Tentacles

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Jim has tentacles in me. Every part of my being.They are wrapped around my mind, woven throughout my body and engrained in my soul. His warm, soft tentacles encircled my heart and as they balance it precariously, they seem to harden and tighten their grip. His tentacles reach into our finances and my role as a parent. There is a tentacle in most of my friendships and in my career. There is nothing in my life that isn’t touched by him and that hasn’t been for the past 19 years. And now Alzheimer’s Disease touches each one of those things as well.

Sometimes I feel his tentacles being snatched out of me and it sears as if I have been touched by a radiating iron cane. The scars have started to form as they leave their marks. I fight it. I fight losing his love, his touch, and his help with every aspect of my life. A life now being ripped apart at the seams.

There are times I think, I can do this.

And then there are the dark moments that come out of nowhere and cause me to sink into an abyss.

I will get a bill from his hospital stay and fight with Medicare for hours on the phone to no avail as he sits quietly watching from the couch. Not long after, the kids will embark into a loud discussion and Jim again sits silent. By now I am on edge and ready to snap and all it takes is something simple…a misplaced item, something left out that should have been put away, homework not done before the TV gets turned on or rooms not picked up or dinner needing to be fixed or the trash smelling up the kitchen and I am the only one who seems to notice….. Something simple, that in the whole scheme of things doesn’t matter, will cause an enormous amount of pressure and unhappiness. When in reality it is the tentacles; the long, flexible organs that are burning me from the inside out. They are reminding me of the loss of my best friend, my co-parent, my financial advisor, my handyman, my confidante, my lover, my future and my past.

Watching Jim sit in the passenger seat during the brutally cold winter as I got out to pump each tank of gas. Seeing him in bed, unable to put the covers over his feet. Listening to him interject into a conversation with an almost unintelligible sentence that doesn’t relate to the topic at hand. Watching him fumble with his belt and unable to understand as I explain he is missing a belt loop or his pants are unbuttoned. Eyeing the unkept hedge (remember the hedge?), the edging needing to be done, the overall unkept yard Jim would never have allowed to happen.

I feel as if I am becoming androgynous. My role as mother is merging with the role of father. Taking out the trash. Mowing the yard. All of the things typically done in a household by the male. I realize this is awfully sexist, but in every marriage, each person has particular things they do. In our family, Jim did the “guy stuff”. Fixing things, taking care of the yard (except for planting the flowers), doing the dishes after I cooked, helping with homework or playing with the kids while I did my “girl stuff”.  We had our flow of expected responsibilities. It is hard to remember he used to pay all the bills or was responsible for keeping track of oil changes and inspections due. It is all me now. Plus I am accountable for his well being and care. Does he see the stress I am under? Does he see the paint peeling on the house? Does it bother him when I have to help him pick out his clothes? When he hears certain songs does it trigger a memory of special moments in our past? Does he think about me that way anymore?

This weekend is our 18th wedding anniversary. I took Jim to celebrate at a nice Italian restaurant. While driving, I made a concerted effort to hold his hand. I had to explain to him where to put his elbow and make him understand it was ok. But it wasn’t his hand I held. It was a stranger’s. It didn’t feel right in my palm. There were no callouses and the muscle tone was different and the grasp was uncomfortable. I tried to start a conversation several times to no avail. I tried to bring up our years together, only for him to get teary eyed.

I eventually just gave up and we ate in silence.

It is because we knew each other so well Jim was able to get diagnosed so early. I knew something was off and wrong extremely early in this nightmare, even as those close to us doubted me and pointed fingers my way and insisted maybe I was part of the problem. (I am still psychologically battling that one) I think he knew too because he never argued with me. I think he has tried in his own way to make this all as easy as possible on the kids and me. But there is no way to buffer the pain from his tentacles leaving me as he observes in silence, staring at something far off and unseen by those around him.  The touches are gone. The smile is gone. The lovely handwriting. Gone. Conversations. Gone. Help with the kids. No more. The pride in the yard and in his appearance. No where to be found. The connection and the emotional support. Vaporized.

The tentacles will continue to burn and leave me damaged. Ultimately I must find the place deep within me to regrow and become the person I am meant to be. It is no easy task while he is so clearly still here and needing me. I can’t move on, but I can’t afford to stay locked in the recurring torture zone. I am searching for that balance and the tools that will allow me to do both; move forward and remain steadfastly by his side.

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)

Strong Girl

 

Cliff Jumping in Bermuda, 1993.

Cliff Jumping in Bermuda, 1993.

I was held up at gunpoint. I was on my way from my car to my apartment, walking with the man I was dating and suddenly there were two guys with ski masks over their faces pointing guns at us asking for our stuff. I remained calmed. I looked at the gun, less than an inch from my eyes, and thought to myself, “it looks fake”. I knew well enough not to ask the person holding the gun if it was. I knew there were people working out in the fitness room less than 20 yards away. As my date was fumbling with his wallet, I was asking them if I could just give them my money so I wouldn’t have to go through the hassle of getting a new license and replace everything in my purse. No such luck. As I watched them coward away, I memorized what they were wearing. I told my then boyfriend to go in and call the police and headed back to my car to try to find them (I know, I know, I have been told numerous times what an idiot I was). As a single female, I had followed all the precautions: apartment on the second floor, overlooking the pool, next to the office, etc. It didn’t stop an event that changed my life and could have ultimately taken it. I learned  you can try to follow guidelines and do what you are supposed to do but it doesn’t alway mean things will turn out the way you plan or the way you are promised. I was calm, cool and collected until after the police left. Then I couldn’t leave my apartment after nightfall for months. I would stand in my window and cry. I was haunted by the sheer brevity of the fact a slip of the finger could have ended it all. I was not the strong woman I had been for 26 years. I was living in my own prison. I learned that night the guy I was going out with wasn’t for me and ended things fairly soon after. Three months later, I met Jim. And my life was again changed. But changed so that I regained my strength and my ability to be strong. I eventually was even able to watch shooting and guns on TV and movies. All with the patience and understanding and support of a savior.

When I was 24 I packed my car and drove from North Carolina to Las Vegas by myself (before cell phones!), not knowing a single soul. I moved there for a job and stayed long enough to meet Jim. Again, following the rules….called my parents each night, let them know where I should be the next day, didn’t do anything crazy while driving across this beautiful land of ours. At the time, it seemed a normal course of action for me. I would not have respected myself if I hand’t gone. The person I was then must still be inside of me…right?

Aren’t we always taught to follow the rules and everything will be ok? It’s not. Jim didn’t do drugs. He was a good person. He worked very hard and was good at his job. He was quite a catch. Jim was safe. He was a good provider, he was a good man who would make a good husband and a good Dad. I took the safe road. He helped others and gave more than he received. Why is this happening to him? He was a much better person than I. He was a better parent. He was an all around better contributor to society. How is it he is the one being taken early? The unfairness is blatant. And now I am fumbling daily to find my footing and keep some sense of perspective that will allow me to help him navigate his new shortcomings and help our children remain intact and keep our home and figure out dinner and keep up with laundry and make sure the schedule is updated and homework is checked and everyone has taken a shower and eaten and is OK. But am I OK? I don’t know. I just don’t know.

My point of telling you these stories is to remind myself I am strong and independent and capable to be on my own. I sometimes forget who I was before I became a Mom and then a caregiver to Jim. What do I enjoy? What am I capable of? Who am I now? Who will I be when all of this is over?

I am lost. Really. I know when people see me they think I am doing so great considering our circumstances, but I am not. Not by my standards. And that is the problem. My standards for myself are pretty high. Always have been. But I can’t do it. I can’t be the person I was. I can’t do it all. I can’t keep my mind clear and focused and be the best I can. I am the best I can right now, but it isn’t my personal best and it isn’t acceptable. And because I know this, it bothers me.

There are days that I have so much I need to do, so much running through my mind, that I just shut down. I don’t cry and I don’t feel sorry for myself, I just shut down. I don’t do ANYTHING. And then I am upset with myself for not doing ANYTHING, and it becomes cyclical. Even worse is the fact I am completely aware of my new shortcomings.

I am strong. I mean, I am a strong, independent, capable woman. Or, I should say I was. When Jim and I met and married, I eventually made more than he did. It was our decision for me to stay home with Frances and try different gigs out of the house so I could be a Mom first. We had enough to live on with just his salary and we were both fine with that.  It was never an easy adjustment for me and Jim was really always the better parent, even though I was the one home all day with the kids. He was supportive and understanding and not once complained. When I would meet him at the door with a kid and tell him he was five minutes late and he was on duty, he loved it. He loved being a dad.

Even now, as he declines into his own abyss, all he continues to tell me as he cries, is that he wants to watch his children grow up. As he can’t recall their names, he knows he wants to be there to be part of their world and witness their growth and maturity.

I can’t take it. It is unbelievable painful to stand helplessly by as he declines and becomes a complete stranger to all of us who love him.

Just as difficult is to figure out where I fit into all of this…. What is the right way to navigate all that is thrown at me daily while staying his wife, staying a mom, staying a friend, staying ME?

I realize that I am morphing into a whole new entity. I don’t care about going out anymore (HUGE change for me). I don’t care about the latest movie or TV show. I don’t care about keeping the house clean….yikes. So embarrassing. My parents came for a visit recently and I didn’t clean one thing. NOT ONE THING!! Not a bathroom. No vacuuming. No dusting. Nothing. I have had them visiting me since that infamous drive across country and there has NEVER been a single time I didn’t clean and get ready for their impending visit. Never. Now, I can’t seem to find the wherewithal to do much more than change their sheets, which I didn’t do until after they arrived. Embarrassing and telling.

No, I am not the old Karen. But I know I am not the Karen that eventually will be. I am in a holding pattern. Not sure I am crazy about the Karen I am, but I have to accept there are major changes and events going on and I have to give myself some slack. Not an easy task. I am trying. I am working constantly on finding me while holding onto the task at hand.

I am grateful for the strength I possess. I am so very, very grateful to friends who understand and accept my changes. I am indebted to my parents for continuing to love me unconditionally. How are people who aren’t born with an inner ability to find that power and resilience able to handle this horrible journey? I don’t know. I am barely surviving and can’t imagine being able to without my natural fortitude.

Stay strong. Stay you when you can and when you can’t, forgive  yourself and know you will be you again someday. Maybe a different you, but a stronger and more resilient you. Repeat.

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)

Leap Of Faith

201304_FreefallFly_PinSquare_smallIt is getting more and more difficult to share our story. Not because I don’t want to, but putting into words the decline, the heartache for our family, the frustrations that are commonplace and the dissipating conversations makes it real. Not that all of this hasn’t been real, but there were times excuses could be made or his fallacies seemed more aggravating and annoying than a sign of his disease and the difficulties that lie ahead.

I put the subtitle of this blog “Confessions of an Alzheimer’s Caregiver” for a specific reason. The main being this would all be MY point of view and MY emotions and take on this journey. Along the way I have tried to paint a picture of Jim and the kids and our friends, but it has been important to retain privacy for everyone involved except myself. When I started, Jim was very supportive, mainly because he trusted me. I take that trust and hold on to it dearly. Each time I write I try to envision what the old Jim would say, would think, would feel. I try to ensure I don’t misuse the trust he placed in me.

The line between what to publish and what not to publish seems to be less and less clear. I struggle to know the right answer. So, sometimes I remain silent. But his disease does not remain silent. It speaks to me each day, loud and clear.

Jim is declining. Not rapidly, but not slowly. His speech at times is not comprehensible. His movements are those of a much older person. He wears the same underwear, clothes, socks and pajamas until I tell him he has worn those same items for two days straight. Most of the time he goes and changes. Sometimes he comes back in the same outfit and tells me he did change. Most of the time a belt loop has been missed. Sometimes two loops. He eats bowls of cereal over and over again and says he hasn’t had any. He stopped walking the dog for a while unless someone reminded him but lately has picked it back up. He still goes and plays tennis, but needs reminders. He has stopped jogging almost altogether. He barely watches TV, but at times will watch a game with the family. He cannot put a puzzle together. Long gone are the crossword puzzles he devoured and the books he enjoyed. He has great difficulty hanging a coat or shirt. At times he struggles with his seatbelt. He still eats whatever we set in front of him. He gains absolutely no weight. He is obsessed with things and then forgets them completely. He has little understanding of time. He can still vacuum. He no longer paces around our downstairs area; he now just stands in one place for great lengths of time. Sometimes in the dark. He rinses dishes and thinks he has washed them. He puts the trash in the recycle bin and the recycling in the trash bin. He brings in the overflowing recycling container before the truck has come by. He feeds the dog food to the cats and the cat food to the dog. Sometimes I catch him with dog food in his hand, putting a few pieces on the floor at a time for the dog instead of filling the cup and putting it in the bowl. He puts things in very strange places. He can no longer read a menu and independently order a meal. He usually remembers to wash his hands. He will drink 5 glasses of tea before his food comes. He will wash his hair with lotion or conditioner. He will go to bed without telling anyone goodnight. He will laugh and throw out a joke at anytime. He still looks good when he has shaven and gotten some rest. He still craves being with his family.

So, this is where we are. He is in full- blown Younger Onset Alzheimer’s Disease form. Not Mild Cognitive Impairment.

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Over the past several months, there has been a huge transition in our family. Jim has continued to battle gallantly, but still becoming more and more dependent. As he has needed me (or someone) more and more, I have become suffocated and started having my own problems. My work was giving me more and more responsibility at the same time I was needed more and more at home. Both kids were needing me. Jim was needing me. My work was needing me. Something had to give or else I was going to end up either in the hospital or a mental ward. With much thought, I decided to step down from my job. This was a difficult decision because we need the money and I need the outside connection. I am often asked how we make it financially. I don’t have a magic answer. I save when I can and I spend when I have to. I don’t pay for his daycare yet, just respite care. I will write more about this later. After I quite, it took a while to really let go. My job was ingrained in me. But the one thing I realized was how little time I was spending with the kids, especially Brad. Our bond was suffering and what was important became more and more crystal clear: our children. I have not regretted my decision one bit. My stress level was cut in half. My ability to parent both kids has re-emerged. I can work on The Garner Foundation and volunteer at the kids’ schools. I can help Jim more and find ways to become an advocate I wasn’t able to before.

But slowly, I have been sucked back into a darkness. As Jim has declined, my will and my own strength has tumbled. I don’t have the outlet of work. I don’t have something forcing me up and out into the world. I don’t have to take a shower, do my hair and makeup or for that matter, get out of bed unless I really want to. This is not good. I have been suffering, as I suspected I would, when I decided to quite. I need outside stimulation. I cannot sit home all day with no purpose or agenda.

As fate would have it, Home Instead Senior Care asked me to help them with some upcoming Alzheimer’s programs. They asked me to write for them. They asked me to be part of their team, without the stress I was under. They agreed to pay me to do basically what I have been doing and what I am passionate about and what I will more than willingly get out of bed to do! This has been a lifesaver for me. The foundation has been a lifesaver for me. I wish I could find something to save Jim, but we all know I can’t. All I can do is keep doing the best I can, when I can. It is amazing how you really can learn to let the little things go. Especially when you don’t have a choice.

Sometimes, when you take a leap of faith, a net catches you and throws you higher than the cliff you jumped from.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (9)

Valentine’s Ashes

Thank you Patti Brown for this amazing photo. 2008.

Thank you Patti Brown for this amazing photo. 2008.

I suppose this time of year is unbearably hard for those who don’t have a Valentine. I have never been a big fan of the holiday, even when I did have a Valentine. Now it seems every commercial, every restaurant, grocery store and online pop up ad flashed a “YOU DONT HAVE A VALENTINE” in my face. Yes, I do have a Valentine. A man who has loved me when I am not worthy and who has forgiven my faults and shortcomings for many years. A man I admired and respected enough to marry and have a family with. So, I know I have a Valentine, but according to the ad executives, I don’t. Because he can’t buy me jewelry or chocolates or the perfect Hallmark card. He didn’t even remember or seemed concerned once he was given his chocolates and told “Happy Valentine’s Day”. That is the part that stings now. He was at the point where he couldn’t think far enough ahead to plan for a holiday. Now, when the holiday is here, he is oblivious to what his role would have been. Each year that passes and each holiday that has expectations attached reveal the layers that have peeled away in Jim’s mindset.

I spent Valentine’s evening dropping Frances off with a friend so she could spend the night and then go skiing the next day. I am so grateful to that family because she loves skiing and I am not going to be able to take her this year. When I dropped her off, the family invited me to join them for dinner. As I sat in their beautiful kitchen, watching them work together to fix a lovely meal, listening to the girls play ukuleles and joining in as everyone sang along…..my heart hurt. This was an evening that I would want to host in our own home, with Jim helping and our family being the warm and inviting refuge others want to visit. It wasn’t that I was jealous, amazingly, I wasn’t. It was just a bittersweetness and yet I was happy and having a great time. I love sharing time with them and love the fact Frances is able to visit and to be part of a family who can sing and cook together and go skiing. I love the kids being with other families and seeing what other relationships are like when one of them isn’t sick.

The next night, Jim, Brad and I went to visit different friends and it was the same.  Others working together to host us, fix a nice meal with lots of laughter and fun. Again, I was both happy and sad. I loved the fact we had friends to hang out with. I loved the fact that Brad was able to see the communication between other adult couples and play games with us and to witness a different side of marriage. Yet, I recognize that it is becoming more and more difficult to remember us as that type of couple: full of chit chat and hugs and laughter.

It must shine a magnifying glass on certain things in our home when the kids visit with their friends. I wonder if they notice the difference in marital relationships….. I am sure they do. They are observant kids. I wonder how all of this will eventually affect their own marriages and relationships…..I wonder so many things; all the time. My mind constantly seems to be going full throttle, but there are times it seems to be puttering out on me. I am forgetting words and at moments having a hard time saying exactly what I am trying to convey. It is so frustrating. I know it is the stress, but it also helps me understand how frustrating it can be for Jim to not be able to find the right words. And lately, he is having a harder and harder time.

I know I will get through this most romantic time of the year without a romantic partner. Yet, I can’t help but wonder how I will ever be happy again? I don’t mean with another man. I mean, AT ALL? By myself, with someone, with the kids….AT ALL? I know what it feels like to be loved, cared for and to have a partner; in the kitchen, on the slopes, with the kids, playing games, lying on the couch reading or watching a movie or just communicating without words…. in life….and I don’t have one anymore. I have always known I am an independent person and surely this must be coming in handy, but I don’t know that being a strong willed, independent person helps take the sting out of lonely nights and thoughts that can no longer be shared and dreams kept quiet and shows watched alone.   I am acutely aware of the singleness that is overcoming my life. Jim is fighting hard to stay with us, which makes my recognition of these feelings of aloneness and solitude more inappropriate. I am not going through a divorce. I am not part of a relationship where the husband is out all night and I am sitting home alone. I am not supporting a man who won’t go find a job. I am thankfully not caring for someone violent, angry or ungrateful. I have many things for which I am appreciative,  yet I am longing for a life I no longer have. I can witness it and taste a sampling, but I cannot have that happy home with an equal partner. The worst part is I had it. I had all of what I long for, and it is slipping away one plaque and tangle at a time.

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)

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 love my kids

Frances and Brad, Sept. 2006

Frances and Brad, Sept. 2006

I am like 99.9% of the parents in this world….I LOVE my kids. I love watching them play sports and participate in school activities and I love hanging out with them (most of the time). I love the chats we have and I love the laughs at the dinner table. I love that they make me a better person. I love teaching them about the world and I love it even more when they teach me a thing or two. They are actually pretty good behavioral wise and both of them show me love and gratitude on a daily basis. I recognize how rare this can be with a 14 year old and a 10 year old and I am very, very grateful. I suck it up and savor every moment. Sometimes to the point of being a little too emotional and a little too sappy. I realize it won’t always be this way and appreciate what I have right now. They are by no means perfect, but I am proud and I recognize how seriously lucky I am to have them in my life.

There are moments I get really hard on them for not wanting to be with Jim more or for getting frustrated with him; just like I do. I don’t praise them enough for when they do show patience and when they are participating in his care. As with most of life’s moments, we see them clearer when they are firmly behind us. It is important to me to learn from these lessons and to keep trying to become a better mom, a better wife, a better person. The end result will save me from my self -destructive ways and from wallowing into a mass of self pity. It is difficult to feel sorry for yourself if you are constantly critical within your own decisions and behaviors. Some say I am too hard on myself, but when I consider the alternative of accepting my situation and letting myself fall to pieces over and over or become less of a person than I should or can be, I am not thrilled with what that person looks like. I would fall into a deeper hole because I would be so disgusted by looking into the mirror and not liking what I saw. I suppose without Jim to keep me in check, I am forced to do it myself and this is the way I can. I sometimes rely on friends and family, but they try to be too delicate with me for fear of making things worse or just because they want to protect me more than hurt me. Yes, it would hurt to hear something awful about myself, but in the end game, it would be better for me, Jim and the kids.

I often forget how different their childhood is from mine. I remember growing up being terrified for a while that my parents would die; either from cancer, a car wreck or something that would take them away from me. I can vividly remember asking them when they were going to die and begging them to never leave me. I still feel that way. I think most kids go through this phase at some point. Fortunately, those fears were never realized and I am blessed to still have my parents in my life, helping me as much now as they did when I was living in their home.

On the contrary: Frances and Brad have basically always known that their Dad will not be around forever. They don’t complain about it. Actually, they never mention it. I suppose it is just their “normal”. When we started realizing something was terribly wrong with Jim, Brad was just 5. He doesn’t remember anything different. He doesn’t have a carefree life without the burden of Alzheimer’s Disease. Ever. It is as engrained in him as eating fruits and vegetables or washing your hands before a meal. That is all he has known. Although I live in this family with them, their perspectives and thoughts are so different from mine. Their expectations differ and their reality is now including a disease that not only took their grandmother and uncle from them, but is taking their father too. And they are both fully aware, it could possibly take them or their sibling.They are extremely close for children this age and I am sometimes just awestruck at this. Frances has been gone during the week recently and Brad asked the first week she was gone if we could pick her up early, telling me “it just isn’t as much fun when she isn’t around.” And when I picked her up and brought her home, the first thing she wanted to do was see Brad.  I think part of the reason they are so in tune to each other is their common woe of Alzheimer’s Disease and losing their father in this manner.   What must that be like? How would I feel? I know how I feel with it being my husband and possibly one day my child, but what is it really like to grow up with this horrible mess surrounding you constantly? Is it like living in a war torn country? You just get used to it and learn to adapt?

Frances remembers Jim from before he was showing signs, but her personality allows her to be very practical and compartmentalize on a regular basis. I worry one day, when she is older, she will look back and have regrets. I worry I am not doing enough for either of them now to make it easier and more bearable later. I strive to give them as normal a childhood as possible: no favors from teachers or coaches, no special treatment from schools or organizations they are applying to. There are two rules that I will not budge on: not taking advantage of Jim and not manipulating our situation to their advantage. I feel strongly that it will only hurt them in the long run if they rely on his impending death to get away with things most kids their age try or if they are treated with kid gloves.

There are moments I think way too much about all of this, and I want/need someone to talk to….my husband would be my first logical choice, but as you know, it isn’t a choice that is available. So I sit, by myself, trying to single handily determine the best way to parent two children who are not only losing their father a fraction at a time, but who might eventually sit across from a doctor listening to the same horrible diagnosis.

I am sometimes so completely stunned, I am not able to function at my normal capacity. It just can’t happen. I can’t think straight and I can’t decide what to do about anything. I can’t figure out what to fix for dinner or where some papers should go or how to plan our lives financially. The stress and the burden of trying to stay “normal” through a very, very long illness and subsequential grieving process can make a person not only change their personality, it changes priorities, desires, rationality and common sense.

My first and most important goal is to raise two, healthy, children who are not completely scarred by a childhood overshadowed by death. If I can fulfill this objective, I will have been a good mom. I won’t know until years from now. All I can do in the meantime is the best I can, when I can. And then I need to accept I won’t always be my best. I will still be me, but I will just be a lesser version for a time.

Jim, Frances and Brad, April 2013.

Jim, Frances and Brad, April 2013.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (4)

Trapped Alive

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Sometimes when I write this blog, I have to censor myself. I don’t do it to protect myself, but to protect my kids, my family, or Jim. Sometimes it is because the reality of this disease is so harsh, so burdensome, so outlandishly crazy with the fact that more isn’t being done to help that I have to abstain from writing what I really want. There is a novel being written in my mind that would completely shock some and others would be like, “Yeah, I could have written that years ago.”

I am going to attempt to walk a fine line and discuss where I am and where Jim is. Actually a small facet of those.

I feel trapped. Trapped like a caged animal desperate for release. Trapped in a world I have little control in. Slammed against brick walls and thrown into a dark abyss of pain, selfishness and emotional upheavals that are unbridled and uncontrollable. I am stuck with Jim. I am stuck taking care of him and worse; I am stuck watching him become someone I don’t know. I am MARRIED to a person that can no longer use a hotel key card or who doesn’t understand that you can’t put the Costco cart inside of the World Market store. I bare witness to the mumblings and the utter disregard for clean clothes. I know it is politically incorrect to say these things, but I know I am not alone. I know that there are others who have these same thoughts. It is ok. It has taken me a long time to accept this. It’s ok because I don’t ACT on the thought of feeling trapped and suffocated. I am staying. I am here, doing the best I can. This is me, being me. Even when the kids were younger, I would sometimes be waiting for Jim at the door, ready to hand over the reins so I could have an hour of “me time.” And I love being a Mom and love being with them. But I have always needed my space.

When the kids were just babies I would read article after article on how to be the perfect Mom. You have seen these in parenting magazines….How to Raise a Giving Child or What Every Mom Should Do To Prevent Tantrums. I could never live up to the examples that were set in print. Now that I am a caregiver to my husband, I sometimes fall into that same old habit of trying to be the perfect care provider all over again. But this time, I am a little more mature (just a little) and I am being forced into a corner that will either allow me to excel or set my life on an uncontrollable  spiral. But this time, there are clear repercussions if I fail. My children will suffer at my shortcomings and so will Jim. If I don’t do this “right” I could lose the most precious and wonderful things in my life: my children.  I am choosing to excel. In order to do this, I must find a way to accept my faults. To accept my faults, I must be honest. And that is where this revelation comes in.

One of the things that Jim and I did well was accept each other. Sure we each had our little things we bitched and complained about, but for the most part, he let me be me and I did the same for him. Part of my appeal to Jim was the fact I was so independent. I loved being with him, but I liked my space. And so did he. It worked well. We did stuff together and we did stuff apart. He played sports, I hung with friends. We worked around the house together and watched movies together and then we would travel separately for work and it all came together nicely. Now, not so much. He is home. All. The. Time. I am told when I am not with him, he constantly asks where I am, when I will be back, looks out the windows and front door and paces. I haven’t seen it first hand, but I know this is typical behavior for an Alzheimer’s patient. But it isn’t typical for me. Or for Jim. I don’t do well with feeling suffocated. I need my time. To do whatever. It doesn’t even have to be anything major. Just going to the store by myself or walking a trail by myself or catching up with a friend makes a huge impact on my mindset. Over the holidays, I was basically attached to Jim at the hip and without me realizing it, I was subconsciously revolting. It is who I am. How can I change this? It isn’t cool to say you want some space but I NEED my space. I need my time to do whatever I want.

I have so little time left with Jim, shouldn’t I want to be with him 24/7? Shouldn’t I want to take him in; his smile, his laugh, his eyes, his hands, his everything? Shouldn’t I want to be there for every joke he still cracks and to guide him through his day?

No. I can’t. It isn’t part of my personality and even more to the point: I DON’T WANT TO. It is too hard. I hate seeing him this way and he still has a long way to go. And this my friends is the catch 22. I want to be with Jim, but I don’t want to be with Jim. There is a constant ebb and flow of emotions….. the reality is simple: I want to be with the real Jim and right now I am settling for an impostor. He has such a great attitude and still tries so hard and gives so much of himself….but he isn’t himself and sometimes it is too much for me to see him in this state, however amazingly good it is for someone at this stage of the game. It is such a far cry from the sturdy, autonomous, handsome man I have lived with since 1996. It cuts me to the core and sometimes I am just unable to simply be ok with the  man I am currently living with.

So, here I am. Being honest. I am not going anywhere. I am staying put, but in my mind, I am sailing the islands of the Caribbean or sitting on a dock overlooking a mountainous lake while reading a book or taking in the Northern Lights (on my bucket list) or snuggling with the man who always made me feel like a million bucks until he couldn’t anymore. And now it is up to me to make sense of it all just to stay sane enough to carry on.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (19)

Please fix that chick you see in the mirror….

This is such an amazingly good photo of Jim now. I love it. Dec. 2014.

This is such an amazingly good photo of Jim now. I love it. Dec. 2014.

I am searching. For me. For a way to survive. For a way to thrive. For a way to find myself in the midst of sorrow and angst. I am lost in my own mind of worry and contempt. Contempt for myself. I realized over the holiday break I don’t really like myself but I haven’t quite put my finger on why. You must understand I am a realist and I am just as hard on myself as I am on anyone else. Is it because I can’t save Jim? Is it because I have thoughts of wanting it to all be over, which in reality would mean him dying sooner rather than later? Even recognizing how difficult it will be to be a single parent, I sometimes catch myself wanting this to end abruptly so the children (and myself and everyone else really) won’t have to watch Jim lose himself and all he is/was.  Is it because I lose my patience with my children when I am tired or stressed or disgusted by the fact I still need to clean off my desk, clean the bathrooms, do another load of laundry and clean my room and fix dinner? Do I find contempt for the person in the mirror because she isn’t a superwoman after all?

It’s true. I don’t like myself. I don’t like my looks and most of the time I don’t like me. I don’t like the person who needs help all the time. I am blessed by the fact we have many friends who have jumped at the chance to help us. I recognize what a wonderful support system we have and also recognize I wouldn’t survive without them. But I would be much happier being the one to help than the one constantly sucking up whatever is offered our way.

I am emotionally a mess. At any given time I could cry or fill your ears with a myriad of complaints and turn it into a tirade and then end it by feeling guilty and regretting the whole mess. I am constantly trying to get a handle on my mental status, my physical well being and organize my life, my house, my thoughts and my world. But, it is completely impossible to organize anything with a spouse with Alzheimer’s Disease. Things are misplaced. Things are broken. Things are left incomplete. I feel like a mess. I want order and all I can muster is major chaos.

Sometimes, I sit and I look at Jim. Really look at him. I no longer see the man who swept me off my feet….I see the hunched shoulders and the thin body and the timid responses. I see a shell of the man that at one time I thought could do anything and would help me conquer the world. I feel so sorry for him. I don’t want to feel sorry for my husband because I know he wouldn’t want it, but I do. I can’t help it. The contrast from a few years ago to now and I know the contrast that will take place over the next year or so….it breaks my heart. For Jim. For our children. For our friends. Jim deserves so much better. Not just because no one deserves to suffer at the hands of Alzheimer’s Disease, but because he has always been such a stand up, kind, giving and all around good guy.

There are more stories lining up than I can share….but I will share the one that stands out the most to show how I am failing my family…..

I recently had to drive just over an hour away to take Frances for a new adventure in her life. I had a choice; I could drop her off and immediately return home, or I could linger and have dinner with a friend. I chose the latter.

So, Brad was left home with Jim. Keep in mind, I promised myself a long time ago that I would never have the kids “babysit” Jim. So, I get Frances settled and I go to a leisurely, wonderful dinner with my friend. While we are eating, I have my phone on vibrate so I don’t hear or see the two messages from Brad. When I get to my vehicle I call home.

“Mom, where are you?”

“I’m leaving now. How was your day? “

“Good. You didn’t tell me you would be gone for lunch AND dinner. I didn’t know I would have to fix me and Dad dinner too. I thought it would just be lunch. “ Ouch. 

“I’m sorry honey. I just got done with dinner and will be home in about an hour. Did you get enough to eat?”

“Yes. But why aren’t you home yet?”

“I stayed to have dinner with a friend. I told you I was.”

“Ok. I will see you soon. I love you Mom.”

“I love you too.”

Less than five minutes later, I get a frantic call.

“Mom!! Dad is crying. He has his finger stuck in the dog collar.”

“What? Can you undo the clasp? How did it get stuck?”

“I don’t know. It’s not the clasp. We can’t undo it. Mom, he is in pain.”

“Brad, go next door and get Rex (not his real name).”

“Mom, I can’t. I can’t leave him.”

“Yes, you can, go now and get him and he will be able to help.”

“Ok.”

Ten minutes later, I call and find out the neighbor has indeed come over and helped. Once I am home, everything seems fine. Neither Jim nor Brad can demonstrate to me how he had his finger stuck. Jim doesn’t even seem to remember it happened at all.

The worst part comes as I am tucking Brad into bed:

“Mom, I think you need to get someone to stay with Dad. You know. All the time.”

“I know. I have been thinking about it.”

“Well, someone besides me needs to be here in case an emergency happens. Dad can’t do anything and there needs to be someone here to help him when he can’t.”

Yep. Mom of the year right here. My ten year old has more sense than I do. Hiring a caregiver at home seems so easy. But it isn’t. It isn’t just about money (although that is huge). It is finding someone. It is making that call or several calls. It is having someone in your home, in your life, ALL THE TIME;  to see your many facets and to see the clutter and the mess and the ugly side of things. It is an intimate look into your family and your life and it is a huge step to take. I know I am about to take the plunge and I am not happy about it.

Next story:  Clingy and trapped.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (18)

Happy What?

Ice Skating, Dec. 2014.

Ice Skating, Dec. 2014.

There have been so many wonderful things that have happened in my life over the past month. But there have been so many horrible, ugly things too. I feel as if my life is one big oxymoron.

I am overwhelmed. Not just by holiday stresses. Those are actually a few things that pull me away from the normal stresses. Yes, stringing lights on the tree by myself versus the way it has been for the past 18 years sucked. Yes, shopping for everyone (including myself) by myself, sucked. Yes, there have been moments of extreme bitter nostalgia; when you remember how it was and realize it will never be that way again and you just have to keep moving on, but it doesn’t mean you like it and it doesn’t mean you are happy about it. You just do what you have to do.

There are times that I think the kids being so young while dealing with Jim makes it so much harder. And I think how much easier it would be if they were grown and on their own. But, there are more times that I realize them being part of our home right now, in this moment, saves me over and over again. I probably wouldn’t care about a tree or decorating (honestly, I only did about a third of our normal this year) and I probably wouldn’t sing along to songs on the radio quite as much and I am pretty sure I wouldn’t give two cents about watching any Christmas movies or seeing Christmas lights or even worrying about family traditions. Traditions I realize at moments of clarity are dwindling but I steadfastly cling to in the hopes of stabilizing their childhood. Traditions that have become more of a burden than moments of fun and familiarity. I struggled to get the tree from the same tree farm. I struggled to have us all decorate said tree. I struggled to do so many things that have become part of what our family does every year. But this year, I have secretly thought to myself, “Will I do this when Jim is gone? Will it matter and will we all want to do this? What is the point?” It is hard not to picture our life without him when he is still here, yet he really isn’t here, so it makes it somewhat easy to picture a life without him. Again, my life is one big oxymoron. How can he ice skate so beautifully, yet not be able to figure out his seat belt buckle? How can he walk the dog numerous times a day, yet not realize he is still in his pajamas? How can he eat like a horse over and over and never seem full or gain weight? How can he be slipping away from us so steadily and yet so slowly? It is all so confusing. How does anyone manage to live through this for years on end? How can I? How can the kids?

Frances asked for very few things this year for Christmas. Less than five things.(Actually both kids had extremely short lists compared to myself at their age) One of the main things she wanted was to see The Piano Guys in concert. When she first mentioned this, I had no idea who they were. I had never heard of them. So I went online and saw they are  a pianist and a cellist. They play beautifully and their closest concert to us was 4 hours away (with a good day of traffic. For us it would be 5 -6 hours). I contemplated for a very short time before deciding if my thirteen year old daughter wants to see musicians like this as her main gift, well, I am going to make it happen. So, I got tickets for her and I. She would have to miss a day of school, so I didn’t want to add Brad to the mix. About a week out, I realized,” Oh no! I need to have someone watch Jim and Brad!.” That’s right. I hadn’t thought everything through. When I bought the tickets, Jim would have been able to stay the night by himself with Brad just fine. But as time has moved forward, so has his Alzheimer’s. I cannot possibly put into words the sheer heartbreak I felt when I accepted the fact I needed to come up with a solution for that night away. It was no longer just a boys night alone. It was an ordeal and something much bigger than a simple concert. It was a new stage of our game. It was another slap in the face.

So, a friend stepped up to take the two boys. Another friend eagerly watched the dog. It was a lot to plan and organize. In the end, it was worth it. I think Frances and I needed this time away together. It was special in so many ways and I am grateful for being able to do so. We were finally to our hotel when I get a call from Brad. Jim didn’t want to go to our friends’ home (we have been there dozens of times) and he was getting irritated. The friend getting the dog called and reiterated what Brad had told me. The stress that flashed through my body is immeasurable. What could I do? I was 4 hours away and unable to help. Both friends told me to not worry about it, they would handle this and to enjoy the show. But how could I? What if they regretted agreeing to help us? What if this turned into a huge pain for them? What if this is the night that Jim decides to get violent? When I spoke to Jim on the phone, he told me he was fine, never complained a bit about going to stay with someone else and showed no signs of being upset. So weird!! I had wanted to take Frances for a nice meal, but we were running late due to traffic and we ended up getting something quick and heading to the show. We got there after they had started. I could feel myself screwing up the one thing I was trying to do right. I was in a state of panic. Running late and worrying about things back home. It seems that is the normal for me now. I do this on a daily basis as I work and try to keep tabs at home. It is the most stress and the most failure I have ever felt in my life.

The concert was great. I highly recommend them. As we sat and listened to their show, they played a song, Emmanuel, and I listened with such sorrow. It was beautiful and haunting and reminded me of Jim and our love for each other and the fact that I was taking this trip without him because it would have just been too much. As I listened to the sweet sounds, I thought of our plans for the future and past Christmases and how I wondered if he would be with us next Christmas. I looked around at the couples and the families and I hated the fact that our family will never be completely whole again. Yes, Jim is still with us, but in truth, he isn’t. Not the real Jim. Not the Jim that would laugh and participate and want to be part of decisions about what we were doing and what everyone was getting and even acknowledge there is a holiday among us.  I am lonely. I am sad. And I have had a really bad hand dealt to me and to our family. But, I can see the love our friends surround us with. I can see how blessed I am to have my parents to help us. I feel love from perfect strangers. I am forced to re-write our story on a daily basis and I must understand that my attitude and my point of view will determine if that story has a happy ending or not.

I wish you a very Merry Christmas or Happy Hanukkah or Happy Kwanza or just a perfectly peaceful time of year. We all need some peace in our soul and I send it to you and wish it for you. It will be what saves us all.

Frances and I at The Piano Guys concert. Dec. 2014.

Frances and I at The Piano Guys concert. Dec. 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 (12)

Three, two, one….breakdown.

Our family Christmas Eve, 2009.

Our family Christmas Eve, 2009.

I knew this day was coming. I knew I would have a day that included tears and sobbing and full body blowbacks. It happens now on a semi-regular basis and it has been a few months, so I knew it was on my radar. I was just thinking it would be in the privacy of my room, alone in the house and without an audience.

I am not sure how it started. I have replayed the whole scenario in my mind numerous times and I think I have narrowed down the trigger, but because it includes one of the kids and it is personal for them, I am going to remain silent. I will take full and complete responsibility. It doesn’t really matter the cause, there were numerous triggers, there was just one that was the tipping point when the others were the building blocks.

I took Jim to get his new military i.d. After calling and making an appointment and explaining he only had a passport and no other forms of identification, I was told that was all that was needed. In my mind, I was questioning the authority on the other end of the line, but what could I do?  You see where this story is going, I am sure…..we show up late; after some of the aforementioned troubles at home, after getting lost on the base, after asking for directions numerous times,  to a woman who promptly tells me she can’t help us because he needs two forms of i.d. I promptly explain to her that I had called and yadda yadda yadda. She told me there was nothing she could do. I was teetering on that breaking point. I could feel myself exploding inside;  I was like a volcano, ready to erupt but quietly releasing smoke signals instead. I explained again to her that he has no other i.d., he has lost his wallet and that he has Alzheimer’s Disease. My voice was getting louder and more direct and this could have gotten ugly, really fast. But I sat there, biting my tongue,  (Jim of course said nothing) and she silently typed away. The next thing I know she is taking his photo and asking him to press his left index finger on the scanner. But he doesn’t know his left from his right anymore. And he doesn’t know his index finger. And I have to help him. And his signature is a stark contrast to the beautiful penmanship he once graced legal documents with. It was too much.

We barely made it to the van before I lost it. Just lost it. I wailed. I cried. I moaned. I had tears, snot and drool all over the place. Jim just sat there. Silent and confused. Normally, I reserve this kind of breakdown to a solitary party, but today it was open entertainment for him and anyone else who walked by. In the back alley of my mind I was trying to get myself to stop. I knew I needed to get a grip and put my big girl panties on. But sometimes those panties don’t fit and there is no controlling the emotional outpouring that seeps through my body. I mean, really? He ended up getting his i.d., what was the big deal? How can I learn to let go of all the past manifestations?  Let go of the shattered handmade pottery bowl a friend who moved overseas gave us. Let go of the indoor plant that was knocked on the floor, complete with broken pot, dirt everywhere and now a dead plant? Let go of the constant lost look on Jim’s face. Let go of the misplaced items and the inside out clothes and the lost conversations, the loneliness and emptiness and the bitter sadness that has become at home in my soul. How do I release the frustrations of each reminder of the Jim that is no longer? How do I appreciate the Jim that still is while longing for the Jim that was?

Eventually I started gagging and convulsing enough it snapped me out of my hysterical state. I had mascara down my face. My nose was red. I had used up half a box of tissues. When I finally grew quiet, the silence was deafening. Deafening in the way that makes you realize how terribly loud you were and how awful you sounded.  Jim was still just sitting there, next to me and saying and doing nothing. Nothing. Which makes all of this even more heartbreaking when I stop to think of how he is/was. Not a person to sit by without trying to comfort. Not a person who wouldn’t try to fix whatever was wrong. Not a person who would look utterly confused and uninterested.

Later, I got to a restroom and looked in the mirror. There I saw I had somehow broken a blood vessel between my nose and lip. There was a thin, red streak right in the middle of my philtrum, connecting my nose to my top lip. I have never seen anything like this and have no clue how I did this during my meltdown.

I suppose it could be related to all of the pressure from holiday expectations. Or it could be the fact Jim is slipping more and more which adds more pressure and more sadness and more reality to the situation. Or it could be me having a normal rough day. Whatever the cause, I have come to realize it happens. It happens, move on.  I feel better (usually) and it lets me know I do care. Sometimes it is hard to see I care because I am too busy being a Mom or worrying about money or trying to fix dinner or driving to some practice or event or working or something other than focusing on our crummy situation. These moments of heartbreak and genuine sorrow and anguish let me know I am still human. I am still full of compassion and love and I am hurting. I don’t always allow that to show, but when it does, it does. Big time.

Then you know what happened?  I worked. I had a friend call and say “hi”. I got two e-mails from friends. I watched Frances play in a band concert. I saw Brad smile and show his wonderful personality to me and others around us. I picked Jim up from respite care and they told me while everyone was listing things they are thankful for, Jim said he was thankful for me. For me. The woman he had just watched sob and turn into a ball of mush.

So, I am good. I am muddling through and working through as best I can. I don’t have a manual on how to emotionally handle this and I am doing what I can, when I can, the best I can. Everything else will have to just be.

December 2013

December 2013

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (18)