I haven’t been on the computer too much in the past week. I was with a friend who was also a patient for surgery. After the surgery, I was helping with daily needs as the surgery was on the arm.
I almost forgot what it was like to help someone in person. I had over twenty years caring for the sick and aging. After caring for Hospice the last five years and then caring for my brother and my father during their terminal illnesses, I have only cared for myself these past few years.
It wears you out! How did I do that for so many hours and years? Maybe I was just younger and of course I didn’t have this neurological illness then. I always had this thought. God gave me the experience to be able to care for my brother and father in their homes instead of nursing homes and then when they both passed, my job was done.
It seems all in perfect timing to me, except the part of now I am the one ill. I wish sometimes that I had the family member to help me, but with my experience, I am able to care for myself for now.
Have you ever had to care for someone? How long was it? What were your duties?
Yesterday when Hospice was here, the nurse and I had a conversation alone out of Al’s bedroom. She told me it was time to get Al’s clothes together for what I wished him to wear at his funeral.
She told me to get around several photos of Al, and the funeral home would put together a video that would be shown to others walking in. This was all hard for me to swallow. I decided to wait until tomorrow and have my girlfriend help me with this.
I was so excited last night when the phone rang and it was my girlfriend letting me know she was returning for another visit with me. I don’t know what I would do without her. She is just the best.
But during the conversation between the nurse and I, she made a comment that made me want to run to the bathroom and vomit. Pictures flew through my mind and they were not pretty at all.
The nurse didn’t smile or laugh. She seemed very serious. I pondered on her words all day. I finally forced myself to walk to the mailbox and check my mail. I had to get out of the house.
Al was sleeping so I took the ten minutes to walk and snap a few photos. I will post those at the end of this post.
Last night Al didn’t go to sleep until about 3am. I was so tired after having the night before being about the same and no caregiver for two days. I tried sleeping in my recliner but my mind kept going back to our conversation earlier.
I couldn’t sleep in my bed so I laid down on the couch. I finally fell asleep only to be woken by nightmares. The nightmares were of our conversation earlier that day. I stumbled through the night with restless sleep and recurring nightmares.
The caregiver came today and by noon I could hardly keep my eyes open. I had to lay down. I excused myself and laid on the couch. I think because the caregiver was here I went to sleep immediately.
Tonight I am trying very hard to forget what that nurse said, but it is hard. I finally decided to blog my thoughts, hoping between your comments to come and lack of sleep I can get by until tomorrow when my friend arrives.
Do you want to know what the nurse told me? She said so matter-of-fact, that when the hearse comes to take Al’s body, they will put it in the back of the car and then go from place to place, and pile these bodies up and together in the back of that car.
All I could see is Al, my baby brother, being crushed and mauled by other deceased bodies. Even thinking about it now makes me want to vomit. Is this the way it really happens?
If not, why did she comment with it. I would give anything to have been deaf when she spoke. Even if for some chance she was trying to get a smile out of me or lighten the death coming, it didn’t sit well with me at all.
This is my brother, the one I have cared for, for six years, fighting this terrible MSA. I don’t want to hear this crap. I am not accustomed to working with death like Hospice is.
There, I got it out, now I hope it helps me to sleep tonight.
2013 for me. I don’t remember a whole lot. Life seems quite a blur. Al was in the nursing home from January until June. I remember plowing through snow and cold to go see him. I never wanted him to think I didn’t care.
Groceries were not bought much. The bills remained the same most of the year. The TV shows got sillier. None of them really grabbed my attention except American Idol. Somehow looking forward to two nights a week to this show made the winter months go by faster.
June came and Al came home and then life was still not that bad. Life is never as bad as we think it is in the moment we are living it. When we move on down the road and are faced with different challenges, we sometimes look back and think, I wish I could go back to that time.
For a while I was still able to get Al in the car. We went to some antique shops. We went out to eat. I was even able to take him to one more big car show. We went places and Al was placed in an adult program where he could socialize with others. Life seemed pretty good.
Then it was like a blink in an eye life began to change for the worse. Al’s MSA (Multiple System Atrophy) seemed to really kick in. No longer was I able to get him in the car alone, and with no help we had to give up the outings. Life became a little more quiet for him and me.
In no time at all Hospice was involved. Al went from being able to shave himself to me shaving him. He no longer could brush his teeth, I did it for him. He went from finger foods to some help with eating to now; which I feed him all of his food and drinks.
He went from a being able to stand with assistance in his wheelchair to his legs no longer holding him up. Today, he is bed bound. He gets all of his baths in bed. Only a month ago he was still able with lots of help to get a shower.
Now he stares at the TV when his vision will focus. His eyes water, his fingers and hands are locked in a prayer position. His legs are curled in a fetal position, not bad, but getting there.
Instead of him and I decorating for Halloween and Christmas, I did it alone. Al was in the hospital during Thanksgiving and he slept through Christmas. Family came but Al remained in bed.
I have learned to lean on God more and more through this illness of Al’s. I have been angry at God, screamed at him, asked for forgiveness for not being as faithful as I could. I have learned to lean on others for help, such as Hospice, homemakers and ministers.
I have learned who my true friends are and who I can count on when in need. I have learned that I have a huge support system with many people on the internet. I have been shown how many care about Al by all the cards and gifts that have been sent.
I have been taught that to gain strength, all I have to do is pray about it. I have learned how to cook for one and puree for Al. My laundry has doubled, cleaning is still going strong. I am tired and now try to nap when I can. I have learned that the house will always be waiting here for me. The dirt is going anywhere.
I am glad that this year is ending tonight. I would not really want to relive it again. I am hopeful that things will be brighter in 2014. I pray that the Obama Healthcare works itself out.
I hope more lean on their own strength and realize they have more to offer this world than they think. I hope Al finds peace and is reunited with our parents. I pray that I will be able to move on and remember Al with smiles. I hope jobs pick-up and crime is less. Schools offer the basics and we have less drop-outs than ever.
My family will expand by two this new year. I wish for my own family good health and common sense, so that they can survive yet another year. Life isn’t easy, it won’t be from this day on. But with careful consideration and a loving Mom standing behind them, they too will find what they seek.
I hope that each of you stay safe tonight. If you are going to drink, please don’t drive. Beware of your surroundings. Don’t be too proud to take a taxi home if you need to. Tell you children you love them. Hug your parents. Stay positive. We are in this together no matter how many miles separate us. It is up to you and me my friends, to make or break this world.
So to each one of you, Happy New Year, 2014.
P.S. Don’t forget to change your calendars and write 2014 on your checks tomorrow.
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 askingfor forgiveness, I don’t know why. He was naming…
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.
Up until last night I was able to find the little things in life that bring me joy. But I have almost given up as the truth is inside this house, there is no joy.
Moaning, screams of pain, rambling on where no words can be understood. Doctors saying nothing else can be done are just more than I can handle any longer.
Al is so angry at God. This is all a new side I have never seen. He says God is ignoring him and for the first time I have to question whether there truly is a God.
With Al being mentally challenged and completely bed bound there are no lessons for him to be learning anymore. Al can not see beyond the pain any longer. I can’t accept the answers that God may be using his illness to teach me something.
In fact that just irritates the crap out of me. I want to scream out loud, Don’t even use my brother to teach me a lesson. For then the guilt I carry within seeing him suffer is way beyond the stability that I try to carry.
If God has a lesson to teach me or if God thinks that by letting Al continue to suffer it will back fire, because all I can feel is anger within at seeing him suffer.
The moments that Al is not asleep is pure hell here. His body is contracted, his body is burning up. His vision is total blur. His body doesn’t tolerate the high doses of medications he is on. There is no balance. If you give him higher dose he abuses himself from the opposite effect the medicine should have.
The doctors are refusing to give him anything else. They don’t know the answers either. And if they don’t know the answers after years of schooling how can anyone expect me to know them.
When Al is awake I can hear Al screaming out, ” Please, please help me. Somebody help me. God why aren’t you taking me home?” These are words that are repeated so many times I can not begin to count them.
I can bring no comfort, no joy to his life. I have begun to feel like Al and I are actually living in hell and if there is a heaven, then surely this will be his reward when he passes. I continue to beg God,” If you truly exist than take him home now. There is no more perfect moment than now.” But, nothing happens. Al is still here and suffers a little more each day.
My body is drained. Doing housework has become a chore. Christmas coming makes me want to vomit. The joy of listening to Christmas music and baking sugar cookies makes me ill.
If Satan has tried every trick he has then he is winning over Al and it is trickling into me also. If there truly is a God and a Satan, which one is winning?
Who I am 