My Heart Is Broken


I haven’t blogged all day. I had some time to but just couldn’t. It is still hard but I need to. It heals me and gives me a soft place to fall.

Today I spent time with Al at the hospital. Then I went to the grocery store to buy the items needed for Christmas Dinner. Once home and putting the groceries a way I clicked on WP and then turned a way from it.

Now it is almost 8pm and the tears have begun to fall. It is strange how silence and a sense of loneliness come out of the woodwork once darkness falls upon us.

A Specialist, and Doctors along with Hospice had a conference and came to the agreement that there was nothing left to try for Al. They took him off of his remaining medications. The only thing he will remain on is his pain medications.

Al’s body is still continuing to contract. Now when you try to do a brief change or turn him in a new position he reeks in pain. He stutters from the pain medication. I can barely make out any words he is saying.

He realizes I am his sister, he recognizes the time but yet he is floating a little. He fiddled with his sheets, wadding it into a ball.  He picked at them, he was hot than sweaty. He was cranky and irritable.

He is being dismissed tomorrow morning to come home to remain here for what ever time he has remaining. The caregiver will be here and I am so thankful for this.

My heart is broken as I realize that Al will find no peace here on earth while he waits to be taken by God. My heart is broken because all has been tried and all doors are shut now.

I pray for a quick release for him. I pray his pain will be swiftly gone. It just doesn’t seem fair, not fair at all. Being mentally challenged didn’t give him opportunities for girlfriends, marriage, a family of his own. Being ridiculed by his Father sure didn’t make his life any better. Having a heart attack at barely over fifty wasn’t right. But now this, a terrible disease called Multiple System Atrophy, (MSA) is going to drag him to the end. It is going to force Al to endure the wicked pain until his last breath.

I am so glad and feel very honored that I have had these past six years to show Al what fun life could really be. I wish there was something I could do but there is not. I will do my best to bring him comfort. I will read the Bible to him, sing to him and hold his hand. I will continue to tell him how much he is loved. I will not stop until I know he is free of pain.

al and rhino4

Please God, Please Help


I am writing only because I just want to sit down and cry my eyes out. I know I have written enough posts for today but I just have to write one more, this one.

I am so thankful that Al is home. More that I can be the one who watches over him than strangers. I love him where doctors and nurses do not.

Al has not been himself at all today. I have learned through the day that there have been no real expressions from him but tears. I have found out that his vision is awful now. He can not see the wonderful Christmas cards you are sending. He tells me he is dying because he knows he is getting worse.

I don’t think he is getting worse as much as he is suffering the medication changes. He is on too many bad drugs now. It is a war I tell you. A tug and pull war. If Al and I want him to be pain-free, then it is drugs that are used. If we want Al lively then we trade that for pain.

His love for his vintage cars has disappointed him today as he can not even lift one car with his arms. He is so weak that moving him from the bed to a wheelchair is almost impossible. He is just like a bowl of jelly and he feels very heavy with his body being dead weight.

He did eat lunch which is a good thing. He wanted pizza for supper so I ordered it for him. With his appetite not dropping I have hope to carry in my heart. But seeing him like this just sickens me.

Oh dear God please, please take my brother home. I beg of you to not let him suffer anymore. I am assuming that his body is trying to adjust to these new medications but in the mean time, my heart is breaking as I look at a body that Al lives within but I don’t recognize.

When is the point when neither of us can take it anymore. God promises to not give us more than we can handle, but Lord? I feel today that I am at that point. Please hear me speaking Lord. Heal him, either bring him back to me so he can live a little or take him home. I know I can’t boss you God, but I can tell you my inner feelings, so here I am.

Naked and laying at your feet asking for mercy for my poor, sick brother, Al. Amen

 

 

 

god

Worse Night Yet For Al


Yesterday was awful, last night was terrible. Al got worse as the day wore on. By last night he was screaming he was on fire. Tears never stopped and I could not seem to bring the pain down.

I ended up calling Hospice around 11pm. At 1am a nurse showed up. She could see his pain and she called the doctor on call. I had never dealt with this doctor and I swear if I ever see her face to face I will have my way with her through words.

She ordered the nurse to give Al double one of his strong pain medications. In less than half an hour Al went nuts. He was screaming and crying. He swore his body was going to burn up. He began to hit himself wildly.

I couldn’t take it. I made her call that doctor back.  The doctor then ordered twice the amount of that pain medication. I said absolutely not,  hell no, no way. Find another doctor. Well there was no other doctor.

She reported that I would not do as requested so the doctor ordered him to take an extra pill that he usually takes. It is a calming pill. It seemed to work and he fell asleep. He slept for half an hour then was wide a wake, like wired.

The nurse called another nurse and she went home leaving me to wait here with Al for another hour. By now it was after 4am. The new nurse couldn’t seem to do anything with Al. His heart was racing at 282 beats per minute.

It was obvious to me that Al’s burning body was due to the heart going wacky from internal tremors inside the chest wall lining. When the nurse could do no  more she called that same doctor back.

The doctor ordered him into the Hospice House. The ambulance came and got him and left at 6am.

I went to sleep with tears streaming and slept for four hours. Now it is time to start final preparations for Thanksgiving dinner. All I can say today is I miss Al so much. I am dead tired, but I am thankful he is still alive on Thanksgiving Day. He may not be here physically with me but he is in my thoughts constantly.Al and Rhino, Nov 1

Not a Good Day For Al


Tomorrow is Thanksgiving and today, this very minute I am thankful for being here at home and not in a hospital with a heart attack or stroke. Today has not been a fun day. Al woke up with pains.

Pains everywhere from his feet to his neck. He struggled with breathing. Even when the Hospice nurse came today Al showed signs of breathing difficulties and pain. I don’t understand. I just don’t understand how they brush it off.

As his sister it was hard not to get overly stressed. He went through periods of burning all over he said to heavy sweating, to not eating. The helper was here today and she not only helped Al she helped keep me calm.

I got dizzy so much. My sugars dropped. I ate to bring the numbers back up and started to feel better than Al would start into a whole episode of pain all over. His head hangs so far down on his chest with all his skin hanging there it makes it so difficult to hear and understand him. His legs are contracting, his feet are contracting. His one arm won’t work anymore. It is just hard for me to watch.

This afternoon he started sounding like he was aspirating some. It looked like his mouth was drooping and he was drooling real bad. Breathing was hard.  I finally called Hospice back and asked for a nurse to come. The charge nurse said alright but a few minutes later she called me back.

She stated the nurse that had been here three hours ago said when she left Al was nice and calm, that maybe I just wanted him to go to the Hospice house. I exploded over the phone.

That conversation of the Hospice house had been brought up with the nurse earlier today that was here and I made it perfectly clear that I wanted Al home for Thanksgiving. I was mad that this nurse of Al’s would imply this after our conversation.

I started yelling at the charge nurse. I don’t know if Al will be discharged from this Hospice or not for my yelling at her but stress, worry and crazy words from her made me tell her about MSA and how it can change hour to hour.

She said she would document that I called and the symptoms I had told her. Al was given higher doses of pain medications and he finally fell asleep.

I keep asking these professionals, what is happening? what is happening? I don’t think anyone knows. I think they suspect that I will just go with the flow. Maybe a part of them is right, he has this disease that is incurable and there is no way to help any longer except pain medications, but does that mean I understand?

I am scared when Al gets like this. I can’t help it. Burning all over, pain levels that are higher than a six out of ten. Not eating, tears, crimson face, sounding like he’s aspirating?

The helper is going to come tomorrow to get Al up and see how he is. I told her she then needs to go home and be with her own family for the holiday. I am tired, and am thankful that I got so much of the food preparation done for tomorrow.

I am thankful for being here and Al being here with me, but I am scared, I can’t help it. I feel like I am walking in a dark room feeling for familiar things but there aren’t any, and when I don’t have Hospice nurses to count on, I feel totally alone and lost.blue rose

I Am So Honored, A Nomination For Being A Caregiver


A company called Wego Health has just informed me I have been nominated for an award for best of show.  I didn’t know much about it so I read more information.

Evidently this company reads my blogs and they feel that I am an advocate for patient care. They think I do a good job in caring for my brother. I don’t know what if anything happens from here. Even if nothing, I am quite humbled and honored to be nominated period.

I just wanted to share what I found out. I am so proud that M.S.A. is getting noticed by my blogging.

WEGO Health

WEGO Health

@wegohealth

A different kind of social network built to support health bloggers, tweeters, & community leaders – Health Activists who help others.

Boston, MA · bit.ly/wegohealth

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

You Must Be Curious


M.S.A badgeM.S.A. coverM.S.A. logoAl and Rhino, Nov 1I have had so many new visitors lately. Word sure gets around when you are speaking of illness.

I am so grateful for all the support I have received from each of you.

Today just has been pretty bad. Al started during the middle of the night with terrible nightmares, that lasted until 9am this morning, so I have been up a long, long time.

He has had terrible tremors, so much sweating I have had to change his bedding several times.

Forget the house, it looks terrible but today, I don’t care.

He refused food at all until about an hour ago when he ate one small doughnut with great struggle.

Hospice spent an hour here. Medications were once again changed, some taken a way, more added.

He has seen Rhino hanging upside down from the ceiling. A conversation and discussion was taken up with the doctor.

It was related to me that now that we are in the ending stages, hallucinations are going to happen. Not from the medications, but from the brain being so messed up with connection problems.

He has been on his light more today than any other time. Sometimes just to tell me he is done, or he is tired of fighting, that he wants to die. Other times it was because he was seeing things that were not there. He asked me what blue thing was flapping in the air and I finally figured out it was the blue TV screen.

He has slept little, he has been hot, cold, hot and more cold. Sweaty, dripping, swimming, you name it, he has been wet on his entire skin all day.

Rhino the cat is going nuts in his own way. He tries to comfort Al but Al doesn’t get it or sense it.

For those of you who have not been with me very long, I wanted to share what M.S.A. actually is. It is rare, about one in one hundred thousand people get it. Many doctors do not recognize the word.

Please read if you are at all curious. All of the symptoms stated, Al has.

http://david1000.weebly.com/

Tne Next Step in M.S.A.


Ever since Al came home last evening something hasn’t been right. Setting aside the fact that I could see he was very weak, I also tribute this to the fact he has been in a bed for five days.

But there is something else and I could not put my finger quite on it. Now that Al has been here all night and today I see a little more issues. Breathing for Al is difficult even when I am not moving him.

I did get him out of bed today. I pushed him to the kitchen table and he ate. He didn’t want me to feed him but it took him an hour to eat, but it’s alright, we weren’t going anywhere today.

The Hospice nurse came today to see Al. She checked him over. Al could not take his deep breaths like he needed to do so she could listen to his lungs. He leaned to the side and didn’t sit up straight. His voice is so soft and he doesn’t articulate his words so understanding him is very difficult.

Today I have seen him breathing deeply. He is struggling and I am giving him medication to help with this. I just checked on him and he is actually stopping breathing and then breathing again. It is not like that special breathing at the end of life, but very similar.

The Hospice Doctor and the nurse, and Hospice House all agreed that it was time for the next step. I have dreaded this for months and now it is here.

He can still go to Day Program if he can function here at home enough to go. I know he wants to go pretty bad tomorrow as they are having a Halloween party. I hope he can go too for his sake.

The other decision that was made is all of his medications minus pain and seizure and BM aides have been put a way now. Writing that sentence about rips me  in half. I am not dumb. I know what that means.

I want to write more, but I can’t write now. I just can’t deal with it, sorry.

Hugs to all of you who support Al and me, who have stood by our sides. I know you will each understand why I have to cut this short.waxpurple candlessnoopy

One of the Hardest Things To Hear


I am not going to make this long. I will just say that Al has not felt good for a few days. In his words, he says he fills funky. He has not eaten well for a few days. Today at his Day Program he blacked out and fell forward.

The Hospice Nurse just left our house. I want to take her simple and polite words and dissect them to death but I have to remain sane. I knew something wasn’t right when she made me leave Al’s room to talk to me.

I can still hear her words exact. ” Has he been talking about dead people? Has he mentioned anything about not being here long or taking a trip? I couldn’t find a pulse but did find a weak one in his feet. He may sleep a lot now. If he doesn’t want to eat or take his medications just give him the pain ones for his labored breathing. He is declining.”

 

Dearest friends, please pray for me. For at this moment, this very second I just want to throw up.I am not sure if I can do the waiting game, the over-checking on him, the stress and worry, watching his breathing things. I need help.oct 13 14purple candlesLonely_candleBlue_candleanimated-candles1.gifcandle-animated.gifAnimatedCandleThoughtandPrayers

Born Free


Al has been in Hospice House                                                            baby after bath #11

For three days

I am anxious for him to come home

I miss him in so many ways

But while he has been gone

My body and mind are no longer three

For I feel I have been born free

My thoughts are brighter

My smile is back

I want to jump and down

I feel back on track

This must be what respite means

Regenerating our souls

Ready to tackle another day

When I once again take on a caregiver role.

Written by,

Terry Shepherd

09/19/13