George and ALS

I freak out easily. Any new development to my PALS and I freaked out. This morning I finally learned how to clean out his mouth with dental tips. A few hours later, I saw white foamy saliva filling his mouth. It is in a way something new. I saw it once only and that when he was coughing hard. I looked at it and contained myself. I helped him to the den, got him seated and left him there to read. Coming out, I suddenly felt like crying. I went to the bathroom, sat down and cried. When I cried yesterday, I asked myself why I was crying, because I feel sorry for him, my mind responded. It is the same today. I felt restless, unable to resolve it. I cast in my mind what to do when it came to me, I have not done my daily meditation. I set the timer at half an hour, and sat down to meditate. I commend him and family to God and emptied my mind, staying in meditation. Something told me all will be fine. How will it be fine when he has Als and there is no cure? I mused. Again that feeling all will be fine. I left it to that feeling and enjoyed it, the softness it brings, the silence, peace and comfort.

I find blog so much easier. It is like thinking alone, in privacy. A means, a source for outlet. I was just thinking a blog is so much better for me when I came across this – blog. My head is so tired, a tired band across it. My sister suggested I write on taking care of my PALS. That would not do it for me. But writing about this trip since almost a year ago? I am able to do that. Any restrictions I wonder.

It was very traumatic the first moment I read about Als – in its stark reality. Of all things, the first article I read was the one putting everything in black and white. I read it and instead of seeing the described symptoms occurring to my husband, I experienced it as though happening to me. I alive, mind alert and my body slowly closing down on me, slowly going completely paralyzed. I felt the full horror of it. Oh God, how can such a horrible disease exist. I went to the bathroom and cried and cried every time it came to my mind after that.

The one time I experienced panic attack was the time I had eye surgery and was not able to breathe. Until then, I did not realize I have that problem. I use my mind to slowly calm myself down. Instead of saying, I cannot endure this, I told myself, I can, I can…

I reflected on it and decided one of the worst sufferings a person with Als can experience is that, – panic attack, unable to move, unable to breathe.

Ever as I felt the losing control, I found myself thinking of Stephen Hawkins. One can enter inside oneself, he entered into his mind and lives with his mind, his entire body paralyzed. When it happens, and one has no choice but to endure, one gets the strength to endure. Our survival instincts is so strong, it will teach us how to hang on and live.

As I write this, I find tears filling my eyes. It is such a cruel cruel disease.

We are a minority.
PALS and carers.
It is indeed an exclusive club.
One would rather not be a member of.
Unless it be as volunteer.
Standing on the sidelines.
Touched by Als.
We are never the same again.
Tears come easily, flow easily.
There is so much pain
So much heartache involved.
Sharing about Als.
One knows from responses.
If the persons know what Als is.
If their response is…
I am sure he/she will get better.
We know they do not know the disease.
When we see sympathy and empathy.
We know they understand what it is about.
The sympathy and empathy
Is all the more marked with carers of PALS
Of those closely touched by it.
There is that special caring.
That unique reaching out.
They had been through their own hell.
Dealing with the disease.
And reach out wanting to help in any way.
To do anything they are able to.
To alleviate the pain.
Such is the attitude of the man
Who manages our funds.
On hearing about my PALS.
He works so hard reaching out.
Wanting to help me in any way.
Offering a listening ear whenever I need it.
He lost his father to Als.
Oh cruel disease.
How could anything so cruel exist.
He remarks the wonderful thing is.
PALS are such upbeat people.
He marvels at it.
I see them here, brave souls.
I cry for them.
I cry for my PALS.
I cry for myself.
I cry for the pain involved.
The heartache.
I cry especially for those
suffering this cruel disease.
For me, the most cruel aspect of this disease.
Is the lack of hope.
With cancer, one could fight and hope.
With this there is no hope.
Once diagnosed, it is like a death sentence.
I know the pain will always be there.
If there is any blessings in disguise.
It is as Pepsiman experiences it.
It makes us different as a person.
No longer do we remain indifferent.
To death of anyone, of sicknesses or sufferings.
Any death is so painful.
Yet in the midst of it all.
There is hope.
Hope of a Christian.
Hope of a person.
Knowing there is a beyond.
This life is not it.
It will end and we live on.
Our spirit will live on.
There is a life beyond.
We are but pilgrims passing through.

A few weeks ago when my husband lost more of his speech, he was very sad and cried very often. It was very sad. A week ago his mood changed, he became very peaceful again and happy. He told me yesterday he is happy. It is such a wonder.

For months ago I was often very serious, sad about his condition. A week ago, it came to me one day to put life into him by playing with him. I used to play with him a lot till he started writing books and got mad every time I caused him to lose concentration. Ii started playing with our dog instead and gradually stop playing with him. I do it by playfully shaking him gently and telling him to come alive, it is a good day kind of thing. He would smile and laugh silently. They are right, posters here. One should live day at a time and make the best of it.

He takes to thanking me also for everything I do for him and tells me he loves me so much and I am so good. This morning I thank him for being such a good patient. It came to me I never thank him for that and he is such a good patient. The nurses all love him and find him very sweet. He suffers silently and is never any trouble except when he gets into those delirious states. He would get restless, fidgety, wants to remove his catheter so he could pee. I have to show him the bag each time and assure him, he is peeing. He would see things and talk to me long time. I strained very hard to catch what he is saying and often could not. This morning I caught a few sentences. He told me today will be a very good day and to utilize him.

It is such a thing of marvel, the way he is so peaceful and happy. 30th December and he says it is going to be a very good day.

Sometimes like now I feel a kind of inner desperation, like I am hanging on a thread and at the same time I continue on, hanging on that precipice but holding on, going on operating from that higher up resource of strength, closing my eyes to my inner depletion.

I just feds my PALS. These days every time I feed him through his feeding tube, he started silently crying, the motion pushing the liquid food back up. I took to laying towel around so he would not get wet.

He does not want to know what he has. Sometimes I feel it easier if he knows what he has then he would not feel badly laying in bed – or feels he has to force himself to get out of bed and do something. I told him to move with his body, to stay in bed if his body feels like it. This afternoon, he still forces himself to go to his computer then to his den to read and a couple of hours later gave up, moving back to bed and crying.

I am sneezing, oh lord, not a cold. I hope not a cold.

I cannot cry any more. It is like I am frozen inside, doggedly dealing with issues as they come up. I live like a hermit, often going to Post Office only and back. This might drive another person demented but I am fine with it. I do not know how to reach out to anyone but the hospice. I am very grateful I have that. I lived pretty much cut off and isolated with my hd all these years. And now I do not know how to reach out. It could be coming here from another country and culture. Today my mind goes, if my PALS is starting to wander out middle of the night in the cold freezing temperature with his walker, what will he do next? The only saving point is, he is not able to do most thing without assistance. Last night I sensed it would work better if I let him do what he wanted and slowly turn him around than not letting him do what he wanted especially when he was so obdurate about it.

It is interesting, this morning something taught me to arrest, suspend all thoughts and simply focus mind on the matter at hand. I did that almost the entire day, my movements slow and deliberate as I attend to things, suspending thoughts. Reflecting on it just now, it makes sense. Thoughts often make things complicated. Empty thoughts and life becomes more simple and straightforward. Something told me also all is fine. My PALS promise he will not go out into cold night again which could account for the feeling all will be well.

At 11.40 pm last night, my hb woke up and tried to put his pants on. I helped him, all the while asking him where he is going. He told me where, I could not understand him and asked him to write it down. He wrote that he left his keys in the car and does not want it stolen. I showed him his keys. He was obdurate and insisted he has to go. Dismayed, I followed him. He took the walker and tried to open the door, he did not know how to open it. I opened it for him. And tried to stall him, I told him he has only a T-shirt on and it is the coldest night of the year. He went back to the bedroom and put on a warm shirt and headed toward the door again. I sensed if I stopped him, he could get mean. If I let him do it, he might just turn around. I ran to grab a jacket. He walked out to the driveway and told me he had to walk to the end of the street. I managed to talk him into turning around and going back to bed. He let me helped him back into bed. He lay there face ashen, with that closed up uncommunicative look on his face, looking almost like angry but no, it is not angry. It is just a look like he is not there, it is a stranger there, or nobody there. I quickly gave him a vicodin and prayed he will sleep. Mercifully, he did sleep. I slept also and pray this will not happen again.

Last night, my hb slept a lot better. And as he promised, no more night wandering. This morning I woke up and found him sounding horrible. I hurried over and got him to move to the top of the bed so I could get him in more elevated sitting position. He told me something, I could not understand him. I got him pen and pad and his glasses. He wrote, “I want to breathe better.” I quickly put the bipap machine on him and he fell into a nice deep sleep. This is the first time he acknowledges having difficulty breathing. The nurse asked him every time about it and he always says he is breathing fine, no problem with breathing. When he wakes up, I will switch him from bipap to oxygen, that was what a nurse told me to do the last time he had asthma attack.

Putting oneself with Als

I do wonder how it will be if I am the one suffering from PALS. I will panic and then use my mind to calm down, thinking of people buried alive and who survive it using mind to control. I do believe when extreme situation happens, our minds teach us how to deal with the situation and give us the strength to endure.

When my entire body closes down, how would I feel? I would go inside myself.

I entered into myself after 4 years of intense meditation. It is like a door opening into one’s deeper self and one is inside. It is like gaining access to boundless space within oneself yet in a zone outside of oneself, high up, in an elevated high. Once in, it is easy to gain access to that inner world which is blissful, huge expanse of wide space, all white, light and beautiful. It is like entering into a world within oneself when one sees with inner eyes yet do not see anything…

Would that sustain me? I sure do hope so. The social worker asked me to show my PALS how to engage in meditation. I talk to him about it. I know he does meditate, the long hours laying in bed, too tired to do anything. And the long nights where he use to lay – unable to sleep and just thinking. It is only recently when dementia sets in that he becomes difficult when not sleeping. Until then, he would lay there the entire night, unable to sleep and never bother me one bit. If he has karma to burn, he is doing it, suffering patiently, with peace and some kind of joy, never complaining. I am grateful to God for that.

It is interesting with my PALS. He was awake yesterday. He would be awake days then sleep for days. Yesterday when he asked for the bipap to be removed. I removed it and in a merry voice remarked, “Now, was that not helpful?”

“Awful,” he responded? Helpful? – I asked not believing my ears. “Awful,” he stressed and added, “I hate it, chuck it.” He made a disparaging movement with his hand toward it. I do rush for it whenever I notice he is hard of breathing. He would accept it and use it for a while before tiring of it.

Yesterday needing a break, I checked hulu for new movies on dogs and found one, Hachi- a dog’s tale. At the last part I cried hard several times, crying with the movie. If I had known it is based on true stories like that, I would not have watched it. I find the ending sad, not as much moving as sad. It reminds me why I cannot get a dog again. I cry more now over movies with dogs than people. One day I was sure Cassie our collie shepherd I had to put down three years ago was in the room with my hd until I remember she is no longer around.

It was good the crying, like my floodgates released after days of not being able to cry even when I felt a need to. But I am not always tears of crying. I am most of the time smiles and laughing because that my personality and also it is a way to stay healthy mentally and physically, not forgetting to smile and laugh. I find Thich Nhat Hanh’s half smile most effective in relaxing the tense muscles of my face and insides.

My PALS told me just now, awaking from sleep that I am free and to stay free and enjoy what I am going to do. I told him it is Sunday, I am going nowhere and am around. A strange thing to say and out of the blue. Twice now, telling me I am free.

My hb is lots better today. It is such a puzzle with him. He would sleep for days almost round the clock, hallucinating, seeing things not there, suffering from delirium and dementia. After three days sleeping day and night, he would become awake, day and almost night also for another two days or three. When he is not able to sleep, the nurse told me to give him vicodin and he would sleep at 1 am or so. Sometimes the vicodin does not work. The nurse noticed the pattern also and has no explanation to offer for it. When he is well like this, it is like a respite, I relax and am happy again.

Wednesday and Thursday were hard. The pastor came to visit. My hd started saying he is cold. The pastor told him the room is very warm, not cold. My hd looked increasingly sick. When the pastor left, I took his temperature, 92. Low. He had it low before. I expressed concern to a nurse who told me it is fine, older people do get that way. His teeth started chattering. After a while he got better. I went in short while later to check on him and he was kicking sheet and blanket off. I felt his forehead, warm and took his temperature again, 98. Somehow the two do not match. I know he had temperature. I went to call hospice. The nurse had yet to respond and he was getting sicker. I went to call again and told them I would like a nurse to look at him and if they could send a nurse, any nurse. The receptionist put me through to the person in charge but she was out for lunch. I decided to wait for his nurse to call again. When she did not call, I placed another call and told the hospice I believe what he has is chills and from googling that he might have pneumonia. The nurse called. I told her I believe he has chills, he went from low temperature to high. She asked how high, I told her 98 though his body registers higher temperature than that. I took it twice, both times it registered 98. I asked her if it is pneumonia. She told me pneumonia do not happy just like that, it slowly builds up. She saw him on Monday and he could not be better. Because he has a tendency to get very sick and then very well again in fast turnaround, going from dying one day to going to the flea market the next day, the nurse decided with no temperature, there is no reason to come. But I want a nurse to come so badly. I told my hd – if he gets sicker, I will call and get him a nurse. And as his nurse predicted, he got better and his temperature left him. He was so well, that night he slept soundly till 4 am.

4 am he started coughing and gurgling again. I assured him I was not going for my walk. That I will stick around. An hour later he started getting cold and then he started shaking, this time it was more than teeth chattering, his entire body was shaking. I waited for him to get better. He stopped shaking, just when I thought – the nurse is right, he does get well on his own, he started throwing sheet and blanket off. I knew then the same pattern as the day before had started. His body felt hot. I tried to take his temperature. He could not keep the thermometer under his tongue. It finally occurred to me to put in between lower jaw and lip. It worked. 103.3. I could not believe it. I tried it twice more, same. I went to the phone and called the hospice. The receptionist told me she will inform his nurse right away. It was around 7.30 am. Since the cna started work at 6 am, I assumed from the way the receptionist responded she was already in.

I waited, nothing. By this time my hd was thrashing, unable to keep still. I went to the phone again and asked when the nurse was coming in. She told me 8 am and asked if I want to contact the on call nurse. I told her since it is minutes only, I will wait for his nurse.

8 am came and no call. I phoned again and told the receptionist I want the nurse to get the message immediately, that my hd looks very sick, this way she will come immediately. When she did not, I remember the last time he had fever, the on call nurse told me to give him two tylenol and his temperature dropped. I googled, two advil or an aleve. I gave him an aleve and his temperature dropped. Slowly he got well and looked normal again. However, when the nurse came, his temperature was still at 102. She put him on antibiotic and tylenol. His temperature dropped to normal and stays at normal after two tylenol.

He has his first bout with pneumonia and like his usual, recovers like overnight. Last night he told me he wants to go to flea market this morning. I told him he is sick and should rest. If he insists and is well enough, I will take him.

I realized from my hd recent sickness that not having children and with me and my hd being in relatively good health, I have little experience with sicknesses. Next time my hd gets chills and fever again, I would know what it is. His recent chills and fever was my first experience. What I do is google each time he gets sick to know what I should do.

I just read Joelc post and like the others, experienced it like a kick to the gut. Joelc – last person I would expect to talk about being gone in January. What does it mean? I wondered, no one could be so sure about being gone unless…. ohmigod… unless one ends it. It is sad. I cry for him, I cry for my hd, I cry for so many here, so many who are so young and with children. I cry for their carers.

When I first learn my hd has als, for over 6 months I live and breathe Als. Now there is some normalcy mainly because his progress is slow. He is still able to walk albeit slowly. Every time he worsen like losing most of his speech, I cry anew till that too becomes a new normalcy.

The pastor coming to visit asked me if I am angry. The question puzzled me, angry? I asked him why would I be angry? Sad, anxieties filled but not angry. Angry, no. No resentful or anything of the sort either.

I examined myself, I seldom cry for myself, because I have no reason to, I am more fortunate than some I read about. I have no financial worries as long as my PALS is alive. I have no children and my PALS is very sweet and peaceful, happy most days. It is a blessings. Anxieties yes, I do worry about what happens when he passes.

Yesterday I thought of what I wrote about taking care of my PALS with care and love and hardly any resentment or negative feelings like that. It came to me, what if I pat myself on the back this way and fall and experience all those negative feelings? That would be awful. It would be so much harder on me and my PALS if I resent having to take care of him etc. After a while it came to me, I do not have to worry. I am this way with him because I have entered into a place of peace. After an entire life of striving to be “holy” as in attaining to wholesomeness, I have arrived at deep inner peace. It is this peace which enables me to take care of my PALS in this manner, with love, care and peace of soul. I saw yesterday, it is a gift. One I must appreciate and thank God for. I told the pastor if I experienced anger or resentment, it would be so much harder on myself and my PALS, he agreed.

What a day yesterday was. It started Friday night. I woke up and saw my PALS trying to pull the catheter off his body. He was in his dementia mode. “You cannot pull that off,” I screamed in alarm, hurrying to stop him. I drove it home to him, he cannot pull that off. I checked, there were a little blood there. I showed him the blood and did not think more of the blood.

Saturday morning, his urine was orange red. I phoned the hospice to tell the nurse. The nurse told me his pneumonia medication would not cause the orange color and that it is fine.

He recovered from his pneumonia and actually asked me to drove him to a place to take pics of it. I did that. Sunday, he felt tired and was in bed most of the day. Sunday night, the entire night, every time I woke up which was very often, he was at the bathroom trying to pee. I tried to tell him – with catheter, his pee goes in there. It was only when his catheter stopped draining I realized he went to the bathroom to pee because he felt pressure there.

I tried to flush it, he cried out in pain. The nurse tried to flush the blockage out and same thing. Not only that, his penis started hurting. The nurse suggested I bring him to the urologist. I managed to get him in right away.

The nurse there tried to flush it also, same reaction, extreme pain. She went to talk to the doctor, came back and proceeded to remove the catheter. She pulled it out and out spurt blood, so much blood, I was horrified and thought he has to to to ER. The nurse calmly tried to push a catheter in. He was in agony, “take it out, take it out.” She did and called the doctor. The doctor came and told my PALS he is going to insert the catheter and not to worry. I held onto to him and told him it will be all right. He was rearing, body stiff with pain and fighting the procedure, out of his mind with pain. The doctor inserted it and he slowly calmed down. The doctor told me he tore the skin inside when he tried to remove the catheter. The doctor looked very concerned. I told him I will find ways to make it so he would not remove it at night. He does it in dementia mode which makes it all the harder.

Today some respite. He looks very well. That is how he is, he would look like death some days and following day he would look hale and healthy.

I went to bed early at 9 pm. feeling on edge most of the day. I fell asleep almost right away, woke up half an hour later and found my hd was sleeping also. It was 9.30 pm. I turned the TV off and went back to bed. I lay there and listened to his breathing. It is a wonder he was able to sleep at all. His chest was so noisy.

At 10 pm, I woke up to find him sitting up. I asked him where he was going, to the bathroom? He told me no, he has to go out. He has to take the car and bring something back. I remonstrated with him, to no avail. He took the walker and tried to go out of the bedroom then remember he had no shoes on and asked for his shoes. The door was locked, he unlocked it. I told him he cannot go without pants. He went back to the bed and asked for his pants. Sitting on the bed, he proceeded to put it on. I always help him with it. Last night I thought – make it hard for him, he might give up. He did not. He managed to put it on, and asked for his shoes again. I brought them out, again he managed to put them on by himself.

I tried to hold him back from going, at the same time trying to convince him – not to go. I told him it is 10 pm and we never go anywhere at night. He fought me, strength in his bony skinny frail frame, an obstinate look on his face. I knew there was no stopping him. He walked to the door unaided, without the walker. He usually takes the walker even when it is the few steps to the bathroom. He remembered his hat and where he had asked me to put his billfold and keys yesterday. He went to the door. I opened it for it, he felt the cold and signaled to me he needed his fleece shirt. I brought it to him. He walked out the door and looked at the driveway, no car there. The cold hit him. He stopped for a moment and came back in and with gestures asked me if the car is in the garage – and let me lead back to bed. Again the cold did the trick, stopped him in his tracks and let me help him get back to bed. It makes me wonder what will happen when it gets warmer. He hates cold.

I helped him get undressed, once in bed, he pulled on the catheter, he wanted it off him. I thought, oh no, not again. I talked to him, reminded him what happened the last time he tried to pull it out. That it cannot be pulled out. He made a motion with his fingers – that he need to cut it off. I told him he has to wait for the nurse. Finally desperate, I told him he always said I have a good head, I do and he has better listen to me, bad things will happen if he removes the catheter. Much to my relief, he let me hide it under his inner short and sheets and settle him under the blankets. I went back to bed praying he would sleep. He did and I did. I woke up and could not believe it was 4 am.

The last time he tried to go someplace was midnight of new year’s eve. I knew it would happen again and it did.

It does make me wonder how much my hd is able to do – pushed under that adrenaline, though he has always been able to put his pants on by himself. I always help him with it, since it is lots easier. But to walk to the front door unaided without the walker. It does show how much we can do pushed by adrenaline. It shows also what I have been most grateful for – that his is slow progression. He is able to use his hands though his fingers are clawed and do not work as well. He is always flexing them. What is worrisome is the way – there is no talking and no reasoning with him. I asked him this morning if he remember what he did last night. He has no recollection of it and cried when I recounted the events. He cries easily these days and especially during the feeding. It makes it a bit tricky, I learn how to avoid food coming back up by closing the tube off after I apply each syringe of liquid food.

Two nights now, my hd wanted to go out at night. Both nights I managed to talk him out of him and out of pulling his catheter out. The moment he gets into dementia mode, his enemy becomes the catheter. He wants to pull it out, when I told him it cannot be done, he wants to cut it.

I have decided if he does go outside like he did the first two times, it is all right, I will let him and follow behind him. He is also not able to go far in his condition. It is better and easier than trying to keep him back. When he is determined, nothing can stop him also. He is very frail but has enough strength to resist me.

I got ready to go for my morning exercise – walk and went into the bedroom to check on him. He looks sick, eyes staring and blur, unable to keep his mouth closed and moaning. I decided not to go. That is what I do these days, when he is all right, I go when he is sick, I do not go.

He went from 173 to 160, stayed at 160 when he was still able to eat though coughing a lot. Then to 148 on feeding tube, down to 145 and now at 138 pounds. And he is 5 feet 11 inches. The nurse is concerned. We decided to up his feeding and see what happens.

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What an afternoon. My hd kept going to the bathroom this morning. Since he is constipated, I thought he was trying to poo. Finally, this afternoon, I asked him if he felt a need to pass motion. He told me he needed to pee. Instantly, I knew his catheter is blocked again. I tried to flush it, it was blocked solid. I called the nurse who taught me how to do it. It was still blocked. She told me she could come only in one hour or two.

She came and tried to flush it, it was blocked and my hd was in pain. She suggested bringing him to the urologist. I knew what the urologist would say, that she should put a new one in. I suggested it, she went for it. She got it done and it did not drain. She suggested urgent care.

I hurried my hd to urgent care. By this time, he needed to pee badly. I got the wheelchair out, got him in and they do not do blocked catheter and told me to go to ER. I hurried him there. They took him in almost immediately. The male nurse told me the catheter is draining. I told him, “No, it is not draining.” He showed me the bag, it has drained a bit by this time, with around 50 ml in it. I knew what would happen if we go home, same nightmare. I remonstrated with him. I told him there is still a lot in my bd bladder and he still wants to pee badly. He left to get something to scanned the bladder and told me my hd has 450 ml inside. He told me it has to come out.

He got a new catheter ready and pulled out the one the nurse put in and told me, “No wonder it is not draining. It was not all the way in.”

I told him when she blew up the balloon, it hurt so badly, my hd did not let her do it properly. He told me it was not in the bladder but in the uretha hence it hurt badly. Instantly the catheter started draining out 500. He called the doctor – who said my hd can go home. He told me as soon as the nurse get the papers done, he can go. and him back in the wheelchair. We waited in the passage and waited and waited.

My hd slumped over in the wheelchair, looking very sick, so sick, he was out of it and sleeping. Every now and then he would moan. We waited and waited. I know how it is, unless I do some pushing, we would be there hours. I asked a woman there. She went to check and told me the nurse will be there soon. Nothing. I waited and waited, then went to look for the nurse and saw one who told me – I have to get the nurse who saw him to sign him off. I went to look for the male nurse and asked at the triage and the woman was not helpful. She told me it takes over an hour to get paperwork done and she is busy with new patients coming in.

I waited some more and look at my hd slumped over, looking so sick, unable to hold his head up. It suddenly got too much. I started crying silently, just sat there and cried silently. I controlled it. Finally I saw the same doctor walking by us three times. I approached him and told him we were still waiting for the nurse. I pointed to my hd slumped over in the wheelchair, head almost reaching his knees. I never minded waiting however long when my hd had a bed to sleep on. And often waited hours at er but to watch him slumped over that way was very painful.

He told me he will get the nurse and soon after the nurse came. Then we had to wait for the insurance handler. She told me someone will help us out. Because we used their wheelchair, I thought like the hospital, one of them had to wheel my hd out and again waited. But not for long. It was getting ridiculous. I approached the male nurse who was very helpful and got us out.

Now he is sleeping, looking very sick and I am drained.

I read about Stu and googled for his website. I have been feeling strong in days, and apart from that day at ER have not really cried in weeks. I read his website and started crying hard. I quickly exited. I find I do not cry for my PALS alone, I cry for all afflicted by ALS. It is like a tragedy I never knew existed. Once touched by it, it is like an open wound. I read about people with Als, watched videos an

End of January. Is he going to do it, I wondered. One day, searching in my mind what to tell him, I asked God for something, just something, anything I could tell him. It came. I find myself wanting to tell him, “If there is one little bit of you that does not want to do it, don’t do it.” I did not, I let it go, I had said a lot and enough. I find myself praying for him. The woman who came to help me with a voice machine told me were it her, she would choose to end her life. I thought the same myself when I first learned of it and later knew I could not do it. I would however ask not to be treated. I would want to go to the other side. Often I think, what if it is me and I ended up completely paralyzed? The very thought terrified me, prisoner of my own body, only the eyes flickering but at least there would be the eyes, communicating life. Eyes after all are mirror of the soul. I know I would go inside of myself and go deeper and deeper. There is a world inside of us. It is like a huge expanse of land inside of us and at the same time outside of us. Like a land above space, boundless, big expanse, all lightness and brightness. How do I know? In my darkness of moment when I had no choice but to go inside of me, I went inside and found that space. One gets into it – applying meditation, going deep into meditation and then that inner world open out to us. When we get in, we know we are in and once we are in, we are in. It is what Catholics would call the mystical realm where mystics enter into. But one does not have to be saint or mystics to enter in, one only need to still everything, still the mind of thoughts, everything and enter inside in meditation.

Warning, this is gross. It is strange the feeling of satisfaction one could get being carer and over something so gross. I have gotten very good at using the suction machine. Sometimes, the phlegm rattle inside his upper chest. When he coughs, I could hear the mucus being in his mouth. That is when I approach, tube of suction machine ready. The RT taught me to go deeper inside. Until then I dare not go that deep. Once in a while, I would get it, hard suction action, – the suction machine gripping a globe of mucus. My hd would fight because it is so uncomfortable. “Wait a bit, let me get it,” I would tell him, “this is jackpot.” In a way, it is. The moment I get hold of that globe of phlegm, the rattling in his chest ceases, he breathes easier and feels so much better.

The Journey

When I first learned my hd has Als, and after reading an article on it, I imagine his Als to progress as fast, that he would become completely paralyzed within months and die as fast. The horror of it gripped me, and to such an extent, for months, I lived, and breathed Als. There was no other life but Als. Most days, the darkness took me over completely. I cried and cried a lot and hard, in the solitude of the bathroom. After a few months, the thought came to me, I could sustain such intense mode for a few months, not for extended period of time. I am likely to break under it and I could not afford to break under it. By then, it occurred to me, his journey might end very fast and it might not. If it is going to be a long protracted journey, like a marathon, I have to reserve some strength for the long trip ahead. I could not expend it all on the first lap of this hard journey. I tried to loosen up a bit.

And now, a year later, he is still able to walk though slowly. His hands are weak, his legs stiff and slow but he is still able to walk and life settles into a form of new normalcy. For a fact, each Als case is different.

Isn’t it strange, I go on for weeks, strong and able to separate a part of me so I could cope with this and suddenly for no reason, I want to cry and allow myself to cry it out. The pastor marvelled at how I am able to handle myself and my stress. I have several means. I usually turn to meditation, if that does not work, I use the garden, if I still feel cooped up then I make a fast trip to the store. Yesterday I worked on cutting apples up to dry. I zero in on that, emptying my mind of all else as I worked on it and it did help.

Tears

Sometimes I wonder what is worse, crying or needing to cry and unable to cry. Today all of a sudden for no real reason, that need came to me and I could not cry it out. I knew how to cry. I went to read Stu’s Als Guardian Angels site. I read a few of those the Als Guardian Angels help and cried. Even then I could not read more than a few. I exited and then went to youtube to look up videos of those with AlS. It is like facing my fears of Als when I see someone completely paralyzed and dealing with it so bravely. It was like challenging myself to watch them and face it. They are so brave, people with Als. I drew inspiration looking at Stephen Hawkins. He got it at so young an age and lived as full a life as he is able to. It struck me – when he said that he did not enjoy life as much as when he found he has Als, it makes him appreciate life more. Today is a strange day. I do live like a hermit, this blog here is like that, silent, solitary, alone with myself. At the same time, it is sharing also and keeping like a diary of this harsh journey.

A few days ago, I woke up and was horrified to find my hd’s mouth red with blood. I was very alarm but decided it is his gum. It bleeds easily. I shot some spray for his saliva and when it disappears by itself at the end of the day, was very relief and decided it is his gum bleeding.

This morning I woke up at 1 am and again the same thing, blood in his mouth around the teeth area but a lot more, and it was fresh blood. I looked inside his mouth and did not see any blood. I used the suction machine and cleaned it out. And used a dent tip to clean what I was able to. And then he started coughing, mucus colored with blood flowed to the area at his teeth. I used the suction machine reaching into his throat and saw mucus with streak of blood being suck in. Blood is always unnerving. I lay there unable to sleep till 2 am.

I could not wait to tell the hospice nurse about it. She believes it is his gum and asked if he could see a dentist to have his teeth properly cleaned. I told her I saw blood in his mucus going into the suction machine tube. She did not believe me.

The doctor came to check on him, routine check. He told her my hd’s lungs are clear and he is doing a lot better than he had expected. Hence the dismissal of blood. I tried to tell him about it, he did not pay attention to it.

My hd is on antibiotic, it could account for the nurse not taking any action – since he is on antibiotic. I was right about the pneumonia a few weeks ago, I might be right again, the blood is not from his gum.

My hd told me last night he wants his legs to go to normal where he is able to walk and bring me to Hawaii, to show me Hawaii. He went on to say he will exercise them and the muscle will return. I tried to tell him they would not. He responded by saying, he will see the doctor and the doctor will restore his legs. It is so sad when he talks that way. Today, very gently, I explain to him with examples of others that his legs will not get better.

He showed me his lower lips the last two days. It used to be his upper lip, now it is his lower lip. Oh lord, his speech is going further. He talks with difficulty and I am able to understand him now and again. His speech is likely to go completely soon. His speech goes faster than his legs or arms.

It might be easier if he is aware what he has. He does not know what he has and does not want to know. I explain to him what he has and I know little enters his head. It has been that way the past few years. He would go in and see the doctor, came out and told me nothing is wrong. It would be later I found there was a lot wrong. After that, I make sure I go in with him and found he would talk about any and everything but his health condition. Sometimes it felt so unreal. The doctor and I would be discussing his condition seriously and he would go into his stories, about his writing, his painting. Or busy telling the doctor how handsome he is, anything but his health condition.

I have a sick feeling in the gut. I hate that feeling, mix of fear and dread.

It is most intriguing with my hd. He would sleep hours on end for a couple of days and the next couple of days do not sleep at all, sometimes not even at night.

He asked me yesterday if he will ever eat again. I told him no. It is so sad. I tried to tell him what he has, what Als is about. The problem is – he does not assimilate new things well recently even things concerning his health. I could tell him, explain to him what it is about and little enter his mind.

I miss Cassie, today I think if I have Cassie, I would be able to hold onto her for some comfort, rub my face against her fur and just hold her close. Over 3 years since I put her down and I miss her still, my little dog friend and child.

After days of uninterrupted sleep, last night was one of interrupted sleep. After reading what Missy goes through with interrupted sleep, I did not mind the interrupted sleep. I still have it lots easier. It actually makes me feel less guilty I have it lots easier, strange feeling. One of those unconscious not very rational feeling. Tiny form of survival guilt I guess.

At any rate, at 1 am I woke up. My hd told me he has not said goodbye. I asked him to who… I was thinking of his daughters. He responded, to his beloved. I laughed at that and told him it is “goodnight”, not goodbye. I told him good night but nonetheless, went to him for him to goodbye. He held my hands and told me he loves me. I went back to bed and an hour later saw he was still not sleeping and started to make noises. I asked him if he has difficulty breathing and suggested he used the bipap machine. He accepted it. I put it on. He signaled to me, he wants to use the nebulizer. I removed the bipap mask and gave him the nebulizer. Once that was finished, I put the bipap back on him. That was when he started making noises or “cries.” He went aaarrrh aaarhhh arh arh ah ah ah arrrh arrrrh arh arh ah ah ah arrrrhhh…. It went low then higher and higher in crescendo and urgency, low and then high again. He has never done that. I listened for a bit then got up to check on him and found him removing the bipap mask. I helped him put it away.

I had not given quetiapine because he was sleeping when I went to bed. I decided to give that to him with vicodin as the nurses at the hospice told me when he is not able to slee. I went back to bed and suddenly he fell asleep. Just like that. It was rather unusual. When he is awake that way, he usually stays awake, vicodin or not. He is still sleeping and it is around 6.30 am. It is so hard to tell about him, day to day, moment to moment.

All that, I still had a good night’s sleep. I am grateful at the way I am able to relax my mind and fall asleep easily.

been fairly happy and quite removed from the entire thing. On Friday he wanted to go out and reality hit. It is one thing his laying in bed fairly happy and at peace, getting up once in a while to go to his computer or den to read, albeit moving slowly, it is another getting him into the car. It was slow and laborious. It hit me again, he was so active, so full of life, now he could barely make it to the car. I have not cried in a while and felt like crying. It was sad suddenly remembering.

It could be due to that, today for no reason I felt down. Mid afternoon, I did not know what to do. I did not appear to achieve anything and there is so much to do. I sat down in meditation, holding my head in both hands, cradling it with both hands. It felt good and comforting that way. It makes me reflect how certain movements are the same for all people, cradling one’s head or doubling up in pain… I stayed in that mode, mind emptied, resting it and not thinking of anything but resting it in God. Half an hour later, I felt lots better. It is the third time I experienced such marked healing properties of meditation. The other two times I experience white ness, a kind of healing white brightness, this was dark and quiet but nonetheless healing. Now I am at peace. It is a good feeling. I handle myself gently, not wanting to lose this peace and inner calm.

Yesterday I went to have the pressure in my eyes checked. The eye specialist saw a hole in my retina. Mercifully, she did not see fluid behind it. I will be seeing a retina specialist next week. If it requires treatment, it would be laser treatment. I felt kicked in the gut and felt like crying. It was this added to everything else. I walked in a zombie state much of the afternoon, my insides hurting and aching and then I snapped from it.

After Als, nothing frightens as much, maybe throat or tongue cancer but nothing comes close to Als. I told myself it is little, minor, only something to see to and continue on, even watching My dog Flip last night. I find movies with dogs and children good therapy.

I have not written in a while. Things appear to be plateauing and I started to regain weight I lost. When I am tense, I can lost pounds overnight. When I am happy, I regain my weight, when I am depress, I put on weight, no matter how much I control the calories intake. It is like there is a signal to my brain controlling my body weight. Tense and stressed and my brain tells my body to lose weight. Depressed, it tells it to gain weight.

Two Mondays ago, my PALS woke up, with little voice. He lose what little speech he had left. That started further downward spiral of voice and with it the dribbling.

A week ago, he started having problem with breathing. I wake up at night and find him unable to breathe properly. Fortunately I do wake up several times a night. I told him to wake me up when he has difficulty breathing. He does not.

Last night was particularly bad, I woke up and found him gasping for breath. It was scary. I got him the bipap, he used it but removed it almost right away. I put him on nebulizer then bipap and it got better. I tried to get him to use the oxygen, he refused. I went back to bed, fell asleep and woke up to find his breathing back to his new normal. His breathing is particularly bad at night.

So begins a new phase, he was suffering but not as much before. With the new problem with breathing, he is suffering a lot more.

For months his condition stabilized. He was able to walk though slowly. He got me to bring him to the flea market and enjoyed just being pushed around flea market in his wheelchair. He wants to live, he told me, and that was his way of living. The nurse told me he was getting better and she would cut her visit to once a week.

Two weeks before he passed away, the first Monday I noticed his voice was gone. Until then he could talk with difficulty, but still had some voice to talk. He fingered his lips and told me they do not work. It was so painful watching him. I cried, knowing his condition had moved into another state – worse state.

A week later, he would wake up unable to breathe properly. I quickly give him the nebulizer, he loved that. Like a kid, he loved watching the white fume coming out, spraying it in all directions. I would tease him about it, that he enjoyed watching the smoke more than the benefit of the nebulizer. After the nebulizer, I would get him to use the bipap. He hated the bipap and would only use it manually holding it against his face. Only when he was very sick and out of it would I able to put it on him and he slept with it. For three days, that calmed him down and he would be all right the rest of the day. It worsen after that, and the last two days every breath took an effort.

I should have realized something was wrong that night he wanted to turn the TV off and slept at 8 pm. I noticed his breathing was very hard, I told him, the bipap would keep him alive and strapped it on. He removed it. I told him I could leave the top strap on and he manipulate the bottom part. It was the only way I could get him to use it. He declined. I got him the oxygen, he pushed it away. All through the day and night, every time he coughed, I hurried over to do the suctioning. I told him, “The mucus has been rattling in your chest for two days now. You have to get it out.” He usually did every day. Several times I could hear it, right at the end of his mouth or so I thought. I pushed the suctioning tube in as far as I was able to and nothing. It was right there, I could hear it and could not get at it. It was so frustrating. He was able to cough and the RT the hospice called did not think he needed the cough assist machine. The entire day also, he was not cooperative, he kept his teeth shut so I could not push it in.

Several times that night he woke up, each time I woke up just as he was trying to get off the bed. I helped him to the bathroom and back.

11 pm I woke up and again he wanted to go to the bathroom. I helped him there and back. I settled him to bed and went to my bed and tried to sleep. After a while, I looked over and saw he was sleeping. “Good,” I thought, “at least he is not suffering, deep in sleep.” I fell asleep. I woke up at 1 am and as usual turned to look at him and he was quiet. Too quiet. I feared the worst. I felt his hand. It was cool but not cold. My hands were colder. Unable to guage it that way, I put my finger under his nostrils, no breath. And that was how he went – in his sleep.

He appeared to know he was going to die that night. The Sunday before, he made several phone calls. Monday, I called hospice and asked for the nurse to come Monday instead of Tuesday because he looked to me very sick. The nurse came. Tuesday, she was not intending to come. I phoned her and she came again. She told me it was when she would recommend inpatient care but she knew my husband, he would not go. We asked him, he refused to go. Wednesday she came of her own accord and on leaving told him she will see him the following day. My hubby tried to tell me something, I could sense it was very urgent. I asked him if he wanted to write it down. He nodded his head. I took a pen and pad and told him, “You do not have to write in full sentences, just a word or two or few words.” He would get very tired writing. He wrote. I read it, “The last time I saw her.” What was he trying to say? I wondered. I told him he saw her 3 weeks ago. It was a nurse who replaced our regular nurse who was on a week’s leave. When he passed away, I understood what he was saying. He knew Wednesday was the last day he would see her. He knew he would not make it through the night. I did not.

He came close to death so many times and bounce back, I did not know. I had knelt at his bedside, listened to him when he was able to talk. When he was not able to, I sang Abide with me and then recite Hail Marys and find it so soothing. But the night he passed away, I had no clue he would pass on.

At the same time it was the best way to go, in his sleep. My concern was if he suffered. The nurses assured me he did not. If he had, I would know. They are right. I am a very light sleeper, one slight creak of the bed and I wake up. That night I woke up 3 times without any sounds from him. Had he suffered and made any movement I would have known. He went in his sleep.

Two things haunt me. If I write it down, it might not haunt me as much. The first was when my husband asked me to drive him to visit his friend, 5 days before he passed away. He was all right until we were leaving and started having a lot of mucus. Once there, he sat, head dropping to his chest, his neck unable to hold him up. He sat, head dropping, swallowing and swallowing, unable to say a word. I kept looking at him. It was so painful looking at him. He used to talk so much, no one could get a word in and that day he was not able to say a word. When foamy saliva started, I asked him if he wanted to go back. He nodded and I drove him back. I am crying hard as I write. That image haunts me.

The second is his daughters. Every ounce of energy he had, every time he was able to muster strength to go to his computer, he wrote to his daughters and nothing. He left phone messages till he had no voice to do it and I did it for him and nothing. The moment he died, one came to visit, and they wrote. They like me better than their father. It was bitter sweet. He would have so loved their visit, why now, why not when he was alive. That hurts so much. He hurt so much, he was so sad and I hurt and ache for him but there was nothing I could do. I wrote for him also and phone and nothing.

These two, they come to my mind and I find myself crying hard.

He went in his sleep, it was merciful but I did not get to say goodbye. I did several times in the months prior when I thought he was dying. One time he held my hand, kissed it gently and told me he loved me. That night, he wanted to say something but I could not understand a single word. I asked him to write it down, he declined. I know it is more merciful but I did not get to say goodbye. That is so hard. And so I talk to him every day and that helps.

I am surprise how strong I am. For months I was terrified of living alone, sleeping alone, living as a single woman. I suffered states of anxieties due to it. When it actually happen, it was not so bad. I am living alone and find essentially I had been alone most of the time when my husband was sick. I had hospice help but that was about it. I took care of everything myself. I had also been handling everything myself the last few years. It is quiet and empty without my hubby but the birds are chirping and life goes on.

someone said it well that we begin grieving from the time we learned the news. i had months of crying, preparing myself for my husband’s passing and when it happened, i know one is never ready for any passing. i hurt so much and deal with it by talking to him. what hurts most is how much he suffered before he passed away. als is a horrible disease.

I began my caregiver cna course as a result of caring for my husband. It came so natural to me, caring for him that one day it hit me, I can do this. I am with great people at the course. But now and again I would space out, remembering some things from his sickness.

The hardest thing is remembering how he suffered. Yesterday it hit me again, I went to the bathroom and cried it out, wiped my eyes dry and nobody could tell. One benefit for me, I could cry hard, wipe my eyes dry and apart from a little redness, no one could tell.

I do so hate Als, it leaves its mark and whoever it touches, never remain the same again.

One day when my wounds is not so fresh, I might be able to get involved with PALS. Not now. I read stories on PALS and I cry. Most of the time I keep my emotions under. It still surfaces now and again. It is the only way to cope. Compartmentalizing.

4 months to the day my husband passed away. i see him still – his last days in this room, looking so sick. I came across pics of him in that condition recently and it haunted me for days. The pics reminded me of his last months on earth and he looked so sick in them.

Last week, i found I finally let him go. As much as I wrote about moving on and letting go, it was hard. I found myself often still wanting to cry, or feel like crying.

I am sad but found I have let him go. Memories still surface and hurt but I just sense I finally am able to let him go.

I did my second week clinical, part of my cna course and was feeding a patient who is completely paralyzed and felt moved to tears. I cannot describe the feeling, I just knew while feeding her, I was moved to tears.

Just now I read a post and responded to it and found myself crying hard. There is something about Als which is painful and heartbreaking beyond words. I ask myself what it is. It is the gradual paralysis and utter lack of hope. With other terminal diseases, even a deadly one like pancreatic cancer, one could hope one could fight against all odds and some do. With Als, there is no hope. It is cruel and relentless.

some things and saw a note book where my husband wrote a few lines when he was no longer able to speak. One said, “I want to breathe better.” Another made little sense, “Get them out of here.” And “I left the keys in the car, I do not want it stolen.” He had not driven in months and was delusional. The last line he wrote was, “The last time I saw her…” referring to the nurse when she told him she will see him the following day. At the time it made no sense. He passed away that night and then it made sense. I found myself crying hard. It was a cruel death.