Today's blog, which will also be tomorrow's blog is a bit late(okay, a LOT late), because I was out at Alzheimer activities all day, one of which was filmed by the photo-journalist who is working on the documentary we are participating in.
I invite you to log onto the home page - www.thealzheimerspouse.com, and read the blog concerning medical decisions spouses are forced to make. Please post your comments here.
The decision about should I discontinue meds came to me during my Mother's Illness this spring. She was 93 and had old age decline and was taking meds for BP, heart, thyroid, depression. When we signed up with Hospice, she was still walking with a walker. A month before her death, I wondered if I should be continuing to give her the meds for the heart and blood pressure. Her quality of life was zero. She had to be fed and had a catheter. I know she would not have wanted to live like that.
The Hospice Nurses never said anything about her meds and I felt too stupid and maybe guilty to ask what I should do, so I continued giving her meds after she stopped eating and drinking. She lived 11 days. I still don't know what you are to do in that situation.
After all the med filling,counting, dispensing, monitoring, I'm doing, the end of life decisions about meds look kind of easy to me. We already have a DNR on his file. I'll opt for palliative care for most things I can think of. If I'm not sure of a specific step in this area, I'll ask, get informed, then decide the best I can.
Right now I'm juggling 10 Rxs and 2 OTC for him. Most doses are set for now but one is 'as needed', which leaves me feeling on shaky ground--"how stressed is stressed", "how agitated is agitated"? Is this a once a day level event or a twice a day level event? For how long?
Am I comfortable with this level of responsibility? NOT REALLY. Could the timetable for his doses and the dosages be reliably as fine tuned as what I can do for him? Probably not. Do I see any other way to do it at this time? No.
What are my biggest problems about doing his meds? Dr.s who ignore my feedback about the med dosage and/or effect. Changes made to Rxs with telling me. After having to figure out a laxitive and dosage solution to med. induced constipation (pericolace and fiber therapy don't work) on my own, being told it's not good because he could become laxitive dependent. {Is this really a problem given his Dx?} When I asked about trying a certain med for his tremors, being told "it's an old med." dismissively.
When this is over, not having to do his meds will probably be one of the things that gets to me, because it is so important and so time consuming.
Imohr, I had to make the same decision on continuing meds the last couple of weeks of Mother's (age 99) life. I adopted to stop everything except palliative medications. By this time she was diagnosed with dementia following a serious head injury from a fall. I honestly don't think stopping the heart and BP medications made any difference but I would totally support you in what you did, just as I would totally support Carosi in opting for palliative only. The reason: we are in charge and must do what feels right to us. We know our loved one. I would watch Mother's face and work to see it relax. She died with what we all felt was a beautiful death, peaceful, with her family around her. As for other medicial decisions, with DH I decline unless its non-invasive. He's had 3 surgeries and he doesn't need any more unless it will relieve terrible pain such as broken bone. But we know. We are living the disease, we are bonded with our patient and we both struggle daily with the disease. And we must do what we can live with. If that means trying invasive procedures, then they should be tried. If our gut tells us or loved one would decline them, then we should decline them. I will always have the beautiful memory of Mother's peaceful face at death and I continue to struggle to keep DH smiling which right now, at this stage, can be achieved. And so what if he became dependant on laxatives, or codeine or morphine, or whatever is needed. He has lost everything. The least I can do is work for as much peace for both of us as I can grab.
These are the decisions I have made so far. None of them have been implemented yet, but I've made them in advance and I've talked them over with my daughter and son-in-law.
There will be no feeding tubes. No intravenous feeding unless the hospice doctor wants it for comfort. No treatment for pneumonia.
Those are pretty standard. Here come the hard ones. When his pacemaker battery needs replacing, we are not replacing it. There will be no surgery unless it is for something like a broken bone, or something where the anesthesia is minor. From what I've read, most seniors who have surgery for a broken bone don't survive in the long run anyway.
At some point in the end stages I'll pull all meds except the ones for comfort and pain.
There will be no resuscitation. That is how his dementia got as bad as it currently is in the first place. There will be no other heroic efforts either. I see no reason to force him back to live through the rest of this horror. If he goes suddenly, it will be a blessing for both of us.
I decided I needed to make the decisions NOW when I was calm and the actual time to do what needs to be done was far away. I've read the two books on end stages that are available on the net which helped me make the decisions I've made.
Some time ago, I lowered the amount of BP meds DH was taking. Why? Because his BP indicated to me that he didn't need it. The MD we went to at that time was a little Rx happy, and would give him a new med every time we went. No, he takes 4 prescription drugs in the AM, 3 at night, plus tylonol which is optional. He balks at that, tells me he just took them. He has eye drops to take, and balks at that, again saying he just did it. I know he didn't. I do have to sit and watch him take his pills AM & PM or he'll wrap them in a napkin and throw them away. (Like a kid with broccolli) Yes, these are more decisions than I want to make. I'd also like to know the names of those 2 books. I have made no real end of life decisions, except for the living will. Am I burying my head in the sand? I don't really know. Do I need to make those really hard decisions about feeding tubes etc, now? It's more than I want to think about but i guess I should.
I don't know which books Starling was talking about, but a really good one is called "Dying to Know" by Tani Bahti. It was recommended by our local chapter of Compassion and Choices (a group that deals with end-of-life choices). It talks about what actually occurs in the body when someone is dying. It has a lot of information about common myths. One myth is that when someone quits eating at the end of life, they starve to death and that is painful - it isn't true!
I've been trying to decide lately if I should change my DH's aricept to the exelon patch due to stomach upset possible caused by the aricept. I hate making changes and I don't know if it will even make a difference. Our neurologist gives little guidance and says it's up to me. Has anyone had experience with this?
Hildann, my husband was on the exelon patch for 6 months with no side effects. It didn't bother his skin either. However, I didn't notice it made much of a difference mentally. But neither did aricept. Now he is on Namenda. That doesn't seem to be making a big difference either. It's tough to know if its the natural progression of the disease or would it have been worse if he wasn't on it. But if you can avoid the side effects it's a good idea. Hope this helps.
During our last visit with G's PCP, he outlined his own wishes for end of life and signed it for the Dr. records. We have a legal health directive already, but the Dr. wanted one in the file. Zero heroic life saving means at the end...no antibiotics, etc. However, G has a brand new ICD device that should keep going for years.
G has had reactions to all the above meds, as i have mentioned before. Yesterday his Neuro took him off Namenda just to see if that was creating the latest problems. The patch destroyed his body..he was just a large open sore from the adhesive.
At this point my decision is pallitive care only. He is in stage 7. He had pneumonia twice earlier this year. He almost died the second time. At that point, I was not ready or able to let him go and hadn't really thought about that being an opportunity to let him go. They have since given him the pneumonia shot. I am not sure if that was a mistake or not. It is one of the things that really needs to be thought through before saying yes to it.
Starling - learning about your choices and thinking them through now is very good. It really is easier to make a decision when you know something about the ramifications and have thought it through.
If he got cancer now, I would treat for comfort not for life saving.
Handling their medical decisions is a very personal choice. We can only hope that we have discussed the subject enough with them over the course of the relationship to do what they would want.
I do know that if my husband could step outside his body as he is now and look at himself, he would say "take me out and shoot me". He would really mean that. How he is now is not the way he wanted to live.
For those who are interested, I have put Janet's book suggestion on the front page of the website - you can click the title and read the book summary, and if you wish, can purchase it from that book summary page. All purchases you make through Amazon on this website help keep it up and running.
I'm not so much concerned with "end of life" issues, which we have all set legally, as I am the day to day decisions put into my hands - should he take this medication? Should I take him off of this medication? Should I increase, decrease, skip this dosage? From your posts, I see that I am not the only one being put in this position by his doctors.
As far as I know, we have 2 doctors who write on this forum - Marsh and Sandy D. If you're reading, I'd like you to weigh in with your opinions. And I know we have quite few nurses. Is this the new norm - that the spouse is put in charge of deciding which, when, how much, as far as medications?
Vaccinations are intended to "prime" the patient's immune system to produce antibodies against a threat such as pneumonia. It helps protect against catching pneumonia, but mostly in people with healthy immune systems, and even then, it's not a sure thing.
As a patient gets older, and particularly if they develop a chronic illness such as AD, the immune system does not function as well. This means that a vaccine does not function as well.
For example, a recent study by the University of Maryland School of Medicine found that elderly patients needed four times the amount of antigens given in a standard dose of the flu vaccine to have the same kind of immune response as healthy adults under 40.
It is estimated that the flu vaccine protects about 30% of patients over 70. I haven't seen figures for the pneumonia vaccine, but I imagine they'd be in the same range.
My reaction: Wow, not even sure what is the best response to that one. More learning again.
Joan - It was always my responsibility to monitor how my husband was doing on the various drugs he was on and contact the doctor if I noticed a problem. When he could no longer really tell me he was in pain from his shoulder, I would watch how he moved and if he seemed stiff or did some of the moving that he had always done when the shoulder bothered him, I would add Advil to his morning drug cocktail to give him some relief. Even with him in a facility, I am finding that I am the one who usually notices changes first and then I get to push for answers.
therrja, there's been a pretty active thread on "the other site" regarding whether or not to give ADLOs flu vaccines. I get one for my husband and one for myself, religiously, every year. I came within a hair of dying from the flu -- when I was young and very healthy, mind you -- and it's not an experience I'd care to repeat. Rather like the very worst case of strep throat, magnified a few hundred times. Another woman posting there told of her ADLO's experience with a severe case of the flu, in such vivid terms it pretty much brought the discussion to a halt.
But the flu vaccine is not a sure thing for anyone, I think for healthy people it's something like 60% of younger people are protected by it, and 30% of people over 70. Better than nothing, but far from iron-clad. Anyway, I think it's a good thing to do for my husband, 30% being better than nothing, since I know from personal experience the flu is not a good way to go.
Pneumonia, they claim that's a gentle way to go. I don't know, haven't gotten a severe case myself. Agreed to a pneumonia vaccine for my husband a couple of years ago, before reading up on end-of-life choices. Good thing, bad thing ... ? Who knows? Especially if we don't know whether it's going to work.
Joan, when my first husband was dying of cancer, I had a terrible time getting the hospital staff to put up a new bottle of morphine for his IV drip when the old bottle was running low ... they'd wait until the last second so as not to waste expensive morphine, and then something else would distract them and he'd run out, and be in screaming agony before they'd get it up and running again. There is a pump that can be used for intramuscular administration, but none of the nurses on the floor had been trained to use it. Since I was there all the time, they trained me. I adjusted his morphine as needed -- he wouldn't ever complain, but I could tell from the look on his face when he started hurting -- and also changed out the empty morphine cartridges and changed to new needles inserted in different places in his thighs every so often. It was one whale of a lot better than letting the poor man scream. (After a while, when new nurses came on shift, they asked me to train them, so they could help other patients.)
I think it's much better to let someone living with the patient make a decision about whether the patient needs a med adjustment, rather than having to wait for an appointment -- which might take days or even weeks -- and then distressing the patient by having to go back to the doctor's. For so many of these meds, it's trial-and-error anyway, and who better to judge whether a med is helping than the spouse?
My husband and I will get the flu vaccine. We both did get the pneumonia vaccine. Bill has had severe lung congestion several times and Hospice actually wanted to give him Augmentin which I did agree to. I won't do anything to add to his misery. Tube feeds and such are another story-no way. I have been the one to strongly suggest med adjustments all along and my suggestions have been acted on. Even though Bill is placed I will remain his advocate.
I didn't think Aricept and Namenda were doing anything for my husband either. But when I finally took him off them, at the Dr's advice, he plummeted from a mid-stage 6 to an advanced stage 7 in less than a year. So they were doing something - extending the time of functionality - which is what they are designed to do. Sometimes I find myself wishingI had not followed the Dr's advice and kept him on the meds - he might still be alive. Other days, I think it's all for the best. The end is inevitable, why prolong everyone's misery?
I had not thought about the pneumonia and flu shots, just figured they were to be used same as usual. Given the option now we will both have them. If he were bedfast I would not.
In our case I think preventative measures regarding the two would be in order. His physical condition is still good other than the AD, Parkenson and spinal stenosis, and as long as I can keep him on his feet it will be better for both of us. I read here about AD patients languishing in NR for years with AD and as long as he is able to walk and have some abilities being home would be the best option for us.
I have discovered he does not take new meds. well sometime. When he does not take his Aricept and Namenda for a few days he gets almost helpless, falling down and like a zombie. I cut back on his neurotin and changed his pain meds and muscle relaxant and he has had significant improvement. I know it is just temporary but 3 weeks has been very good. This was recommended by our GP.
One of the neurologist we have seen actually thought it best to forgo the meds except for palative care. Today, who knows what tomorrow will bring, I am glad we are on the aricept and Namenda.
I've had the kind of pneumonia where you call the paramedics and they put you into an ambulance and take you to Emergency. I don't remember being put into the ambulance or going into the hospital. They kept me for 4 days on heavy intravenous antibiotics. And Oxygen. I didn't walk for 3 of those days. They let me go home when I finally could get to the bathroom on my own.
It would have been a gentle death if I hadn't come to and dialed 911. I'd have passed in my sleep. I wouldn't have felt a thing.
Starling - Did you call 911 yourself? Just shows you how fast things can happen. If this happened to most of our spouses they probally would not survive. I hope when my time comes I can go peacefully without having someone to care for me a extended length of time.
If my husband did not walk for 3 days, I don't think he could learn again without extensive rehabilitation.
Imohr, yes. I woke up a couple of hours after my husband left for work and realized I had not been sleeping. I'd been passed out. I'd been sick for several weeks and had been to the doctor either the night before or two nights before. I truly do not remember which. I just kept getting sicker and sicker and sicker and it finally got so bad that I really wasn't making much sense when I made that call. I just kept saying, "I'm so sick. I'm so sick."
Two added thoughts. There is a vaccine for Shingles and we are getting that as soon as I can work out the details. We both had Chicken Pox as kids. Everything I've heard about Shingles--the rerun of Chicken Pox infection--is really bad and can last for a longer time. AIN'T NO WAY, NO HOW, I'M GOING THROUGH THAT WITH HIM!!! I don't need it either,and we are in the age bracket when it is more common to occur. Flu shots yes, and his PCP said the pneumonia would be good for any extra respiratory protection he mighjt deive.
OK, you want the opinion of the MD..here goes- I am a firm believer that taking or not taking medications should be an individual choice. Everyone is different. So much of the medications prescribed today are preventive, for example, the cholesterol lowering drugs. There is NO benefit today, that benefit comes after being on them for 5-10 years. So if the life expectancy is only 3-4 years, don't give it. Same with antihypertensives. If there is severe blood pressure and they are symptomatic from it, then give it but if the blood pressure is just slightly elevated then you are treating preventive, not symptoms and it may be appropriate to not give it. Everyone should be sitting with the Dr. and asking, why is he(or she) taking this medication, what are the risks and benefits, not what could happen but what is likely to happen if the medication is not taken. So many of the medications are to prevent a possible event that is so remote it is not likely to happen anyway. Also make sure they know that the medication has been proven by research to be beneficial. For example, many of our newer BP medications have not been proven to prevent strokes or Heart attacks and yet they will choose those over the inexpensive ones that have been proven effective. When my husband starts complaining about his medications, I will start dropping some, I will not fight him on any but the ones I know are going to give him Immediate benefit. All the preventive ones will go, so if he dies of a stroke, then he did not suffer as long with the end stage AD, is that necessarily bad? Drs are not all knowing, and as individuals it is important to make the decisions that are best for you..some will chose to give all no matter what and some will chose to stop all no matter what, neither are wrong, it is what was right for them. You must look at Drs only as a resource for information but the medical decisions should be your own. Think of them as teachers that educate you on what is available so you may choose what is right for you..that is my opinion.
Thank you very much for your input. I really appreciate getting a professional opinion.I fully understand that it is up to us to decide whether or not to give the prescribed medications after we ask all the appropriate questions of the doctor, and I agree with that. I do that all of the time. (Sid's neurologist calls me The Queen of Questions. He says the epitaph on my tombstone will be - "I have a question".) Sid's primary underprescribes, and his diabetes doctor overprescribes. The diabetes doctor prescribed enough Lovaza for an elephant. I cut the dosage in half, and his next blood tests showed drastic reduction in his triglycerides. I have no idea what the number would have been with that massive dose the doctor prescribed.
But the main point of the blog was that the doctor was assigning me the job of "physician's assistant", so to speak. He wanted me to monitor Sid's low blood pressure symptoms and decide if he needed the pill that day or if he needed to go to the hospital, based upon his pressure and his medical conditon. I just don't feel comfortable being put in that position. Which reminds me - I've got to go check his blood pressure.
sandy D Thank you for your insight about medication. Wow..Gives us a lot to think about. Your imput reminded me of the Neuro who said he wouldn't do anythings. When I questioned him about how many meds Paul was on, he told me, Doctors are faced with making a decision of to prescribe meds or not and usually patients are expecting a "miracle cure" so they tend sometimes to prescribe another med. and the family member is happy for a while. (not his words exactly but the meaning is clear)
In our case husband is on pain meds and aricept and namenda. If he was the same without the aricept and namenda I would favor eliminating them. He was without them for a few days and there was a dramatic down trend and I think I am not ready to cope with that as long as the meds are helping. He has a good heart, his bp is way below normal and has always been that way. We are doing the flu and pneumonia. Like you said, each situation is different and each individual has to make their own decision about what is right for them.
Sandi - I wish I had had your imput while my Mother was alive. It would have made a difference with her meds and quality of end of life. I would have eliminated some of them the last 3 months of her life without feeling so quilty.
I am constantly fretting about this subject. How do I know when the pain he is complaining about is real or not? Half the time he only wants an aspirin, which he can't have because of his stomach problems. Then at times I think about what will happen if I make the wrong decision? He is on so much medications I don't know if he should have so many. He takes three for Alzheimer's, no make that four. The psychiatrist added another one last week. He takes meds for blood pressure and colesterol. This is just so much to keep track of. If I don't give them to him myself he will throw them away. I am not a doctor, but they think we can do it all. Watch for side effects, don't do that but do this, it can drive one crazy. At least that is the way I feel. When my DH had a mild heart attack and I took him to the ER just to be sure in case the pain was real. The doctor kept asking him questions even though he was told that my DH had Alzheimer's and couldn't answer him. I felt like kicking that arrogant SOB right were it hurt the most. But what else can we do. There is no one else that can watch our LO and just hope that we make the right decisions.
therrja - my husband doesn't even have to step out of his body to know his thoughts. Our neighbor's mother had AD and was living with them. One day when my husband saw her outside he actually said "if I ever get like that, just take me out and shoot me!" You can't get much clearer than that.
I posted on a different thread about 6 weeks ago that I decided to take my wife off of her meds - Aricept & Namenda. Being on them for over a year and seeing the steady decline and my patience running very thin, I figr'd what do I have to lose? It can't get worse. Well, we did that for a month. Her functioning did not change but her night time "accidents" got a lot worse. No fun. So, I re-figr'd & decided maybe those meds aren't so bad. Unfortunately, I forgot that she had to be slowly worked up on them so I had some sickness to deal with until my 2nd hand AD faded. Up to full dose on the Aricept now, we're about ready to kick into the Namenda again. The night time issues have already improved. SandyD - Much appreciate your input. Some docs are teachers. Unfortunately, there are still many who think they are God and those of us who sit in their office asking for help are viewed as mere earthlings. They simply have no time for this affliction. It's bad for their schedules and cash flow. Sorry, my time is up. Thenneck
I also wonder what my husband would be like if he were not on certain medications. We have been yo yoing his medication for a month, the Neurologist has added & decreased the Keppra & Lamictal so many times I have to check my notes as to how much to give him each time. Then I hear that some memory medication really doesn't help with FTD...can make some symptoms worse, another concern if I take him off the memory medication is he going to go down hill? I ask the Neurologist when he called with this new diagnoses about this concern, his reply was " If it were him, he would take them as long as he could swallow" I guess at his October 1st appointment I will bring this up again. I remember when my husband's mother was suffering from dementia, he stated many times "If I ever get that like that, please just take me out and shoot me" ironic.
It is interesting how we all think it is the memory medications that we will be removing early. But what Sandy said was it was probably the high blood pressure, cholesterol (and in my husband's case the newly added type II diabetes) meds that will probably be removed first. I'll actually be asking about some of those at my husband's next family doctor visit.
Sandi D - thanks so much! We're fortunate that our internist is very sparing of meds.. and so is the neurologist. I have to nudge him to give anything. A couple of days ago when I was at my routine check-up I mentioned that my knee (which has had water on it for about 10 years) was acting up and that the last time he sent me to the PT clinic I just hurt more and more and I just don't have TIME for that now, he said in horror well, you don't want an OPERATION, do you? And I said no, but maybe a cortisone shot would let me walk more, exercise more, which I need. He was ok with that.
I don't have any problem being a health advocate for both of us. I am finally getting around to having some help with home maintenance, etc, but it's a hard habit to break, that feeling that I am the only one holding all our pieces together.
I thought I was comfortable making medical decisions related to DH’s dementia, but now we are adding another medical condition, then another, then another. Since some of these make him absolutely miserable physically, that makes the management even more difficult. I feel very unequal to the task, but there really isn’t any choice.
One way I am getting through this is by collecting the words of other people when they are meaningful to me. Some years back I found this quote. It was what I needed to hear:
“We do the best that we are able, my child. We make the best decision we may, dependent upon our experience and our training. It is what we owe to kin and to those who reside under our care. If it were true, I would tell you that necessity makes us wise. What I will tell you is that we all do our best; that we all make errors; and that those who love us will forgive us.”
I wish I could say all Drs were great but like anything else, there are good ones and bad ones. If you find one with the God complex, get rid of them and find someone else. With a disorder like this, it is so important to have a good working relationship. I had researched AD before I took my husband to the Dr and when we walked in, he talked to me for 10 minutes and diagnosed my husband, without talking to him at all! Needless to say, my husband was furious and would not go to anyone else for nearly 2 years. I then researched very hard, who I wanted to see him and now we travel 400 miles to his neurologist, but that man is amazing. He takes the time to answer ALL questions, mine and my husbands and I like that he does the testing without me, then discusses the results with both of us but I do not have to watch my husband struggle and he spends time alone with him to answer his questions. He keeps me informed but shows such respect for my husband and that is important. He also lets me ask questions by e-mail so my husband is not being reminded all the time by me being on the phone. It works well. Just remember, it does not matter what the decisions are, the end result is going to be the same, so please keep your LO's comfort as your number 1 priority when you make decisions. That is really the best we can really hope for.
I really do wish more doctors would let us use email. I think most of us have found that phone conversations are difficult; we work around them with email. But even scheduling and changing appointments could be handled by email (to the assistant) and if we have minor questions a nurse practitioner could field many of them. My doctors are associated with teaching hospitals and the Brown med. school, and I know damned well they have and use email, are pretty much required to. I even can send email to them at their brown address (since it's listed in the campus directory) but I never hear back from them and am never sure they get it.
Sandy D - thank you for the wealth of information.
His doctor at the facility he is in took him off of lipator and also removed the PRN for Ativan. My understanding of the Namenda, Aricpet, etc. is that they help whatever brain power is left function the best it can. They do nothing to stop the disease. He is still on depakote and seroquel and if he gets very agitated, they give him additional seroquel.
One of the things I like about the facility that he is at is that their philosphoy is the fewer medications the better.
Joan - I agree with you on the "I have a question" bit. I am not sure you can ever ask too many questions and of multiple people along with researching as much as possible. I have a questing mind and need to understand many sides of a problem and think it through before making a decision.
I was never comfortable dealing out his drug cocktail each morning, we had always been very independent on things like that so it was a big adjustment on my part when that was added to the things I was responsible for.
So the question is: Do you really want to get very comfortable and maybe to used to doing something for them that you don't ask a question that needs to be asked?
I dont mind making the decisions at this point for rx's. in the beginning stages your spouse maybe still has some input whether or not they will take certain meds or not. in my case, i am giving DH blood pressure meds, prilosec, bladder meds, and neurontin for the jerking as comfort meds, and have cut out all AD related meds since jan. some decline- some areas are better now. no meds for aggitation- i also hope to be able to offer palliative care options when he further declines or becomes bedridden. we do the flu shots too as preventative as if one gets it the other will too so i dont want him or me to get it..so far so good. divvi
As I think about so many exceptionally helpful comments it seems like we are considering at least 2 issues: (1) How best to function in handling medical decisions (especially medications) as non-professionals and (2) Palliative versue preventive care.
My question: Since I am new as an AD caregiver, at what stage of this disease do you think we should move to palliative care only?
My comment: On handling medical decisions, I think we need brand new ideas for the caregiver who is trying to handle these issues at home without specific training. E-mail md's (great idea), dial-a-nurse trained in the dementias, a home video cam connected to an emergency room, what else? To me, home care is the very best choice, if we could just have some better help in handling it. I believe we need to provide leadership in brand new ideas in treating dementia. For instance, look what this web site is providing! Dede
You pose a very good question - at what stage to move to palliative care only. Everyone keeps saying how this is a terminal disease. It is, BUT, the early stages can last for 10 years. I certainly would not deny my husband any treatment for any ailment at this point in the disease. I think, as the disease progresses, the burden is once again ours to decide how much for how long. As I mentioned in the blog, my friend's husband is confused, cannot remember anything from one minute to the next, gets lost going to the bathroom in my house, yet knows everyone, including her and his children. He has a good quality of life - they still travel and socialize, and when he's "with it", he has a teriffic, appropriate sense of humor. He's a joy to be around during those times. He's 81 with lung cancer that spread to his ribs. She chose to treat it. It's an individual decision.
As for your comment on medical decisions - GREAT IDEAS. That's your new mission - spread the word and try to get those ideas implemented. Maybe you, Marsh (retired primary care doctor) and Sandy D ( practicing physician) can get in contact with each other and brainstorm.
In the area I live, there is about a 1 year waiting list to place someone in a home. It's pretty hard for any of us to know when the time has come but when it gets here I don't think waiting another year is a good option. For that reason, I toured all of the facilities in our area over Christmas time to observe, talk to the staff and talk to the visitors who were there to see their loved ones to try and identify the best place for my wife and get her on a waiting list. I took the opportunity to also ask some questions about the Dr.'s who visited to help the AD patients since I was looking for someone who might possibly care about his patients. One Dr's name kept coming up so I decided to make an appt. with him for my wife so I would at least have a new primary care provider for her. What an experience. He treated my wife like a person and was extremely patient and even asked me questions. This guy gives the medical profession a good name. When my wife's name reaches the top of the list at the AD home, I can decline and let the next person take the spot and my wife's name just stays on the top until I take the spot. We'll hang on as long as possible. Thenneck
When to move to palliative care only? I know that the time has not come for that. It is possible that I'll be removing some drugs early and others much later. I'm pretty sure that he will be on blood thinners as long as it is possible to do a monthly blood test or he is in the last stages of life. The others will depend. I'm going to start asking questions in a couple of months when I see his family doctor.
As for how to best function, I really think that all of the learning all of us are doing here is the biggest part of the process. How do you ask questions or even pay attention to the things that need attention if you don't have a clue.
And finally, what Thenneck did about finding a nursing home is probably one of the best things one can do. I don't think I'm quite ready to do that either, but maybe I am.
That's such good news, for you, Theneck. I also now think that all internists, family practice, etc docs should be required to do a rotation in geriatric psychiatry. That might provide more help for us on the front lines coping with these various dementias. And sometime I'd like to see stats on the % of the population 60 and older that have AD, FTD, Vascular and other dementias. My guess is its significant. Dede
I have had to make some life or death decisiions for my husband during his illness of 8 1/2 years after diagnosis. I have also had to battle with the medical pundits about what was best for my DH's quality of life during his remaining years. To expain this: I battled to keep him from being prescrbed medications that made him into a zombie like existence, that made him fall from the medication repeeatedly, whose side effects could give him diseases like diabetes, heeart attacks, strokes etc. I didn't want to be in agreement to the possibility of him having to live with these diseases in addition to the Alzheimers. I cannnot do much about the path that Alzheimers takes with him but I have a responsibility to make the quality of his remaining years as good as I can.
I would hope that if it were me with t his disease that my husband would be a strong advocate for my welfare which I am sure he would do. Four and a half years a go my husband as a result of Ativan, antipsychotic drugs, repeatedly fell and became comatose due to hematomas in his brain. The neurosurgeon told me that i as the POA could refuse the operation but that my husband would die if not operated upon to relieve the fluid on the brain. At that time, I felt I had to give permission to spare my husband's life as I could not play God to send him to death. My husband has a living will which I encourage everyone to have, I will not ask for tube feeding, or other invasive procedures when my husband because of the Alzheimers is dying. I will allow procedures that will keep him as comfortable as possible during this process. By the way, I had some friends remark that I should have let him die as he had an illness that would kill him anyway and it would be a kindness to let him go then.
I believe that
physicians, researchers should place greater emphasis on finding medications that are not so likely to effect the patients overall health and try to find more environmetal interventions to effect desired behavior. Therapies such as art therapy, music, exercise, and other activities to involve the patient as much as possible have proven to improve the overall behavior and quality of life. My husband is on a very light schedule of meds. He takes transadone for sleep, aricept, namenda, and an anti depressant. I have demanded a role in the medications prescribed for my husband and think that we as the caregivers know more about the needs of our spouses than the medical staff knows . Alzheimers affects each sufferer in different ways and we are in the best position to know what they need and what works as we are with them more than others.
Most people with ALzheimers live for severral years. We should try to make the quality of their life as optimal as possible/
When I was researching facilities, one of the questions I asked was how would I know when. I was told, I would know when the time was right to put him in a facility. I was very skeptical but it really did work out that way.
I think the same is true of pallitive only care, there will be a time when it is right to go that route. In the meantime, I am educating myself as best I can so that when and if I choose to do that, it will be from a knowledge basis and not just emotional.
He is now in stage 7 and to me the quality of his life is more important than the length. He was always adamant on how the quality of life was important to him and if there was no quality, he did not want to keep living. I am respecting his wishes in the matter.
I agree that the Living Will is extremely important. This is the best place we have to make our wishes known and our health care providers can use to it back up their decisions in regards to our care. He did do one and did not want any tubes to keep him alive. Knowing what I know and understand now, I will be making some additional adjustments to mine when I redo everything after he is gone.
Having been away (on our trip to Quebec) for the past week, I am just now reading this thread. Sandy D has said very well how you should relate to your doctors. I am in full agreement with her comments.
Regarding my wife's medications, her PCP put her on Vytorin, then simvastatin when Vytorin was found to have problems. Her AD doctor decided to switch her to Lipitor as it is supposed to be helpful with AD. I cannot see any difference except in the cost - simvastatin is generic, therefore inexpensive with insurance. Lipitor is brand and very expensive. She sees her PCP tomorrow and I plan to ask about either going back to simvastatin or stopping this approach entirely. I will probably continue her diabetes meds since they are generic, but we are not very strict about her diet. I feel that she should get as much enjoyment as possible, and she loves to eat.
Sandy D, did you give a report on your trip to New Orleans on another thread? I would like to hear what you did, etc. Until my wife got AD she and I made yearly medical mission trips to the Dominican Republic. I really miss these trips. My e-mail address is on my profile.