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…

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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 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.

Robe or Clothes

Hi my friends. I sit here not feeling the best. I am cold and a little dizzy. My blood pressureseem…

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Robe or Clothes

Hi my friends. I sit here not feeling the best. I am cold and a little dizzy. My blood pressure seems to be alright and my sugars are normal and yet I feel like crap. I imagine part of it is the weather and my nose and sinuses do not care for the heat on in the house.

The other part is probably just me being drained, tired and exhausted. I ran yesterday, Thanksgiving on four hours of sleep. I crashed at 9pm and slept until 8am this morning. I felt fine when I got up and then about an hour later started feeling like crap again.

I called the Hospice house last night to check on Al. The nurse said he had not had a good day, but at this time in the evening he was starting to calm down. I learned they had changed his one pain medication to another.

I had thrown such a terrible fit about them trying to drug him up so bad they discontinued that drug and changed it to another. But the issue is bigger than that. You have a patient who is in pain 24/7. His body is constantly contracting and shrinking.

Muscles are hurting from non-use and then you have these terrible medications that can actually make a body worse. Hyper or slowed to the point of barely moving.

For me I find myself having to make decisions for another soul. Although his life is truly in God’s hands I play a big part in it too. The quality of life is the teeter totter. Balancing between comfort and someone you begin to not recognize in order to get that comfort.

This to me is stress at it’s best, which like I said before, is probably playing a big role in why I don’t feel good. Just because Al isn’t here, doesn’t mean my own body is in a stage of miracle healing. The side effects of being a caregiver can take time to heal to a point of what it was before.

I called Hospice again this morning to check on Al. They stated they can not get him up to go to the bathroom because he is too weak. This is what I am talking about with the medications.

Is it the MSA progressing to the point that he can’t stand or is it the side effects of the new drug. I hate it when they express they are giving him a new drug, which in truth is just another name for the same drug.

Same family of medications, but more severe side effects. I researched it to death this morning and it is dangerous. So where does the teeter become less tottering? I don’t know.

The helper is coming over today for a while, while  Al isn’t here. We are going to try to arrange his  room so a wheelchair and things he needs in there are easily obtained. I hope we can figure everything out.

Al throws such a fit and I also realize how much his vintage cars and coca cola mean to him. I also realize that while he is in bed more and more he enjoys looking at his treasures. But then you have the issue of needing more space as he is taken care of more in his bed.

The wheelchair needs to be able to have enough space for when he needs it and the caregivers need space also, so we shall see what we can come up with for the benefit of Al and me.

With Thanksgiving being over I have decided to be lazy today. I didn’t go to any stampede black Friday sales last night or this morning. I am still in my robe. I am expecting a delivery for supplies for Al. I really don’t give a hoot if I answer the door to him dressed this way or not. Who cares? If he wants to take mental note that a caregiver answered the door in a robe, so be it. Let him try being a caregiver.

The sun is shining and I am trying to get my mood and smiles to shine also. It is  hard though, I am just plain tired. Al will probably be home Monday, so I will tend to relax, clean his room, and maybe squeeze some time in Christmas shopping, who knows,,,,maybe I will just stay in my robe until Monday.

 

Happy Thanksgiving

Today is calm. Clouds, a dusting of white snow on the ground. Cold temperatures of 20 degrees. I…

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Happy Thanksgiving

Today is calm. Clouds, a dusting of white snow on the ground. Cold temperatures of 20 degrees. I have had my shower and am sitting here in my warm night-gown and fuzzy slippers. I am waiting for the phone call that will start my day.

The shower girl will be announcing what time she will be here. This fifteen to twenty minutes is almost as important to me in the mornings as talking to God is. Quietness, the sound of Rhino wanting petted and the fans running on the computer.

When that phone rings it will signal me to go get Al up. I will change his brief and assist him in a sitting up position. Then transferring him to his wheelchair and placing him in a good position at his bedside table, I will start his breakfast.

Once he has eaten, I will brush his teeth and shave him. The shower girl will arrive and do her thing, then it is getting Al ready to be bundled up to get on the bus. Already the memories of silence I heard just moments ago will fade into a puff of smoke.

I will then receive a call from the Hospice nurse telling me when she will be arriving at Al’s Day Program. I will armor myself with boots and gloves, warm up my cold car and with grocery list in hand I will once again be placed into the hustle and bustle of people in the grocery stores, all doing the same thing.

It is getting uncomfortable to be around the crowds. I think it is because I spend ninety percent of my time inside our home. After leaving the grocery store I am meeting a lady to pick up an item I purchased.

Driving home, getting the mail, carrying the groceries in and putting them a way, I will look at the clock and take notice of how much free time I have left. I will let out a sigh and grab one last cup of coffee before the glimmer of silence is gone until bedtime. You have to love Mondays. Although weekends are the same to me as most of the week days, I hear no doctors or have any meetings or big routines on the weekends. I kind of like that.

This will be a busy week for anyone celebrating Thanksgiving with families. I want to wish all of you that will be traveling a safe trip, yummy food, good conversation and a happy Thanksgiving.

O Happy Day

Oh happy day, it is Monday. Freedom, I get out of the house. Now don’t think I am a nut case, but being in the house for 48 hours with no fresh air, I feel like a baby chick bursting out of my shell.

Even Al woke up with a smile this morning. It sort of…

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O Happy Day

Oh happy day, it is Monday. Freedom, I get out of the house. Now don’t think I am a nut case, but being in the house for 48 hours with no fresh air, I feel like a baby chick bursting out of my shell.

Even Al woke up with a smile this morning. It sort of rubs me the wrong way because he doesn’t smile for me usually, and I am the one who works so hard to get one smile. I can understand on the other hand though. Hey, he gets a way from me for a while. Although he ask to be in his bed, he breaks apart from it too.

My Christmas tree took a dump on me. The lights have trickled out over the weekend until I have one little place lit, so off to Wal-Mart for new lights.

So as I say Oh happy day!

Take A Deep Breath

Take a deep breath Terry, relax, breathe deep. Smell the stale coffee!!! I got a call from the lady…

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Take A Deep Breath

Take a deep breath Terry, relax, breathe deep. Smell the stale coffee!!! I got a call from the lady today who is supposed to start Monday. She started off by stating she had questions.

Oh no! She isn’t going to take the job. She has changed her mind! Just when I was about to relax and enjoy the extra help.

She had questions. You see when she was here before Al was a whole different personality. He got angered easily. He could have a very smart mouth, and there were many times he wasn’t so pleasant to be around if he wasn’t getting his own way. Kind of like a kid throwing an adult temper tantrum.

But the illness changed him. He grew weak and his voice softened. He turned mushy and cries a lot. She wanted to know if he stayed in his wheelchair much. She was questioning exactly what she would have to do for him if I left and went to a store.

I understood exactly her alarm and I explained to her how Al is today. Pretty much bed-bound. Eats in bed, watches TV a lot, sleeps about 16 hours per day.

All she could say is WOW, he sure has changed. I said, “Yes, an illness has a way of getting a hold of a person. You will be surprised when you see him again.”

I don’t think she is 100% satisfied but she did say she was still coming Monday. She just wanted her questions answered. I added that I would be here at first with her until she felt comfortable. I told her I would never leave and just throw her to the wolves. I heard her breathe a sigh of relief.

So I am going to relax, take a deep breath and realize God sent this person, end of story, well I can’t help  admitting that I will feel better once she rings that door bell.

Today Al was cranky this morning. He is having more breathing issues. A labored breathing when he is active in any way. I used to hear it off and on but it is pretty regular now.

The Hospice nurse came today and I did tell her about the incident with the shower girl. I also voiced my thoughts on my fear of losing her and not having a shower girl at all.

I called the local Hospice here in town. I was quite disappointed to tell you the truth. I am still weighing the pros and cons but I didn’t like that they didn’t offer any short-term respite and that they had no Hospice House like Al has available to him now.

In fact the more she spoke, the more I shied away. She told me that if I felt I needed a respite break that bad, she would have him admitted to a local nursing home. My breathing stopped, my heart raced as I quickly thought back to the six months he was in a nursing home.

There are three nursing homes here in town. One is supposed to be high standard, that is the one Al was in, and we all know that didn’t work out at all. Another one doesn’t accept Medicaid, so that is automatically out. The last one is a place where you place people whose family doesn’t want them, or there is no money what so ever. I think you can vision what kind of care he would get.

In fact, it is a proven fact that a few  disabled and mentally challenged people who enter never come out again. This is the biggest reason I keep Al at home. I love him, he is safe here, and he is in his familiar territory, plus he is never alone.

I will never unless I lose my mind or become so ill I can no longer care for him let him go back to a nursing home even for a respite of five days.

I was a little surprised at the fact that the director made the comment that if I felt I really needed a break.

My gosh, I take care of everything that has to do with Al. This includes meals, cleaning, changing clothes and bed linens. Grocery shopping, doctor appointments,lifting, guiding, aiding, helping, rolling him over, finances, and with his illness it has turned into a less than peaceful night so my sleep is interrupted, but I will march on like the woman I am. Not giving in nor giving up. God will help me do this and if I get too weak like I have been of late, he will send help,which he did.

Now, just sit back relax, wait for the help to arrive and smile. It looks at this  point I will keep him with the Hospice I am at. Ah, just look at this picture Terry and sit back and relax.