Hi my friends. Today was a little different from other days. Al woke up after a restless night. He seemed alright but soon after broke into an ocean of tears. This went on for over two hours. He was asking for forgiveness, I don’t know why. He was naming off relatives, phone numbers, old jobs.
It was like he was revisiting a movie of his own life. He sobbed harder than I have ever seen him. It scared me, I couldn’t help it. I had never seen him like this before. I called the minister from Hospice and he paid a visit.
Whenever this minister, Bob, comes Al calms down, and once again this happened. Ever since the minister left Al seems to have accepted his own death nearing. I was told that Al is in the process of dying, what ever that means.
Al asked for different people. He started off by asking for my son, who came to see him. The two relatives in our lives that although I have forgiven, still make me very sensitive when I hear their names.
But Al was adamant about speaking to them. I finally gave in for Al’s peace of mind. I located the phone number in Florida and will make that phone call in the morning. The other relative I called tonight and Al was able to speak to her over the phone. The aunt is also paying a visit to Al within the next two days.
Al cried like a baby upon hearing her voice. After the phone call ended he told me that this was his last request. I feel it is nearing, a gut feeling I have. Changes have happened. Al’s tremors have ended.
His eye lids no longer work. The MSA has taken the eye lid muscle and weakened it. He can open them in the mornings but by afternoon he can no longer do this. He has told me how much he loves me and Rhino.
He has made many comments about how I will be after he is gone and I have answered him as honestly as I can, letting him know I will be alright. It is as if he is saying goodbye. His breathing has changed. He struggles and his swallowing has been effected. I can see that he is struggling to swallow anything.
I pray with all my heart that he is taken soon. My heart will break into pieces. I will miss him terribly, but he will be out of pain. He keeps telling me his arms are glued down, but the truth is, the brain is not telling the arms to move so they seemed locked along with his body contracting.
The only person he has been asking for is our half-sister. Although I have pleaded with her to come see him, I can not make her do it. I had to tell Al that I am so sorry but I just can’t make this request happen.
I told Al he is the best brother I could have ever asked for and I told him how proud I am for all he has done in his life. I thanked him for being my good friend and for going to all the auctions and flea markets and out to eat.
He held my hand and began struggling with breathing again. I quit talking as I didn’t want to get him upset. Al has never been able to accept that he is a good man, but I had to tell him. I sat with him until he finally drifted off to sleep.
Tomorrow I have foods to make and I have ignored the house so much. The Hospice nurse will be here also and my one daughter-in-law will be stopping by. Christmas Day my son and his family will be here for the noon meal and our Aunt will be paying Al a visit. Thursday my daughter will be arriving sometime in the day and the caregiver will once again return.
I miss Stacy already. She is a big help to me and to Al, but she deserves off her holiday also. So I will be busy, too busy for my taste. Al is the priority, the foods and holiday will work around him. I will do my best to touch base tomorrow night. Hugs to all of you.
26 Hours And Still Awake
Hi my friends. I have now been up for over 26 hours with dozing in between. It is not me only doing…
Hi my friends. I have now been up for over 26 hours with dozing in between. It is not me only doing this, it is Al too. Hospice says it is a restless syndrome right before the dying. I don’t know what it is and I can’t identify it any other way than fidgety.
Yesterday I posted but then I deleted it. It was a post on my feelings at the moment and not the entire scene. I guess I don’t do well when I have no sleep. I am crabby and can be short-tempered. I cry and I feel guilt at not being able to help Al in any way.
He is in God’s hands now and all I can do is make sure he is dry. Comfort is not something I can give him it seems. No matter what position I place him in he is not comfortable. I can sense his fear of dying but no matter what I try to say to make it feel better, it doesn’t work. Once again I think this is between him and God.
I guess when I am weak I become fearful, and this is why I deleted the post. I kept thinking afterwards, what will my friends think if they learn of me being angry, frustrated and sounding whiny.
Al sleeps about twenty minutes out of a couple of hours. He is on very high doses of medications but they aren’t working. Hospice was here for several hours today. The Hospice minister dropped by to see Al. Al had requested my son to come by a few times. I asked my son to please come over and he did.
The Hospice team, the Doctors and the Pharmacist are all working together and by Monday sometime there is to be a new medication that will enable Al’s body to go into a deeper sleep to help him pass into the dying process.
Al had been begging the Hospice nurse to give him a needle or a shot to end his life, but of course it is illegal here and the nurse told him she could not help him out. This only agitated Al more and this in turn caused more agitation from him.
Many times today I have cried out to God, what are you waiting for? He wants to come home, help him. I can’t sense a God here in our house, or even in Al’s bedroom. It doesn’t mean there isn’t a God here, it just means I feel nothing but tiredness and I feel almost numb anymore.
I have seen Al reaching up to the ceiling with his arms trying to leave. Talk about a tear jerker. It bring tears to my eyes instantly as if I am watching in slow motion a movie that is playing out and I have guessed the ending but have yet to see it.
I am not sure what I am running on. I can only imagine what Al is running on. It must be burnt fumes of earlier energy. Al is wetting extremely heavy. Almost every fifteen minutes he has soaked a brief. He is still drinking and eating but not very much. He has some sort of brown colored stuff that is coming from his mouth.
I keep dabbing it clean with toothettes. His mouth is dry but I imagine part of it is the medicine he is on. He sweats and then he freezes. He stares at me with those big blue eyes and when I asked him what do you want to say, he says nothing.
Rhino the cat will come in and jump on my lap and put his paws on my face or give me a kiss. I know without knowing cat language that Rhino feels the emotions running throughout the house.
I am ready to let Al go. I can no longer stand to watch his suffering and I have told Al many times to please go see Mom and Dad. Al has told me several times today that he loves me with all of his heart. When Randy, my son came to see him, he told him goodbye.
This tore at me so bad I broke out crying right there in front of Al. So life here at our house is its own living hell. It includes a lot of love, heartache, anger, tears, sleepiness, restlessness and any other emotions you can think of.
I will try to post once a day for now. Al does not like to be alone. He can be asleep and as soon as I tip toe out of the room he is wide awake. I love all of you, my friends and I think of you often.
Take My Love With You When You Know It Is Time
It is almost one am and I need to get some sleep. But before I can I want to thank you for all of…
It is almost one am and I need to get some sleep. But before I can I want to thank you for all of your support and your great friendship. I couldn’t possibly have done any of this without either one.
It has not been a good day. It seems so many changes happen and I just about can’t keep up with them they come so quickly.
Last night I recognized a certain breathing Al was doing. With prior experience taking care of patients nearing the end, the memories swiftly returned as I watched and listened to him. It didn’t stop there.
This morning when I woke him for his shower, he looked at me like he had no idea who I was or where he was. Two ladies appeared at the front door and between them and Al I sat here at my computer in awe as I was forced to hear the rude comments coming from Al’s mouth.
He was angry and mouthy. He was definitely not himself. After the shower was complete, both ladies look exhausted. I knew in that moment the showers were over. It was bed baths from now on. When they brought the topic up for the next shower day, I wasted no time in agreeing with them. I do not want these nice gals getting hurt over Al’s weakness.
Al went off to Day Program as planned but when he arrived home there was no looking up at me as he usually does. No wave from his hand. There was only nothing. The bus driver kept giving me the look as she lowered him to the snowy ground.
I could tell that she wanted to tell me something but could not because Al was right there. I wished her a good weekend and took Al inside to a nice warm living room. I quickly took his outer wear off and looked at his communication book and saw that there had been issues during the day.
The comments were Al was very weak. Two staff had tried to help him with the bathroom duty but Al’s legs didn’t move. The two could not hold up the dead weight and Al slid down to the floor, so they would not drop him.
With extra help they got him back in his chair. He has a blood mark where he was injured and a report was made on this.
I had surprised Al when I went out to get groceries and stopped at his favorite restaurant and picked up supper. I nuked the food and started to feed Al but he wanted nothing to do with it.
It seemed that he was slipping a way from me. No emotions, no movements. I called Hospice and told about the incident from Day Program. She came over and checked him out.
His blood pressure was high. His heart beat was too high. He was not well. She and I looked at each other and we both knew we could not lift him to put him in bed. She called the fire department and within minutes five fire fighters arrived.
I know this is hard to believe but with one of the guys in charge of removing the wheelchair away once they had Al up, it took all four of the others to put him in bed. When there is dead weight involved, what they weigh in reality seems doubled.
The nurse noticed some changes in his feet. Cold and a little dark. She was so nice. She helped me get Al’s clothing off and get him changed and positioned. Not many nurses do that and I was very appreciative.
When we left his room and we were in the living room she began conversations of what to look for with Al when he is passing. She gave instructions on what to do and who to call once that time was here.
I knew in my heart that Al didn’t have much longer. She told me with the visits Al has had from heaven that I needed to tell Al to take their hand and go.
She then grabbed her things and gave me the biggest hug. I felt like all of you were a part of that hug, it was so big.
After she left I went in and sat with Al. We talked about heaven and I told him the next time he saw mom or dad or grandma to grab their hand and go. I told him he has been a real fighter in this illness. I explained that if things didn’t improve by Monday he would probably not be able to go to Day Program any longer.
I explained that he did a good job all through this and how proud I was of him. I waited and watched him as he tried hard to settle down to sleep. Rhino came in and meowed and I heard Al say ever so softly, ” I will miss you Rhino.” With that Al went to sleep.
I am not scared, and I am not ready, but I know things are going to change again. I am so thankful that I have had the chance to be with Al and that I have Rhino.
Al, I don’t know when your time is going to be, but I love you brother. Take my love with you when you decide it is time to go.
This is the fourth night in a row I am not getting any quality of sleep. Quality, an interesting word, I think.
Quality of life, quality of living, quality of spending time together. Now suddenly this seven letter word can’t seem to release itself from my pointy tongue this morning.
I am not usually awake at 7am but here I am. Sitting here with a half-empty cup of coffee. A smoldering blue line of smoke rising from my ashtray. My pink long-sleeved nightgown with Christmas gifts for its scene. I think this is to remind me that it is truly the Christmas season we are about to enter into.
As I look out through half-slit blinds I see the first ray of daylight peeking through. Another night has come and gone. Al has just gone to sleep and I am sitting here bitchy inside. I know I am tired but I don’t know how to fix it.
Yesterday Al went to the Day Program. I had an appointment I had to attend to and then I scurried to the grocery store; like a squirrel going after nuts to store for the winter. Except I was replenishing our kitchen cupboards and refrigerator.
Grocery shopping has become a chore more than a pleasure. Maybe a lot of you don’t see pushing a noisy, wire, gum stuck on the wheeled cart down the aisles a pleasure, but I always did. It was a chance to look out for people I know, a chat here and there, looking for the bargains.
But anymore it is do I have everything I need for Al. Will he be able to eat this meat or not? Do I have the apple juice, prune juice, the kind of snacks he eats. Which by the way the latest rage in our house is Little Debbie Star Crunch or Kellogg’s Pop Tarts. Do I have his yogurt. I hope I have enough macaroni and cheese since he can eat this pretty easy. Do I have enough pancake batter? Oh that reminds me, do I have enough chocolate chips left at home for the week? We have to add the chips to the batter.
Ever since Al has become worse he extremely enjoys chocolate and sweets. Oh crap, I didn’t check the amount of chocolate ice-cream. I better pick up another box. Can you believe I take a list with me also?
This is how scatter brained I am it seems lately. In between the list I need to be home running the washer, which will be Al’s bedding. I really should be sweeping and dusting his room since he is gone right now.
Have I changed my own sheets this week? Oh forget that, change the sheet on the couch, because this is where I have laid my head this past week. A much shorter walk to Al’s bed then my bedroom.
I feel like my life is out of control. It is spinning but never stopping. I look at that empty couch and dream of my head on that pillow but also realize that the helper will be here in less than an hour and I am still not dressed. I haven’t touched my hair or brushed my teeth.
I did manage to give Rhino fresh food and water. Saving the cleaning of the cat box for when my eyes are more awake. That fat cat is in on my comfy bed, sleeping on my extra pillow. Al has finally drifted off to sleep, and so here I sit, the wicked witch of the west.
Feeling sorry for myself, pouring my tired thoughts out to you. Obviously looking for a pity party. It is funny as I look back at what I wrote. A grown woman, full of love and compassion. Empathy is my middle name and yet I am definitely green-faced and cat claws are showing, just like the photo above.
And all this is from a silly thing called lack of sleep. Do you think I will turn into Dorothy’s worst nightmare and remain this way? Lord I hope not. When the caregiver comes and breakfast and medications are over, I am going to find my pillow and we are going to meet somewhere in the middle. I don’t care if it is daylight or not.
I was able to get up this morning and take a shower at my own pace. I even put some body lotion on afterwards and am dressed. I smell like a lady again. Do you think anyone will notice?
Probably not, but I do. I am able to sit here and write and drink my first cup of coffee. I am loving every moment I have with myself. I look out the window and I see a mixture of sun and a few streaky clouds. I see one tree now baron of leaves, other trees that haven’t begun to shed their summer leaves and I see one pine tree.
I used to hate silence. I used to hate spending time with myself. I thought I was boring. But Al‘s illness and my responsibilities to taking care of his needs has made me appreciate one leisurely shower.
The coffee taste better. Rhino, our cat is napping on my bed. Al is snoring. The Christmas tree is glowing and all is quiet. In my neighborhood I live with Senior Citizens on my side of the road. On the opposite side lives the Saturday social drinkers; so Sunday mornings can be spectacular.
I don’t know how many of you take time to be with yourself. I don’t mean meditating or praying. I mean just stepping back and looking at the precise moment you are in. What are you doing and are you enjoying it? Have you noticed anything about this fine Sunday morning?