Some days, like today, I feel like the world is caving in around me. All of my progress seems to run away and I’m left empty and tired. Sleeping never helps, although it can be a good escape. It’s a good escape if my dreams stray from turning into nightmares that wake me in a cold, abrupt, sweat. Tears wash my mascara onto my acne-prone cheeks as I sit, in the fetal position, in my bathroom floor. I don’t know why, but that’s always seemed like the best place to cry, especially on a pile of dirty towels I’ve let accumulate over the week. Sometimes, I can hear his voice in my head so perfectly that it’s like he’s whispering in my ear; some days, like today, I have to strain to hear, “I love you too, sweetheart.” That’s my only comfort.. that, and remembering his smile. Some days, like today, I feel like he should still be here; I yearn to put my head on his left shoulder and smell his comforting and familiar scent. He’d wrap his arms around me and I’d tell him how much I love him; he’d tell me the same in return. I’d give anything for one more hug, although I know one more would never be enough. Some days, unlike today, I feel like he’s been gone an eternity. Those days are a little easier, though not much. Even on those days, it’s usually easy to hear his voice in my head. Today, I’m sad, empty, broken, and lost. Tomorrow, who knows. I’ll end my day missing you, only to wake up the same; maybe tomorrow will be an easier kind of pain.
I’m at a crossroads between who I am and who I want to be; I see everything I want, and I also see everything that I’ve been molded to be. I like certain things from both of the roads; can I pick and choose? Can I take the best of both routes and make a new road? That is, if I’m even strong enough to abandon the road I know so well..the me that I’ve grown up knowing. My habits, fears, desires, obsessions, anxieties, dreams.. are those things concrete? At this point, am I able to change some of the strongest qualities about myself? I aspire to be happy, but maybe that isn’t a part of who I am. Sadness and exhaustion seem like a standard part of my personality. I’d like to have a loving, honest, and faithful marriage one day, but can I? Can I be faithful to someone for a lifetime? Can I love the same person endlessly? I want to be religious, but will a religion ever actually make sense to me? I want a career, but I struggle to finish school. I want to run away for a while, to someplace unknown to me, but I am chained; I am chained to where I’ve grown up. I need to love myself and be okay on my own, but I constantly cling to a romantic partner; if I don’t feel wanted, then I feel nothing except for incompleteness. I need my father, but he is gone; no matter how hard I cry, he isn’t coming back. I need to know that he can see me and hear me when I speak to him, but I can’t. I need to know I’ll see him again, but how can I know that? Faith isn’t enough when it comes to family. So, for now, I stand at this crossroads and take time to examine where I need to go.
My father passed away on December 1, 2015 at 1:38pm only a moment after I had read “My sweet father,” aloud; my mother was holding his left hand, and I was holding his right. He went peacefully with the two people who meant the most to him, his “girls.”
Over a week later.. This still isn’t real. I built a very strong emotional wall while caring for my father the last month and a half of his life; I had to focus 100% on his needs and had no time or energy to deal with my emotions on the matter. That wall is refusing to come down. Saying “your father is dead” is no different than saying “the sky is purple;” it isn’t real. I don’t believe you. My dad can’t be dead, because I’m only 24. I need him. He has to give the guy of my dreams permission to ask my hand in marriage. He has to walk me down the isle. He has to see me graduate from college. He has to see me be successful. He has to remind me to rotate my tires and change fluids that I don’t even know exist. He has to meet his future grandchild. He has to tell me that he loves me and that he’s proud of me. He has to fuss at me for being stubborn. He has to tell me not to get anymore tattoos. He has too much left to do.. He can’t be gone.
I need you, daddy.
It’s approaching midnight, and my eyes are heavy from crying. My dad has slept all day today, being woken every couple hours to see if he will eat or drink. He won’t eat, but he will drink some. He always wants to eat, so this is new; this is scary.
Today was the beginning of his hospice care; my mother and I sat down with his new nurse and learned about the program and how they are different from home health. Hospice is a lot more help, in all aspects; my father’s care now focuses on making sure he is comfortable, rather than trying to heal him (because he’s past that point). His medications were changed around, as most the ones he took no longer do him any good; pain medication and a mood stabilizer (for anxiety and agitation) were added. A nurse will be available for use 24/7 if needed, but otherwise, one will come by the house a couple times a week. A bath aide will also be here several times a week to help my mother and I. There are also social workers, volunteers, and chaplains available for us to use. Hospice provides physical, mental, emotional, and spiritual support for the patient and for the family.
As for my father, his new nurse said that we will be able to tell a lot within the next few days. If he wakes up tomorrow and is willing to eat and drink, then wonderful. If not, then we need to prepare ourselves for the worst. It could be just a bad couple of days, but then it could also be nearing the end. With this disease, it’s hard to tell; every day can be drastically different.
My father hasn’t been as responsive as usual today; out of the twenty times I’ve told him “I love you,” he may have responded twice. His eyes stayed closed even when taking a drink or feeling my hand on his face. He’s coughing and has a rattle in the back of his throat. His hands shake and he fiddles with the covers around him. His blood sugar has been low all day, whereas it’s usually high; tonight is the first night in years that we haven’t given him insulin.
I pray that he is peaceful and not in pain. I pray that he knows how much my mother and I love him. I am overwhelmed with emotions ranging from sad to angry; I’m not prepared to lose my father and I’m angry that I’m going through this. I’m angry that my mother is going through this. I’m angry that my father has to end his life in this condition. No one should have to go through this. Losing parts of a loved one day after day is a terrible sadness and requires a lot of strength.
I hope and pray that tomorrow will bring my sweet daddy a better day. I hope I can see his beautiful eyes and radiant smile and hear his contagious laugh. I always pray that he continues to know who me and my mother are.
I will update tomorrow on his condition. Thanks to everyone who has kept my family in your thoughts and prayers. If you are in need of prayers, please comment on this post and I will keep you in my thoughts.
As I’m sitting here with my sleeping father, the smells coming out of the kitchen are almost too much for me to bear. This Thanksgiving, it’s just my father, my mother, and myself. Although I’d prefer a full house full of those that are close to my heart, I’m thankful that I can spend this holiday with my father. Does he understand that today is a holiday? I’m not sure. I am sure that he knows how loved he is and that my mom and I are always right here.
My dad woke up in a good mood today, although he isn’t feeling the best (he’s recovering from some sort of respiratory infection). He’s always very cooperative when I give him a bath and change his bedding. If you’ve ever bathed, dressed, and changed linens on someone completely bed ridden, you know how difficult it can be. When he is able to help turn himself, it makes my job a lot easier.
He ate a good breakfast of whole wheat pita, spread with peanut butter, and a side of lightly salted tomatoes. He loves to drink milk or apple juice with his breakfast; unsweetened tea, grape juice, sugar free fruit punch, and the occasional Coke Zero are his favorites throughout the day. On rare days, he is able to give himself something to drink and feed himself small handheld snacks. I know that him being able to do something for himself makes him feel proud, so I always encourage him. If someone is able to do something for themselves, even slowly, let them. Let them hold onto what independence they have.
This Thanksgiving, I will be enjoying my meal standing by my fathers bed while I feed him. I’m thankful that my mom feels up to cooking today, as she’s been recovering from surgery. I’m thankful that I can spend this holiday with my dad, because I don’t know how many more we have together. I’m thankful to have plenty of food to eat (delicious food, at that). I’m also thankful that my mom makes sure to prepare everything vegetarian so I can enjoy it all (except the turkey, cluck cluck). Today, I am just thankful. Although, I wish I had a big loving family, I don’t; I have a small loving one that is unconditional, and they mean the world to me.
I encourage us all to focus on the positives in our life, not only today, but every day. If we focus on the negatives (which can often be overwhelming in my life), then we are only going to bring ourselves down. Find something, or someone, that gives you hope for a better tomorrow and hold onto whatever that may be. Appreciate and love the ones around you, because you never know how much a simple gesture can mean to someone. Reach out to someone and let them know that you care. Smile at a stranger. Take a deep breath and be thankful for everything that you have lost because what’s lost has given you what you have today; what we have today is the only thing that we know for sure, so be grateful. Be grateful for today and hopeful for tomorrow.
I’m going to keep an online journal of my care-giving experience with my father in hopes of helping someone else going through the same experience. I am 24 years old and an only child. My mother and father have been together for over 30 years. My father is now 78 and my mother is 53. I have recently moved back in with them to help my mother with the task of caring for my deteriorating father.
My dad has chronic worsening dementia; he is also handicapped. He spends his days in a hospital bed in the living room. He enjoys watching TV, specifically Blue Bloods, Law & Order: SVU, NCIS, Criminal Minds, Walker Texas Ranger, and In the Heat of the Night. Most days, he sleeps the majority of the time; on his good days, he is awake and bright-eyed and enjoys laughing.
It has been less than a year since my dad was diagnosed with dementia; I’m still trying to understand why and how the disease has progressed so quickly in him. Two years ago, he was the same dad that I’ve always known. Somewhere between then and now, everything has changed. It started with several trips to the ER, numerous trips to his family doctor, and researching things at home- my mom and I knew something was happening, but we had no idea it was dementia. Not long after, he was too much to handle; he became crazed, confused, and violent; he was diagnosed with dementia and was put in the geriatric psych unit at a local hospital. From there, doctors and nurses worked with him during his waking hours, medications got regulated, and physical and mental therapy got started. After two weeks, he was sent to a nursing home for rehabilitation. My mom and I wanted to do everything possible to get him to be able to come back home. A couple months later, we were bringing him home. During his stay in the nursing home, the house was remodeled to be handicap accessible and I moved back in.
My dad has been home for about 3 months. He started off being able to walk (using his walker, of course), go to the bathroom, go to the kitchen table to eat, etc. As of today, he is bed ridden. I change his diapers, bathe him, feed him, and tend to his every need. This disease is the most quickly deteriorating illness that I have ever seen. When I wake up every morning, I’m unsure of how he will be. Sometimes, for days at a time, he can barely keep his eyes open; he will barely eat or drink. Other days, he is awake and happy and has the appetite of a hungry school boy. Communication is a constant issue, but again, some days are better than others.
Being his care-giver has taught me a lot. If you or anyone else you know is in a similar situation, remember that the most important thing is patience. Never yell or raise your voice. Never get in a hurry. Never ask “why.” Never talk quickly. Never ask open-ended or complicated questions. Never argue. Never debate. Do one thing at a time, and if possible, allow your loved one to know what you’re doing. While giving a bath, let him or her know exactly what you’re doing. Make a joke or smile at them so they that what is happening isn’t so bad. Their mood and reaction is based a lot on the emotion that the care-giver is emitting. If the care-giver is upset or tense, that is going to be sensed and transferred. Often, depending on the person being cared for, things can get frustrating; just walk away and take a deep breath. The person with dementia doesn’t want this anymore than anyone else does, so be patient and be kind, as you would with a child.
I plan to update this several times a week. If you or anyone you know is going through this, please, share this with them. It’s nice to know that you aren’t alone and that there are ways to handle going through this. I’ll also gladly talk with anyone that needs help or a shoulder to lean on.
I’ll be updating soon. Thank you.
As of recent, my life has took a turn towards my worst fear: my father getting old and sick.
I am twenty-three years old; my parents have been together for over thirty years. My mother is twenty-five years younger than my dad; my mom is fifty-three and my dad is seventy-eight. Growing up, my dad was not young and playful like all of the other dads I saw with my friends. He was in the prime of his business career, busy working in the garage, always running about- things any healthy fifty-something-year-old would enjoy doing. Up until less than a year ago, my father has had no significant health issues; he was still active, his mind was sharp. Then, all of the sudden.. things changed. Things changed drastically. My mother and I, scared and confused, avoided showing any fear. My father, for a long time, denied anything was wrong. The reality of the situation was obvious to everyone except for him.
My worst fear, as a child and as an adult, was this happening. It was seeing my dad go downhill. It was seeing him using a cane or a walker. It was seeing him forget how to form sentences. It was seeing him forget things that he has always known. It was seeing him forget how to add up money to pay the cashier. It was seeing him lose the ability to drive. It was seeing him in diapers. It was seeing him old.
I am reaching out for help. Tons of adults face going through this with one or both of their parents, just not at my age. In the beginning of my adult life, trying to figure out who I am and make my place in the world, I just cannot seem to grasp what is happening. I need more time to pass before I can deal with this, but sadly, I do not have time on my side. Anyone, regardless of age (although it would be nice to communicate with someone around my age about this), please.. let me know how to cope. Give me tips on how to process this. Help me accept this as reality. Any kind words, stories, advice, prayers, thoughts, etc. are more than welcome.