In today's blog, I wrote about "Acceptance". I think I have accepted our situation and am doing the best I can to live with it, but other's don't see that in me. I am putting the question here - Have you accepted the situation - the change in your spouse and your relationship? If so, how have you done it? joang
I don't know what your friends who thought you hadn't achieved "acceptance" were observing, but the whole concept that there's a point at which we now "accept" seems nebulous at best. If forced to define it, I guess I'd say it's a state in which we find that we're able to be who we need to be vis-a-vis our spouses--MOST OF THE TIME, and we've found that there are things in life--apart from the sad reality of an ill spouse--that we enjoy, and that make live fulfilling--MOST OF THE TIME. I would also suggest that achieving such a state puts us on a bit of a wobbly line, like a biorhythm, on which we have our cycles of being below the baseline as well as those above. One never "gets over" something like this, or loses the potential to have the sad layer pop to the surface at unexpected times...but I guess it's the ability to live with this state of affairs while maintaining a healthy measure of "being okay with life" which equals acceptance.
I like to think that I have accepted what is coming, except......I wonder if during the good days, I let myself believe that perhaps the good days will stay. We have had over 3 good months, good for us, not for normal people. When we recently had a few bad days, I seemed to get down and anxious very quickly. So, perhaps I have not reached a state of acceptance yet.
Well, see...there's the problem. We have to keep accepting new levels as things inevitably progress in a downward direction. I'm kind of in denial about the inevitability of that as well. Jeff has more-or-less plateaued for some time, so it's easy to think that he's somehow different--maybe he doesn't "quite" have AD--and it'll just stay like it is now.
Emily said something that hit a cord with me - "to have the sad layer pop to the surface at unexpected times"...I really do think I have "accepted" our situation. Or maybe I should say "adjusted" to it. But on Sunday, I was talking to a couple who I had just met (in the pool). The husband was still working, but wealthy enough to conduct his business from a laptop wherever he chose to be. He was telling me about their plans to travel all over the country in their RV (very high end, fancy RV, I might add) - all the beautiful places in this country they had seen and plan to see. It hit me then, for the first time - we'll never be able to do that. No more road trips for us. No more long trips to see places and sights we have yet to see. A sadness came over me that I had not allowed to surface in a long time. It's not as if we haven't traveled. Thank goodness, we made the decison when we were first married, to never put off traveling and enjoying life until we were retired, because who knew what would be then, or if we would even be alive. So we traveled; we crusied; we went so many places together - even when we couldn't afford it, we went. I am so grateful for that, because now, between the diabetes and the Alzheiemer's, our traveling will be extremely limited. But at that moment, talking to that man, that was the unexpected time when the sad layer popped to the surface. So I still think I have "accepted" or "adjusted", as best I can. In spite of what I look like to others. joang
That happens to me any time I go--for example--to my daughter's cross-country meets, and there are dads there who are vital and know what the heck's going on...taking pics, etc. I think, "that's just so darn attractive...a guy who knows what's going on." Then you have to kind of re-calibrate yourself back into that place of acceptance.
I think I feel more sad after reading your postings. Gord never had interest in anything other than what he wanted to do. We never travelled (other than a trailer trip with my sister and brother-in-law 40 years ago), he wouldn't go to shows, he wouldn't go into restaurants. The kids had any McDonalds meals sitting in the car even in the dead of winter. He didn't have a great interest in his children nor did he in his first grandchild. I guess this lack of interest continued right on into AD. I guess I will go and vacuum because I feel like crying.
Jan, What do YOU like to do? You accepted your life the way it was; you seem to have accepted your life with AD. Well, now is the time to cultivate interests of your own. When you have the chance, when your husband can stay alone (if he can stay alone) or is in Day Care (if he is in Day Care) or you can just get someone to watch him, or when he's sleeping, find an activity YOU enjoy and pursue it. I subscribe to a magazine called MORE. It is for and about women over 40. In my case, waaay over 40. It is a magazine of hope and promise - stories about women who achieved goals they never thought possible when they were in their 50's, 60's, 70's, and even 80's. It is inspiring. joang
I'm not sure if I've accepted this. I'm not in denial - both my husband and I openly talk about his AD. I try not to think to far into the future. For the most part I've got the finances figured out but am overwelmed when I think about the ending to this story. My 18 year old son suggested I start talking to his minister friend's wife who has counseled others in the past. He feels it will help me through this. Is anyone currently going to going to a counsler on a regular basis and has it helped?
Jan- what you need is a break possibly someone to stay with your husband so you can have a day to yourself. Forget the vacuuming!
Good idea Trish. I son, his wife and our granddaughter came from Japan to live so they could have some good times with Gord before the inevitable;however, I find that Tim has had very little time to spend with his dad due to working and trying to keep his wife happy about her enormous transition to a new country and culture.
On the topic of counselling, our GP referred me to a psychiatrist when I cried through an entire visit due to his bullying and belligerence. I have had one visit which showed me that one has to be careful what words you use and have another one this Friday. I will let you know if it is any help.
I think we accept the stage we're in. When they progress to the next stage, we have to learn to adapt and accept that as well. I think accepting the illness is learning to live with it. Getting past the grief of what was and being comfortable with what is. I don't think we have to like/love it.
I find myself getting sad at weird times. I'll think I'm ok and then see a commercial with a dad and son fishing or playing ball and then it all comes back. I watched the Biggest Loser last night - that seemed like a safe show. Ok, one of the guys asked one of the girls to marry him. Can't we even have one TV show without all the romance stuff?!
I don't know what acceptance looks like. There's so much about this disease that is just incredibly hard to take.
I think for me it's resignation rather than acceptance. I have to learn to live with the new reality but as to accepting it, I don't know whether that will ever come. Inge
After reading the posts about this, and thinking about it some more, I guess the word is "adjust" rather than "accept". I don't think I'll ever "accept" the changes AD has brought to my relationship and life. I'll just "adjust " to whatever comes along next. I really don't have any other choice in that regard.
I don't know if I've accepted or adjusted. I think I've accepted. I don't like what's happening but I've accepted it. Bill was diagnosed almost ten years ago, maybe longer, I can't remember. When we would go shopping of for a walk, I use to walk as usual and he would lag behind. Now I hold his hand and we both creep along. It takes longer to do things but I know he's doing the best he can. That's accepting, isn't it? I don't get as angry as I did at first because I know he isn't doing things on purpose.
I've found that the worse Bill gets, the easier it is for me to accept that he is just not able to do what he use to do. He has now gone into the Depends stage but it doesn't bother me as much as I thought it would. He will thank me for helping him when he has a problem.
I agree with Joyce. Is it acceptance or adjusting? I am not sure if I will ever fully accept the diagnoses, but have learned to live with it most of the time. Maybe that is acceptance. I think I am doing fine and something happens that shows me just how much he has failed in the last few month. It doesn't take much to throw me for a loop. My daughter was here for 10 days and left yesterday. It was hard on both of us and today has been a lonely day without her. Even Ralph said yesterday that he missed her. Acceptance is something I have to work on every day. Does it make it easier?
Jan, didn't you ever demand to do what you wanted? You have been married to a man who has never participated in much vis-a-vis the family, haven't you? When will you stop beating yourself up...& get out there and LIVE? There have to be solutions to this isolation. Pay someone to give you some time off. Get on the internet and find a women-only travel group & go somewhere, have fun...come home...then do it again if you like it. Then you won't be so mad and disappointed...you will just be planning your next outing!! I think the most awful thing about this entire ordeal for any of us is to be imprisoned. It's the same reason we need vacations from our jobs...and even God set aside 1 day to rest. You sound like a lovely woman, I wish you the best.
Acceptance or adjustment???? Well I find myself just plain NUMB most of the time. I hate the way I find myself tuning him out when he is just rambling on about something I have heard for the millionth time. Tell me I'm not the only one who does this.....
You are absolutely NOT the only one. It happens to all of us all of the time. Tuning out? Why didn't I think of that? I tell him - yes, you've told me that a million times already. That annoys both of us.
What I am finding so sad is that in my "adjustment", this new life has become my reality. The old one is fading from memory, as I have "adjusted" to this one. I know I can't fight to keep the old one, but I miss it. joang
Joang I have listen to people say remember how he was and all the things you did together, but like you the old life is becoming a pale memory. I remember the fun things we did but I really can't remember the way Bill use to be. If that makes sense. I, too. miss the old life.
Hi Marsha, For the first 25 years, I just believed that if Gord didn't love me, there was nobody out there who would. Therefore, I had to do everything to make sure that he continued to love me. Finally, I got a little smarter bit by bit and insisted on doing things. I even went to Japan all by myself to see our son get married...my flight was Sept 13, 2001( needless to say, the flight had to be changed to Sept 18,2001) and I had never flown before or had a passport. I felt so grownup marching through the airport with my wheelie suitcase. When people talk about what they will do after AD, I will not look for another man. I will do what I want to do.
My husband of 40 years is now in a nursing home in the end stages of AD. I have adjusted to the reality of the situation, but I do not ACCEPT this horrible disease. I urge anyone who still has their spouse at home to avail themselves of day care or a home health aide, if financially possible. This will give you some respite from the caregiving, your anger and distress. I also cannot emphasize strongly enough to seek out a support group if there is one in your area. There is nothing like talking to people who are going thru the same situations because they know EXACTLY how you feel and the empathy is wonderful. Lastly, speaking to a counselor, or clergyperson, social worker, psychologist or psychiatrist can be very helpful. AD brings out so many emotions besides anger. I find that the most prevalent emotion is one of overwhelming sadness, not just for what is the current reality, but mostly for what might have been or should have been at this time in our lives: relaxation, travel, grandchildren. I am remaking my life over as a single person, but its not anything I anticipated at this stage of my life. Diane
Resignation is my state of emotion now...I sometimes think I have "accepted" our life now but then I see couples who are enjoying their golden years and I vent again against my lover's and my existence
My resignation has come after years of trying to hold on to my husband's person still seeing him as the one he was.....I finally now realize the person he was is gone and he is now a much loved stranger. I am resigned to this life of grief and loss but never will accept it.
I said a few days ago that I thought I had accepted this disease. I am wrong. I realized yesterday that when Gord says strange things, my heart still races and my stomach clenches. I am still trying to believe that he is normal and that these comments and questions are going to go away.
I also said I have accepted it but maybe you are more correcte carewife. I haven't accepted and much as resigned to it. Bill has been gone for years as the man I married 45 years ago. Like you said he is now a much loved stranger and there are times I'm not sure of the loved part. I hate what has happened to him.
After rereading, I now question what is acceptance? Isn't it when you know things are not going to change and there's nothing you can do to change it. Isn't that acceptance. Maybe I have accepted, but there is no way in the world that I will ever like it.
To me acceptance means just being aware of our reality. I think there are several stages to acceptance; from resignation, to not liking it, to being ok with it, and, as strange as it sounds, joy. Most of my time is spent in the resignation stage, I look at this horrible disease as something that is slowly destroying my wife, and I struggle not to go there with her. But there is nothing I can do to cure this disease, the only thing I know to do is be physically with her, yet try to retain my own sanity. It's written to take up our cross and follow, I believe love is the cross we bear, that perspective helps me be ok with her AD. (sometimes) The only time I seem to have joy in my life is on those days she is having a good day. A friend of mine - who is not affected by this disease - told me the quality of my day should not depend on someone else. A great point of view, but hard for me to live by. Though I do try. So I guess I do accept it, even though I do not like it. I just found you guys today, thanks for your honesty.
I want to welcome you to my website. We all understand what you are going through. If you read the messages above this one, I think what most of us have come to is "adjustment". We adjust to every new phase of the disease, but no, we don't like it. We miss the spouses we had, but there is nothing we can do but try to make the best of the new relationship. If you click on the left side of the website, where it says "previous blogs", I am sure you will find topics with which you can relate.
Even though your friend can't possibly understand your plight, he does have a point. Try to make time for yourself to be with friends or work on a hobby.
Acceptance? Yes, Lonelyone, it is being aware of our reality, but reality has a way of changing... sometimes very quickly. I was at acceptance a few months ago, I guess. But now it seems things have changed and my DH has deteriorated all of a sudden. He really won't shower, hasn't shaved is 2 weeks. He sleeps even more than he used to... now it seems like 20 hours out of 24. No conversation, he can't follow a thread. He can't follow a TV show. And at this point I am not in acceptance, I'm adjusting to these changes, and I keep hoping he'll come back to where he was even in August, but it's not going to happen, and I miss him. Maybe more than anything, I miss him. We traveled a lot, and I am so grateful that when he was 68, and wanted to retire, I left my job, even though I was only 48. I wouldn't have given up those years. Now he's 84 and suddenly he looks 84, and 'acts' 84 and I need to accept this. It takes a lot of work, and patience, and prayer.
I haven't 'accepted" the AD. If I had I wouldn't keep thinking some new miracle cure might pop up any day and we could go back to where we were.
I have adjusted to the fact we are no longer going to go on vacations, go to shows, I will have to do any gardening that is done, he no longer tries to tell me I am doing something wrong or I should do it another way, but there is still a part of me holding out a trace of hope for a miracle cure.
The last week he has improved significantly and I am almost afraid to comment on it for fear it will dissapear.
Joyce..."I've found that the worse Bill gets, the easier it is for me to accept that he is just not able to do what he use to do."----This is exactly how I feel. Now that my DH is so far away from where he was and so clearly unable to do anything on his own, I find I have more patience and definitely more sadness for him. When we're out, it is obvious that he is impaired so I know that people will not expect him to do normal things. I now feel that I want to make whatever time he has left as happy as it can be for him.
As a newcomer, I deeply appreciate the honesty of all your input. After reading through your comments suddenly I don't have that sinking feeling of discouragement because you zero'd in on the basis of my depression. I am able to think about the good things I did accomplish in the management of this disease and the good people I have surrounded myself with. Thanks to each one of you.
I thought unless something else - like a heart attack or a stroke happened - AD always was that long good-bye. It was just a little over two months ago that Hank became ill and now he has been gone over three weeks. When I called the AD 800 number and also emailed his AD doctor I was told in some cases it can go that fast. Even though it was wasn't want I wanted, I THOUGHT it would be many more years of at least having the body of my DH. I don't know if it is any harder to accept when it happens this way, but there are times of incredible sadness. I'm not sure how much I can trust myself when I'm in the public to put that part of me away for a time. Interesting that I decided to get an appointment with a social worker. The first session he suggested I come back. The second session he thought I was doing so much better that I didn't need to come back. I wonder why it feels about the same to me? Still, this social worker mostly helps with those returning from wars, and a young fellow with a cane and surgery in his future was there - somehow I felt guilty that I was using up time of someone who was so needed by these young injured soldiers.
frand-you were not wasting the social worker's time. You lost as much as anyone could. I'm not there yet but I have been told by others that they thought they were done grieving but when their loved one died it still shocked them. There is nothing more final than death.
Thanks, bluedaze - I guess seeing that young man with the cane made me realize everyone had something to deal with and that all of us also have parts of our life that worked out well...even as we grieve for those that haven't...
Fran, I continue to think of you and am glad you are with us. I have no doubt when Lynn's time comes, a different- permanent grieving will begin. You are an inspiration to us. Keep sharing, perhaps we can help you, as much as you help us.
The Long Goodbye, I think is what we are all expecting. I can imagine that you suffered the shock of an unexpected death, as well as the grief. You are in our thoughts and prayers. Give yourself time. God Bless
I don't know if I will ever accept this is my life at 58 years old. I do know that I have been able to adjust to doing everything from yard work to buying a new car on my own. Also, have adjusted to the fact that he will never write his name, remember his birthdate, address, phone number or even how to count his beloved golf clubs ( he takes them in & out of the golf bag constantly) I have adjusted to the fact everything that he could do last summer, he can't do this summer. I guess next summer I will be saying the same thing. I have not accepted this disease, just adjusted.
Our son had a stroke at 9 days. When he was 10 mos old I was told all the bad stuff in very plain direct statements. I couldn't accept that he would probably not walk until he was 8 years old (he walked unaided at 19 mos.) that he would never talk (he never shuts up), that he would be blind in one eye, deaf in one ear, and probably never be able to learn. He could read at age 4, his vision is 20/20 in one eye and 20/40 in the other. He has no hearing problems. I could not accept their original diagnosis. I guess I kept atjusting as he improved.
My DH has AD. I guess i'm not accepting that either. He may never get better. But perhaps he wont get really bad as quickly as he might. I have adjusted to the fact that he can't mow the lawn, go golfing, follow a movie from start to finish, etc. He still has a quality of life so I will adjust to what we have together and hope for the best. Am I rambling. I'm going to stop now because I'm not sure what I'm trying to say and I don't want to say something wrong.
Mawzy, I understand what you are trying to say. And you aren't rambling.
At this point those of us who have been here for several months have been here for several deaths. No two alike. One real long goodby. Several real sudden ones. And a few that were in-between. So between now and whenever then is, I'm with you. I'll help him have whatever quality of life we can manage and hope for the best.
Acceptance..... yes. It wasn't easy, and I don't wish for it. But, without it... I would still be in a daily painful hell. It still hurts, but it isn't consuming me any more. This certainly wasn't where I pictured myself at 41 either. But, I had to come to a place of acceptance in order to survive.
We were fortunate to be able to see the head of Neurology and Psychiatry at St, Louis University. After a two and a half hour interview, he made the diagnosis of "probably Alzheimer's with a general anxiety disorder". Anxiety is under control with Lexapro. I was pretty confident of the diagnosis, but still had hope that he was either wrong or something magical would happen to undo AD. I'm not much of an optimist, but there was still hope and a quasi-acceptance. Last June we were contacted about the Elan/Wyeth drug trial. This is it, I thought. Acceptance for me came when she got an 11 on the MMSE. Too far gone to participate in an experimental drug trial. It was sort of a relief. The requirements of the trial, (travel, infusions, MRI, time at a hospital) were going to be pretty tough on the both of us. The whole day sort of defined "what is, is. deal with it".
Since this topic is -"Acceptance", I am moving all of the posts concerning the Mini-mental and neuropsych testing to a new discussion labeled - Testing Information - Mini-mental and Neuropsych. Please post all questions and comments about cognitive testing under that discussion. Thank you.
I feel that I reached acceptance when I no longer got angry at my husband for not being the man he was. When I quit trying to explain things he couldn't understand, ask questions he couldn't answer, hope he could do things he couldn't do. When I entered his world rather than trying to coax him into mine. Things got easier then. I quit asking "why us???" and started saying "Why NOT us?"
Accepting that AD has entered our life and nothing will ever be the same, now or in the future, was a tremendous task for me to overcome. I fought it tooth and nail for years as many of you see there were many days i thought maybe the diagnosis was a mistake and he would improve. the slow declining cognitive abilities over the years even with the AD meds finally forced me to accept that AD will win in the end. Once you have come to the acceptance stage things seem to be much less hectic, like a calm before the storm is what comes to mind, the storm being the end stage and death. As hard as i fought my own relentless ideas that AD would not claim by DH i finally forced myself to acknowledge the fact that there is no winning this battle. i am a fighter at heart and this took its toll both mentally and physically. thus the word 'acceptance' for me during this journey is knowing i have no real control over any of it and have to accept what fate deals us. divvi
last night in bed we saw some news that had happened in a town my husband but not me, had lived in. He said to me, wow, we could have just walked out our door and been involved. I answered that I had never lived there. I shouldn't have said that, I should just have said yes. He got all upset and sad because he's always wrong about everything, and on and on. Shut my mouth... why do I correct him. I'm still not accepting, or I guess even resigned, I'm still fighting it, and I want him to REMEMBER. Well, it's not going to happen, so I'd better just learn to say yes, and not upset him. It's just not in my nature, and it's so hard to let the moment pass. When I learn to do that, I'll be where I need to be, for the little bit of happiness he has left.
chris, That was & is one of the hardest parts of this disease. Before I came to this board I corrected my husband all the time, which in turn always prompted a bad mood. I have finally realized from others that it is better to say okay or nothing. It is still very hard & I sometimes slip up, however, I am trying very hard. When I have no clue what he is talking about I just say "Oh really" Seems to satisfy him.
I'm right there with you on this. I'm trying to awknowledge the positive things...helping around the house, walking the pup, etc...and ignore the negative, but sometimes it just slips out. G will then say with a definite edge to the tone "Tell me when I do something right, will you?" Bite the tongue time.