Been getting calls from my family all day asking what we will beup to this weekend. answer, same ole stuff! not a thing. maybe a dip in the pool while DH naps later-my mom is off to vegas at 90yrs OLD!!! with her friends! and my son /and wife are off to the ritz carlton for a long weekend no kids to enjoy kicking back wining dining and relaxation, and my sister is getting ready for a cruise to scandinavia. my brother is golfing in a resort with all his family, my neices etc tonite for a neices graduation party . of course we cant attend. its in phoenix. so i have been thinking of us here on this site, so many of us say our lives are on 'hold' waiting to be able to live again. a normal life again-- we hear it over and over here--, loving, living, laughing, enjoyment out of breathing again. when? many of us worry if we will be mentally,physically able to be able to pickup afterwards and start again. so my question is, if we knew what we know today, would we have changed any ways we have addressed our spouses medical care? i know for a FACT, my DH would be totally mortified to see himself in the state hes 'living' today. he would not have wanted to be kept in his present state of mind knowing what lays ahead. i seriously doubt he would have wanted me to give him the AD meds to 'slow' down the process, but instead would have wanted to end it all himself, but since thats not reasonable, i do believe he would have wanted it to be over as fast as possible. not to prolong the inevitable. its making me wonder if i should have not tried so hard to keep him with me -we are going strong and its been almost 10yrs. i am sure this is not what he wanted for me or for him. i doubt any of our spouses would want us to be doing what we are doing. they would be seriously heartbroken if they could see our lives and theirs. should we give in and allow them to continue their journey without so much intervention ???. so many moral and ethical issues-just wondering -any input?divvi
Good question to pose. I'll bet there are as many answers as there are spouses here. It depends on so many factors. If the diagnosis comes EARLY in the disease, while the person is still active and functioning, I would think they would want to stay in that condition as long as possible, which is the purpose of Aricept and Namenda. Some people remain in the early stages for years. If years in the early stage is a possibility, wouldn't you want to have that time with your spouse?
Then there is the fact that AD affects all patients differently. How are we to know if our loved one will deteriorate quickly or slowly? If we saw a quick decline, would we stop the medication?
Divvi - if it were me, would not take any of the meds to slow down the progression. My hb is 'still' at aMCI, but it depresses him that he has so much trouble remembering.
We drove up north for a job interview at an RV park. I made sure I did most of the talking as what he says often is not totally in context or not related. He does not realize this as I have not said anything in front of others, just silently am embarrassed. Driving home I quizzed him and he remembered maybe half of what was said. I then asked him where we went for dinner for our anniversary last Saturday. He paused and guessed Burger King. I told him we went to Applebees - he said that was what he was going to say but didn't think it correct. I then asked what we did the week before on Mother's Day. He answered nothing. As I gave clues he remembered we went on a drive, with more clues, to waterfalls - but doesn't remember hiking there.
Me personally - if he progresses to AD, I would not give him the galantamine or any other drug to slow it down - if it were my choice. Why would anyone want to drag out a life when there is going to be no quality and we know how the end will be? Why slow it down just to keep them around for us? If he is diagnosed AD, that is a question I will ask him. He has seen his dad in this walking shell for years and doesn't want to be that way. We watched my mother linger on for years due to dementia and a host of other medical problems - no life, just existing. For me I don't want to live that way. My mom always said she would take her life if she ever started forgetting like her mom - well she forgot that. Instead she lived a life she never wanted. When she wanted to die, they gave her drugs to keep her alive. Most recent was watching my 84 year old brother-in-law confined to a bed for the most part after a stroke, dependent on my sister to feed, bath, and change him. He just laid there. He was afraid to die and hung on. My dad had a stroke and spent the next 3 years confined to bed, having seizures, couldn't communicate, drooling, etc. - as much as I hated him and felt he deserved it, I still hated seeing him only exist like that.
So, I have seen too many people just exist and be kept there by medication when that is not how they would want it to be. I do not want that for me. I do not want that for my husband, but he will have to let me know to not give him meds. Now he thinks in MCI, there is still a chance. If he gets the AD diagnosis, then he will have to decide.
divvi-so sorry your families have forgotten you. Holidays alone are the pits. Your question is a difficult one. I can only answer for myself. My FTD husband crashed so quickly that there was no intervention possible. For at least a year he has been the walking dead-and that is on a good day. I still continue b/p meds as he surely doesn't need a stroke. I stopped the statins. Seroquel still needed as deep inside the rage still lurks. If this happened at a younger age I would do everything possible to maintain the function he had in the hope that the miracle drug will arrive.
On another forum, Sunshyne recently posted an interesting perspective on this question of trying to slow the progression of the disease:
<<...the reason for delaying the progression is so that your loved one has a good quality of life. I hope you won't mind my being blunt, but AD is not a good way to die. If we can delay its progression, then we have the hope that our loved ones will die of something else, something that will be much more gentle.>>
My understanding is that the dementia drugs don't add a single day to the life of the patient. They just keep the patient at a higher functioning level until the patient arrives at profound dementia and then they stop working. Once they get to the point where the brain no longer knows how to swallow, or digest food, or hold the body in a sitting position, the drugs have stopped working.
My understanding is that NOT giving them the drugs doesn't make death come any faster. It just puts them into the end stages for a longer period of time.
Now, I could be wrong, but this is what I understand to be true. Like Sunshyne has said on this forum many times if we are lucky they will die from something other than dementia. I miss her too.
Folks--I may be wrong--but this is the way I understand the AD meds. There is nothing currently available by prescription that actually slows down the progress of the disease. There are several classes of medications that work in different ways, but the bottom line is, they do not affect the underlying disease. That's why AD is different than other diseases, the "treatment" isn't really what we usually think of as a treatment. It just makes things a little easier for the patient and family. A good analogy is cold medications--a common cold usually runs about 7 days. If you take OTC cold meds, you might feel better, you may not sneeze as much nor have as much congestion, but it will still take about 7 days for your cold to clear up. So Divvi, I don't think any control of the duration of the disease is in our hands--only the quality of life issues, as Sunshyne said above.
i just read that the AD drugs aricept, namenda, exelon ARE stating that they are intended to SLOW THE PROGRESSION of the disease and help maintain function as long as possible. AND that an AD person will usuallly succumb within 15yrs of either from infection or systematic bodily function failures. if our spouses were in 'early' still functioning stages the question is posed- do we want to keep them in that stage functioning as long as possible? i would say yes if they are one of the few and lucky ones that dont have violent aggession outbursts or humongous detremental personality changes during that time. otherwise like bluedaze's DH some have such uncontrolable violence they have no recourse but to institutionalize early on due to safety issues. its a catch 22 -i guess the real question is how much is the caregiver willing to endure to keep them with them longer-divvi
Gee Divvi, you ask hard questions. Like most everyone here, I have no answers. I did stop the Namenda on Monday after a visit to the Neurologist. So far have seen no difference what so ever. Would not even consider stopping the Seroquel. One of us would be dead in about 3 days.
doneit - good idea. Getting harder and harder to get his medicine in him. He doesn't fight it, he opens his mouth just like a baby bird but then he doesn't want to take a drink to wash them down and wants to spit them out when they start to taste bad.
Divvi--I just Googled Aricept and Namenda, and the drug co's websites carefully word their claims to say "Aricept slows the progression of AD symptoms" and Namenda "treats AD symptoms". I think it is very misleading--neither one slows the disease or treats the disease, they just affect the symptoms. That's why when some patients go off the drugs there is a steep decline, because the drugs were hiding the decline that was still happening. It's weird. Consequently, there are over 90 clinical trials going on, the scientists are desperately looking for something that will attack the underlying disease, not just affect the symptoms.
Divvi - I very much relate to what you are experiencing. I have quite a bit of family in the area, including my mother, who helps with my wife because they love her like a sister/daughter. But it is getting harder and harder to get them to help if I don't ask a month in advance. Her brother and sisters? Forget about it. When wife was finally diagnosed 23 mnths ago, it was "moderately advanced ALZ". I chose to try the drugs thinking we had nothing to lose. After 13 months, I concluded it was a waste of $$. Took her off the Aricept and Namenda and my son, who moved home to help me take care of DW, said we needed to get her back on the meds because she started doing so much worse. My view was she actually was much nicer and cooperative, but agreed after 30 days to wean her back on them. After 60 days, he agreed that the drugs were hurting her more than helping. For her, she is just so far along that nothing is helping, including the depression and anger meds. She is a solid stage 6 and teaters into stage 7 quite often. It is pure hell around here. Professional home care was just a disaster. I hired a "companion' for DW a year ago to cover the times when my son had to go to work and I wasn't yet home from work. As you all know, it takes a very special person to do this, even if its a job. By and large, its gone OK. Yesterday was her 1 year anniversary helping us so I wrapped up a box of chocalates I bought in Germany last year and included a note of appreciation from my son & I for her help. Before I could give it to her, she told me she just couldn't do this anymore. She wasn't able to seperate herself from the mean comments from my wife and was concerned about something happening to her. Certianly I understand that. This is a tough ride. So 1) quit work to stay home and take care of DW 2) start using drop in daycare or (I just can't even believe I've considered this 3) call her sisters and ask them to help 2 days/wk for 1/2 day each. I know what all my family is doing for this Holiday weekend......but we haven't been invited either. Thenneck
I understand that aricept namenda razadyne all slow the decline in regards to symptoms, not the progression. One of DH cousin's has not take any medication. She has declined faster mentally but is still hanging in there physically.
with regards to the claims made by the drug co and or other websites, it is all rather confusing and quite shady. i went to ahaf.org, which has alot of AD research and updated info, depending on what you read in multiple websites about how they taunt the drugs, i read under treatments for AD- "there are currently 5 FDA approved meds to slow the progression of cognitive decline of AD" another- 5 FDA regulated drugs that 'regulate symptoms and DELAY its course," and under aricept, it actually claimed mimimal slowing of progression from MCI to AD. so i do know the actual websites for the disease do relate to delay of symptomology but there is many more websites that state otherwise and lead to misinterpretations. either way i know the orginal questions in this topic was should we give AD meds in early stages to 'delay' the onset of the inevitable.. interesting friendly debate though-divvi
My wife has told me that once she does not know her family, she wants to be taken off the drugs and put into a nursing home. I do not know if the nursing home would cooperate with these wishes or not. She does not want to be a burden.
How sad but it is nice she was able to make her wishes known. As long as you have money the NH will be glad to accomidate her. We have a male friend who has been in a NH for at least 6 years. He has the Executive Suite and it is $60,000 a year. His memory is so so but I don't think he has AD. I think it is just age related. His second wife passed away and his health was such that someone had to live with him 24/7 or else he go to live with one of his kids. He did not want to go live the his kids so he chose the NH. He had a good bit of money to start with but it goes down pretty fast. His kids go get him several times a year for holidays but he soon wants to go back to the NH.
moorsb, if you have her medical power of attorney the nursing home HAS to do what you instruct them in regard to her medications. Also, you need to be very sure that a DNR order is in place. For those with older spouses, it is not doing a kindness to have CPR done on an older person, as ribs are often broken and will not heal, so the person is in constant pain for the rest of their life.
Oh Divvi...reading through the lines totally understand your message. Found myself silently crying on and off all day...crying for what I cannot have right now...crying for the wonderful holiday weekends of past. The promise of summer fun to come.
I hear two questions....one; will we be healthy physically and mentally to have a life after AD. When will it end? And secondly how much is enough. After 9 years I wonder is this all worth it...chasing the clinical trials, trying anything that has a hint of helping...helping what? to prolong a quality of life we both said we did not want. There is no cure and you are right, all the meds do is aleviate the symptoms. I am a firm believer a dead neuron is a dead neuron.
At this point in our house, DH is still able to get joy from certain things so we move on. Continue chasing the "cure",taking the meds. I guess for me that is the benchmark...not sure how we will face the final stages. I have always been in awe of people who are terminally ill and fight to live. The will to live is so powerful. It is usually severe pain that makes them wish for the end. I guess we can at least be pleased that AD is not a physically painful death.
I do know when the end is near I will do nothing to prolong his life. Same for me. Told my children all I want is a painless dignified death and one big cocktail party (with music ) when I go! Will haunt the hell out of them if they don't.
PS Divvi...as a member of a hospital ethics committee in my previous life...if your loved one wanted no intervention and made that clear, then it is your responsibility to see that his wishes are carried out!
Both of our wills and living wills state "No heroic measures' to be taken. DNR also. DH just turned 87 and I just had my 78 b'day. I'm not particularly depressed--I just don't want to hang around when it's time to leave. He told me the same thing many times. All of our children are aware of this as is our PCP. I hope it's all taken care of now.
I have been reading post made at this sight for some time. This discussion has inspired me to join......I just have to say after reading all the post on this subject so far, why would any one not give meds to someone who was not in the last stage? I don't want to offend anyone but I would so much rather my husband get the meds and have what mind that he has than to see him lose his mind but still have a somewhat healthy body. At least he is not just existing, he dose have some enjoyment in life. I will give him his meds as long as they are doing him some good. Gail
Welcome to my website. Glad to see you decided to post. If you have been reading for some time, you know that the issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 3 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). I just added the HBO Alzheimer's Special - you can click on that section and view the entire series or choose which segment to watch. Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
I agree with you about giving the Alzheimer meds as long as they are doing some good, but when their quality of life becomes so poor, and the disease keeps marching on, I would probably stop the meds. But on the other hand, I doubt I would know what I would do until I was faced with the decision.
Lois - $60,000/yr at a nursing home here will get you a room near the elevator, or whatever. Certainly not the executive suite. I'm being told $80,000 is the going rate.
That is what I was told by the family last year. We are in a rural area of WV and I am sure Nursing Home costs are less than near large cities. I will try and check again soon. Seems like everything raises every year. Also, he is not bedfast and level of care needed may enter into it also.
Gail, by the time our spouses are in stage 7, they have no quality of life left. Mine can't talk, can't read, cant's write, can't dress himself. He CAN barely get a fork or spoon from the plate or bowl to his mouth, he can walk slowly, usually shuffling his feet. He is almost blind. What quality of life does he have? None. We are keeping the body going. That is all. The mind is not in the body. The person he was left this body two years ago. He can no longer think, reason, or receive pleasure or pain.
YET IF A STRANGER LOOKED AT HIM, HE LOOKS NORMAL!!!!!
I agree with Divvi 100%. I have kept him on Razadyne and Namenda so that he will hopefully be able to walk, help me dress him after I've bathed and shaved him, and feed himself after I've cut up his food - until either a heart attack, stroke, COPD or VaD takes him from me. Divvi's husband is still going strong without those drugs! I don't know that the drugs are helping my husband maintain the little he can still do or not. Since he has no side effects from them, I'll keep him on them for now - if I can stop him from trying to chew the Razadyne capsule or get it in liquid form!
It is not a question for me, since our road downhill was fasttrack all the way. He was diagnosed 2 years and 3 months ago, even though I knew he had it a year earlier but couldn't convince his doctor to perform the tests at that time. Still, 3 years from normal to stage 7 is fast. Sometimes I even have to check and make certain he's breathing when he falls asleep in his recliner. It's not a great way to live.
I'm afraid that most of us would do what we can to keep our spouses functioning and at home (as long as there is no violence and rage and they are not a danger to us) with the help of these meds....the alternative is that they would be in hospital beds or nursing homes while we went to see them instead of at home with us.....Financially, this way is easier for me. I lost my husband three years ago. I'm just taking care of the two year old who is occupying his body and I'm cleaning up his messes, and I'm trying to maintain his routines. Hopefully, one day, he'll go to sleep and not wake up. The easy exit for him. It will be hard for me whenever and however it happens.
Those whose husbands and wives are in stage 3-5, I can see where you may still have some of your spouse's personalities present, and I hope you cherish those moments. They will subside slowly into the abyss of this insipid disease.
My husband is in stage 6. He was dignosed around 7 years ago. I know that as the disease progresses that the quality of life dose too. I also know that different people go through the different stages at different rates. I believe everybody has the right to follow their own heart on the matter of wheather to treat or not to. My thoughts was that I don't know why anyone wouldn't want to give meds to keep as much quality of life as is possable at least untill it gets to the point where it is no longer being productive. Several of our friends have had AD and only lasted 3-5 years. I really believe the meds. have helped to keep DH with me at a more quality of life than if he had not taken the meds.
Gail, I agree with you...that's what I was saying in my rambling way....but as fast as my husband has gone downhill, the only quality of life that he has by taking the meds is that he is at home with me instead of in a nursing home...<sigh>