Open Hearts


On my Face Book page I am friends with a gentleman on a poetry page. I have been following him and his thoughts for some time. He was married for over 50 years and lost his beloved wife to Alzheimer’s Disease.

I got permission from Stanton to share his poem with all of you.

We all have lost someone in our lives and if you have not experienced this, you are so lucky. My heart could relate to so many things he was writing about as far as Al goes. Here it is. I hope you enjoy or feel the open heart.

angel-looking-down-from-heaven-534AnimatedAngel

 

One Lonely House and One Lonely Man

Come walk around this lonely house with me…

I have nothing here to sell you.

Just some things that I would tell you…

Of a lonely house that June once made a home.

Before the day…that Alzheimer’s took June away.

A Wednesday  in March was the day…

that June went away.

Over there sits our old chairs.

Where June would often sit with me…

And softly say: “I love you Stan!

June is now gone from our home forever …

And this lonely house will never again be a home…

Without June and the Love that we once knew…

Just one lonely house with one lonely man…

and the long lonely nights.

Straight ahead…There’s our bed.

Where we lay, loved and talked together.

See June’s picture on the table…

Doesn’t June look like she’d be able…

to touch me and say…good morning Stan!

In those days when June made this house a home…

Now…Just one lonely house and one lonely man…

and the long lonely nights.

Come walk around this house with me…

one lonely house with one lonely man…

There’s June’s rings and all her things…

June’s clothes are all still in the closets.

The refrigerator door with all of …

…June’s notes, photos , and knacks…

Just as June left them on that day…

that June went away…

That Day my world was torn apart.

that lonely day that broke my heart…

a Wednesday in March was the day.

That Alzheimer’s took June away.

Come walk around this house with me…

I have nothing here to sell you…

Just some things that I would tell you!

Of one lonely house and one lonely man…

and the long lonely nights.

June and Stan 15 March 2005

I Will Remember You


I took a nap after I blogged today

Now I am better but numb in some ways

I see a weakness inside of me

I need to fix so I am not weak in the knees

It bothers me when I see the anger set in

Where are the smiles that would turn to grins

Does Parkinson’s cause this big of deal

Spinning the personality wheel

Mumbling and cussing is not really his style

Maybe this anger will stay only a while

I hope the new increase in meds

Will cause sleepiness and put him in his bed

I thought the only thing I would ever see

Is maybe Al not walking like he used to be

But it seems to me this disease is really bad

Wanting to steal all that Al always had

I guess it is possible that he may not know

Or remember me or his coca cola show

I don’t wish this illness on anyone

The patient or daughter or even the son

I wish that I could blink my eyes and say

On the count of three you will be gone this day.alvin at fireworks

Visiting Al Today


LTjg Ann Bernatitus, (NC), USN. Albert Murray,...

I went to see Al today and I did not get to stay very long. When I walked in to the room his face was a frozen mask. I see this much more often than I used to. He still has his moments of alertness but they are beginning to grow thin.

I saw a boo-boo on his forehead and asked him what happened, as I saw blood seeping through. He stated that he had run into the bathroom door last night through the night. I said wow, that must have hurt, and he nodded his head yes.

It is getting difficult to see what kind of mood he is in with his face in a blank stare, but he did tell me he was sorry that I had come out, because he did not feel well, and he wanted to sleep so bad. I saw his eyes nodding more and more and so I let him go to sleep.

On my way out the nurse said that he is becoming more confused and I agreed with that I had seen it also. He is using the wheel chair more and more, and I know that he feels like everyone is laughing at him. I told him I understood, but it was alright to use it. It is better to ride the wheel chair instead of falling. The nurses and aides are having to push him up by the arms to keep him standing. His poor legs are just getting tired.

It looks odd to see a six-foot man not be able to hold those legs up, but we can not see what is going on inside of the muscles and nerves. I so wish I could just stop it all for him. He is napping more and more, but yet at times you can see him joke around with the nurses and smiling. His words are soft-spoken now and the words all become together, making it hard to understand what he is saying. He is stuttering quite a bit now.

The nurse just called me and said Al is really confused tonight. He can’t remember her name and he asked for pain pills, and she said she would go get him some. She told me when she went in his room to give them to him he was sitting stark naked. She asked what are you doing, and he replied waiting for my pills. She said naked? He said, am I naked?

My poor brother. My heart breaks at what this nasty old mean Parkinson’s Disease is doing to him. My friend tells me he is going to get so much worse, and I believe her, because she has so much more experience with the disease than I do, but I am fighting it. I don’t want to see it. I don’t want it to get worse. I want my baby brother back. What if he forgets who I am………

 

I Am Saddened By the News


Bifocals

Today Al had an appointment with an eye doctor. Less than a month ago, I had taken him for an eye exam, and he had an increase added to his bifocals. About two weeks ago, he started complaining of blurred and double vision. We made a new appointment with a doctor for a second opinion.

I picked up Al and took him to his appointment.  He had difficulty getting out of the car. I am noticing small changes in his movements, and had been told that a large vein was now a culprit for him, as the muscle around it is being squeezed from the Parkinson’s Disease.

After the doctor examined him very carefully, he gave us the news. The P.D. is working very hard on Al’s muscles behind the eyes. The muscles are becoming weak and slower. Al can not move his eyes as fast as the brain is telling them to move, therefore, leading in to a stage of not being able to focus. The other thing the doctor said is that Al’s cataracts are now significantly showing. The doctor became silent, and then excused himself from the room for a few minutes.

When he returned, he said he had consulted with our own eye doctor, and the two said that Al could not have them removed. Al could not lie still enough for this delicate but easy situation, nor could he be put to sleep to have this done. It seems that Al has nothing to work with to fight this, and eventually he will not be able to see anything. I pray desperately for God to take him home before this happens.

Daily Prompt, The Daily Post At WordPress


Illustration of the Parkinson disease by Sir W...

Daily Prompt

by michelle w. on October 25, 2012

Take a complicated subject you know more about than most people, and explain it to a friend who knows nothing about it at all.

I don’t know much more than anyone else in the world, but I may know a little more about Parkinson’s Disease and from working in the hospice world and caring for end of life patients, I feel like I may be more aware of what happens to ill patients.

Parkinson’s Disease is an illness that affects the brain. It comes completely geared to appear in five stages. The first stages through fourth, are sometimes easiest to deal with. The patient may be able to still work, and lead a productive life, with some noticeable tremors, and some gait issues.

As each phase comes to life, the ability to stand straight becomes harder as the body stiffens. The brain does not let body parts know what to do next,  the legs stiffen and the feet can be found to shuffle along,and so falls can become a part of every day life. Eating may become difficult due to the tremors, which can be in the hands, legs, head, or sometimes the complete body will tremor.

This in turn takes its toll on the body and makes walking harder. There are medications that PD patients can take. They can not cure PD, but they can slow it down, but sometimes the medications themselves, can make it worse in the end result.

In the fifth stage of PD, walking becomes to the point of having to have help to walk, such as a caregiver, walkers, and sometime wheelchairs. Dementia along with confusion, tears, depression can be a part of every day life.

The fifth stage can bring incontinence, constipation, lack of eating skills, tube feeding, bed ridden, and can also stop the recognition of family and friends. PD does not take the patients life. Usually a lung infection or bad cold is the culprit that ends the life in the end.

As a caregiver, it is very important to have a compassionate heart with ill patients. The patient is suffering, sometimes not realizing why this is happening to them, or the fear of death may become an obsession along with fear.

A caregiver’s life can be quite stressful while taking care of the patient, a caregiver can actually forget to look after their own selves. You can become worn down, tired, stressed out, cry easily. It is very important that the caregiver takes good care of themselves, and takes the breaks that are offered.  You are not there just for the patient, or for the money you earn, you are there also for the family who is suffering right along with the patient.

To be a caregiver, it takes more than a body showing up to do a job. There has to be a desire from the heart to help this patient have the best quality of life he or she can  have. Someone to hold their hand, talk softly to them, read to them, and sometimes to just sit with them. When you can have this along with the daily care of feeding, bathing, dressing, doctor’s appointments, bill paying, you are a caregiver that everyone wants to have when the time in their own home, someone is needed.

As for me, I am tired, and I carry a lot of stress, but I would rather take care of my own brother who has PD, then to let him suffer alone in a nursing home, for as long as I can do it. I am gathering great memories, and will have these to ponder back on when this part of our lives are over.

We all need to feel loved and needed. ill and elderly can revert back to children, and we can all remember how much we wanted to fit in, and be accepted and to never feel alone.

I have taken care of a lot of patients, geriatric, mentally challenged, disabled children and adults, and the dying patients, but in my own personal opinion, PD takes the cake. It is the worst illness I have ever come across. There is no ending date, such as a cancer patient. PD patients can live long lives with this illness. There also is not that much information about PD, making it harder to get professionals to  understand what things are like at home.

I hope that one day when my brother’s time is near to go to see heaven, that he knows I did my best, and that I loved him very much.

I Could Not Let Recognition Pass


Late, last evening, I was reading my comments from all of you and I came across this one, letting me know that I had been nominated for the Silver Quill Blogging Award.

I was nominated by

http://vowforparkinson.wordpress.com/

Although, I had been nominated the day before, and had paid my many thanks to Paula, I could not let this go by without paying my thanks and recognizing her as a wonderful blogger. Thank you Vow!

Here is a little bit about this beautiful blogger lady. She cares for her husband who has Parkinson’s Disease.

About us…

Vow for Parkinson came as an idea from a friend. She pointed out the good it could do to share my husband’s story and how I handle his disease as a wife/med student. Vow For Parkinson is part of http://www.parkinsonpr.com, a webpage in spanish dedicated to inform about the disease.

This blog is for you honey! I love you with all my heart and soul.

____________________________________________________

Vow For Parkinson nace como una idea de una amiga. Ella fue quien me demostró lo beneficioso que podría ser el compartir la historia de mi esposo como paciente de Parkinson y cómo yo manejo la enfermedad siendo esposa/estudiante de medicina.Vow For Parkinson forma parte de http://www.parkinsonpr.com, un webpage en español dedicado a brindar información sobre la enfermedad.

Este blog es para ti mi amor. Te amo con todo mi corazón y mi alma.

Once again, thank you Puerto Rico!!!!!

The Rain, I Received This In An Email, And I Couldn’t Help But Shed A Tear


The Rain


Description:

It was a busy morning, about 8:30,

when an elderly gentleman in his 80′s arrived

to have stitches removed from his thumb.

He said he was in a hurry as he

had an appointment at 9:00 am.

I took his vital signs and had him take a seat,

knowing it would be over an hour before

someone would to able to see him.

I saw him looking at his watch and

decided, since I  was not busy with

another patient, I would evaluate

his wound. On exam, it was
well healed, so I talked to one of the

doctors, got the needed supplies to
remove his sutures and redress his wound.

 
While taking care of his wound, I asked him if he

had another doctor’s appointment this morning,

as he was in such a hurry.
 
The gentleman told me no, that he needed

to go to the nursing home to eat breakfast

with his wife. I enquired as to her health.
Description:
He told me that she had been there for a while

and that she was a victim of Alzheimer’s Disease.
  
As we talked, I asked if she would be

upset if he was a bit late.
 
He replied that she no longer knew who he was,

that she had not recognized him in
five years now.

Description:
 

I was surprised, and asked him, ‘And you still

go every morning, even though she

doesn’t know who you are?’
 
He smiled as he patted my hand and said,
 
She doesn’t know me, but I still know who she is.’
Description:
 

I had to hold back tears as he left, I had

goose bumps on my arm, and thought,
 ‘That is the kind of love I want in my life.’
  
True love is neither physical, nor romantic.
Description:
 

True love is an acceptance of all that is,

has been, will be, and will not be.

It Is Stronger Than Life


Illustration of the Parkinson disease by Sir W...

Tremors take on

More beats than a song

Anger shines through

Like the soul of a shoe

Finger nails turn gray

The heart acting this way

Tears I have seen

Showing Parkinson’s is mean

Not wanting to live

And has nothing to give

Stuck inside of this skin

There is no way he can win

Crippling the shell

Parkinson’s does oh so well

Stealing the life

Of a husband or wife

Does not want people to know

That the body  knows not which way to go

Legs freezing standing still

Causes the loss of his very own will

Life giving up and too tired to try

Want to lie down and just say good-bye.

Continuing of Rain Showers


 

English: Photo of sweating at Wilson Trail Stage 1

English: Photo of sweating at Wilson Trail Stage 1 (Photo credit: Wikipedia)

 

The doctor’s nurse did call back, and relayed a message from the doctor to me. He stated that one of the side effects from Parkinson’s as it progresses along, is wild sweats. Sometimes nothing else will trigger it, just the disease itself. He also said that Parkinson’s holds two side effects that hide until one day they pop up. One is a lung infection and the other is a bladder infection.

 

He explained that the entire body is going to suffer from this nasty disease, and that for some time the only things I will notice is the bending from the waist, tremors, and freezing, along with slow movements. In the latter stages, he says it is not a common thing for Parkinson’s to take Al’s life, it will be the hidden triggers, infections of the lungs, pneumonia, or some other organ in the body gets infected.

 

He told me to keep an eye on him, and if he continues the heavy sweating, I need to get him in to see him or to the ER for blood work to find where the infection is hiding. Al hasn’t felt good all day, and says the only place he hurts is his legs, but yet he says he doesn’t feel well.

 

He doesn’t want to ride his scooter, or go anywhere. He just wants to sit, and now laying down. He is cold, but probably because I have the air turned on lower to keep him dry, and he is a little clammy.

 

So, I am just watching and have prayed for God to give me a signal if he needs further attention by a professional, and if not, let him rest comfortably.

 

Al’s Words In My Writing To His Family


English: Two angels

English: Two angels (Photo credit: Wikipedia)

Tonight after supper, I sat down with Al and told him that I would rather write a letter to his two aunts, telling them what he wants to say. I told him that since my visit with Julie did not go as planned, that this may be the best way to go.

He started to cry. A lot of feelings came to the surface as the first thing that was stated from him, was they do not care about him.

Here is the short note, that I will now place in envelopes and mail tomorrow at his request.

 

 

I am writing this on behalf of Alvin Jr.  I have asked him to tell me what he wished for me to say in this letter. This is what he requested. He wanted me to reach out to you. He wanted me to speak on his behalf as he believes he may be nearing death.  Alvin is in the comfort care part of Parkinson’s.  Alvin is afraid you will be surprised when you find out that he has passed on, and this is the reason for this short note. He says,

Tell them that I am sick. Tell them that I have Parkinson’s and I don’t think I have much time left. God has told me my life is almost over.

Tell them that I love them.

Ask them if they still love me

 

This is what he wanted me to say, and so I have honored his wishes.

Alvin has been making last-minute preparations for his death. He had me take him to the cemetery so that he could speak to mom and dad.

He has had several conversations with God and he believes that God told him that his time is near.

Contrary to what people are saying, thinking, choosing truths or non truths is none of my concern.

Each birthday and holiday that came and went Alvin always cried because he feels no one loves him from the family.

I am not God, but thankfully God has taken me through this journey of caring for Al these past four years. I would not have traded this for anything that is available in this world.

Well, I have stated what he wanted me to state.

Thank you,

Terry Shepherd

 

 

As soon as I mail them, I will feel that I have honored Al’s wishes. I don’t know what else I can do for him, but if there is anything else he requests, I will try my best to honor it.

It will be an honor, joy, and privilege, to go to heaven and see Al there walking, running, and smiling, pain-free. We will both never remember these days of struggles, tremors, crying, tears and pain. Even if I go first, I know that I will recognize him immediately upon his arrival, and we shall embrace each other with loving hugs.