A world without Jim?

 

Visiting Monticello,  July 2015.

Visiting Monticello,
July 2015.

Please, please, make all of this go away. The pain. The worry. The decisions. The agony of watching Jim slide away as we try to cling to him. As he tries to cling to himself.

It hurts. So bad. And I can’t stop it. From hurting me, him or the kids. The kids. As a parent, all I ever want to do is protect them and keep them from hurting but this hideous disease blocks me from protecting them. It is taking their father from them and they are front row witnesses. All I can do is stand helplessly by as their pain grows, his death grows closer and I frantically work at picking up pieces as they fall faster and faster until I can no longer keep up. They see me struggling to find a solution. They watch as he tries to speak and they can barely manage to put together his mumbles into a clear thought. They help him with so many daily activities during the day they can’t ignore his plight. They are entrenched, as we all are. I feel as if I am failing them while I am failing him. I can’t help him. Can I help them?

I see him look to me for help, I see him struggle to speak, to get dressed, to brush his teeth, to bathe and shave, to help around the house…..he deserves so much more, so much better. How dare this happen to such a wonderful person? How dare I fail him? Fail the kids? Fail myself?

I thought the grieving process would get easier but the truth is the grieving process is only subliminal for a while and then it re-emerges stronger than ever. Just when I think I have a handle on letting him go and moving on, becoming a single parent, making all of the decisions, being Mom and Dad, figuring out finances and facing my loneliness head-on and accepting this fate….I look at him, see is frailness, his desire to stay with his children enabling him to watch them grow up, his failure to manage the most simplest task and the disappointment on his face….what am I doing wrong? What can I change? What can I stop and divert?

The world keeps spinning around us. But my world has stopped. Friends have disappeared. But in truth, not only do I understand, it is ok because he is constantly within ear shot and I can’t have a private conversation anyway. My world is selectively smaller these days and yes, it hurts, but there is nothing surprising going on. Friends have called and I have not answered because I can’t really talk. It would be a superficial conversation and I am not up for that. I am barely up for a real conversation, but putting on a front has never been my style and at this point it is impossible. I feel as if I am in a prison, trapped and controlled by something no one is regulating.

I now wake earlier to assist him in the mornings. One morning recently, I got him in the shower, helped him, got him drying off and went across the hall to wake Brad up. I spent a few precious moments caressing his sweet face and hair and just having a private morning moment with my son. When I went back to the bathroom, Jim had found a razor and “shaved”, cutting his chin and leaving large portions completely untouched. And that is where we are.

I constantly feel pulled between taking care of him correctly and taking care of the kids correctly. They both need me and deserve better. But it is impossible. I am torn at all times and I know the answer. While I fail them both, I fall further and further. Jim and I discussed this several years ago when he was first diagnosed. The kids come first. But it is harder to do now, when it is actually upon us. I want to do right by him but I want to be the parent our children need as they lose their father.

It is just so sad to watch him. He is a ghost of his former self. It doesn’t have anything to do with my recent burdens. It is seeing him struggle to try to do a simple task and not be able to and to know at one point he had so much pride and was capable. Not that it would be easier any other way….I am just hurting.

Yes, I am depressed. Friends have suggested medication. My therapist has recently started mentioning it as well. But I feel like I have a right to be depressed. I am in a depressing situation. And I need to feel the hurt and the pain before I can move on, if I ever am able to move on. Right now I can’t fathom ever moving on past this pain. But I know that being medicated is going to numb some of the pain and I need to try to hold off as long as possible. I am not opposed to it, I will probably eventually take something to help me, but for now, I want to try to stay off anything that will deter me from understanding the pain my children will feel, are feeling and have felt. It is ok for me to hurt, I don’t need something to ease that pain, but I have no doubt that at some point it will be time to get some assistance pulling myself out of this funk.

This is a most agonizing journey and I am hopeful that at the end of the road I will be a better person and somehow survive strong enough to continue to help others. I am amazed at the number of people coping with this same plight and hurting and struggling as we are. How is our country able to stand strong without helping the weakest? My friends, there is a fight brewing, and I hope you will all be with me. It isn’t about money and it isn’t about class or race. It is about doing the right thing and about common sense. It is hard to imagine this is an issue, but it is. It is also hard to imagine a world without Jim in it.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (23)

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 (17)

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 (26)

Survival of the Fittest

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

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

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

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

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

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

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

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

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

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

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

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)

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

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

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

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

Frances and Brad in Alaska, July 2014.

Frances and Brad in Alaska, July 2014.

 

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