I wanted to write this post before Al gets home so I can look at him and be happy and smile as if nothing is going on. Actually my insides are filling like I ate a bowl full of cow crap. If I went into the bathroom I am sure I would have no problem being sick to my stomach.
But instead I am drinking the hottest coffee my innards can take and puffing a way on my cigarettes.
Actually today was a good morning. Nice and calm. Got Al up and the morning went smooth. All weekend I have been playing mind games with myself. I guess it is the devil actually playing with me if I am real honest. I am a firm believer of God but yet Satan manages to squeeze his slimy ass into my thoughts.
The game I have been wrestling with and winning on my own cheating methods is called, Al is not really that sick. The doctors are wrong. Maybe we don’t really need Hospice. It is a really fun game. You look at Al and you have seen more smiles this past several days. He is talkative and carries on conversations with me better than usual.
I blamed his foul attitude on the lack of proper care at the nursing home. I blamed the too dry food they served. I blamed them for the lack of personal attention. I was winning this game in my mortal mind and I actually spoke to the Hospice nurse today when we had our meeting.
I bragged to her about how Al got his new truck over the weekend. How he has held it and talked about it hours upon hours. I bragged how he has smiled. She sat there and was taking notes from what I stated and she smiled, but it didn’t seem like a genuine smile.
You know those smiles I am talking about. The ones that you wonder if they were glued on with Elmer’s glue? I dismissed it because after all, she was jotting on her note pad. She then turned from my friend/nurse and became a drill sergeant.
She asked,” Is he urinating ok?”
“Yes”
“Is he having any problems eating?”
“Well some, a little choking and I had to feed him off and on this weekend, but no big deal.”
“Has he had any problem with sleeping?”
“Oh no, he sleeps a lot.”
“How often do you think he sleeps in a waking day?”
“Well, um, probably about fifty percent while he is here through the week nights.”
“Has he had any problems with his memory?”
“Well, um, a little. He asked for his bed time snack right after breakfast. He told me he had just finished supper.”
“What about his vision?”
“Well I have noticed that he couldn’t see the remotes properly. One time he couldn’t see the table that he hangs onto when he gets in bed, but I think it was only twice over the weekend.”
She is jotting to the point I am thinking about offering her one of my own pens in case hers runs dry. The questions are over and she reverts back to the friend/nurse. She says that she is now ready to go see Al.
We go and knock on his classroom door letting them know we are here. Al looks at the nurse who he has seen at least six or seven times now and ask, “who are you?”
The nurse looks at me and then smiles at him and tells him who she is. She proceeds to take his vitals. She hesitates on his heart area, re checking two different places. My own heart begins to race slightly but I ask no questions as she doesn’t say anything either.
After vitals are done she checks his ankles for swelling. They are always swollen but no more than usual. She checks his eyes and then she checks his hands and fingernails. She chats with him a little bit about his new truck and then she and I excuse ourselves from the class.
Once out in the hall we usually chat alone for a few minutes. Stating when she will be back. Making sure we wish each other good days until the next visit. You know the routine my friends. Chat, chat, kiss, kiss, hug, hug.
Instead she said, ” I know you want to believe that Al is getting better. Whether you use Hospice or not is your choice, but Al is declining.”
I am thinking, what? I just told you about all the chatter and smiles this past few days.
She goes on to say that I am in denial. Not me, I never deny anything. I always like the truth except for today.
She said that Al’s memory is starting to slip a little more. She was surprised that he didn’t know her. Well, that is no big deal, sometimes I forget my own name. LOL
She said that Al’s heart didn’t sound as strong. Uh-oh
She said that his hands are taking on a different look. His fingernails were gray half-way from the moons. She said his pinky finger had a disturbed look to it, that it was a little dark. Oh, I see
She told me her job is to make Al comfortable. She went on to say he is comfortable here at home and used to his class at Day Program, but no, the illness has not started to get better.
She said that I better get things settled within my own mind because Al’s breathing and heart are changing too. Her last words to me before we said goodbye were, he is following the path as most patients follow that are on Hospice.
I smiled at her and she gave me a big hug. Tears formed in my eyes. She left and I sat in my car and lit a cigarette. Taking off down the street it is hotter than hell here and the humidity is terrible. I didn’t even notice it as all I could do was make sure my eyes were clear enough from tears to drive.
My visit with Hospice was not what I expected today. Instead she burst my bubble.
*hugs tightly* oh terry, I know you want al to get better. I do too, so do others who have followed your blog. *hugs*
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thanks so much my friend, but I don’t think it is going to happen
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I can’t hit the ‘like’ button, for I am so sorry that this hurts so very much..
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thank yo Mimijk, I am still trying to adjust I guess
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It’s okay to hate the messenger, and that’s the hospice worker. I know, however, that it’s the message that puts a bad taste in your mouth, not the person. Although your brother is still declining, I sincerely believe that he is happier and more fulfilled because you are there for him at home. Did bringing him home provide a miracle cure? No, but how nice that Al can be with his sister as his days on earth start to run out.
Bless you Terry, Irene aka Boomer98053
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You make a lot of sense. I guess you are right. Al is more content here at home, and I guess this is what showing. thanks Cheryl, your words help
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I really and truly don’t mind the name Cheryl, but my mother would probably insist that you call me by my given name of Irene.
Bless you.
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Oh my, I am so embarrassed. I am so sorry Irene
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Dear Terry – Within days of Hospice coming in with Vic her quality of life improved. I was convinced that she was in remission. I blogged on it and if you are up to it maybe you can have a look at it. Please do not stop Hospice. They are treating Al’s symptoms and he is more comfortable than he has been in a long time. I believe Al being at home is also contributing to him looking so much better. He is loved and well cared for. Lots of love and gentle hugs my friend. There is no return from the road you are travelling on now. http://tersiaburger.com/2012/10/15/remission-15-10-2012/ http://tersiaburger.com/2012/11/12/how-did-it-get-late-so-soon-dr-seuss/ http://tersiaburger.com/2012/09/14/palliative-care/
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I don’t know what came over me Tersia. Why did I set myself up for sadness and pain? I was a fool. I knew better but let his smiles and chatter get the best of me. I will read your post but maybe tomorrow instead of tonight. Big hugs my friend. I will keep Hospice because it is obvious they are helping Al
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Like mimijk, I don’t feel ‘Like’ is appropriate, but I understand the feelings and the path. Went throught it 4 times so far and watching it as a friend right now. We can say we understand what might happen and we can try to accept, but we always seem too want to believe better thoughts. You are in my thoughts and prayers…. Charles
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thanks so much dear Charles. I should know better to play the mental game but I guess I am stupid at this point or in denial as the nurse stated
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Just in us as much now as ever to want forever….
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I guess it is our nature
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My prayers continue for you both. Wouldn’t it be wonderful if the Lord came back very soon? His timing is in His hands, but it would sure be a blessing!
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for Al it would be wonderful, for me it would be so sad
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Why would it be sad for you?
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I guess I am selfish as I will miss him
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So sorry to hear that Terry. I know how hard it is. We all thought my friend Lisa was getting better as well when she passed away. Hang in there.
Ivonne
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am clinging to all of your words, you can count on that
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If we were together right now, I would give you big hug too! You are giving Al what he needs, love, peace, happiness, please accept the same gifts for yourself, whenever and whoever offers them. Peace.
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ok I will start with your hug, I really need you as my friend
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Terry Terry Terry, I know how much you wish for a miracle for
Al but honey don’t torture yourself. His end is near and you must face that, but think how wonderful you are making Al’s last bit of time here on earth.You are doing what you wanted making his last days peaceful and comfortable, treasure this time build the positive memories and try not to dwell on the negative for both of you. My prayers are with you both love and hugs my dear one (((xx)))
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thanks Len, I am really trying. I guess I just fooled myself, because he seemed so happy
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so easy to do when we want with our heart so badly for the inevitable to not occur. I pray for your strength and I know that it will be devastating to watch him detoriate as he will. I am watching it happen to my hubs and it breaks my heart knowing I am going to lose the only one to ever love me justthe way I am but I believe as long as I stay in the word daily and pray multiple times daily for His will and His plan I know I can make it through I hope that you rely on your faith and become stronger inthe faith to be able to handle what is to come. Love and hugs (((xx)))
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I am so rude, I wish I wasn’t posting on Al like I do realizing you are going through your own problems at home, I am so sorry I didn’t think
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Hullo Terry,
Your not stupid in turning your eyes away from what is unpleasant. Scream if you need to. Be blessed daily every smile you witness, every conversation Al has with you. All our days are numbered sweet one. Enjoy them to the fullest. {{hugs}}
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Bless you for your healing words my friend. I feel so foolish and worse is deep inside I knew better
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No need to feel that way! We never know when death will happen. Al is happy TODAY and all is well in his world -that is all that matters. How do you eat an elephant? One bite at a time. Today you have had the blinders removed and because of such a wonderful weekend together the brightness is overwhelming. Just breathe. You are grieving and that is SO ok to do! ❤
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thank you. It does feel like grieving. I never thought of it that way. It is like I am starting to prepare when I don’t want to for what ever happens down the road. I am so glad you and I are blogging friends. hugs
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Terry I know it must have been horrible for you to hear what the nurse said, but I think she is looking out for your best interests too in preparing you. Patients often get better for a time when they come home. They also often get much better a day or two before. I”m so sorry you’re in such pain, I wish your whole WP world could just come around you right now and stand with you and hug you. xo
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me too my friend, me too
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hugs xo
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Your emotions emanate through your words. My heart aches for you. I pray that God continues to strengthen you on this journey my friend. *hugs*
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thank u so much my friend. I hope you are doing well tonight
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Last night was a bit harder than most, but I know that like everything else in life, this is for a time and soon enough I’ll have better days. I hope you and Al have a good day today and make some great memories to add to the ones you already have 🙂
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I understand very well what you are saying. I have had my moments like yours also. I know from my own experience life gets better. It just takes time and keeping yourself so busy you slowly get through it. big hugs. thanks for the wonderful comment my friend
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I’ll be praying for you, my friend.
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thank you so much Tony, you have no idea how much I appreciate this
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One day at a time. If he’s happy today, concentrate on that and enjoy it. Stay in today…. don’t run off to the future.
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ok, I will try really hard
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Awe damn it to all Terry. I am so sorry my friend.
Acceptance is never ever easy. It is a downright uncomfortable state of mind to be in initially, so we try to talk ourselves around it. Emotionally at the onset it can be a good thing, give yourself some time to slowly acclimate to the truth. But to stay in a stage of denial, though comfortable for a short period, will turn around bite big time like the devil.
Denial is an alluring lover, so what ever you do do not beat yourself up for this. You are living purely on instincts, Doing the best you can with the tools you have.
You are a strong woman with great resolve, I can hear this in your words about drinking the the hottest cup of coffee you could stand. Resolve that you don’t know how or where you will find the wind to keep your sails moving but you will.
I can feel you are conflicted and trying not to feel completely numb, hence the hottest coffee your innards could stand. That which you want to throw up is the dissonance you are feeling amongst all your grief.
Some days its too much at once.
Gentle hugs today my friend. ~
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I am so glad you stopped by my friend. I was actually thinking about you and wishing we could speak and here you are. Thanks for being so kind and wonderful to me. you just amaze me at your spirit and love for others
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Terry, you and Al are always in my prayers. Sending comforting hugs your way. Skye
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thank you so much Skye. so nice to be able to speak to you again. I want you to know that I love prayers
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I am following you every day……always here for you. =)
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thank you Skye, this makes me feel better
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Oh Terrry, I am so sorry! I couldn’t click on like, because this is not the news that anyone wants to hear. I will have you and Al, firmly in my thoughts and prayers tonight. You are the most important part of Als life, and the Angel he will look to keep him safe and comfortable. I am sending you my fondest hopes and brightest light.
You are not alone as long as you walk with god. He will surely show the way.
Oh, and I am here, just a click away if you need me.
~Cliff
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thank you so much Cliff. I do cling to my friends and their words. They help me to keep moving forward. you are a real genuine friend
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I just wish that I could really be there for you and Al. It is hard to know that my friends are going through so much turmoil and heart break. and I am stuck here just reading about it.
Huge hugs to you both,
~Cliff
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I wish many times that my blogger friends lived near me. Life would be so much better
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It is a confusing time – hugs to you Terry and to Al.
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thanks Julie. How is Ants?
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He seems to have plateaued – no better but no worse.
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that is good news in my eyes. it gives you some time to not have to readjust your emotions
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there’s nothing wrong with being hopeful, the hope changes now is what needs to shift. it is hard and anyone who has experienced loss understands that. now the hope needs to be about the days moving forward. making al comfy and that may be easier if you can accept he is going to be passing on. pain control is more important than other concerns. i applaud the nurse for trying to bring you to reality. you have my heartfelt wishes for you and al to move along this path together in peace.
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thanks so much my friend. I am the one who needs to be changing, most definitely. Al is still doing well but I now realize it is all the pain medications that are helping. How are you doing?
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Liking does seem inappropriate, Terry.
I cannot imagine what amount of confusion and denial is churning in your head. Whatever has to happen, shall; meanwhile, it seems Al is happier than he has been most of the time.
I hope for the best for Al and you. Keep strong, Terry.
E-hug!
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Oh thank you so much Ritika. I do admit I am the one fighting what is happening. I was so sure he was not as bad as the professionals were saying. I am trying very hard to live in reality and just enjoy his smiles and chatter.
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Dear Terry, I have nothing more to add to what the commenters have commented here…all I have is a *warm comforting hug* and to let you know that I think of you and Al so often; you are in my prayers.
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bless you my friend. friends like you are hard to come by, and I cherish our friendship. Hugs for your new day today
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hihi…..mind follow me??
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I did my new friend
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Ok! Thank you very much!!!
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Glad that Al smiles more and hug from the nurse 🙂
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me too Yoshiko
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🙂
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Do you mean the bragging is from satan?
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not the actual bragging, Satan plants thoughts in our minds. He uses this to make us brag and boast instead of humble ourselves in front of God. For we are nothing without God, nothing at all. We can do nothing on our own without failure. It may look good in the beginning but in time we will see that God’s plan was much better if we had only followed him instead of letting Satan distract our thoughts
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True enough
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I can only give you hugs and cuddles and say that I feel for you and think of you! You must never give up hope and continue to enjoy every smile Al gives you!
I am too far away to sit with you and have a good cry, as that would be good to do!
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thankfully moment after moment heals and today I am award, definitely, but am focusing on what Al does instead of what my heart sees
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Courage! You are in the process of giving Al the most loving gift ever. Lovingly accepting the truth. (And with a neat sense of humor, I might add.)
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thank you so much Mona. If I don’t add the spice of humor, will I not dry up and become bitter to the ear…
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