A lot of what you see now about Hurricane Katrina is a lot of before and after images. While some of them are quite sad – as in areas where homes and lives where swept away and not rebuilt – there are many that show how live and areas were rebuilt and are on the mend if not thriving. When I think back to that time with my father I think about how terrified I was that he probably wasn’t going to recover and that the only surviving parent I had who still knew who I was and could talk to me was going to die. You see, mom, who wouldn’t pass for another five years, had Alzheimer’s but had long ago forgotten who I was as well as lost her ability to speak coherently. For whatever reason, it was important to me and in some ways gave me the strength to carry on being a caregiver to have at least one of them who I could still talk to and relate to as a parent more than as someone I took care of.
I had the option of removing him from life support within a couple of days but I wasn’t ready to do that. That has got to be one of the hardest decisions in the world for anyone to have to make and as I was neither willing nor ready to make it, I asked them what my options were. I was told he could remain on the ventilator for up to 7 days and then he’d have to come off it or they would have to insert it via an incision in his neck. Just make my damn day happy with options why don’t you!!! So I opted to keep him on the ventilator for as long as they’d let me and then I’d decide one way or the other.
Every day I would get up, eat a little bit of something and then head off to the hospital to be with my father in the ICU. After a while I basically tuned out the news of the hurricane and turned it to where it needed to be – with my dad. I spoke to him, I brushed his hair, I prayed, I took notice of all of the machines around him and learned what they were, what they did, and what the various numbers meant. I also had to get in the faces of a couple of staff doctors who, in my opinion, felt that as he was a dying man (me screaming you don’t know that for sure inside) they didn’t need to spend time monitoring him or speaking with me. I still get a satisfying smirk on my face when I think about that one doctor who basically came in the room, barely said hello, read some numbers and then went to another computer to log in some things. I walked right up behind him and stood there until he explained what was going on. I was not going to budge until I got my questions answered.
Sometimes other family members would stop by but they never stayed as long as I did. A friend from church came one time and prayed with me over dad and then asked if I wanted anything from the cafeteria. She brought me back just what I wanted – the red jello with a ton of whipped cream on the top. That was some good jello and I needed it. Eventually they asked if I wanted to see anyone from the hospital’s social service department and I said yes. It was a good thing I did too because that wonderfully kind woman helped steer me out of the fog I was in and helped me to focus on what I needed to do. You see, when you become a caregiver eventually you will have to do the “heavy” legal stuff of power of attorney, health care directives and things like that. They can be depressing to think about and a chore to get depending on if you have ready access to those who can help you create the documents but they are very very important.
But they also have certain limitations and I learned that from the social worker. As caregiver to mom and dad I had duplicate legal papers for both of them with me being the primary responsible party and my sister being secondary if I were unavailable or unable. The power of attorney papers made it where I could sign everything necessary for their care as well as handle their finances. As dad was in a vets home and mom in a nursing home on state assistance I had yearly paper work to fill out for both state and federal assistance; it was a lot of responsibility. I assumed that there wouldn’t be a problem handling things with dad for mom (as in the life insurance policy he held for her and his sparse saving account) once he passed but was I ever wrong! That POA (power of attorney) is only good as long as the person it is for is alive. I was told that whatever I needed to do to make sure mom would still be cared for that was in any way linked to dad, I’d better get it taken care of while he was still alive and quickly!
So for a few days I would come visit my father, tell him don’t go anywhere yet, and then I’d run off to consult with my lawyer about how to handle things. It took me a few days but I got it all done before I had to make the decision of what to do about the ventilator. I didn’t want them cutting him anywhere so I gave in after what felt like being shoved into a corner and let them remove the ventilator. They told me he would probably last around 48 hours tops but they were wrong! He was transferred to a private room where he received only palliative care. The nursing staff on that floor were so kind to me. I was shown where the fridge with the snacks were and where the coffee machine was. I was given a card with the chaplains number on it to call anytime I needed it; for anytime I wasn’t in the chapel itself.
There were no visiting hours set for me; I could come and go as I saw fit. I didn’t turn the television on much in that room and when I did it was to something completely mindless like cartoons or game shows, no more news for me, I had had enough. I would pull a chair up and sit next to his bed and occasionally I would talk to him but by this time it was just sitting there with him to keep him “company”. I still recall how one time I fell asleep with my head resting on his bed next to his hand and I had a dream where he patted me on the head lovingly. I awoke with a start wondering if it had been real or not. I think in a way it was real.
I had stopped whispering in his ear to stay put until I came back and one day I whispered “I’ve gotten everything taken care of. Mom will be alright. You can go whenever you’re ready.” It took a lot to finally say that but it needed to be said. I know he heard me. In my heart I felt that hearing beeps of machines and whatever was on the television was just not a great last sounds to hear so I, or was it my nephew, made a CD of his favorite jazz music. That disc (which is lovingly put away) was loaded with Miles Davis, Coltrane, Dave Brubeck, and more. I had to dig through my memory of what he and mom used to play at home as well as through his LP collection which I now had. A wonderful thing happened which confirmed what I felt about what he could “hear”. His breathing by this time had become a bit labored and raspy the day I slipped the earphones over his ears. When I turned on the music his breathing calmed down and was far less raspy; his whole body seemed to relax. I was so happy that I was able to do something for him again instead of watching him leave.
One day they told me that his death was imminent due to whatever their reading and tests were showing them. I said I was going to stay there until he passed where upon they offered to bring in a bed for me. I had been resting in the hospital equivalent of a recliner chair up until that time and told them I’d let them know if I wanted the bed. I never needed it because that day as I was standing there talking to one of the chaplains as a nurse checked something on him he drew his last breath right before our eyes. It’s hard watching someone die in front of you and even harder when it’s someone you love. It wasn’t scary at all; it was surreal. I didn’t want to leave him. I wanted to stay until the funeral home people came for his body but they gently, but firmly, told me that it would be better if I went home to prepare.
I really really didn’t want to go because I knew the next time I saw him would be at his funeral and that was something I wasn’t looking forward to. It took a team of people that included my son, his father and my nephew to get me, my car, and their cars home. They didn’t want me driving for some reason (sarcasm inserted here). There were no more tears for me until the day of his funeral and not until they played taps…I lost it then! Afterwards when I would go to Jefferson Barracks National Cemetery to visit him, his father and then a year later a nephew, I would bring a pillow and sit on his grave facing the headstone and tell him all about my day, life in general, and of course about mom. I used to be terrified of cemeteries but there it is so peaceful and beautiful.
You are loved and missed, Daddy, but you and mom are together in a much better place and that’s good.
(If you are a caregiver you need to advocate for your loved one and don’t let anyone, no matter what their title may be (doctor, nurse, administrator, etc.), try to make you feel that you don’t know what’s going on or try to pressure you into a procedure or decision that you are not comfortable with. Learn everything you can about your loved ones condition, medications, test results, etc. An educated caregiver is a powerful caregiver. You will need a good legal representative to help you with the paperwork you will need – or at the least explain to you what you will need and how it works. You don’t want to be caught without the necessary tools for helping you take care of your loved ones needs.)