Dementia: Piece by Piece by Day by Day

Hello everyone and a happy 2018 to all of you! I hope that this year will bring you nothing but amazing things and all the happiness you are searching for. It has been a very blessed yet stressful time here for us. While it has been wonderful having the entire family for the holidays and making memories each day, it has also taken an emotional, physical and mental toll on all of us as daddy still needs a lot of care. I will be honest, I was never prepared to take care of someone with dementia. It isn't something, I don't think, that you can prepare for. You have to grow up a lot. I mean, I am 34 years old, but I still feel as though this circumstance has pushed me to grow up faster. As a child, you never expect to have to take care of your parent. They are the ones that are suppose to live forever and take care of you. So when the roles are reversed, you have this feeling of fear and obligation both and it is hard to explain. They have taken care of you your whole life. From helping feed you, walking you to the bathroom, cleaning you up and putting you to bed. Now, you find yourself in what seems an alternative universe doing the same for them. It is hard to watch someone you love and admire, who has always been healthy, slowly start to slip into a state of helplessness. You struggle between being in denial and acceptance, yet never fully committing to either. I have never been more exhausted mentally, physically and emotionally in my life. Every time I hear daddy's bedroom door open at night, I wake up to make sure he is okay, or to make sure he doesn't somehow wander down stairs and out the door. I sleep maybe 3-4 hours a night which is nowhere near the 9-10 I used to get. I listen to and answer the same questions over and over again and hear him using my mom's name repeatedly (she passed away in 2005 and I haven't heard him say her name in years). That in itself breaks me emotionally. Some days he knows my name, some days it takes him just a minute to remember. He doesn't know a lot about me anymore. He thinks I have lived places I haven't and done things I have never done. He doesn't know where he is most of the time and sometimes talks as though he is back in the military. I of course play along with a lot as we are not suppose to tell him he is wrong as not to frustrate or confuse him further. However, there is nothing we can do to calm our frustrations or stress or pain. It hurt when mama passed away, it hurt like hell. We will never get over it. However with her, we lost her all at once, and with daddy we are losing him piece by piece. I don't know which is harder, neither are easy. I hate both reasons. The best way I can describe taking care of a dementia patient is being in a relationship that you know will end and there is nothing you can do to stop it. You spend every day with this person, loving them and taking care of them. You have a past with them, but they are slowly forgetting why they are with you and wanting to move on. You know the break up is coming and that one day, they will not remember you and you will have to pass them on the street as a stranger, but knowing they were so much more to you. And it is the hardest thing to realize, that no matter what you do, you can't make them stay. So you find yourself taking more pictures than usual and video taping every good moment so you too won't forget. You hang on to every little thing knowing that one day, when they are gone, they will be the big things. It's scary. I am terrified. But he is still here. I can't anticipate the worst because I will miss the best. If I focus on what will happen, I will not experience what is happening now. It is a game of tug of war and I don't know if I am strong enough to win at times. I just keep pulling, pushing through the pain of the rope burn as the rope occasionally slides faster than I expect and I have to hold on for dear life. But I am thankful he is still here. Regardless of what name he calls me or what state he thinks we live in, I can still talk to him and hug him and tell him I love him. I won't take these moments for granted, because despite the exhaustion, I have never wanted to stay awake longer in my life.