No one knows the extent of my strength but me. No one knows the depth of my weaknesses but me. And when they collide, the world stops and hitches in my heart. Just such a collision occurred yesterday. While Mander and I visited my Dad, he cried. Pretty much for the entire visit. When I was a young mother I thought the worse thing in the world was when my child cried and I was unable to console them and unable to pinpoint the exact reason for the tears. I have found the rival to that feeling of helplessness.
To summarize where we are and how we got here:
Late summer, after a day of working in his shop, my Dad woke on a Sunday and felt kind of bad. After insisting he get it checked out, he went to the VA where they diagnosed him with pneumonia and sent him home with antibiotics. Two weeks later, still bad, more antibiotics. Then a call came to me from my son, late in the night, telling me he was scared. Dad was not breathing well, could not go to bed and was sitting up at the table. I had just moved in with my (then) boyfriend over two hours away. I made my way to FayCo to find Dad in such a state that it disturbed me. He was laboring to breathe, I begged to call 911 but he refused. It was difficult to get him into the car and was made to stop half way to the hospital so he could get sick in the bathroom of a gas station at Glen Jean. At the VA, he was diagnosed with congestive heart failure. For more than the next three months the dominoes fell one after the other. He was subsequently diagnosed with: COPD, Hyponatremia, LAD blockage – had a heart cath and was finally scheduled for open heart surgery at Hunter McGuire Hospital in Richmond, Virginia. (Let me pause here and say that I summarized this part because I plan to blog about the far less than adequate treatment at the Beckley VA, the crazy outburst I suffered through because Salem VA gave him Ambien and the lack of patient-doctor connection experienced at Richmond – to say the least, I am NOT a fan of the treatment he received overall by the Veteran’s Hospitals).
On December 4th my Dad had open heart surgery, a vessel harvest was performed on his left leg to use those vessels in the bypass. December 5th my sister and I sat there, waiting for a sign from him that he was coming out from under the meds. No sign was ever seen on that day, or the next, or the next. The morning of December 9th I had a voicemail pop up on my phone, for some reason the phone did not ring. I still have the voicemail. It alerted us to the fact that Dad had suffered from a cardiac arrest but that he was back on the vent. They still could not get him to “come aware”. After days of waiting, he opened his eyes and I said I love you and he said it back. I cried. Tears of relief. Things were going to get better now. Only, they didn’t. At all. My sister had to head home and back to work and I stayed on at Richmond, trying to get him healed up. In total, I was at Richmond from Dec 3rd through Dec 28th. I stayed in the Hospital Hospitality House (another blog coming about the wonderful resources available and the amazing people I met there). During that time my Dad was confused, combative and “not right”. But the cogs of the military hospital are unstoppable. I asked if Dad would be moved downstairs to the nursing home for his cardiac rehab. I was ceremoniously told no, no room. Not available at home (in Beckley) either. I was forced (with VERY LITTLE help) to research nursing homes from afar. The ones that would have worked best in the FayCo area were either not set up for the rehab needed or were full (the babyboomers have surged and filled up a lot of nursing homes – primarily males – and this leaves a gap in needed services that is not spoken of in healthcare – also another blog on the horizon). I settled for a nursing home in Huntington, it would allow me live at home, still close enough for FayCo friends and family to visit and was only a few blocks from Mander (who goes to college in H’ton). I asked about transportation for my Dad and was told that the VA was not responsible nor would they assist in transportation for Dad. Wow. Ok. We can do this. So, they gave Dad pain meds and in his not-clear state, almost unable to speak, muffled voice – off we went. In my car. No meds provided (um, he is diabetic and the hospital didn’t even give me insulin for the trip). Eight hours later we arrived at Huntington Health and Rehab.
That was 10PM at night (and FYI, we were charged for an entire day that day but hey, we are made of money, aren’t we? – yep, you guessed it – a blog on the cost of eldercare/nursing home and the care there will follow). My Dad has been housed at HHR since Dec 28th. The first night we were forced to deal with his new roommate who exposed himself to me and my daughter, he screamed all the time. After complaining, Dad was moved to a new room with the dream roommate Bob. In the first week, Dad fell, he became more confused. He was unable to use the urinal because of confusion and his injured shoulder. To get a CNA to clean up the urine was damn near impossible. I cleaned it. Those issues are secondary and will be covered under another blog.
So a month into his care at HHR his doctor tells us he believes the confusion will never clear, that something had to have happened during the surgery or just after and it caused hypoxia (loss of oxygen to the brain). I fought the VA to get his records and yes, the cardiac arrest my Dad experienced: he had respiratory issues, cardiac arrest was called and after like fifty minutes they finally got him back on the vent. So for like an hour there is a possibility he was without (or under the needed levels of) oxygen. Why did they not put a trachea tube in?!?! (a question that will haunt me for the rest of my life). Because of his lack of oxygen for an extended period of time and because of his disintegrating level of health – he has been diagnosed with Hypoxia (brain damage in effect). I have been told he will only get worse. I have also been told that his muffled speech is probably due to the hour of revent attempts he went through – they probably damaged his throat/trachea.
I am now working to get him into a nursing home that is close to me. People ask why not FayCo? My answer – I currently drive over an hour in each direction to sit with my Dad every day. The only days I have missed is when I caught the flu (one day), got married (four days) and the two times his lady friend and sister came to visit. So I visit him every day to give him a familiar face, to give him consistency and to make sure that he is not alone while he is so confused. If I moved him to FayCo, I am sure he would have some people visit at first. Sure family would come ever so often. But, when the weather gets warm and people want to be outside and when it becomes less convenient to visit him and the novelty has worn off – would he still have visits every day? I think not. However, if I have him here I can visit in the morning, take care of my daily business, and some evenings get a second visit in.
Currently he has someone feed him, he is unable to go to the bathroom without assistance (a diaper for #1) and is barely able to stand on his own. He requires assistance to get into and out of bed. He lives in every minute in history but not the present. We have had conversations about: he got laid off today (from Fairchild that closed over three decades ago), I need to pick up milk for Grandma Ocie (who died in the 80s) and the worse part of it – he believes my Ma is still alive and that she left him because he had an affair with his lady friend (Ma died Jan 2010 and Jackie did not enter the picture until over a year later). He weeps at the loss of family pets (who have died decades ago). He rages that he has lost everything (though his home and shop are still intact – for now).
I am protective, refuse to be scrutinized and holding out for a miracle. I am his pitbull. Always have been, always will be to the end.
Yesterday he came to the realization that his health choices brought him here. He wept. Uncontrollably wept. And I wept with him. He kept saying “this is my fault, this is my fault, this is my fault”. No amount of consoling or reassurance were enough.
That is where we are today – not where we want to be and not knowing what is to come next.
If you are a friend of Dad’s, please pass this along to his other friends. I try to keep people updated and I receive calls all of the time. But, I would love it if you could let others know where he is, how he is doing. We are hanging in there. Hoping for the best and bracing for the worse.
As I sit here and cry and rage with you, my heart breaks for you and your family. I wish I could say I don’t understand what you are going through, but I do understand and I have lived through it, though scarred deeply. My experience with my Mom wasn’t the same, but close enough to drive it all home and make me realize that the wounds are still fresh and tender. I keep you and your Dad in my prayers and you are in my thoughts often. The end of life is so bittersweet and I applaud you for being your Dad’s daughter, companion and Pitbull. I send you my love and hugs. Kathie
Thanks Kathie. It is a rough road to see someone you love so much suffering and there is nothing you can do about it. I received some great news today though. I will blog about it tomorrow though…. Hope you are doing well!! Love to you.