Sad News for the Wearyempath and Especially for Michael

Well so much for my last blog – the one where I fully indulged in my own “navel gazing” as my father used to put it. You remember, the blog where I  lamented my kidneys and their status and it’s implication on the rest of my life. Well all that is simply put small potatoes compared to what my significant other has been through and is still going through.

On May 1, 2014 Michael had a stroke and everything after that has been pretty much mal practice. Currently he is in what would be described as a “vegetative state”. It has been five and a half months and many miles traveled by him and by me, three different facilities a “mercy” flight and lots of parking fees and cups of Tim Horton’s.

My world view, which was never really rosy when it comes to the medical community even though I work in the medical field, has gone from thinking that somehow one facility or one nurse or doctor or social worker could be better than others to knowing that everyone is human and makes mistakes and sometimes even if you are right on top of things the clinical cascade is too strong for you to hold up against.

Michael’s biggest challenge has been getting off the ventilator which he is been on again since July 17, 2014. The brain damage caused from loss of his air way is pending but hope for something different is ever present, but we know the stroke damage will now never heal. He is minimally responsive at times and at others cannot find his way to respond. It’s like his mind and body are in the bottom of a deep pool that’s all murky and sometimes he floats to the top just long enough to connect and then goes back to the bottom just as fast.

He has two friends who visit him weekly and other than that everyone who was close to him seems to be too busy. I visit him daily. I have missed only one day in five and a half months and that was when I caught a head cold from one of my nurse co workers in the middle of June and I have the voice mail recording of Michael telling me to stay home – because if I get sick all hope for him to return home is lost. That was when he was in acute rehab at a local hospital.

I’m not even sure what my first mistake was with all of this but perhaps it was being pompous enough to believe that people knew what they were doing and that I would recognize it when they were not. I was wrong, even if you are one of them you probably won’t be able to fight against their steam rolling.

So many points in time during this seem exactly what followed before, hopes heightened and then lost.  A common example of this was when Michael was in the ILCU,  I was told by the social worker for the unit that they were no longer trialing him off the ventilator because he de- saturates on a Monday. However when I went to visit on Tuesday he had been off the ventilator for 10 hours, the next day 7, the next day 8 and then two days in a row 12 hours off. He was holding at 97% oxygen with no assist. He was tired and less responsive but HE WAS BREATHING ON HIS OWN.

So, the respiratory therapist told me, “this is progress”, and “it takes a long time sometimes after anoxia but sometimes the brain kicks “on” and it’s easier. The social worker said last week that because of the brain damage he won’t breath on his own again and a ventilator home is the best place for him. Do you see where I am in all of this? Who do you believe?

I was ready to put Michael on “comfort” care that week because of her and then he was breathing  on his own for half the day – what the hell???

Then of course the other shoe fell. The respiratory therapist on that last day decided to see if he could tolerate being off for longer and supposedly they monitored his saturation rates and he did just great until  -he didn’t- and coded. He turned blue and they had to “bag him” and when I went to see him on that Sunday he looked like he had been shot out of  a circus cannon. They scared him. The likelihood that he will ever be off a ventilator is now —– zip. Thus it has been for Michael and thus it has been for me. And so it continues to be.

Writing has been a bit difficult, mostly because I am trying to work and visit and still be home for my overly needy cats. I started writing a journal but after a month I was exhausted by it, it took up too much time, which I needed to drive. I bought a hand held recorder but generally, I’m so foggy from all of this I’m not sure anything would be coherent. I’ve been reinventing everything and nothing seems to work out exactly as I had planned. I need to be more focused so…..

Better to do a time line:

May 1, 2014  – Michael had a cerebellar artery stroke, with total left sided droup and loss of ability to swallow at home and was transported up to “the stroke center – where they took a CT and a MRI and said, “he didn’t have a stroke”. Then they said that he had diabetic keyto acidosis and the doctor against the protests of the nurse gave him three 1, 000 ml of IV fluids and then insulin and gave him pills to take, which he then aspirated on because “hello” he had a stroke and couldn’t swallow. He got to the “stroke center” by 230 and by 1 am on Mary 2 he was on a ventilator.

May 2, 2014 Michael told by the neurologist that he did indeed have a stroke but it was in a tiny little place in the base of his brain and the person who gets paid to look at diagnostic tests “on second evaluation” found it.

May 8, 2014- Michael off the ventilator for a day,  but the nurse in the MICU gave him ice chips without a swallow evaluation so he aspirated again and went back on the ventiltor and this time when they re-scoped him and ventilated him they gave him Klepsiella bacteria, which they spend the next ten days trying to identify and by that time his heart was weakened by the Haldol they were giving to sedate him.

May 19, 2014 – Michael pulls out the ventilator for the third time and they decide that he is doing well enough to be left off of it. Michael heads to the 16^th floor.

May 19, 2014 – Michael begins to be able to suction himself because the swallow evaluation shows that he is not able to swallow.

May 25 through May 31. Michael has a feeding tube placed and a pacemaker and physical therapy has actually gotten him to stand up 6 times.

June 4, 2014. Michael transfers to a Orleans county hospital acute rehabilitation unit where he promptly aspirates again and is put on vancomycn for three weeks.

July 4, 2014. They try to take the urinary catheter out so they trial Michael for the day but his bladder is lazy an they have to re catherize him – which lead to a urinary tract infection about 5 days later.

July 14, 2014. Despite two antibiotics Michael is getting sicker, a high fever, confused.

July 15, 2014. They finally take blood cultures and find that he is septic, but from what they do not know. The nurse who was pouring his evening feed was in a hurry so she fed him too fast and laying too far back and when he couldn’t suction himself – suctioned him and gagged him causing him to vomit and aspirate again.

July 16, 2014. Michael is out of rehab unit and into the intensive care in the Orleans county hospital  where he is ventilated again. They tracked the source of the MRSA to the central line they had put in on the 7^th of june that they had never bothered to take out.

July 17, 2014. Michael is still on vent, but his temperature went from 104 to 102 to normal and he was responding to antibiotic.

July 18, 2014. Michael’s aspiration pneumonia finally surfaced and the doctor in the intensive care unit lost his airway and Michael had a heart attack and lost oxygen to the brain – they don’t know how long as no one was keeping track but he was at 30% oxygen for more than 5 minutes. They Mercy flight him to the hospital with the “stroke center”, where he is back in the MICU in Buffalo – this time he is totally unresponsive.

July 26, 2014. I meet with the MICU “doctors” and interns who proceed to tell me that they have taken an EEG and that Michael has acute diffuse encephalopathy and that he probably has an infected pacemaker which will have to be taken out. They intimated to me that they knew what Michael wanted for his life and I informed them that I know what Michael wants and that is for me to be comfortable with any decision I make and turning off the ventilator is not one that I am going to do. I signed a DNR for further heart or pulmonary problems but did not take restrictions off regarding testing that might need to be done or treatments. I asked if the damage was permanent or transient and they said that they could not be certain. I said let me know when that is and ordered a trach for his comfort and noted that if the pacemaker has to come out he will be getting a new one.

July 31, 2014.  Michael was transferred to the ILCU, which is a step down unit from intensive care in the same hospital, he has medically stabilized and is in a persistent vegetative state – or so I’m told. He is getting IV Vancomycin  and will for another two weeks. His pacemaker did not get infected so that is not a problem. He stays on the ventilator unit through august and September.

September 30, 2014. I put Michael on comfort care after his 58^th birthday after several unsuccessful attempts to wean him from the ventilator.

October 10, 2014. Michael is transferred to a nursing home ventilator unit in Buffalo which is where he is currently.

I haven’t heard Michael’s voice since July 17^th and I miss him even though I see him every day. I know that then next infection will take him and he desaturates very quickly because of the build up of mucous. Apparently the kind of stroke he had messes with his sinus and he has excessive drainage – of course another complication.

I want to say that I have great friends and one in particular Carol who keeps me balanced and centered as much as possible and some other friends who keep me distracted from self harm – or as much self harm as possible. My whole life is in limbo because Michael’s life is so fragile right now.

I was on call today for work and the nurse of course called me to come and meet with a family. I was almost all the way to see Michael in Buffalo. So when I asked if I could meet with them later in the afternoon and explained where I was and they agreed she said. “Well have a nice visit, “ in a cold and sarcastic voice.

I could not help myself  any longer and said, “ Wow really? Have a nice visit, oh my how utterly nice my visits are with Michael on a ventilator de saturating to the 80% oxygen level because of mucous plugs that he can’t clear. How wonderful our visits are when I’m not sure he recognized me other than I am that lady the messes with him and fusses around him. Oh yes we surely will have a wonderfully nice visit while I have to witness snotty aides toss him around like he’s a sack of meat and nurses that hook his feeding tube up to the inflation port of his urinary catheter and then when they realize what they have done try to put it back into the peg tub without cleansing it. A super visit where every time I hear a worker sneeze or cough I wonder if he’s giving that to Michael and if this will be his last week on earth. Thanks for thinking of me.”

To that she replied, “Oh Cheryl, I’m so sorry, I guess I didn’t realized, you manage to keep things all together at work, I just thought that things were improving. You visit every day? Oh, I guess I didn’t understand.”

This sums up my existence now. Sometimes I just can’t manage to be nice. I jokingly say to people that I think that I have figured out what God’s purpose in this is and of course some are quick to point out the flaw in thinking that I really know what on God’s mind, but I’m guessing here when I say to teach me to be patient with people who don’t think about what they say or how anyone else besides them feels – just saying and I am failing at it miserably. I seem to be getting worse not better.

Of course the hour that it takes me to get to the nursing home and the hour back home at the end of the day. Some really big mistakes that are flying in my face right now too but I still go on. I’m sitting with Gordon cat, Michael’s painting partner on the couch in a basement that is full of boxes and unfinished painting. It’s gone from the promise of spring and the warmth of summer to the threat of winter.  Gordon misses Michael the most of all the cats, he came with him when he moved here and has been the basement cat because he bites the other kitties and I cannot afford a vet bill. But he likes his new circumstances, having a couch to lay on and a brand new blanket to hump. I sit with Gordon for an hour or so everynight because he is very lonely, most times I fall asleep down here, before I got the couch I would fall asleep in a camp chair and wake up drooling with my body twisted. Now I’m more comfortable now too, thanks to my friend carol’s granddaughter.

I’m going to start blogging again. It’s one of the many things I miss. I miss Michael though the most. I have to be the grown up now and do all the things that Michael took care of, the dishes, the cat litter, the garbage, the gutters, pick up the lawn, laundry, dust, vacuum in short I have to take care of myself. I am painfully aware that I am singular now except that I sit with him every day and hold his hand and pray for either God to give him wings or a place to put his feet. I miss it that he put a new bar of my soap in the dish when he saw mine was getting small. I miss the hugs in the morning before I went to work. I miss the fights and the making up and I miss the sound of his beautiful deep voice.  I miss his making a fire in the fire pit for me to come home to and calling him “sparky”. I can’t bring myself to use the last garbage can of kindling he gathered before the stroke. I miss his lengthy messages on my cell phone, so long that I would forget that I wasn’t talking to him and that it was a message.

I got rid of the van- took it off the road and had it towed to the junk. No more art shows for Michael and I. No more beautiful sunsets for Michael to paint. It physically pains me to know that his swollen hands will never produce such beauty again.  And no, it doesn’t give me comfort to know that people loved his work, not yet – sorry – I’m not that evolved. Generally I compartmentalize well and sometimes displacement works for a while. I know it’s not that evolved a defense mechanism but I guess I’m just not there yet.

Sometimes I cry all the way home or all the way to the nursing home. I worry constantly that my good friend Carol is going to die from listening to my sadness and not being able to help. I have a Michael size hole in my heart and it will never be filled again. I avoid talking to people mostly because there is nothing I can say that they will ever understand. If they have had the loss of their spouse it was sudden and unexpected. I watch him slip away from me every day and on the days that he is more alert I’m more sad because I think he knows how his life has turned.

I used to know how my caregivers felt to lose their parents but now I know how they feel to lose their spouse, the person they were spending the rest of their lives with. I can’t tell them where I am in this, I can only validate their experience. It puts me in a very strange place. So much grief and sadness. When people say, “have a nice day” I cringe. I don’t expect that to happen any time soon or anyone to truly understand how I feel about it. The pain I have is a sadness that sits in the back of my heart, it is all at once a hole and a ball at the same time, there and not there.  It’s fear, anger, sadness, rage, pity, love and need all wrapped up in a neat bow. The only problem is when I go to show it to someone it’s indescribable and unfathomable because they have not endured it.

I only know that whatever happens I will abide. I have always and will always abide. I will go through this, not around it and I will limp a little but I will still walk on – alone again. I’m not sure how much peace I will find but if it’s God’s plan then it will, if it isn’t, then it won’t.

So here is  challenge for you from the wearyempath: tell someone you know how much you value them. Go out of your way to acknowledge their gifts to the universe and to you. Pray for Michael that he is delivered from this locked in life and for me that I might continue to find strength and love and maybe even some peace.

Thanks from the Wearyempath – I hope you have peace as well.