Those Three Little Words


Last night was like any other night with Al. He slept a couple of hours and then he was up. I think last night I was up four times with him. Yes, I am tired today. I am looking forward to bedtime again.

With his body not listening to him he may want to be turned, or wet, or a drink of water. I just never know what it will be. Each time I woke up from just getting back to sleep my body rose a little slower.

On the third time Al was a little chatty. Most of the time I can’t understand him, but this time was different. His voice was louder and his words were clear.

I was repositioning him and when I finished I was pulling the covers back up and over him when he said those three little words I have never heard my brother say to me.

He said I love you.

In fact, he said, ” I’m sorry sis I am such a pain in the ass, but I love you.”

Wow, I came back with, ” What did you say?” He repeated it again and I just smiled at him and told him that was the best Christmas present I could have ever asked for. I beamed from ear to ear.

He went back to sleep. I sort of bounced and slid on cloud nine back to my bed. It took a few minutes for me to go back to sleep because I was savoring those words and burning them in my memory.

What a great moment God gave me. I know God has always known that it bothered me that Al never even said he liked me, let alone he loved me. So although I am dead tired, my heart is wide awake.I-Love-You-Wallpapers-5

 

A Breath of Fresh Air


peaceA breath of fresh air. This is what I feel like I have had these past days Al and I have had a helper.

She is wonderful. So helpful, loving and patient. She does everything for Al. I tell you I think she is spoiling him. At any time she hears him, she is right there.

I can understand why the other girl didn’t work out. There was a better choice. A perfect fit. I am getting rested. My hands are beginning to heal. I have actually felt a little lazy because I am not running back and forth doing this and that at the same time. I even laid down and rested this afternoon.

Yes, I know I am not doing as much but I still get tired. I am getting older and I am still tired from all these years of care giving alone, so I may need to rest in the afternoons for a while. LOL

I just wanted to let you know that so far this girl is amazing. I could ask for no one better.

Venting


A blog is a place to ask for support, tell wonderful news and share photographs. It is also a firm ground to vent, and today this is what I am going to do for my first post.

 

The house is very quiet right now but my head is doing its fair share of stirring up a small funnel cloud. Al did go to Day Program today. He started waking up at 4am wanting to get up. Each time I had to tell him it is not time.

 

He watched TV and I laid in bed under the warm covers listening to the baby monitor and trying to close just one eye. I was still tired. At 9am, the shower gal had still not called. I went in to check on Al and he was crying.

 

Fear of no shower and evidently stressing over not getting to go to D.P. was bothering him. I used the phone and called the office. A message was waiting for me. It seems that although the shower gal called, our phone never rang. She was on her way though.

 

I explained to Al that she was coming but by then he was too much into the stress part and he wasn’t truly listening to me. It seems that this shower gal is coming later and later. She gives Al a very quick shower and he is still damp when he gets on the bus.

 

We all know what this can do to a healthy person, let alone an ill patient, especially as it gets colder outside. She finally arrived and was surprised that Al was getting a shower instead of a bed bath.

 

I explained to her that she should just always assume he will get a shower and when she calls to let us know she is on her way, I can tell her then if he is not going to D.P. She was cool with that.

 

She took Al to the bathroom. Now in the bathroom there is everything ready for her. I have already shaved Al and brushed his teeth. Towels, wash cloths, and his gait belt is all waiting and ready.

 

I came out to my computer and turned it on. I don’t remember what I was thinking I wanted to tell her but I popped my head in the bathroom to say something and my mouth dropped immediately.

 

Al was taking his three steps, and actually doing rather well considering the past four days, but, she was not holding on to him at all. I immediately with probably a stressed voice told her to hang on to him.

 

She said ok. I told her, ” I don’t ever want you to have Al in any standing position without hanging on to him. He could fall so quickly but if you are holding on to him at least you can let him slide down your leg and he would have less than a hard fall.” I had always learned this in my own 23 years of experience and training.

 

She just looked at me and said, ” I hear what you are saying, but he is a big guy. I will never hold on to him so tight that if he falls he will hurt me.”

 

I think I was speechless and then the sister part of me kicked in and I asked, ” Do you know anything about M.S.A.”? She rattled off the long name for it and explained she doesn’t get involved with the diagnosis, she just gives showers.

 

I took a deep breath so I could speak in a nice manner and I explained about the wires in his brain not working. I told her that although he is standing alone at this moment, the very next second he can buckle and go down. I also told her that I never wanted to see her not hanging on to him again and to use the gait belt for better control.

 

She came back with she wasn’t hurting her back over him. I left the bathroom fuming and confused. Under normal conditions I would have reported her butt to the office, but on the other hand, the staff seems to have a hard time getting employees to come up this far, so I feel trapped in some ways.

 

I want Al to have his shower, and yet I didn’t like her comment. I didn’t like that she wasn’t trained on M.S.A. and knew nothing about it. Maybe I am just too protective but Al has fallen even in my care and the bathroom is tiled, not carpet. Well, crap, I just don’t want him to fall period, and for her to say she was more concerned about her than him, just made me swallow wrong.

 

I am going to the grocery store and stocking up because now I never know if he will go to D.P. the next normal scheduled time or not. I want to enjoy my time out today. I haven’t left the house since last Thursday, so I had to write about my thoughts so I can at least enjoy the trip to the grocery store. Now that sounded pretty bad didn’t it. Terry is going to get all excited about grocery shopping. LOL

English: A funnel cloud just east of Salina, K...

The Looking Glass of M.S.A.


 

My Heart Will Go On

For years I have been

Building memories

Of your face as you

Walk through bumpy paths

Of pain, sorrow, and laughter

For years I have stood by your side

Wiped a tear, brushed your hair

Our hearts shared the pain

Of what this terrible disease has done

We watched it take a way your step

Stripped you of your pride

Made you beg for more pain medicine

I have heard you cry at nights

Begging God to take you home

I have wept in my own pool

Al, I will always remember

The man you were

The man you are today

And when these chapters are closed

Know that you are alive in my memories

And that my heart will always go on

Helping to fight until the battle is o’er

And M.S.A. fades

Quietly into memories.

Written by,

Terry Shepherd

10/29/2013

oct 13 13living_soulflowerspurple candles

 

 

A Hidden Road, Being A Caregiver


indiana sayingDo we really know our hearts? Do you or I have an inkling of who we are and how detailed we are made? We are magnificent creatures.

Each of us, having been designed with some hidden talent, just waiting to show the world. I was one of those for years that didn’t know I had a talent. I was brought up to never praise myself in front of others; to do this would be considered bragging.

I was not aware that some talents do not involve actors on TV or singers or playing the piano. It took Word Press for me to finally get it through my head that my hidden talent was caring.

Sounds pretty dull doesn’t it? It doesn’t get bring me stardom, so I will never be rich from it. No one notices outside of those who know who I am. But caring for others replaces the “Me” thought and places it on he or she.

I used to think over twenty years ago that being a caregiver was a piece of cake. I wasn’t in a factory. I wasn’t outdoors in the freezing weather climbing poles. I was inside a warm house, sharing meals and conversation with strangers.

Strangers is such a short-lived phrase. It doesn’t take long at all when you sit and listen to the patient talk that you are drawn into their earlier life. You learn to feel their dreams, and cry with their regrets of growing old and dying.

Yet not everyone can be a caregiver. It is one of those jobs that you best not take it if you are doing it only for the money. Care givers work from the heart for the most part. The physical load I carry is much less than the broken heart watching someone you love or respect or maybe both get worse and die.

Once I discovered the hidden path that makes up me, Terry, I was more content. I was never ashamed again to speak up and admit I am a caregiver, not “just” a caregiver. It is a proud position and I thank God that he chose me to do this type of work for him. When he made me, he put all the right ingredients and he knew I would not fail him.

I have taken care of strangers and I have taken care of family. Of course family is the most difficult by far. More love and emotions, strings attached from years gone by are naturally attached.

Now I deal with Multiple System Atrophy. There are days I cry. There are times I wish it was over. There are moments where I am beat and just want to sleep, but I always go back to the patient, who for me now is my brother, and I look at how brave, a real warrior, he is.

For I have only sat on the side lines and looked through the window and tried my best to understand how he feels. How can I possibly do that? I don’t have this terrible disease. He is the great and mighty fighter. He has fought greater wars than I have my entire life.

Each day when I hear his breathing as he struggles to get in that wheelchair  one more time I feel his will to live. Each day as I see him with fork or spoon in mid-air, and realize that inside he is telling his hand to continue to move towards the mouth, I weep.

The brain is not affected with M.S.A. Al remembers very well that he didn’t used to wet his pants. He remembers driving and working. He remembers having time to himself doing the things he enjoys.

Every second he is awake he is never alone. How humiliating it must be to have your own sister bathing you, changing you, feeding you, but he never says a word. I will ask him if he is enjoying his bath and he will say yes but then begin to cry.

M.S.A. sucks and any of us that are affiliated with it know this. But for my brother, he is a warrior, and for me, I have discovered that hidden road, that secret that was kept silent for so long; until I started to blog

purple candlesAl on SundayM.S.A. logomsa logobook4caregiver