Tuesday, October 6, 2009

Life Beyond Death

I am finally taking the time to update everything. Life has been crazy since mom died. And on that note for those that don't know, my mom died only 20 minutes after getting her home on Labor Day.

After I made that post about her coming home (Sept 7) it was an insane day preparing for just that. I cleaned her house, contemplated where to put the hospice bed that was being delivered that day, waited for the oxygen delivery, went to the hospital to pick up the Comfort Care Kit which is just basically prescriptions for morphine and such to be filled. It was that part that scared me most because the nurse gave me the run down on what I was supposed to do and it was as though I became an instant doctor with 6 medications to give mom. But of course they all had directions like give this one for that and not this one if that and don't over do this one and only this many for that one. Oh my goodness as if my head wasn't spinning enough already and I had to administer all of these to mom as well once she got home?!!!! Ok then. I was left to administer morphine to my mom by myself which doesn't seem right. My brother and I had no help on any of this. No one to guide us through.

That was the other thing, hospice couldn't come in on Labor Day (the day mom was coming home) and my brother and I were left to our own devices on how to care for mom and figure out how to do things on our own if need be. That was not cool in any sense of the word. Hospice left us high and dry. We were actually lucky to even get mom home at all on that particular day. We had to fight in the nice sense of the word to get her home. They didn't seem to understand that when you say someone has 2-3 days at the most left to live, that was for an average "healthy" person, not someone at 68 lbs who is already half in the bag when considered "healthy". She wanted to be home - she begged us to get her there and that is what we wanted to do for her. It was her right.

Thank heavens my brother DEMANDED nicely she get home that day knowing time was ticking and wanting to respect moms ONLY wish to die at home. Some of the hospice nurses didn't even return our phone calls that weekend regarding all of this which we found astoundingly unprofessional. It was not a good situation and I am sure they must have learned from this scenario, (at least I hope they did) because they dropped the ball big time.

On another note, hospice WAS able to coordinate the bed and oxygen to be delivered which was great. Unfortunately the bed came with NO sheets, pillows, blankets, or anything. That meant that we had to go sheet shopping among everything else while trying to actually BE HOME for moms delivery by the ambulance. What a mess!

When the oxygen delivery came I also got to become the new oxygen expert in the house learning how to turn things on and off, make sure it was the right flow, make sure the mask was working, all the parts in order. OMG I was overwhelmed with one huge tank, another mobile tank and then the other automatic tank that was just a plug in. My head was whirling on trying to absorb all the info all by myself knowing that know one else was going to be there to help me.

Getting moms prescriptions (the Comfort Care Kit) from the pharmacy that day was also an interesting adventure. All they cared about was figuring out who was going to pay for it! Hospice did in the end (good on them) but I almost missed moms return home because of the "who is going to pay for it" scenario. I had even allowed ample time to pick them up in case there was a snag! Thank heavens I had moms purse with her drivers license, medical insurance card and social security card in it because without that I would have been left high and dry with NO prescriptions for mom at home and no advocate to help me!!! You know......because it was Labor Day and all. Need I remind everyone that death doesn't care about holidays.

But I did get home about 15 minutes before the ambulance showed up. They transported mom from the hospital she was in back home. That ambulance showed up at 5:06pm. When they took mom out she was sound asleep, breathing heavy and the breathing was in between long pauses. That was just how she looked during the day when I went to the hospital to pick up the prescription sheet from the nurse.

As she was being wheeled from the ambulance to the house my brother leaned down and slightly woke her up when he said loudly "Mom, you are home!". She opened her eye up just ever so slightly and shut it again going back into her deep slumber. I did not see any of this as I was in the house.

I asked the paramedics how she was doing and they gave me her vitals which were already worse than what they were at the hospital when I was there early afternoon. Her heart rate was up and her blood pressure was falling. Two signs that her time is near. Plus they said her vitals had already changed for the worse in the 45 minutes or so that they had her. She was going fast my poor dear mom.

They then took mom from the gurney to the hospice bed that was surrounded by sentimental trinkets, pictures, a rosary and things mom loved. It was my niece who thought it would be a great idea to set up everything like that and it was. The paramedics then hooked her up to the oxygen that had been delivered earlier in the day and said sorry and left. Man they have a tough job!

My brother, myself, Karen the caregiver/good friend of the family, my brothers wife and daughter were all there next to mom. We sat for the first time that day and just stared at mom while taking a moment to rest. Mom was so sound sound sound asleep and breathing incredibly heavy. She hadn't woken up through any of this process except when my brother woke her up with his voice. I even wondered at one point if she may be in a coma.

I then went over to where the prescriptions were to try and remember what I was supposed to do or not do and give or not give. While going through the instructions for everything I saw a pamphlet that was full of phone numbers to call in case you need 24 hour live in care. I took one look at it and thought to myself that there was NO WAY we would need it; mom was going fast. I threw it out and just as I did my brother yelled "Kathy Kathy!" My first thought was that mom was awake and we could say a quick good bye to her but it was just the opposite, mom had stopped breathing.

I got over to my mom immediately to watch her final breaths. It was a surprisingly a very very peaceful moment.

Because we were at home we all got a chance to say our good byes one by one without being rushed. It was actually nice hanging out with her and talking to her - she just looked like she was sleeping. I didn't want her body to leave the house but we finally called 911 and told them that it was an expected death (which we had been instructed to do). They sent over the fireman with the defib kit and I thought you have got to be kidding me....you aren't going to try and revive her are you? We started rushing around trying to find the DNR (which was at the hospital!) orders and it was a stressful moment that was for not. They weren't going to try and revive her. That would have been ghastly and we were freaking out there for a while indeed.

Then next up was the police and then the medical examiners that had to come by and treat everything like a crime scene. That was just the icing on the cake for the day. I guess they had to make sure that we didn't do something to edge mom out of this world faster. That was a bit horrifying as well watching as they took photos of her and stuff. That was lame.

By the time the coroners came about 4 hours after her death we had seen all that we wanted to see, we had said our good byes and we were ready for her body to be taken. That would be the last time we saw her because she was being cremated.

Death at home is the way to go for the surviving family that is for sure. We got all the time that we wanted with mom. It was amazing.

I didn't get to talk to mom at all that day, only the day before on Sunday very briefly when she was still in the hospital. You never know when you are going to utter your last words to someone do you? I think for mom to me her last words were her just trying to get me to leave the hospital room because she was tired. I have to chuckle at that. She knew what she wanted at least!

She also knew that she wanted to die at home and once she knew she was there, she did. It was as though she crossed her own finish line. Good for her!

The next day, Tuesday, Chris and I went out for a breakfast before we got to work with the estate and I must say that people surprise you in so many ways. The waitress, once she found out my mom died not even 24 hours before, hugged me repeatedly, teared up and even sat down with me. She then gave me my breakfast for free. Wow. People can be amazing and understanding can't they?

But on that note, I am amazed at the disconnect some people have regarding death. We ran into some very interesting situations where people (not family mind you) felt that we were not taking the right steps or not taking the steps quick enough and were very quick to judge. We were even called disrespectful children at one point by a non family member. Wow thanks, that is just what I needed to hear right now.

But yeah.....the next day. My brother, myself and Chris all met at moms house and just kind of sat at the kitchen table going: what do we do now? Like seriously. What do we do?!!! I think it is at that moment that you realize you are completely overwhelmed with SO MANY things that you need to do that you really feel like you have no idea WHAT to do...or more so where to start.

The whole next week was chalk full of moving mom out of her assisted living apartment, changing address, discontinuing services, thinking about the obituary, making tons and tons of calls to family and friends. Mom even had a list of people she wanted called upon her death! Miss organized I tell you.

We also had to go to the funeral home to discuss the arrangements that mom had done ONE MONTH earlier. She was such the planner. She had already even paid for it all - a GREAT gift to the family on that one.

The visit at the funeral home took 3 hours because they mixed up the plot for her ashes that she bought!!! The guy who helped her pick it at the funeral home remembered her picking one spot but he wrote down another and was confused by what he wrote. So we had to go look at the area and guess where she had wanted, then make a few phone calls to my aunt and uncle who happened to by with mom on the day she chose the spot and finally got it nailed down. What a cluster but it was very good of this guy to fess up and let us know what was going on because he certainly didn't have to!

The other thing we decided we needed to do was tell dad what happened to mom. We thought he had to right to know since they have been married 56 years so we marched into his Memory Care unit to do just that and the nurses stopped us. We ended up having a panel discussion with the nurses as to WHY we would not tell dad the news and they made some extremely good points. One of those points was that a person with dementia can for years relive bad news on a daily basis as if it were a new thing. That isn't good and we don't need to add to dads suffering.

We are also are VERY aware that of course the nurses don't want us to tell him because it can change everything (his blood pressure, routine, heart rate, attitude, can make him combative etc) and there is some interest on their part for us not to tell him - we get that. But more importantly we don't know what dads comprehension level is, if he can even hear us well, understand a whole sentence vs. only getting half of it before shifting to la la land. Too many factors and bottom line is we want dad to have the best care possible and want him to be happy.

For that matter we don't even know if dad can distinguish hours from days/months/years so just because mom isn't visiting him anymore may not mean a thing.

But what dad DOES have left is the ability to pick up on his surrounding, our body language, our facial expressions and simply just knowing us (his kids) and how we operate and I am sure that him seeing Chris there suddenly, then my brothers wife too, and my niece ......but no mom.... may have raised some red flags in his mind. Never mind the fact that I completely broke down in front of him which I did not want to do for the fact that he may pick up on it.

So we did not tell him and we may not but what an ethical dilemma! Yet another thing to figure out for us kids. Yikes.

On a side note, I also kind of feel like moms last act of parenting was dieing on the day and week she did. Chris, my husband happened to have the next 10 days off and he was able to fly in the night she died and was able to get me through things and help with everything too. The timing couldn't have been better and knowing how my mom planned things, I am sure she planned it this way the best that she could.

Her last act of parenting was to make sure the kids were ok and taking care of in every way. She was worried about me I know because one day the week before she died while in her hospital bed she looked at my brother and said "you take care of her!" I also know that she knew how scared out of my mind I was to take her home. I was so scared and knowing her, she didn't want to put anyone out so the faster she went once she got home the better in her mind. She was something else I tell you! A strong willed women.

The timing of things being as it was, we rented a moving truck later in the week, went through and split everything up 50/50 with no problems (it is just STUFF, no sense arguing about junk you can't take with you into the next life) and packed for 6-8 hours a day until we were ready to leave 6 days later for Utah. We could not have done this process without Chris who was so awesome loading up the truck. The timing was seriously amazing that we were able to get all this done.

My brother and I split things up even as for the duties that lye ahead. We are in charge of everything because dad cannot handle anything. So brother is doing the bills, attorney stuff, dealing with accounts, cars, insurance and I am doing the more fluffier things like obituary's, calling moms friends, writing thank you letters, handling moms active email account, getting items to people that are requesting them (yes people do this!!!), planning an estate sale, dealing with cemetery stuff and most importantly planning the Celebration of Life party which will be held in November.

My friends and family members have been such pillars of strength for me through all of this and without everyone, I wouldn't be where I am now. Thanks for your kindness, generosity, your understanding and your willingness to listen. You are all amazing people and I am so lucky to be surrounded by people that love me the way you guys do. Thank you!


Heather Szabo said...

Wow Kathy. Thanks for sharing such an amazingly difficult part of life. Hold up as best you can, but let down if/when you need to as well. Take care. Heather

Grizzly Adam said...

Thanks Kathy, great write up.

Jennifer Franklin said...

Beautifully expressed Kathy. I wish my hugs could span the distance to Washington.

Heather Szabo said...

Hey Kathy,
Just wanted to drop a line and let you know I was thinking about you and hope you're doing ok. Be strong, but remember it's ok to break down and cry whenever you need to too.

Lindsay said...

Sometimes life is so difficult, but I admire the strength you have shown. Best wishes to you in this difficult time.

Krista Park said...

Wow. You make me wish I had met your mom...