The following was posted on my own blog http://theworldofalzheimers.blogspot.com/
just thought I would share with all of you. You have all helped with this disease and getting through the rough spots with my husband.
I had had a frustrating day. I was venting, complaining to my son about my husband's inability to understand simple instructions, being confused about the same thing over and over again. He should be able to pour himself a cup of coffee, he should know the difference between a roll of paper towels and toilet paper. He should.......and my son interrupted me. "Mom, you are expecting him to be normal, he isn't, he has Alzheimers. You need to let go of your expectations" The cold splash of his words hit me. After all this time of living with my husband and his slow descent into the middle stages of his dementia, I finally reached the turning point of coming to terms with the reality of this disease. Normal doesn't exist in our home anymore. I have let go. Normal is coming downstairs to have a morning cup of coffee and conversation with my husband. Now it is explaining everyday that we are married and I am the Adele that he refers to in the abstract. Normal is having a partner in marriage. Now it is having a full grown man becoming delusional, confused and more and more dependent on me for the most basic needs. Normal was being able to go to the grocery store alone or an art class. Now I cannot leave him for even several minutes for fear what he might do in his panic. I have let go of normal. Acceptance is part of dealing with this disease. As I look across the table at the man I love who is now the shell of the man I knew I realize each day will take him farther and farther away from me. Now I don't try to explain or rationalize, I fib. "When will we go home?" he asks. "We're spending the night here", I respond. "We will go home tomorrow." "Did you leave a note for Adele?" "Yes, I did." It has made life a little easier. We live in a strange world now, a world of twists and turns and sudden unexplained behaviors. There is no rhyme or reason to his strange questions and responses. And I know that nothing can stop this downward spiral. Nothing will bring him back to me. So I must learn to live with and accept this new relationship. This alien in the body of my husband. Yes, normal doesn't exist in our home anymore.
Thank you for your thoughts. You've touched on paths that I know we will be going down shortly. I pray I will have as much grace as you are showing. Blessings to you and your DH and the rest of your family.
You are so right, savadele! We do not lead "normal" lives anymore. I try to do as you and enter into his world, whatever, wherever it may be at the moment.
savadele, very well said indeed. I am constantly telling myself that day after day - things are not the way they used to be - things are the way they are now and will no doubt change continually.
I just read your Blog(s) and want to congratulate you. Your posts were really good. I also have a Blog for Carol and though it is different than yours, same platform, it is still trying to tell our friends about our life with AD. If you want to see mine go to:
http://howiscaroldoing.blogspot.com/. I am trying to come up with a new Post which I talok about on Joan's blog for today. I liked your thoughts on "normal".
Savedele, you gave us all some good advice. As Joan says, it's our new normal. Thank you for writing this. Maybe it will help the rest of us to let go of normal.
As you've all said, our households *are* normal--not the *old* normal, but the NEW normal--whatever and however different it is for each of us; and *normal* will change perhaps daily, monthly, yearly. We can adapt; we will adapt; we will be changed, be overcomers and emerge on the other side stronger, wiser people. (That's so easy to write; so tiresome to experience.)
It's been so long since we've had what others consider as a normal life that I kind of forget what that was like. And when I left home for a trip recently, I had some trouble with 'normal' conversation, talking during meals (we don't as he cannot), etc. Our 'normal' is whatever is happening at the second it happens.
Savadele - Thank you so much. You described so perfectly all the feelings I have gone through reaching this point of "no expectations". It was hard getting there, it was hard trying to accept the fact that he couldn't comprehend what I was saying. You're sitting there looking at your husband, and yet he's no longer the husband you had. You can't discuss anything with him, you can't expect him to help you make decisions or even give you comfort or support if you're not feeling well or have a problem at work, etc.
You suddenly realize you're all alone, taking care of a large child, and not wanting to think of the future when it's only going to get worse.
I'm so grateful for being able to communicate with all of you. It's such a comfort to be part of a group that's experiencing the same hardships, and who can relate to everything you say.
It's so sad ... this miserable AD has robbed us of what should have been precious days together. Instead I have to spend so much time telling him that I am his wife, and this is our home, that we live here together, etc.
The struggle to 'keep' things normal while our loved ones are behaving and doing things in such DIFFERENT ways, is a challenge and that word doesn't really define it as most of you already know. Even though we LET GO..its still hard to realize that the NORMAL REASONING just isn't there.... Yesterday..I was trying to find some spray to get rid of BEES swarming around near our back door..told DH there were bees outside so don't go out there.. He had a bowl of ice cream and walked right out into the bees with that ice cream as unconcerned as he could be.. I yelled..'you have ice cream..the bees are coming to the ice cream' . He didn't respond or react.. Just went on eating and the bees were buzzing..he finally walked away and around the house and came in the front door. Thankfully he didn't get stung..BUT its the sheer unpredictability of how they react to things that makes this so unsettling.
I am having a very hard time letting go of normal when things go bad. It seems like once I see a new area of decline I first get mad. I find myself being mean and angry at what is happening. My poor dh has no idea what has happened because by the time I notice, he has forgotten what he was trying to do. When I rehash it to him, he automatically defends himself with some reason he did not mess up. I do understand I should let it go, but when the new behavior first happens I am scared. I am being slapped with the fact that this decline is happening faster than I can handle. Once the new issue is over I am o.k. with it the next time it happens. I am having a very rough time with this disease at this point and need all the prayers yall can muster. I am at the point that hearing "it is the disease" is only going to make me crazier than I can imagine. My chill pill is not chilling me anymore. The hot flashes are not from menopause, they are from my dh's "memory pause" as we call it. Thanks for letting me vent.
mammie, it is OK to vent. And this is a safe place to do it.
My husband's abilities come and go. He will go through a bad stage. The last one lasted two months. And then come partly back. Things can settle down, sometimes for months. And then it will happen again.
And yes, it makes me crazy. But I don't talk to him about it anymore. When they get bad enough you begin to realize that talking to them about the things they can't do is pretty useless. It just makes them sad and angry and makes you sad and angry too.
I'm going to have my first visit from a Care Counselor later this week. I'm gong to be making some decisions I'm sure my husband won't like that day. Which might mean that for the first time in over a year I'm going to have to talk to him about things he no longer can do for himself. It is not going to be pretty.
Mammie, I know just what you mean. Things are going along so well, I've adjusted to the New Normal and forget that it will change again. I guess I get scared when some new little thing pops up, because I want to believe that we'll stay in this stage forever. Wishful, stupid thinking, but I can't help it. We're still a team and I can't let that go yet.
Dear Savadele: You are right we no longer live a Normal Life....each day is a new challenge. I get the same questions that you do...."when are we going home"? I tell him we are staying here to-night, maybe tomorrow..This morning he was saying his Mother was going to pick him up...he was very confused....After taking his Zoloft and Xannax...his mood change, Thank Goodness...He told me I was a "Special Lady" that was nice to hear....It is a lonely life we caregivers have, even though, I have children and grand-children around at times....there is always something that is missing...The Life we once had with our Spouses..God Bless us all..and give us the strength and patience that we need....Rosalie
Normal????? Is there such a thing? I look around, and NO ONE is normal....the guy next door is always drunk, another neighbor beats his wife, the guy across the street is a druggie, another lady has strange men coming and going all day and nite....Another woman has 5 kids, and works full time, and the kids are always alone...need I go on?? I would love to meet normal people because I am getting convinced that all families are dysfunctional in some way or another...so with the alz devil, can we really even dream of normal??? If if does not make sense, it must be alz
Phranque, it makes perfect sense and that is ashamed that this is the normal that we are all used to. Maybe the "normal" we have each day with our LO is not so bad compared to the world's normal.... have a great evening..
Ever since this thread started, I've been thinking about normal - Normal, Illinois, that is. I live in Bloomington. Bloomington and Normal are twin cities - adjacent to one another. So, no, normal is not in our house, but I thought it was just a couple of miles away. Now I think phranque's right. Things aren't even normal in Normal.
Normal means usual to me. Something is usually done a certain way/ normally. If done an alternate way/ abnormally---not normal. What got me up-in-arms was when I had to get a physical from the Company Dr. for my job, and because of my disability, he put down in certain areas I was SUB- normal. Less than---defectivbe---deficient.
I DON'T THINK SO.
Dementia normal is just different than usual/normal.
I used to belong to a group of parents of special needs kids. No one liked the word "normal" so we referred to other kids as NDA kids--not diagnosed with anything.