My Second Long Goodbye: Chapter 7
I am starting this post where I left off the last one with my wife’s emergency room visit to have a scalp laceration stapled closed. I want to start here because this incident awakened me to a glaring problem concerning my care plan for my wife. The incident forced me to confront the reality of what it means to have the power of attorney for health care for another individual. The awesomeness of that responsibility came crashing down on me when the doctor asked me whether or not he should administer a shot of anesthetic before stapling the wound closed.
He explained that the shot would be painful and that he would only be using two or three staples which while also being painful might be preferable to the pain of the shot. It suddenly dawned on me fully that I was now responsible for deciding how much pain my wife was to endure. I was momentarily unable to respond as I processed the fact that my wife no longer had any control over what was happening to her and I now held her fate in my hands.
With the power of attorney comes the awesome responsibility of making sure your loved one gets the best possible care and that means making hard decisions when difficult circumstances arise. After consulting the doctor further we decided to close the wound without the shot. Watching my wife wince in pain as the staples were placed and hearing her cry out in discomfort as an additional procedure was done was excruciating for me and brought me to tears once more.
It quickly taught me that this journey is filled with pain and requires unimaginable strength and fortitude to walk it with your loved one.
For the past several weeks at group when asked how things were going I would answer that things were pretty stable and going well all things considered. I was having regular visits with my wife where we would cuddle and listen to music or go for a ride and just enjoy each other’s company. She obviously still knows me and we tell each other we love each other and we kiss and I rub her back and neck and all is well. I explain again to the group how I have my wife in the best possible care home with loving compassionate empathetic care givers and an owner who takes personal interest in my wife and her care. She is getting the best possible care I can provide. I have everything under control and feel good about where we are on our journey.
Wow was I wrong! I do not have everything under control and I need to do something soon to rectify that glaring error. When the caregiver phoned me to tell me that they were calling 911 and sending my wife to emergency and no they didn’t have anyone available to accompany her I immediately jumped in my car and headed to the hospital to be with her. That was the obvious thing for me to do but what the incident triggered in me was the thought of what would have happened if I had been unavailable for any reason.
Who would have gone to be with her? Who would be able to make the necessary decisions on her behalf? I didn’t have answers to these questions. I didn’t have a backup plan!! In fact I didn’t have an original plan. I had been lulled into a sense of security knowing that my wife was in such an outstanding care home that I had stopped making any more plans for our future. This is a huge mistake. You need to have plans for contingencies that will arises in the future no matter how good the situation is at the moment.
So let’s talk about what you need to be thinking about and doing right now.
Who steps in during an emergency?
First consider if you are not available in an emergency to make decisions who is the person authorized to make those decisions? Do they also have the power of attorney to do so? Do they live close enough to actually step in if necessary? In my case our two sons have the backup authority but one lives in the Bay Area at least two hours away and the other lives in Texas thousands of miles away. Neither of them is instantly available to rush to the hospital to be with their mom. I need to fix this and find someone local and make sure they have the authorization and the will to step in. You also need such a person for your loved one.
What to write down for home care
If you are caring for your loved one at home either by yourself or with caregivers you need to have a written document that lists several things. It should at least include:
- names and phone numbers of doctors and caregivers
- what specific types of care your loved one needs and how to provide them
- specific behaviors they may exhibit and how to deal with them
- what specialty items they may require: walker, wheelchair, cane, cpap machine, etc
- what medications are being administered and where they are located and how often they are to be administered
- which hospital emergency room is closest or if there is not a rush which is preferred
- where the necessary medical cards and the DNR and Power of Attorney papers are located
- if religiously affiliated the phone number for the place if in need of someone to provide religious rites
- if your loved one is deceased name and number of mortuary to call
- names and numbers of family and friends needed to be notified
This is not meant to be an exhaustive list and each person’s situation is different. In my area University California Davis has a multiple page list which you can obtain by calling them.
Planning when your loved one is in a facility
If your loved one is already in a care facility many of the items listed above will already be on record at the facility but those that are not should be readily available in your home for whomever is going to step in. Actually it would be wise to make a copy of this list and go over it with any and all persons who may find themselves standing in for you most especially with your primary backup. After reviewing the list give it to the person who has accepted the awesome responsibility to hold your loved one’s life in their hands so that they can place their copy where it will be readily available to them if the time ever comes where they are called upon.
The items needing to be listed and available for someone to take charge in your temporary absence assume that you will return to the primary role of responsible party for your loved one as soon as possible. What if that is not the case. What if you suffer some accident or illness that incapacitates you or you die suddenly? What happens then?
If your loved one is still being cared for in your home will someone step in to allow them to continue living at home. Will it be a family member or hired full time caregivers? Do you have a contingency plan ready that would allow for transfer to a care home? Have you discussed what type of care home would be appropriate with whomever has the backup power of attorney? Does the same person hold power of attorney for both finances and health care? If not do the two different people know who each other are and how to contact one another? How is any of this to be financed? Do you have insurance to cover it and if so where is the policy and how is it implemented?
If your loved one is in a care home already, do you have a plan in place to allow them to continue living there? I personally have automatic payments made each month from my checking account directly to the care home but until this very moment I have not made certain how those would continue if I were to die. I need to do that expeditiously. You need to address this financial concern also.
I don’t write this blog to overwhelm you but rather to help you to begin to understand the enormity of the challenges that can present themselves as you travel this journey. It is meant to make you aware of things you may not have thought about because your focus is rightly on caring for your loved one in the moment which takes most of the time and energy you have! However the reality is these things are important and need to be attended to and the sooner you are aware of them the sooner you can begin to accomplish them so that when and if the time comes you and the people you are counting on to step in for you are not totally unprepared for the moment.
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