You Do What You Have To Do


I am not one who handles change well. I am better than I used to be, but not much. Yesterday I was thrown from the couch with the early news of a text. I was being informed once again that one of the caregivers would not be here.

I try very hard to understand both sides. Al is not as important to everyone as he is to me. I don’t have a husband nor small children and others do. This can be considered an easy job, meaning there is no lifting nor transfers from bed to chairs.

This job is very mentally draining and for me very emotional. The changes occur frequently. Sometimes Al’s MSA will change hour to hour. Staff that works in this house have to be or learn to be flexible or it will definitely become a burdensome task.

Also, I can remember when I was a caregiver for other patients, not family. We go, we do our job and then we go home to  our own private life. I never gave it too much thought how much time is still left in the day for the primary caregivers.

Now that I am that primary caregiver, it is imperative for my mental and physical health that caregivers be here at all times unless bad snow storms hit. I am responsible 16 hours per day and when a caregiver doesn’t show, I am suddenly thrown into a 24 hour day.

I love my brother, but I need a break. This is why I hired two caregivers.  It saddened me yesterday when I was forced to let one of the caregivers go. It just seemed every week there was a day called off.

My friend came here to be with me for emotional support, friendship but I found it disturbing that she was jumping in and doing caregiver work when one did not show up for work. I felt so bad for  having to make this decision, but I have to sometimes put me above even Al.

Also yesterday it saddened me deeply to learn that my friend was going home. It is easy to be selfish and want her near me, but alas, she has her own life to live and I must let her live it.

Now I have one caregiver that splits her responsibilities between her job and here with Al. She is picking up some of the other caregiver’s hours, but I have learned today that I will still carry that sole responsibility of caring for Al each weekend and a couple of days a week.

There are no easy answers. I went for six months without any help and I so appreciate any help I can have for Al and me now. I pray daily that God will take Al home and I will gain the rest that I so desperately need.

I am drained, tired, exhausted, sad, frustrated and yet somehow I get through each day and night. Al will always remain the most important person in this home. I have to do what is best for him even if it means I suffer along the way. He is the one laying in the bed, not me.

The house is quiet. The caregiver is here. I look over at the recliner and I do not see my friend knitting the baby blanket. I don’t hear her sweet voice or see her beautiful smile. I don’t see her eating her popsicle. I miss her so much, but I have learned so much in the past seven years. The most important thing I have learned is life moves on whether we want it to or not.

Life has never nor will be a bowl of cherries. Laughter can not always be made to happen. But I still stride to look for the small things each day to help me carry through. I lean heavily on my friends here at WordPress, through numerous comments.

I lean maybe too much on the MSA groups through Facebook. Maybe I do lean on my caregiver and all of my internet friends, but if I don’t, what will happen to me? I do what I have to do, this is what I have learned through my adult life. God will carry me through, because someone out there in this world needs me.Terry, 2014

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.robe

 

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...

I Am Grouchy


Today is not one of my better days. Although I have been trying to stay upbeat it is getting harder as the day goes by. Al has been home today. He is weepy as most days. He seems a little confused.

He didn’t know which way to turn to get into his bed. He even called me mom. Generally, I make some sort of joke about what he says but today I am more irritated with everything. I think I need a break.

I don’t feel the best. Having some pains here and there. Discouraged because I had to turn the furnace on. I just absolutely hate winter and everything about it here where I live. Dreary, cold, ugly, way too much snow, windy. This is the day today.

I got Al into bed for his nap. I actually had been in his room fifteen minutes and asked him if he needed anything and he said no. Just moments later he calls me back in, letting me know he was ready to lay down.

Routines, schedules, I just want to scream. What is with the schedule of he can only nap at 3pm?

Of course I know what it is but days like this I don’t like it. He used to always take his nap at 3, not a minute before or after. Supper has to be ready at 5. He wants in bed by midnight.

I finally came out here and ran to U-tube where I find solace away from my problems. I went to a man who I like to listen to. Maybe you will enjoy him also.

So many tell me I am amazing, a great sister. See? I can be grouchy too.

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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

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The Gift


As you all know because I have crammed it down your throats yesterday, today is National Multiple System Atrophy. There have been so many comments on my Face Book page that I haven’t been able to blog. Believe me I am not complaining. People have lit hundreds of candles in his name. Some have donated in his name. Others have worn purple as I still am today.

I was going through my comments and found this precious gift for my brother and I wanted to share with all of you. None of you have met my brother, but I believe in my heart you know him very well.

Dianne Cogar I see that man Al use to be
There in his eyes still strong and free

Though his heart yearns for better days
He knows deep down this is no phase

He fights through tears, through aches, and pain
And hides them well as his strength wanes

He knows too well what lies ahead
Though it is certain he has no dread

For in his heart I’m sure he knows
That as time passes his purpose grows

For from his experience, his loss and win
Those in the future will profit in

And in Al’s name there will come a time
When his legacy will be the sign

That those like him will face less dread
For answers will reach them just ahead

And in their hearts will always be
The man who brought the world to see

For Al’s a fighter, a leader, and more
A man with purpose we all adore

Without a doubt his heart stays sure
One day they’ll find the perfect cure

 

Here is the correct and easy route to the M.S.A. page if you want to light a candle for Al today.

http://www.msaawareness.org/

 

purple candles

Dedicated To My Friend Dianne Cogar


This past week I have been reading more of Dianne’s  poetry than ever before. Why, you ask? Because she writes about life. She writes about people. She writes from her heart and soul the same as I.

I have been lucky enough to have chatted with her over the phone and I am glad that I can call her one of my friends. She knows that I care for Al. She has also done this in her own family, been the head caregiver. She along with anyone who has taken care of elderly, disabled, or anything that others would consider out of the normal, know how tedious and    butterflies 2tiring this job can be.

She also realized as you do that I pretty much go it alone. The Hospice number is always at hand for me, and I greatly appreciate this as I am treading some new waters I have not waded in before.

I stress over things that haven’t happened and you can call me one silly worry wart. I do because of caring for my brother and my father. I can’t  help but  wonder what will happen to me. I know I have said this before, but it weighs on my mind. No one wants to lose their memory. No one wants to become ill.

No one wants to end up as  a stranger to their family. No one wants to die alone. Dianne has been writing poetry for years and this past week she has touched base on the caring for parents.

I was rummaging through U Tube waiting to give my brother his medications and bed time snack when I came across this video. It ripped at my heart as I could relate in so many patients I have cared for.

I don’t care how young you are. Some day you are going to forget things. You are going to wrinkle. You are going to get old no matter how much you exercise or  pay to look young. And I can promise you that one day, you will die.

I guess what I am getting at is- take a moment. Look around in your busy life. Do you have grandparents that are lonely? Do you have an aunt or uncle, brother or sister who is disabled? Do you know someone in your corner of life that is all alone.

My saying I have had for 23 years as a caregiver is “ treat everyone like you want to be treated when you become old. Don’t forget the elderly and the disabled.”

Take a look at this video. It is in a foreign language but read the bottom, it is in English. If you have seen it before, watch it again. If you have never seen it, watch it and then take mental notes.

Thank-you Dianne Cogar so much for coming into my life at the time you did. It was meant to happen. You, my friends can find Dianne on Facebook. She writes for Blue Mountains Art Backyard. She has had her poetry published and I am always astounded at what comes out of her mind onto white pages.

Here is the video.

http://youtu.be/N6_583_o54U

Daily Prompt; Viral


http://dailypost.wordpress.com, DP, Daily Prompt

The New York Times is going to feature your blog on its home page, and you’ve been asked to publish a new post — it’ll be the first thing tens of thousands of new readers see. Write it.

Photographers, artists, poets: show us FIRST.

Hi, my name is Terry. I started writing because God told me too. Before I started writing I spent many hours in elderly people‘s homes caring for them. Sometimes staying for days upon end at a time.

During the time I worked outside the home I was also caring for my Father who had Myeloma. http://www.lls.org/diseaseinformation/myeloma/

Somewhere along my journey in life I started questioning life. I wanted to know what my place was here on earth. What was my talent that God hath given to me. I would glance back at where I had been and once I became better at this I could see pretty much where God was leading me.

Today I would call myself a Professional Caregiver without the Nursing license behind it. Working with disabled children and adults, geriatric and Hospice patients I learned a lot. I can handle the care of a G-tube. I can use an aspirator. I can give medications and shots. I can take your temperature under the tongue, under the arm, or even in the you know where.

I can sit with you while you are sad. I can read you your favorite books. I can read Bible stories to you. I can cry with you and hold your hand in mine. I can place a cool cloth on your forehead. I can sit up, lay you down, change your briefs, take you for a ride or a walk. I can be your best friend. You can count on me to not tell any of your deepest secrets or your worst fears.

I will promise you that you will not die alone. I will be right beside you until your last breath happens. I can file your insurance papers. I can call in your refills, or make doctor appointments for you. I can clean and tidy your house, sorry but no window washing from this gal.

I can do your laundry, cook your meals, and fatten you up with home-made sweet treats. Yes, God has been good to me. He blessed me with a  heart full of love and compassion.

I have to admit not everyone sees me this way. It takes a special person to recognize this type of soul. I have been told I can be cold, bitchy, whiny and nagging. But most of the time I do act in that manner it is out of frustration. For having explained how I feel over and over and the one listening still not getting my point. I do tend to become a little edgy by then.

When you are ill, you listen. You crave for a voice, you desire someone to care. This I can offer.

So when you read my blog New York people, you will know that each and every word written is the truth and nothing but the truth. My blog will always be written from my heart and soul and I will always be speaking directly to you. Why, you ask? Because, this is my talent from God and when God makes people, he does it right.

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Daily Prompt; Life After Blogs


http://dailypost.wordpress.com, DP,  Daily Prompt

Your life without a computer: what does it look like?

Photographers, artists, poets: show us WITHOUT.

I wasn’t one of the first ones to get the new gadget called the computer. I went quite a while before testing it out. First I started with the Web TV. I am not sure if that is still around. Then I bought a second-hand computer, which I learned on but it was very slow, due to it coming with its own set of viruses.

For me, I thought  life was more exciting without the computer. I went outside more. I enjoyed nature, and walks and went to friends houses. I went window shopping and second-hand store shopping.

Through a nasty marriage and finally a divorce I bought my very own first computer. I had it built for my preferences. But what I didn’t know was my future and how important of a play my computer would play in it.

At the time when I got my computer I didn’t spend a lot of time becoming best friends with it as I was taking care of my Dad full-time and had a 40 plus hour a week caring for other patients.

When I wasn’t working I was cleaning house or grocery shopping. One day a week you could find me at the local laundry area chatting a way to strangers waiting for the machines to do their thing.

On free moments I tinkered with my computer. After Dad died, I dug more into the computer to comfort my broken heart. I visited chat rooms which I found to be perverted and a big waste of time. I started doing research on my hobby, slavery. I learned about internet games. I had fun.

I still didn’t spend a lot of time on it. I managed to walk several days a week on one of the hand-made walking trails. I loved raking leaves and sitting by the lake. I adored watching kids play on the playground at the beach.IMG_0253IMG_0273

I loved watching kids swim and laughing. It reminded me of my own youthful days.IMG_0270IMG_0231diving boydiving

But the time came when Al got sick. I was bored with playing games online. The chat rooms I had removed and I was down to a little of this and a little of that.

When I prayed for months to feel useful God turned my computer in to a  healing machine for me. Without having to face people face to face I was able to freely express my feelings.face2face I have been on a healing path that has helped me sort out my life. Although my parents are no longer here I have been able to understand a little easier what kind of family I lived in. I understood why Mom was so tired. I understood why Al is the way he is today.

God has helped me and I have been led by God to help others. He had a perfect plan and used my life to help another soul that I have never met.

If I didn’t have my computer I may not be able to reach out so easily to those needing a shoulder to lean on. Maybe I would go back outside and walk the streets professing my love for him.

Maybe I would go to the park and swing allowing my child to rise once again. Walking could be placed back in the picture. I don’t know, but I do know that I am doing what God wants me to do. I have grown through blogging. I have been able to take the stale band-aides off and let Jesus heal the wounds.

When the time comes and my life is no longer being a caregiver, I will look to God once more for the direction of where he wants me to travel. Who knows, maybe he will lead me to your city.

Sisters Aren’t Perfect Either


I don’t know why I have to be a perfectionist. There is no such thing as one, but I have always tried ever since I can think back to around eleven years of age. I think it stemmed in the beginning from always trying to please my parents.

If I cleaned house good enough they would acknowledge me. If I got good grades they would say something. If and if and if. It doesn’t work. It didn’t work in my younger ages, it didn’t work in my  marriage and it doesn’t work with Al.

But yet I keep trying. I still have my house as clean as possible. Don’t get me wrong. I still don’t do outside windows. I only clean walls and closets in the Spring and Fall, so I am not terribly bad, just bad enough.

It took me all morning to get over the incident with Al and the shower. I even had to lay down and take a nap because the whole incident wiped me out of energy. Finally I got it together as good as I do, and I read all the comments and sucked  in my sponge brain what they said.

I guess with Al the real issue is losing him. Not losing him to death, but losing him to the system. Those words from the hospital saying they were going to have to report his falls, even though they knew why he was falling still haunt me.

What if I make a mistake.What if I speak too loudly. Brother-and-Sister What if I accidentally hurt him or let him fall or anything? Abuse is a big deal into day’s world. Everyone has to prove they are innocent. I don’t want to ever have to go through that because deep down inside I know I am the best sister ever to Al. I love him with all my heart.

I need to learn that I am alright. I am doing a good job with him. I need to realize I can never make him truly happy and I can’t do everything he wishes. He is a sick man living or trying to live as if he is not ill.

I worried about what the bath aide thought as she observed the scene, but then I thought to myself, nothing happened. She just made me feel as if I didn’t do things right. Her telling me I should have sat him back down and explained was her thoughts. I didn’t do anything wrong, I just didn’t think of her idea.

After I woke up I went to the store and bought one more safety guard for the bathroom and a bath mat. There is nothing else I can do as far as the bathroom goes. I have done all that I can think of. There are now three bars in that little room, a bath mat, new lighting so we can all see better, a good bath aide and a loving sister. Anything else that is needed is up to God and Al.