One Day At A Time


My girlfriend left this morning after I cried too many tears. She did so much in helping to get my mind off of what is happening.

It is bitter cold still. It seems as if this winter is never going to ease with the cold. I looked at the Farmer’s Almanac and this crap continues on through February. What a bummer.

The nurse came this morning. She took off the Texas Catheter and placed a permanent internal catheter in. He did well with it after being medicated for relaxing purposes. His hands were so swollen and he just wasn’t able to release all of the fluids so this is supposed to help.

I am so tired but even more so since my friend left. She never knew what a rock she was and how much I leaned on her. I am so glad that most of us have that rock in our lives.

When the nurse finished with Al she sat and talked with me for a while. She said that she thought Al probably had days, possibly a couple of weeks but nothing in months.DSC00183 Last night Rhino, the cat was getting in my friend’s knitting basket. He was fascinated by the yarn.

rhinorhino 2rhino 3rhino 4

 

Please Pray For A Quiet Release


Last night was rough for Al and for me. Hospice came and with a Tylenol suppository the fever was brought down. After getting Al as comfortable as possible she took me in the living room so we could talk.

The gist of the conversation was his heart is shutting down. There is nothing that can be done anymore. For the most part my hope is now gone. I pray for a quiet and peaceful release.

This morning Al has a fever again. The reason for the constant fevers is his body is shutting down. There is nothing that can be done for the swelling. He is complaining of not being able to breathe, so I am getting off of here.

I had many nightmares of death during the night. I had real tears. I am so tired but I must go on for Al. The caregiver just arrived. I will talk to you all soon. Please pray for a quiet release. Al has been a fighter all along but now he just needs to relax and go home.

animatedangel.gif

The Vision


Short and sweet because I am trying to deal with what just happened. The only reason I am  posting is for your comforting words because I am weak.

Al and I have spent some wonderful quality time together tonight. But not all of it was good. He told me he felt like there was a big elephant on his chest. Then he told me he thought he was having a stroke.

I checked his vitals but they are not out of the ordinary of what they usually are anymore. Then he told me he saw trucks driving out of Egypt and in front of them was ladies with wings………………..

Nightangels

An MSA Caregiver on a Yo-Yo


How does a yo-yo go? Up and down, up and down, nice and steady, slow then quick.yo yo

This is how I feel. Slow and sleepy. Sometimes full of energy. Days of quick thinking, others too tired for one thought.

I wonder if this is how other caregivers feel? I wish in some ways they did, then I wouldn’t feel so stupid. And other ways I hope they don’t because this is no fun.

It seems anymore Al’s body is totally frozen. Me or the caregiver do everything we can to keep him comfortable. He has some good days which allow some laughter in the house. But mainly there are bad days, scary moments, when we hold our breath, wondering if this will be Al’s last day.

You know? I hate feeling that way. Who in the world keeps track of breathing, pain, and lack of movement, coughing, swallowing? It isn’t even normal. To a stranger it may seem like this gal is a human freak.

Today, Al was in one of his needy moods. He wanted everything and nothing. He was never satisfied. His biggest complaint was he wanted out of bed. I have heard this many times. I know that last winter when I was sick for 30 days, I spent most of it in bed.

I know how much worse I felt not being able to feel free enough to move around. I kept pondering on that as I kept hearing Al pleading to get up. So while the caregiver was here today I decided to do an experiment.

It wasn’t so much for me. I already knew the answers. It was more for Al. I wanted him to see for himself that he could not get up. I guess it was a test that I hoped Al passed mentally.

So the caregiver and I grabbed a hold of him from all sides and we set him on the side of the bed. The first thing I noticed is his legs. I hate to be so graphic but in order for you to understand how they reacted I have to speak it.

His legs reminded me of a fish just out of water. They flopped around with no control at all. Soon they quieted down and just hung there. I then asked him how he felt but he didn’t answer.

He wanted to stand. Before I answered that I asked him to hold his head up so he could see what he was doing, but he failed. He raised his head about half an inch but it wouldn’t budge above that.

I asked him to raise his legs to see if he had any control. One leg went up a couple of inches and the other didn’t rise. With the head being dropped so long I was afraid he would cut off his own breathing, so we placed him back in bed.

He still told me he wanted to try to stand. So I guess my test failed and he repeated his request for getting up. Now this is emotionally draining to me. I couldn’t please him and I couldn’t do as he wanted.

We are now using the fingers for yes and no answers. One finger for yes, two for no.  I can no longer hear or understand what he is saying. When I lean in close to him I can hear his voice, but still can’t make out the words.

Now he is laying there with no facial expressions. He ate two bites of supper. His hands are so swollen and puffy. I asked the nurse why this has been happening the past few days and she stated circulation, or lack of.

I hear Al rattling but we can’t use the Aspiration machine as the mucus is too far down in his throat, and yet his lungs don’t sound bad at all. He is not swallowing his own drool, and I think it is mixing with the mucus, making him cough so much.

So this is one of those bad days. I get so tired of reading my print back and seeing what a pathetic creature I have turned into. I have considered not writing anymore until this is over, but I don’t think I would survive as well as I have without your comments.

Let’s just face facts. I am not as strong as a Christian should be. I get too tired and too emotionally drained. I try, I really try to be positive, but it is darn hard, let me tell you. I keep finding myself begging God to release Al from his pain. Thousands of prayers are being said for him daily and yet he lingers.

If only I could make these last days worth living, but alas, I can not. All I can do is hold his hand, rub his arm, reposition him, keep him dry and offer him food. The rest is up to him and God.

I carry guilt over not doing better for him. Sorrow from watching him become lifeless, and anger at why he is being allowed to continue on with no purpose. I am sorry, today is one of those bad days. I hope for a better day tomorrow, but I need to be realistic.

Al has seen our parents and Jesus. He truly is the lucky one. He is my brother who has fought this battle with all his might. His legs may have flopped like a fish out of control, but his soul is beautiful like the fish of the sea.

fish

Same-O


Is it because it is the end of the year? Or is it because the hype of exciting and fun days of Christmas is gone? Or maybe it is because Al‘s illness just reminds me of an energised bunny; keeps going and going.energizer bunny

Is it because it is cold and dreary outside? Wow, too many questions. Now let’s look at the flip side of that coin.coin

The facts are I am sick at looking at myself in the mirror. No real hairstyle anymore. No cute clips, no real make-up.

Same old clothes, same slippers, same old thoughts.

Now this sounds like a woman who has been in a pile of knee-deep crap for some time.

I think this woman needs a change of pace. But how can I do that? I need, I want, I yearn. I sound like a whiny toddler. I am restless I guess. For years, and months, weeks and days, life is going in one direction.

A direction that will bring nothing more than sadness, tears, and a void in my heart. I want to stop it. I want to flash back to earlier times. I want to pull my hair out.

No wait! I want to roll my hair up, put the make-up on. Squeeze my fat feet into those four-inch spikes. Put that mini over my plump thighs. Put on a push-up bra and pretend I have something to show.

How about some long glue-on french nails? Some plum lipstick and some gorgeous blush. Maybe I will even get in my trunk and pull out those fish net panty hose that were so popular back in my day. What do you think? Do you think I am ready for a change?

Who’s with me? Paris, Hawaii, The Bahamas? Oh wait, I don’t have any money.

ladies

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

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

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

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