One of the most difficult things for me right now is the tug of war between hoping (against hope) my DH will get better and fearing that he will be like he is for the next 20+ years. I can't imagine living with the person who is not there, the person who does not talk to me, who depends on me for everything, who (while pleasant enough right now) is simply not the person I married. He is more like a person trying to beamed up on board the Starship Enterprise, but the beam just isn't taking a hold - he's not materializing. Instead, its like he is flickering in and out and I can see images of him, sometimes triggering fond memories, but as often leaving me feeling sad beause a part of me knows he is never coming back. So, when people say, in an effort to comfort me, that my DH will be here for a long time, I can't help it...I cringe inside. I hate to think of him being trapped in this stasis for 20 years, not really living, just sitting and sitting. And, to be brutally honest, I can't imagine sitting and watching him sit and wilt away for a long time in the future. Its like death by a thousand ant bites timed perfectly apart to make the pain more unbearable. Please don't misunderstand me. I love my DH and I am not going to leave him or stop taking care of him at all. It is just such a depressing situation to be in...to want him to be here, knowing he can't, and not wanting to lose him, but knowing I will.
Can any of you identify with how I feel? I tried to explain it to my therapist, and I could tell she just couldn't get it. We had something really special, a "once in a lifetime" kind of love. She thinks I should be grateful for having had the opportunity to have that kind of love. And, I am grateful. But I am only 46 years old. Am I supposed to live the rest of my life being grateful for a past love? Not hardly. Life cannot be lived looking backward or living in the past.
Right now, life cannot be lived looking forward either. I cannot imagine a life without my DH, my best friend, but I also cannot imagine living for 20 years like this.
Does anyone understand what I am saying? Am I crazy? Am I the only one? Is it wrong of me not to want him to live a long time like this? I don't think so, but I feel like it is wrong.
Sharan I don't think you are wrong. I too, hope DH doesn't get into the last stage. Right now his quality of life is very low. All he can do basically is eat and sleep. He does still know everybody and is calm and easy to get along with, but the quality is of his life is poor. A long drawn out final stage would be horrendous for him and me.
Can any of us identify with this??? Oh Sharan, you have so come to the right place! Four years after dx and trying and trying to hold things together with Husband, I've finally admitted to myself that the only way I won't get totally sucked in is to stand up straight, suck in my gut and keep walking forward - and not worry anymore that he never walks any closer than 6 feet behind me. The guy I loved who was my partner in life can't even walk next to me when we're out. We'll not even mention partnering for sex, companionship, business, family, parenthood, enjoyment, life decisions. We just left the cardiologist's office about an hour ago and walked past all their office windows outside It dawned on my that anyone in the office would think that I didn't care a whit about him because I walked so far ahead. But, the day was glorious here in Virginia and the sun was shining and the air was filled with the smells of autumn and I said to myself that it freaking didn't matter what anyone inside was thinking. In my heart I knew I was ok. I knew if I slowed my step, he would too and still be 6 feet back. Somewhere in those thoughts, I found a smile though. Because for most of those 4 years I'd have just felt miserable and only recently did I come to the realization that it doesn't always have to be that way and I'm the one who is not only in charge of his life, but as it turns out my own as well. All of those things you mention about your husband above, I feel. I miss him terribly and sometimes can't even remember the 'him' that he used to be. But I am learning to let my head and heart feel joy when it comes my way.
We recently(last week) got back from Bermuda where my son got married. Everything was beautiful and the kids were surrounded by so much love. But when I got home, I realized that I never actually got around to having a good time because either people were commenting on "how well" Husband was doing or looking around to be sure he wasn't sitting alone in a corner. He was. He has certainly become an albatross and there is absolutely no gratification in trying to have a lovely, quiet dinner with wine and music outside on an evening like this because I'm the one doing ALL of the talking - except when he asks the same question again and again....and again. There is no getting away from it entirely, but I'm beginning to find those secret moments when I refuse to let it take me over completely. For me, that's progress.
I'm very sorry that you are going through all of this too. I wish I had the answers. But I do share your feelings. I'm sure you'll hear from many on this subject.
No, no, no - YOU ARE NOT THE ONLY ONE. When we were discussing drug trials with the neurologist in charge, the basic idea of most of the drugs was to put a "hold" on the deterioration. No one could say IF the "hold" would work, or if it did work, how long it would "hold". It was at the time my husband was mean, nasty, raging, insulting me. I was crying every day. We could not communicate. My first thought was - You mean you're going to give him medicine to make him STAY THIS WAY FOR ANOTHER 20 YEARS?????? Of course, I felt guilty about that, and discussed it with my social worker, who told me that this was a very common reaction.
Thank you for your honesty - I encourage that here, because only other spouses can truly understand what we are feeling deep inside. And how much better we do feel when we know that others share our thoughts and feelings.
I don't hope my hubby will get better---ain't gonna happen. I also know he won't be here as he is now for the next 20 years---heaven forbid! He's lost so much of quality in his life already and it will only continue to get worse. Who in their right mind would wish to prolong this? Don't get me wrong. I have no desire to rush things. If a good, productive treatment became available, we'd grab it. However, that isn't on the immediate horizon, that I know of. I hope to get him through this with as much quality of life and peacefulness at passing as possible. I plan to survive it and continue my life for as long as I'm allowed. I expect to hurt at the actual time of his going, but still I will tell him it's okay to move on to that better place. I will celebrate our victory over this disease, because he will get through it and I will survive it.
How wonderful to see other people write what is in my heart but I probably would not have had the courage to say to too many people. I have told a few close friends that if God would be real good to us he would give him a heart attack before he has to suffer too long. Like most of you have said of your spouses, right now is is pretty calm and quiet, but my best friend is gone and I know that he is never coming back. It makes me sad and I miss him as he was and I am sure that when he is gone I will miss him as he is now to a certain extent but I hope he doesn't go on and suffer too long.
I, too am ready for this hell to end. My husband has absolutely no quality of life. He has not know me for over a year. He just sits and stares or sleeps. This once vibrant, outgoing, intelligent man is now a pitiful shell of himself. All dreams gone.
Sharan, I am going to be brutally honest here. My DH has gained loads of weight, will not exercise with me and had a heart attack two years ago. When we finally got the EOAD diagnosis last week I thought, "well, at least now I don't have to work so very hard every day to keep him alive". As it sounds like it is with you, my best friend and love of my life is missing in action. I have been struggling with a lot of guilt about these negative feelings (I blame 12 years of Catholic school, just slightly kidding). But you know what? We are not Saints. One of the very best things about our marriage has been our intellectual exchanges. We used to spend hours in bed every evening talking about everything under the sun. The night we met (at college) we stayed up all night in the student lounge just discussing philosophy. Now (and this is not an exageration) the only movies my DH can follow are the "Three Stooges" which I watch with him because it makes him happy. Anything with a plot drives us both crazy as my DH cannot remember a character who has been off the screen for more than 5 minutes and keeps asking me "who is that?" when they re-appear. My DH has not read a book in two years. We used to read the same books and debate them loudly with lots of laughs at cocktail hour. At 46, it is reasonable to expect a real love life with your partner, not the life we have been dealt (I am 50). I am sad and angry to have to give up my love life at 50 as well (I guess I am kind of assuming you are suffering this too), after years of kids and birth control and all the commotion, I had looked forward to some very lovely and private love life and I feel cheated completely out of that. I totally get that you are hanging in there with your DH and taking care of him and you are great to do it, but I really believe it is ok to be angry too (I have had an angry week myself). Hang in there for today and keep on this supportive site, thus far it is really helping me (my therapist is also good but doesn't "get it").
I understand each one of you all and your agony over an almost unbearable daily existence. My husband and I had a wonderful marriage and I too expected to live our retirement years enjoying our twilight years. Many of you are still young and vital, wanting to live life fully enjoying their youth. My husband has lived eight and a half years of aphasia language, erratic behavior, gradual loss of memory of me, and no apparent ability to relate to his family. I believe that eventually , if possible, the Alzeimer spouse will be better cared for in a nursing home being cared for by professional staff. Not because the spouse i s not given excellent care by his/her helpmate but because the helpmate cannot continue to sacrifice his/her emotional life, health, for the possible duration of their loved ones life.
My husband will in all probability live a long time as he has not secondary disease or other illnessses in addition to t he Alzheimers. I continue to grieve for what was and is no more and periodicallly I allow the grief to overwhelm me. However, I have lived much longer than most of you, I have made a life for myself, and am reasonably content because I have lived most of my alloted time. I suppose I am urging you not to feel guilty for wanting to live a happy fullfilled life that is their right. So I hope you can somehow find a way to plan a life for yourself, and get help for your spouse through help in day care, respite care, outside professional care.
I may not be understanding your financial situation too well but I do sympathize with you and fervently hope that somehow your spouse can be eligible for professional help.
My husband had several severe heart attacks before he had his official diagnosis of AD. We were so happy that he was able to get well and not have any damage to his heart. I think, however, that the attacks speeded up the process of AD that was in the works for a while. After his heart attack he became a total monster - no physical abuse, but he systematically killed all the memories we had in the past denying them. It broke my heart and there have been times that I wished that he had died with the heart attack. At least we would have had our memories intact.
Sharan, I think your description of the ants biting away, one at the time, is a good analogy. You are younger than I am - I am 71, and I am so sorry that you have had your happiness ripped from you. It isn't fair. Thank you for sharing.
We are all "members of the same tribe". Sharan, I like the Startrek analogy...I've often thought of invasion of the body snatchers.
Liz, I totally relate to the walking behind part.
Sharan...and yes...we had the once in a lifetime love...and I've had people tell me I should be thankful for that-as if it could take away the pain of losing it. Sometimes well-meaning people say off target things.
Fritz, yes I feel cheated too sometimes...I am 50 years old and my partner, my love is gone. And I am left with a flickering image of him that he probably wouldn't even recognize.
And time marches on...and I intend like you all to make the best of it...to grab my joy where I can find it. To make what is left of my husband's life as pleasant as possible without completely losing myself...
Welcome to this site. I'm not sure what I would do without it. I have been asking the same questions that you are asking for the past 9 months. After 8 long years as a Caregiver watching the long slow decline - unfortunately my husband had to be placed in a Nursing Home. It was not my decision - but it was the right decision. I am a little older that you - I am 66, my husband is 67.
The doctors not only tell me he could live for an extended period of time - 10 to 15 years, they also tell me he has the heart, lungs and blood pressure of a man 40 years old. He was always physically active - he was a master carpenter building both residential and commercial until he was forced into retirement because he could not find his job sites, not remember what it was he was suppose to do. I do not think he has been able to read or write for more than 5 or 6 years.
The guilt I deal with is unbelievable because I can not be with him 24/7. If I miss a day of going to the NH I beat myself up more than you can know. Why? I know he is well cared for, and most days he has no idea if I am there or not. Some days I am there several times a day - and I am always there for several hours when I am there. I have no life and feel guilty of even accepting a lunch date with friends, because he can not be there with us. Yet I know he would want me to be happy and enjoy living life. I do not have the answers you are looking for - But it is my hope that someone out there will realize what it is we are asking and find some answers for us. In retrospect, I know he would be there, and so the same for me if the situation were reversed.
My husband has no quality of life - He is 6' 2" tall and weighs 209 lbs, he is in a wheel chair or in bed all of the time. We have to lift him, feed him, bathe him, change him, shave him - he cannot even go with me long enough to enjoy an ice cream cone. I cannot lift him in and out of the car. He is healthy as a horse and strong as a mule. Yet, he struggles to hold a stuffed puppy that he loves. My gosh, he can not even scratch his own nose. He has been unable to walk or stand for the past 6 months at least. The doctor is unsure if his legs will not longer support him, or if he has forgotten how to stand and walk.
He has lost most all of his ability to communicate - if I get two words together and a smile - it is a good day. He may or may not know me on any given day - I think he knows my smell and touch, more than he knows me. He has lost all concept of the word "Wife" years ago. We have not had a 'love life' for more than 10 years - I am not sure I even know what that is anymore. I can not grasp the idea of him being like this, or less than this, for many years in the future. He is unable to even hug me - he is still able to kiss me. That's all I have left of my husband, my best friend, my rock, my reason for living. I keep asking myself - Is it really worth it? I can not imagine someone else in my life - this man was my life.
Am I a sinner, or worse, because I pray nightly that the Dear Lord will just take him home to spare him the future of being trapped in a body that is useless to him or to anyone. When he still was able to communicate all he wanted to do was "Go Home". It was at that time his doctor explained to me that "HOME" is not necessarily a physical place - that is when my nightly prayers began. I cannot stand to see him this way, but there is nothing I or anyone else can do. His name is now on several prayer lists, here in town and in other churches near where we have family living. Last year I found a song that kinda fits this situation - it called "She Misses Him" - it is done by TIm Rushlow and also Diamond Rio.
Be well, and please keep posting - maybe we will get lucky enough to have answers to all our questions.
A few months ago I asked for a life expectancy for my husband. I was told 10 to 15 years. My husband is 70. On the web I found the life expectancy for all 70 year olds, healthy and not healthy is 13 years. This is a man who has a pacemaker, high blood pressure, high cholesterol, type II diabetes in addition to having had 6 bypasses 17 years ago. He scored 11 on the 50 point extended mini-mental test last month. He is in early stage 6 (mostly speech and cognition).
They have got to be kidding. At the rate he is currently progressing he will be in late stage 7 in two years or less.
No, being told he is going to spend 10 years or more as a vegetable, unable to speak and unable to walk is not good news. Would anyone wish that on their worst enemy?
I relate to all of this. I know 10 or 15 years of this, I will not make it. I have thought I would live until at least 90; my mother was 92 when she died. I am not going to make it. We are both 70. I consider myself a young 70. But, I cannot deal with this for 10 years, much less more. He always walks behind me. If I slow down, he slows down. If I go out, he wants to go, but first he has to do this that and the other.,and then he sits in the car and waits for me. What kind of life is this? Today was not a good day. maryd
Thank you all so very very much! It was a hard question for me to ask, but am so glad I asked. I can relate 100% to everything you have said - from the person who once was in the middle of every party talking to everyone to the person who sits on the sidelines afraid to talk to dagma3's comment (with my DH, we miraculously discovered that he had a "widow maker" - 99% blockage of his LAD - in August of 2005 and he had urgent triple CABG - you have to wonder why he was spared only to have THIS?#!).
I believe there comes a time in life when there is no life. It is mere existence and, for those with faith, an existence that is delaying the day we arrive to be with our loved ones on the other side. I cannot even begin to understand why this is happening to you or me or any of us. I believe in a loving and merciful God, one that has a reason and a purpose for everything. Frankly, it is impossible for me to understand why he saved my DH from a sudden and quick death only to replace it immediately with a long, scary, painful deterioration.
Reading this discussion thread has been such a comfort to me. And,no, I would not wish for anyone to have a husband or wife that would live in AD hell for years. And, the sex is definitely not happening. I can't imagine becoming celibate at 46! Faith and faithfulness...I never considered entering a convent! I am angry, but I am not able to feel it right now. Right now, I can't really focus on the future.
Someone mentioned velcro as a good description of our current relationship. It is actually very accurate.
One day at a time, though, we will make it. I will be here for you, too.
May God hold you all in the palm of His hand and restore your strength, courage, and hope.
Went to see my GP today. I have COPD, Macular Degeneration diabetes. My skin is breaking down due to stress. In my heart of hearts I just knew if I did something right, DH would get all better. Today, my doctor told me I was suffering from depression. He put me on an anti-depressant. Then he told me in clear language that the man I married is gone. It's only a shell that's left. I got it FINALLY. I guess I'm a slow study. Intellectually I knew all along but emotionally I just couldn't really believe it. I think I do believe it tonight. I have a lump in my throat the size of a baseball. I can't see the screen because my eyes are so full of tears.
Tomorrow will be another day and I'm going to just do the best I can. I have a guy coming here with an oxygen tank for me. I forgot to ask what my life expectancy is. Right now, I don't really care. But I will tomorrow.
God bless you, Mawzy! I so know how you feel. My head and my heart simply cannot get on the same page. Sometimes, my head is in control and my heart yields to the fact that my DH is dying. During those times, my heart is so weighted down with sadness, the normal sadness of grief. But, how do you mourn the living? Then, at other times, my heart takes control and says things like "see, he learned to play the car game on the Wii with my son; he's getting better; everything is going to be ok." And, yes, my DH does still have good days. I believe AD sufferers can have "good days" - really, days when there are times that they have moments of licidity (growing ever more fleeting with time). As prescious as those good times are, they are also so very hurtful because it is like a cruel joke because it is merely a brief interlude on a continual downward trek. I am trying to make myself be a grown up about this situation so I can enjoy the times that I have left, the good ones, instead of seeing them as a faint reflection and a cruel reminder of what I have lost. Some days during those good times, I can really enjoy my DH. Most of the time, right now any way, I am having trouble enjoying anything. They call that depression and it's true. It is also grief, and a "normal" part of this situation.
Last night, when I read through this thread, I cried. It really helped to really and truly be understood. Thank you all for understanding me. We are not alone.
Comment Author anitalynn CommentTime 9 hours ago edit delete
Oh my gosh.........I could have said all of these words myself. EE...Gods.....I have. This AD world isn't real.....at least not the normal human real world we were used to before this evil entered our midst. I hate this so badly and one of the scary things about it is the more time goes by, the less I remember the norm. Oh, I do remember and I ache for what maybe was even our worst of times in this marriage. Those times were a piece of cake next to this. It's so late now and I am so tired but I had to at least say this in response.
Mawzy, here is another hug! My aunt lived 20 years with her COPD, and she didn't let it slow her down. She didn't have the MD though, and I have not personally known anyone with that medical problem. You have so very much on your plate! I am with you in spirit!
The love of my life and my best friend "left" me over two years ago. I do not want my husband to suffer through his ailments and AD for 20 more years. I do not want him to suffer at all. I do not want him to have to continue living as he is now. That said, I am not ready to give him up yet either. I don't know that I will ever be. However, I know that HE wouldn't want to continue living once he gets to stage 7, so I am like a lot of you in the hope that he will quietly pass in his sleep when he gets to where he is bedridden.
Every single thing said above is the same for me, but we aren't nearly as far down the ugly road as many of you. I just can't imagine what I will feel when it comes..as it will. I relate to the wedding comments as our son was married on Kauai last February. We have always spent that month on the Island, and they decided to celebrate their day there with us. It was such a nightmare for me...I barely recall much of it except my new DIL being terrified as G drove them to the airport for their return...and he wasn't all that bad then!She is a Wellness director for a large retirement community in Oregon, so she KNOWS what is going on. Great way to start married life with new in laws! Needless to say, we cancelled our reservations for this year. (:-(
Mawzy remember how others were helping Nikki with her news of her tumors. Well it is now time I help you. I work for a foundation and here is the address. http://www.blindness.org
Everything you wanted to know about Macualar Degeneration and Retinitis Pigmentosa they will send you free literature. I have been working here for over 11 years and we raise money for research for these and a few other sister eye diseases. Their web address gives you info on medications and doctors in your area. Do not see a optomitrist but see a opthalmologist who specializes in Macular Degeneration. My aunt has it also.
Hugs darlin on your COPD but that is something also that can be kept under control.
Mawzy, although I have asthma, I'm taking a drug that is also used for COPD. And my understanding is that you can get that under control in much the same way as asthma. I have my ups and downs (right now in a down as a matter of fact) but I'm a whole lot better than I would be without the drugs.
I spoke to my husband's family doctor over the phone yesterday. I told him that I'd been told that my husband had 10 to 15 years to go, and what I knew about this disease and what having that many years to go really meant - a decade or more of lying in a fetal position unable to speak or move. I also asked about going to other doctors, and we also hit on the question of hospice (too early) and taking him off some of the non-dementia drugs (not quite yet, but maybe sooner rather than later). He will prescribe anti-anxiety or anti-psychotic drugs as necessary himself.
My husband isn't going to any more regular appointments with other doctors. Just if he actually needs to be seen.
He is going to get me honest answers on the life expectancy and pacemaker battery questions. We both agreed that I wasn't going to get honest answers, but he would.
He actually called me back in response to a message I had left for him. I know he will call me back when he has answers. I LOVE that practice. All of the doctors in that practice take care of their patients. You can get questions answered even if your own doctor isn't available, and get answers in a timely manner.
Starling, I am glad that you have a doctor that will at least try to give you answers. I remain hopeful that I may be able to get some answers, but don't know if that is realistic (sounds like it's not). My DH is on Enalapril for high blood pressure, Vytorin for cholesterol, and a ton of other meds. I don't feel like its time to take him off the Enalapril, but it does seem to be a little nuts to keep him on cholesterol medicine - that's a long term issue and he doesn't have the long term. By the way, he loves pistachios and I am letting him eat them all he wants. If that makes him happy, I am not going to take them away even if it increases his risk of high cholesterol. You know what I mean?
Sharan, thank you for introducing a topic that I have been wrestling with myself over the last few weeks. I'm 50 and my husband is 74. He is now in stage 7. He is in a facility, I see him most days of the week although I have finally given myself permission to occassionaly take a day for me (that was a huge step). I also work full time.
I have very mixed feelings and thoughts on this. I don't want him to go, he has no quality of life, he would say "take me out and shoot me" if he could step out of his body and see how he is, I don't want this to last too long, and I am so ready to step out and live my own life again.
There are a lot of aspects to the disease that can bring death a lot sooner than 20 years if you are set up right. Depending what they are, you have the choice to not treat. You need to think through and educate yourself on what you will treat and what you won't. You may need to discuss this with your doctors. There have been several discussions on this on the site that are well worth reading and thinking about.
My husband had pneumonia twice earlier this year. The first one wasn't life threatening but the second one was. At that time, I wasn't ready to let go as he was still interacting with me. If he got it again, I am not so sure. At this point, I pray that when the time comes and I need to make a decision, that I am strong enough to let him go.
You are so right when you distinguish between theory and reality. My DH told me so many times in the distant past that he NEVER EVER wanted to be on tubes or anything and that he wanted to die if he ever got where he did not know people. His step-father had experienced several strokes and so we saw how he lived and died. Even though my DH knew what he was talking about and I want to follow his wishes, I am not sure I can even stop giving him medications, much less "make the call." I believe that, when the time is right, God will give you and me and all of us the strength, courage, and wisdom we need to make the call and to make it the right call not only for ourselves, but also for our LO.
When I feel down, I remember Proverbs 3 where it says: "Trust in the Lord with all your heart, lean not on your own understanding, acknowledge Him in all your ways, and He SHALL direct your paths." I hope this helps. <<hugs>>
I've read the online books on making end of life decisions and I have already decided no antibiotics. Not just in the future, but none NOW either. No surgery. (He wouldn't survive surgery anyway.) No feeding tubes. No intravenous feedings unless a HOSPICE doctor says it is for comfort, and if it really is end of life, it won't be.
The middle game decisions are things like when do you start taking away drugs for certain conditions - high blood pressure, high cholesterol, type II diabetes. The surprise was the doctor suggesting that the first drug to pull back on was the blood thinner. My husband has gotten to the stage where it looks like I'll be making those decisions soon.
While many of the decisions that must be made in dealing with this disease are difficult, I think the in-between ones are the hardest. Treat or not treat cancer, no longer giving drugs as a preventive (like those for high blood pressure and high cholesterol), replace pacemaker or not.
There is a very fine line to walk when choosing to not prolong a person's life versus actively leltting them go downhill. My husband was recently taken off of Lipator. My first reaction was a bit of panic in thinking what if he had a heart attack. I thought about it for a while and realized that in the state he is in, a heart attack that killed him would be a blessing as he would not go through the end stages of this horrible disease. Right now he is not really suffering from this disease. I have seen several of the people in the facility he is in go downhill and some of them were suffering as they got close to the end. I don't want that for him.
In the middle of writing this, the facility he is at called and said he fell. He is okay. This is the second time in 2 weeks. He has gotten more unsteady on his feet, it walking tippy toe and starting to try and hang onto things with both hands. When I walk with him now, he wants to hold both of my hands, not one. He has always been a very active person and the idea of him ending up in a wheelchair seems like a death knell to me in that once in the chair, he won't last long. So they will be watching him more carefully now and he will be getting a physical evaluation to see where he is at.
It is interesting that you mention Lipator because it is the one I'm going to suggest we discontinue first. It is basically a long term drug and it is not a generic one. As costs become more of an issue, I'd rather spend the money on the dementia drugs because they will improve his quality of life longer.
I know it's coincidence but my husband started showing symptoms of dementia shortly after starting to take Lipitor. There are several well documented episodes of people taking the drug developing global amnesia. One was a surgeon whose wife wound up taking him to the ER he was so bad. After being off the drug for several weeks he decided to start it again just to see what would happen. Guess what-back to the ER. That was the first drug I took Bill off of when I assumed med management.
Is it just Lipitor, among all the statins, that has been implicated in the onset of dementia signs/symptoms? My wife was switched from Lipitor to simvastatin (generic Zocor) by her M.D.. I think it was more of a formulary issue than a concern about a possible adverse neurologic side-effect. Her neurologist at Mayo has never expressed any concern about her being on a statin.
My wife's AD specialist switched her from simvastatin to Lipitor, saying it had some beneficial effect for AD. Due to cost I switched her back to simvastatin. At her last visit with her PCP, we agreed to stop all statins. I'm not sure I can see any change. She is continuing to show slow decline.
Like many people in this situation, I hope that my DH doesn't live long enough to experience the worst of the worst. It's painful to watch him deteriorate moment by moment. I often say: How much longer, Lord. How much longer can I do this?
DH had by-pass surgery nearly 20 years ago, and his primary care phys. is an internist and cardiologist. I hadn't thought about stopping the Simvastatin or blood pressure med. The PCP told him to stop Fosamax (kidney side effects) and prescribed Miacalcin last week. The Miacalcin is a nasal spray that is used every day and the co-pay is 3 times what generic Fosamax had been. I'll need to read the instructions again (and again) before I give him the first dose. Sounds a little like using steroid nasal sprays, so I should be able to manage.
therrja the NH where my husband is has walkers it looks like it is made of PVC pipe and those that must walk and are very unsteady it helps with their sundowning need to be mobile. It looks like a 4 sided walker with a seat and safely straps quite ingenius I thought the first time I saw it.
Jeanen56 - I am not sure I have seen one quite like you describe. The way you descibe it reminds me of those seats that babies use (the ones that have a seat, wheels and are circular in shape). I think he is almost to the point where he will need something like that unless he ends up going straight to a wheel chair.
Sharan - one additional thought. How long a person lives depends on many factors starting with when they are diagnosed, the speed at which the disease goes and their general health. Does anyone know the statistics on the numbers that live for 20 years after diagnosis - are the statistics split out by type of AD? Everything I have read until recently said 3-8 years for most people with AD.
My husband was diagnosed 3 1/2 years ago and in stage 4 then. I think he was being affected by the disease 2-3 years before that. He is now in stage 7.
There is some reason to believe that statins may help prevent AD. There is growing evidence that high cholesterol may play a role in the development of AD, and possibly the course of the disease. High cholesterol is a pretty well-established risk factor for developing AD. Whether or not statin use can minimize the risk is still controversial, although several very recent studies concluded that it can. Clinical trials are currently recruiting to evaluate simvastatin (NCT00486044) for this purpose.
Statins are also being studied for treating AD. Some small open-label and randomized clinical trials of statins have observed positive effects on cognitive function; other studies have produced negative results. Larger clinical trials on statins in patients with AD are ongoing.
Some of the confusion may be due to genetic risk factors -- it isn't clear to me how many of the negative studies looked at carriers of the infamous APOE-e4 allele.
It also isn't clear whether the confusion may be due to evaluating statins in general, or looking at specific statins individually.
For example, you and Marsh may be interested to know that a 2007 study showed that simvastatin is associated with a strong reduction in the incidence of dementia (and Parkinson's), whereas atorvastatin (Lipitor) is associated with only a modest reduction in both which is not statistically significant but only shows a trend toward significance.
Finally, some of the confusion may be due to failure to consider whether women and men may respond differently to different drugs, and/or may have different dementia risk factors.
There is a school of thought that statins and their effect on lipid profiles may be of some benefit in preventing/retarding the progression of age-related macular degeneration (AMD).
Thanks for the info on simvastsatin vs Lipitor wrt Parkinson's and dementia.
Thank you Jenene56. I checked it out. They really do remind me of the walkers that are used for babies just rectangular instead of round.
It looks like he is progressing again. He fell last Thursday and is now unsteady on his feet. They have put an alarm on him if he tries to get up and walk by himself. This may be termporary but it is most likely permanent. It was a shock seeing it on him for the first time - another visible reminder of how he is going downhill, but I would much rather he be safe than care about how he looks.
I, too, cringe, when people (thinking they are helping - they're not!!) say that my husband will be here for years. I hope not - I pray every day that God will take him. He's been sick for 8 1/2 years for sure, possibly 10 years. He's 77, in a care home, and looks like he could be my father. (I'm 63.) In fact, several of the nurses have talked to me about my "father." I correct them, and they are embarrassed.
He doesn't know me very often anymore, he can't talk due to a couple of strokes he had, and he can do nothing for himself. It just kills me to go and see him, but I do. His cousin keeps asking me why I even go. Because he is my husband. But to have him live even another 2-3 years is just about more than I can stand to think of.
Yet another coincidence, Judi, as I am also 63. My wife is 74 and she can't do anything for herself anymore either. On a good day she will say a few words. Most days she shows some indication that she recognizes me. Three times a day they put her in the wheelchair for a couple of hours and someone feeds her. I used to feed her a lot but it made me so tense that I felt I couldn't have quality time for her. Now I try to go after they feed her and give her liquids until it is time to clean her up and lay her down. In the evening I go after dinner and brush her teeth and make sure she is properly prepared for night. Her skin is so soft that if they don't keep a good moisture barrier on her at night is will start to deteriorate. I don't think night shift checks on them very often. I don't pray that God will take her but I do pray that He won't let her suffer. And, I'll keep on going to see her and to see to her care every day because she is my wife.
oldbiker, you got this girl to crying. I feel the same as you, I have never asked God to take Lynn, but I do beg he doesn't get any worse. And of course, that he doesn't suffer. My heart just breaks for all of you whose spouses no longer know you. That is the one thing I am not sure I could handle. He hasn't been able to recall my name a couple of times, but he knew I was his wife and sweetheart. It's enough. I am so sorry for all of you, for all of us. What a horrific disease. The long good-bye indeed. *sigh
What a great thread--I hadn't ever read this one. Thanks, Sharan, for bringing it up. It's certainly an emotional subject and I'm sure each of us wonders how long the disease will take to claim our LO's lives--and the fact that such a long lifespan is possible only makes it more difficult to imagine how we will endure the future. One thing about withholding blood pressure meds--I thought that the main reason to take them is to prevent stroke; would we want someone who already has dementia to potentially suffer further damage to the brain? I have had a brief discussion with our internist on how to decide what conditions to treat and what to let go--she said that the main thing to consider is the tradeoff between the advantages of a procedure vs what it will put a dementia patient through.
I say that my husband has a foot in both worlds now. Four years beyond dx I still see enough of his goodness remains--so even though there are really rough spots and huge losses, he is in some ways still himself. As a matter of fact, for the last 6 weeks or so, I have actually seen improvement in mood and memory (with no medication or other changes). So at this point I pray that he is one of those who has a long life span, as long as he doesn't realize or suffer, but I realize that everything is subject to change at any time.
Zorcor can cause memory problems. It is documented well on the web from personal testimonies. I will add mine to it: my husband was put on it last summer. By the third day he could not remember the name of the person he had worked with all day nor what he had done. It was like the day was a complete loss. I researched that night, told him the next morning and they went in the trash. I know the VA has studies that say it helps AD, but each person is different. The rate of memory problems from my research is 2%. The doctor denied loss of memory as a side effect but I know what I witnessed.
I am glad this thread was brought up - I can indentify with much of it even though my husband was diagnosed with MCI but we both know there is a greater chance than not that he will progress on. Our one fear is that he will linger on as his dad has (20+ years since diagnosis, 1985 when I first noticed personality changes in him). Last night we were lying in bed and he thanked me for putting up with him all these years (almost 38 yrs) - we have been through a lot of stress due to his bad decisions. He doesn't know why I am staying with him - I have two choices: stay or leave. I said I would stay because that is the vow I took. He made me promise I would not do what his mom did - kill myself taking care of him. I assured him I wouldn't.
His mom refused any help and refused any medications preferring tea 3 times a day, gingko, St Johns Wort, keeping him busy like you would a preschooler - otherwise devoting her life to him. Without warning, she dropped dead of a massive heart attack in 2001. His dad is still alive, in good health except for his mind. He walks the hallways all day with a big smile on his face interacting with no one. The nurses love him cause he is pleasant and co-operates. Go figure! As far as we know he is still on no meds. We pray for God to take his dad all the time - hate to see him this way.
As others, if this progresses to AD,I pray that he has a quick progression. If it doesn't, that he stabilizes and will start making himself notes so he remembers. I also pray we find out sooner than later if it is going to. The only test he has not had is a PET scan - will that tell us definitely if there are the signs of AD?
I am of the understanding that until there is the diagnosis of AD, SSDI is out of the question. Right now we live on his unemployment ($229 a week) which has stretched our summer savings further, but that is going to run down in a couple months. Due to the bleak employment, my age and my work history of seasonal jobs, I have yet to find a job.
I am only 56 and do not look forward to spending the next 20 years taking care of him. Other than the MCI, he is in perfect health.
Although it makes me feel guilty, I do not want my DH to live a long time with this. It's good to be able to say it and know how so many of you feel the same. It's such a sad disease.
Maggieroni, we all hope that they go peacefully in their sleep before reaching that last stage. None of us want them to suffer through it. Please don't feel guilty.