Passing go!

This has been a long time coming.

It’s not the easiest thing I’ve ever had to do, but I’m really trying to let things go and let God sort it all out for me. Maybe this will help.

My mother made her transition September 13th 2008.

Yeah, it’s been a little while, but it wasn’t, and I guess still isn’t, easy for me. I’m an only son, and she depended on me for quite a lot over the last several years. She’s had congestive heart failure for the last 10years that I know of and it’s been steadily getting worse.

I took a job working overseas in February 2008. I needed the money and the pay was great. Mom was not happy about it, but tried to understand that it was best for my family at the time. I worked on a rotation of 5 weeks on and 5 off, so I did have time back home. During the time at home, it seemed like I spent more and more time doing things for mom, like taking her to her Dr’s appointments, things around the house that she couldn’t do any longer, going to the grocery store, etc.

Let me back up a bit here….

Mom was doing pretty good up till about 3 years ago. She lost a bunch of weight, had a bum knee replaced, and was getting around on her own without a lot of problems. She and I sang in the church choir together,and she was always there. Always.

Things started going downhill and before I realized, she was using her cane to get around, falling down at the house or just about anywhere really. She blamed it on her artificial knee, saying that it just ‘gave way’. Well a trip to the knee Dr. confirmed that her patella had come lose from the muscle that should have held it in place. Another surgery was needed to correct the knee and get her back on her feet. Surgery went well, therapy went well, and she was back on her feet, still with her cane (didn’t trust the knee yet..) She was having difficulty getting up from a sitting position, but chalked that up to the knee not being 100%. It got worse. She gained the weight back, and then some. She still fell occasionally, usually after getting up from sitting a while. She would call me to come and get her up off the ground after she had fallen. Somehow we would manage to get her up after a lot of trial and error, furniture moving and me straining to get her up. It got to the point that I could no longer get her off the ground by myself. My wife came to help once or twice, but that was hard on all of us. I started calling 911 and getting paramedics out to the house to get her up. Once, she had almost ripped off two toes from one foot while trying to crawl to the phone. When my wife and I got there, and saw all the blood on her foot and carpet, we called 911 to get her to the hospital.

We kept trying to understand how she was falling, and why. She said she didn’t remember falling, but just found herself on the ground. Kind of like blacking out. Usually after trying to stand up, taking a few steps and then… I asked her if she had spoken to her cardiologist about this and the answer was of course, no. I told her that she needed to call him and report these new symptoms to him. She finally did, after about a week of me nagging her to call him. He wanted to see her, so I took her to the appointment. Didn’t need her blacking out while driving. That would have been bad. He wanted to schedule an EKG and other tests (ok, so why did we have to come in for you to tell us this), as soon as there was an opening in the schedule.

She never made it to the appointment. She called me one day around lunchtime, voice slurred, and told me she thought she had a stroke. To which I replied “Have you called 911?”. Well no.. I thought you could come over. Well, I did and she was in bed and was afraid to try and get out of bed because she might fall and break something. I called 911 right then. The paramedics arrived and took vitals. Nothing conclusive, and mom was sounding better, and was responsive to the questions the paramedics were asking. They seemed concerned that the vitals weren’t their best and her BP was lower than they wanted to see, so they opted to take her to the hospital. They tried to get her up from he bed and she started to collapse. The managed to keep her on her feet, although it was not an easy task for them, I’m sure. The cardiologist on call examined, and felt sure that she had not had a stroke, but her BP was lower than they liked to see, so they admitted her for observation. Her regular cardiologist was notified and he took the opportunity to run the tests he wanted at that time. After all the test, he told her that she was find but they were going to modify her prescriptions a little.

I should have had a clue by that time that all was not well. I didn’t.

Things progressively got worse for mom. She borrowed a lift chair from a friend of ours so she could get herself up and on her feet without straining to do so. Her doctor got her a hospital type bed so she could sleep at night. He ordered home health care, which didn’t do much in my opinion. They came in twice a week to take her vitals, and that was about it. They would fix her a sandwich if she asked, but that really wasn’t what they were supposed to be doing. She also had someone come in once a week and give her a sponge bath and wash her hair.

Somewhere in all of this, she managed to take out a reverse mortgage on her house. They were quick to lend her what she wanted. They knew what I didn’t.

Things got worse….

She was getting winded just walking from the office to the bathroom, 20 feet away. She couldn’t get out of the bed anymore, so she sat, and slept in the lift chair. She quit using her computer, because she couldn’t get our of the chair and back to the lift chair. She had the toilets replaced with higher ones, meant for handicapped use. She even had trouble getting off of them too. He had the tub in her bathroom replaced with a walk in shower, but never got the opportunity to use it. She kept on falling down. It got harder and harder for her to get up and get to the kitchen to fix something to eat. It was becoming increasingly clear that mom was going to need assistance everyday. We checked with the church to see what they might be able to do. Money was a big issue. There was some, but not enough to pay for full time care. We talked to my youngest daughter, who just graduated from high school. She was agreeable and moved in with grandma to help out. She didn’t have her drivers licence yet, so shopping presented an issue. There was a local store that would deliver to her home so that issue was resolved.

I don’t remember just exactly the situation was, it must have been on one of my trips overseas, but again, mom couldn’t get out of the chair, couldn’t make her legs work. My daughter call my wife and after two trips to the hospital and being told that nothing was wrong, go home… My wife told her to tell them she was having heart problems, and the hospital would admit her for observation, and while she was there, get a consult with her knee doctor. Mom did that. Well almost. She did get herself admitted, but neglected to get a consult with her knee Dr. After a few days, she was released to rehab, for her heart. She was in rehab 30 days. Medicare would not pay for longer, and the only rehab they did was heart related. By some strange quirk in the medical system in the states, she was not admitted into rehab because her legs didn’t work, she was there because she was having heart trouble and even though they knew she couldn’t walk, they couldn’t give her therapy for that.

So two days before she is to be released, I’m told that I will need to find care for her or care for her myself, because Medicare will only pay for 30 days of rehab. Sheer panic set in. How the hell am I supposed to find a place that will take care of her, when all she wants to do is go home? Now to top it all off, she’s grossly overweight, and I’m told that wherever she goes, they will need an electric lift to get her in and out of bed/wheelchair/etc. Medicare will pay for a hydraulic lift, but she needs an electric. Cost, $500. We find a place (finally), arrange to have her bed and wheelchair moved there, and the electric lift, and the next day, she’s at a personal care home. This is similar to a nursing home, but without the nurse. There is one that comes in once a week to check on the residents. Cost, $2,700 a month. She didn’t like it there and complained, day and night.

August 15th. Her birthday. Also the day I was to head back overseas. We went to see her and took her a card or two, and visit a spell before heading to the airport. It was a good visit, but not a particularly happy one. A few of her friends were to come over that day and had to cancel on her at the last minute. They came the next day though. She had finally resolved herself to accepting the fact that she was in a home and would start working with a therapist to get the strength back in her legs so she could get out of there and back into her home. It’s where she wanted to be.

She wanted her chair (the lift chair) there so she could sit up and watch TV (yes we had to buy that). And so my wife got our friends and their kids to get it moved for her. At some point while I was gone again, she decided to try and stand, and ended up falling. They had to call the paramedics out to pick her up and get her in bed.

A week later, it all came undone…

I got a phone call late one night, I think it was August 26th? I was in my hotel room, getting ready for bed. My wife was on the phone. Mom had been taken to the the hospital and was in Cardiac ICU. I asked how bad it was. All she said was that I needed to talk to the attending nurse. Not a good response. And certainly not what I wanted to hear. She said that he was supposed to call, and was surprised that I had not heard from him yet. I got the number and called.

Mom’s wishes had always been, it she’s that bad off, let her go. No life support.

The had her on oxygen, and dopamine. Her blood pressure was erratic and dropped upon occasion. She had developed some sort of infection, although it escapes me as to what it was, but when people were visiting, they had to wear gowns, gloves and masks. I reported my situation to my boss overseas and they told me I needed to get home now. I held out. I thought I really needed to see what was happening first, maybe this wasn’t as bad as it have been made out to be. The next day, I got a call from the hospital. The nurse on the case told me that they needed to put mom on a ventilator. That meant sticking a big tube down your throat and having a machine breath for you. I decided that things weren’t going to get better. They also wanted to do dialysis, was I ok with that? No, i wasn’t, but I was 16,000 miles away and not sure how fast I could get there! I called my boss and he told me to catch the next available flight home. Things will be ok here till my replacement show in a week.

I call Air Travel for our company. They get me out that night. I have 2 hours to get to the airport and on the plane. I call my wife to let her know. She’s been with mom every day since she went in to the hospital (she is truly an angel), and says that’s great!

I don’t sleep much on the flights although it’s 20 something hours and I’ve gotten little sleep for the past 2 days.

I arrive at the airport at home on September 1st. First stop is the hospital. She’s not doing well and fighting the ventilator. She tries to speak. Can’t. Tube down her throat. Jesus, how did this happen so fast! She’s trying to pull; the tube out and I tell her she can’t take it out. Between the ventilator wheezing and breathing for her, and the dialysis machine whirring, and things going beep, boop, beep, it’s scary. I’m not sure what to say, what to do, how to act. I hold her hand. I tell her that I know what she wishes and I’ll take care of it. A calm comes over her face. I tell her I love her, and I leave to find the nurse. I tell him we need speak with the attending. The attending tells me that there is not much hope for improvement and that the best we can hope for is that once the ventilator has gotten her breathing capabilities up somewhat and they remove it, that she would probably need to remain on dialysis. I tell him her wishes. Remove the ventilator as soon as possible, and no more dialysis. I’ll sign the DNR (Do Not Resuscitate) order now.

That is absolutely the hardest decision to make in anyone’s lifetime.

That night her blood pressure bottoms out. They call her cardiologist, who puts her on Dopamine again, against the DNR. They tell him that I’ve signed a DNR and he tells them to do it anyway and he would talk with me in the morning. He never made that call. But when I found out, I was livid! So was the attending Dr. I called her cardiologist to find out why he chose to go around the DNR? He told me that it didn’t make sense to him, why we would treat the infection and still have her on the ventilator and dialysis and not want her resuscitated. I told him that I had instructed them to remove her from the dialysis and ventilator as soon as possible and it should be done today. He was to abide by the DNR from here on.

I went to see her. She was in a coma. Non responsive.

Three days went by and they had removed the ventilator and dialysis and moved her into a semi private room. I got a phone call from the hospital, I figured this was the call to tell me that she had made her transition. Nope… She’s awake and talking! WHAT? We went to the hospital and there she was, sitting up in her bed, and talking, but to whom I really couldn’t say. She looked at me and said ‘When did you get here?’, and went back to talking to whoever else was in the room. She was having conversations with no one visible, although I’m sure that she saw someone. It sounded like a conversation anyway. I never really understood who she was talking to, but if we asked her a question, we might get an answer to that question or a different question all together. When asked about family, friends, pets, we got nonsense answers. When I asked her who I was, she would answer ‘I don’t know…’. She kept trying to take her gown off and seemed to be irritated that it was on. My cousin went to see her a couple of times, and begged me not to do anything rash, as she felt like she was getting better and going to be ok.

A day or so later, a very dear friend from church called and asked if it would be ok if she went up and saw mom. I did let her know that even though mom was there, she seemed to not know she was anywhere. She went to see her. We went up later on and things were not any better. While we were there, the hospital social worker came in. We went to the waiting area at the center of the wings and she told us that we were going to have to find a place to put mom (where have I heard this before), due to the fact there was no more the hospital could do for her. Again, tasked with finding somewhere for mom to go. I called the home that she had been at in early August and they indicated that they would be able to take her back, just let them know. I did tell them that she had become somewhat odd in that she was agitated easily and really didn’t know where she was or who was with her. They said that it would be alright.

I got a call later that evening from our friend from church and she asked if we had discussed putting mom in hospice. I told her I had no thoughts on it at the time, mainly because I didn’t know anything about it. She told me that she worked with hospice for 6 years, and mom definitely qualified. She would make a call and get things rolling. She told me that I needed to get in contact with the social worker handling mom’s case at the hospital and let her know that we want to talk to the hospice case worker and see about getting her transferred. Mind you, when we talked to her the day before, hospice was not mentioned at all. She arranged for us to meet with the hospice case worker and after a brief examination of mom, she told us that yes, she did qualify and they would like to get her moved as soon as possible. I asked how much that would cost, as funds were very limited. She started from the top, with the different ways the evaluate the level of care needed, length of stay, etc, and determine cost from that.

This is when we found out just how sick mom was….

She told us that her heart was working on a 20% capacity, and not to expect her to be around much longer. 6 weeks at maximum.

20% capacity? No wonder she is delirious! I was totally dumbstruck. Everything that mom’s cardiologist had led her and myself to believe was that her heart was strong.

So the case worker continued to tell us that with these conditions, she qualified for full care at no cost. I asked when they could get her moved and she told us that they should be able to have her moved as early as this afternoon, but if not this afternoon, then defiantly tomorrow morning.

We got a call later that afternoon telling us that mom had been moved to hospice and that she had been taken care of and was resting comfortably. It was September 11th, 2008.

Along the Gulf Coast, we have hurricanes. This year was no exception. We had a hurricane coming in fast. It was due to hit our area the early morning hours of September 13th.

We went to see mom on the morning of the 12th. We were pleasantly surprised that she was clean, resting comfortably and in a rather large room with plenty of space for visitors to sit comfortably as well. She was unresponsive, but I’m guessing that was the pain medication she might have been on. We stayed for a while then I told her that I loved her and we left.

We got home and started preparing of the hurricane. There was a breeze but not windy. That was to change. By 8 pm. our neighbors tree came crashing down destroying our fence and coming to rest on our deck. this was probably a good thing as it kept any major damage from coming through our roof. By 10 pm. our electricity is out. The winds are blowing things around. It blew down another part of our fence. I got very little sleep that night.

The next morning, the hurricane had blown through, the winds had dies down and the sky were surprisingly clear. Time to inspect the damage. A few shingles off the roof, but no structural damage on the house. The tree that fell through the fence, was blocking all access to the back yard. It would have to be cut up to give us any access to the back. The power was out and would be for another week. I started trimming branches. Around 4 pm, I got a call.

Mom had made her transition earlier that day.

I don’t think I will ever forget that call. I knew it would happen, I just didn’t know when.

Mom, I love you. You gave me life, took care of my cuts and scratches. and kissed the bruises to make them better. You stood by me, and held my hand when I needed it (whether I knew I needed it or not), soothed my broken heart, but most of all, you believed in me. You helped me grow into the person I am now, hopefully a better person that I would have been.

You are missed by family and friends, and will always hold a spot in my heart.

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