Archive for October, 2014

Better Them Than Me

 

Clowning around in 1998. Who knew what would be lurking ahead for us?

Clowning around in 1998. Who knew what would be lurking ahead for us?

Today there was another school shooting. As I listened to the information about what happened on the radio, Frances told me about the lockdown practices they have had at her middle school. I couldn’t help but think back to when I was in school….there was never a drill for a shooter or a thought about someone possibly coming into the school to harm us. Then I thought about the parents who worried about their children when they heard about the shooting and the parents who were unlucky enough to get the call that their child did not survive. Or worse, their child was the shooter. My heartfelt condolences to those families.

Then my mind drifted as I drove and I thought about what it would be like if that happened to us. Don’t we all normally do that? We try to put ourselves into the shoes of others….whether it is a tragedy or winning the lottery…we try to imagine what we would do.

Yet, I wonder, where do we stop imagining ourselves in someone else’s shoes and start thinking it will never happen to us? Isn’t that why people still smoke? Still ride in vehicles without seatbelts? Still drink and drive? Still mix alcohol and drugs? In typical human fashion, we all tend to gravitate to the “I am so sorry that happened to them, but it won’t happen to me” scenario.

I think every single one of us is guilty of this in some shape or form. We have empathy for others going through a horrible crisis, but we stop short of becoming petrified we will also fall victim to whatever atrocity lurks around us. Probably some form of self preservation at its rawest form.

Then, before you have any idea what is going on, you become immersed smack dab in the middle of some awful thing that is ruining your life and the lives of your family members. In my case it is Younger Onset Alzheimer’s. And it sucks. Big time. As I have mentioned many times, I have friends and family that are helping out and doing whatever they can to make this tough road a little smoother. But no matter what they do, they can’t REALLY help. They can’t cure Jim. They can’t stop the progression. They can’t save our children from losing their Dad. They can’t change the fact Frances’ and Brads’ childhoods will be encased in Alzheimer’s, Alzheimer’s, Alzheimer’s. They watch, they listen, they do. Then they go home and get on with their lives with their healthy families. They see us and are grateful they aren’t us. They know it could happen to them, but think it won’t.

I am not here to be a “Debbie Downer” but let me point out something to each of you: as you get older, the chance that either you or someone you love (parent, spouse, sibling, friend) will succumb to the horrors of a dementia is unbelievably high. Unless a cure, a vaccine or some type of treatment is found, we are all going to feel the excruciating pain and agony of dementia. And the financial burden. Which, in all honesty becomes so consuming you find yourself unable to focus on the person you care so deeply about because you are just trying to survive. And when your loved one is diagnosed, it will be too late to pour in money and try to have your voice heard. If you want to save them or possibly yourself, the time is NOW to do something.

Yes, we all feel like the bad stuff is horrific when it is happening to someone else and we are saddened, yet we are confident it won’t happen to us. What are you going to do when it does?

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posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)

Blessed to find lots of Rainbows

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Why I am so blessed when I am going through the roughest time in my life:

1)   I have two absolutely amazing kids. I try really hard not to brag about their awesomeness, but when I need to find something positive going for me, most of the time they are all I have. They love me unconditionally when I am not the best Mom and they help a tremendous amount around the house. They do well in school, participating in lots of different activities and are not slaves to the TV or Xbox. They love nature and care about our world and animals and they both love learning. They still snuggle with me in bed and give me hugs and tell me how much they love me. Yes, I am blessed in ways that money could never, ever buy.

2)   I have friends that have not forsaken me. I cry. I say inappropriate things. I get too loud. I drink too much. I forget things I am supposed to remember. I am now a moody, crazy woman. Yet, they still come around to check on me and look out for the kids and continue to ask how they can help. The world can be a big, scary, lonely place if not for the comfort of a friend or two. Even better: the friend who can be crass and make me laugh by saying the most politically incorrect statement that is funny because it is true. Not only do my friends take care of me, they bring Frances and Brad into their own families and show them the meaning of family and friendship and allow them to have second and third homes. Sometimes they magically appear to help with little things that need to be done around the house. The front yard weeded. The old paint cans disposed of. Lights hung in the bathroom. Sometimes they look out for Jim; offering to take him for walks and giving him rides to play tennis. Each little gesture adds up to enormous support that keeps us afloat.

3)   My children attend great schools. They have principals who care. Teachers who care. A place they can disappear from their “real” world for a while. Brad’s school is doing a fundraiser this Saturday morning. They have been planning this fun run for months. One night, about 3 months ago, around 9 o’clock there was a knock at our door. There on our porch was one of our neighbors, the PTA treasurer. He had come straight over after a PTA meeting to apologize. It seems this huge endeavor was inadvertently scheduled for the same morning as our upcoming Walk to End Alzheimer’s. I have been told by numerous sources, all of whom were present in the meeting, that when it came to light that the two events were coinciding and it was too late to change the race, everyone felt horrible. It was decided that I needed to be told right away and we needed to know that they support our cause 100%. To counteract the fact the school will not be able to participate in the walk like they did last year, they have discussed Alzheimer’s Disease on the morning announcements, they have made donations to our team, they made the t-shirts for the race….PURPLE (the school color is blue), and they have reached out to me over and over again to support our family and remind us how much Brad means to them. In a time that I am feeling the pressure and stress of our situation, there is hardly a way to express the comfort that comes with knowing others are looking out for our children.

4)   My children are active in sports and music and have teammates, coaches and instructors who help us whenever they can. I have had to rely on other parents to give both kids rides to practices or games. I have had to sit in the bleachers while Jim makes some inappropriate comments and search their faces to find they have (thankfully) no reaction. Sometimes, they see I need to be left alone and they let me sit in my chair, watching the game and allowing me to get lost in my own mind for a while. Sometimes I sit quietly, not even able to cheer, but I hear them, loud and clear, cheering for me. I have coaches who do not hold the fact I sometimes cannot get them to practice against either player (some coaches have been known to withhold playing time). Brad’s team is again participating in the walk for the second  year. They are very busy families, and yet, they carve out a precious Saturday morning to show us how much they love us and care about us. How do you thank someone for that?  You can donate to their team by clicking here.  Both music teachers patiently forgive me each time I have to call and re-schedule a lesson. They offer tickets to music shows and bring smiles of joy to the kids’ faces with jokes and the shared love of a good piece of music. 

5)   I have parents who drive 4 hours each way to come help me with the kids and Jim. They call me almost every day to check on me. They ask about the activities we are doing, they take the kids for pizza and ice cream and if needed, remind them of their manners and chores. I never have to worry about letting them down…they have loved me when I wasn’t very loveable and they have supported me when I wasn’t very smart. They help me “parent” when I need the break from being a parent. They listen without judgment. They hug. They cry. They show up and keep showing up. They are above all else, my rock.

6)   I have a home to protect us from the storms. This home is located in a village that surrounds us with support and help.

7)   I have a job.

8)   I have my health. As I watch Jim decline, I become more grateful for my own healthy mind (although there are times that may be debatable) and my own healthy body. I worry my health will suffer with the stress I feel on a daily basis, but I am hopeful that I will be strong enough to make it through.

9)   I have new friends. I have made dozens of new friends through our advocacy for Alzheimer’s Disease and through my blog. I have heard so many stories and had so many words of support sent our way I have learned without a doubt we are not alone in this fight.

10) I am alive. I am blessed to just be awake on this side of the dirt beneath my feet. I sometimes forget to cherish the fact I am sharing in the lives of my children, my brother, my parents, my friends and Jim. There was a time in my life I was worried about living long enough for the kids to know me. Now I am grateful they do and I want more. I want them to know me with their children.

Sometimes it is extremely difficult to remember how blessed I am. How blessed our family is. Sometimes, I cannot see the sunshine in our lives but I am only focused on the black cloud I seem to be immersed in. Sometimes, after the rain shower, a rainbow emerges to light the way.

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posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (7)

Sink or Swim Time

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Yep. I am still in a bit of a funk. I am fully aware of my melancholy, yet I just can’t seem to pull myself into a brighter mood. There always seems to be something going wrong or something getting broken, misplaced or needing to be done (house painted, porch replaced, etc.). I swear, sometimes I think there really is a dark cloud that lives over me. I could really use a ray of sunshine. Not just for a moment, but for an extended period.  It is a never ending cycle and I just need a break. A break from decisions, from work, from being a “single” parent, from worrying about Jim and his future. While I say this, a tiny voice is on repeat: BREAK? WHY SHOULD YOU GET A BREAK? YOU HAVENT EVEN GOTTEN TO THE REALLY HARD PART YET!

Yep, I know what is headed our way and I sometimes wonder if that makes everything personified. Even so, I am desperate to raise the children in a positive environment. Yet, I am not sure there is a lot of positive vibes floating around when I am such a grump. I know there are some people who follow our story who have lost loved ones to something other than Alzheimer’s. I think when you lose a loved one, it is a universal understanding and bond that is formed with others that have gone through the same pain. But there is something about Alzheimer’s Disease that seems to be a little crueler. I do not, in any way, mean to disrespect those that have lost someone to cancer or any other sickness. It all hurts. It all makes you lonely and sad and the loss itself is the same. But I think the costs associated with the long term care, the frustrations of “babysitting” your spouse or your parent (or sibling) for such an extended period of time, the pure hopelessness felt every time you visit the doctor and there is no treatment plan therefore no hope, the mourning that is done day in and day out and then the overwhelming lack of time to mourn as you are embedded in the routine of worry, exasperation and financial struggles that can ruin your family forever. I realized just a few days ago that part of my problem was the fact I need time to let go of Jim and to lament the loss of our marriage, our family, our dreams, our relationship and come up with a plan to help the children do the same. But I don’t have time. I am not allowed or able to take the breather that usually comes with the loss of a spouse. Because I haven’t actually lost him. He is right here. Playing tennis. Eating dinner. Walking the dog. But he isn’t. He is so not here. And I am so not able to truly allow myself to let him go. So here I am, treading water, wondering how long I can keep it up.

I need help. Help fighting this war. I need to know that there is something better coming. My husband is dying from a disease that has no cure and no real treatments. It runs in his family. I am asking EVERYONE to help us. What can you do? You can write your Congressperson. Don’t ask them for more money for Alzheimer’s research, DEMAND it. Demand they listen.  Here is a link to a previous post about why you should help us advocate. Please ask them to support the Alzheimer’s Accountability Act. For more information click here. Then follow up with them and let them know you are paying attention!

When I follow the news and listen or read about proposed spending on things that I just don’t feel are as important as finding a cure for a disease that has been around over a hundred years and yet we are no closer to keeping someone afflicted alive longer or providing a way to cure it or prevent it all together, I just want to scream. Not only are we not providing what is needed for the patients, we are doing huge injustices each and every day to caregivers. Caregivers are getting worn out, used up and kicked to the curb over and over again. Each person who is responsible for an Alzheimer’s patient, must not only figure out finances for care and lost wages, actual care to be provided, often times losing their own jobs, and they must try to navigate through mounds of paperwork and technical terminology to make sure every “i” is doted and “t” crossed so they MIGHT get some sort of help. It is a disgrace how much burden is added to people who are struggling to come to terms with the fact that someone they love so dearly is dying.  Then, to add salt to the wound,  they are forced to prove they can’t pay for care or told they did something wrong and must re-submit the same paperwork they have already submitted 2 times or they must spend down the retirement they need to survive themselves in order to get help with care for their loved one. IT IS INSANE HOW THIS SYSTEM IS SO MESSED UP!!! None of this process makes any sense and yet, here we are, The United States, the leader of the free world…..definitely NOT a leader in the fight against Alzheimer’s Disease. Why? Can someone please explain to me why this isn’t more of an urgency and why we are having to fight so hard to be heard? Maybe then I can relax and I can have faith that things will be better for Frances and Brad.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (14)

An open letter to caregivers

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This is an open letter to all caregivers. I want to answer some of your messages you have sent me. I apologize for not being able to respond to each and everyone individually, but I want you to know that there is usually a common theme in all of the notes I receive. I also want you to know how much I appreciate you taking the time to share your stories and to send me tidbits of info. and advice. I hope this blog helps you on your journey.

I am not in a super good place right now. I go through spurts. Sometimes I see a positive future and feel like I am making a huge difference. Other times I only see how awful our lives are right now and how terrible they will be for the foreseeable future and beyond. I think about watching Jim decline and dealing with the financial woes, the emotional upheaval and the overwhelming sadness that envelopes us. I sometimes scream at the top of my lungs, “I can’t do this anymore.” I never say it isn’t fair, I just say I can’t do this anymore. When in reality I can, I just don’t want to.

I am often told to take care of me. Very good advice. But, I am not sure how I am supposed to do that. Am I supposed to quit my full time job that causes me stress? Then I could exercise daily and have time to fix healthy meals and time to take naps and have leisurely lunches with friends to make sure I am relaxing. Am I supposed to hire someone to come watch Jim and take over the household? I understand the sentiment behind the words. People care and sometimes the only thing they can offer is encouragement to take care of me. Easier said than done, knowing I need to follow the words of wisdom. Each of us needs to heed this advice, once we figure out how.

I have realized a few things about people. One being that some people just suck. Big time. I am not trying to be negative here and I am not trying to call any one particular person out. But I read story after story of promises not kept, hurtful words said and the complete isolation some caregivers have come to face. You know what? Even with all of the wonderful support and help I have received, I have the same things happen. I try really, really, really, really hard not to dwell on such things. Most of the time I am able to put a positive spin on different situations…..like when the person “bought” a piece of furniture from us, in the process we ruined our kitchen countertop moving it out of our house, and they never paid. When the kids asked me about it (many times) I explained to them it was a great $50 education. When Brad said we should call the cops because that is stealing, I reminded him that sometimes it is better to learn a lesson than to worry about how you learned the lesson. Did I mention how hard this is sometimes?  There have been “friends” who have completely disappeared. I just don’t write about them in my blog…but I have had it happen too. I have the friend, who I once was close to, even taking a weekend vacation together, who now sees me and doesn’t speak unless I do first. You are not alone in this. I want to remind you to not focus on those that have abandoned you in such time of need, but to appreciate even more those that have surrounded you in love. If you look hard enough at all of those encouraging you and helping you, the vanished “friends” will fade from your view and your worry all together. This takes an enormous amount of effort. Just like everything else, sometimes the vision is easy and sometimes not so much. Focus on all that is good, even when there doesn’t seem to be much.

Last week I had a really, really bad week. For lots of different reasons. Then I got a terrible scratch on my shin from the cat while I was trying to give him flea medicine, I burned my arm quite badly AND got in a teeny tiny fender bender. ALL IN THE SAME DAY. It was also the same day Frances won her student council election and the same day a mysterious box of chai tea (I don’t drink coffee) was left on my porch. So, at the end of the day, I could focus on the 3 horrible (and a little painful) reminders of how bad my life is right now, or I could celebrate how awesome it is to have a friend who would go through so much trouble and a daughter who worked past her fear of losing and became class president. Again, not easy, but one would take me down a dark path that would only prolong all of the bad things and one would help me raise my children in a happier home. The choice was mine. This is not to say that sometimes I don’t sit and focus on all the bad, but I try to be cognizant of the good too. I think I am really just having to train myself. Otherwise, I am scared of where I will end up and in turn where my children will end up.

Some people vanish only to appear at just the right moment. Just when the small circle of friends you feel like you inundate way too much with your sob story have done their part and you are scared if you call them one more time it will be too much,  a random note, e-mail, dinner, invite, hug, phone call will happen almost miraculously from a “lost” acquaintance.

If you can picture viewing a moving black circle from above. At one time I felt like I was in that circle, but it was HUGE. Wide open. Ready to go and conquer the world. Anything was possible and there were lots of other circles coming and going. Some got attached and came along for the ride. There really was just lots of circles always around. Some came and went. Through the past year or so, I visualize that circle as growing smaller and smaller, with fewer and fewer other circles in view. Just a few. And as my circle grows smaller, my mindset changes and my focus changes. Frivolous things become just that, frivolous. Mean, disrespectful, untrustworthy people become easier to spot. Good, reliable, steady comrades become more precious than gold. I worry terribly about the friends I have getting worn out, tired and bailing if this situation continues on for years and years. That is why I try really hard to “spread the love” in terms of who I call and how often. It is understandable. I ask you to remember back to before the diagnosis. What kind of friend were you to someone that went through an ordeal? Did you think about calling or stopping by, but you just didn’t know what to say? Did you intend to but never had time? That happens. Most people have the best of intentions. Often times they just don’t know what to say, how to say it or when to say it. I can tell when I see someone who is uncomfortable, not because they don’t care, but because they do and they don’t know what to say. Give those people a break. Start the discussion. Let them know you have missed them and if they want to help, they can just come and sit with you. Maybe they don’t want to hear every detail of how bad your life is now, but they just want to be your friend. Let them. That is who they are and how they can help you. Don’t try to force them to be someone they aren’t and in the meantime you will re-kindle a wonderful relationship I am sure you really need at this time.

I give you all of these words of wisdom in the hopes that I will be able to give you a different take. It is hard. Hard to see outside of our window of despair. Just try. Then let me know how it goes. I will do the same.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (13)