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.great-light-wallpaper-544979.jpeg Ah, just look at this picture Terry and sit back and relax.

Another First Day

First day of anything is usually a little chaotic. It is the same in our case too. I got up at 6:45 this morning and started the coffee pot. I swore I was going to have one cup of coffee during this busy bee time or I would go nuts.

I fed Mr. Rhino who…

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Another First Day

First day of anything is usually a little chaotic. It is the same in our case too. I got up at 6:45 this morning and started the coffee pot. I swore I was going to have one cup of coffee during this busy bee time or I would go nuts.

I fed Mr. Rhino who managed to sleep either on top of me or snuggled up beside me all night. Poor baby, he thinks I don’t notice that he is here. I understand, I have been ignoring him some what. Less petting moments, so he is making sure I know he still has needs. Hey Rhino, what about mommy’s needs? Oh alright, you say mommies come last, I get it. Just like with mommy and daddy, we come last.

I cleaned his cat box, then proceeded to get all of Al‘s supplies ready. Shaver, hand towel, wash cloth, baby powder, baby oil, clean clothes, shoes and socks; check, got it. Oh wait, what about the brief and liner silly? Do you want him to go briefless? Check; got it.

Alrighty then, coffee in one hand and turning the TV news on so he can be entertained while sis is cleaning him up. He was awake when I entered his room. I just don’t know how he does it. His head isn’t on the pillow, it is hanging in mid-air. Like a magic trick, look ma, no hands. But, his head will not lie flat without a little help from my hands.

So we started the get-up process. This takes about an hour. We get out to the kitchen and I go back and grab the soiled bed clothing and make a mad dash for the washing machine. Popped them in and listened to the music of washing.

Al wanted Pop Tarts for breakfast, so he made that easy for me. The only thing I had to que him on was bite sizes and waiting until he swallowed each bite. I do declare he would put as much of any food in his mouth and just keep stuffing. He didn’t used to be like that but he is now. He took his medications and then when finished I washed his hands and face and ta-da, he was ready to go with six minutes to spare.

I raced around and got his lunch box ready. I sat him at the front door and asked him if he could be my helper and watch for the bus. He didn’t answer and his head was hanging too low so I know he couldn’t, but maybe it made him feel worthy by my asking, I am hoping.

The bus came and loaded him up and he was off. So was I, off to the same place but different location. I had a meeting with the people who were going to be watching over him through the day times. I had not had the time to eat breakfast myself nor did I get to take my medications.

The meeting lasted two hours and I was famished. The meeting was over at 10:45 and I had to meet the Hospice nurse at 11. I just had to take my medicine. I darted out to my car like a rabbit stealing a carrot. I raced down to the Dairy Queen and grabbed one of those five dollar value meals. Nothing like having a hamburger for breakfast/lunch. Racing back to the company I took my food inside and sank into one of the leather seats in the waiting room.

The receptionist looked at me a little strange, but I explained what was going on and I was just now catching up on my meal between meetings. She sort of snickered but oh well, who cares, I knew what I was doing.

The nurse arrived so I continued eating during our meeting. She met Al for the first time and he was having chest pains at number 7 on our scale. We gave him his pain medication and the nurse determined that he had had a BM earlier and the pushing mechanism had set off those nasty internal tremors. We stood and watched his fingernails turn light gray to dark gray.

Finally the pill kicked in and we both sighed a relief. We went on to continue our business and I did learn that as of right now I am not going to get the help in the mornings as I was promised. That broke my heart because Al is difficult to handle alone.

It seems that to get the help at home and have Medicaid pay for it, even through the waiver, the primary caregiver has to be working outside the home. What the heck? I don’t work so I can care for him. I don’t get it. So I called the Waiver man and he is working on how to rectify it if he can.

The Hospice aides will be here three times a week to give Al his showers, so if worse comes to worse, I will just have to do what I have to do. That gives me three days for his showers but doesn’t help at all with getting him up in the mornings.

I came home finally about 2 and I just wanted to lay down and sleep forever, but I had calls to make. Getting this whole program to put in place is not that easy. I don’t have a permanent case worker yet, so that is being worked on. The case worker will do the phone call crap instead of me once he/she is in place.

I looked at the time and it was 3:30. I had one hour before Al came home. I should be folding the clothes out of the dryer or doing something but I couldn’t. Rhino came up and we both cuddled on the couch and I slept until the phone rang not once but twice.

A friend called and then the Spirit man called. Whoa baby that woke me up, spirit man? What has this world came to? His real name in my book is minister, but his title in today’s world is spiritual man.

Alright I get it, new modern world thing. He wants to come at 4:30 to meet with me and Al. I tell him yes, and was thinking now leave me alone, I am tired. We hung up and I fell instantly asleep until the door bell rang and going to the door it was the spirit man in full beard and dockers. Is this Jesus coming to take me home in dockers? Oh my gosh, just let the man in. I force my eyes open and try to look like he didn’t wake me out of a dead sleep. He takes a seat and starts jabbering then Al is delivered home. The two of them meet, Al cries because they are talking about God and this topic always makes Al cry because he wants to go to heaven so bad.

Letting the man out the door Al doesn’t want any supper. So it is ice-cream mixed with Ensure again. A change of briefs, out of clothes and he is now napping. When he wakes up I will offer him some solid food and hopefully he eats something for me.

The house is quiet except for the Escape music on Satellite. I look at my computer, and think well hello there my friend. I pull out my chair and decide to visit with my friends.

The Boogeyman

Subconscience, what a long word. Not easy to say, and least of all not easy to understand.

Farnkenstein monster

My mind usually is spinning before it is connected to the fact that my eyes are open and I am sitting on the edge of the bed.

I wonder if that part of my brain parties through my sleep mode. Does the real truth come out?

Is what we say in our dreams really matter?

How many times is the truth that needs to be told hidden so deep within, that sometimes therapists can not even hold their breath long enough for the information to surface.

I know for me, the past three to four days, something has been going on inside my head while I am resting. Am I really resting though, or literally taking a break from stress and worries?

For the last few days I have had dreams where I wake up and am crying. I even took a nip at the Take A Nap bottle today, and when I awoke, my eyes were wet from tears.

What is it that is going on? Someone inside of me knows the truth, and yet I am still the last to know.

I dreamed one time I was married but had a ball and chain around my neck. I know that I am lonely for companionship of a nice guy, but I never really ponder on marriage. I know that if I had to remarry my ex, I would run quickly a way dragging that added weight with me.

I dreamed another time that I was divorcing something. It wasn’t human. It was ugly and huge in my mind. I remember crying because it woke me up. Whatever it was, it wouldn’t let me go. It was like a fierce ball of fire and no matter which way I turned it followed me.

I have been doing one thing that I thought I was healed from. Waiting for the boogey man to get me. When I was a very young child, and I was abused, it happened through the night hours.

There was also another time that made me afraid of the dark. I don’t know if this is what I have made me believe or if the reason was real. I can remember when I was brought back by the Welfare Department when I was around three years old I had to be very good and also quiet.

The motto for me in those young days was, children should be seen and not heard.

I can remember being put in the coat closet for a couple of days. Now my memory tells me that my Grandma said I was sick. I had chicken pox or something and darkness made it go a way.

All I know is that I was scared. I can remember it like it was yesterday. Sitting in the dark closet on the carpeted floor. Feeling the material of coat sleeves and scarves touching me. For years and years, I was afraid for it to get dark outside. I always thought the boogy man was coming to get me.

I have reasoned with myself so many hundreds of times. I told myself anything that would get me through the night. I would say things like

You are too ugly, no one would ever want you. You are too heavy, no one would stay at the window and stare at you. As soon as it breaks daylight, I can go to sleep.

I used to sit up with a knife in my hand when I was married and my husband worked thirds. I would stay up all night until I heard the birds sing then I could sleep. Finally I started having my daughter sleep with me. She replaced the knife.

When things got so bad that I thought I was going insane I sought help. This took a long time but I did get better. I am usually not bothered with the Boogy man anymore until recently.

I don’t want him back. In my reality I know that the friction of what happened this past weekend has done more damage to me than I thought. Dreams and Boogy man all come back.

I must be tired, in fact I know I am tired. I find myself taking naps more frequently. I have spent many hours on the phone making calls trying to get an XL size commode here for Al.

Medicare bought one for him last September, so now they won’t get him one for now. He has to have it. There is a weight limit to be able to get the bigger size and Al isn’t at that weight.

I am desperately trying to find this so I won’t have to clean up every time he potties. I am also trying to find a Lift Chair for him. With him only able to stand for a few moments and take about three steps before he is down, I thought a lift chair would be perfect.

Guess what? Another wall to run into. In order for Medicare or Medicaid to pay for one of these, he was to be able to walk with at least a walker.

I wish now that I would have given up on the Title of Help Pay This Big Bill and instead ask you to help me with donations for a lift chair. I don’t know the answers anymore. I just know that I am bumping into walls higher than I can climb.

I think in my eyes this is the beast that represents divorce and tears and the boogy man. Al wants to come home. I want him to come home. I want him to feel loved. He needs to feel loved.

I am tired of crying in my dreams, but can’t shed tears while I am a wake. I am tired of restless nights. I have made progress, and I am very thankful, but yet this shadow hovers over me.

Today I was able to get a hold of a company that will provide Al with his briefs,(adult diapers), bed pads, and gloves for me. His hospital bed and wheelchair have prescriptions now waiting for his return. He was let out of his cage and back into his room. This is all  progress, right? So what am I worrying or stressing about?

If God wants him to have an XL commode and a lift chair, he is going to  have to supply it. This is all I know anymore.


The definition:

Part of Speech: adjective
Definition: innermost in thought
Synonyms: hidden, inmost, inner, intuitive, latent, mental, repressed, subliminal, suppressed, unconscious
Antonyms: conscious, outer



A Busy Week

English: Yard sale on Green Street in .

It has been a busy week. The Ombudsman and I finally made a connection by phone. She was to go to the facility last Friday. She told me to sit tight until she got a hold of me. I have heard nothing as of yet.

I am meeting with the State people this Thursday. Al‘s budget has been set. Now he is going to ask me what I need help with for Al’s care and then he will go to the Day Program Director and meet with her on the same day. The Dept. will tell them what it cost for transportation, Day Program Services, and they will take the budget and make it fit for both of us.

There are also going to be between 30-50 hours that are budgeted too for his care here at home. I have had to choose businesses that will help me to get what Al needs. So it is looking real good at this point.

The State said they want Al home by June 1st. It may not be exactly on that day, but it will be real close.

Al fell the day before yesterday again. The next day he was not feeling well. He refused his meals but today when I went to see him, he felt better, but he was complaining of a lot of pain in his leg.

The facility wants him to go to exercise class they offer, but every time Al goes  he complains for a day or two of great pain. I don’t know if this class hurts him or helps him in the end. I just hate having his doses upped every time we turn around.

He gained one pound last week from the seven pound weight loss he had. I am anxious to see what he does this week. He has big red rashes on his skin where the pain patch is so powerful that it leaves like a burn mark on his skin. Then he scratches it as it tries to heal. It looks nasty but I am not going to worry as of right now it is scabbed over. Every three days they switch his pain patch to a different spot and also the new antidepressant patch he is wearing.

I am also getting ready for a yard sale this Friday. The money is nice but doing the prep work is not fun at all. My living room is a mess right now. I will be glad when the sale is over. Back to tidy tidy for me. I always hated messes. Guess I will never change.

I finally got Al’s scooter moved from his room out to the shed. He says he doesn’t want to ride it anymore. I have to wonder if he is strong enough to even run it, although it is battery operated, it still has some umph to it. He leans so bad I am afraid he will wreck and hurt himself. I am not going to get rid of it for at least now.

You never know, he may come home and perk up from being here. Maybe some things will change and I will see more smiles, or maybe I am just hoping. But either way, they are too expensive to just sell so easily.

Tomorrow I am going to work more on the yard sale prep work, and call the doctor to start getting the list of things started that Medicare and Medicaid will pay. I know that I need a hospital bed. I am so hoping that one of these two programs will pay for an XL commode. I think I can get bed pads, and briefs through RX. If you think of something I haven’t let me know. I want the better part of it here when Al gets here.

My son is going to install a shower grab bar in Al’s bathroom. I have changed the ceiling light in his bathroom also so it is much brighter. I have all  his summer clothes put in his drawers and the winter clothes out. I have some hospital gowns too. He may not want them now, but they may come in handy later on.

I am excited and nervous about him coming home, but in the end, it will be me that spends quality time with him instead of the nursing home. I think with all the hours of help that are being provided, and the fact he will go to Day Program M-F I will be alright.

Like I said, it has been a busy week. Well, I better get back to work because it is almost time for supper. I cooked two chicken breast and shredded it. I boiled some eggs just now. They are cooling, and then I am having steamed broccoli and a chicken salad sandwich for supper tonight. The weather is 80 degrees today. The windows are open. Fresh air is finding its way of clearing stale winter air out. The sun is shining. Al is coming home, and life is good for today.