I have been taking a break from the blog the past week or so and just been interacting a little bit on Twitter. I thought I would stop in and talk a little bit about end of life planning. One of my close relatives is not doing well this week and the outlook does not seem promising. This person has lead a full life and everyone in the family pretty much agrees that it is better for them to go quickly rather than to linger. That being said, I was really surprised to discover that almost nobody was in the loop as far as what to do if this person (who is the glue that holds our family together) were to get ill and not be able to take care of themselves. I thought that when this person’s spouse passed over a decade ago that everyone got together and hammered things out since it was quite a mess and nobody knew what to do. Needless to say nobody agrees on care and there have been some huge arguments that could have easily been avoided.
Even if you are healthy you should have basic care initiatives laid out in an easily accessible place for family members to follow.
I thought I would talk about some of the more important aspects of long term care and highlight some of the most important areas to plan out in advance. It is highly recommended that adults should have a basic will in place, this is especially true if you have kids. We have one drawn up but not officially signed that basically says that everything is split between the kids evenly. It took us a couple of hours to fill out the forms and we just have to go to a notary to get it signed but life got in the way. This isn’t an excuse though! Last week’s events motivated me to get on the completing of our will. A basic will should not cost you more than a few hundred dollars and many employers offer lawyer services as part of their benefit packages that you should take advantage of to draw up a basic will. You can always go back and change it later but at least you will have something in place with your care directives all lined up. Keep a copy in a fire proof box somewhere in your house that will not be destroyed by a natural disaster (earthquake, tornado etc) and a digital one as well.
The three most important things to have in place are:
DNR (Do Not Resuscitate) Paperwork
This should be very clear on what conditions you want treated. I have worked my way through a couple of these and there is a line on there that describes giving anitbiotics that can be very murky. Do you want antibiotics if they will cure a life-threatening illness? Do you want them for something not necessarily life threatening but could turn into something life threatening later on? Do you want antibiotics for something non life threatening but might cause discomfort? These need to be clearly laid out in the DNR and explained to all people that might have to make a decision about your care under pressure in the hospital (spouses, children, close family and friends).
Example: You fall and break your hip requiring a long stay in a rehabilitation facility. You are unable to use the restroom by yourself and require help which is not so great and you develop a UTI which goes unnoticed until it gets bad. Did you know that UTIs can cause delusional thinking if left untreated? Once they reach that point you will require hospitalization and will be unable to make your own decisions. This is where the antibiotics section of the DNR gets murky. Clearly your issues is the UTI but giving antibiotics to save your life might not be what you want and doctors have to follow the DNR exactly to protect themselves from lawsuits so it is important that you are clear about what you mean by “antibiotic use”.
Clear Instructions for Long Term Care
We spent a lot of time over the weekend wondering what exactly our relative wanted for care. Did they want to stay in their home? Did they want to be placed somewhere? Nobody knew because there was no discussion before hand. It would also be wonderful if someone in the family was in charge of researching what care facilities are good in your area. There has been a lot of scrambling the past few days with people trying to make phone calls and figure out where is a good place that is not too expensive. You should have a rough idea of what places have good reputations and have a clean bill of health. Here is the link to the DSHS long term care facility information page for Washington State. I am sure you can Google your neighborhood and find information about care facilities in your area. This site here provides detailed health inspection reports of nursing homes from Medicare and rates them based on health inspections, quality and staff. I have found it extremely helpful and quite honestly some of the health inspection reports I read were difficult to get through.
Long Term Disability Insurance in Place
You never know what lies ahead and most standard insurance plans do not cover long term care. Nursing homes run from about $8000 to over $12,000 a month and sadly the quality of care somewhat depends on price. Cheaper facilities have fewer staff members available and that can lead to mistakes. Unless you have a large stash of cash set aside just for long term care your relatives may be scrambling to find somewhere that is both affordable and provides the care that you need. I have seen many families try to care for relatives on their own but it is difficult to do and many people burn out quickly.
Even having these three basic plans in place will ease the stress of decision making for your family and make your care go much smoother!
I hope that by writing this out it will at least spark some conversation with the people important to you and hopefully inspire you to take action and get a basic will written out and explained to the people you have chosen to be your care givers in the event that you are incapacitated. At the very least speak to those close to you about your DNR requests so that if they are ever in a position to make a difficult decision they will have some sort of idea of what you want.
Below are some websites that I found with much more detailed information about will writing and many more questions you should be asking yourself. It is not an exhaustive list but somewhere to start the process. Please feel free to comment with any other helpful links! I am sure there are many more out there!