50 Years Doesn’t Change Too Much


Holding Al’s hand and listening to him breathe I find myself racing back to my past. I am standing at the end of the lane. The small dead-end lane leading to no where that the world recognizes; but to all who lived in the tiny street, this was home.

I pull myself in two pieces, a child and a woman. I see Al, my little brother with his big blue eyes and wide innocent smile. He is wearing his hat with the ball on top and the flap ear pieces that cover when the winds blow.

He wants to stop at the candy store. A tiny white  house that was converted into a public grocery store. Oh this was no ordinary business. This was a mom and pop store. Filled with those emergency food items for moms. Milk, eggs and bread. For dads there were car accessories, batteries and fishing lures.

For us kids it was a place better than heaven. Glass cases filled with shelves of candies. Fingerprints remained from other little fingers of kids pointing to this candy and that. The owner sharing freebies of new candies that came in. Wanting our honest opinions he would say. What did we really think of it?

Al tugs at my jacket and points towards the door with the big silver handle. I can’t resist. I take his hand and we walk in to the smells of friendship, hugs and laughter. Al puts his fingers on the glass placing his individual mark that he was here also to pick his favorite pieces.

I had a quarter in my pocket. I pulled it out and Al looked at the shining coin and we both grinned at each other as we knew we were leaving the store with pockets filled with special treats.

All the way down the lane Al licked his sucker and I made my pieces of chocolate melt in my mouth until I could no longer feel it. About half-way home I let go of my brother’s hand and I skipped and jumped all the way to the front door.

I would look back and see Al looking at me, frozen in spot, afraid he would be forced to walk the rest of the way home alone. I hurried and threw open the door and tossed my books on the couch and took off running for Al and grabbing his hand we walked home hand in hand, me his big sister and protector, he the scared little boy of the big world..

So many memories, so many times the two of us did this together. Now as I stand here looking down at my grown brother’s face I weep into my heart. I see the big blue-eyed child now laying here afraid once again.

Afraid to let go of my hand. Afraid he will be left behind. Afraid to walk ahead without me. My legs feel weak and my heart sobs as I see where life has not really changed that much through these past 50 years.

Al and I still need each other. He still seeks me out for comfort and I reach out to him today as if once again I am caring for that little boy all over again. God has decided that we can’t get too much closer as brother and sister.

He has discovered a new job for me and Al. He wants Al to help him with some project way above what  my own imagination can dream.

As I look into my brother’s face and I see the pain and sweat from this terrible disease my heart finally breaks in two slices. I look down at his puffy and swollen hands and remember how once I had grabbed hold and walked him into that little store. Now just touching his hand makes him flinch in pain.

His legs that once rode swiftly by me on his new bicycle now lay frozen in time. His feet that once walked side by side with me now lay twisted. No longer the shape of what we know of as feet.

I can no longer understand Al’s words but I can still read his eyes and he is letting me know he is afraid. I reach out to him and tell him I love him. I assure him I love him and I will not allow him to walk this journey alone, just as I didn’t let him walk that little lane from the candy store home alone.Al and me Christmas 2013

An MSA Caregiver on a Yo-Yo


How does a yo-yo go? Up and down, up and down, nice and steady, slow then quick.yo yo

This is how I feel. Slow and sleepy. Sometimes full of energy. Days of quick thinking, others too tired for one thought.

I wonder if this is how other caregivers feel? I wish in some ways they did, then I wouldn’t feel so stupid. And other ways I hope they don’t because this is no fun.

It seems anymore Al’s body is totally frozen. Me or the caregiver do everything we can to keep him comfortable. He has some good days which allow some laughter in the house. But mainly there are bad days, scary moments, when we hold our breath, wondering if this will be Al’s last day.

You know? I hate feeling that way. Who in the world keeps track of breathing, pain, and lack of movement, coughing, swallowing? It isn’t even normal. To a stranger it may seem like this gal is a human freak.

Today, Al was in one of his needy moods. He wanted everything and nothing. He was never satisfied. His biggest complaint was he wanted out of bed. I have heard this many times. I know that last winter when I was sick for 30 days, I spent most of it in bed.

I know how much worse I felt not being able to feel free enough to move around. I kept pondering on that as I kept hearing Al pleading to get up. So while the caregiver was here today I decided to do an experiment.

It wasn’t so much for me. I already knew the answers. It was more for Al. I wanted him to see for himself that he could not get up. I guess it was a test that I hoped Al passed mentally.

So the caregiver and I grabbed a hold of him from all sides and we set him on the side of the bed. The first thing I noticed is his legs. I hate to be so graphic but in order for you to understand how they reacted I have to speak it.

His legs reminded me of a fish just out of water. They flopped around with no control at all. Soon they quieted down and just hung there. I then asked him how he felt but he didn’t answer.

He wanted to stand. Before I answered that I asked him to hold his head up so he could see what he was doing, but he failed. He raised his head about half an inch but it wouldn’t budge above that.

I asked him to raise his legs to see if he had any control. One leg went up a couple of inches and the other didn’t rise. With the head being dropped so long I was afraid he would cut off his own breathing, so we placed him back in bed.

He still told me he wanted to try to stand. So I guess my test failed and he repeated his request for getting up. Now this is emotionally draining to me. I couldn’t please him and I couldn’t do as he wanted.

We are now using the fingers for yes and no answers. One finger for yes, two for no.  I can no longer hear or understand what he is saying. When I lean in close to him I can hear his voice, but still can’t make out the words.

Now he is laying there with no facial expressions. He ate two bites of supper. His hands are so swollen and puffy. I asked the nurse why this has been happening the past few days and she stated circulation, or lack of.

I hear Al rattling but we can’t use the Aspiration machine as the mucus is too far down in his throat, and yet his lungs don’t sound bad at all. He is not swallowing his own drool, and I think it is mixing with the mucus, making him cough so much.

So this is one of those bad days. I get so tired of reading my print back and seeing what a pathetic creature I have turned into. I have considered not writing anymore until this is over, but I don’t think I would survive as well as I have without your comments.

Let’s just face facts. I am not as strong as a Christian should be. I get too tired and too emotionally drained. I try, I really try to be positive, but it is darn hard, let me tell you. I keep finding myself begging God to release Al from his pain. Thousands of prayers are being said for him daily and yet he lingers.

If only I could make these last days worth living, but alas, I can not. All I can do is hold his hand, rub his arm, reposition him, keep him dry and offer him food. The rest is up to him and God.

I carry guilt over not doing better for him. Sorrow from watching him become lifeless, and anger at why he is being allowed to continue on with no purpose. I am sorry, today is one of those bad days. I hope for a better day tomorrow, but I need to be realistic.

Al has seen our parents and Jesus. He truly is the lucky one. He is my brother who has fought this battle with all his might. His legs may have flopped like a fish out of control, but his soul is beautiful like the fish of the sea.

fish

Merry Christmas From Me To You


I am sneaking in here on the computer for a few minutes to touch base with you. Al has not changed at all. He is constantly talking but most of the time I can’t understand him. His latest words are 10,9,8,7,6,5,4,3,2,1,dead.

Imagine listening to that all the time. He has asked to be taken to Indianapolis. Of course he is sort of out of it. He has said that his taxes are behind, and they are not. He is so scared of the dark, that he request to have his light left on all night.

He says if he sleeps he will die, so he does everything in his power not to sleep. I was up most of the night last night. It is hard to even sleep through the day because when you do not respond to him he starts yelling.

I don’t want to be this way but the thought of Christmas doesn’t bring a smile to my face. I just want it over. I am looking forward to seeing my kids but that’s it. I want to tear the tree apart. Shove it in a box along with all of the happy, pretty decorations and just call this year a mess and hope for a better year next year.

But to all of you, my wonderful friends, I want to wish you each a Merry Christmas. May your day be filled with joy and love and peace.

Hugs,

Terry

dancing snowmensnowflakestwinkling treenativity-scene1

I Wanted to Say, Don’t Even go There


Al was admitted to the local hospital this morning. I was told that since most medications they use have the reverse reaction for Al, they wanted to admit him so he had a bigger team to work with on getting the right combination of medications.

I just called up there to check on him. The nurse says he is very anxious. She was getting ready to go in and give him something. The hospice nurse is trying to talk me into having Al admitted to a nursing home after his stay at the hospital. I refused. I told her I had done that before and it was not a success because of the large lack of understanding and recognizing MSA.

She then tried to tell me it must be too much for me since I was saying I was too tired. That maybe a nursing home would benefit him. I got very offended. Of course I am tired. For two days he has not slept, so neither have I.

Getting the right combination of medications makes it easier for him to relax enough to sleep and then I get some sleep. Would I like to have more sleep? Yes, who wouldn’t? But I can go on fewer hours per day but I can’t go on two days with none.

I have an excellent helper who happened to have today off. I had asked Hospice for a volunteer to come sit with Al so I could sleep. I was told that volunteers can not change him or give him medicine, so I passed on that suggestion. I would have to stay a wake.

To me this all boils down to Al is contracting causing more pain. When the pain is out of control he is going to be more restless and less sleep. But I look at it as a temporary thing that can be fixed.

So no, I am not placing him. I am a good sister and a good caregiver. With my helper I will keep him at home until he passes. The nurse told me Sunday she thought he was passing. She thought he was having restless syndrome which is right before the death.

The nurse today told me she sees no signs of Al passing. That he was just upset because he was hungry. She said he may have a few months to go. I wish they would stop. Just stop guessing. My  mind has no other route but to follow what the nurses say. To hear that he was passing automatically set my mind to thinking, oh my gosh, our time is so limited.

Then you hear he may have a few months. Oh good, he will be here for Christmas.

I want my brother with me for as long as possible. But if he is constantly going to be in  pain, then of course I would rather have God take him home. Al was holding his arms up to the ceiling last night trying to grab someone’s arms in heaven. There is a big part of Al that wants to die, but I think this stems from the huge discomfort he is in. The other part of him is scared to die. But the other part of him is begging anyone who will listen to give him a shot so he can die.

The whole thing is very upsetting to watch him go through. But one thing I know for sure is I am a good caregiver to him, and I won’t change my mind about it.caregiver

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

What I Did For Love


What I Did For Love

I never knew how

My life was being played

I only knew my heart tugged

At the thought of others

Needing a kind word

A hand on theirs

I followed my heart

And let the world

Go about its business

I will stand here

In your sight

Giving you all

I have in my

Own heart and soul

Written by,

Terry Shepherd

Oct.12, 2013

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