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

Beautiful Christmas Cards From Wonderful Friends MSA & WordPress


It is the season to be joyous. It is the season to be with friends and family. Being in my home most of the time I never dreamed I would spend the Christmas season along with Al, my children and so many friends from the MSA Facebook sites and WordPress.

I wish I could somehow express myself in other ways for how thankful I am for you sending Al and me these beautiful cards. But alas, the only way I know is to say a big thank-you.

I was just at the hospital visiting Al. They are still adjusting medications. The doctor, Hospice and I are all involved with his care.

It was very stressful to my heart as I walked down the hall to hear my brother calling out.” I’m on fire, I’m on fire. Please Lord, I want to die.”

I walked in and he was no different from when he was here at home. Before I left the nurse was giving him one of his pain pills.

Al expressed to me that he was going to stop eating. If they didn’t give him a shot to let him die, he would starve himself. He did eat 25% of his lunch while I was there. This is about the most he has eaten in a few days.

I had them weigh him since I haven’t known his weight in a few months. He has lost another 17 pounds. All together at this point he has lost 62 pounds.

Yesterday the Hospice nurse and I had that conversation which I posted about last evening. Today, she has changed her mind. She said Al is declining. The doctor said the same thing. They believe a lot of it is his attitude. I tend to agree but only because the pain is so high.

I told them I want him to go to sleep. I told them to listen to me and hear what Al says. I explained how I felt about his quality of life all over again. So far all they are doing is adding one more pill to the two that he already takes.

I know it takes time to see if this or that works, but I can barely deal with hearing those words come out of his mouth. He is just plain miserable, there are no other words for it. I have to wonder how I would be feeling if it were me laying there with MSA. I may be wanting to die too.

It brought me some comfort that all of them listened to Al say the words he was speaking. They could not blame his remarks on my tiredness any longer. I think it opened up their eyes that he is serious. To him this is no game nor is it temporary.

I told the doctor if he can get Al comfortable, that this is my only wish for Christmas this year. He gave me a hug and the nurse gave me a hug. I didn’t want the hugs, I didn’t say what I did for any reason other than the truth.

Maybe because so many families can’t or won’t care for loved ones they are in awe of my involvement. I don’t know the reasons for anything anymore.

I don’t know what makes family refuse to call, text, or turn their backs on situations like this. I don’t get any pleasure out of going through this alone. All I know is that when Al passes I have no guilt to carry.

Caregivers go through so many emotions. So many questions as to why things and people act as they do. But I do know one thing for sure. I have a huge, huge support group through MSA and here at WordPress. Believe me, I could not have done this thus far without the strength that you have given to me.

Always remember that I will never forget those phone calls from MSA patients. I will never forget all of the Christmas cards from those that were once strangers but are now a part of Al and my life. The gifts that Al has received and me also are priceless. I want to thank Marilyn for the wonderful gift package she sent and I received yesterday. It was definitely a surprise, a nice one. Not only have you driven all the way here to meet us, you have forever remained in Al’s mind with the coca cola hat. Now on top of all that you have done for us, you send us gifts. Bless you for being the woman you are.

I pray with all my heart that Al is here for this Christmas, but if he isn’t, I know he will be looking at the brightest star on any tree. I know that he will be standing beside our parents, and I know without a doubt he will be smiling down at me and standing by himself totally free of pain.

I hope all of you take a moment and thank who ever it is that you thank, but do it, be grateful for that grouchy family member. Be grateful that your parents are still alive, or that those noisy cousins were sitting at your Christmas dinner table.

I have three children. One is definitely going to be here. One will not and the other has never let me know anything. So for this Christmas I will give thanks that I can breathe. That I can see and touch and feel. I have so much to be thankful for and believe me I will be giving my own personal thanks to God.

I want to thank;

McGrandma Paul from NC for a beautiful silver angel card.

Sandy R. from NC for Al’s coca cola bottle ornament. He is loving it.

The Culbreth Memorial UMC Children’s and Youth Choir, NC. A lovely card signed by Nolan, Ethan, Austin, Hailey, Reagon, Elizabeth, Cailin and  Jennifer.

Lucy D. from VA for the beautiful Christmas wreath card.

Pam Bower, from Canada. Pam is one of the most important people in MSA patients lives. What a blessing that I have come to know her.

Ron and Carol D. from NC, what a beautiful Christmas tree and fireplace.

Thank-you all for making Al and my holiday much brighter. You are all truly angels in our lives.christmas tree 4

 

I Wanted to Say, Don’t Even go There


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

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

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

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

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

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

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

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

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

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

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

26 Hours And Still Awake


Hi my friends. I have now been up for over 26 hours with dozing in between. It is not me only doing this, it is Al too. Hospice says it is a restless syndrome right before the dying. I don’t know what it is and I can’t identify it any other way than fidgety.

Yesterday I posted but then I deleted it. It was a post on my feelings at the moment and not the entire scene. I guess I don’t do well when I have no sleep. I am crabby and can be short-tempered. I cry and I feel guilt at not being able to help Al in any way.

He is in God’s hands now and all I can do is make sure he is dry. Comfort is not something I can give him it seems. No matter what position I place him in he is not comfortable. I can sense his fear of dying but no matter what I try to say to make it feel better, it doesn’t work. Once again I think this is between him and God.

I guess when I am weak I become fearful, and this is why I deleted the post. I kept thinking afterwards, what will my friends think if they learn of me being angry, frustrated and sounding whiny.

Al sleeps about twenty minutes out of a couple of hours. He is on very high doses of medications but they aren’t working. Hospice was here for several hours today. The Hospice minister dropped by to see Al. Al had requested my son to come by a few times. I asked my son to please come over and he did.

The Hospice team, the Doctors and the Pharmacist are all working together and by Monday sometime there is to be a new medication that will enable Al’s body to go into a deeper sleep to help him pass into the dying process.

Al had been begging the Hospice nurse to give him a needle or a shot to end his life, but of course it is illegal here and the nurse told him she could not help him out. This only agitated Al more and this in turn caused more agitation from him.

Many times today I have cried out to God, what are you waiting for? He wants to come home, help him. I can’t sense a God here in our house, or even in Al’s bedroom. It doesn’t mean there isn’t a God here, it just means I feel nothing but tiredness and I feel almost numb anymore.

I have seen Al reaching up to the ceiling with his arms trying to leave. Talk about a tear jerker. It bring tears to my eyes instantly as if I am watching in slow motion a movie that is playing out and I have guessed the ending but have yet to see it.

I am not sure what I am running on. I can only imagine what Al is running on. It must be burnt fumes of earlier energy. Al is wetting extremely heavy. Almost every fifteen minutes he has soaked a brief. He is still drinking and eating but not very much. He has some sort of brown colored stuff that is coming from his mouth.

I keep dabbing it clean with toothettes. His mouth is dry but I imagine part of it is the medicine he is on. He sweats and then he freezes. He stares at me with those big blue eyes and when I asked him what do you want to say, he says nothing.

Rhino the cat will come in and jump on my lap and put his paws on my face or give me a kiss. I know without knowing cat language that Rhino feels the emotions running throughout the house.

I am ready to let Al go. I can no longer stand to watch his suffering and I have told Al many times to please go see Mom and Dad. Al has told me several times today that he loves me with all of his heart. When Randy, my son came to see him, he told him goodbye.

This tore at me so bad I broke out crying right there in front of Al. So life here at our house is its own living hell. It includes a lot of love, heartache, anger, tears, sleepiness, restlessness and any other emotions you can think of.

I will try to post once a day for now. Al does not like to be alone. He can be asleep and as soon as I tip toe out of the room he is wide awake. I love all of you, my friends and I think of you often.DSC00165DSC00162M.S.A. coverM.S.A. logopurple candles

Take My Love With You When You Know It Is Time


It is almost one am and I need to get some sleep. But before I can I want to thank you for all of your support and your great friendship. I couldn’t possibly have done any of this without either one.

It has not been a good day. It seems so many changes happen and I just about can’t keep up with them they come so quickly.

Last night I recognized a certain breathing Al was doing. With prior experience taking care of patients nearing the end, the memories swiftly returned as I watched and listened to him. It didn’t stop there.

This morning when I woke him for his shower, he looked at me like he had no idea who I was or where he was. Two ladies appeared at the front door and between them and Al I sat here at my computer in awe as I was forced to hear the rude comments coming from Al’s mouth.

He was angry and mouthy. He was definitely not himself. After the shower was complete, both ladies look exhausted. I knew in that moment the showers were over. It was bed baths from now on. When they brought the topic up for the next shower day, I wasted no time in agreeing with them. I do not want these nice gals getting hurt over Al’s weakness.

Al went off to Day Program as planned but when he arrived home there was no looking up at me as he usually does. No wave from his hand. There was only nothing. The bus driver kept giving me the look as she lowered him to the snowy ground.

I could tell that she wanted to tell me something but could not because Al was right there. I wished her a good weekend and took Al inside to a nice warm living room. I quickly took his outer wear off and looked at his communication book and saw that there had been issues during the day.

The comments were Al was very weak. Two staff had tried to help him with the bathroom duty but Al’s legs didn’t move. The two could not hold up the dead weight and Al slid down to the floor, so they would not drop him.

With extra help they got him back in his chair. He has a blood mark where he was injured and a report was made on this.

I had surprised Al when I went out to get groceries and stopped at his favorite restaurant and picked up supper. I nuked the food and started to feed Al but he wanted nothing to do with it.

It seemed that he was slipping a way from me. No emotions, no movements. I called Hospice and told about the incident from Day Program. She came over and checked him out.

His blood pressure was high. His heart beat was too high. He was not well. She and I looked at each other and we both knew we could not lift him to put him in bed. She called the fire department and within minutes five fire fighters arrived.

I know this is  hard to believe but with one of the guys in charge of removing the wheelchair away once they had Al up, it took all four of the others to put him in bed. When there is dead weight involved, what they weigh in reality seems doubled.

The nurse noticed some changes in his feet. Cold and a little dark. She was so nice. She helped me get Al’s clothing off and get him changed and positioned. Not many nurses do that and I was very appreciative.

When we left his room and we were in the living room she began conversations of what to look for with Al when he is passing. She gave instructions on what to do and who to call once that time was here.

I knew in my heart that Al didn’t have much longer. She told me with the visits Al has had from heaven that I needed to tell Al to take their hand and go.

She then grabbed her things and gave me the biggest hug. I felt like all of you were a part of that hug, it was so big.

After she left I went in and sat with Al. We talked about heaven and I told him the next time he saw mom or dad or grandma to grab their hand and go. I told him he has been a real fighter in this illness. I explained that if things didn’t improve by Monday he would probably not be able to go to Day Program any longer.

I explained that he did a good job all through this and how proud I was of him. I waited and watched him as he tried hard to settle down to sleep. Rhino came in and meowed and I heard Al say ever so softly, ” I will miss you Rhino.” With that Al went to sleep.

I am not scared, and I am not ready, but I know things are going to change again. I am so thankful that I have had the chance to be with Al and that I have Rhino.

Al, I don’t know when your time is going to be, but I love you brother. Take my love with you when you decide it is time to go.

Al and Rhino, Nov 1