In this life, LOVE is most important.

I am sitting by my father’s bed listening to his labored breathing. His vitals are no longer good; his heart is working over time, he’s feverish, clammy. He can’t eat or drink. He hasn’t opened his eyes at all. His nurse said he has a couple days, no more than a week. My mother and I are giving him morphine around the clock so he remains comfortable.

A chaplain stopped by today to talk with me and my mom; we all stood and prayed over my dad’s bed.

I’ve learned a lot about life the past month that I’ve been home with my father. I’ve learned who cares about me and who doesn’t. I’ve learned to make sure I let my emotions out in a healthy way. Mostly, I’ve learned what’s important in this life: love. As my father is lying here dying, the only thing I can give him is my love. I can no longer feed him, give him a drink, bathe him, talk with him, laugh with him, or even watch TV with him. All he can accept from me at this point is my unconditional love for him. I could be offered a million dollars to leave his side, and I wouldn’t.

Watching a parent die, especially being as young as I am, is one of the hardest things I’ll ever go through. Dementia has stolen everything from him over this past year; the father that I grew up knowing has been gone a long time. I feel so many emotions. I’m sad that I’m losing my father. I’m angry, very angry, that I’m losing my father. I’m thankful that I’ve had him in my life this long, but I hate that I won’t have him longer. I’m anxious. I’m nervous. I don’t want him to stay in pain, but I also don’t want to let go. If I ever get married, he won’t be there to walk me down the isle. He won’t be at my college graduation. I won’t be able to give him a grandchild. He can’t answer questions I have about my car. He won’t be able to make sure the first house I buy is in good shape. He won’t be able to do any of the things that I need from him. The most terrifying of all is that he can’t ever tell me that he loves me again.

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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.

 

 

You Will Never Be Alone

Your body feels cold.
My mind is on fire.
You don’t open your eyes.
I can’t keep my eyes off of you.
The rumble in your throat doesn’t seem to bother you.
For me, it’s death reminding me of this fate.
Although you are still, I can tell you are busy.
Your mind is crossing over between here and your soon to be home.
You have loved ones on both sides.
You will never be alone.

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.

Life Well Spent

As I am drowning in my tears, you are floating on a cloud. I see everything I am about to lose as you see everything you are about to gain. Though I am holding on tight, you are trying to let go. If you love something, let it go. But no. I have never known life without you in it. I have never awoken a day without you. You are a part of life that I do not know how to live without. While you are drifting away, I am trying to figure everything out. I hope that when you close your eyes, the beauty is almost too much to bear. I hope that when you drift off to sleep, your passed loved ones are there. I hope that when you leave this world, you are happy, comfortable, and content. Most of all, I hope you know how much love you have left behind. Your life has been well spent.

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.

Caring for a loved one with Dementia/Alzheimer’s

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.