Dear Alzheimer’s Disease:

Dear Alzheimer’s Disease:

My mother was diagnosed with you a little over 3 years ago. We think. She didn’t actually tell us for a while. See, she wanted us to treat her the same and see her as she always had been. I had noticed a few weird occurrences, but chalked it up to stress. She had had what the doctors thought was MS, but perhaps was not at all.

She actually had early onset alzheimer’s and was only 56 when she was diagnosed. Can you imagine? Loosing yourself at such a young age?

My first thought was, selfishly, what will I do without my mom? If I have to face cancer again I can’t do it without my mom. She was there for me through every surgery, every treatment, every big appointment. My first thought was to my safety and well being.

You took her independence. She had a very high functioning job. One that she did very well and loved. One that helped her to thrive and help others who needed it. You took that from her very early into the disease. She simply couldn’t keep up with the meetings, the emails, the needs of all of her employees, students, parents, administrators. She had to take early retirement and at her retirement party she was devastated.

You took her peace of mind. From the day she told us I noticed her researching. She researched constantly, how to slow the mental decline, what doctors to see, what actually helped and what didn’t… She was constantly on her BlackBerry or her laptop, looking up articles, journals, forums, etc. She read books and she told us to read books. She sent us to alzheimer’s facilities to “see how bad they were”. She told us how she didn’t want to end up in a nursing home “with people having to clean her”. As you progressed her anxiety about that grew stronger until it was the thing she thought about the most.

You took time with her family. She became anxious in groups, to the point that she didn’t want us kids to visit. The noise and activity, especially with the grandkids around, was too much. She would have seizures the doctors thought were brought on by stress and end up in the hospital almost every time one of us was to come up for a while. She couldn’t leave the house sometimes and my dad had to go to functions and family dinners, etc alone. Several vacations she wanted to take were cancelled because the simple thought of an airport or hotel or crowds would put her into a panic. She wanted a few last fun times with her family and she couldn’t have them.

You took her memories. She made a video for us all – about 6 months ago – telling us a few stories about herself, talking about us as a family, talking to the grandkids. It was during this video that I saw some real decline. When we were around she could hide it. She could change the subject or maybe we just didn’t bring up “memories” – she could say she didn’t feel well and go lay down. Sure, I noticed when she had trouble remembering her address or birthdate at a doctor’s appointment, but I was only around for those things once in a while and most families know that memory is a funny thing – it can be wiped clean from one area but not another. On this video she said several things wrong – things about our childhood, and perhaps even her time with our dad – that were not quite right. The wrong son was mentioned in a story, the wrong event in a time line…. You know what? She cherished those memories, and you just pulled them out of her head like a string out of a sweater. Like they didn’t even matter.

Most importantly, you took her happiness. The last 2 years of her life she was very unhappy most of the time. She had severe depression that nothing seemed to help. She could not get over the imminent ending she felt pressing down on her. You took every good thing from her and made it bad in her head. In her journal she wrote the last week of her life about not trusting her children and husband. About feeling like we didn’t trust her. She wrote about the sadness she had and the anger she felt. She wrote about the desolation and alone-ness.  You took every ounce of happiness she had and you crushed it.

And I hate you for it. I hate you like I have never hated anything or anyone else in my life. I hate you so much I can’t even put it into words. I want to hurt you and to stomp you and to crush you. But guess what? You even take that. You are not a physical being we can rail against or take to the justice system to be tried for torture. You even take the ability to fight you away.

Finally, you took her life. My beautiful mother; my strong, lovely, vibrant, sassy, wonderful mother; she took her own life a little over two weeks ago. It was her second attempt and this time it worked. I knew she would do it, she had warned us all she would not let you take her down all the way. I just wanted a little more time with her. A couple weeks later my son and I were to come visit her. He missed out on that last visit with his grammie because she couldn’t hold on a couple more weeks. You took my son’s grammie – someone who had helped raise him and had been an anchor in his stormy life. You took her from us.

You are cruel. You are heartless. You don’t deserve to exist. I have no words for the pain you inflict and the hurt you cause. I don’t even know how to start to describe it. So I will end with this:

“I have decided to stick with love. Hate is too great a burden to bear.” – Martin Luther King, Jr

I hate you, Alzheimer’s disease. But I can not wallow in this hate too long. I can not let it take my happiness and peace of mind like it took my mothers. I will focus on the love I have for my family and my friends. I will remember my mother as she was before she was tortured by you, and I will remind my son of her.

Love is the answer. Always.

I just need to hold on to that thought.

 

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Just show up.

Some days are hard.

I have been waking early and in pain a lot lately. I am trying to figure out what all this pain is, but have yet to pin point it. Going to several specialists in the next week or two. This morning I woke up at 5 and I was hurting from my head to my fingers on the right side, and both legs. I try to meditate when I wake up early like that, but I often have a restless body and brain.

I don’t like to write posts like this. I want to be funny and fun and smiling and bright. I hate to admit I am those things much less than I want to be. Much less, even, then I try to be. I hate to admit I hurt all the time. I hate to admit that I complain about my little ailments when there are plenty of people out there who would be happy to have mine instead of theirs.

I decided to write this post today because life isn’t about always feeling good. Or always being happy. Life hurts. Life hurts not just physically, but in other ways too. It hurts everyone and some times it hurts a lot. Sometimes life is about just showing up. Just getting out of bed and doing what you have to do. Or just waking up and doing what you have to do – if you can’t get out of bed. I know there are people out there who can’t.

It took me a long time to learn this lesson.

I had it easy in school. I got easy A’s and skipped school a lot. Told my parents I was sick and lay in bed reading. When I went to college I didn’t know how to do “show up every day, study every day” type of work. When I quit college and tried to move into the real world, I couldn’t hold down a job. I called in sick all the time. When my depression was bad, when I hadn’t been able to sleep, if I was feeling badly… which was all the time. I called in sick. And I lost job after job. Some of them I really liked.

Eventually, and with help from a friend, I figured it out. I figured out that sometimes you have to live hour to hour. You can do anything for an hour if you have to. So you get up and you go to work and you work for an hour. By that time it’s silly to go home, so you finish your shift.

All you really have to do is show up.

Some days that’s all you CAN do. So you do it, and day by day you get through it.

My son seems to have this same default setting – and I am trying to break that. Just this morning (after he got up) he told me he couldn’t go to camp because he hadn’t slept well because I won’t sleep with him at night anymore. I told him the fun things he was going to do and that it’s one of his last days, so he needs to go and have fun with his friends. He dragged himself (literally, dragging himself across the floor with his arms) through getting ready and we went. When we got there the kids were outside and when they saw him they all yelled his name and were jumping up and down to play. He smiled a huge smile and when we got in ran to play. Sometimes if I just get him to show up, it all turns out great.

Don’t get me wrong. We have wonderful days thrown in there too. We have terrific and lovely days where even if I do hurt, we have fun and we see lovely things, or just spend lovely time together.

But… some days are hard. And I just show up. And that’s ok too.

 

 

 

*Edit – AND sometimes “just show up” backfires too. Like when your mom makes you go to camp when you say you are too tired and the camp calls her 20 minutes later to say you have been puking everywhere. Poor little guy. I SWEAR he didn’t say he was sick, or even look bad when I took him. By the time I picked him up he was green.

Being Strong

We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face… we must do that which we think we cannot.
Eleanor Roosevelt

It’s been a rough week for my family – had to rush “home” for a family emergency.

Several people – both friends and extended family – have told me I am strong and calm and work well in a crisis this week.

Let me tell you what I know about strength…

Sometimes being strong means saying “yes, I COULD use some help, thank you.” Sometimes being strong means letting someone else take care of you. My husband drove like a bat out of hell, drinking 30 oz coffees until 4 am to get me home. He wouldn’t let me drive even though I always do the night driving. He listened to me cry and he held my hand and he was up early every morning ready to watch kids or vacuum or do whatever he needed to do. The ladies of my parents church brought meals. I can’t tell you how nice it is not to have to worry about feeding 12 people 3 times a day. Cousins and Aunts and Uncles stopped by to ask what they could do. My grandma came by several times, and my cousin came to watch the kids. There were still plenty of adults in the house, but we were running errands, cleaning, taking care of details, taking turns helping the sick family member. We didn’t have the energy or the focus to give our kids the attention they needed, and she did that for us. I appreciated all of this so much.

Sometimes being strong means you simply get through the day without completely loosing your lunch. LOTS of times strength means putting your own feelings/thoughts on the backburner and taking care of the needs of others. Sometimes being strong means you work well with those around you to find the best solution to the problem at hand, even if it means you let go of control and insecurity and your own needs for a bit. My family was great about that this weekend. Even though it was an extremely stressful time, we didn’t let our need to “be in charge” or our need to “take care of everyone else” or our need to “do everything” or our “frustration and sadness over the circumstances” get in our way of doing what we needed to do. I can’t imagine what it would have been like if we had had one of those people who demand to have things their way, or stir up trouble just for fun. We have a great family.

Sometimes being strong means taking deep cleansing breaths and letting go of the hurt. Sometimes it means sitting quietly for 10 minutes and getting your head back on straight and then getting up and starting again.

Sometimes being strong means calling your best friend/cousin to talk about nothing when you are starting to loose your cool – because you know she will ask you how you are and listen if you need, and then talk about whatever comes to mind to fill the silence and help you get your mind off of it. And she won’t judge or feel like she needs to fix it.

Sometimes being strong is knowing you need to vent to your beatches on face book. Or to just have them to check in with.

I know a bit about strength. Over the past 6 years I have had to learn. I thought I was strong long ago when I quit smoking and other substances. I thought I was strong when I was working and independent and taking care of myself. I thought I was strong when I left a boyfriend who wasn’t good for me or when I made it through some small crises. I really didn’t know what strong was back then.

I had to learn what being strong was. Let me tell you, sometimes strong isn’t even able to get out of bed, but taking deep breaths to get through the pain. Sometimes being strong is not crying in front of your child because he has seen enough tears and pain to last his lifetime. Sometimes being strong is sending your child to other family or even to Russia while you have your surgery so he doesn’t see you like that again.

To me, strong is the little boy in the PT waiting room with me who had burns all over his body and couldn’t use his hands, etc. Strong is holding your child’s hand while they are getting chemo. (hint: if you EVER want to feel better about your life, go volunteer in a child’s cancer ward. Those kids and parents are STRONG.)

People tell me they don’t know how I have gotten through or get through some things in life. I always tell them “you do what you gotta do.” But I think it’s more than that. I have learned that no one can be strong all the time – you have to sit back and let others take the wheel sometimes. I have learned that seeing that there are people worse off than me helps me. When I was hurting the most and at my weakest, I went to PT at the major university medical center in town. I saw people is such worse shape than me and it helped me find a better perspective. I saw parents taking their chemo kids for a “walk” outside to get some fresh air – in a wheel chair. I saw old men giving their dying wives ice chips. I saw people sitting quietly, crying, not knowing what to do next, then drying their tears and going right back into the doctor’s office.

“Give me the strength to accept the things I can  not change, the courage to change the things I can, and the wisdom to know the difference.” This is called the serenity prayer for a reason – it has helped me through the day more times than I can tell you. There have been days when I sat down and made a list of “the things I can change” and “the things I can’t change.” I crossed off the “can’t change” list as I meditated on accepting and letting go of those things. Then I got up and worked on the things I could change. It has made all the difference.

Sometimes strength isn’t what you have believed it was your whole life. We all have these images of strength in our minds. Superman, soldiers, dads, big brothers. Sometimes those things are strong, and sometimes strength is something all together different.