I thought the best way to answer the frustration and confusion experienced by our new members was to write an informative blog to address their concerns. I invite everyone (newbies and verterans alike) to log onto the home page - www.thealzheimerspouse.com - and read today's blog.
Post comments here. Advice by veteran's is welcome. Thank you.
Joan, next month it will be 4 years since DH was dx'd with alzheimer's. He still isn't as bad as some LO's are and there are still times I react in the wrong way, especially a couple of weeks ago when he accused me of hiding money from him and cheating him. I just cannot take that type of thing without fighting back. Maybe I am a slow learner but I hope I will get better and more in control of my emotions. There are days when he just irritates the hell out of me and then there are days when he seem almost normal. I guess like everyone here it is fair to say "I HATE THIS DISEASE!"
Funny, Joan--your blog post today fit right in with a question I have for all of you "vets" who have spent years learning the basic principles of not arguing, acceptance that the spouse you married is not there and not coming back, etc. I think I am getting there, but I have one sticking place. On good days I am vexed many times by little things: the way my LO never cleans up after himself, the constant questions, the ongoing bewilderment, the items that need 'fixing', etc. On bad days I reel from his anger, impulsiveness, arbitrariness and hurtful words. (Never anything physical, thank the angels). I "know" that I should walk away, not argue,accept, etc. and most of the time I can do that--for my own self-preservation if nothing else. The question: At the end of the day (hour, ugly episode--you name it)--who is it that you hug, kiss, hold the hand of, go to once more to re-connect with?? The person you married, or the person with whom you live now? And if the answer is 'the person with whom you live now", how, on the bad days, do you bring yourself to 'let it go and stay present with your life as it is now?" I find it VERY hard some days to make that transition. What helps you to do that?
I still don't ALWAYS get it right, but most times I do. Partly I think it's practice. I've been Caregiving a very long time. But, atleast for me I think I can do that, easily and readily because there is really no malice in his actions and behavior. Maybe I had a head start growing up in a big family, but so much of what he does and the way he acts is really like a big child--wiilful; stubborn; selfish; impulsive; repetitive, etc. You don't smack the child, punish the child, or argue with them. You calm them, forgive them, and move on. Your LO will rapidly forget the whole thing. Clinging to it only hurts you more. I also keep in mind the one time I blew it, about fall 2009. He'd pottied our dog OT, and then when OT came in DH told me he'd brought Chantey in. Chantey was a dog we'd had from 1984-1999. I automatically, without thought reacted, "I hope not, Chantey's dead." Devastated my DH. He'd forgotten. I felt horrible and there was no way to fix it. If I had just thought for a second and responded instead of instantly reacting. We are okay. It's up to us to get them through. It's not so hard to set their behaviors aside, unless there is true danger in them.
What an insightful question about who we connect with at the end of the day. When we were going through the worst of times - in the beginning, when he was irrational as I described in the blog, he often returned to "himself", and we held each other and cried. He swore he would do better, and I didn't know that wasn't going to be possible.
During time of the rages, temper tantrums, verbal abuse, and total horror, I could not re-connect with him at all.
Now, he tells me every day that he loves me more than anything in the whole world, but Alzheimer's Disease has done so much damage to our relationship, and his regression into chidlike abilities, reactions, and emotions, that I cannot love him the way I did for the first 36 years of our marriage. It is a different kind of love - others can explain it better than I can. All I know is that the emotional pain of losing the love we had destroys me a little more every day. I build walls around my broken heart, but they don't always hold up.
Tryingforpatience, for me this is now an easy question to answer. Just as Alzheimer's has stages, so do we go through stages of our own. Our feelings of love also go through different stages. In the beginning, I held on for all I was worth. Our love was amazing and worth fighting for. Then I didn't know that no matter how hard I fought, the love of my life was going to be stolen from me bit by bit, year after year. The earlier stages were so emotionally painful.
Lynn sadly went through a horrific time with aggression and anger. My heart broke for him..and it shattered me to my very core. I DID know it was not his fault, but sometimes.... Lord it was hard to remember that "this" was the man who had always loved me so completely. During that time it pained me to remember the love we had. I had no help so I was kept very busy with his personal needs, I didn't dwell on what we were losing. I wasn't in denial; I simply could not cope with all we had lost and all we were continuing to lose. You know how our loved ones seem to wane in their behaviors? One minute Lynn was sweet as punch and the next he was looking at me with pure hate in his eyes. In order to survive, I too was able to go in and out of my roles.. one moment a wife, the next a caregiver. It was HARD to adapt my feelings this way, but it just wasn't his fault…. Once I truly knew that in my heart, it was easier to let the hurt go and hold onto the good times.
Now Lynn is late stage... the love is so different than the passionate love we once had. But it is no less than before. In fact in some ways it is stronger, deeper if you will. Unlike some, I do still love him as my husband. I was never able to "detach" Perhaps because I was not willing to ever let him go until he was actually gone. Even today there are glimpses of "My Lynn" .... I treasure those little sparks of him so much!! He has lost so very much, we both have. He may not be able to love me as he once did, but he is still able to express his love for me. To me that is miraculous!! An "I love you honey" today... it means so much more than it ever did before. Alzheimer's takes so much, but it isn't taking my love for him, ever!
I don't know where I should put this...... I am in tears reading of another newbie to our family, Lost Jan. How many in the past few weeks have found us. What is happening to us. I am just so sad about this. It just seems to be so many.
Joan where would we be without you, Thank you for all you do.