Update 11/28/15-11/29/15

Yesterday, my¬† dad would barely open his eyes. He ate a little, as long as it was soft (pudding, applesauce, mashed potatoes). He drank quite a bit. His blood sugar stayed very low, so my mother and I gave him sugared soda to keep it up. He was clammy for most of the day and his body temperature felt cold to the touch. He had many hand tremors that would sometimes spread to his face. His hands stayed busy for a majority of the day: rubbing his face, scratching his head, touching his lips, feeling the blanket. Vocally, he wasn’t very responsive; he could muster out “yeah” or “no” most of the time when asked a question. My mom and I got a smile and a laugh out of him once when we were telling him how handsome he is. During the evening, he kept reaching his hand out like he saw someone standing at the foot of his bed; my mom and I asked him several times, “Who do you see? Who are you reaching for?” but he could never respond. All day, he seemed peaceful, but very busy at the same time. I believe there’s a lot going on in his mind that I can’t comprehend. From what I’ve read online and from talking to the hospice nurse, this is a time of transition for him; his soul is between his physical body and the afterlife. Maybe he’s seeing passed loved ones waiting for him on the other side, or maybe angels or messengers are talking to him about what’s happening. All that I know is, what he has in the physical world is no longer of much importance to him. As much as I want him to open his eyes and tell me that he loves me too, I’m afraid he will never be able to do that again.

Today, my dad hasn’t opened his eyes at all, nor will he eat or drink. He has woken a few times earlier in the day, but only for a brief moment. He is less responsive than yesterday. His nurse stopped by this morning to take a look at him; all of his vitals are good. She told us that if he doesn’t want to eat or drink, don’t force it. If he needs something, he will let us know. Usually when I go over to his bed to hug and kiss him, he will wake up and I can tell that he knows I’m there; a few moments previous to writing this, my presence no longer woke him up.

Dementia is a roller coaster of a disease; one day, someone can be alert and understand what’s going on around them, but that can quickly change. Every day, even every hour, can be different from the last. In my dad’s case, I don’t think he will have anymore good days. From the signs he is showing, his body is trying to shut down. This process is different for every person; sometimes it takes days, and sometimes it takes weeks. It’s important for my mother and I to stay with him so he knows he isn’t alone. It’s important for us to tell him we love him, even though he can’t respond. It’s important for me to thank him for being a wonderful father and letting him know how important he is to me. It’s important to me that he leaves this earth feeling as admired as a king.

 

If you find yourself taking care of someone who is ill and/or dying, these tips may help you:

If pills become too hard to swallow, don’t buy a plastic pill crusher because they are more trouble than they are worth. Order a mortar and pestle (I got mine off of Amazon for cheap with free shipping) and your pills will be completely in powder form.

If blood sugar is low and needs to be quickly brought up without food, a sugared cola with a couple tablespoons of simple syrup works wonderfully. Glucose tablets can also be crushed up and put in a sweet drink.

If the person who is sick will not open their mouth to eat or drink, try gently touching the straw or spoon to their lip so they can sense that something is there.

While taking care of someone who is ill, to avoid getting them anxious or upset, talk them through everything that you are doing; while changing their diaper, tell them every step as you are doing it. When feeding, always say “here’s a bite/drink” before putting the spoon or straw up to their mouth. Even if they can’t comprehend what you’re saying, a familiar voice may be comforting.

Never argue or debate. Never.

Try to avoid showing any negative emotions in your voice if at all possible, whether it be anger or sadness. Talk slowly and gently.

As blood flow slows down, a person is more likely to get cold; make sure you keep enough blankets around.

If something isn’t absolutely necessary, don’t do it. It puts more work on yourself and adds to their level of discomfort.

Don’t hesitate to call your hospice nurse, home health nurse, primary care doctor, on-call nurse line, etc. If you are every scared or have a question, that is what those people are there for. This is a scary time, but being informed can make it a lot less scary.

 

 

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Update 11/27/15

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.

Thanksgiving

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.

Reaching Out A Hand For Help

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.

Thank you.

-I apologize for my prolonged absence; life has been a living hell difficult as of recent.-

I have countless things to say, but no words in mind to express those things.

I will let my thoughts flow.

I am filled with sadness, worry, guilt, anxiety, apathy, and anger. I feel as though I am a voodoo doll and some higher power has a vengeance against me; my body has been set ablaze and my energy has been drained. My mind, well, might as well be noodles for someone to feast on. I walk around feeling displaced and drunk, but yet I am completely sober. I worry about myself, about my father and mother, but what good does that do? Nothing. I lie in bed, drained, depressed, sick. Why?

Since childhood, I have longed to be happy. I have never been like the others I see around me. The others are happy, upbeat, charismatic, optimistic, giggly, and excited for the next part of their day. I feel more than them. I see more than them. Their auras, their personalities, their demeanor.. I can feel it. I meet someone and see their smile and hear what they tell me, how they want me to see them, but I see so much more. “It is both a blessing and a curse to feel everything so very deeply.” I am blessed to be able to experience the world in a way that the others can not. I am cursed because the world is overwhelming to my senses; a typical day is exhausting. But, I do not wish to change.

I would rather be aware than to be ignorant and happy, like the others.

~

Demons to Fight

There are too many emotions. What to say? What is most important? What makes the most sense? What can people relate to? Right now, I do not care.

I always feel like I am not good enough, whether it be a lot or a little. Always, I fall short. I have an issue with people criticizing me without reason or warning. I do not understand those who are so ill mannered and mean to others; it seems these people are always ahead in the game. I refuse to lower myself to someone I am not just to succeed. My depression is a constant ache, my obsessive compulsive thoughts only making that pain worse. Anxiety? Let me worry about my depression and OCD. Bills? Fuck, everything is late. I am never good enough because I refuse to sacrifice who I am to get ahead. When will I be enough? Never? Okay, I will learn to cope. My immune system seems to be working against me, as if everything else was not enough. Fibromyalgia, which my doctor suspects I have, sends pain through my body. Is it in my mind? Maybe. The pain is still just as real. My bones pop when I move, constantly readjusting from the pressure of life. My body is weak and tired, and my mind the same. Every day, I wake up and act as though I am fine. I am going to have a good day. I am not depressed, nor anxious. It is absurd that I am thought to have Fibromyalgia.. I am too young, too healthy. Reality sets in before I even remove my head from my pillow. I am not okay, and it hurts to admit that. I am flawed in a way that most people can not understand. I am flawed in a way that society does not accept. My depression, anxiety, OCD, and whatever the hell else is wrong does not care that my disabilities are seen as miniscule. Depressed? Well, just get up and do something; it will go away. Anxious? Why do you worry about everything? Think about something else; get out and do something and it will go away. OCD? You must be crazy, just stop. You are having a panic attack? Just calm down and come into work and get your mind off of things. You are on medication? I do not believe that helps. Have you tried yoga? I just can not believe depression and anxiety are actually caused my a chemical imbalance; the medication you are on surely is not helping.

On a good day, I am still struggling. On a bad day, it is all I can do to appear ‘normal.’ On a ‘normal’ day, my thoughts still consume me. Mental disorders are real, and those who discredit them are monsters. I do not seek sympathy, but I do seek understanding.

I say that I am okay, because in MY reality, I am. A good day for me may be equivalent to one of the worst days of your life.

Tomorrow, I will wake up the same as I did today: worried, anxious, sad, mad, lazy, avoid-ant, antisocial, introverted, eccentric, excited, achy, tired.. This is who I am, and I fear, who I will always be.

I will not apologize for the cards I have been dealt. Nor should you judge others from being a different card than you are. We are all part of the same deck; we are all important and unique. We do not have to understand one another, but we do need to accept that life has given us all different demons to fight.