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

 

I Was Told I am JUST a Sister


I hope I don’t take more than one page to get out all I need and have to get out. This morning I awoke to a nice calm morning. But things change as you know. We never quite know what each day holds out to us. I guess that is where we really need to count our blessing other than those big moments.

I was drinking my coffee and talking to some MSA friends on here when the phone rang. It was the Hospice Hospital. The doctor was on the other end of the line. She said that she was going to keep Al another 24 hours as they had made a few medication adjustments and wanted to make sure he would be alright.

This is cool. I would hate for him to come home a mess. So he is coming home tomorrow. The next few sentences out of her mouth began rubbing me the wrong way. Soon I was frustrated then I went from that to plain old angry.

She told me Al was doing real good. She explained how their nurse aide had said he walked four steps and had no issues. This is when I started to become frustrated. Al doesn’t take four steps here at home. In fact he does need to take three steps to get from his wheelchair to the shower chair but he gets very upset because it hurts his legs and feet so bad.

Al looks like he is walking on his heels because of his feet contracting from this disease. I see his heels and they are so red. I do try to get him to continue with this as long as possible because he gets so much cleaner when he gets a shower over a bed bath.

She told me that he became upset and angry over a football game last night so she gave him one of his new medications and that didn’t work; so she doubled the dose and then he became quiet.

Alright, I am just listening and not speaking as she goes on to tell me how amazing it is that he is so good. She then changes the topic to stating she had called Al’s regular Hospice nurse and that nurse tells her that Al really isn’t declining much. She says he is  pretty much the same as when he started Hospice.

I think my eyes probably got big as my daughter always tells me when I start to get upset. She goes from there to telling me that I need to start remembering that she is the doctor and all I am is the sister.

She stated in no uncertain terms that I directly disobeyed her orders to double up Al’s pain medication and then I quit being quiet. I told her that I had went up to almost double the first time she wanted it upped on Thanksgiving Eve. But after I saw how he changed and he started hitting himself and screaming and cussing I was not doubling the dose within an hour as she wanted.

I explained that I did not want to see what damage he could do to himself over this. I asked her to try some other medicine but she was persistent even after Al was beating himself up.

So on the phone she was scolding me reminding me that I am nothing compared to her. Her next blast of words were that he isn’t declining for what he needs to be. She said she was having a meeting this Thursday with Al’s regular Hospice nurse, who already told her this morning that Al isn’t declining and she was 90% sure she was going to release Al from Hospice.

My heart sunk. I know what I see here. He has gone from five days at Day Program down to two half-days because he is declining and becoming weaker. He is almost 90% bed bound except on Day Program days.

He can no longer stand more than a few seconds and when he does it is on his heels because of his feet contracting. He has to be fed liquids and foods about 75% of the time. Last month he could still feed himself most of the time as long as it was finger foods.

His medications have been changing all the time because pain continues to get worse. His entire body is contracting. His head hangs on his chest. You can barely hear or understand what he is saying.

But according to the doctor he is not declining. She said that he will probably have a few more months to live. All of a sudden I was enraged. I felt although I can not prove it that this was to get back at me for not following her orders, since she did make that perfectly clear.

She stated that she would only release him if I promised to her in writing that I would follow all of her orders when he did come home until he was dismissed from Hospice.

All I could think of is I am going to be forced to place him in a nursing home. Why? Because it takes a lot of money to purchase briefs and pads.

They send a case at a time when they send his briefs. He wears two types, pull-ups for Day Program and tab types for when he is home in bed. He also uses quite a few chux pads. The bill is about two hundred dollars every couple of weeks. I can’t afford that at all. I already pay for what ever he needs here at home, food, clothing, anything that Hospice or Medicare/Medicaid doesn’t cover.

She said that she will let me know this Thursday her final decision. I hung up and sat here and almost started crying a pond of tears but I had to leave to go to the pharmacy to pick-up my medications for myself since Al will be home tomorrow I won’t be able to get out as easily.

When I went to the pharmacy the owners and I were talking about it and they told me to talk to the Hospice right here in town. I asked them, ” Why should I?  If Medicare won’t consider him acceptable in another county, they won’t here either.”

The owner convinced me to at least try. Just run over there and talk to them is what he said. I grabbed some lunch because I had forgotten to eat breakfast in the chaos of things. Then I went over there.

I was very upfront and honest. I explained everything that had been going on today and for the past six month history. She asked me if the doctors had ordered gel pain medications and I said no, and she wondered why.

She said from everything I was saying he is declining and they accepted Al in their Hospice care. We hugged and I told her as soon as I got home I would call the other Hospice and tell them the new Hospice information, which I did.

Now I am in waiting time. Waiting for Al to come home. Waiting for the two Hospices to talk to each other for dismissal and admitting. He will still get three showers a week. He will get a nurse in this area for visits. I will even get home maker time hours for me. From what I learned they will send someone out to tidy up his room or something.

So I had no trouble calling the now Hospice. If I had to do it over again, I wouldn’t change a thing. I may be the sister but I know how he reacted to the increase of medication. Even the Hospice nurse that was here was shocked at how it was a negative reaction to the increase of meds.

I know in my heart this doctor is upset with me because I didn’t follow orders, but hey, this is a real person, and my brother. He is just not another case. So I am calmer now and this is good for all around. I made the right decision and as far as the Hospice Doctor is concerned…………she needs to remember why she became a doctor. You just can’t shut up noisy patients at any expense, pain is pain no matter what title you hold.M.S.A badgeM.S.A. logoal and rhino4

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

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/

A Valuable Lesson


Every evening I call Al at the Hospice House, and every time I hang up I am sad. You ask me why? Because the nurses say he is doing fine.

Tonight I called again and when I heard those same words I blurted out, ” If he is fine there then why isn’t he here? When he is here he cries a lot. He is so sad. Why isn’t he like that there?”

The nurse probably thought I was on crack, asking something like that. It probably sounded like I wanted him to be crying, but of course I don’t.Women_cocaine

After I thought about it a quick second, I explained, ” Oh I don’t want him to cry. I am just trying to figure out why he is happy there and not here.”

She started laughing and I could sense  her relief that I was not the wicked witch of the west.Wicked_witch

She broke it down a little for me and said, ” He does cry here also, but not continuous. He speaks of death here and he says he is afraid to die. I told him that I was afraid to die too, but we all have to do it. Mr. Al, you have to think about the positive and get a way from the negative. Yes, he cries here, plus here he has different aids here at all times. It keeps his mind busy. Also, he doesn’t get out of bed unless he wants to or ask, and he doesn’t ask.”

I listened with intent trying to pick up on anything that may help me here at home with Al, but I wasn’t getting anything to really grab a hold of then she made the comment that put the puzzle pieces together.puzzle-pieces

She asked me one question, do you have kids?

Why yes I have kids, they are all grown up.

She went on with her explanation.” Do you remember when they went a way or they went to Grandma’s house for a week? Remember when you went back to get them and Grandma always said they were angels? Well this is Angel_Wings__Animated__by_Iaenichow Al is too.”

I thought back to my kids when they were little. They would be the best darn kids ever and then suddenly with no warning they were causing me headaches and stressing me out to the max. I couldn’t wait until they went to Grandma’s.

I laughed out loud at my own thoughts and she continued on. ” This is how Al is. He is here. We are strangers, new people to see and get to know. He hasn’t learned how to  press our buttons. Yes, even very ill patients can learn how to press the caregiver’s buttons. He is comfortable with you, where as here, he is still on guard of his actions. This is all there is too it. He is better here just like your kids were when they went to other homes.”

It all made sense. I didn’t want to hang up this time and weep because I wasn’t doing something good enough, or worse yet, discover he liked it elsewhere better than home. The fact is he loves me enough to let all his feelings show here at home. I should feel honored I guess but somehow seeing the sad, depressed side doesn’t thrill me. But, it does make me feel better to know that our life here at home is normal and he loves me enough to let his hair hang down and be free to be himself.hair hang down

I Am Still Standing


I live in such a small speck of the world and yet news travels quickly from within these walls. A good example is I was telling you I am a wreck. I guess Len  said it best this morning, I am sort of a control freak.

I don’t mean that I have to control your life. I have to control what is going on in my own home and this means Al‘s disease too. When I can’t help him, when I feel helpless it freaks me out.

The phone rang earlier and it was the Hospice Social worker asking if he could come pay a visit to Al. Of course I said yes. I told him Al was asleep and not to feel bad for waking him up. Al sleeps most of the day a way so he will go back to sleep, which he did after Chuck left.

It turns out that he was observing Al and I didn’t realize it but he was observing my actions and expressions. Word had been sent through out Hospice and the nurses and doctor knew Al was beat and I was exhausted.

Chuck visited with Al while I changed Al’s sheets. Chuck asked Al the normal question, ” how are you doing?” That’s all it took, those few words and Al was out of control. The tremors were bouncing off the walls. His tears were flooding and his words were I want to die but God won’t let me.

He got so emotional I just sat down on Al’s newly made bed and let out a big sigh. Chuck observed Al for a while and listened as well as he could. You can barely understand Al anymore between his tears, tremors and soft voice.

When the visit was over Chuck told Al, ” You are a lucky man. You get to live here at home with your sister. Do you know where you would be if she wasn’t taking care of you?”

Al shook his head yes.

” So we are going to give your sister a break. Tomorrow after you get home from Day Program, I will send the ambulance down here to pick you up so you can have your very own vacation and get spoiled rotten by the nurses and the food. You are going to the Hospice House.”

Al asked, ” do I get to come back home?”

” Yes, you get to come back home.”

” Alright I will go.”

So someone heard, someone responded, friends from Facebook prayed, WP friends prayed. I get a break. I get to sleep some of this stress off. I will be rested when he comes home and be able to be a good caregiver and sister to Al through the next chapter of this illness.

I don’t know exactly what time he will be picked up, but from what it sounds it will be around 6:30 tomorrow evening. He will stay for five days and then return home. Thank-you for being my angels, my dear friends. This is tough, it is the worst I have lived through for so long, but I am still standing.horse

Quick! Where is the Straight Jacket?


I didn’t want to do anything today. I didn’t sleep well last night. Al was a wake through the night, not wanting anything really. Seeming a little confused. I am feeling guilt this morning also.

I got a call from the Hospice nurse stating Christy the regular nurse Al sees will not be here today. That the nurse last night who was here will be seeing him instead. Oh dear, what have I done, is what I was thinking.

I remember being so  upset yesterday that the Day Program has said they tried to call Christy but she never called back. I knew that there had been two occasions where I had tried to get a return call from her but nothing.

When the other nurse appeared last night I blurted it out that it wasn’t right for the only link to Christy was through her phone and the fact she doesn’t return the calls is very upsetting to me.

I just hate getting anyone in trouble period. Of course it could be that Christy was just off or ill or something. I have a bad habit of thinking the worst at times.

I looked around the house and thought the hell with it. It will still be  here later today. I am still in my house coat after taking care of Al this morning. I did get him up and he went to the kitchen table. His voice was so soft I could barely hear what he was saying. I just have having to say huh, what did you say?

He ate a smaller breakfast but he did eat. He once again said he is going to die very soon. I don’t know what it is about me that is wired wrong but I am like the person who has to know how everything works and how it fits together.

I sat down with him while he ate and asked him what makes him think he is dying. He said he just knows inside. He said he knows he is getting weaker. He said his nails are getting grayer.

I had always been concerned about his gray nails too but Hospice says it is no big deal and not to worry about it. Of course my come back in my mind is then why aren’t mine gray.

I have found myself trying to give explanations to anything. Example, he ate breakfast, even though it was small, he ate. He isn’t dying. He just doesn’t feel well. Or he is alive and well this morning, so last night, what was that all about? What did the nurse mean when she said he is declining?

I don’t see any real major changes. Yes, he is definitely weaker in every way, but that doesn’t mean he is dying. I am making myself so ill that I am constantly running to the ladies room from my nerves being infrared.

The fact is I don’t want Al to die, and on the other hand I want him to go home so he can be pain-free. I don’t know when he will leave. Al can’t possibly know when he is leaving. He just feels like it won’t be long. Maybe he is right, maybe his is wrong. Maybe he is just having a rotten day.

No one seems to know why he blacked out yesterday. No one seems to know any direct answers, and I think this is what is wrecking my emotions. Watching, listening, checking on him often.

I  hear his labored breathing. I see his hands turning white but his nails remain gray. I see him eating. I see him declining in some ways. I see me  a ball of mixed emotions. Why can’t I just settle down and accept the truth. Only God knows. I guess I don’t want any surprises?

Wow, why would I even think such a stupid thing. Hospice is here. They are only here for one reason. This is no surprise.

I better quit before one of you comes here and puts me a way for going nuts.  All I know is I love him, I see what I see. I hear what I hear and God only knows the rest. Well I have to get dressed now and straighten up the house. The phone rang and the Hospice Social Worker called and is coming over. Now what………….

stressed