I've been told several times that good care slows the decline of AD patients. By "good care", what I think they mean is a calm caregiver who provides the security of a routine, minimizes stress for the patient, ensures that the patient is always safe, etc. Obviously, things like other health issues and genetic makeup must play a major part in the rate of progression, but I was wondering how others feel about this and what their experiences have been.
I agree with you, marilynMD, that good care slows the disease process. Even my DH often says to me how much he appreciates the fact that I keep him as stress free as possible, keeps him on his routine, etc. He says how safe he feels with me and he knows he wouldn't still be here if it were not for how I care for him. I know how he gets in stressful situations and trying to do things out of his routine, so I try to stick to the "plan" as much as I can. That means no travel, very few social events, staying mostly at home, although he does still like to go to Lowes to "look around at all the tools". LOL
I certainly hope that this is not true...I am trying my best to give "good care", but the rate of decline seems to be accelerating, and I am powerless to slow it down. Or maybe, I must accept the fact that I am not providing good enough care to slow this disease down. Maybe my "best" is just not good enough.....
Not true, phranque! All we can do is our best - whether it's good enough or not. You do a fantastic job with all you have on your plate and no one could say you don't do your best or enough. Here's to you!!
for what its worth, i have been told numerous time over and over by neurologists, nurses, and hospice themselves, that the ' excellent care' DH has received over the yrs has helped him remain with me for so many yrs. sometimes we tend to put their personal needs over our own which as we know isnt always the best choice for ourselves -we pay the price later-. good nutrition, medications, good hygiene, and generally well provided for care and a loving environment is what anyone needs to thrive -even the caregivers too. whether or not it contributes to slowing down the inevitable is debatable but at least we've given it our best shot. i think it also depends on the progressive nature of each individual persons internal ability to fight the disease as well. divvi
Phranque, My wife Kathryn's rate of decline seems to be accelerating too. I don't think it is because of the quality of care we are providing. I think that either her medicine isn't working as well has it was or it may be that she has reached a period where some simply do decline faster. I am not sure which but I am going to ask her Doctor to re-evaluate her at are next visit. She seems to be having more physical problems now also.
It is impossible to provide care of the quality which we believe it should be, because, if you are like me you will always feel you should be able to do more even if believing that may be unreasonable.
Brain neurons die and a fatal degenerative disease progresses to its natural end. I'm not aware of any research suggesting that quality of care can slow the death of brain cells.
i guess 'slows the disease' would need more explanation. i cant defer to the loss of dying brain cells with reference to varying quality care but would rather defer to the list of accompanying illnesses and symptoms that can add or lessen the progression into end stage. (ie- malnutricion, skin breakdown/infection, urinary tract infections,choking/pneumonia, falls and other factors that can weaken the bodies immune system- and other forms of qualifying care that could help add to the overall general function of helping to keep the body functioning as well as can be within the norms of brain deterioration. we also could assume that any one of the above can hasten loss of function and or death.so that could be calculated in the big picture of whether care influences rate of decline. divvi
Personally, I think (opinion) that quality of care can improve just that..quality. Comfort, painfree, address agitation, keep them clean, loving calm enviroment etc. I don't believe for a second that it has any magical powers to slow this disease process.
We are all providing a loving nurturing enviroment for our loved ones and sometimes they are able to express their thanks. That's great.
But I don't think it has any power to stop the disease process.
In our case, I think that sometimes it has seemed like the disease was slowed by good care, but what was really happening was that DH's actions were supported minute by minute by someone else—me. Every time there was a difficulty, I stepped in and smoothed things over, or added something else to my list of jobs. It looked like the disease wasn't progressing, but actually that "good care" was increasingly picking up the slack, and making things work out.
In the case of poor care, I think sometimes it would make it look like the disease was progressing faster, because there would be no buffer for frustration and lack of ability. But I think that if good care could slow this disease a lot, many of our loved ones would not have progressed to where they are, because they have received excellent care all along the way.
I was just going to post - "No." But that's too terse for the subject. I agree that we pick up the slack so others don't really 'see' the decline as it is. I was a 'good' CG in that I was always there, but I was not always calm, many meals were piece-meal, he wasn't showered every day, neither of us got enough exercise, clothes were clean but sometimes not changed soon enough--it could be a physical battle and I got tired. I'm not sure that good care slows any disease. Meds often make a difference and not giving meds and neglect might hasten things, there still is the emotional and stress part for patient and CG, but, bottom line, I still think the answer is 'no.'
In 2006, when DH was Dxd with VaD, the Drs. were talking discharge into an NH locked unit. I told them then, I believed he would do better at home; that I couldn't do his Caregiving alone any longer, but with help that's what I believed would be best for him. I had already been his Caregiver since his Mental Breakdown in March, 1988. The Drs. went along with my wishes. He is still home. He has progressed from the start of Stage 5, at Dx to approaching mid Stage 6. His decline has begun to speed up. I'm providing his care the best I can, with help. The care is not slowing his progression. BUT--knowing his mental outlook and attitude regarding going into an NH, I truly believe if the Drs. had sent him into one, he would already be gone. As far as I'm concerned, that's 4 more years we've had . . .and counting.
I am not sure if good care slows the decline, but I think extremely bad care could hasten the decline. I am sure no one here provides bad care or they wouldn't bother being here. We all just have to do the best we can and that is all that can be asked of us.
Perhaps I should have worded this thread--"Does stress hasten the decline of our LO's?" To me, one of the main things we caregivers can try to do to provide the best care is to reduce the stress level of our LO's. Their abilities are constantly lessening; the potential for stress is great. Combine that with a progressive disease, and it does make sense that as Judith said, it could hasten the decline.
Carol--I beliieve you truly do deserve full credit for extending your husband's quality of life.
In my husband' case, he has progressed at a furious rate (not 3 years from diagnosis to needing total care) in spite of my best efforts. I did my best to keep him clean, fed, loved and stress free but it was not enough, and there were even times that I think my efforts to do for him what he could no longer do for himself frustrated him to the point that it made him worse. We all know that every case is different, but in my case, I truly do not believe it make a difference.
Last Wednesday I took my husband back home from the Alzheimer ALF. I felt it was not the right fit, too many people, too noisy and so many people much older than him, in wheelchairs, etc. He is very happy at home now. He lost a lot of his abilities while being there for one month. Now he is starting to regain some of the things he used to be able to do. In the beginning he wasn't able to lift his legs to get in and out of the bathtub for a shower, that is becoming easier. He can more easily get in and out of a car, he started using his dinner knife again while eating, starting to put on some of his clothes. He has gotten incontinent during this time and we are dealing with these issues, also getting up in the night. The neurologist and many people at the ALF thought my DH would be better off at home. I have a caregiver come in every morning at 8:30 a.m. unti. 12:30 p.m., also a couple of times a week someone in the afternoon. THe LTC Insurance will kick in soon. I also hired a housecleaning company to clean once a week. I sleep better, knowing he is next to me, I eat better, because I make sure he gets good food with lots of vegies. We started walking again.
I am very happy with my decision, however, I know that I could not do this alone. I so much enjoyed this morning taking a long walk reading the paper in my favorite cafe. I was rested, much more then when I knew he was in a home.
During these 4 weeks I realized what was meaningful to me and what not. Taking care of my husband and providing him with a calm and loving environment was more important than any movie I could see.
However, I am realistic in that I can't do it alone.
I would think Alzheimer’s loved ones are like most other human beings. They would prefer positive emotions (love, compassion, empathy, patience, understanding, joy, gaiety, etc.) and a positive environment (cleanliness, order, tranquility, bright& cheerful, etc.) to negative emotions (anger, impatience, hatred, dourness, etc.) and negative environment (clutter, disturbances, unexpected events, etc.). And so obviously it would be better to provide an AD LO with positive emotions and environment.
I doubt, however, that has anything to do with the progression of the disease. I imagine the plaques and neurofibrillary tangles, the ß-amyloid deposits, and whatever is the biological cause behind it all, doesn’t care whether the AD loved one has experienced a bit of stress today, or had a nice walk in the park. They are going to continue their destructive march through the brain of the loved one regardless.
When I had children, I promised I would never take any credit for anything good that they might accomplish, and hoped that no one blame me for anything bad they might do. Likewise, I will do my best for my husband. But if his particular disease progresses more slowly, I do not plan to take credit. And I sure hope no one blames me if his particular disease progresses more quickly.
I think both answers might be true. When the plaque happens to damage an important function it's not the fault of the caregiving and each person would be a little different. But when good care and a safe environment and decent nutrition are there, both the body and stress of mind would be at better levels helping. My wife is in complete denial about Alzheimer's. She transfers seeing the doctor to being about me. But she always thanks me and I've grown long past teasing her about thanking me for something she's certain doesn't exist.
As with so many others my wife looks to me for her safety and security. She trusts me and clings to that. While I'm here (which is almost 24/7) she seems to feel more at ease and I think less stressed. That has to be a good thing for them. But another point about this is their nature. My wife is calm by nature and up to this point the disease hasn't changed that. When the paranoia, anger, and aggression take hold I feel that would also have an affect on their overall health over time apart from the care they get. Also I think because of the trust my wife forgives me when I get frustrated or upset. There are so few things she can do but she sometimes comes and gives me a neckrub after I've gotten frustrated and says she wants me to be ok. Having some form of meaning with a trusted person seems to me to make her feel good and any sort of interaction like that seems to me helps them. I don't know if it slows AD; but, our specialist said because she is such a calm person the odds were she would be at home with me longer.
I screwed up the first post so will try again. My Carol has been in stage 7 for a year and in a very good NH since January. The care is very good for her and me too. I visit every day for 4-12 hours but the staff does a fine job when I am not there. I tell friends and family that Carol is doing TERRIFIC!!!! Physically she still walks with help most of the time. Likes to read morning paper ads, and stand up and down at a big window. Conversation is nada. I like to think that the CCC where she is staying is very good. A few grouches but mostly very caring and loving staff and other residnts. I tried to keep her happy the last few years at home but my health declined to where I was not physically good enough to give her the GOOD care she deserves.
Good care - loving and tending as well as keeping them clean - does I think often lead to a calmer patient, and a calmer patient leads to a calmer caregiver. Not always, to be sure, but I think it's in our own interests to keep things as calm as possible. Any time they're battering against a door and we stand there saying NO, instead of diverting, or letting them go even if it's not safe; or they want to get out of bed and we say NO instead of providing them a treat to keep them there and calm, then we are providing good care. And then we back off and say, what could I have done to calm things down? What meds should I ask for?
Monika--So glad to hear your husband is improving since you brought him home. I think your example shows we just have to keep an open mind and try different alternatives and care settings to find the best one for our LO's individual situation.
I believe good care DOES make a difference in how our LO's do. My BIL was diagnosed in Jan 2008 with ALZ and put immediately in a NH. The NH was rated as okay or below acceptable. He died supposedly of lung cancer (no one in the family was notified he had this disease) in )Oct 2009. DH was diagnosed with possible EOAD in July 2008, spent 4 months in psych hospital due to uncontrolable behaviors and was slated to go into a psych NH because drs said he could not come home due to safety reasons. I insisted he come home with me and concedede that we would have a 24/7 live-in for our safety. DH has been home 19 months and has not declined significantly during that time. In October 2008 the specialist he saw who confirmed FTD diagnosis intimated he had 2 years or less to live because his decline in hospitals had been so rapid. Now he is on a pleteau which is declining slowly. I have no doubt that being home in a normal environment with people who love and care for him has slowed the progression of his disease. Even his Care Manager cannot believe how well he's done at home. That's not to say good care is only at home...as Billeld said in his post, his beloved Carol is doing well in a place where she is well taken care of. IT DOES MAKE A DIFFERENCE!!!
MarilynMD ... as for stress, as opposed to quality of care, there I would say that does make a difference. Clare always shows the effects of stress and whatever task she is trying to perform becomes more difficult for her when she is under stress. But even so, I don't think that reducing or even eliminating sources of stress slows the progression of AD one bit. I guess the best way to express my opinion is that I think that if we can insure good quality of care and elimination of as much stress as possible, our spouses would feel better and, in isolated instances, do better. And, for obvious reasons, we also would feel better knowing that we are each providing the best care possible ... either by ourselves or with the help of others. But even under the best of care and least amount of stress, that degenerative progression is gonna continue ... no matter what we do.
phranque...go wash off your typing fingers....shame on them for letting you type such a thing...tsk tsk...You do a wonderful job taking care of your DW along with all the other people and things you tend to NOT TO MENTION keeping our spirits up here in Dementiaville. Give yourself a big pat on the back..or better yet we will do that for you..pat pat pat..You are a marvel!! So there and that's the truth... : ) We love you..
Wolf, I think you, and others, have hit on what makes it seem as if good care slows the progression of the disease. I feel that the care we give our LOs which keeps them feeling somehow secure, just as parents make the little ones feel secure. In ways, we have commented that our LOs become childlike and we can all recall how our little kids would cry and fuss upon the arrival of the babysitter when we were getting ready to go out for an evening or meeting.. The house could be a palace or a little jacal and as long as the patient is secure, knows (s)he is protected, and we can keep things on a general even keel it may appear things are going more slowly. If things were frantic, if we caregivers were frantic all the time there would be real hell..( even our pets pick up on our moods...and if we are calm, they are, if we are in a panic or angry etc they pick up on that too.
Semantics....care partner..caregiver....and caretaker....what is the difference between a caregiver and a caretaker?? I think I like what Murray calls me....his KEEPER... and funny thing is that the doctors and nurses seem to understand that term better....when Murray says that I am his keeper, boy they sure understand so much better than a caregiver.....lol
Since I'm at the zoo a lot and accustomed to zookeepers... I'm afraid I identify Andrew as L's keeper from time to time! Not all that different. Feeding them, providing enrichment, giving them baths, cleaning up the poop... just like tending elephants!!
Dementiaville.....what a riot. Mimi, so glad you're here. And Phranque, gimme a break. I'd choose you as my caregiver any day!
I agree with everyone. Yes, no and sometimes maybe. Stress I think may play a role as it seems declines in our house follow travels or visits which seem to be the most stress DH goes through. Reduction of stress and good care may not reduce decline but stress and bad care certainly seems to contribute to an acceleration of symptoms.
I think we all must be for the most part pretty damned good caregivers even as we are our own worst critics. As hard as I am on myself sometimes I know I'd be thrilled and shocked to find myself with someone doing for me what I am doing for DH if I were to be diagnosed with dementia. Ask yourselves that and you'll realize how wonderful you all are.
I tend to think that who ever told you this marilyninMD is not a caregiver. If that was what it would take to keep our loved one with us longer we would all find some way to afford exceptional care. I think we caregivers are doing our level best to be the kind of safe, loving, careing, person we can be while still holding on to some of our own sanity. Like most of the post, I do feel that stress free, calm, scheduled routines, and all the simple things help. We all stay calm and things do look like they are slowing down. Like someone stated earlier, the more my dh regresses the more I tend to do. This makes it look like the disease is slowing down, but if I let my dh try to do the many things I do, then everyone would be shocked at just how bad he is getting. It never ceases to amaze me at the many articles and things people say about this disease. If some of the people that say these things would get off their butt and spend more than a 30 minute visit with someone with this crazy disease, they may have the right to say something like that, but I doubt it. Please excuse me if I am being rough, but I personally feel like that is crap.
I'm going to keep track of one day and count how many things I've just automatically taken over doing, so many that even I am not aware of them. Then again, it might make me feel tired just thinking about it!
mammie--I was told this by several employees at the Alz Assn. I personally knew an individual who received poor care (unsafe environment, basically) and declined as if he had been dropped off a cliff. Then he was placed, and the progression of the disease came to almost a halt, his doctor revised the prognosis and has given him a much longer anticipated lifespan. Thinking about him is what made me start this thread.
I do think good care slows down symptoms. And in some cases, if the care is bad enough it can bring death on sooner.
There is no question that all of the therapy my husband had during his first 3 weeks at the nursing home brought him back some living skills, and made him safe on his feet and no longer a fall risk. They did nothing for his cognition. It was too late for that.
So it depends on what kind of good care, what kind of bad care, and when it is all happening.
ok, maybe I should not have said that I thought that what was said was crap because I do thing good begats good, but I also know that none of us would give bad care if we thought that it might hurt our loved ones. I do know positive makes things better. But whether we do good or bad our loved one is going to fade away right before our eyes. And as morbid as this may sound, even tho none of us want to loose the person we love more than life itself, why should we want to prolong what our loved one is going thru? The more I think about this and I do think about it a lot, I don't know that prolonging the end is necessarily the right thing to do. I will do the best for my dh that I can do, I will be as kind and give as good of care as possible but not just in hope that this disease will be prolonged. I want my dh here until he is too tired to go on and wants to go home to a peaceful place.
mammie, yes. You said it. And it is what I think too.
Bad care can kill someone. That is absolutely true. But the best care in the world is not going to add days to the life of someone who is getting care that is as good as the caregiver can manage. We do the best we can, and we don't need guilt that we couldn't make the disease stop in its tracks.
I don't believe that good care slows the disease - it goes at its own pace. However, good care may be what enables them to make better use of the brain power they still have left for longer. Good care helps to keep them healthy so that may slow the process some.
I think of the good care that my husband gets at his current stage a double edged sword. The good care he gets helps to keep him healthy and they get him up every day. However, in stage 7, the good care he gets is also keeping him here longer in the semi-vegatative state his is in. This is not his defnition of life or what he would want but it is where he is at.
I agree it affects their quality of life more than length. I think of the studies showing how babies who are left alone fail to thrive while those given good care, contact with others thrive. I think the same can be said for our spouses, at least in the earlier stages. When they are allowed to be included, do things they can do, interact with others (as seen by those placed in day care) they will be better. If they are left to themselves, to basically be alone they give up living. My bil did that about a year after his stroke, he just gave up and nothing my sister did would give him the will to go on and he went downhill. There is a point I believe in this disease that it doesn't matter the quality of care, they still will have no life. But in the early stages I do believe it will make a difference. Like the AD drugs only help so long, so will good care only make a difference for so long.
Charlotte, you mean slowing down the symptoms. I agree. The drugs do that. Some of the time nutrition can do it. Good care including socialization can do it. And slowing down the symptoms, especially in the early and mid stages is a good idea.
This disease goes really fast for some and very slow for others, so comparisons are risky at best.
My wife was diagnosed 11 years ago and is in the mid stage somewhere. I would like to think that her slow decline is the result of my tender loving care, and in my heart I think that is true. My head is not so sure.
Good Quality Care can keep a LO in good physical condition and thereby perhaps avoid a secondary illness that could compromise their health. But no level of care or even the meds prescribed specifically for AD affect the underlying illness. For the most part, a person with AD is going to pass when they are going to pass. By taking good care of them we prevent something else from taking them sooner..
Gee, Thunder, that would almost be pleading for poorer care!
Recently my dh was refusing to take his pills -- he had so many. So I called our pcp and he dropped everything but the diabetes and AD med. DH is no longer taking blood pressure meds or cholesterol. The same pcp agreed a while back that dh did not have to go on insulin although his sugar levels indicated it. Instead he prescribed a new diabetes med. There's only been one check-up since but his blood pressure and cholesterol were fine. He had been taking those meds for years, but I think only because they are automatically given to diabetics. (I'm sure that's true of the cholersterol med.)
That brings up a good question. When your loved one is in Stage 7, do you treat pneumonia with antibiotics or not? If they are in a facility, they are sent to the ER and it is a YES or NO question for you. They presented me with the POLST form I signed when he was a Stage 5, that said he could have antibiotics and a blank form that I could sign changing that to "no treatment". I couldn't live with the guilt of no treatment, so now he has recovered from pneumonia and is Stage 7. How come I still feel guilty?
Del, I was faced with the question of treating or not treating pneumonia...my husband (who was in Stage 7 for five years and at home) started with a cough and I assumed he had aspirated some food or liquid. I called for a home health nurse to come to the house to confirm my suspicions and he listened to my husband's chest and confirmed my suspicions. We talked about options and I expressed my concerns over saving my husband for more of the same (near comatose state) for a longer period of time. We spoke to my husband's doctor and we all agreed that it would be better to let my husband go. So, I called in hospice and provided comfort care and my husband just peacefully slipped away after about a three and a half week period. I took his lack of struggle and the ease of his passing to be a sign that he was ready to go.
No, it wasn't easy, but after watching my husband suffer through all the stages and his final years bedridden, it made the decision easier for me. I have never looked back and have never second guessed myself. After over 40 years of marriage, I knew he would never have wanted to live in that condition.
DelS, I am in a similar boat - my DH is stage 7. After lots of thought and prayer, I now have him on comfort care only. This means no, I will not be treating pneumonia or anything else. I will however do the best I can to ensure that he is comfortable and pain free. It wasn't an easy choice or decision and it has been tested a couple of times in his ups and downs. I do know he would not want to live this way - it is not his definition of life.
He was running a fever one night of 102. I was able to keep to the "comfort only" and as long as I was firm, the staff where he is was okay with it. I look at this incident as my dry run and now know that I might really be able to keep to the comfort only.
He did have pneumonia a couple of years ago (twice) - he was in stage 6 at the time. I did have him treated. In one way I am glad I did have him treated because he was still able to interact with me at the time and I got several more months with him. In another way, when I see how he is now in a chair, unable to walk, talk, feed himself or do any of the other ADL's, I regret treating him. I made the best decisions I could at the time and that is all one can do.
You make the best decision you can and go forward. A very wise woman who had taken care of her husband told me that you make the best decision you can at the time but you will probably look back on a few and think "what was I thinking/doing"? She was very right - I do get some of those "what was I thinking/doing" moments. I now realize that those moments are often based on a new or clearer understanding that I didn't have at the time. Even so, I am often second guessing myself while trying to make the decisions that are right and best for him.
I went to his "care plan" meeting today. It is another one of those things that was hard to do and I really didn't like it but I am glad I was there. I got several examples on how I notice so much more than the staff there while we were talking. I was able to reaffirm "comfort only" and give examples on why I think he is uncomfortable. They have already placed a call to the doctor but with my examples will be able to be clearer to him. He now moans/groans a lot when sleeping, I have seen grimaces on his face as if he is in pain and he is much more stiff. They are now talking about a patch for pain for him. This may make him more sleepy but as he is now sleeping most of the time, it won't make much difference. I was also able to restress my priority of keeping him comfortable.
I don't know if this will keep him alive longer or not, but at least I can ensure that he is mostly pain free for whatever remains of his life.
therrja as long as they are alive it is up to us to see that they are comfortable. No reason to prolong the inevitable. These decisions are terrible to have to make. For me it was day to day for far too long.