I had a very strange revelation recently - I invite you to log onto the home page - www.thealzheimerspouse.com- and read today's blog about denial. I really am extremely curious to hear your reactions to my thoughts.
Joan from a psychoanalytical point of view what you are doing is a way of coping and shielding yourself from the pain of what the future will eventually lead to. all of us during the early mid stages after dx get a little accustomed to the humdrum lives we are leading and most of us have the hopes that the AD drugs are doing their jobs and protecting from further decline. thats what we want to believe but in your hearts we have instances that sneak up on us and remind us that this is only temporary and the inevitable will always be pending. at least this is what happens to me. most days i go about the day thinking this can be ok and i can continue like this forever. then the next day a new deficiency can be noted and i know that it was all only wishful thinking. the finality of the pain and suffering is too much to bear so we find optimal signals daily that keep us complacent and just within the realms of reality. there will come a time soon enough when things will bottom and we will have no choice but to face the excrutiating truth in the end stages. divvi
Joan: I didn't think I had ever denied my husband's illness but after reeding your post I suddenly realized that I have in the past had a form of denial...For a very long time I kept trying to relate to my Earnie as my husband still, with the same intellect, cognitiveness, and personality that had made him my best friend for most of our lives. I desperately held on to an existence that was simply no longer . I could not in my; heart of hearts admit that DH would never be home again functioning as his unique self. Finally, i had to let go and the pain was excruciating. I now cannot pretend any longer and my loss is constantly with me. But I know for me to survive I had to realieze that I had to make a life for myself alone without him. THis is part of the journey we travel together and then inevitably apart.
When we got up this morning my wife seemed happy, and almost like her normal self. Then she didn't like the breakfast I prepared. Then she got completely confused taking her pills. I was in denial in that I thought she was much better than she was, so I got impatient with her. I've got to realize that she is in stage 6, and won't ever get any better (unless coconut oil works).
Like many of you hearing the actual words of the diagnosis "Alzheimer's Disease", while devasting, was also a relief. Now we knew what we were dealing with; it wasn't his fault and he wasn't just being an inconsiderate jerk. I've read so many books and articles trying to educate and prepare myself so that I can do my best for him. No matter how straight-forward or graphic the books are, nothing slapped reality into my face like this web site. Reading about real situations from real people brought me to a whole new level of reality that no professional article could ever come close to touching. Through all of you dealing with the advanced stages, I can clearly see my future and it scares me. I think I accepted the reality of his fate almost from the beginning, but I am just starting to understand the depths of my role in his reality and what will truly be expected of me. I am afraid I won't be strong enough or good enough for him. I want to and I can't imagine not being there for him. Abandoning him in any way is not an option I would ever consider. I feel like I am drowning in this internal struggle.
Stephanie, I know exactly what you mean. This site is believable. Real life episodes told by the people involved and nobody understands as well as someone going through something first hand. Just like a male Doctor trying to explain to a pregnant woman what it is like to have a baby. NOBODY could explain that as well as a woman who has been through the actual process.
And to read here about some of the therapists comments, its unreal. I went to a therapist once several years ago and other than take my $50.00 I could see no reason for her to have me come back. So, I didn't. Talking here with my keyboard is much more beneficial to me personally.
Joan, when I read your blog, it seemed that you were describing me exactly. My DH is around stage 4 with some of stage 5. This is probably the stages where denial of the future is. I, too, find myself thinking that he won't go through the end stages. I latch onto every new thing I hear about in hopes it may keep him from going there. After Aricept and Namenda, I read that cinnamon and tumeric would help. I'm giving him that. I'm checking drug trials. Now I hear about coconut oil and wonder if that's the magic bullet. It's hard to accept that there is absolutely nothing we can do to keep it from happening.
You who are dealing with the end stages.....did you also have this kind of denial in the earlier stages?
I do. Everytime there is a ray of light coming through, I latch on to the idea maybe, just maybe a miracle has happened. And I don't necessarily think that is bad. Isn't it better for us to have "hope for improvement" instead of accepting a death sentence and get ourselves into a deep depression. How would our health be if we just completely discounted there MIGHT be a miracle drug that would turn things around.
One might compare this to the pleasure we gave to our children with Santa Clause, Easter Bunny and the tooth fairy. If we had never let them experience the "highs" as well as the "lows" would they not have missed something? Are they worse off now for believing when they were small? My son and family did not do the Santa, bunny, tooth thing with their children and the rest of us always felt sad for the pleasure they were all denying themselves. That doesn't mean I think it was wrong, but what it right for one person may be wrong for someone else.
I choose to try and remain positive as possible during this journey, while knowing full well it would take a "miracle" to change our course.
I would not call it denial, I would call it hope. The majority of AD patients never suffer the last stages, and I hope and pray my husband will be in the majority.
And I also hope that I'll find treatments -- through clinical trials, or new meds receiving FDA approval, or improving his diet -- that will help keep him in the earlier stages longer, and improve his chances.
Like lmohr, I think it's better to have hope than to keep sinking into gloom and doom and live in fear. I realize my husband's AD is terminal, but there are so many things that can happen before he reaches the end. My neighbor's mother had a gentle journey, why not my husband?
My husband and I have only been on our journey for 1 year, but in that year I have felt more emotions than I care to remember. Hope/denial? I think they might go hand in hand like love and hate. I ran him from doctor to doctor, looking for someone to tell me that he could be helped, that he could be better and when no one could tell me that I felt rage and anger; at him, myself and the doctors. The rage and anger seemed to slip into depression and despair quite quickly as I looked to a future of full of nothing but decline and sorrow. When I first found this web site I read for several days before posting. I read and I cried. I cried for the spouses of people who were worse than my husband, feeling their pain and I cried when I read of people who were still functioning, probably out of jealousy that they could still interact with their spouse. After a couple of days,I thought "this is silly". Just a bunch of people complaining about the spouses not being able to "hit" the toilet when in reality they are dying. But......... Isn't there always a "but". But then, as I read more and more, personalities and feelings and humor began to show through and I realized that I was not alone. That everyone on this site is going through the same emotions as I and that by going through it together makes so much difference. If today's issue is missing the toilet, we will deal with it and if tomorrow one of us loses our loved one, we will deal with it. But the main thing is that we will not deal with it alone. Thank God for this place.
I think maybe Sunshyne is right.....it's not denial, it's hope. Sunshyne, is it true that the majority of patients don't go through the end stages? I know you eased my mind one time when you said only 1/3 go through the violent/rage stage. I hope I remembered this right.
Thank you all for being there. I've been reading for months now, gaining information and learning that there are so many going through this same awful disease. I guess I'm in denial too, hoping things will get better or at least stay the same. My DH has been diagnosed for almost a year, but I know he's had it much longer. He has Lewy Body Dementia so he also has terrible Parkinson-like problems along with the dementia. I guess he's pretty advanced now since I do all his hygeine, he can feed himself and goes between a walker and wheelchair depending on how things are going. We're into Depends now also but mostly for misses, he still knows when he needs to go. He pretty much needs me around whenever he is awake. Sometimes I just cry out,"I want our life back!" I know that's not possible. I grateful for my health and strength and God's grace. I also grateful for all of you.
I find it very hard to admit that I hope he has a major heart attack, or the pacemaker just stops working, or he has a stroke BEFORE he hits stage 7. If that is denial, I guess I've got it.
nancyt, of course you want your life back. I do too.
When my husband was in cognitive therapy I lost my access to all of the things I had been doing before that was fun. I wanted my life back then too. And back then he was more than capable of driving himself to therapy. But there is no question that I was in denial at that point, and I had no idea of where this was all going. But I also didn't have a diagnosis.
And then we got the diagnosis, and because it wasn't Alzheimer's, there was the hope that where he was was as bad as it was going to get, because his dementia was Event Driven and maybe the brain damage was where it was going to be for the rest of his life, but wouldn't get worse. And maybe that was denial as well because it certainly is much worse now than it was 18 months ago.
Maybe the worst part of this disease for the caregivers is when you have to give up all of that denial and and any hope and just recognize that you are on your way to hell and there is nothing anyone can do about it.
In 1993, after years of feeling 'something' was wrong, I took DH to the family doc. I told him what had been happening and said, "If it's Alzheimer's, don't tell me, make something up. I just can't deal with that now." Denial?
Essentially he did as I had asked and I then lived comfortably with denial for several more years. It didn't hurt DH or me one bit. I think we were both happy.
Thank you for this site, it has value beyond recognition. I am new, so here is my story - I am 50 y/o. My 58 y/o wife was Dx in June. She was fired from 4 jobs over the last year and a half before I struggled and finally got the diagnosis. For what it is worth I could only get the MCI dx. (Long story for another post) At age 50 I have 15-20 years of employment ahead of me. She is now 'retired' I have to remain working. (fortunately it is a very good job)
She is still fully functional in her ADLs Aricept has been a very effective treatment. I can easily tell if she has missed a dose.
We are both RNs, married for 20 years. We met while working at a trauma center Emergency Department. I have worked in long term care and know it aint fun at all. I have also studied gerentology. While I have not worked in hospice, I have certainly studied it enough too.
Denial? I dont think so. Since the diagnosis I have been taking the scientific approach (my defense mechanism) and am currently reading everything I can about AD and studing to become a certified dementia care practioner. I feel a need to become an expert on the topic, I am sure you all understand.
One thing I keep learning and cannot deny, is that the AD diagnosis is a TERMINAL diagnosis. Just like cancer, COPD or heart disease there is no cure. The only real difference is that the cancer follks get off easy. For them it will be all over in 2-3 years and they can then work their way into the 'acceptance' phase. Us AD families are going to endure the slowest most painful demise imaginable.
Denial? I know what my future will bring. Perhaps because of my dementia studies and nursing experience I find that I now get angry at people who say that cancer is so terrible. October, breast cancer month - I know what is comming with the AD and I would swap a cancer death for an AD death.
"Starling" I fully understand and agree with your statement about pacemaker failure. . .
Denial? I dont think so. My current issue is trying to decide when I will stop her blood pressure meds. She has had regular colonoscopies and polyp removals in the last decade. Can anybody tell me why she should ever have another?
Denial? Even though we are very early in the process, my goal is to accept what I know is enevitable and work to allow her body to fail at the same rate as her mind. Am I the only person who is thinking about treating the pre-existing, underlying problems less and less as time goes on to match the brain failure?
My LO is 62, probably stage 5, going into 6 sometimes. I didn't think I had any denial but when he started having double vision I took him to the ER, thinking or even hoping, that he had a brain tumor. They could remove the tumor and he would be well. When they gave him a CT scan and found nothing I was disappointed there was no tumor, sounds sick, I wished there was a tumor in his brain. I guess that was denial with touches of hope.
m-mman I am an RN also. Took a while to differentiate my husband's bad behavior from FTD. As we know-dementia is terminal in it's own time. Making decisions about unrelated pathology is a bear. It takes me back to an unrelated incident: a fairly young woman suffered a severe stroke and was very depressed. She jumped from a window and only injured her good leg. Moral-do we want to make their remained time with us more miserable. We all make our own decisions. I have chosen to continue to treat hpertension as I don't want to deal with a stroke. I have d/c'd statins and the AD meds that no longer work. I ok'd a flu shot. Day to day is what it is all about to me. As you continue with us you will learn how individual we are/ Welcome to the fold.
m-mman Welcome to our group. Sorry for the reason you have to be here but we welcome having more and more people who are dealing with this horrible disease. I look forward to your thoughts about the trials we are going through at different stages of the disease. We have Nurses, Doctors, Scientists, and many other posters along with many other professions as patients or caregiver. And this is a non-judgemintal message board.
I think eash of us has to decide how to proceed with medication removal. My husband is basically healthy as far as heart, lung, etc and just takes Aricept, Namenda, pain med. for spinal stenosis and nerve and anti-depressants. I rate him in late 5 and early 6. If he doesn't take Aricept and Namenda for a couple of days he goes in a deep spiral downward and after taking them returns to improvement. From what I understand those meds are keeping him in the more functional phase for a longer period of time and it would not be good for us to make changes at this time. His other meds basically are pain control and relaxants. My goal is to keep him in as functional a state as possible. He is still walking and talking, hygene, mood calm. I want to avoid NH if at all possible but know it may be necessary in the future. Currently I have been experimenting with the cocanut oil and flax seed oil, figuring I have nothing to lose. He can now draw the circle for the clock face, something he has not been able to do for 5 years. I am going to test him on this weekly for improvement.
My Mother passed in May from old age decline. I had hospice and she died in my home. She had a pacemaker, blood pressure, heart, thyroid etc. I wished many times, for her pacemaker to fail and relieve her of her suffering. I wish I had seen this forum during that time. I continued with her meds until the last 2 weeks because I felt guilty not giving them to her. I was afraid she would have a stroke and make things worse.
You are both so young and you have to work. It is much more difficult for your situation and I understand how difficult this is for you. I am sure you will get a lot of comments more helpful than mine but I will keep you in my prayers.
joan, I feel like the queen of DENIAL, I also thought that my husband would grow old with me and just a have afew problems with ALZ. boy was i fooled , this last 2 weeks have been a nightmare . hospitalized twice and then placed ina psych unit in a hospital an hour away. to adjust his meds, they said. I carried him in walking and talking but very combatitive. now he doesn't know where he is . justs rambles ,but he is still walking for now. I almost cannot even feel anything now I feel so numb.I cry everynight. And yes I'm on happy pills myself but that doen't stop the hurt....
Dazed, the reason that most AD patients do not go through the end stages is that the majority of AD patients are fairly old, and something else takes them first. And often, that "something else" is gentle and/or quick. I suppose "outsiders" would find it strange to find comfort in that, but when I first read that in a book on early-stage AD, well, for the first time I had hope that this won't be as bad for my husband as it was for my mother.
Welcome to our family. There are so many wonderful, caring people here. The only downside to this group is the reason we are here. I also find wearing my professional cap is my first line of defense. I am currently a Vocational Rehabilitation Evaluator with a background in various areas of social services. As long as I can function in "professional mode", I do okay. It is when I have to take off that cap and be his wife and caretaker that I crumble. I am 51 and my DH is 52. He was diagnosed 20 months ago, but was symptomatic for about 2 1/2 years prior. He has maintained stage 4 since diagnosis and beginning Aricept & Namenda. Stay in touch. This is the most real and practical place to turn to for help.
m-mman, hi and welcome. It is so sad, how many of our family here have early-onset. So young to be struggling with this! I hope we're able to help you.
Denial, hope and second guessing myself is constant around here. Heck, just before I read this thread, I was mulling over the fact that I notice NO difference in DH behavior or abilities with or without meds. He refused to take them for the entire month of September. In October he began taking them again. No difference. Could it be that he really doesn't have this? Doesn't take long before real life lets me know otherwise.
My added welcome to all of you who've just joined us.
The fact is that nature's way of living is to impose a minimal amount of dying each day. our cells die and reproduce, hair follicles, teeth, skin, just about all of our body goes thru this process =if we look closely dying is an everyday part of living. we keep in the backs of our minds that we will grow old and then die of one of the countless ways- which in our minds at least mine, i can accept. but when AD smacks you in the face before we get to that oldage point- and tells you everyday your spouse is dying and you see it happening right before your eyes, you cant store it for the future to dwell on later -well, it becomes something more tragic having to stare it in the face each and every day and know its coming and at a rapid pace. plus the added misery of knowing how end stage alz ends is setting us up for more fears, so denial seems a justified mechanical/mental response to pain and suffering involved -divvi
I've gotten the "you are in denial" look lots of times over the course of this disease. The real answer is much deeper. Am I in denial - maybe a bit. However, around me he always did better and I also knew how to compensate and help him compensate for some of the difficulties. I did this automatically without thinking about it. Even now that he is in stage 7, he still often does better around me. Others who visit him tell me that they usually get little to no response from him. It is only very recently that I have had to struggle to get any response out of him.
I may be somewhat in denial but his behavoir when I am around is part of that. How others behave towards him makes a big difference in how he behaves back.
Is denial one of our defense mechanisms for something that we just can't comprehend? If it is, as long as we get there and noone gets hurt, what's wrong with a bit of denial now and then?
I think my DH is just the opposite. He is in stage 4, but I think he does better with others. I am struggling with why? Is it because he feels more comfortable around me that he doesn't have to "put on a show"...can just be himself? or Do I, or something I am doing, making it worse... bring it out more?...Am I agitating him and bringing it out? After we are with other people or attend events, he crashes very quickly...most of the time we don't even make it home (and we don't live in a large city) before he withdraws and falls asleep.
Have you seen the tee shirts that say 'Eat Right, Exercise and die anyway"? Lots of truth in that. Something's going to get us. AD is terminal but so is not having AD. Trying to enjoy each new day with what we still have.....
joang, it's amazing how so often since joining your forum I see topic's that are sooooooooo on point to what I have been feeling or should I say in this case what I have been feeling guilty about because I haven't been in denial....................................... Yes, I have felt guilty cause I don't feel any denial/hope, from the day of the diagnosis I have known what we are in for. Sure I want some miracle cure to come along, but I am a realist and figure it probably won't. And I feel awful most of the time cause I just don't expect a good outcome. It's like a post I read when I first joined, someone posted about a drug that may come out years from now that would stop AD in it's tracks, everyone who responded were so excited. I was like are you kidding? I love my Dh but I honestly don't think I would stop the disease where its at. I don't know if I have this straight forward attitude because of the struggles I saw my FIL go thru with his AD (Dh was diagnosed 3 weeks prior to FIL passing) or I am just lost without a caring bone in my body ( I don't think it's the latter). I just know that things have been so crazy for many years before the diagnosis that, as Stephanie K-G said the diagnosis was a relief. It was an answer to all the weirdness that had been going on, not a good answer but an answer. I have taken the approach that we will create the best years of this illness that we can, It's here, I will deal with it and give my Dh whatever time he has left to do the things he wants. We are both too young to sit and wait for it to overtake him, though it already has taken so much. I want him to enjoy what he can, so I have went so far out of my comfort zone to take him camping, fishing the things he has done all his life but adjusted to rv-ing near shopping LOL...... when we got married. But I always have this nagging guilt that I should hold out for hope, that I should fight harder. I just can't find it in me, not to say that at some point it won't appear it's just not here now. I commend all of you for having denial/hope. Rk
Rk I understand your post. I think the excitment over the new meds is a far-out hope they will help our loved one, but moreso that they will help wipe out this terrible disease for those who follow us in future generations. All Meds started out with trial and error and that is the best we can do.
Who knows, some small simple thing may be the answer. Those of us dealing with dementias gain comfort in any hint of improvement and for myself I feel better with holding out hope.
Denial? Hope? Not really. Maybe because I've already spent so many years dealing with my own slowly progressive neuromuscular disease and his broad spectrum learning disabilities and his Mental Illness, and now (since Dx Vascular Dementia in 2006), there is no denial. Hope is that this day, week, event goes well. I think all these years have enabled me to pretty much roll with what ever happens in our medical realm. What does trip me up is the unexpected events--his first UTI; braces requiring repairs; the huge jump in our gas budget plan. All the paperwork and agency contact requirements, the required reports; drag me down and make it harder to stay up and supportive for him. I have small wishes and short term goals. There is too much uncertainty to dream big at this time. Sounds like a downer, but it is my reality. We (both of us) will never go see our Daughter in California. Maybe, I might still be able to visit her in a year or 2? It's more likely we'll see her because she comes to visit.
No denial here. I take my hope in a shiny day; when he remembers the wedding I'm going to is Saturday; when he trusts my word that the Escrow problem with our Mortgage doesn't mean we have to move.
My biggest hope is that I can see him through this horrific maze that is Dementia and out the otherside where he will be whole and at peace. That will be our VICTORY. I have no intention of being denied.
I do find myself looking at him when he is reading and wondering if I am making all of this up - forget that it is on the petscan. I think he won't decompensate, he won't have toileting issues - that he will die of his heart condition first, etc..........
When my husband had his evaluation with the neurologist, I had her do the exact same tests on me because I wasn't sure who was the patient - the tests told us. I am so glad that I did that. We all forget things at this age so she was able to have the tests for me justified by the time I (or at least I think) I left the kitchen stove on and the firemen had to come and we had to go to a motel.
Carosi you said it so well "I take my hope in a shiny day."
I am not as articulate as many of you so I lifted a comment from the Mayo Clinic site re acceptance and denial. It is geared toward the person dying but translates well to the emotions I am going through because a piece of me is dying as well.
"Many theories on grief include the notion of acceptance as the most desirable outcome of a grief process. A better description might be accommodation — learning to live as fully as possible, while accommodating to the presence of this terminal illness in your life. But do you have to accept that you have a terminal illness? Do you have to accept that you're going to die before you thought you would? No, you don't."
Denial is an important coping mechanism and has been described as a form of terror management. We deny because the reality is too frightening, too overwhelming or too much of a threat to our sense of control. Denial is a form of natural protection that allows us to let reality in bit by bit. It allows us to continue living as we contemplate death."
My husband had a fall from the top of a building 8 1/2 years ago and I always went back to that as when his memory problems and other problems started. Denial - I must have been the mother of all denials!! Now that he is in the last stage of alzheimers, the doctors think the fall actually masked what was already going on. So he's probably been sick close to 10 years. And yes, I do admit, he does indeed have alzheimers.
As usual, the timing of this subject strikes a chord with me. Denial. Not for 1/2 second. With how long it took to find a Dr. to listen and pay attention to my wife's functioning, I had time to do enough research to conclude she had ALZ and accept it for what it is. It continues to be the anger with the Medical providers that I have to deal with, not denial. And, like all of you, spending a boat load of time thinking about what our future was "supposed" to be like. So, today I'm driving to work thinking through the usual frustrations from the night before at home and started wondering how long this was going to last. Obviously, none of us know the answer to that one. Then I got to thinking about what if something else happened to her first before she got to the end stages (NOT INFERRING IN ANY WAY I WAS THINKING OF HELPING IT ALONG) when I remembered she was diagnosed with breast cancer in late 2003 and obviously survived that. I then remembered the many conversations we had years ago about how neither of us would want to live in a veg. state. That recollection led me to think she would have been lucky to have succumbed to the cancer 5 years ago than have to go through this. When I started having those thoughts I got to really feeling like a bad guy so decided to start thinking about work instead.
m-mman, let me join the others in saying welcome to the party. You will find support and knowledge here that Dr.s can't even provide - I'm easily convinced of that. I'm 54, wife 52 ....... and I'm preparing for a long road. Thenneck
In nursing school you learn to develop care plans for every disease imaginable. For almost all of them comes the reflexive intervention to; "refer patient and their family to a support group". Intectually I knew that a support group would be of value (just because misery loves company) but I never REALLY understood what comes from participating in one. (BTW -thank you internet! I could NEVER find time to attend an in-person group)
This topic of 'taking charge of your life and how it will end' is a process I have been working with since 'the diagnosis'. I have no idea what I will do when the time actually comes, but there IS EMPOWERMENT in knowing that person(s) can play a role in all aspects of their life including the end.
I had the honor of being able to participate in the relief efforts at the WTC after 9/11 and learned some lessons. There were essentially just two deaths availabe to the top floor building occupants that day. Stay where you are and be squished after leaving everything up to the fates OR take charge of the manner of your own death and jump.
There has been critisim of the jumpers but they did prove that they were going to remain in complete control of their own body and destiny up to the very end. (As an FYI all the WTC deaths were ruled homicide. Families were NOT told any details unless they specifically asked)
Vegative state? never! As nurses we have discussed it many, many times. The hell with quantity, quality is all that matters. Medical science has performed many miracles but it has also given us just as many miseries. Death is not always the enemy.
At age 90 grandmother had a crystal clear mind and walked to the store weekly. The "big 9-0" hit her hard. I knew she was finished and wanted it all to be over, but she had no physical problems. So she started 'willing' herself into ill health. Her son & DIL (my parents) were clueless. So, I managed her treatments (and lack thereof) kept her as active as possible, while I navigated her through home care, assisted living, SNF and finally death 2 years later. It was beautiful really, but it was also only for 2 years. . . . Now I am looking at 20. . . . ?
Support groups? Now I finally get it! A place where you can say things you have never said to anybody about things that are tough to describe and have others say 'been there done that, let me tell you what is next' .
Thanks, Look like I found some new friends, may the learning continue.
Joan, this topic is near and dear to my heart. When you first started this site we traded an email and I wondered to myself if you ever thought about what would likely someday come your way. I had that thought because at the time my wife was in a rapid state of decline after three years of slowly going down hill with only moderate impact on our life together. All of the comments on this thread are important and I hope everyone reads them.
Last December I gave up and moved my wife into a nursing home. I moved her across the country so as to be near my family—we didn't have anyone where we were living. Since then I have sold a house, bought a house, moved our stuff, spent countless hours in the nursing home trying to make sure they do the job they are supposed to do, spent thousands of dollars on the nursing home, spent money on a lawyer planning for the day when I run out of money (Wall Street is sure speeding that up), and cried a million tears because I want her with me and not in the nursing home. I may or may not have been in denial but I sure underestimated how rapidly things could change. Her neurologist said that a rapid decline like she had isn't the norm but does happen in about ten percent of AD patients. Thankfully, she has been pretty stable for 4-5 months now.
She turned 74 this week and is mostly healthy. Arthritis seems to be the cause of most of her discomfort and she takes medication for that. We are also currently fighting a UTI. I did OK the flu shot but not the pneumonia shot. I do not want her to die from AD so her comfort is my focus for preventive care decisions.
Life without her is so hollow. At least when I was doing the hands-on care there was a certain closeness. I realize that her care needs now are too great for home care but “supervising” her care and trying to get others to do a good job is a never ending job that is incredibly stressful. At least when I did a good job tending to her I had the satisfaction of a job well done. Being around family is of some value but I don't really have a life. But, I MUST cling to life and to health because she needs me to watch out for her. Perhaps like, carewife, I'll eventually be able to think about a life without her? At least I'm finally back on-line and can read your blogs. Keep up the good work.
Perhaps. When I first came here I read tons and tons of threads. The two that still haunt me is the one I believe from sandy, about her husband being able to do nothing, lying in the fetal position for 3 years..... and the other I can't remember who wrote, and I never want to go back and look for it either.. it is forever etched in my mind. His wife could say one word, and she said it over and over and over..... HELP!!!!
Oh hell no!! I do not want this for Lynn. Selfishly, I don't want to witness it either. I think it could just about kill me. And this, is where the denial comes in. Lynn is in stage 6, but he does still talk well, and can still shuffle well too. Though he only weighs 115 now, I keep thinking, praying, hoping...... it wont get any worse. I am not in denial. I know it can and most likely will happen. But, unlike some, I beg God for as many years with him as I can have.
The little things in the beginning and mid stages, they are little things compared to where we are now... seem so long ago. I often look back now and wonder how those things could have bothered me so much, with all I am facing now.. with all I have yet to face. Most would consider him a royal pain in the butt, but I treasure our time. He still knows me. He still loves me. He can still put voice to that love, and I am hugged many times each and every day. To me, that IS quality of life. To love, and know you are loved. I agree with the others, I am not in denial... in that I do KNOW what is to come..... I just can't give up hope. This from the lady who ordered a case of coconut oil *wink
Not only hope, but the willingness and the courage to fight, Nikki.
Denial is refusing to acknowledge reality. Fighting is acknowledging reality as it currently stands, and doing everything in your power to change it to a new reality.
That fall may indeed have been what started your husband's problems -- trauma to the head/brain can cause dementia. (We were talking about this over on "the other site"... quite recently, too.)
Have you posted to our threads on the ages of caregivers and spouses? Kadee is keeping running tabs, it's very interesting. And if you're comfortable telling us where you live, the "Where are you from?" thread is fun.
Let us know what we can do for you.
oldbiker, it's good to see you posting again. It's been a long time!
When I first saw signs of Alzheimer's in DH I started reading all I could find. Some books were so depressing I put them down. When I saw workshops for caregivers being given, I did not realize that was for me. It took a while to realize we were on the long road down. I went through denial: I am probably still doing it. Denial is a coping mechanism. I am sure it is better not to look to far down the road. I read some where that most of the things we fear never come to pass. Maybe they do but for now I will get all the information I can take in, let the rest wait and live one day at a time.
Sunshyne, Thank you. sniff sniff..... fighting... yes that is the perfect word for it. My family and a couple of friends call me a warrior. Aren't we all !!! I can't give up, I HAVE to fight, even if it is to be a losing battle. In the end, I need to know, I gave my all. Lynn would do nothing less for me.
On a lighter note, My plate is over full..and my family always worries about me. Drives me nuts! But, in a good way. Most offer advice etc, but I have one brother who uses humor to tackle life. I love it! I talked with him the other day, and he said to me, "Nik, stop fighting crazy, it's not a bad place to be!" LOL, I am STILL cracking up. Ahhh humor, it keeps us sane :)