It's after midnight, so I guess that's morning. I'm not tired yet, which is why I decided to post my blog before I went to bed. I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog about acceptance, and post your own experiences and comments here.
It isn't only the death of a part of our spouses, it is the death of the marriage and the dream. It wasn't supposed end this way. How do you accept death when the body is still here?
Joan, same here. I've been accepting in increments also but I'm always behind, never current so I accept that which has happened and I've learned to deal with but each new symptom like you said comes as a huge shock and I realize maybe I haven't reached acceptance at all. I do have this belief that ACCEPTANCE is the key to a greater sense of peace and well being, but still....not there yet. Thank you for putting it into words.
Joan, You would not be able to cope with the disease process if the changes and acceptance did not happen gradual. If the changes Sid has were not gradual and thrown upon you all at one time it would be so overwhelming no one could cope. I think the gradual way the disease declines is the only way we could begin to accept.
We have now been on this journey 9 years, we will begin the 10th year this November and I am still in the process of accepting. Your acceptance will be as gradual as the disease, I really don't think we ever totally accept that this has happened, just that we accept that we cannot change things and that this is the part of life's cycle we are now in. Just remember that acceptance is very gradual and you will not even realize that it has happened until it does.
To paraphrase what I just posted in another thread--I've had 6 years since things really started to go amiss to process the gradual loss, and create emotional planes on which I can live, where life is ok. The heartbreak surfaces, without a doubt, but I'm no longer "living the heartbreak" as my default plane.
A lot of it comes from a gradual shift in where you draw your personal satisfaction from. I loved my marriage. It really was a satisfying best-friend situation, and there will always always be an ache there, but I'm definitely not looking there for any sort of emotional sustenance now. That comes from other family, my avocation, and myself. It feels kind of selfish in a way, sometimes, because I have established emotional barriers so that I don't feel a "direct feed" from the tragedy of the relationship loss at all times. But it's the sort of wall or boundary you have to build.
Joan, I am with you. I am accepting in increments. Sadly, sometimes I go backwards. In many ways, I am still trying to fix his memory. I think that the things they forget are so unbelievable that accepting is an Herculean effort.
Joan, The process you have described sounds totally normal to me (of course I'd say that, it's similar to my reaction)! As Jane said, if it all happened at once, the caregiver would just crash too. This way is the only way I can imagine coping with it--however, the continual decline is torture. I think I've accepted that my role is to give him the best life he can have, for the rest of the way, and to try to save myself from drowning along with him.
Joan, I too am accepting in increments, but very small increments. Actually reading on this site has helped that some, because I really have tried to "FIX" everything, talking to DH about the problems we're facing, and living in complete denial. Now, I guess the anger, confusion, and depression over the situation actually means I am beginning to accept it as it is. I do have frequent "pity parties", because as all of you feel, we have been robbed of what should have been a very nice, calm, enjoyable part of our lives, and now after all the hard years I have already managed to get through, I face....well who knows how many more years of hardship. Very hard to accept, and I'm still working on it. Thank goodness this helps!
My journey started in spring 2007. My husband essentially has been gone quite awhile. His body is there, but, depending on the topic/task he is between age 2 (logic) and age 10-12 (tasks). Fortunately he is on the '12' side for things that affect his staying home alone while I work full time. I feel for you all and understand the 'incremental'. I sometimes am surprised too, as lI was last weekend when we took 'one trip too many.' I can't say at what point I basically 'accepted'. I love my husband and think he is 'somewhere in there' but basically have succeeded in (mostly) accomplishing the 'emotional divorce.' This probably was easier for me because I spent 25+ years in another marriage where I was emotionally on my own and physically had to do most of the household tasks too while raising 5 children and working 60-80 hr a wk. Great practice for this situation. Another thing that makes things easier is that the neurologist, my DH and myself all think my DH won't live longer than another 2-3 yr tops. That's about 5 yr total. My heart goes out to those who deal with this longer. I have become more patient through this whole thing, so guess that's a good thing. And I've met TONS of wonderful people through this experience.
Yesterday I heard that our city's beloved baseball annoncer Ernie Harwell has terminal cancer. I was blown away by the grace and dignity with wich he is accepting this up to dealing with the pain and dying. I must learn to accept DH's condition and work with it instead of around it. It is what it is and I am making myself sick trying to deny it. God bless all the spouses here and want to thank all. I want to be able to do something to help others. Does anyone feel the same? Gypsy
Comment Author emily Comment Time 6 hours ago edit delete
The acceptance part, like the grieving part, goes in steps and plateaus with this disease process. For us, things seriously started to go amiss 6 years ago, so--I've had my better times and my worse times--but enough time to work out an emotional position I can live with. The heartbreak certainly surfaces at times, but on a day-to-day basis I've established emotional layers where I can live while making things other than the tragedy my focal points. It's amazing how long it can take to do that.
Comment Author Zibby Comment Time 4 hours ago edit delete
We've been going down this slope for many years (in retrospect); so I've gradually taken on more of the "business" of our marriage which was never a "soulmate" relationship. I've also worked out the day-to-day stuff; so usually it's okay. I just do what I have to do. Yesterday was another jolt before thinking, "Okay, another few cells gone." He looked out the window and said, "I see a horse over there." "Yes, it's Skye." I've never seen it there before." Skye is our granddaughter's horse in a pasture next to a grove of trees on our property, and Skye has lived there the entire 5 years we've lived here. He's seen and commented on how nice Skye looks when he runs in the pasture. And so I continue my "mantra" Whatever will be will be.
One line in the sand was calling the police when he tried to kill me. It was the ONLY violent episode, but once I decided I was going to live, that was pretty much that.
Another was reading the Tough Choices book online and making all of those tough choices WAY in advance. And really meaning it when we did the Medical Directives.
I still feel affection for him, but he isn't really my husband anymore. I'll take care of him (at home or in a facility) until he dies, but I've already decided there is going to be a life after and I'm going to survive this.
I remember 'till death do us part' and I believed that. But what happens when both partners are alive and the marriage has died? Is it still a marriage when two warm bodies lie in the same bed, eat at the same table, watch the same TV, but only one is fully functioning cognitively? And, on top of that, doing everything that both used to do together, even to the point of thinking for the other. I used to call myself a 'married widow.' Accepting the disease, odd and often dangerous, threatening behavior is one thing. I know some still feel married, but for others, the marriage has died. Sad for everyone. But love him, protect and care for him--that I would always do.
I did accept it right from the beginning, because I KNEW there was a major problem. Even easier, for me, was the fact that DH accepted it also, right from the beginning. No denials, no tantrums - just acceptance. He still says he's not going to give up though and let it get the best of him! And he tries so very hard. As the journey progresses, however, there are very different things we learn to accept - or not. I try everyday to accept whatever is new with him and deal with it as best I can.
I have accepted the part that he can not be "fixed". I know that and have quit searching the internet and running to doctors for answers, but I have not quite got to the point where I can be emotionally detached, in fact I don't think I will ever reach that state and I know that I will suffer because of it but I love him and I hate seeing him like this and I always will.
I am new on this journey since my DH was diagnosed one year ago. I spent the first 6 months looking for a magic bullet (drug trials, new doctors, new tests, etc). I know that there is no magic bullet and am starting the emotional detachment that seems necessary to maintain any sanity and strength. I guess that accepting this disease and outcome is starting to dawn on me now. It is so incredibly sad.....
Janet, I'm not Nancy but everybody is different and though we may "hold hands" we must all walk alone. There is no glory in staying till the "end" and no shame in "giving up" near the beginning or anywhere along the path. Nobody here judges what another does. We all must find what is right for us and our spice.
We've been battling AD for six years and not a day goes by that I don't say to myself "I just can't believe I'm helping my husband wipe his butt, or brush his teeth or or or........"
Our culture is so focused on progress and fixing things that I find it very hard to wrap my mind around the idea that nothing my husband or I can do will significantly change the course of his illness. At the moment I am deep in house renovations that involve making a wheelchair-ready separate space for him, so that feels like something I can do.
I wrote a proposal to give a paper in the spring at a conference on "Gender, Bodies and Technology." I want to talk about how we think technology will fix things but instead it just traps us. Marx said "religion is the opium of the people" but I think today it is technology.
You're right Pam. I think it is to an extent. As for doing something productive because it "feels like something you can do." Sometimes that's all you can do. Sounds stupid, but true. It's like "I'm going nuts, so I think I'll go run around the block 15 times."
Oh my, I'm afraid I've got a long way to go. I'm still frantically searching for something that will help and I'm nowhere near even starting to emotionally detach. I'm like Janet. I need to know how to do it.
I don't know how you do it, I just know I learned as self-preservation. Otherwise it would be like being plugged into the 24 hour All Heartbreak, All the Time channel, and I just had to tune into something else. Maybe it depends partly on the type of relationship you had, prior to onset. I'm sure it also has to do with caregiver personality types. I may be better at being insular than most. But what kept happening, for the first few years, would be that I'd TRY to be emotionally open to my husband--I mean, have the communication channels open that enabled us to communicate and coexist so well for 20 years--and the transmissions from his end were just usually dead. Not there. No reciprocation. So, gradually I developed a way of being there, being friendly, being attentive to his needs that didn't involve those old channels. It is almost the clinical side of my personality, in a way.
One of the tough things is, he knows our relationship is different too. Because he's not getting the same old close communion-of-friends thing from me, and he feels its absence. What he cannot understand is that, even if I broadcast, it's his receiver that's broken. IOW, it would be impossible for me to recreate our former relationship on my own power.
Yes, I'd truly rather be a real, all-the-way widow, then have to keep doing this for an indefinite number of years, but...there you go, we don't get to pick. So I use psychological pain-blocking techniques.
Emily, it may change. I could have written what you did a couple of years ago. Detatched, no relationship, just polite coping. But with the progression of the disease - and of his needing more help from me - he has gotten more and more comfortably loving and sweet. Caring for him - physically he's in chronically bad shape and mentally in about stage 5-6 - takes about 3- 4 hours a day. Otherwise I can do what I want around the house without bothering him. Though physically it's harder on me, mentally, it's a lot easier.
briegull, mostly I can do what I want too. But it is so hard to actually do much of anything except play on the computer and read books. And the actual work isn't all that much. He doesn't need me as much as briegull's husband needs her. Physically he does pretty well by himself.
He had a bad day yesterday, but is doing better today. It is what it is.
Vickie, my DH is and always has been like yours. I think HIS acceptance has helped mine. He is willing to keep doing what he can, so he hasn't given up. But we both try to enjoy what is left (hard sometimes to keep that focus) and live one day at a time.
Emily, I think I'm with you. My emotional detachment came earlier this year, when I did a lot of research and reading and developed the strategy known as Habilitation. But the acceptance has really always been there from the moment I had to admit to myself that he was changing. As Starling says, it is what it is. I have been sad but not angry or rebellious. I wouldn't make a good activist or revolutionary, I guess.
I don't think I will ever "accept" this awful illness. I sometimes am calm, and realize that this is what's happening to us now, but I am still so angry and sad, and don't want to accept it. I realize that these feelings are a waste of time and soo unhealthy for me, but right now that is how I feel...maybe tomorrow I will feel differently.I manage to go along and get through the days, take care of George and do what needs to be done, and sometimes we still interact and enjoy each other's company, and each of us loves the other, but it is so different now...I hate it and want things back the way they were before! I think I feel so angry lately because Sept. 24 will be our anniversary- 32 years--and only one of us remembers. The sadness of what our spouses and we go through is overwhelming, isn't it?
bella-- "The sadness of what our spouses and we go through is overwhelming, isn't it?" You are right. However, we cannot let it overwhelm us. It is huge, humongous, gigantic. If we aren't going to let it destroy us we have to be stronger, more flexible, resilient, caring, angry, stubborn, forgiving, nurturing, ...and more. We can be angry--at the disease and what it does. We can be sad for all we lose. But we have to accept that Dementia has moved in on us and we have to deal with it. I learned fast and hard when faced with DH's potential suicide. I was a walking basket case with no sleep for 2 days when first faced with the crisis, but I had to take care of him, keep the household running as normally as possible, apply for Disability for him, and raise our daughter. It was on me, so I had to get my act together. Once I faced the fact that until treatment was in effect, he was still a potential suicide, I sat down and figured out every single step for dealing with it, if he went through with it. I did this twice--once on the premise that I found him, and secondly, if our Daughter found him. Every step, finding, calling authorities, dealing with Medical, with funeral, arranging grief counseling and other counseling if needed. Every single step. You know, if you can face something that big and figure out how to handle it, anything less is not so hard to handle. At least with Dementia we field a lot of blows, but not all at once. We can hold on to the good parts of our lives for a while, not lose them all at once. And while it hurts to have Red Letter Days go bye unacknowleged by our LO's, we can stil celebrate them, because we do remember. We just celebrated our 35th Anniversary. A quiet day for him and a short respite trip for me. Brownies for dessert that night. We accomplished that. Dementia is an awful illness, but if we don't face it and accept it and then fight to get our LO's through it as well as possible,we waste our strength in anger and sadness, and it will win, destroying both of us. We have to accept it, so we can refocus on what is really important--what we still have--and keeping that as long as we can. I'm not throwing away all the good days we still have coming, by wasting them being angry and sad.
carosi--thanks. You are right; I know that...and I knew it before I said what I did. Guess I just needed to vent; we were having a bad day, but things are better now. I want to let you know how much I appreciate your sharing what you have gone through--you are very courageous and your strength inspires me.
I have totally accepted the inevitable. I have no choice, and I can't change the outcome. My concentration is to give her the very best and loving care I can until I can't any more. Then others will have to, and if I'm still here, and able, I will oversee their care of her. But the sadness of seeing her decline will always be, after all, she is the girl I have loved for 46 years, and continue to love no matter what happens. Accepting is not giving up, but rather knowing you can't stop what is going to happen, and not feeling guilty or frustrated. That then, is peace.
Texas Joe - thank you for sharing your definition of acceptance. I am still trying to stop what is happening, feeling guilty and frustrated. Maybe with more time I will be able to be more accepting - I would love to feel peace at some point.
Carosi, well said. You are an inspiration. What an amazing thing for you to (have to) do. This journey will make us stronger if we don't let it destroy us. I agree about not wasting strength on anger and sadness. Concentrate on the good things that we can still accomplish, the good moments. DH got up this morning and suggested that we have a bath together (for the first time in many weeks). It was a very good moment. Didn't seem so good an hour later when he was angrily refusing to take his medicine and ranting to our friends about how awful I am. Well, Risperdal has come to the rescue and he is calm and pleasant again.
I too find myself fighting what is happening. Battling what I must learn to accept, I get times when I can step back and clinically see the bizarre changes in behavior and the physical decline and actually accept it but then about once a month I get mad and frustrated and behave like a rebellious teenager who is out to change the world. I know in my mind that this type of behavior won't change the course of the illness but after a while I realized the anger and urge to fight it are good, in that I am not giving up on all the other areas of my life that still require me to be proactive and not accept the things that can be changed with perseverance. The Lords Prayer comes to mind in that I need to be able to know the difference. It is a fine line and not easy to walk
DH ask me one day "What happened to that sweet little girl I married?" This was early on in this journey. Being sweet and naive is one characteristics that gets lost in a hurry. I had to grow up and assume all those things that he use to do. And yes, it does make you stronger.
Awwwwww sweet Grace. I know for a fact you are still a sweet girl. Bless your heart. It's really hard to be a sweet girl and a tough mama at the same time. Let's just get our red wigs and become "Sweet Potato Queens"..
Yesterday we had the 'meltdown' over my sister's all house water filtration system. Afterward we talked about it and today we did again. I asked him if he wants to chance getting work that he would be embarrassed because of something like happened yesterday. Asked him whether he would rather travel while we can, go as far as we can each month, use our private RV park membership and just go from park to park (all in WA state), or go for a job? If a job, how much do we do?
Yesterday's meltdown is causing me to accept the changes that are happening and accessing what our options are and which ones are practical. Yes, even in the early stages there is much to accept.
Charlotte, did you tell about this meltdown on another site, I must have missed it. Did he do something to/with the water system? Does he want to work? or has he lost initiative and interest, which is normal. (for what that's worth) There was a time years ago when DH would say he wished he had not sold his company. Me too. At least he'd have had a place to go sit every day. (What he did most of the time there.) I believe when a man identifies himself by the work he does, ....and once it is taken away...he is a lost soul. All my husband knew, did and WAS, was his business. He wasn't good at retirement.