNR on their father if the situation arrises. I don't think they have completely accepted that in their minds but as he progresses into difficult downward spikes I see acceptance in their faces.
Acceptance to accept the reality of life and death. My Mother in Law watched her 65 year old son go through the agony of final stages of cancer and she told me she had always prayed for God to let him live but during his last 2 days she saw how much he was suffering and asked Got to take him home.
My husband and I both agree with Dr. Walsh. We belong to a group called Compassion and Choices which supports death with dignity, educates people about their choices, and advocates for changes in laws to allow people to make their own choices. In fact dh was one of the people who started the chapter here. It is the only chapter of C & C in our state. C& C points out in its literature that dying as Weejun describes is not suicide. The person who chooses to die this way is going to die soon anyway. He is simply choosing how that death happens.
The thing I find strange even though I understand the reasons for it is that in the states that allowed for physician assisted dying the patient has to have no more than 6 months to live according to two doctors and has to be mentally competent to make that decision himself at the time of death. We know that will not be the case for our LOs.
In Holland "physician-assisted death" is legal under certain carefully described circumstances. I don't know exactly what they are. (It's never been relevant to my personal situation). But brothers, sisters, parents of friends have used this and everyone has been so thankful. The cases that I know of personally have all been terminal cancer. What happens: and I have heard this from friends again and again: is that when the patient finally gets permission, and knows that he will be allowed to die when he wants to, without further suffering, he/she becomes serene and is often able to live contentedly for as much as a couple months before finally choosing when to go. If they like they can make it into a sort of ceremony. Of course, this would not work for dementia sufferers. because, as Janet describes above, here too the patient has to be able to ask for it himself.
When I was putting papers in order and leaving them in accessible places as I was on my way up to Maine early July, I was showing my neighbor-nurse the DPOA. She noticed that it does NOT say "no artificial feeding." From this site, and the Hard Choices article I know that we should never use a tube. But at this point in time I'm not sure how to remedy this. Would my having DPOA be sufficient to countermand it? Should I try to get him to initial a check there? I don't think he'd understand.
Weejun, we all hope for the quick merciful death for our spouses AND OURSELVES. But look at Sandi's plight: her husband "alive" for years.
Weejun, deep down, we all feel that way. None of us want to watch our loved one deteriorate. That's what makes our friends here so special we are all in the same boat, or should I say ship. Hang in there my friend.
We have been at end stage for two years-amazing what the body can endure. It was not difficult for both of us to sign advanced directives. Now that I am at the decision making stage it is very difficult. My husband is mostly non responsive with his eyes closed. Sometimes his legs are purple and swollen while his upper body is icy cold and white. He chokes on thickened liquids and a chopped diet. His hospice nurse wants him on bed rest for the swelling and not to be fed because of the danger of aspiration. The only thing he can still do on a good moment is to sit at the table and feed himself. Sometimes he becomes non responsive with his spoon in mid air. My felling is I do not want him on bed rest. I want him in a recliner in a sunny window so if he has a brief moment of awareness I want the sun on his face. Eating is the only activity he can still enjoy and if it puts him in danger of aspirating-so be it.
Nora, follow your heart. If he can no longer do either of the only two things he still enjoys, what's the point? I think one reason for making advance directives well ahead of time in an objective way is because we know when it comes right down to it, decision making will be so hard. I've been there, I understand. Sending love and support.
Bluedaze those of us who have followed your 2yr plight and your DH's are holding your hand and agree with any decisions you make on his behalf. only you would know what he would want if it comes to choices. loveya. Divvi
DNR has been in place for at least 2 years. Living Will, Advanced Directives, DPOA, Legal Guardianship all have been or are in place. AND our Daughter knows all this and agrees.
Beyond all this, hard as it was, years ago, we talked about passing on and how we wante our funerals. I(f DH had his way, he wanted everything done within 24 hours. I promised to do the best I could, but it might take a little longer. He always said he wanted a plain pine box--no pretty, polished coffin. With his okay, we proposed embelishing it with a plaid flannel lining. Since then, we've decided to go with cremation. Our Daughter told me when she was here, that she wants him to still have his pine box. I discovered the funeral places call all the containers, "urns". So,in doing pre-planning, I will be getting him his pine box (or having ne made.
It helps me have peace that he is not going to be forced to linger, and that to every extent possible, this last part of his life will still be under his direction.
Back at the beginning of this thread, you all were talking about how much your LO slept. My DH is in Stage 4, but he sleeps 10-12 hours at night and takes a 2-4 hour nap every afternoon. Back before diagnosis, he slept 6-8 hours at night and never, ever took a nap. People used to call him the Energizer Bunny. Now he says he is completely exhausted all the time. He has been completely checked out medically and everything is OK. Do you think this is the Alzheimers at this stage?
Might be meds, too, buzzelena. Lately I've been taking tramadol for my sore leg, it's supposed to be pain killer which it is, and I take it when I need it which is about 2 a.m. I wake up at my usual 6:15 but then doze all morning whenever I'm sitting. I just pass right out, very light sleep. I'm sure it's the meds.
Seroquel did that to my DH--had to try another med. He was only getting up in time to take the next dose.
I can nolonger take Ibuprofen for inflamation type pain and Tylenol doesn't address it. Asked if Tramadol would be okay. Tried it. Pain was handles but it slowed my heart rate---I'm the one whose rate is already slow. That'll make you sleepy too.