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Why Everyone Needs An Advance Healthcare Directive

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Hey everyone. This post will be a bit of a downer. I’m in Chiang Mai to help manage the final stage of dementia for my mom. She has Lewy Body dementia. At this point, she is unable to do much. She can move her eyes and swallow a little bit. That’s about it. She can’t talk or make any kind of decision. Her body is completely stiff. She can’t move at all and we need to turn her every few hours to minimize bedsores. The quality of life is not good. Unfortunately, she didn’t leave any advance healthcare directive. We should have talked about this 3-4 years ago because it’s really difficult to make decisions on her treatments. Today, I’ll tell you more about what happened and why everyone needs an advance healthcare directive.

Advance Healthcare Directive

What is an advance healthcare directive? Basically, this is a document that will specify your medical treatments in case you can’t make decisions later. This is really important because your loved ones might not know what you want if it isn’t written down clearly. When Mrs. RB40 and I made a will, our lawyer set us up with an advance directive. However, I need to go over it to see if there are enough details. From what I recall, Mrs. RB40 will make all medical decisions for me. I don’t want a feeding tube or a ventilator if there is no hope of getting better. But now I see that we need more details. Mrs. RB40 can make decisions for me, but it’ll be way easier if there is a clear guideline.

My mom’s condition

My mom’s condition worsened quickly this year. When I was here in March, she could still walk a bit. We even went swimming a few times. But by summer, she couldn’t walk anymore. About 2 months ago, she stopped eating and my dad took her to the hospital. It turned out she got a lung infection. The hospital gave her antibiotics and put a feeding tube in her nose. She recovered from the lung infection but developed bedsore on her back after just a few days.

I got here 3 weeks ago. I found her with a feeding tube, an oxygen tube, saline and antibiotics drip, and a urinary catheter. She was getting antibiotics for UTI (urinary tract infection.) The UTI cleared up, but her condition was still bad. Her limbs were stiff and she can’t move at all. She could only move her eyes. Lastly, her bedsore kept getting worse. They cut away the dead tissues and tried to treat it, but it didn’t heal. Unfortunately, the bedsore kept getting worse over the last few weeks.

Palliative care

I talked to the doctor and they have 2 options in Thailand.

  1. Long-term care – They’ll try to keep the patient alive and treat everything. This is what they had been doing before I got here. My dad wanted to keep my mom alive as long as possible.
  2. Palliative care – Stop all treatments and let nature run its course. They’ll prescribe morphine as needed to keep the patient comfortable.

My dad wanted to keep her alive by feeding tube and hoped the bedsore wound would heal. But I was against that. At this stage of dementia, she won’t get any better. In the U.S., doctors don’t recommend feeding tubes for end-stage dementia. In Thailand, it’s up to the family. The doctor gave us options, but not much guidance.

My dad was afraid she’d starve to death if we removed the feeding tube. But I think it’s natural. When living beings are close to the end, they eat very little. There is no need to prolong life if there is no chance of getting better. I wouldn’t want food shoved down my stomach in this condition.

About a week ago, I convinced my dad to remove the feeding tube. Instead of a tube, we fed her by mouth. It worked okay. She ate a little bit of liquid food every day. I know this amount of nutrients isn’t enough. She already lost a lot of weight with the feeding tube. After we removed the feeding tube, she ate less than half of that. Also, she has difficulty swallowing and coughs occasionally. This will cause a lung infection at some point.

Unfortunately, her bedsore got a lot worse recently. We can see that she is in pain whenever we move her. She also got UTI again and the doctor prescribed antibiotics and saline drips. However, the bedsore wound looks truly horrific now. I’ll spare you the description. Two days ago, my dad finally agreed that we should move to full palliative care because the wound is so bad. We informed the doctor and he gave the ok. The doctor stopped the antibiotics and prescribed morphine every 8 hours. Since then, my mom sleeps a lot more and eats even less. She looks more peaceful with the morphine, so that’s good. I asked about euthanasia and the doctor said they don’t do it in Thailand.

More details are needed in our advance directive

All in all, I’m glad I’m here to help. If I was making all the decisions, I would have avoided the feeding tube since the beginning of her hospital stay 2 months ago. But that’s the problem with making healthcare decisions for someone who is unable to do so. Different family members will have different opinions. My dad wants to keep her alive. My brother and I think it’s better to let her go. Her siblings have different opinions. It would be better to leave a detailed advance healthcare directive so everyone knows what you want.

When I get home, I’ll review our advance directive and add more details. Maybe something like this. 

  • If I won’t get better, then I don’t want any life-extending measures.
  • I don’t want a feeding tube if I can’t eat, poop, or move.
  • If I can’t make decisions due to dementia or other brain trauma, just let me go. Please.
  • If it looks like I’m in pain and won’t improve, then go for full palliative care.

I’ll need to sit down with Mrs. RB40 and talk. It’s been a difficult few weeks. Thankfully, I’m retired so I could be here.

Image credit: National Cancer Institute

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Joe started Retire by 40 in 2010 to figure out how to retire early. After 16 years of investing and saving, he achieved financial independence and retired at 38.

Passive income is the key to early retirement. This year, Joe is investing in commercial real estate with CrowdStreet. They have many projects across the USA so check them out!

Joe also highly recommends Personal Capital for DIY investors. They have many useful tools that will help you reach financial independence.

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