Brave?

I love my Pops. Everyone who knows me knows how much I care about this man. People often say to me how strong I am or brave or what courage it takes to face his illness. I never know quite know how to respond to that. I know if the tables were turned and I was the one who was ill my Dad would be there. It is the character you build with the help of your parents that makes you the person you become. My parents had their faults, who doesn’t? They also tried very hard to instill certain values in us girls. Work hard, love with an open heart, be kind to people, listen, be understanding. Give of yourself not because it is expected of you but because want to share who you are with others. Nice counts.

My Dad never graduated high school. He was from an era in time when quitting school to seek a job to help your family was encouraged. I am sure my grandparents would have loved it if all of their children had stayed in school and jumped for their share of the American dream but dreams don’t put food on your table. My Dad has always had a strong sense of taking care of one’s own family. Do what needs to be done so they are provided for. He was a great provider. I can remember him having two part time jobs to help round out his full time job just to make ends meet. My mother was really unable to hold down a job for any significant amount of time. Her mental illness always got in her way. Crippling her ability to cope with every day duties of keeping the house and kids in line. Often my Dad had to be both parents.

My Dad never gave up on my mother and loved her devotedly until the day she died. Funny, he doesn’t remember her now. Sad for me; blessing for him? Who am I to say? I only know in my heart I am glad my mother did not live to see my Pops robbed of his memory. She nearly lost her mind after my sister passed away. I sometimes think that’s why her health declined so fast after Breny died ; she was broken. Both of my parents were clingy after her passing. My phone would ring off the hook. They would often call me to make sure I was Okay. Annoying then, but now I realize how hurt they were by her passing and how afraid they were for me and my other sister. Loss was not easy for either of them.

I deal with my Dad’s loss everyday. He is still here, yet he is not.  As the days go by I know my time being with him, laughing, living, crying and just being his kid are on the decline. He will not live forever despite my best efforts. I have become the parent to my parent. My parents taught me what to do. There is no bravery involved. Only love…and love can do anything. Love the people in your life while they are still here to share it. Dad/Trish

Fear

What are you afraid of?

I have lived with some form of fear, well, I can’t remember a time when I wasn’t afraid. I guess you could say fear has always been on my side. I was afraid of the dark as a child. I was afraid of my mothers’ rage. I was afraid to try new things or to look stupid in front of others. I am afraid of chickens and dolls with faces. I am afraid of losing myself to obesity. I am afraid that some day I will get dementia like my Pops. I am afraid of being homeless, jobless, abandoned.

The problem with fear is that it can be so powerful that you get frozen by it. It is difficult to free myself.  Fear has a way of making you small. I forget sometimes that I am in control of how my day goes. I have the power to turn a bad day around. I am a force to be reckoned with  when I stand up for myself. Being fearful makes you weary in a way that is hard to explain to a person who doesn’t understand what it is like to carry this burden.

Fear …I hate you. I hate how you fill me with self doubt.

 

skip that rock

Thanksgiving is less than one week away. I am struggling with reasons to be thankful. Big holidays are supposed to be filled with relatives and food and stress and love. Intangible things you can’t quite put a finger on, like the smell of that favorite holiday stuffing that makes you miss your Mom. Or the grin that Cool Whip brings to your face just by thinking about it. Or the memory of parades of days gone by like the Macy’s floats, big and grand.

I know that my Dad is safe. I know somewhere in my heart he is better off being looked after; I feel deserted. I have been left all alone. Not by him but by circumstance.  Life is what happens when you make other plans. Thanksgiving is a time for family. Once upon at time I had that. I MISS them. I MISS the hot mess that made them MY family. I hate Thanksgiving; it makes me sad. Thanksgiving should be about the fullness of your life not the emptiness.

I am grateful to still have my Pops in my life. I am thankful I have a hubby who stands by me no matter how bad the storms get. I am humbled to be honored with the Best best friend anybody could ever hope for. I am thankful for all the great memories I can still look back on and bask in the glow of that love. I have so much yet I struggle. I yearn for the simple things that were once part of my everyday life.

Cherish the moments in your life. All of them. Holidays often have moments that hurt. Someone you love may not be able to handle all of the false hopes a holiday tends to pin on one’s soul. I know I used to put too much emphasis on the perfect. I wanted the perfect family, the most perfect meal in the most peaceful, loving, giving atmosphere. I guess nobody else got the memo.

In my family if we made it to the end of the meal in one piece without any yelling or crying it WAS the perfect day. Too bad none of us realized it then. We had some moments. Stuffing on the floor. Gravy boats smashed. Pies eaten by Tuesday. Mom who only ever copped to,” It was just a taste. I swear!” Only thing is she tasted ’til it was nearly gone as if the single pie section she left was evermore than a taste for the rest of us.  Stress of being perfect always made her nuts.

I stopped trying to have perfect holidays after my sister died. Didn’t seem to be any point to that stuff and nonsense. I want to enjoy my life. As messy as my life is sometimes at least I can say I try to live in the moments. Ruined holidays, there were many, taught me to see the humor in everyday challenges. It built a strength in me that helps me to see a difficult time through to its finish, whatever it may be.

Life is like a ripple in the water caused by a rock you just skipped across the surface. Be that rock. Test the water, be alive in your life. Skip along the surface of the water. Be awestruck by the beauty of it. See the ripples you create.  I want my ride to continue on so I can see what adventure is next. Even as I glide I am losing momentum, soon I  will break below the surface and sink to the bottom. My glorious ride will be over. I am not ready to be added to the other rocks at the bottom, left in a heap to be forgotten. Looks like I will just have to get a new rock.

Enjoy the people in your life while they are in your life. I am thankful for you = )

 

 

 

Who Is This Man?

I haven’t written a post in quite some time. I told myself I need some time off to regroup and enjoy my summer. As many of you know I had to place my Pops into a nursing home. Never an easy decision to make. The paperwork long,tedious and intrusive. I have always resisted placing my Pops because I didn’t want to lose him to the system. I have already lost more than I have ever imagined I would. My kid sister and my mother passed away. I have an older sister that I am not close to (my choice). I have distanced myself from her children as well. I can not live with their baggage and try to fix my baggage as well. Growing up in a dysfunctional family environment with no set coping skills will do that for you. My family’s way of getting through tough things together usually involved more yelling than conversation and lots of name calling and blame throwing. Counter productive to say the least. Not a real esteem builder either. I had to learn to accept and like myself on my terms.

I took the summer off from writing so I could find a way to set myself free from feeling guilty about what happened to Pops and I. I have not been handling our new living arrangement well at all. There are things about it I really like. I no longer have to meal plan for him or assist him in his bath. I get to eat supper with hubby every night and mostly I don’t have to worry Pops might roll away from his apartment for places unknown.

Do you have any idea how hard it has been for me to let go? Who is this man,that can’t remember my mother’s name? or that my kid sister had red hair? or that they both died too young and tragically? For my Pops it is a blessing but for me it is a curse. It only increases my sadness not dispels it. Who is this man? Dementia has changed everything about him I knew. This man is my Pops. I love him. I cry for the people he no longer remembers to miss. I cry for all that we have lost. stuff 005I cry because even though I see him whenever I can I MISS the man he used to be.

Dementia Days or Daze?

You tell me. I hate what this disease has turned me into. What it has turned my Pops into. The façade I put up for people keeps me safe; keeps them at arms length. I struggle everyday with the possibility that someone will find out I am a lie. I don’t have all of the answers. I am more lost than found. My heart torn into so many little pieces I am losing track of the last day I felt whole. I would walk away from my life if I knew it meant distancing myself from anymore sadness,pain and disappointment. But how do you walk away from those you love? What kind of a person would I be if I jumped ship just as soon as another deck hand was needed?

I skipped going to see Dad on Mother’s Day because I knew his nursing home would be overflowing with guilty children trying to cram a years worth of visits into that one special day. I went to see Dad this afternoon. I should have just stayed home. All the fresh laundry I brought to him on Saturday gone from his closet. I know things like this happen but everything? Really?

I can’t ask Dad what happened to his stuff. He doesn’t know. He exists in that world of zero accountability. I am just supposed to accept it, laugh it off and move on to the next topic. More often than not I feel frustrated after our visits. Like a carnival ride I can’t get off of.

We are a jigsaw puzzle with key pieces missing. We hold onto the box, our work in progress hoping that one day what is missing will be found. The problem? Dementia reshapes the pieces. The puzzle constantly changing. Only the edges are complete.

If I stopped going to see him would he even know? Could I live with myself? sleep at night? probably not.  I go for him as much as I go for myself. He is all I have left of the family I once knew.  In his smile I see the beauty of our family. It is there in his eyes I see the love he has for me. The trust he has given me. He believes in me. I used to look at him in that same way when I was a child.

For him I am brave. For him I try not to be lost. For him I would give all that I am.

The Power of a Hug

I have never put much faith into a hug. Confining in nature almost claustrophobic for me. I do not have a great personal history with hugging. In fact, I would say it is one of my greatest weaknesses. My kid sister was the only person who’s hug I would accept. She had a way about it. She’d hang onto me like our lives depended on it. Almost as if she knew there was a storm coming. Her hugs meant the world to me because she put so much of herself behind that embrace.

Something has changed in me lately, perhaps it is because my Dad is in a nursing home. I have had a change of heart about hugging. A true hug should be given free of will and with a depth of meaning to it from you for the one you hug. There a few residents where my Pops now hangs out that feel the need to hug me. I hug them willingly. Like small children these souls hug from their hearts. Overflowing with love for someone they once knew. Some days these people think I am their loved one. They ask me about children I don’t have; husbands and grandchildren that are not mine. I go along with their alternate reality the best way I know how by not rocking the boat. People with dementia or Alzheimer’s are still who they used to be somewhere in their minds. Everybody needs love and affection.

My Pops is the same even if his memories falter or the endings to his stories change. I try to hug him more than I have in the past. I think we both need it more. I miss him. I never realized before how much power comes from such a little thing. A hug makes the weary less tired. To the sad it lends hope. To the loved it spreads an untethered joy. To the lonely a sense of inclusion, that someone cares. To the lost a ray of light showing a safe way. Hug someone today.

Scraps From the Past

The project of the week is SCRAPBOOKING or as I like to call it cementing your past. The problem? it makes me cry. It hurts to look through years of photos of Mom and Pops. Grandparents I never met. Loved ones long gone and missed. Somehow this adventure is supposed to be healthy for my Pops. Make him a collage of things past. I just wonder who’s going to pick up my pieces? the ones that fall away from my heart and have broken all over again? I have photos of my kid sister that I won’t share as if somehow by keeping them only for myself; she lives. Odd I know but it is all I have left of her. I am taking part in this scrap booking project because my Dad needs whatever connections he is capable of making to be made. I will put on a brave face for the man who has given me so much.

Question is, what are you willing to do for someone you love?

What Was I Thinking

really? I try to go see Dad everyday. I am his link to his world. The life he once lived in, loved in, laughed in. I can tell you with all honesty it is the toughest part of my day. I hate to cry. I hate feeling open and vulnerable. Yesterday was hard for me. I had my afternoon coffee fix and prepped a bag to bring to Pops. I kissed my hubby and off I went. Dad was not in a good place. The nurse on duty pulled me aside to inform me that Dad had been grumpy and short (my Mom was grumpy and short but I think she meant Dad was out of sorts ?)

Pops contacted a cold from one of the other patients who likes to kiss the boys and make them cry. There is nothing I can really do about those behaviors so I let Pops be. The nurse I spoke with assured me Dad had been getting cold meds and seemed to be getting better except for his demeanor. She asked me if I had any ideas as to why Pops suddenly seemed angry. I am not sure how much any of you really understand dementia. A person who lives with dementia has their own sense of reality and most likely you are not invited so you have to learn to watch for the signs. Any time my Dad is in pain or has a fever he gets angry, really angry. I informed the nurse that Pops has a history of bladder/urinary problems and infections and sometimes that is enough to send him to Anger Land.

I feel like the outsider now. If pops were home I would have simply called his Dr. and scheduled a urinalysis and a meet and greet to check his vitals. Doctor appointments change when your loved one lives in a nursing home. Someone on staff calls a nurse. The nurse does a quick assessment and then decides whether or not to contact the Dr. or nurse practitioner. Tests were ordered for Dad. I think he is having a urinary tract infection or a flair up with his rheumatoid arthritis.

I left Pops shortly after his supper. I left distracted, angry, scared and plain SAD. I jumped into my Jeep and blindly drove away. Away. Far away. I was nearly into West Boylston before I realized I had no idea where I was going or why I was going. I can’t outrun my Pops’ decline. It is what it is. In my face, part of my life everyday. It sucks. It wears me down and leaves me feeling lonely and vulnerable unable to fix what has gone so wrong.

 

Does it Rain in Your Shower?

As the stream of hot water cascades down my body I begin to relax. The tension that I have been carrying around in my muscles begins to ease. I stand there with my back against the flow of water. The heat feels amazing and for the first time I cry. It rains in my shower. I am so sad that I can’t share my sorrow. I feel like I have no one to talk to. I have anger I don’t know what to do with. I feel defeated and small. Even when life seems to be moving along a set path the wind changes course and the path moves. Its subtlety goes unnoticed until it blindsides me. I try to pay attention as closely as I can. I am constantly making lists. Dad’s needs, hubster’s needs, my needs. What both households are out of. A list of bills to be paid, when to pay these bills when I can, if I can. The last eight years have not been an easy ride.

Dad’s dementia has pretty much been of a certain level. He is pleasantly confused.  More often than not he is happy and a tad confused. He doesn’t know what day of the week it is. He doesn’t remember how my Mom or my kid sister died. My Dad thinks that they are out somewhere having lunch. Who am I to correct him? Ignorant bliss. In my humble opinion, this is the ONE blessing of dementia. On the other hand, he forgets my birthday, holidays, anything of importance. His reality is unlike those around him. His world is only about his wants, his needs, his anger. Dad gets angry. It doesn’t happen often. Usually it is over trivial things that have importance only to him.

I couldn’t find him. I called his apartment that morning on schedule. By 11:15 I was beginning to worry. I called the neighbor. The horror thoughts raced through my mind. Maybe he fell and couldn’t get up; maybe he felt faint and then passed out; maybe he had wandered off: maybe he died. After the fourth ring the neighbor picked up. She scarcely got out a hello before I blurted out, “have you seen my Dad today?” Yes she had. Right before my every morning call he had an episode of weakness and a sudden feeling that he was going to pass out so my Dad( king of can’t remember shit )dialed 911 unassisted. She had tried to get over to his apartment before the first responders came but they beat her to his door. She tried to reach me but my cell went straight to voicemail. After the third try she left a voice message of her own for me to call her ASAP.

The paramedics took him to the hospital ER and thus my life, his life changed forever. He was admitted with the possibility of a mild case of pneumonia. In all likelihood my Dad would be just fine  after a few days of meds. He would once again return home to live in harmony with his altered reality. That, however; is not what happened.

My mother died June 11, 2007. I started taking care of my Dad the day of her funeral. Maybe that’s the day his soul gave out. He couldn’t handle that she passed. My Dad loved my mother with his whole being and when she died I think he broke. He has never been quite the same,not for one minute or one second of any day. As time marched on he got a little more forgetful, a little more fearful, a tad bit more frail. I took on more responsibility. I made out the grocery lists. I made sure his pills were matched out correctly. I made out the bills. I took him for haircuts. I took him to all his doctor appointments. I shopped for his clothes. (Yes I have great taste) I took him to church. Just me and Dad against the world. Until this last trip through the ER.

My father, whom I have cared for and loved and did my best to keep safe was being taken away from me. Okay so maybe that’s a little harsh. A case manager and a social worker at our local hospital felt that my Dad was now too frail of body and mind to be allowed to be released on his own recognizance and needed to be remanded to the Commonwealth of Massachusetts. To be placed in a facility with around the clock supervision. Yup, you guessed it, a nursing home.

Once upon a time in a land far far away there lived a giant of a man. My Dad
Once upon a time in a land far far away there lived a giant of a man. My Dad

I can’t lie. I have thought about it. I am getting tired. I am not Wonder Woman. I wanted to fight the good fight. I didn’t want to give up on the man who never gave up on me.

Does in rain in YOUR shower? It does in mine everyday.