Today's blog and the previous two ("Ignore" and "Arguing") seem to have formed a trilogy of sorts on dealing with our spouses' Alzheimer's behaviors. You were way ahead of me (as usual) on today's blog, but I have finally learned the lesson you have been trying to teach me. I invite you to log onto the home page - www.thealzheimerspouse.com - and read the blog. Please post comments here.
What a great blog! While I don't have all the problems with my DH that Joan and others have, I do have enough! I have found one thing that helps with answering or not answering certain questions - like the TV show plot- for instance. If I hesitate for a few seconds before answering at all - most of the time he forgets he asked, and I never have to answer. This has worked for me on other matters also.
Joan--I agree with your blog today and it reminds me of a conversation I had yesterday. I went to a local Eldercare presentation and heard a talk by Dr. Bill Thomas, a geriatrician who developed The Eden Alternative and The Green House Project. He is a leader in the field of developing new concepts in long-term care for elders. Anyway, after the talk I told him my hb has EOAD and asked him whether any studies had been done to see whether residents at those types of facilities who have dementia need to be medicated less for behaviors (in other words, is there a concrete way of determining whether these concepts produce better lives for dementia patients)? He chose to ignore my question and launched into advising to me focus on the positive rather than the losses, etc., which I think ties in with your blog of expecting nothing and you'll never be disappointed. While I agree that both concepts are worthwhile goals--my question is--how realistic is this advice for a spouse? I think perhaps adult children are in a better position to follow this type of advice. In time, we spouses may become able to do this type of thinking, but not without a lot of suffering first!
I agree with you about the suffering. The emotional suffering endured from following the "expect nothing" advice could fill up another entire blog by itself. By the time we are finished expecting nothing, ignoring, not arguing, not discussing, and doing everything ourselves, we have nothing left of our marriages. Except a person who looks like our spouse.
Joan, that is what is depressing me the most right now is we have nothing left of our marriage, except a person who looks like our spouse. You got it! That is it! That is the bottom line of everything that is horrible about this disease. We are married but single, spouse but caregiver, no wonder I don't know who I am suppose to be anymore.
The other things that I was thinking about when I was reading your blog is I have only 1 friend left that actually is interested in knowing how I am feeling about what is going on and how I am dealing with it. Your blogs are so wonderful and descript( saying it better than I have been) what I have thought about doing is copying and pasting some of your blogs to her email address. Would that be alright, I wanted to ask your permission first.
you are welcome to copy and paste any blog. You said it perfectly - " We are married but single, spouse but caregiver, no wonder I don't know who I am suppose to be anymore." Somedays I think about the husband I had, and want desperately to reach out and touch him, but he's not there. Expect nothing - how sad.
You sure' hit the nail on the head' with this blog! Just today I was once again reminded that "my husband" is no longer here,I was moving furniture around and dropped a dresser on my toe--of course I yelled and grapped my foot,and there was NO reaction from him at all. Now i should have known there would not be,but you never stop expecting IT.I look at him and say I love you,he says it back but there is nothing in his eyes. Does anyone else notice a lack of closeness ,it is like he knows who I am but not that I am the woman he has loved and been married to for 44 years.
It seems my son "gets it" better than I do. I find it so difficult to separate myself so completely from my dh and become just a caregiver. My son keeps reminding me "he's not the father I had and he isn't the man you married." We still love him unconditionally, this stranger in our loved one's body.
I think that is why I take care of my DH better when I consider myself his caregiver. It is still next to impossible but it hurts me less if I can take myself out of the picture(kind of like an out of body experience but mentally and emotionally instead of physically) Most of the time I have trouble accomplishing this but every once in a great while I can actually tell that is what I am doing. But basicly I think we are never going to be able to detach ourselves completely. shirley, I totally understand why your son sees it so much more clearly than you do. The marriage relationship, I think, is the closest relationship there is. Joan, thank you and I will make sure that I add that when I copy and if ever you decide you don't want me to do it let me know. The only reason why I was interested in doing it is she is the only friend I have that has actually taken an interest in really understanding what I AM going through and REALLY WANTS to know, that doesn't happen often.
I think it's easier for those who haven't had a "heart & soul mate" marriage to be "aloof" and out of body when caregiving, but still there are frustrating times. I'm tired. I can't say "please go back to bed" at 3:00 a.m. when he's roaming. I have to lead him to bed like a child. Then he's up again in 30' and so on the night goes. During the day he roams, too. Personal care? Whew! Not a fun time; expect others have the same battles.
Joan, I know I am beginning to sound like a broken record here - but - be thankful Sid can call to you while you are in the shower. I would love to have Ron say my name. Be thankful Sid can use the cell phone to call you at the grocery store - Ron has been unable to use the phone for so many years - I have lost track. Yes, these things can be, and will be annoying - but one day they will also be gone. One day you will welcome a crooked little smile - that I see only occasionally - and be glad you still have him here with you and expect nothing more. And I quote - " We are married but single, spouse but caregiver, no wonder I don't know who I am suppose to be anymore." Somedays I think about the husband I had, and want desperately to reach out and touch him, but he's not there. Expect nothing - how sad.
I don't expect nothing. I get it a lot; but I think if I expect nothing, then all hope is gone and we stop seeking that one little thing that may make a difference! In my daily routine of doing everything for him, I forgot to try to get him to do some of the things himself. I have been feeding him for over a year. I get it done and it just seems easier and neater. BUT NOW I try every once in a while to put a fork in his hand, even put the bite on the fork. AND every once in a while he will surprise me and get that bite to his mouth on his own. So if I try, maybe he will stab that food with his fork someday, too. Zibby, I've had those sleepless nights, too. Hate it! Especially when I am so tired and I know he is never going to lay back down. And, Lord, the things they can find to get into or even just move somewhere else! I get through it because I have family and lots of them. My daughter (34) moved back home with her husband and 2 boys (17 & 18). She left her own home. My oldest daughter (41) moved from 3 hours away with her sons (23 & 18) and her daughter (15). My son (37) is just around the corner with his wife and 5 kids (9, 7, 5, 3, & 18 mos.) I can drop him off there if I need to and he will be fine. My in-laws are pretty much in denial, but I understand that. I have a SIL who works with people like him every day and would watch him if I would let her. Until crowds and strangers started to set him off, we would go places with my sister and her husband and his cousin and her husband. I read about some of you going it alone and I feel so bad for you. I know I couldn't do it, but with the family I am blessed with....I can.
Linda, you are indeed blessed with so much family to help you along the way. My only sister lives 700 miles away - no other relatives at all. So, I'm it. It is what it is, as we say. We will survive. Bless you and your wonderful family!
Yes Linda, oh how I wish people cared for us like your wonderful family!
yesterday on the 2 hour drive to town, along the coastal and mountain highway, I had wee expectations that dh would notice the "white bushes", they start to bloom early November is showy white splendor, peeping out from riotous bouganvilla and red poinsettia.
(They are a mini white poinsettia bush, tiny pure white flowers, also called Snow on the mountain, Mexican poinsettia, and Christ flowers, (for their clean whiteness)
We used to have a contest who would spot them first, there are about 30 spots along the drive, the first one is as you pull out our driveway.
He missed most spots, occasionally one would be so bright and sprawling half in the highway, he would say, oh the "white bushes"
As I would drive close to one, I would wait, to see if he would mention it...sadly, now the contest is over. I cannot expect it anymore.
But they are still there to see, and smell. I pray that as the years go by , I do not get saddened by them, with memories of happier times.
No expecting the "BUSHES" yell anymore, trying to beat me to it.