Mike’s Perspective . . .

There is a woman whose husband has had brain surgery earlier this week and she is having a hard time emotionally right now.  I asked Mike to write to her from a caregiver’s standpoint and I liked what he wrote so much I thought I would share it as today’s blog . . .

Life with someone who has a Cavernoma is not normal. You learn quickly that everything is different now. Your other half cannot do like they use to. You have to keep in your mind that they want to do everything they did before. Now though they have a health problem slowing them down. Today they might be at fifty percent of their normal energy. While tomorrow it could be more or less energy. So you cannot really plan anything due to what will tomorrow bring, but you want to give them the best in life. When they wake up with a bad day you spend time wrestling with what to do today. You know they will want to go on today like every other day. So I have to remind them that you need to take it easy for their own health. How they respond can change many times through the day. You might get a happy response then an angry one next time. So patience is a key. Keeping in mind how they are feeling at that time. They can be depressed or not feeling good.

Knowing that they will see later on how they responded. When they do it breeds fear. Fear that they will ruin your feelings for them. To the point that you will want to leave them. Understanding that your feelings are not based on how they react all day every day.  So you have to reassure them you have not changed your feelings for them.

The physical problems are a unique experience. You get days where they may not be noticeable then there's bad days. On the bad days you may be a caregiver. This can range from steadying as they walk to trying to convince them to stay seated while you do everything in the home. If you are like me you enjoy being the caregiver when all of your life it was the opposite. Being in a wheelchair I have wanted to be independent so I understand the feeling of I do not want help. Even though you see the one you love and want to do everything to help them. It has ranged from hurrying to keep them from falling to getting things off the bottom shelf at the store. Learning the triggers to problems is a constant thing that can change. Like bending over makes you dizzy to certain sounds that trigger the effects. Yes your life may never be the same, but you see that they are more important than wasting money on movies. To me my other half is the most important thing. Wasting money on things that are triggers is not important to me. Making sure that they are safe and not put in the wrong situation is. I try to find ways to keep life interesting. Because you cannot live a life in fear of everything. Sitting at home scared is not a life. If you are adaptive you can see things like a simple walk can be enjoyable.

So you deal with the times where they are not feeling good or happy. I do not want a happy go lucky life where it gets boring. A challenging life can be more fun. So no matter what mental or physical situation she is in you need to realize what they are going through. Do not stress out. Keep in mind how would you react if you were them. You might act a whole lot worse to your loved ones then they do.