Purging the Monster, Preparing for Reality

They say time flies when you are having fun. I suppose that was true when I was young. I don’t remember. What I know today is that this year has flown by, not because it has been of particular merriment, but because it’s been a blur of one crisis after another. Or so it has seemed. Honestly, I can’t remember them all, I just know that this last one has sucked me dry…

Sunday, my 72 year old aunt passed away from a vicious battle of spinal bone cancer. Over the past nearly eight weeks my husband and I have spent an inordinate number of days between two hospitals helping her through her ordeal. [SPOILER ALERT: Graphic medical descriptions to follow] It started in her home town hospital with the diagnosis of a rare form of diabetes with her blood sugars close to 800 and severe dehydration. Then, things quickly warped into the discovery of a sac of fluid attached to the outside of her lung causing breathing problems and rushing her down to a training hospital. Inside that sac of fluid was some blood. The fluid was drained, and we thought the problem resolved, however, a search began for the source of the cancer. Within days the sac had filled again, this time completely with blood, causing immediate surgery to have it removed from her lung. Pathologies were revisited and the original fluids containing traces of blood were found to also contain some cancer cells, however, the kind and the source were unknown. So a search began for the source of the cancer cells because there was cancer in her somewhere.

After several days of heaven only knows the number of tests, it was determined that there were markers of cancer but the source still remained a mystery. The specialists began to call my aunt the Mystery Woman. What was conclusive, however, was a tumor encasing her spine in the middle of her back, causing fractures in her spine. Surgery was out of the question because she was too weak to withstand it. Chemo was most likely a moot point in the bigger picture. The only thing they thought might be of some value was one heavy dose of radiation to shrink the tumor to help with the pain she was about to endure because she only had a few months to live. She did have back pain, but miraculously, not a tremendous amount at that moment. That was the long and the short of it.

She was in the first hospital about two days and then transferred to the teaching hospital for three weeks and then back up to the original hospital in her home town for the remainder of her life, about three more weeks. Her disabled husband saw her a total of maybe five times, because he could only get into certain cars to travel because of his arthritic condition. He stayed in contact via telephone and on conference calls with all of us and the doctor whenever possible using one of our cell phones. It was a terrible time for him, to say the least.

My husband would go up every few days and care for his needs – the ones my aunt had spent the last four years of her life doing religiously for him herself because he was too stubborn to apply for help from the county. We lived an hour away from each hospital and spent a lot of time on the road either way. Uncle began to exhibit signs of dementia and other aggressive behavior problems, which only added to the already stressful situation.

In spite of our health care system taking their sweet time in processing paperwork  here and there, my aunt received exemplary care at both medical facilities by professionals who took their jobs very seriously – from the certified nursing assistants to the best surgical staff in the area, and everyone in between. She received Hospice care because a doctor cared enough to make sure she was placed in a bed that allowed appropriate care. So in the end, while this monstrous disease ate up her spine and caused pain beyond one’s worst imaginings, my aunt sedated sufficiently so that she was able to die peacefully with her best friend from childhood by her side, and auntie whispering “I love you” to  her husband one last time. My husband and I had spent a good few hours with her earlier in the day and we have a fond memory of her to cherish in our hearts, as well.

I’ve written the obituary and will be writing the eulogy tomorrow. The roller coaster ride through hell has come to a stop at the bottom of the rails, yet it still rocks back and forth before letting me out. I’m not sure when I’m going to be able to get off. I don’t know what normal is. I have wandered around this house for weeks not being able to accomplish a darn thing. I can’t focus. I’m on a regular regimen of Xanax to get me through not only the day but the night as well. I’m depressed,  my sleep pattern is a mess, I sleep too much, I’m over eating. My knitting is continually a knotted up mess and has to be taken out again and again. I’d love to be able to start writing on a regular basis again, heck to be able to do anything on a regular basis again.

Our granddaughter had a beautiful baby boy, praise God! but we have yet to see him because he’s clear across the United States and we are here in this God forsaken valley. We are hoping in a month or so, we will be able to take a trip to Florida to visit, clear the cobwebs, hold the precious little miracle of life who came in the midst of all this summer horror.

I’ve lost every member of the family on my mother’s side – to cancer. All my father’s side of the family are gone. It’s just my sister and me and first cousins on my dad’s side. We are the Next Generation. We are the next to go.

I am a Christian, so I have faith in the promise of a future without pain, suffering, and sorrow. But I have to say, right now, that time cannot come soon enough. The Monster must not only be purged but destroyed.

One last thing I need to mention, well, two. Do not discount your health, people. Don’t wait until things are so bad, it’s too late. I don’t know if getting my aunt in to see the doctor a year ago would have made a tremendous amount of difference in the Big Picture, but I do know that if she had been seeing her doctor regularly, this bone cancer might have been caught early enough to have been treated in such a way that she wouldn’t have spent the last two months of her life scared and in terrible pain.

The second thing is, get yourselves organized right now with your finances, your legal matters, whatever it will take so that no one is going to be scrounging around at the last minute trying to figure out how to take care of you. And I don’t mean just an Advanced Health Care Directive. I mean, your funeral arrangements if you are going to have any, what you are going to do with all your ‘stuff’ you own – who gets what and how are they going to get it. If you are in your mid to late 50s, start downsizing your belongings. Start getting rid of the things that have no sentimental value to you; give away the things you want family members and friends to have, now, or at least clearly mark them and make a list of the items and keep them with all your other important papers so that when the time comes, those items can be easily and fairly distributed with no muss or fuss. The more you get rid of now, the less your spouse, children, or friends will have to deal with later.

Make it clear who you want to be your Health Care Advocate and I mean make it clear to not just your family but your spouse, too, especially if you decide not to have your spouse be that advocate. I just went through hell in a hand basket because my aunt chose me to be her advocate because she didn’t feel my uncle was capable any longer of making appropriate decisions for her, but she failed to actually say those words to that effect, and it started World War III in what is left of my little family. Severe wounds are still being licked, let me tell you, on me and him. And this was in spite of the Living Trust they had in place. It was a real mess, believe me.

And please don’t ask someone in your family or a friend to be your caregiver – that’s a 24 hour/7 day a week job that in all fairness takes a team of at least 10 to 12 people to manage the patient. My aunt wanted me to take care of her, and I would have loved to because I loved her, but realistically, with my disabilities, and even with my husband’s help, there was no way the two of us could have done it by ourselves without doing ourselves in. Burnout is real. The social worker was very concerned about that. The best place for your care is in a skilled care facility. You are at your safest there, all the way to the end. Had my aunt been in our home, and even if we did have help, should any one of us who might have been caring for her at the time have tripped or slipped or someone dropped her or in some other way caused her injury, we would never have forgiven ourselves and she would not have wanted us to have had that guilt on our shoulders. I know because I asked her. When I told her I couldn’t take care of her, it broke my heart and was a great disappointment to her, I know, but after we talked about it and other alternatives were found, she realized she was in the best place she could be.

I can’t stress enough the importance in making these decisions sooner than later. We think we have plenty of time, when in fact we have no idea how much time we have. Don’t put it off so that it ends up on the shoulders of someone else. It isn’t fair to the ones who end up bearing that weight.

 

 

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