Quote from Joan's Blog: __________________________________________________ "So I have been thinking. He is not coming back. We both know it. I am no longer trying to make that happen. He is trying to hold onto the abilities and cognition he has, but he knows it is a losing battle. We are at a crossroad. Where do we go from here? How do we live the rest of this journey so both of us can experience some measure of contentment?
We do it by me slipping the memories of my husband into the recesses of my mind and heart, and letting this new person be who he is. I cannot expect him to do the things he used to do; to be the person he used to be; to respond to me and to life the way he used to respond to both. I can only help this new person through the rest of this most difficult journey by not demanding more than he can give or do. I can help him by providing activities for him. I can help both of us by making sure we continue to enjoy social events with friends, and quiet time with each other for as long as possible.
He cannot live in my world. I cannot live in his world, for surely I will die there. " ____________________________________________________________________
What do you all do when you don't like the person standing before you? How do you cope when you are so exhausted that you can't find the energy to tell yourself one more time that it is the disease and not the person you once loved? How do you buck up, pull up your sleeves, and love him no matter what, even when he's treating you so horribly that you just can't take it anymore? How do you keep your cool when you just want to scream?
Don't get me wrong, I love my husband dearly, and I will never give up loving him, but when you lose your best friend and the father of your children disappears right before your eyes, how do you forge a new relationship with the person that is replacing the one you've loved for so long?
Well, dsm, in my case, I don't try to forge a new relationship. I just try (not always successfully) to take it as it comes, and it changes from day to day. Some days I'm his biggest adversary, other days he tolerates me, we even have a rare day every now and then that he likes me. I pretty much don't let myself feel anything for him.
I too still love my husband but the man I live with is no longer him. I think most everyone has to find their own way through this awful maze. What is wonderful about this site is that you find friends to talk to, people who are experiencing similar things and just the knowledge that you are not alone is comforting.
You are new to this site, so you are not familiar with my desperate struggle over the last two years to answer the question you have posed. I can only say that it is about acceptance; it is a process; a learning experience; and it does not come all at once. I know it is a lot of reading, but I would suggest you go to the home page, click on "Previous Blogs", and scroll through the topics. Some of the titles will jump out at you as addressing this issue. One of the most recent is #448 - Acceptance Comes in Increments.
Weejun is right about this website. We deal with issues that only other spouses could understand. And we are free to discuss them here. Sometimes there are no answers, but there is always someone who has gone through what you are experiencing and can offer validation and support.
dsm, I'm at the same stage in my "relationship" you are in, and I have no answers. That other husband is gone. There are still some good times with this one, but he isn't that other husband. There is no way to forge a relationship with this one because he keeps changing and not always in a single direction. Like anyone with dementia he fades in and out.
A sad thing is that I can't remember much of what my pre-AD husband was like. And we haven't even been on this road for very long. My therapist friend assures me that the memory has just been suppressed, and will come back, later. I hope she's right.
Whoa..I have been feeling exactly as you have mentioned..especially Weejun..you said it for me. I have been searching for one small part of G that I recognize from before...can't find anything at all! My Doc has been encouraging me to get out of the negative pattern i find myself in..how does one do that? There's not a whole lot of "positive" around here.
I spoke to a doctor during a visit when DH was having a procedure for the drug trial. I mentioned the shadowing. He said it is like a little child following his mother. That helped me to see my DH in a different way. He is "like" a child and can't be expected to perform as an adult.
1. How do you cope when you are so exhausted that you can't find the energy to tell yourself one more time that it is the disease and not the person you once loved?
You have to tell yourself that there is no one else who can take care of this person, and he didn't cause what happened to him, and you can't just abandon him. You couldn't live with yourself. You are doing this because it is the right thing to do.
2. How do you buck up, pull up your sleeves, and love him no matter what, even when he's treating you so horribly that you just can't take it anymore?
You love the teenager, then the little boy, then the toddler who is inside the body. You are not in love with him, but teach yourself to enjoy the little things. Your attitude towards him determines his attitude towards you. If you are resentful, he will be resentful back. Remember toddlers "monkey" emotions and words (if yours can still speak). So smile and act like you would if it were a close friend's child - smile and find something mundane to talk about - or the animals, or the weather, or a TV show or what you are cooking for dinner. When they get to stage 7 like my husband, who can't read, I got a subscription to National Geographic magazines, and he enjoys looking at them - the pictures are beautiful. Also the Vantage tour catalogues. Also, battery powered toothbrushes.
3. How do you keep your cool when you just want to scream?
You don't. You get into your car, leave the property, and scream. And say everything you want to say. Get it off your chest. Don't hold it in. This way, you let off steam, lower your blood pressure, and haven't upset anyone. I also tell myself that he is dying and after he is gone, I'll continue my life and be a better person for what I've been through. I've learned patience (with four kids, I thought that I had. I was wrong.), I've learned to listen to others and pay attention to feelings of others more than ever; I'm more considerate of everyone; and I accept people's sympathy and well wishes with open arms. I like the new me better than the old one.
jeanetteB I have the same problem as you. Some call it caregivers dimentia. We have been married 50 yers in Jan, 2010, and I have no real recollection what my old wife was like. I rmember no conversations, no good times between us and yet I know we were very close and talked about everyting. Others on this site have said this is not unusual but certainly not the rule. Some who have lost their LO do tell us that the memories do come back. I look forward to that cause we had a great 45 years. My DW of today is a sweet lady, except when she is angry, antsy, talking and frustrated, and reaction to normal things like baths, taking pills, potty activities, etc. Just ride with it as best as you can.. bill
I don't know if I envy those of you who have been married for 50 plus years or not. You do have memories of babies, first homes, success in your lives, extended families, --that's very good.
Those of us in second marriages..like myself.. married 18 years ago...and had fewer years of memories together. His children have a mother. They have "their lives" and we're not incuded, because Mom would be there"... They were angry he divorced her, so they aren't going to embrace our life together. I brought money into our marriage, we had several windfalls after we were married, and they resent we have "better stuff than Mom". (When they divorced - finances were audited and split 50=50 and she got 50% of his retirement pension). She never remarried.
Seems like less than 5-6 years after we married,he began to demonstrate personality changes, temperment, and what we had became tarnished...and worse. I stuck it out, not being a quitter. If anything, his actions contributed to some problems with one of my children when he lashed into him brutally one time. Like me, this son forgave him, but has never been able to forget the horrible words that were hurled at him. He totally lost the admiration he initally felt toward DH. Seeing that, I did everything in my power to prevent this from happening with other two, and in so doing, became the bad guy in the picture.
Snapshot today: I'm Alone - Husband with Severe AD, no children to share with, help out, come visit, and their support.
Hinesight is indeed 20-20. If I had it to do over, no question. I should have left after 3 years. For the last 8-10, there was no way out. I know I need to "find me again", but it's really hard when you're 70 plus years old, don't feel well, and can't get out of the house for other reasons as well. (House is on the market - so it has to always be show ready - etc.
((Nancy)) I am "only" 42, and it is hard for me to "find me again" too.
((dsm)) It is hard, if not impossible to form a new loving bond with the stranger who is holding your husband hostage.
It will be very difficult, but you need to let go of who he use to be... who you use to be together... keep those memories protected in your heart for the both of you. What you need to do now is to try to accept who he is now, who he will become later and do your level best to care for him and keep him safe. ALWAYS remembering, caring for him, should not, and can not, come at the cost of losing yourself!!
I agree with ((Mary)) dont hold in the pain, if you want to scream, SCREAM!!! He wont remember, and you will feel a whole lot better after. I remember once I was just filled with rage , at God, at the disease, at this horrible man who stole my husband... I was heartbroken and I was TIRED of always having to be strong. I took some dinner plates and went out in the woods. I screamed for all I was worth and threw those plates against a big tree. It felt wonderful to let out all that poison.
As for the memories, I can only share that Lynn has been in a nursing home for 8 months.. the first few months were hell!! But now, now I AM remembering who we use to be, all we had, all we were together. It is different than the earlier stages, because I am not trying to hold onto who we use to be, I let that go a long time ago. I am not mourning these loses. Now, I am just treasuring the memories and it brings me comfort and peace.