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

The Planning Continues


Today you would need two sets of hearing aids in order to hear what Al is saying. Yes, his voice is that soft. He has been still in his planning stage. He has sorted cars, from old to newest.

He has spoken about his viewing and his funeral. He has chosen where he wants to have his funeral. I liked his choice because that was my decision also. He has talked about his funeral.

He has been very apologetic today. He has apologized for almost anything. I keep telling him he doesn’t need to but he continues.

Hospice has now taken one of his medications and turned it into a gel form. He has a liquid medication for pain also and one seizure medication. This is it. All other medications have been placed in the cupboard.

He has gone extremely down in this area. From 15 meds to 3. He didn’t sleep good last night and I am so tired of being dizzy from lack of sleep that I slept most of the morning a way and let the care giver do her job.

I hope for a night of sleep, this is my goal for the day. I did venture down to the mailbox through about 8 inches of snow. It has snowed all day long. My son came down and plowed the ramp for me. I was very appreciative of this.

So all in all, the day hours have not been to bad, but I will admit that planning viewings and funerals with the patient is difficult for the sister. I am going to let him go in his favorite clothes. You probably don’t need to even ask. Yes, Coca Cola of course. If only the company knew how important their product is to Al, they would feel so special.

white-trees.jpg

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

 

O Happy Day


Oh happy day, it is Monday. Freedom, I get out of the house. Now don’t think I am a nut case, but being in the house for 48 hours with no fresh air, I feel like a baby chick bursting out of my shell.

Even Al woke up with a smile this morning. It sort of rubs me the wrong way because he doesn’t smile for me usually, and I am the one who works so hard to get one smile. I can understand on the other hand though. Hey, he gets a way from me for a while. Although he ask to be in his bed, he breaks apart from it too.

My Christmas tree took a dump on me. The lights have trickled out over the weekend until I have one little place lit, so off to Wal-Mart for new lights.

So as I say Oh happy day!

Living is for the Breathing


castle 4Floating on the surface, waves gently passing me by. Fish tickling me as they swim by, life is good. Sun peeking out from foggy skies. I am alone. Only God is with me. I am forced to accept me for what I am able to do. I have to say hello, to hear my voice, but the only one who answers is me. Hearing the sound echo from the depth of my soul I recognize myself but never knew me before.

A tiny sperm helped mold me into the form I take today. Years of learning, hearing voices, recognizing right from wrong. Yet today I wonder if the decisions I make are right for me. While God is holding me above sinking ground I have no choice but to live or die.

Is one better than the other? Is death more beautiful than life? I have the opportunity to find out now, but no, I am not ready. Although many speak of glorious lights, golden paths, love being the air we breathe, how can that compare to what I see in my view today?

Would it make a difference if I could fly to heaven and see if it is what I have heard? Would it make living easier if I knew for sure something better was waiting at the end of the rainbow?rainbow 3

Could we live with our bad choices knowing the consequences will be short?

We live in the moment, we hope for the best. We error, we win, some times we weep in our pillow.

I have come to the conclusion that although there is fear of tomorrow and heaven is golden, we need what we are dealt with each moment here on earth. We would never appreciate the here after if our lives were not filled with tests.

One day my work will be done and God will call me home.  I will look back in my own book and smile as I know I gave all I had to give. The mistakes that I made will have been done without vicious intention. Desires that I dreamed of, wishes that went unanswered were meant to be.

Life is good. Heaven is wonderful. I am here for a purpose and I will decide to enjoy the rocks in the road. The valleys I will climb out of. The choices I make I will accept.

Living is for the breathing, looking back we won’t see our footprints. We have no choice, we either live or we die. Hold on to your hope, follow your dreams, one day you will close the last page of your book and you will smile.

You See That Mountain?


My Mountain

You beat me

When I was down

You whipped

Me to the ground

But now I

Am a man

Standing

On two feet

On solid ground

I ain’t gonna take

It anymore

You’ll never

Whip me again

For you see

That mountain over there?

It has my name on it

And I am going to

Climb it to the top

Open my lungs

And yell

Freedom!

This is all mine

And I’m gonna

Place a stake

On it right now.

Written by,

Terry Shepherd

11/11/2013

 

 

 

flowing water

#FWF Free Write Friday; Beautiful People


http://kellieelmore.com/2013/11/08/fwf-free-write-friday-beautiful-people/

Tell me about a beautiful person you know…

I know of some beautiful people whom I have never met. I just feel it, I see the consistency of their words post after post.

There are also beautiful people who I will never meet. Those that are deceased. People who did amazing things in their lives. Helen Keller, Rosa Parks, Abe Lincoln, so many that are beautiful.

But there is one beautiful person that I have known over 35 years. I have met her and spent numerous times with her. This beautiful person shows great character. Her belief in God is very strong. Her heart is big enough to hold many people in it.

She has suffered from personal disappointment like all of us have. She has wept like you and me. What amazes me is her strength. She gets kicked down and yet climbs back on that horse determined to move forward.

I love her very much and can not imagine my life without my best friend Lez. Thank-you girlfriend for walking into my life so many years ago.kids sledding

Live Your Life


She sat on the bus bench. She wasn’t going anywhere. Grandma just liked watching the people come and go. Talking to the young crowd, handing out cookies she had baked the night before. It didn’t take long at all before this bus stop was a popular place to look forward to.

There is such a big generation gap between the young and old. Values are different, a faster paced world is what we live in today. So it is no wonder that the few minutes while waiting for their bus to arrive, it was a breath of fresh air to have someone to chat with who seemed to care.

I can see my own self in this picture I painted. I could be the grandma on the bench. Handing out cookies to the people. Getting old is not really that golden era we hear about. It may be if you still have your long-standing mate by your side, I guess.

But when fate comes and wipes half your slate a way, you suddenly realize it is quiet when you get up and it is hushed when you lay your head down at night. Silence is golden when you live a hectic life, or raising the busy family, but what happens when the kids grow up and move out?

Who is going to fill that void? I will probably be one of those bell ringers at Christmas time just so I can show others that there are still smiles in the world. Maybe I will be the Wal-Mart greeter lady.

I can sit on my stool and make sure to welcome you in to the store, but what I am actually trying to show you is that age is only a number. We are born with one heart, a set of feelings, and we each feel in the same way.

We want joy and happiness. We want to feel we belong some where in this world. It just makes life nicer. An added touch when you are running late for work. Or your spouse and you had a disagreement on the way out the door this morning.

Yes, I will always be trying to show the younger generation that life is still good. They need it more now than ever as families split and people become more engrossed in themselves.

What do you envision doing when you get in your prime of life? Retired sitting on the beach some where? Raising maybe your grandchildren? Will you be taking care of a family member? Or will you still be reaching out to others in any way you can, even if it means sitting at the bus bench handing out cookies, to people you know.

bus stop

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.

Daily Prompt; Google and Rescue Operation


http://dailypost.wordpress.com/2013/11/06/daily-prompt-searching/, DP, Daily Post

What was the last thing you searched for online? Why were you looking for it? 

Photographers, artists, poets: show us SEARCHING.

Wow, this is an easy post. The last thing I searched through Google was Hospice. Makes sense doesn’t it after what happened here this morning.

Hospice is for patients that want to remain at home and who are dying within a short time. I am learning quickly that although Medicare governs Hospice, the group working within each area can be quite different.

You have firms that have loving people who really care about the patient as much as they do themselves. Even in one group, the shower gals, there are wonderful, take their time people who give patients showers. Then there are those others who want their paycheck. They rush into your home at the last-minute, rush the shower, leaving you, the care giver, wondering if they just sprayed water over the patient.

Hospice is a wonderful program. It keeps many patients out of nursing homes and in the comfort of their own bedrooms and beds. Family and friends always feel more comfortable visiting in a home setting, especially one they have visited in many times before. When you think of the cold nursing home room and the ever-changing staff and the lack of personal touch, most of us would prefer to die in our own familiar territory.

I guess what it boils down to is compatibility. Hospice, staff, patient, family and care givers all agreeing on the quality of care.

This is actually what Hospice is. My job is to get the best help for my brother that special heart to heart bonding and caring attitude. This is why I am looking else where. To me, when someone you love is dying, the waters should be calm, the voice low, the joy pure, and the best memories in the making, resulting in peace and tranquility.peace

 

What is Hospice?

  • Hospice is a special concept of care designed to provide comfort and support to patients and their families when a life-limiting illness no longer responds to cure-oriented treatments.
  • Hospice care neither prolongs life nor hastens death.
  • Hospice staff and volunteers offer a specialized knowledge of medical care, including pain management.
  • The goal of hospice care is to improve the quality of a patient’s last days by offering comfort and dignity.
  • Hospice care is provided by a team-oriented group of specially trained professionals, volunteers and family members.
  • Hospice addresses all symptoms of a disease, with a special emphasis on controlling a patient’s pain and discomfort.
  • Hospice deals with the emotional, social and spiritual impact of the disease on the patient and the patient’s family and friends.
  • Hospice offers a variety of bereavement and counseling services to families before and after a patient’s death.

History
The word “hospice” stems from the Latin word “hospitium” meaning guesthouse. It was originally used to describe a place of shelter for weary and sick travelers returning from religious pilgrimages. During the 1960′s, Dr. Cicely Saunders, a British physician began the modern hospice movement by establishing St. Christopher’s Hospice near London. St. Christopher’s organized a team approach to professional caregiving, and was the first program to use modern pain management techniques to compassionately care for the dying. The first hospice in the United States was established in New Haven, Connecticut in 1974.

There are more than 4,100 hospice programs in the U.S., Puerto Rico and Guam. The majority of hospice programs are Medicare-certified. In 2008, over 1.45 million individuals in the United States received hospice care*.

Hospice is not a place but a concept of care. Eighty percent of hospice care is provided in the patient’s home, family member’s home and in nursing homes. Inpatient hospice facilities are sometimes available to assist with caregiving.

What is Covered Under Hospice Care?
If a person has a terminal illness or disease that is no longer responding to aggressive care, they are eligible for hospice care if two physicians can certify to their condition and prognosis. One of these may be the hospice physician. The physicians will certify that if the diseases were to run its normal course, the patient may be expected to die within six months.
This does not mean that the person will definitely die within six months. The course of decline in a patient with a serious illness varies from disease to disease, and even from person to person within the same disease. It simply means that for the foreseeable future, if the illness continues as it usually does, the patient may be expected to die.
What may a patient and his/her family expect to receive in hospice services?
Hospice covers all services, medications and equipment related to the terminal illness. These include:

 

  • Physician services
  • Nursing services
  • Home health aides
  • Medical equipment and supplies
  • Medications for pain relief and symptom management
  • Dietary counseling
  • Continuous care during crisis periods
  • Trained volunteers
  • Physical and occupational therapy
  • Speech therapy
  • Respite care for the family
  • Social work services
  • Psychological and spiritual counseling for the individual
  • Bereavement services for the family for a year after death