waking up on the wrong side of the bed

We have all heard the phrase or used it as an explanation of why we are in a bad mood and we usually  give little thought in how it effects others or we try to stay as far away from people as we can. 

So what do you do when you are a full time caregiver and you wake up on the wrong side of the bed?

Well, don't follow my lead. Unfortunately there is no place to hide when you have someone else depending on you.  Do they understand that you just woke up in a bad mood? No, they usually think they are the reason for such a nasty attitude.  Are they? Not really. So what is the reason for waking up in such a bad mood? Who knows!!

I could guess that it has something to do with everyday being the same....routine is a great stress reducer for someone with Alzheimer's but it can be a wowzer doozy of a problem for caregivers, well at least for this caregiver. I could guess that it could be because this is Gabriella's next to last summer with us and all the plans we had for spending time with her and going places cannot be met. It could be that the simple task of going to the mall to walk around, or "window" shopping at target, Wal-Mart and my most favorite place Hobby Lobby can be over whelming and too much stimulation for Dave and if we do go he sleeps the rest of the day and goes to bed early just to recuperate. That is secondary to the fact that walking for any length of time is difficult. It could be that this time of year just reminds me how vacations are out of the question...I envy others who can go places without a second thought on how it will affect another person, and I envy other caregivers with loved ones who have Alzheimer's who can still travel.

It could be that the reality of my world with leaky faucets, clogged drains, an overstuffed garage, that I never seem to have time to clean out, a bathroom that desperately needs a new shower, a yard that I would prefer to mow and not rely on a lawn service to take of desperately needs to be mowed, tires that need air in them which I hate to do because I am not sure I ever put enough in, and Gabriella's car that still needs the air conditioner fixed occupies the part of my brain that isn't consumed with the care of not only Dave with Alzheimer's but an 18 year old daughter that I am trying to prepare for her last year of high school and moving on to college.  The realty of my world where I have made Gabriella cry more than I have ever seen her cry in all her childhood and a husband who sits quietly sometimes with awareness and sometimes without looks at me with dismay. I think the reality of all that crashes in in the depth of my subconscious while I am trying to finally get some rest and the result is "waking up in the wrong side of the bed".

So what do you do to relieve that bad mood? Well, once again don't follow my lead because I too often give in to it and make everyone else around me miserable. What would I like to do about it? Well in my fantasy world I would call a sister, or a son/daughter and ask for them to either come over and relieve me of my task for the entire day or ask if I could drop Dave off at their home for the entire day and stay home all alone!! I would sit with a glass of tea do Gabriella's scrapbook, watch a weepy movie, sit in the backyard, eat lots of ice cream, who knows because there would be so many things I would like to do I would have a hard time picking just one. 

So what do I really do to get rid of my mood. I usually warn Dave and Gabriella that I feel crabby and they give me some space and then about an hour or so later I am fine. This time around I read them my post and we sat around and talked and we all tried to come to an understanding. I don't want to be a crabby caregiver/mom/wife. I want to acknowledge that I have bad days without feeling guilty nor having everyone else feel that they caused my mood in some manner and I definitely don't want my moods to have an affect on Dave. His moods and feelings are so dependent on how I am doing.


Have you read the book If you give a Mouse a Cookie? 

"if you give a mouse a cookie, he's going to ask for a glass of milk.

 if you give him the milk he will probably ask you for a straw"....  

If I was smart I would use that energy to clean out my over stuffed garage but then I would be like that mouse because then I would need boxes to put stuff in, then I would need a trash bag, then I would need to sweep, then I would need...... that is how life is here in our house. That is how waking up on the wrong side of the bed can be, it can lead to many things that never get accomplished except hurt feelings or it could lead to helping each other cope with over tired emotions. Unfortunately, my crabby mood never leads to a cleaned out garage, fixed leaks, aired up tires etc. those things will have to wait for that magical handy man that will one day knock on my front door with tools in hand saying "I am here to fix all your household problems!"

So how do you balance caregiving with the reality of the rest of your life? I don't know. I probably will never know the proper balance because just as I think I have the answer something new will happen and the balance will be thrown off again. I just know that I will have to accept those bad crabby moods with the good days and pray that the good days out number the bad ones. Another way to balance those days would be to actually call someone for help but have you ever been a fulltime caregiver?  Just the thought of having to figure out who to call for which task is just that, another task to add to the long list of task. So I am saying here and now, don't wait for me, or any caregiver to call you. Instead, pick up the phone and say "I will be there tomorrow to clean your house, do your laundry, go to the grocery store, bring you lunch and chat with you, etc." you fill in the blank.

Monica

The Flip Side

Okay, so in the last post I wrote about what type of response you could get if you asked how Dave was doing. Well, there is a flip side to that answer as well.

I say many times that Dave is still Dave, but a modified Dave.  There are plenty of things that he can no longer do because his brain cannot make the connections. Remember, Alzheimer's is a disease of the brain.  There are still plenty of things he can still do.

Around the house he continues to be the sole caretaker of the cat. Not long after we got Sophia he decided he would take care of the litter box and feeding her, he continues to do that without any problems. He is still the one that I call on to hold her while I put her monthly flea medication on. As I said before he can still set the table, do the dishes (we have no dishwasher), runs the vacuum cleaner. He continues to help with folding and putting away the laundry. Our big vegetable garden is a thing of the past but we still plant flowers and make sure the beds are weeded.

"DAD!" or "DAVE!" is still yelled across the house when we have a creepy bug or spiders that need to be killed. When Sophia brought in the tail of a lizard she thought she caught and a poor baby bunny he was the one we called on to get rid of them both.  He may not be the spiritual leader to our family as he once was but he still prays for his family and friends.


We still make important family decisions together like any other couple. It may take more explaining to him and a little longer to make a final decision but we are still a couple together.

You see, he is still Dave.

 I have had people ask specifically about certain aspects of Dave's progression, like is he aware of what is going on, can he remember who you are etc.. I don't mind those questions because they are specific and we have no problem answering those kind of questions and it at least gives us the feeling that the person asking has some knowledge of the disease.

When asking how someone is that has Alzheimer's it is not the same as asking how someone is that has Cancer, the flu, or who has had surgery. Usually the answer is more positive....the treatments are going well, their hair is growing back, the fever is gone, the surgery took care of the problem, but with Alzheimer's the answer that is given depends on the day the hour and sometimes that very moment.

I always tell Dave what I am writing about and ask him if he has anything to say or add and he usually says "No, you did a good job at explaining things."  This time he actually had this to say:
                                               
                        "I find this stage the hardest. I know that I can't remember things
                         and when I see you doing things I keep thinking I should be able
                         to do that but yet I can't remember how to do it. I know  some
                        people are uncomfortable talking to me and I wish I could make them
                        understand that they shouldn't be embarrassed, I want to make them
                       comfortable. I hate when we are out and people talk around me like I am
                       not even there. I am still aware enough to know that we no longer get visitors
                       or phone calls and I know people don't believe you when you tell them I don't
                       do well in crowds, its hard to understand people talking all at once, I can only
                       keep one thought in my head at a time. I hate to say that I get scared to be out
                       when it is late because when I am tired I have a hard time with things. I almost
                       can't wait until I become totally unaware of my surroundings because then it won't
                       hurt as much to know certain people (dave was specific but due to the personal
                       nature of our conversation I will not give names) have walked away and I am
                       not totally sure why. I hate knowing that I don't know things and I have no interest
                       in the things I used to do. This is not how things were supposed to be."
              
Things are different now. We had plans and dreams that will no longer be accomplished but we still have years ahead of us to enjoy each other and family. The man that I married who enjoyed gardening, hunting, camping, fishing and barbecues and had a quick wit may not be the same man sitting next to me now but I can look in his eyes and still see that deep down inside Dave is still there and continues to be active as best he can be. 

Monica