I feel like I am on a roller coaster every single day, all day long. Sometimes the disease is so difficult and my care giver's well so dry that I think I must find placement immediately. Then a couple of hours later or the next day I think it really isn't so bad, I was just being weak, and I am doing OK coping. I may become tearful and very sad when I remember what a fine man DH was and where he and we are now. I feel like I have been snatched out of life - cruelly allowed to watch others living lives of love and activities, but banned from participating myself. I try to do all of the positive self-talk, but it doesn't do it for me unless there is some other event with it (a kind word from a friend, an offer to take DH for ice cream, empathy). Unfortunately those occur seldom. A good day is if DH asks me less than 20 times in one evening where everyone is and if anyone is coming and if he can call home. There have been days when I thought that if I did this one more hour, I would break. I don't call his doctor because I don't want to start sobbing on the phone or appear weak. DH is not as bad as many spouses on this site and the neurologist sees many other devastating neurological diseases in the course of a day. He did say at the last appointment that DH has a greatly accelerated case at this time. How do you all manage this daily emotional roller coaster and the inability to correctly assess your and his condition?
I'm sorry you are having such a hard time. As to how I manage, I do everything possible. I send DH to day care three days a week, he goes to lunch with friends one of the other days (although that may be coming to an end soon), I take prozac for depressions, xanax to help me sleep, and something else (I can't remember the name right now) for anxiety. I see a psychologist every other week. I try to make opportunities to be with friends when DH is at day care. Right now, DH is spending a week in an ALF so I can have some time away. I try to follow all the advice I've received here and from my PCP and psychologist, and I tell them very clearly how I am feeling and how DH is doing. I still have days like you're talking about. Caregiving is hard, and I don't think any of us get through it unscathed. I did find that I needed to tell my friend very clearly (and loudly) that I needed to see them more often, that I was very lonely and going crazy. I did the same with DH's friends.
Marche, I am sorry. I pulled up some other threads for you, we understand ((hugs)). If it were me I would let the doctor see your tears. Your pain is very real, tears are not a sign of weakness. As Janet mentioned there are medications to help through these difficult times. I know some here have found them to be a great help. I think time away is vital, are you getting any breaks?
Marche, the drs can only offer help if they see the real side. I agree with nikki that its time to lower those barriers and let the real feelings be known to your and his drs. they can react to offer assistance only if we let them know how bad things are and progressing. it may be of great benefit to let it out as well. after all its what they are here for to help control the effects of the disease for both parties.
Good neurologists listen closely to the spouse. They depend on your observations to provide proper medical treatment. If the neurologist doesn't listen to you then time to look for a new one.
There are various ways to communicate with the doctor. Copies of your journal (I recommend you keep one of his behavior), e-mails and phone calls. There are various advantages of writing it down, including allowing the doctor to read it when s/he has time.
Thank you, Nikki, for pulling up the threads. I have read through most of the old threads but did not remember those. Isn't it interesting that so many people use the same simile of a roller coaster?
I think the sundowning is what is driving me over the edge. Not bad stuff, but absolutely no short term memory. He doesn't recognized our home now and he thinks I am a friend. He is constantly looking for and wondering about his childhood family. He has lots of delusions and hallucinations about people in the house, or who have just been in the house, or are telling him what to do; again nothing worth medicating him to zombiness but I certainly need something to get through it. At his last neuro visit the Dr told me that thus far he has a very accelerated case. What scares me is that he had an aunt with EOAD that progressed very fast and then she lingered in a nursing home for another twelve years.
Although I know that it is not true, I cannot shake the cause and effect way that my brain thinks so I keep wondering what I/we did to deserve this. The isolation that so many have written about is numbing and destructive. I feel like a weak animal in a herd falling further and further behind. Guess I've watched too many NOVA shows - nature in action. Nature dictates that we all have to die of something and I find myself wondering if TB, pneumonia, and influenza might not be kinder ways to go. Maybe mankind's conquering of disease has shot itself in the foot.
I hardly slept last night, all my lovely respite time out the window. dH is coming home tomorrow and has informed me that I will not structure his life or schedule his time like at the residence because it is not be the same and I am not to be boss. I am not to come into his room at 07:00 with his pills and stand there and make sure he takes the, that is what they do and he is ok with that. I am not to remind him to shower, that's how they do it. I sure hope that bed becomes available soon. He also in formed me that he thinks the location I am thinking of living in is to far from his residence. WOW!! Here we go again. I was loving this time alone but his sweet personality is staying at the residence until he gets back there. He says he will try to better at home. Like hell he will!!! Back on the lorazepam again. He keeps telling me he loves me but I am not to be his caregiver. I wonder who is. I know, I will be good and just let it all enfold as it will. I will wait until he goes to ADP and close the door and scram loudly to try and quiet my spirit.
Jazzy - these diseases sure do suck! You need a punching bag to take out your frustrations.....we all need a punching bag!!!! Hope a bed comes up soon.
Marche, this broke my heart for you .. "The isolation that so many have written about is numbing and destructive. I feel like a weak animal in a herd falling further and further behind." Pretty apt description! Poor dear, are you getting any breaks? The sundowning was just horrible for us. Is he on any medication to help with that? I know there are many who do not believe it, but I do believe that the sun lights did help Lynn. In the afternoon when he would "peak" I would turn on ALL the lights, it did seem to help him some. I hope things get a bit easier for you ((hugs))
Jazzy, I am wondering, if he can articulate so well, maybe he does intend to "try to better at home". I join the group in hoping so ♥
Nikki, thank you for your kind words. He does go to day care. Namenda was added to his other meds last week and maybe, just maybe things are a little better (at least there weren't any "other people" in the house tonight.) I don't know why the heck I feel so lonely with all of the people coming and going (in his head). Poor dear, I cannot imagine what it must be like, except that it is all so real to him.
You are most welcome Marche ♥ Have you had a chance to look through the older posts on sundowning? Maybe you will find some helpful information? I am glad the hallucinations have eased, it is so difficult to witness. ((hugs of understanding))
marche I am so sorry for you sadness and difficulties and offer up a hug and another hug. I don't know how people do it, though I did for just over 2 years, I almost couldn't . God I wish there was a solution.