Used to be Mine

While listening to this song by Sara Bareilles (I am a musical emotional hostage on many occasions) I realized something: I am scared. Really scared.
Most people who know me would never think of me as a person afraid of anything (except snakes): I am strong. I am outspoken. I am opinionated, I am tough and emotionless. But the reality is:  I am not. Any of these things. I am alone in a big world that can be scary. Sometimes a little terrifying. I found a man who saw me for me and loved me anyway. I found a man songs are recorded about and love stories are written about. He loved me with all of my faults, my weaknesses and my inconsistencies. Despite everything, he loved me. And he still does. And it hurts. It hurts to have had that kind of love, the kind that some never have, that people long for and dream of, and to watch it slip away and realize that it will never be again….it is not just scary, it is crushing. There is nothing I can do to save him therefore saving us. I can’t apologize for something done. I can’t take back something said. There is no “fixing” this. There is no making up or forgiving and working it out.  I am not an easy person to love. I don’t just go along with things. I question. I wonder. I dream. I am passionate to the point of annoyance. And Jim saw this in me and liked it. He liked me and wanted me. He chose me. I chose him. And something else bigger than both of us chose him to leave first. How? How could anyone think he should leave first? He was such a great Dad. And a great husband. And a great man. On all accounts. Jim gave. Jim was good. Jim was kind.

Alzheimer's Disease, frustrations,

Jim and I at the Grand Illumination in Colonial Williamsburg, Dec. 2011.

Jim made this world a better place because he was a hard worker, a giving man, a forgiving person and an accepting human. Just what we all need. And yet he is being put through an unfathomable demise. How cruel. How unfair. How awful for everyone involved.
I no longer know who I am. I question each conversation I have. Sometimes I can’t even recall what I said or who I said it to. I am not just lost; I am not even searching. I used to think I was…searching for something I won’t find and not a clue what I am looking for. I am searching for the man who loved me, who made me ok with me. I know I am supposed to be a woman who doesn’t need a man to love herself or who needs a man for anything and I don’t….but the truth is…Jim completed me. He made me better. He made me like myself. He made me a better mom, a better friend, employee, citizen. A better everything. And without him, who am I? Am I still deserving? Am I still likable? Am I still a good person? He was head and shoulders above me in so many categories and without his companionship and guidance I am on shaky ground. How can I live up to his standards without him showing me the way? His strength and unwavering belief in me is a lot to live up to.The trust he has shown me not only throughout our marriage, but especially as he has succumbed to this disease…unquestionable trust. It is almost suffocating. The decisions I have made on his behalf and his lack of argument are to be commended and should be held in the highest regard. Even while this disease ravages his brain, he trusts me to always do what is in his best interest. Amazingly so.  He brought out the best in me and it is now up to me to find my own strength, my own North Star, my inner GPS system. No one to remind me when I fail that I will be ok and that I will some day succeed. That I am capable. That I am beautiful despite the wrinkles and gray hair. That I am still interesting and wanted.
Without getting angry, without making excuses, without Jim…I move forward. Not at the pace I would normally. Not with the same spirit and drive. Without my partner…without my biggest fan…without the comfort of knowing no matter what mess I have made, no matter how terribly I have failed, I will have someone who still thinks I am awesome and competent. Someone who will wrap his arms around me and make the world disappear………no more. I am alone with my own failings and my trials and tribulations. I can only reach deep to a place I have never thought I could or would have to go and forge ahead. Without Jim’s inspiration and acceptance. Without his smile. Without his wisdom. Without all of the many things he brought to us all through his quiet example. I love you Jim and I miss you so very much. Thank you for being you and allowing me to be your wife for 18 years.

Brad, Jim and Frances. Nov 2015.

Brad, Jim and Frances. Nov 2015.

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)

Phantom Lover

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I’m in love with a man who cannot love me back. I think of him all day, every day of every week of every month. From my first moments lying in bed in the morning until my last tired thoughts trying to fall asleep late in the evening.

I long to call him with each new idea, thought and life event that transpires. I want to share each amazing feat Frances and Brad conquer. I want to call and ask him what he wants for dinner or if he can sneak away and grab some lunch. I want to hear about his day and carry on a conversation sharing our thoughts and desires. I want to laugh together at something funny on TV or sit in the darkness of a movie theater, jumping at the scene on the screen or wiping away tears as our hearts are tugged by the story unfolding before our eyes. I want to feel the excitement of catching up on episodes missed or planning an evening without the kids. I want to know he is thinking of me, as I think of him. But he is not mine. He is in a different place, with another life and is not interested in my fantasy world that includes him because his world does not include me.

I cannot have him. I dream of him. I yearn to call and ask if he would join me for a weekend away. Just the two of us, locked away in a cabin in the woods or lazily reading books while listening to ocean waves crash feet away.  Would I be satisfied with just a weekend or would I be left in an even larger state of isolation and frustration?  I have lost hope for a note in his handwriting, confessing how much I mean to him and how he can’t stop thinking of me. Does he? Does he think of me? Does he long for my touch as I long for his?

I am a woman with unrequited love.

There are no date nights. There is no lounging in bed too long. There are no passionate kisses and gentle touches. There are no arguments or the fun that comes with making up. There are no loving gazes, no words unspoken with just a glance. No plans for a future together or shared dreams to make come true.

Just me, recalling the way his hand touched my back as we walked through an entryway. Just me, wishing we could stroll arm in arm, chatting and feeling the warmth of friendship and love all rolled into one.  Just me, wondering how I will ever get past this loneliness and longing.

Although I ache for him, thinking of him constantly and wanting to share each detail of my day, he is not mine. He belongs to another. I am just a fleeting thought, someone to ponder about whenever I pop into his mind. Daily? Weekly? Surely when something triggers a reminder of me. There are fleeting conversations, but with each one I am left wanting more. I need more and he cannot give me more.

I instinctively pick up the phone to share something and realize the emptiness of that dial tone. When I am angry or sad I want to reach out to him and hear his voice. He calms me like no other. When something wonderful happens, it is him I want to tell first. I want him to grab me in his arms, pulling me into his chest, smelling his scent, feeling his strong arms holding me tight, taking all the anger away and reminding me I am special and loved and safe. I need him to make me feel beautiful again. I need him to make me feel smart and funny and worthy.

There are no cards. No flowers. No surprises. No late night intimate chats. No snuggles on the couch. No breakfasts in bed. Nothing but the connection I feel, the hunger I have, the dreams that will never come true.  I love someone who is a ghost.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)

Nap Time

Screen Shot 2015-10-05 at 11.33.22 PMI have nothing. Nothing to say. Nothing to feel. Nothing to do. I am numb. I am going through motions and I am doing the obligatory foot in front of another, but the reality is I am dazed, confused and paralyzed.

I went to visit Jim two weeks ago. He got agitated, which I quickly learned meant he needed to go to the bathroom. So, I took him to the restroom and he pulled down his pants and WHAM!! Adult diapers. On. My. Husband.

The next week, I stopped by to visit. I couldn’t find him so I asked the two people working his unit where he was. They said he was just there. So, they start looking room by room. After a few minutes, Jim is found. In a room with the door closed, with a person in their bed and Jim in that persons shorts and one sock and nothing else. Jim’s clothes and shoes and socks were on the floor. And the shorts were wet. And Jim had no clue he was in the wrong room or wasn’t dressed.

So, I got nothing. No words of wisdom. No fancy antidotes or metaphors. I have a new me. Being a shocked wife. Being a mom of two children, taking them to visit their father in a home with people 20 – 30 years older and him not showing much emotion or interest. And them laughing at the residents stealing walkers from each other and repeating themselves and seeing a world that none of their peers witness. There isn’t an ounce of perspective that has prepared me to become the judge, jury, executor, pardoner, appeals attorney and bailiff. I have nothing, yet I am everything. To Jim. To our kids. And to myself. There is no person to keep me straight. To help with my parenting decisions, my financial decisions, my daily decisions and my personal decisions. It is all on me. I have nothing to help with the loneliness. The isolation. Really. I am my own island, mostly deserted, and I am afraid that I am slowly getting used to it.

Not really what I signed up for but nothing a nap can’t help.

I am ashamed. Ashamed that I have taken more naps in the past two months than I have in the past 10 years. I am ashamed that my paint is peeling off my house. I am ashamed that I pretty much didn’t wear make up through the entire summer and because I didn’t, I chose to hibernate.I am ashamed I have missed countless birthday and reasons to celebrate or support others. I am ashamed I have not been able to master the clutter in my home for months now. I am ashamed my children have had to fix their own meals many times throughout the past several months.  I am ashamed that I have realized only too late that there is no more time to take the videos or pictures or have conversations with Jim that should have been done. I thought I had but there will never be enough to overcome the new memories that are taking over. Memories of the new Jim.

He is moving on. Without me. He is progressing and losing his ability to speak, write or communicate. I have lost him while he is living. I am alone in our bedroom. I am alone late at night. I am alone in my thoughts and feelings and emotions. I am alone at social gatherings and dinner parties and ball games. I miss him so and at the same time I want nothing more than to move on. I want to leave the pain and agony behind. What an awful spouse I am to even think this. I long for him and all he was even as I wish I could just move away to a new place and start over, leaving the hurt and worry behind. I can’t. I can’t leave him, our kids or the friends who have surrounded us with love.

Maybe I will go away for a week and call it even. Maybe I will wait until the kids are out of the house and I will disappear into the sunset. Maybe I will just stay where I am and dream for a different ending. Maybe I will do a lot of things but certainly not while I am taking a ridiculous amount of naps.

Jim and I never had the perfect marriage. But we always had each other and the knowledge that we were in this for the long haul. We knew that we wouldn’t leave. I am not leaving, but I am not with him either. He is five minutes away and I am struggling to understand what has happened, where I am going, what I am doing and what I should be doing. Nothing about this situation is traversable with ease, yet I must navigate carefully, so I don’t one day look back and regret any decisions, impact the kids negatively, cause stress or harm to Jim, and most of all, cause unforeseen and irrevocable damage.

I am constantly wondering and second guessing….  should I make the kids go see Jim? Let them decided? Bring him home for a visit? Leave him be? Bring him to our favorite places? How much should I try to keep in his world while he is moving on to another place without us? I struggle each day and when I can’t move past whatever it is I am fretting over I usually decide to take a nap. And when I awake, I realize I haven’t gotten the myriad of tasks done that I should have, now I am an hour behind on whatever it is I could have been doing and I berate myself for not doing what needed to be done. But naps are sooooo good. They let me forget my problems, even if only for 30 minutes.

My new self  isn’t much different from my old self: Worrying about the kids, about Jim, about the future, the past mistakes, the present mistakes, and how to keep from making futures mistakes. But now I tend to shut down. Take a nap and come back to it another day. Now I can add in where I  worry about all the stuff I am not doing because I am taking a nap.

I am better than this. Jim and the kids deserve better than this. I will be a stronger. One day.

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

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)

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)

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)

Happy What?

Ice Skating, Dec. 2014.

Ice Skating, Dec. 2014.

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

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

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

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

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

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

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

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

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

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (12)

Help your Caregiving Friends.

Jim carrying the tree to our vehicle at the tree farm. Dec. 2006.

Jim carrying the tree to our vehicle at the tree farm. Dec. 2006.

It’s that time again. You either love it or hate it. Few and far between are the ones with no opinion. The Christmas season brings back so many wonderful memories, it is hard to not become sentimental at the first notes of a favorite carol or feel as if something is missing without eggnog in the fridge or white candles in the windows. While all of this is remarkably picturesque and the stuff movies are made of, there is a lot of pressure and stress that tags along for the merriment.

So, I have decided to try to help all of the friends and family for caregivers of dementia patients. I am sure this list could have quite a few more things added, but this is what I have right now. As soon as I hit “publish” I will think of ten more things.

First of all, if you are taking the time to read this, you care and you are commended for being a supportive and concerned friend. But, (there’s always a but, right?) as much as you want to help and as much as you want to be there for your friend, it is as impossible for you to entirely understand what they are going through as it was for you to do so before you had children (or grandchildren). There is just no way to convey the enormous emotional and mental overload that comes with both. So be patient and let them seem forgetful and let them be late without glancing at your watch and let them forget to thank you for the wonderful dish you dropped off. They are grateful, but they think at the wrong times to mention it. And to those reading this who have “disappeared”…..don’t worry. You will be welcomed back with open arms. Don’t be embarrassed by the amount of time that has gone by; for most caregivers, days run into weeks that run into months and they aren’t really 100% sure how long it has been since you two last chatted anyway.

So here are the beginnings of some tips for friends and neighbors of caregivers. Please feel free to add your own in the comments section.

What a wonderful surprise this holiday decoration was when my friend dropped by to hang it on our front porch. That is the Christmas spirit….

What a wonderful surprise this holiday decoration was when my friend dropped by to hang it on our front porch. Words don’t convey how special this simple item now is to me.

  • Just be there. As their loved one progresses, it is lonely anytime of year. But during festivities and social events and times of sentimentality, life can be bittersweet. Just having a friend to be present is a huge gift. It could be just hanging out together, or it could be watching a tv show or calling or sending an e-mail or dropping by to check in or…..ok, you get the picture. Let them know you are thinking of them. It helps. A lot.
  • Help with decorations. We just went and cut our tree at the same tree farm we have been going to for 6 or 7 years. Love this tradition. It is our tradition. I can’t change that. I don’t want to change that. But this year, I had to come inside, get the scissors, (I had asked Jim to, but he brought them to the backyard first and then brought them back inside because he didn’t see me out there) cut the twine holding the tree to the roof of our van, put on the gloves and lift that tree and carry it to the bucket I got out and filled with water and I set it up and…ok, you get this picture too. Right? You know what? I don’t mind doing all of this. But I did it with Jim standing by watching and I knew it hurt him because he knew he should be doing it and it hurt me because I felt the same way. It was not a moment of triumph but a moment of inner-sadness. While I was trying to hang some lights out front, to keep that tradition alive as well, a wonderful friend popped by with a surprise; a decoration for our front porch. Not only did she bring it by, she hung it up and asked if she could help me hang the lights and garland.
  • If there are children in the home, ask if you can take them shopping for the caregiver. Or, better yet, ask the caregiver if you can borrow their loved one for a short time and take the patient to shop for the caregiver. If they are in a home, could you grab a little something the next time you are at the store, wrap it and drop it by the nursing home with a note it is from “Jim”? Can you imagine the wonderful feeling that would bring and the change in a day and a change in an attitude that could bring?  I no longer really care about opening presents Christmas morning. Yes, it is nice to a have something to unwrap and be surprised about, but really and truly, I know it would mean so much to Jim to do this for me, without me being the one to take him and to help him pick out something. A friend took Jim last year to pick out something for Frances and for Brad. My parents took the kids to pick out something for me. It doesn’t have to be the same person doing everything. Just do what you can to help in a way you are comfortable with. You might have to get creative, there are so many scenarios a family could have, but if you are able, please try to bring some Christmas spirit to the situation.
  • Help them help themselves. I want so badly to bake cookies, decorate, send out cards, visit friends, wrap gifts, sing carols and watch night after night of old holiday classics….but I just can’t seem to be able to figure out what I am doing. I’m not saying bake the cookies for them, but maybe see if you can stop by and help them. Or help them with cards (I am ashamed to admit we haven’t sent any out in years and now we only receive a handful) or ask them if they can sit with you and watch A Christmas Story (trust me, they need a good laugh). Just setting aside the time and making the effort and commitment to do these things will pay off because they will be so glad they did. And having your help will make it even more special.
  • Please do not stop inviting them to your annual party. They know you are still having it. They know they used to go. They know the only reason you haven’ t mentioned anything is because you have no idea what to do. Invite them anyway. Let them tell you “no” or let them find someone to stay with their loved one so they can join the fun. That is how much it means to them….they will pay someone and work hard to find someone to “sit” for them so they can attend. Better yet, be the friend who doesn’t care about going to said party and offer to sit for them so they can go catch up with friends and neighbors. This type of socialization and fun can be the difference between depression and happiness. Can you find a way to include them in your fun? If you are going to view holiday lights, can they tag along?
  • On that note, offer anytime to just come sit with their charge so they can do some holiday cheer. Whether it be dropping off gifts to friends or going to a movie or dinner or out for some holiday shopping ALONE, that is a gift to them all upon itself.
  • Don’t forget, when the New Year comes, think of them and invite them over or out or come by to help ring in 2015. And while you are at it, tell them how much you have missed them in 2014 but that you understand. Make a resolution (and stick to it) to visit them or contact them more regularly because your friendship means so much to you. It means as much to them, but they are just too overwhelmed to share that with you. Honestly, that is the best gift you could give. It doesn’t matter if you are ashamed because you fell off the face of the earth when they became engrossed in caregiving. It is never too late to come around and admit your selfishness and inconsideration and to make amends. They probably feel guilty for not calling you more or trying to reach out to you too. Relationships work two ways, but at some point there is always a person who gives more and a person who takes more. I have learned I am in the stage of taking more and it is a hard, hard, hard thing to admit and to do day after day. If you were previously the one who was usually a giver, you know what I mean. If you are a friend who usually takes, it’s your turn. You have to believe me, they miss your friendship and will most likely welcome you back with open arms. They didn’t stop coming round because they wanted to and it had nothing to do with not wanting to be your friend.
    Jim lifting Frances up for topping off the tree in 2010.

    Jim lifting Frances up for topping off the tree in 2010.

    Just give them a hug and be grateful for another day, another holiday season and another year together!

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (3)

Looking for the Easy Life

Jim wearing his Air Force blues with Frances and Brad for Career Day at school. Nov. 2010

Jim wearing his Air Force blues with Frances and Brad for Career Day at school. Nov. 2010

Sometimes in life, nothing seems to go right: lines are long, rain comes with no umbrella in sight, a drink spilled, having to stay on hold so long you miss another important commitment, you start to fix a recipe only to realize you don’t have a key ingredient…. Little things out of synch add up to entire days that feel as if the whole world is against you. It is difficult to look at each tiny annoyance as just that; an insignificant bump in the road of life. They all seem to run together to pull you towards a negative thought process and in return, a negative outlook and eventual sour attitude.

And then something happens. Stars align in a good way and your luck changes: a parking spot opens up in the front row at Costco, you win a drawing, someone you haven’t seen in a while gives you a call or better yet they stop by for a visit, the kids laugh instead of argue at the dinner table, work flows easily, you drop your phone and it doesn’t break…. Things fall into place seemingly with no effort. It is something you could get used to, but you know better. You know it is temporary and to enjoy it while you can. There is always a shadow lurking just out of sight and you are completely aware of its presence.

That is how I feel. I am teetering on an uneven, unstable cliff. At any moment, all of the good things that happen for our family can vanish and we can tumble, freefalling into nothingness, at any second. With me at the helm. Me in charge. Me being blamed if it happens. Me knowing that I am guilty of not stopping the inevitable from happening. Even though it isn’t my fault Jim has this disease, it will be my fault if I don’t keep our family from losing everything and it will be my fault if the kids have long term psychological problems and it will rest squarely on my shoulders if something unexpected happens to Jim.

With all of this weighing so heavily on me at ALL times, it seems a wonder I haven’t had some sort of nervous breakdown. Recently, I have felt like I might. I have felt the tension in my body. I have recognized warning signs and become aware of the pulses in my mind and muscles. I am cognizant enough to understand what is happening and that changes need to take place. I have the personality that lets me believe that I am capable of anything. If I don’t already know how to do something, I can figure it out. I can learn, I can adapt, I can do whatever is necessary. But I can’t. I can’t sustain this life. I can’t work full time hours that are dictated and not flexible, follow up on paperwork and appointments needed for Jim, pay the bills, clean the house, cook the meals, grocery shop, work in the yard, do the laundry, drive to lessons and practices, check homework and sign and duly note whatever slip of paper that is sent home this week from school and, somehow, through all of this manage to look like I am doing ok. I’m not. I’m not ok. I have a husband that will tell me he has taken a shower and washed his hair when I can clearly tell he hasn’t. I have a husband that lost his wallet two months ago (again) and I have to take him (again) to get a new i.d. I have a husband who can’t figure out how to put the covers on himself at night. I have a husband that has the best attitude in the world but can’t stop himself from making comments to the kids that can be hurtful and antagonizing.

So, I was trying to figure out what I should do about work and the kids and Jim and everything when life happened. Jim has slipped just a tiny bit more, but enough that I know I need to be here with him. If I am not, someone needs to. He can perform tasks, but needs guidance and oversight. It is time for a change.

Today, I can’t explain why, but I was upset and in a bad mood. The kids were getting the brunt of my force and Frances calmly told me,” Don’t take it out on us just because you are mad at Dad.”

And it hit me. It hit me like few things have. I wasn’t mad at him. I haven’t been mad at him. All the yelling and frustrations….it isn’t anger. It was recognition and it was sadness and it was being scared and most of all, it was helplessness at witnessing this great man succumb slowly to a death sentence I can’t argue away or buy a solution to or fight hard enough for. It was seeing him lost and confused and unable to perform a simple task that he would have been able to do a few months ago. I wasn’t mad, even though it certainly seemed that way. I was utterly broken and petrified at what I was witnessing.

As I looked at Frances and Brad, I saw the questions on their faces. Why was I upset with them when they really hadn’t done anything wrong? Why was I taking my frustrations out on them? I made the decision to be open and honest and share my realization. As I told them I wasn’t mad, but very, very sad and explained why, the tears came so unexpectedly. I forced myself not to sob, but I couldn’t keep them from my eyes. They seemed to get it. By being open and honest with them, they realized they were witnessing part of my mourning and my personal grief at the loss of their father.

Jim, Frances and Brad. Tagging our Christmas tree, Oct. 2014.

Jim, Frances and Brad. Tagging our Christmas tree, Oct. 2014.

I am not working this week.  I am pursuing options for Jim. I am not sure what will happen with my job. I know I can’t afford to quit and honestly, I don’t want to. I need a job that allows me to focus on something other than my own pity party. I need something that forces me to interact with others and shower and get dressed and put a smile on my face and fake some happiness for a time. I need that. But, I need to be able to answer the phone and attend appointments and have time to organize a family of 4.

I used to feel like I was turning into a single mom. And I kept repeating in my mind, “How do these single moms do it? Why can’t I? There must be something I am missing.”

Then a friend pointed out to me, “Karen, you are not just a single mom of two kids. You also have a third child who is home all day and who isn’t growing up to take on more responsibility, but is becoming more of a responsibility, a liability and a ‘what is going to happen next?’ How many things get broken and lost and half done that you must go behind and fix, find or financially figure out? Most single moms don’t have that extra burden.”

Friends save us. Family save us. Love hurts us and ultimately saves us. Grief rips us apart and time allows us to adjust accordingly. Alzheimer’s Disease forces you to grieve over and over again, relying on those friends and family to reappear as needed to enable us to do the adjusting that will keep us from shattering and unable to be saved.

posted by Karen in Early Signs of Alzheimer's,Early Stages of Alzheimer's Disease,Uncategorized,Younger Onset Alzheimer's Disease and have Comments (20)