I started to title this discussion "I can't do this...!" My husband was diagnosed with MCI by a neuropsychologist in January. An MRI in February showed "moderate generalized cerebral atrophy." He is taking both Aricept and Namenda and functioning fairly well. But I see changes that no one else sees. He was angry at me all weekend about nothing as far as I could tell. I've spent a lot of time crying the last few days. Most of the time I feel bewildered and upset. I really am not convinced I can deal with him now, let alone when things get really bad. I come here and read and see what you are all going through and panic. But then one of the silly threads starts, and I think that maybe I can handle it. If you can do it and still be playful and joyful, maybe I can too. But it's a big MAYBE. I admire all of you so much!
Janet, some have said that the early stages are the hardest where they do not feel that they are the problem and their words and actions cut like a knife. We are the outsider and out to get them. I wish that I could say something to perk you up, but there really isn't a thing to say. Keep your spirits the best you can and remember that it isn't your fault so don't take the blame for it. You can do you best to keep the peace at home and avoid spats. Just don't ever take responsibility for what is happening. You didn't do it.
I have a very smart girl cousin who told me about each of us having our energy. when we are being "sucked" of our energy, we need to visualize ourselves in a big balloon that is keeping our energy in for us. Smile, agree, get by, but save as much of your energy in your bubble the best you can for yourself.
Janet-I think it helps when you just give in. The monster is here. You or your husband did not invite the visit. There are no "what ifs". Nothing the two of you did would have fended off the beast. Early diagnosis and treatment wouldn't have mattered. Visit with us who are also living in your shoes. The feeling that you are no alone in facing this destroyer of dreams does help.
Janet, in addition to the Wise Words from Mary and bluedaze, remember that no two patients are alike. Your husband may never develop any of the really ugly symptoms. Really. For example, fully two-thirds of AD patients never develop aggression or rage. Your husband may be starting to realize that he isn't functioning as well as he used to, and he's scared and upset. This could go away soon, as he comes to terms with the new situation. Or the MCI might not ever develop into full-blown AD, it could even go away.
Be as loving as you can, under the circumstances. Our spouses can pick up on our emotions, and your tears and fears may be feeding his anger and frustration. Tell him gently that he is hurting your feelings. Leave the room (or the house) if he doesn't settle down. Come here and vent.
And remember, all of us have found out we are much stronger than we thought we were. We learn, we grow, and we get strength from each other.
I place myself in a big bubble of blue light, (the healing light.) When it gets to be too much, I just envelope myself in that big bubble of blue light. You have to envision it. It works for me. May be too esoteric for most, but offering what I can. It's protective. Yes, someone else's energy can suck you dry if you allow it. It is up to you to allow it or not. Sometimes our energy gets drained, but you can see there are a lot of playful souls on this site.
My entire house is painted in various shades of blue. I find it energizing, calming and mood elevating. My red cats also show up beautifully against it.
Thank you all so much. Theoretically, I know everything you is right - especially about just letting things go. But it's so hard. I'll learn.
You are making me want a cat. We used to have them early in our marriage, but I developed allergies. I ignored my own allergies, but when one of our sons also had them, we decided we shouldn't keep the cats. I miss them. I also have a lot of blue in my house.
Uh-oh, Janet, you shouldn't have told us that. Now we'll all offer you all sorts of unwanted advice on getting cats, how many, what kind and color ... just ask Joan.
Janet, Remember, you didn't cause this, you can't fix it, and you are doing the best you can. If you read some of the older threads on here, you will see others that felt the same way you do.They didn't think they could do this. Now, they are still sad, angry, and look at others farther down the path and say, I can't do that! But, we do. We are stronger than we believe. One day at a time.
We all have our various ways to do one day at a time. For some it is chocolate, or wine or both. Coming here and realizing we are not the only one helps. Passing on some advice or tips we were once given to someone new to this "heck" helps. And the humor, sometimes out of hand, sometimes intelligible to others, sometimes intelligible to us. For some it is time by ourselves, at the mall, at the movie, in the tub, or in the other room. Family or caregivers to come in and spell us. At some time, for some people, it is a nursing home.
Or maybe a good scream or a good cry.
My DS has type 1 diabetes. He knows he can't give it back. He wants to, and hopes for that option to come along. But it has gotten easier for him as it becomes less new. Not better, but a little easier. He still wants to give it back though. Maybe someday we can give this disease back also.
Janet, this disease is confounding and a mystery to each of us. everyday there is something new to learn and educate yourself with. knowledge is power, the more you hear from those of us who have entered the dragon before you the more you can learn to be prepared. that is a real possiblity that many of your spouses will never have some of the unwanted personality changes others are dealing with. enlist the help of a very good doctor -who is willing to work with what will make your life tolerable during the course of this disease -like others have said when times get nasty, its time to get aggressive in our loved ones treatments to get us thru it all-divvi
If you try to figure out what you did wrong or what if you'd have done something differently, you'll drive yourself nuts. And then where would the family be? That's what I've been doing the last few days and my very good friend asked me (just about an hour ago) She said: What are you smoking?
So, you didn't do anything wrong! There's nothing you could have done to prevent it? There's no cure! It's one of those things to accept and then sort of roll with the punches. Like the person above who has the blue balloon with the energy in it--be sure to save enough for yourself! You'll need it pretty soon!
Among the things that we all wish we had known at the beginning is that the most important thing a caregiver can do in the early stages is remember that s/he is entitled to a life of their own, friends of their own, and interests of their own.
There is also a mantra that I wish all caregivers would remember:
IT IS NOT MY FAULT, AND THERE IS NOTHING I CAN DO TO FIX IT.
Which is the only answer when they get mad at you because they have this disease and they want it to be all your fault.
Janet, it's true that he may never have the rages amd nasty times that some on here have had to deal with. So far, my DH is so sweet and loving. He's only concerned about me. It may not stay that way but it sure makes it easier during this time.
Also, from reading the posts, apparently there are several medications that help even if that does happen. You will find out how to handle situations if you keep reading the wonderful advice given here from experienced people who are farther down the road than us. I love this site. I come here every day.
My biggest problem right now is being overly concerned about what's farther down the road. People on this board tell us "don't do that....just take one day at a time." We're all in this together and somehow we'll get through it.
I know what you mean about it being a problem to be overly concerned about what's yet to come. I'm obsessing about it, and that's a major reason I'm having so much trouble coping. I've been reading this site for some time now and love it also. We're all so fortunate that Joan started it.
Janet; May I give you a suggestiion about your journey o f alzheimers You have just begun....I have been on this journey for 10 yrs with my dear husband and have found that their are many similiarities in each one of the journeys we are endeavoring to finish however each one is different. Be prepared and learn from us here but also, DONT BORROW TOMORROWS TROU BLES TODAY. Enjoy your dear husband every day while you can. Cherish each moment of being able to communicate. Begin to become independent and gradually take over decisions, make sure legal matters are taken care of while your hus band can still do so. You can do this as we are all proof of enduring . We will help you ;
"Don't borrow tomorrow's troubles today"...that is my major problem. I am a planner and if I know what is down the road I can cope. It is the not knowing what, when, and how? I am afraid to plan a trip. I am so afraid of what tomorrow will bring.
Planning is good, learning is good, being prepared is good. But don't be so afraid of what might happen that you can't enjoy the good things that are happening now.
Joan posted a beautiful essay by Richard Taylor, "You Say Goodbye and I Say Hello". Joan, how do we locate that now?
I can only add that this site is a 'Saving Grace' for me. Its nearly my blue bubble! For too long, I tried to 'be better', 'do better', etc. thinking that for some reason whatever was wrong, was my problem to fix. Even with a diagnosis, it was only until I found this site that so much of what I've been baffled and upset over, is EXACTLY the same things many of you have experienced! So much of the time I can only read and say 'Amen'.
Finding a space to breathe, to claim a part of any day for being who we are, no matter what color that bubble may be, is so important. We too often forget it until exhaustion slaps us right in the face. Continued thanks to Joan.