There is a Solution, I just haven’t found it yet

quote-about-figuring-things-out-and-moving-forwardI am exhausted. Mentally more than physically. The paperwork. The worry. The constant watch. The pure, unadulterated sadness. It is beyond overwhelming, it has changed my thought process, my soul and my inner-sanctum.

Watching a person die is horrible. Watching someone you love die is worse. Watching someone you love die a slow, tortuous death is beyond comprehensible. The guilt, the helplessness, the frustrations, the anger, the heartache, the wish for it all to end…. There are times I wish Jim was afflicted with something simple like cancer or heart disease. Not only would there be hope for him (and therefore us) but there would be more support and understanding from the world around us. And most importantly, HE would still be with us.

The endless paperwork, processes and lack of understanding from any system that can help us is completely unbelievable. If someone else in my situation was telling me this story, I would immediately think that there must be something they have missed, there must be a solution and obviously they haven’t tried hard enough. Well, I am here to tell you….I have tried.

Many readers have been so, so kind and reached out with suggestions and ideas and just thoughts of love. Thank you. I want to address the following to you:

Jim is retired Air Force. He is currently on Medicare because he has been on Social Security Disability for over 3 years. Once a person who has Tricare Health Insurance collects SSDI for over two years, they are automatically switched to Medicare. There is no option.

We have applied for Medicaid and have been told our case should be reviewed and a checklist should be sent out sometime during the first part of August. In the meantime, I just wait to find out what paperwork they will need. I have done some research and so far have gotten together most of what I think they will want….every bank account, every insurance account (they want to know if life insurance policies have a cash value), every investment account and our mortgage statement. It took me several days to get all of this together. Obviously the person(s) who decided this whole process have never in their life been in a predicament like we are currently facing. The application, the turning in of said application, the conversations on the phone, the gathering of information, the waiting for an answer….it is almost as if they are trying to just wear people down so they don’t finish the process so they don’t have to help them. How do others get through this??

The Veteran’s Administration. Oh boy. Where do I start? Should I tell you about the gentleman who was supposed to be helping us with our intake questionnaire but instead  WAS WATCHING COLLEGE BASKETBALL on his computer? Let’s be honest….it isn’t college basketball season which means it was a re-run which means he already knew who won anyway! Ok, I am moving on….Jim scored a 9 on his MMSE. Some of you who have travelled this road know that means he tested in the severe range. How unbelievably awful it was to sit, as the psychiatrist, who obviously has no Alzheimer’s Disease training or background, tried to ask Jim about his recent psychotic break. Then tried to carry on a conversation with him. Then asked him simple questions he could not answer, as I sat and watched, tears streaming down my face. Awful. Just awful. But at least the kind doctor said he would try to help us and would try to find a way to get Jim care. Again, his disability isn’t service related. He isn’t a Vietnam Vet or Gulf War Vet and he is not 65. We make over $26,000 a year. We are the middle class and we have nothing.

I sat at my desk the other day just dumbfounded by this whole mess. How am I expected to take care of Jim the way he deserves AND take care of two children the way they deserve? And somehow keep sane? Actually I am not sure I am at this point!  $6000 a month is the starting point for Memory Care. I sat and figured out where I went wrong…If we had saved $500 a month for each of the 18 years we have been married, we could cover 18 months of care. But, we didn’t. Please let this be a lesson for all of you. In other locales around the country, the costs are double. So start saving my friends.

Jim is still home. He is doing very well. He is happy in a childlike way. He now needs assistance with getting dressed, with shaving, showering and unfortunately parts of the bathroom routine. He takes it all in stride, not getting angry or embarrassed. Well, occasionally he snaps, “I can do it” and there have been a few moments the kids were scared because he seemed to be getting agitated and we are all on eggshells knowing what happened in Connecticut,  but overall he is easy going. I feel bad because he can’t figure out things to do without constant urging and help. He will sit and color at the table, but needs some direction. I, unfortunately, am at this point either making phone calls, trying to fill out paperwork or collect needed paperwork or fixing dinner, or starting a load of laundry or  trying to make sure I focus some attention on the kids to remind them I love them and I do want to hear about their day and their thoughts.

I have not left Jim alone since he returned and I now feel like a prisoner in my own home. He has returned to the wonderful respite program he attended before a couple of times a week but otherwise I have a shadow.  No quick runs to the store, or walks with friends or private conversations (he is always lurking within 10 feet of me) or ALONE time. None. On one hand, it is so sweet that he loves me and needs me so much he cannot possibly be out of sight of me. On the other hand, I am reminded of crazy stalker people and no one wants to feel as if they are constantly being watched and followed. It is creepy and unnerving.

I need $72,000+ a year on top of the income needed to take care of myself and the kids to now take care of Jim in a facility that will keep him safe, occupied, clean and happy. I hate that money has become such a huge issue in his care, in our story, in the eventual way he is taken care of. I believe all that should be at issue is making him feel safe and loved as he dies. Helping our children lose their father with the least amount of long term affects.  I struggle every day to figure out a solution. I am college educated, strong, smart and capable. There must be an answer and I must not be good enough to figure it out. After all, it just doesn’t make any sense to  not have a solution. Wonderful suggestions have been made: Go Fund Me pages, ads on my blog, selling the rights to our story, divorce, spending it all down and using our savings because I am young enough to build it back up again, in home care, re-doing our walk up attic for him and a caregiver, etc. How is it that so many others have dealt with this situation and yet we are still not able to call the right person, hear a few viable options and pick the one that best fits our family? Lots and lots of ideas have been floated our way and it’s just hard to know what the right answer is. I suppose I will never know what the right answer is. I will be forced to make the decision I can make and then I will keep moving forward because that is what we do. Humans keep moving forward. Through grief. Through pain. Through hard times and even through good times. We all move towards some unseen light and hope that along the way we are consistent with our happiness, our love and our contributions to others.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (16)

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 (25)

Elusive Answers

Screen Shot 2015-07-08 at 8.07.37 PM Because life is NEVER simple or easy when you are dealing with Alzheimer’s Disease I am at a crossroads with no uncomplicated, direct answer.

Jim rode last week from our home in Virginia to visit his family in Connecticut. He was excited (when he remembered he was going) and went willingly. My parents were already heading to Boston to take in some Red Sox games, so they offered to drop him off on the way and then pick him up on the way back. This gave me a week “off” and since Frances was heading to camp, it would also give me some one on one time with Brad. I envisioned getting the house clean, taking him to movies and the beach and being able to relax together.

Then a very dear friend (since 4th grade) asked if she could come visit. Perfect! Then another very dear friend won VIP tickets to a concert in Vegas and asked if I would like to be her date! I discussed this opportunity with some local friends who agreed to watch Brad and started making plans. I would get to do what everyone has been telling me over and over to do: take care of myself. I would see some old friends who refresh my spirit, I would get to bond with my son and I would even have some time for reading a good book and getting caught up on house stuff. Oh how life teases us.

This is where you insert a record playing in the background screeching to an ear splitting halt.

Jim had difficulty on the way while riding in the car at one point getting aggressive with my parents. Then he had several severe psychotic breaks during his first full day away, culminating with police, an ambulance ride to the ER and now a stay in a locked psychiatric unit. In Connecticut. While I am in Virginia. And he is confused. And scared. And alone. And a lost soul. I can only understand about every 3 words he says on the phone. He has had a couple of episodes since he was admitted but over all I believe he is doing much better.

How awful this disease can be. If there is anyone in this world who is NOT mean, angry or violent, it is Jim. Sometimes during the course of our marriage I have been miffed at him for his lack of aggressiveness. In a world around us urging us to show more and more belligerence he has been steadfast with his passiveness. Jim’s soul is as sweet and demur as it gets, yet he has now attacked others, become violent, paranoid, angry, torn a turn signal off a steering shaft and is now saddled with a “one on one” (a person who stays with him 24/7 to ensure he doesn’t hurt anyone). He hallucinated and said things completely untrue. He is another being in the body of the man I have known more than any other for the past 19 years. I am heartbroken just picturing him there, while I am here. Carrying on. Doing mundane things. Living life.

Dinner needs to be fixed. Jim is in the hospital. Laundry needs to be put away. Jim is in the hospital. Brad has track practice. Jim is alone and scared. The dog needs to be fed and walked. Jim needs help. Throughout my entire day, I am in a constant state of back and forth, reminding me my life may seem quiet and simple on the surface as I move from task to task, but the reality is Jim needs me. He is alone and scared and needs me to find an answer. An answer that eludes me no matter how many phone calls I make or how many conversations I have. The task at hand permeates into every cell of my being and each cell chooses to fight back; either struggling to believe there is help and an answer if I can only find it or shutting down and withdrawing. I am not sure yet which cells will win. There is a civil war currently taking place within me.

Now I sit making phone calls. Trying to find a place for him. There isn’t one. I can’t afford to place him in a memory care unit. Do I bring him back to our home? And risk a recurrence in front of the kids? I question each decision I am trying to make. Do I try to bring him home and let him get acclimated and see if he settles down? For how long will this last? If he gets out of control again, then what? I will say, “I should have known.” How would I live with myself if someone else got hurt or he got hurt? Yet, if he remains his usual self, I have taken him out of his home for no reason. I didn’t try hard enough. I didn’t make the right decision. I didn’t do the right thing.

What is the right thing when there are no guarantees or crystal balls? What is the right thing when you know the eventual answer, just not the timing?

Screen Shot 2015-07-08 at 8.02.33 PMMy heart and my whole body are heavy. Thinking right now at all is a burden. I am so tired mentally. I constantly feel as if I could lay down and slide into a deep sleep. I have a streaming thought non-stop:  Jim is in the hospital, Jim is in the hospital, Jim needs help, Jim is in the hospital, I have to figure out what to do. It doesn’t pause. I go about life with Brad as best I can, but I have that ticker tape on repeat in my mind.There is no simple answer for getting him home. We can’t fly him back. The doctor is strongly against us driving him back. (But that is, at this point, our only choice) Insurance will not cover a medical transport. What are our options? When I do eventually return him to Virginia, I have no place to put him. I am still searching. Of course the first question asked  when I inquire about assisted living is how I am going to pay. Then if I have qualified for Medicaid. (I haven’t applied yet, that is obviously on my to-do list) $6,000 a month for private pay until we get approved. Or I can take my chances and have him home with me and the kids. I can try to get in-home care, which I will again have to try to figure out how to cover. And still worry about the recurrence of his agitation.

There is no specific answer for our situation. I know others have gone through this, but unlike most medical situations, almost every single turn with Alzheimer’s Disease is arduous, overwhelming and with no specific plan. We are all on our own. There is no place to turn to for help. No one that will call around to find a bed for him. No one to help with the Medicaid paperwork. No one to tell me exactly what we should do at this very moment. He is to be released to my care and I am to bring him home, to wait to find out if the other shoe will fall. To possibly become an instantaneous news reel about the pitfalls of our system. To be spoken of in what if’s and should have’s. If he wasn’t diagnosed with Younger Onset Alzheimer’s Disease and he became violent like this, would I get help? What happens when someone shouldn’t be around their children for safety reasons? Is the only option jail?

Fortunately for me, I do have a wonderful support group of friends and now readers of this blog. I have people who may not be able to make decisions for me, but they let me know I am not alone. I have help with the kids, I have shoulders to cry on and people who would literally drop everything to help us. How lucky am I? I am so burdened with my responsibility yet I am touched and humbled and amazed at the outpouring of love for our family. It is a feeling of unbelievable gratitude and disbelief. Thank you one and all, from the very depths of my love and sincerity.

In the meantime, Jim sits, alone, passing his time coloring and staring into space. Wondering where he is and where his family is.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (25)

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 (13)

Battles Within

Enjoying Chincoteague Island and thankful for The Refuge Inn! Mother's Day 2015.

Enjoying Chincoteague Island and thankful for The Refuge Inn! Mother’s Day 2015.

It has been time for a new post for quite a while and I have written many in my mind. But sitting down to express my thoughts and feelings hasn’t been able to happen, for many reasons.

The first being I have been down. DOWN. As Jim declines, I decline. At some point,  I have to pull myself out of whatever hole I am in, even if he can’t. Without his help. Without his support or his belief in me. Without any communication about such daring escapades. Without the caring gestures and the simple pleasure of knowing he cares and is by my side. Mentally AND physically alone. It is only recently I have come to realize that dealing with one part, say the mental absence, was doable for a while. But then, there is the nonexistent physical connection as well. (Not just sex, but just a simple arm around my shoulders or hand placed at the small of my back as we enter a room….) The two combined equate the ending of our marriage as we knew it, as we lived it, as we dreamed it. Without either the physical or emotional connection to sustain us, what is left?

I feel as if I am a character in an old silent movie, teetering precariously on a steel beam high above the city, with my arms flailing, trying to keep balanced as my body contorts to whatever way my instability throws me while trying desperately to keep steady enough not to fall to my impending death, far, far, below. It is a symbol of the doom I seem to carry with me, even as I try so hard to focus on all the good that surrounds us daily. I mean, let’s be honest, I have much more on the positive side than the negative side happening in my life. It just seems that one, teeny, tiny negative somehow outweighs all of the positives and makes it beyond difficult to ignore or somehow unable to focus on the good stuff enough to keep myself happy and content.

I have been busy. Busy at very specific times. There have been times I have neglected even the most mundane tasks by deciding I couldn’t do anything besides roll over and go back to sleep after the kids went to school. NOT cool. AT ALL. So, after I would do this, once I was awake and functioning, I would go into some sort of immediate guilt trip of spending way too long in bed when I have many, many important things to get done. It has been a vicious cycle and an uphill battle. I am told not to beat myself up and to let myself have this time to heal and deal. It’s just not who I want to be. But only I can fight this battle. And I am winning. Not at the pace I would like, but still, I am winning. I am aware this is textbook depression. I have started seeing a therapist. I am aware this is normal. And it may be, but for me, it is not acceptable. Under any circumstances. See the sentence above about how many more positive things I have going for me.

As previously stated numerous times: JIM IS DECLINING. Yep. He isn’t getting better, but we knew this was our trajectory years ago. Years. You would think at some point this would all become old hat. Even so, our natural human nature is to always hope for something better to come down the pike. It is hard to keep this positive outlook and positive demeanor while understanding and acknowledging Jim is not getting better which means he is sliding closer and closer to things much worse.

Jim recently told me one of his last wishes (don’t worry, he isn’t THAT far along) was to go back to Chincoteague, VA. We used to go every year for Mother’s Day. Last year we missed it. So, this year, with the very kind help of The Refuge Inn, we were able to go and enjoy Mother’s Day weekend. Taking in the beautiful scenery of Chincoteague and Assateague Islands, Jim was like a little kid. Literally. We had such a memorable and fun time together as a family.

I had been worried if he would be able to do the customary bike ride, but it was no problem for him. I was worried if he would have trouble at the beach, but again, it was no trouble. Just the opposite. He was giddy, and happy and crashing into waves like he did years ago. It was such a wonderful site to behold.

Jim riding on Assateague Island, May 2015.

Jim riding on Assateague Island, May 2015.

We had a grand time. The kids enjoyed their dad and the island and just family down time. I enjoyed it all. And Jim fell into a memory that was familiar to him.

Back to reality. The night we returned: I was starting laundry and the kids were putting out the recycling and trash bins. Jim was confused. He wanted to figure out what was going on and what to help with. This is always such a treacherous place. I asked him to go upstairs and get his shower, but he knew we were all doing “chores” and things around the house. As I sorted the laundry, I heard the front door open and close. Not too long after, Frances came in and told me, “Dad just took off.”

Of course I was alarmed and worried and stopped what I was doing. She told me Brad had taken off after him. It was dark. I was immediately uncomfortable and worried. Frances and I started searching for them and calling out their names: loudly into the neighborhood. It seemed like ages, but in reality was probably only 5 minutes before she had located them. I was torn. Angry at him for doing this to his children and relieved to have found him. And sad. For many different reasons. We walked home in silence.

Later I asked him why he ran away like that. His answer was a simple and honest one: “I don’t want to be this person, I don’t want to not be able to do things and to keep getting worse and worse.” He had tried to run from the disease.

There was nothing else to discuss. I just sat with him and silently wondered why such a good man was being tormented over and over.

This whole life with Alzheimer’s Disease is a constant battle.

Battles with Medicare and finances.

Battles with emotions.

Battles with guilt and expectations.

Battles with loneliness.

Battles with internal desires.

Battles with commitments and timing.

Battles with anticipatory grief.

Battles with science and karma and helplessness.

I know I will be ok. I have to be, right? I have to for my kids. For my parents. For Jim. For my friends. For…me? Do I really care if I’m OK? At what costs will I make it through all of this and will I be able to look back and like the person I was and who I become? Will I still be a good Mom and a good friend? Will I continue to be a good caregiver to Jim (although some days I wonder if I am at my optimal and what he deserves).

Only time will tell. Not having been a patient person, I am learning to soak in the opportunities that come our way while recognizing it may take time before I can truly appreciate or understand the journey we have lived through.

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

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)

Give Them Hell

Jim at the Advocacy Forum. April 2013.

Jim at the Advocacy Forum. April 2013.

To all my fellow advocates:

We will not be at the Alzheimer’s Association Advocacy Forum this year. It with great trepidation and sadness I tell you this, but I have complete faith that everyone else going, who will be there with their purple sashes on, will carry our torch high and will do a GREAT job.

Next Wednesday is Brad’s birthday. I am almost ashamed to say that I came this close to choosing the forum over being at home to help him celebrate turning 11. That is how strongly I feel about advocating for research funding. I talked to him. He told me it was “ok” I could go and he would understand. But the mother in me couldn’t do it. I love being there and seeing everyone and meeting new friends and advocates and feeling like I am making a difference, but when it came down to it; my son is my son and only turns 11 once and I can only do what I can do. There are many others who will be there to fight for our cause. Thank you for sacrificing, traveling and being there. Thank you for telling our representatives this is the most important battle we face for keeping our budget in check and for protecting our loved ones. Thank you for fighting for all of us.

Last year I had a friend ride her bike across country. I wrote about it here.   This is her first Advocacy Forum. Give her a hug, a high five and tell her “hi” for me.

Not to go completely without helping in some way, the kids, (hopefully Jim) and I will be traveling to Washington D.C. not long after the forum to meet with our representatives and remind them of what you all have asked for. So, you could say we are the “clean up crew”.

If you are reading this, and you will not be participating in the Advocacy Forum next week, please contact your Congressmen and women to let them know how important it is to support Alzheimer’s Disease research. Let them hear your voice and to know this is an important issue. YOU can make a difference. Please take the few minutes and be heard.  This is super important for all of us. For you. For your family and for your friends.

I am sorry we won’t be there, but I hope each of you will write to me to fill me in. Write and tell me how you felt and what you learned and who you met and tell me all about everything we are missing.

Then we will see you all again next year!

posted by Karen in Uncategorized and have Comments (3)

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)