A Broken System Will Not a Broken Woman Make

For the first time since I started this endeavor I am writing directly on my blog without taking the time and energy and forethought to edit and proofread and ponder over my words before putting them out for the world to read. I am too tired. Too overwhelmed. And frankly, too frustrated and mad. Mad at our system.

Don’t get me wrong. Our friends, neighbors and even strangers have reached out over the past week to offer guidance and help in many forms. I am grateful beyond imagination. They have saved us and I really, really am humbled. But ultimately, our family is still left hanging on a ledge and hoping a huge gust of wind doesn’t blow through.

Jim is home. I know you have been worried and you have been praying and you have sent me your advice. Thank you. His sisters were able to drive him to Delaware and a very special friend rode with me for the 11 hour round trip to pick him up and bring him home. We didn’t know what would happen and I am pleased to tell you the ride was fine. He is fine.

Well, he is hard to understand. He needs help with showering and shaving and getting dressed. He needs verbal cues with washing his hands after using the restroom. He is confused many times and still insists he had to “beat the shit out of two guys”. But he is calm and his usual passive self. Obviously, I cannot leave him alone. Which is why I had to have a friend come stay with him the short time I needed to leave to go visit my counselor. Who listened and then stared at me, momentarily speechless (I don’t think this is a good sign).

I am going to try to do a quick overview of the past week and why I am mad and frustrated and feeling our system is broken. While Jim sat, many hours away, in a psychiatric unit, I called and begged for a way to get him safely home. At the time I started this process, we weren’t sure him riding in the car would be possible and an airplane ride was definitely out. Insurance would not cover a medical transport. So, he had to stay much longer than he should have. And I am ashamed to say I had very little time or mental capacity to really focus on him, how he was and where he was and think of him emotionally. I was too busy being focused on the paperwork and the problem of figuring out what to do. If he had had a stroke or a heart attack, I would have been able to rush to him, focus on his care, his recovery and not think twice about what to do about care when he was back in Virginia. There is nothing I could ever put in writing that will evoke for you that guilt of knowing I was more worried about other stuff than about him. I didn’t rush to be by his side because I had to think about what to do when he came home. This will haunt me for a very long time.

Once I realized I would have to get him home with no financial help, I had to decide what to do with him when he returned. Would he be ok at home? Would he get violent again? Is this the time to put him in a home, making it an easier transition? There were endless questions constantly running through my mind. All the while, our 11 year old son sat idly by waiting for me to get off the phone or off the computer so we could spend some of the quality time I had promised him weeks ago. Time that unfortunately didn’t really happen. Again, the guilt and the sadness cannot be conveyed.

Knowing Jim is retired Air Force, many have suggested the Veteran’s Administration. Jim unfortunately thought that too. It was always his understanding that if he put his 23 years in, he would be taken care of later. Granted, he always thought it would be when he was much older, but he always told me when he got too old and cranky for me to take care of to just stick him in a VA home. How I wish this was so easy to do. Jim does not qualify at this time (that I can find) for ANY VA help. His disability is not service related. He is not over 65 years old. He did not serve in Vietnam. He is not a Gulf War Veteran. Our family makes over $26,000 a year. I checked, re-checked and then checked again. If anyone knows anything different, please feel free to share the magic pass code. I could really use it about right now.

I also applied for Medicaid. Although I haven’t gotten the official word back yet, our chances of getting approved are pretty slim due to our income. Please don’t think we are living high on the hog. We are a paycheck to paycheck family. We own one car. One 1,600 square foot home. One TV. Yep, I splurge sometimes and get Starbucks and I have an iPhone that I bought for my job at the time almost 5 years ago and we’ve taken some nice vacations over the past couple of years. Trust me….this does not mean we can afford care for Jim. Unless we take EVERY SINGLE PENNY that we have coming in each month (I’m not even sure that will eventually be enough), then we could afford his care. Of course, at that point, there would be nothing for myself or the kids. And by the way, I will also have to spend almost all of the retirement and savings we have. So that whole rule about having 6 months salary in savings in case of an emergency? Gone.  Then we could have the state pay for our healthcare, our home, our food, our heat and even our children’s braces. And, I will not have money saved for my own retirement therefore I will also need assistance when I am older. So, to keep from using the government to help with Jim’s care in one program, our family will be reduced to using multiple government programs to stay alive. Then I see that our government is trying to cut disability payments next year by 20%? Really? And I am supposed to stay calm, cool and collected?

I cannot possibly explain the amount of frustration this causes me. I do not feel we are a family who is trying to take advantage of the system. We are in a unique situation, but because of rules, regulations, guidelines and black and white protocols, we are stuck right in the middle. We don’t make enough to pay for care, yet we make too much to receive aid. The programs currently in place are for retired people who can sell their homes and use up savings and retirement to pay for care, or they will then qualify for government assistance. It is not set up for middle aged families who may need that retirement later and who have young children at home and cannot sell their home to pay for care. As a disclaimer: Medicaid does allow us to keep the home and the car. The previous statement is in reference to who the people had in mind when they wrote all of the guidelines for the program.

Let me give you an example of a conversation I had this week. It will hopefully show you how much I feel like I have been a hamster in a wheel…..

While at the VA hospital, meeting with a Veteran’s Representative, I was asked for a letter from when Jim retired. It was his disability rating letter. I didn’t have it. The very kind gentleman told me I would need a Power of Attorney in order to get a copy. I pulled out my copy and tried to hand it to him. “No, you need a VA Power of Attorney,” he says to me. I look down at my copy and in bold, capital letters at the top of the very first paragraph it says MILITARY POWER OF ATTORNEY. So, I try handing it to him again and tell him it was done on a military installation and is a military POA. “No. It has to be a VA Power of Attorney. That one won’t work.”   Are you kidding me? This, while Jim sat in Connecticut, waiting for me to figure out something to help him. After all the years he served and thought he would be ok and not a burden to his family or anyone else. After I sat and cried for a moment, I asked the same kind man how I could raise my family on the $26,000 a year they expected in order to quality for Aid and Attendance? He very quickly told me that combat war veterans were coming back and living on $8,300 a year.

And what could I say to that?

Now I am just treading. Keeping my head barely above the surface and hoping all of the red tape, regulations and bureaucracy doesn’t pull me under. How am I expected to take care of two children and Jim with no help? If I was independently wealthy, no problem. But I am not. We are a middle class family trying to find a needle in a haystack.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (26)

Survival of the Fittest

Jim, Frances and Brad enjoying skipping stones on the Maury River in Virginia. June 2015.

Jim, Frances and Brad enjoying skipping stones on the Maury River in Virginia. June 2015.

It has been 6 long years since we first started figuring out something was “wrong” with Jim. To some, this will seem a very minuscule amount of time. For us lucky ones, living and enduring the torture, it will seem an endless amount of time.

When a person loses a loved one, they are forgiven their lapses of judgement. If they forget to say “thank you” or don’t have their home kept up or they don’t seem themselves…it is forgiven and they are encouraged to keep moving forward. If they get too drunk too often, they are forgiven. If they seem short-tempered or completely out of it…they are forgiven.

But I ask myself daily how much time and indiscretion should I be allowed? Will I be forgiven for being a louse for 20 years? When is enough enough?

Jim is not dead. Jim is not alive; not in the sense of who he was, how he once lived and his being. His great attitude and his constant desire to continue to help is amazing. His sense of humor still shows at times and takes us all by such surprise, it is a present wrapped in a perfect package. So, he lives, but as a new entity in our world. One constantly changing and now needing more and more help. I am so grateful for his fantastic way, his attitude blesses us even as his mind fails him more and more. I grieve him. I have lost him on so many levels, so many times and our children have grieved with me. Our friends have cried with me. Jim has cried. He is losing many cognitive abilities.  Almost daily something new disappears. Handwriting. Speech. Dressing. Hygiene. Emotions. I stand by helplessly beholding the changes in him, yet missing the strength I would normally steel from him. I no longer have his support, his guidance, his assistance with the kids, the house, with finances, with life….yet, I am told all of my shortcomings are understandable and I am encouraged to drink more, speak freely, be the woman who has lost someone, let myself go and suffer the pain….yet I wonder how long can I sustain this? How long am I allowed to be grieving, to be less than I should and can be?

I am better than the person I am right now, yet I cannot manage to find my path to ME. The me Jim helped me become. The me WE were. I am unable to concede I must figure out who I am alone, with him sitting by my side, while searching for and needing the me I must become without him. The way I miss him is still raw, though I have become more accustomed to being the sole “adult” in our home.

The road I travel at the moment is a most treacherous one. I can slip and become a lost soul that will somehow be forgiven. I have an excuse to be less of a mom. Less of a wife. Less of a woman. Should I succumb to the darkness the lurks each day, it will be said I was a good person, but it was all just too much for me. There will be excuses to explain my fall. But I, I, do not accept those excuses. I do not accept the opening to allow myself to be someone I know I would abhor under normal circumstances. I am fighting not to lose who I should be to hard times, difficult circumstances and a pain that could kill a weaker soul.

I face my demons and my struggles each hour of each day. I struggle to make the right decisions solitarily. I hesitate to move onward while holding the hand of the man who pushes me forward as he holds me back. The constant metaphors in my life shout out to me constantly. I never know if I am making the right decision or if I am not making a decision I should be making or if I am just failing our family, one choice at a time.

I know Jim’s disease and decline and eventual death are NOT my fault. (Although there are times I have survivors guilt, but that is a whole different chat) But the effect of everything relating to our journey lies squarely on my shoulders. There is not enough beer in this world to lesson that burden. The fact my children witness their father dying a little more each day does not slip past my view. The fact I am responsible for not only their physical wellbeing, but their current mental health and their future mental health and their daily meals and their education and the normal parental scope of dealing with life in the adolescent years and money issues and friendship issues and something as minor as what to wear and who isn’t speaking to me and who didn’t do something and I really have to clean my room and do the dishes NOW???? There are times I just want to walk away. I just want to disappear into the night. But I have nowhere to go. There is nowhere else I would rather be. I want to be here with the two people on this earth who think I matter, who they look to each and every day to love them and make them feel as if the world doesn’t completely suck. It is hard to see when immersed in the trenches, but when I am really downtrodden and at a low of the low points… somehow I am able to see the miracle of the love my children and I share. The closeness, the stories, the history and the promised future. I can see the need they have for me to be here, even if I don’t really feel like it. Even if I am hurting in my adult way of missing a spouse and partner. They are missing a Dad, a parent, a confidant. It is unacceptable for me to put my own needs ahead of theirs for too long. Yes, 6 years is starting to feel like a very, very long time. But our journey has no end. Even when Jim is no longer with us, we will still be alone, without him. We will struggle to recall his stories and keep his memory alive. The trick is to start this all while he is still living, without allowing the weirdness and the emptiness to keep us from grieving. We will mourn, and we will cry and share our stories and we will live in a holding pattern for as long as we can. At some point, we will have to let go. I don’t know when that will come. I don’t know if I can manage that long. I hope I can. This is a most difficult path and a most painful journey. I am not always sure I will outlast the fountainhead. If I don’t, my children will have learned the most valuable lesson of all…survival of the fittest.

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)

Doctor Day Sucks!

Jim and I. Dec 2014.

Jim and I. Dec 2014.

Today was DOCTOR DAY. I think in general we usually look forward to going to the doctor, even subconsciously, to get healed. Healed from whatever is ailing us. Healed from something we may not even know is wrong. Healed from things that hurt a little and things that hurt a lot. Eventually, with the help of the almighty physician, we are healed. Unless we have something that they just can’t heal. ALS. Huntington’s Disease. Lots of types of cancers. Alzheimer’s Disease.

Today, I saw the pain of not being able to help us on Jim’s doctors’ face. And in his words.

To start with, they called Jim back without me to do the mental exam. I knew it would be lower than the last visit nine months ago, but I didn’t realize quite how low. When they called me back, I could tell the nurse, who we always see, was a tad “different”. I knew that she had seen the difference in Jim. I knew it was bothering her.

When the doctor came in, he was his usual pleasant self, but when we got down to business, he fumbled over his words. He was struggling, because as a physician you are trained to heal. You are trained to find out what is wrong and to fix it. He can’t fix what is wrong with Jim. Jim went down 6 points on the memory exam. I looked at the drawing of the clock which is always part of the exam and I saw there were no hands and the numbers were wrong. My heart sank. Even though I know he is declining, seeing it in black and white is hard. Hard. For ALL of us.

When I entered the room and it was just Jim and I, he started to cry. He knew. He knew he hadn’t done well on the test. He isn’t far enough gone to be completely oblivious. This is so painful to watch. This wonderful man, crying and realizing what is happening to him and not being able to do one single thing to make it better. He told me he wanted to move away. I asked him why. “So the kids don’t have to see me like this. I don’t want them to see me the way I am going to be.” It took every ounce of self control not to burst into tears with him. I saved that for later.

I recently went for a walk with a friend. During our hike, we discussed Jim and lots of different sides of being his caregiver. Part of the conversation went like this:

Me: I don’t really feel sorry for myself. I think sometimes I come pretty close, but for the most part, I don’t think I am.

My friend: Really? I thought from reading your blog that you were pretty sad most of the time.

(At this point I was a little surprised since I didn’t know she was keeping up with this blog)

Me: Not really. Yeah, I get sad, but I can’t stay that way all the time. It would be awful for Jim and for the kids.

My friend: You don’t feel like you feel sorry for yourself?

Me: No. I feel sorry for Jim. I look at him and I just really feel sorry for him. And I think about the kids not having him for a dad. He was such a great dad and they won’t remember all the awesome things he did with them and for them. I am a much worse parent and it’s actually sorta sad that he is the one leaving them and not me. He would be more patient and teach them so much more. I get really sad thinking that they won’t have him around and they will watch him decline more and more and it is taking over their whole childhood.

My friend: You are a great parent. You shouldn’t say that.

And then we walked. Because, what else was there to say?

Back to the doctor visit…. The doctor recommended we try Namenda and the Exelon patch again. As I have written in past blog posts, we have tried EVERYTHING and I am not going to rehash why Jim is off all meds at this time. But, I believe we are going to give them another try. He told us that sometimes when a patient is further along and showing increased symptoms the medications can show help in lessoning some of the symptoms. But of course, they aren’t a cure. As the doctor spoke and Jim listened, he started to cry again. He understood he was hearing that he is declining. The doctor told us we wouldn’t do the memory tests anymore because there wasn’t a purpose any longer and it was causing stress. He also told us we didn’t need to schedule an appointment for a set amount of time. We would start the medications and call in as needed. There is no point in seeing him as Jim declines because there is nothing else he can do. This is not to say we can’t come see him and won’t, but there is no set six month or nine month time frame anymore. Just whenever we feel we need to see him.

Whew. I am crying as I write these words. My heart aches for not only Jim, but all of us who travel this journey with no help. No way to fight. No hope.

I am not a scientific person, but many times I wish for a scientific answer. How long does Jim have? What trajectory is he on with the decline he has shown? It may seem a little morbid to some, yet others will completely understand. I think it is human nature to want to know how long you will have to endure a form of torture and pain. When will this be over? When will Jim not be in pain? Actually, that is more of a clichéd expression. Jim isn’t in pain. Only when he realizes he is leaving his children. Most of the time, he is happy go lucky and in great spirits. He has a great attitude and is very pleasant to be around. He isn’t angry or sad or even moping around. He has the best attitude he could have and I am so proud of him. So when I say something about wanting a time frame, it isn’t because I want him to be gone, it is because I am trying to plan, trying to figure things out, trying to adjust and have a concept of what lies ahead. I believe people do this in all aspects of life; whether it is planning for high school, college, their first job, marriage, having a child, moving to another country, moving out of their parents home, changing jobs, etc. We are always looking ahead and asking for time lines.

It was mentioned that Jim was declining faster than some, but not as fast as others. I guess you would say he is somewhere in the middle. Not a fast decline but not a slow one either. I didn’t ask the doctor about a time frame. He wouldn’t be able to tell me. Alzheimer’s Disease works so differently for each patient. And Jim is very healthy otherwise. I know this is a long haul. I can handle it. We all can handle it. But I hate that he is having to and I hate that the kids are having to. I hate that my friends have to take care of us and I hate that my parents must use up so much of their retirement years rushing to help us. I despise being the damsel in distress. I know Jim despises it too. He was our knight in shining armor and unfortunately, he knows he isn’t any more.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (22)

I appreciate what I have…but Miss what I don’t!

i-am-thankful-for-my-struggleThere is a little boy who is dying tonight. He is two years old and he has cancer. I don’t know his family, but I still hate what their family has endured and what they will continue to endure long after their precious son has left them. I see updates on Facebook from the family. We have mutual friends and as I have watched their fight and witnessed from afar their heartache, I have pondered life and the unfairness that happens in our universe. I see Jim, struggling to keep his dignity and to stay a dad as long as he can. And I read stories about parents losing their children. If I could somehow make it so that I had to endure the frustrations and constant sorrow I am faced with each day to save a child, I would. But as much as I wish my suffering and Jim’s suffering could abate the pain felt in another home, I know it won’t. I know I will continue to watch as Jim fights his own battle the best he can. I am only a witness to the things I recognize as more heinous than watching Jim succumb to the plaques and tangles multiplying in his brain in another family…. Losing a child would be one of them. I am so, so grateful for Frances and Brad and somehow, dealing with the pending death (albeit not tonight or tomorrow) of my spouse, I cannot help but be so grateful for having them with us and in seemingly good health. It isn’t lost on me that I may be suffering a loss, but it could be worse. To the parents who are losing a child or who have lost a child, I am so sorry. I wish I could somehow take the suffering our family must endure and replace yours. I suppose it would make all that our family is going through worth it….if we could find some good in our pain by easing the burdens others face. I sometimes wish Jim would just die. Now. I don’t really want him to die, but as I have mentioned several times, I don’t want to be part of what is coming. It is this unbelievable awful thought process: I don’t want Jim to die, but I don’t want him to continue to decline in cognitive abilities and don’t want his children to watch him suffer in a way that they can’t possibly change or help in any way. I know that Jim doesn’t want to become the person he is becoming. It can cause so much internal stress thinking about it all, the best way to handle it can be to shut down. But dementia patients need you there for them for years, so you are not allowed to shut down for long. You must stay in the present, to help them and in my case, help our children. The irony cannot be missed: my partner, my go-to person is the patient. The stress and the heartache and the gut wrenching thoughts would be eased under normal circumstances because Jim and I would discuss them and he would be my sounding board and my help. I have come to realize with much clarity that even marriages in troubled times have two partners. Partners that can communicate. Partners who can help with whatever needs helping; dishes, yardwork, decisions on finances, disciplining the kids, vacation ideas, what to do with free time, what to watch on TV, what to do about life situations that happen with friends and family, co-workers, cable companies, etc. I have opportunity to sit back and watch relationships now with a different thought process and a much different appreciation. Even my friends who complain about their spouses (and as they do they usually apologize to me and tell me they shouldn’t be complaining to me of all people) have to recognize the simple pleasure of having a partner who is there, in the moment and who can carry on a REAL conversation and even if they are driving you crazy with the point of view they have, at least they have a point of view. At least they can listen and comprehend you are upset or need to vent or have ideas that they are helping you mold into realism.

The big question is would I suddenly appreciate Jim if he miraculously went back to the man he was 10 years ago? Would I find the fact he was able to be a husband and a father in such a magnificent way enough? Would I be content and appreciative? I certainly like to think so.

Since I am reminded daily there is no cure and there are no treatments that can correct his decline, it is a moot point. But I think it is reason enough to pause and appreciate where he is now and how much we have to be thankful for. Starting with two amazing kids who continue to bless us with love and lots of great memories. And a man who doesn’t give up and who tries his best, each and every day.

Frances and Brad in Alaska, July 2014.

Frances and Brad in Alaska, July 2014.

 

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)

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)

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)

When will we be NORMAL?

Brad helping with dinner tonight since I didn't get home from work until very late.

Brad helping with dinner tonight since I didn’t get home from work until very late.

Frances has mentioned several times (remember, she is 13) that she just wants to be “normal”. Yeah. So do I.

I don’t want to be consumed by Alzheimer’s Disease 24/7. I really don’t want to be constantly asking for and accepting help from so many. I don’t want to watch my husband, my soul mate, the one person who actually wants to put up with my shit turn into a shell of the man he once was. Sometimes I watch him and I feel so sorry for him. He has the outward demeanor at times of an 85 year old but without all the fun of having lived those productive and memorable years.

Watching him in the hospital last week was horrible. Just horrible. I know there are millions of people who have witnessed such pain and have felt such sorrow, but when you are there, in the moment, living and breathing the confusion and the depravity of this illness, it becomes REAL. Real beyond “knowing” what is coming. It was here. I was smack dab in the middle of a storm and I was not prepared or ready. I am not sure I will ever be ready.

Jim has bounced back to the point of being about at his baseline. Modern medicine really is amazing. To see him two weeks ago not even able to stay awake for longer than 5 minutes or to know where he was or who we were and now being able to stay home alone again is incredible. The biggest issue so far has been the disappearing dog food bowl that was found 24 hours later in the cat food bucket. But this snippet of what is to come made me realize that there really is no preparing for this.

It has been a rough ride all the way around. Rough on the kids. Rough on our friends. Rough on our family. Rough on me. Rough on Jim (I am going out on a limb here because he really doesn’t seem affected at this point.) I am aware enough to know that this same type of thing could happen over and over. I worry how it will affect the kids. How will it affect the desire of friends to drop everything to rescue us? How will it affect me? I can tell sometimes that I am immune to the situation and show little emotion at times that I should.

During all of this, I have realized how completely broken many aspects of our healthcare system are. You read articles about this, but when you are told that because your mentally impaired husband doesn’t have a physical ailment, he cannot qualify for home health aid or Medicare won’t continue to cover rehab and you can’t find any programs for someone his age (52) because he is too young. Well, I wish someone would tell his Younger Onset Alzheimer’s Disease that he is too young to have it. Wouldn’t that be nice?

So let me paint a picture for you: my husband has a mental disease that is not going to get better. We have two children, ages 10 and 13. I work full time. We are middle class. (which means we do not qualify for programs that are based on income) He is retired military and for those of you in the know…I have started the process of trying to qualify for Aid and Attendance (OMG, the paperwork, the waiting, the formula to try to figure out if we will qualify) It seems that each day I find out something else to worry about and then I must make a conscious decision on whether or not it is something I have control over and therefore something I can try to mentally and emotionally ignore. Jim is for all intents and purposes no longer a participating “Dad”. Before you get all upset about that statement, think about what a Dad does in the sense of the word and think about if someone in the early stages of dementia can do those things. Oh, and walk a mile in my shoes. Then you can say something. So, I am responsible for 3 other people besides myself. Plus the bills. Plus trying to keep up with laundry, housework, yardwork and meals. Plus my job. Plus the kids schedules and schoolwork (yes, I forgot to sign an agenda last night). Plus the myriad of things that any “normal” family faces each day. I have people tell me all the time they don’t know how I do it. I have come to realize that whatever we are each faced with at any given time is what we can do. For some, it is dealing with an ex that is dragging them through the courts again. For a few, it is figuring out which contractor to use for their new addition. For others, it is dealing with a teacher that seems to be treating their child unfairly. Whatever is causing stress, that is your thing at that point in your life. This doesn’t mean it will always be the only problem you have. We all have our own difficulties to endure. Thankfully, they come in a variety of sizes and at different times, which allows us to shelter our friends when their burdens are much worse than ours. Right now, my burden is making an impact unlike many deal with. But I can weather through with the help I receive. Someday, I hope, I will be on the other side and I will be offering shelter to a friend who will be needing refuge. In the meantime, I am struggling to find my way through all that seems to be coming at me at once. My priorities are changing. My focus has already changed. My determination and grit are still just as strong as before. Only now I don’t have my partner to help me. I do have unbelievable parents. I am surrounded by wonderful friends.  I have two children who amaze me. They are not perfect by any stretch of the imagination, but my goodness, they sometimes step up in ways I never would have when I was their age. And it makes me humble and it makes me proud.

Yes, I want to be “normal” too. Whatever that is. A simple life with my biggest worry being what I am fixing for dinner or what we are doing that weekend.

Frances walked in the rain tonight while I was at work to get me a delicious cupcake. She bought it with her own money and decorated the box for me.

Frances walked in the rain tonight while I was at work to get me a delicious cupcake. She bought it with her own money and decorated the box for me.

 

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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 (11)

A Day in the Life

 

Frances and I  April 2002.

Frances and I
April 2002.

“Um…. I…. Um.…Did you….What am I….. Uh… I….uh.”

“Yes, Jim. Go ahead.”

“Uh, the front. Uh…. do you want me to….ummm….the front.”

“The front yard?”

“Yes.”

“What?”

“Uh, the uh part like a fur collar….Uh. Mmmm. By the flag. Like a collar. Uhhh…fur collar around.”
“The boxwood hedge?”

“No.”

“The liriope?”

“No.”

“The part,….uh, the part….fur. Fur collar. Um….Around……Around the uh, around the front tree.”

“The liriope is around the tree. That must be what you are talking about. The stuff that looks like long grass?”

“Yes.”

“That is liriope.”

“Do you want me to trim it?”

“No. You do that in the winter. You did it in Feb.”

“Oh. Ok.”

Another conversation that shows Jims’ decline. Another heartbreak. Another slip into a future that I am not looking forward to and don’t really want to live through.

Another frustrating situation for both of us. He is frustrated trying to explain himself and I am frustrated trying to understand him. The kids are frustrated. We joke that it is a game of charades, but you can only laugh so much at the fact your father cannot explain a simple thought to you.

I am in a constant state of despair. I just don’t have any answers and I don’t have an easy way out. I don’t see anything that will make this plight an easy one. An uneasiness seems to haunt me. Finances. The house. The yard. The kids. My job. Jim. His decline is on a more steady course than in past years. It is noticeable. It is impossible to ignore. There is a feeling that stays with me now; it is unshakable. A feeling of being in trouble. Like when I was a teenager and I knew I had done something wrong and it was only a matter of time before my parents found out and I would soon be in trouble. No matter what I am doing, who I am with or where I am, a sense of imminent doom looms overhead.

Brad and I  April 2008

Brad and I April 2008 Thank you Patti Brown for this perfect photo.

What have I done? What can I do different? How can I get out of this and save us from the terrible future ahead? What am I doing wrong? Should I have gone back to work sooner? Should I have saved every penny we ever made? How am I going to take care of me and the kids? How am I going to take care of Jim and work full time? What kind of person will I be when all of this is over? Will it ever be over? What kind of person am I for thinking this? I am horrible. I should not be thinking about me and my future. I should only be thinking of Jim and the kids. But, what am I going to do about the kids? What if the kids get this one day? Oh God. No. Please. Please don’t let my babies get this. I couldn’t take it. I would rather die than watch them succumb to Alzheimer’s. I might as well quit right now. I have to do something. What can I do?

Talk Karen. That is about all you are good at these days. Talk.  Get everyone you know to write their Congressmen. March up to D.C. again and don’t leave until they have a cure. Move to D.C.  Start a war like they have never seen. Wait. I can’t do that. I have to take care of Jim and work and take the kids to practice. Ok, then get everyone else to do that too. Will they? Will others care that my kids, my life, will possibly be taken from me when they are older? If they were getting this now, when they were young, people would care. But they will still be my little ones even when they are grown. They will be all I have left. Why can’t everyone see that? Why can’t everyone in the world stop and listen and care? Why can’t some really rich billionaire who spends thousands of dollars on a single dinner just give a few million to this? Wouldn’t they do that if it was their own children at risk?

What do I have to do? I can’t let them get this. I can’t not do something. What am I going to do for dinner tonight? I don’t think we have anything in the fridge and I don’t have time to go by the store. I could ask Jim to run to the store. Oh. That’s right. He isn’t driving anymore. I wonder if I took his license too soon. No, I did the right thing. I wonder if the kids have gotten their stuff done.I wonder if Brad read and if Frances cleaned her room.  I should call the house. Oh, I can’t. I have to call back Mr. Jones for work. I am tired. I wish I could just go home and take a nap. I wish we had a screened in porch so I could sit and take a nap in it. Uggh. I still need to sort a load of laundry and pay those bills that came in last week. Wait. Wasn’t it Jen’s birthday? Did I call her? Yes. I think I did. No. I might not have. Did I call back Melissa? Didn’t she call me and leave a message? I think that was a couple of days ago. Oh my God. My memory is getting as bad as Jim’s. What will I do if the kids get this one day and I do too? Who will take care of them if I am sick? What if I get in a wreck? Who will take them if I die now? What if Mom and Dad die right after I die? I need to make another appointment with the attorney and get that settled. Who should I make guardians? What would happen to Jim? Would the kids know I loved them more than anything? I should write them both letters. I don’t think Jim ever wrote those letters to the kids like I asked him to. What if I get cancer?  Who would take care of me and the kids at the same time? Mom and Dad would, but that would be a lot on them. What would I do with Jim? I can’t get sick. What if I do die though?

Who would pick up the fight if I am not here to do this? I wonder if any of my friends would? I wonder if the kids would? I need to do something. Maybe I should go jogging when I get home. I can’t. I have to start dinner and I need to work on those pictures from Alaska and I need to straighten up my desk and I have the book I am trying to read and I would really like to sit on the couch and watch a movie. Yes. A movie and a cold beer would be nice.I haven’t sat and watched TV in a long time. I think it has been a few weeks. What was the last thing I watched? I can’t remember. Maybe I will do that. I deserve it. Wait.  We don’t have any beer. I need to go to the store anyway. I wonder what I can fix for dinner tonight?

Frances and Brad. Vancouver. July 2014.

Frances and Brad. Vancouver. July 2014.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (17)

Ups and Downs

Supporting Brad at the state competition. April 2014.

Supporting Brad at the state competition. April 2014.

It is time! Brad’s Odyssey of the Mind team is headed to Ames, Iowa to compete in the World competition. I am so, so lucky I was able to take off  work and go with him.. I always seem to spend more time with Frances for some reason or another and it makes me so happy to get to share this grand experience with him.

Of course a huge dilemma was leaving Frances and Jim for 6 days with no transportation. As luck would have it, my awesome nephew just finished his first year of college and was not only available, but willing to come stay with them and help. Again, our lives are blessed by those we have in it.

Another huge stressor is getting everything ready. I am in the process of fixing some sauce to have ready in the refrigerator. I will put dinner in the crock pot before we head to the airport. I have cleaned, shopped, asked friends to be on call and organized the schedule for the rest of the week. Naturally Frances has a softball tournament out of town while we are away and thankfully (again) some parents have stepped up to offer help however need be.

Tonight while I was trying to pack, I noticed some clothes that were in the dirty laundry earlier in the day now hung up in our room. I did 3 loads today so I was familiar with what still needed to be washed. There was a not washed linen skirt, all jacked up on a hangar dangling in the closet door space. So, I start investigating, which I have come to realize, albeit too late most of the time, that I should just stop doing. Yes, dirty clothes were put away with the clean clothes and wet towels were thrown on top of some of the clothes left in a basket and then another basket was put on top of a basket of clothes as well. Everything dealing with our laundry was completely awry.

Then to top off the day, I was putting groceries away and one of the shelves on the door of our fridge literally broke when I put something in it. I quickly emptied the contents while putting the rest of the food away and fixed dinner. It wasn’t until after dinner I opened the door and saw the empty shelf back in the fridge, waiting for someone else to put a bottle in it to only fall on the floor. And yes, Jim was standing right there when it broke in the first place. He had no recollection.

It has been that kind of day. My bicycle tires were flat and I couldn’t get the air pump to work to put air in them. We had windows open with the air conditioning on. A block of cheese was put away with the wrapper ripped apart so that the cheese was now a much darker orange and hard as nails. The dog was left alone and grabbed a brand new bag of bagels off the counter and ripped them open. It was just one thing after another. The relatively new can opener no longer works. The flowers that were supposed to be watered were drooping bone dry. I was ready to scream!

But in the quiet of the night, I sit alone, and feel calm. I feel like it is all going to be ok. I feel cared for and supported. I realize all of the little things that go wrong make room for the big things to go right. All it took was a quick phone call from a friend wanting to touch base before we left tomorrow.

I am telling you, a quick note, phone call, lunch, drive by “hello”, whatever, makes a huge difference to someone. You may think they are living a perfect life. You may know the struggles they endure. Either way, we ALL need to know others care. We all need to feel like our worst days are better than someone else’s.

Some of you might be wondering why my fabulous parents, who always come to help, aren’t coming to help this time. Well, good question. They are driving to Iowa and coming to cheer Brad and his team on. How lucky am I? I have a nephew willing to help. Parents willing to help. Friends helping. What do I have to complain about? Nothing. Now if I can just get a new fridge shelf, working can opener, fix my tires and figure out a new system for the laundry, I would be the happiest girl in the world.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized and have Comments (5)

Mother’s Day Blessings

 

Frances and Brad with the quilt she made him. Christmas 2012.

Frances and Brad with the quilt she made him.               Christmas 2012.

Lately it must seem like I am really down and a little depressed. I think I feel those things at times and I think it is completely understandable and completely normal under the circumstances I am living through during this stage in my life.

But I also want to share the moments that I am overtaken with happiness, gratitude and amazement.

There are times when good people do simply wonderful things for others that are never spoken of and never repayable.

We have an amazing friend. She used to teach Frances in elementary school. We became friends outside of the class. She is kind and sweet and I have often wished I were more like her (patient and beautiful; just not fair.) Both kids adore her. THREE weeks ago she had her second baby. THREE WEEKS AGO. Today, she brought both of her children to pick up my children so they could go pick me out something for Mother’s Day. So, let’s be clear here. This completely insane and awesome lady had FOUR children with her going shopping for someone else. How easy would it have been to think about it and say, “that would be nice to do but I just had a baby and it would just be too much.”? No one would have blamed her or would have known any different. I have tears in my eyes as I write this. Who does this?  Who takes makes the time, makes the effort, follows through with the plan and does it all with a smile and a hug and a “no worries. I wanted to and I really enjoyed it.” ????

This world we live in is filled with hate and violence and anger and very bad things that are happening all the time.

But this world we live in is equally filled with compassion and support and love and unselfishness.

It is so easy to lose sight of all the good that comes our way. I write about our saga, our journey, and it sometimes seems like there is not only no light at the end of the tunnel, but no end to the tunnel.

Somehow our family is  blessed in the midst of such sorrow. Someone miraculously does a small deed that is HUGE to us. HUGE. I hope those of you reading my words are able to think of someone you know who may need a small, tiny favor  and you are able to help them. Whatever your actions are, be assured that you will make an enormous difference to them. The reward you will reap and the difference your actions make are guaranteed to be well worth the energy you will expend.

Mother’s Day is just two days away. I have already had the best Mother’s Day just by realizing how much others care. As a Mom, I am fortunate beyond measure. My children are what keep me going. My children though are loved by many. They have grandparents, neighbors, teachers, coaches, friends and family that love them and look out for them. I know that if I can’t be there for them, someone will step up and will be. I am comforted and eased by this knowledge. I am relieved to know it not only takes a village but we have a village.

Thank you friends. Thank you teachers. Thank you coaches. Thank you neighbors. Thank you for being surrogate parents for us to Frances and Brad. Thank you for easing my load and for giving me that peace of mind. Thank you for caring about our family. Thank you for being much better than what the news would have us believe.

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)