What comes our way, comes our way.

Brad pitching. Fall 2012.

Brad pitching. Fall 2012. Thank you Kim McCaffrey for this photo.

 

Last night Brad had a baseball game. But this wasn’t just any baseball game. This was the championship game. Brad’s team had beat this team earlier in the week and the boys were pretty confident they would be able to do the same. I was too.

At the end of the first inning, the score was 12-3. Them. I walked over to the dugout and gave Brad the drink I had for him. He told me, “We are gonna lose this game. There is no way.” I quickly told him I didn’t want to hear him talk like that, it was only the second inning and they could come back and win this game. (I am not sure I believed those words, but as a Mom, I had to say them.)

At the end of the 3rd inning it was 14-5, after one of their players hit a two run homer.  Our boys were looking pretty down. The parents were cheering and trying to get them psyched, but you could tell their self confidence was shot.

I know the feeling. There are so many times that I take an outsiders look at our situation and I think to myself : What the Hell am I going to do? I am going to lose the house and have to file bankruptcy and still not be able to take care of Jim AND the kids. Let alone me. How am I going to keep the kids on the right path through all of this? How am I going to make their childhood a good memory and not just a memory of Alzheimer’s and all that goes with that?

I talk to a lot of people in the Alzheimer’s world. Others that are care partners, doctors, friends of those that have a parent or spouse that are afflicted. I hear the same stories. I KNOW what is coming. Sometimes I think this makes this journey that much harder. I hear about the incontinence and the repeating of stories and questions. I hear the walking out of the house naked tales and about the yelling and arguing episodes. I have been told by many that I will not be able to afford his care and will probably lose everything.

When I tell you how I feel, please understand, I am telling you my journey, but there are MILLIONS out there that are walking this road with me.

Jim and I have always taken a lot of pride in always paying bills.We have really good credit and it has never been a problem getting credit of any kind. Not too long ago I had a long conversation with a woman whose husband also has Younger Onset Alzheimer’s and he is now in a facility. They have a young daughter Brad’s age. She told me how much money they used to have. (A lot more than Jim and I ever did). Then she proceeded to inform me that her house was now in foreclosure and she has barely kept her car from being repossessed. I told her I didn’t want to mess up my credit and that would really bother me. She quickly replied,”You won’t care. It won’t matter.” I couldn’t believe what I was hearing. How could I not care?

Flash forward just a few months. I am starting to not care. I am just able to focus on the here and now. Planning and worrying about our future past this year just isn’t viable. I know what is coming and unless I stumble upon some kind of miracle, she is right. It won’t matter.

Talk about depressing. Not only am I losing my best friend and living in a home that is emotionally void (sans the kids) while trying to keep up with everything, I also have that nagging in the back of my mind about losing our savings, losing our home and at the same time not being able to find $5,000 – $9,000 a month extra to pay for care for Jim (figures vary depending on what type of care and where he will be). Yep, that is enough to make this really strong, hard-headed woman just want to stay in bed. Or just give up. I am not a quitter, but I have to admit, there isn’t a lot to look forward to or  live for. Jim seems happier to be around than I am. I used to worry about saving each month for college for the kids. That now seems like just a cruel joke.

Back to the game. Last inning. They got the score up to 15-7. Then it was 15-10. 15-11. 15-12 with 1 out. 15-14! Then another hit and it was 15-15 and by the time the game finished it was 15-19, us. Our boys won the game!

As I sat and watched them getting more and more excited and I watched the other teams players look more and more defeated, I thought of our life. Our depressing life and what we have ahead of us. Or what I think we have ahead of us. Most days I don’t see anything to be excited, happy or joyous about. Then I realize that I have two fantastic kids that need me and I have a husband that needs me and parents that need me and friends that need me and a world that I have yet to see. I have a mission yet to be fulfilled. I have a purpose that goes along with the suffering and heartache we will yet endure. I am not looking forward to this journey. I am not excited or happy about becoming a spokesperson for this cause. But I will. I will and do the best I can. I will and make a difference to many. I will and it will help me too. It will help me keep putting one foot in front of the other. It will force me out of bed each day and give me a higher purpose. It will keep me smiling and finding a reason to live. I am in a game too; a game of big consequences if I don’t win. Winning means there will be a cure and a better way to fund care for Alzheimer’s patients. Winning will be changing the face of Alzheimer’s from someone who is old and “going to die soon anyway” to someone who is contributing to society and still has many more years to live. I need a team to help me win.

Brad's championship trophy!

Brad’s championship trophy!

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (2)

2 Responses to “What comes our way, comes our way.”

  1. Diane says:

    Awesome! My siblings & I are in the same boat with you…mom has Alzheimer’s and dad has been I. The hospital for various things and just went to assisted living on Monday. The finances are a big ‘thing’ on our platter right now. Mom is in respite care and comes home on Tuesday and we start our 24/7 care for her again. No one has a house big enough for her to come live with us and she wants to be with her husband in assisted living. That means 2x the cost and the $$ will go quickly. All AD caregivers have struggles and we are there marching with you, hugs to you and your family.

  2. Lee Ann says:

    I like the comment, “When the time comes, you won’t care.” You will make the decisions you must, at the time you need to, for the best of you and your family. Its a sort of gradual progression anyway , so one can usually see what is coming. But you make the best decision you can, and move on. No regrets because you will know its the best you can do. If you need inhome care for your husband, you make do. If your kids go to college on student loans, that can’t be helped. Whatever is best for all of you is what you do. And hold your head up, you are doing a good job.

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