Sunday Stroke Survival: An Advance Directive Gray Area to Think About and News

 

I'm happy to report that my endarterectomy went off without a glitch.  Of course I went over again my advance directives with my DPOA/HC before my surgery. Even though her copy of the living will spelled it out clearly, there was one additional item that needed to be discussed. If I had a devastating right sided stroke impairing my functional left side of my body and I survived.

This is a fray area in most advanced directives. They are mainly concerned with when and if I wanting artificial means of sustaining my life and care. Not if I continued to live (off ventilator) as a possible right sided stroke can do.

It honestly never crossed my mind because all my strokes to date (7) have been left sided strokes. I just figured a right sided stroke would kill me. An eleventh hour revelation caused me to formulate a plan for this occurrence. It was quite literally an eleventh hour because it was hurried text messages at 7 AM before my 1 PM surgery time. I figured my #2 daughter could show it as proof of my wishes in lieu of a notarized document. Not entirely legal, but it was better than nothing.

A few things happened when I went under the knife and afterwards. The day after surgery, the six attempted IV sticks before surgery made their presence known in glowing colors. It looks worse now that the bruising has spread with healing and now stretches around the elbow. I felt better after the successful endarterectomy. The draining stamina was nonexistent. The ET the anesthesiologist used had rubbed a section of my esophagus so it feels like there is an obstruction there and I'm stull hoarse. Yes, I was sore from the incision which is just below and follows my jaw line from my ear lobe to my mid neck (8" long). My neck will be  a road map of scars by the time they all heal between thyroid surgeries, T-CAR, and endarterectomy. Lastly, my #2 daughter called her sisters letting them know my wishes if this occurred.  That got my two younger daughters thinking. 

I actually feel great! Sure the incision site is sore and it slightly limits my necks range of motion, but that's to be expected. It's amazing what restored blood flow to half my brain does. No more headaches and more relaxed muscles in my neck. My brain is operating with less cobwebs now, which is always a good thing.

The night before last (Friday), I received a phone call from daughter #4, and surprise, surprise, daughter #3 was conferenced in.  It has been years since I have actually TALKED with them. I was almost in tears. Sure we Facebook, email, and text each other, but actually call to chat, not so much. Since daughter #2's call, they had been looking for options for me to move closer to family in the event I need to sooner than a waiting list would allow.

As expected, my children argued my choice of nursing home placement for now a mute issue. They wanted me to live with one of them. I refused outright. If I were to have a right sided stroke, I'd be total care. Both of them had jobs outside the home and short of them quitting work, they couldn't care for me without severe hardship.

Daughter #3, had another very interesting proposition for me. A year ago, she started working for a progression complex called Harmony at Savannah. They offer independent, assisted living, and memory care units. It's brand new and looking for applicants. It opened the week the COVID lock downs began in the country so it's filling up very slowly. My daughter is the assistant director of nursing there. As an employee, corporate offers a discount rate which is locked in for life for family members. With the discount, I'll well be within my means. I'll have family around (daughter, her husband and my two granddaughters) and only be an hour away from more family (father, sisters and brothers, etc.). As already stated I don't need or have much. I definitely wanted a private kitchen and bath. Everything else is optional. They have emergency call lights and pendant alerts even for independent residents as part of their services. They have transport available for shopping, doctor appointments, and excursions. They have a fairly decent activities schedule. So I can be as active as I like. All utilities are included including cable television and internet. So that will save me money. The advantage of being in town (city) options like delivery services for pharmacy, food, and groceries are available. There are hospitals available and I'll have choices available again.

Last week I talked about self sufficient living in senior care. I talked about this option too with my daughter. She laughed at me and told me they planted fruit trees in the memory care garden area just last week. They were talking about accessible gardening areas for the rest of the open areas around the facilities. The more we talked the more excited both of us got. Being within the city limits I doubt chickens would be allowed, but maybe a quail hutches could be done. It may not be a homestead, but it will be enough for me to piddle around. To get my preserving hat on, I'll have to go to the farmers/flea market, but that's do able also. Where there's a will, there's a way. It's not today or next week, but the option is there when I want it.

Nothing is impossible.

Sunday Stroke Survival: Durable Power of Attorney for Health Care

Do you have a designated person for Power of Attorney for Health Care? You should. I'll tell you why this is important. Who to choose as ideal candidate? I'll give you a few pointers that I used in choosing mine and why I ruled out certain people in my life.

Now a Durable Power of Attorney for Health Care (DPOAHC), although the person selected can do both, it is different than a General Power of Attorney which mainly deals with financial matters and property. This concerns decisions about how you are taken care of if you are unable to make the decisions yourself due to mental status, illness, or near death situations. Without someone to speak to medical personnel are legally obligated to do the best in their power to keep you alive. Many court cases have been filed to end a life long after all hopes of a quality of life is extinguished. Even the state or country has a say in keeping you alive without a DPOAHC.

To date, I have been the DPOAHC for five people. It isn't an easy thing to do when it's your loved one and easier to do the more distant they are from you. I am level headed in all situations. I can look at the whole picture given the facts, and can put another person's desire above my own.

Who to choose...

When you are married. Most likely this is your choice for a DPOAHC. Some reasons you might not want your spouse to decide. If you can't trust your spouse to follow through with your desires. Their emotional state is in question. Going against your desire to keep you alive and with them overrides your wishes to pull the plug so to speak.

A prime example, I was my mother's DPOAHC. When her time was neared, she went into severe respiratory distress at her doctor's office. She was transported to the ER. I made sure they had a copy of her DNR and my DPOAHC long before she reached this point. It didn't hurt that they had previously worked with all of them also. In the ER, my father, with tears in his eyes, begged me to let them do something. The ER staff looked to me for directions not my father. I shook my head no. She didn't want that. I held firm. Care and comfort only. I'd seen the x-ray of her chest done before I arrived. She had quarter sized pieces of lung tissue not affected by her cancer. Oxygen and an IV was all I would allow knowing it would be only a day or two at best that she would live. But, still my father begged me to let them do more. It's all she wanted. My father, even though he was her spouse, would not have been a good DPOAHC for her.

Keep in mind that inmost states in the US, the husband has this decision to make for you unless you designate someone else. Even if you are estranged, separated, or divorced. The same goes for your next of kin in case your spouse is deceased. While I'm thinking about it, who is your emergency contact in your wallet? Insurance policy(auto, home, bank, medical, life)? This may be the person contacted if immediate decisions are needed.

You should check and/or change this periodically. I recently did this after my husband died. I even found some spots where I listed my father as an emergency contact. My father is imfirmed and suffers from rapid onset Alzheimer. There's no way he could make any decisions for me.

You sure don't want an enemy to make these decisions for you. Don't have any trusted friends or family? Choose your attorney. If your attorney goes out of business or retires, hire a new one pronto.

When choosing mine, I had a few choices. I weighed the pros and cons of each closest family members. I mean I've known them in good times and in bad all theirs or my life, right? I also have a very large pool to pick from (4 generations) It was a good place to start. I decided on two. You can have more than one. If one isn't available, the other can step in. My choices are my one of my adopted sisters and my #2 daughter.

The reasons for my choice are many, but most important is both understand and will do want I want. Both are medically trained and have Hospice experience. They have the ability to step outside the  situation (family) and make logical choices. They weigh options and outcomes. It doesn't matter if we are at odds, they will still abide by my wishes no matter what.

The fact of the matter is, right now, I have the time and energy to devote to this decision. Now, is the best time to make this decision without pressure. I can think logically and sort through the pros and cons of candidates. Nobody likes planning for their own death. I'm really not planning it by doing this now. I'm choosing my quality of life. I've got the time to hash out exactly how I want to continue living.

Even though my DPOAHC know my wishes, it is also spelled out on the legally binding form that was witnessed and notarized. I actually  had four copies notarized: one for each DPOAHC designee and two for me. One of the copies I carry with me always, and the other sits in a file folder with all my important papers. I want to make sure my wishes are known.

Have back-ups to your back-ups.

Depending on your state, you can define how you exit this earth. You've got some decisions to make also. A Do Not Resuscitate (DNR) means no CPR. Whether or not you want fluids and/or nutrition is another consideration. Whether you want mechanical life support or what is known as care and comfort only. If placed on a ventilator under what conditions should it be turned off? All these are  decisions that need to be addressed in your DPOAHC document and discussed at length with your designee(s). Georgia is not a right to die state. This is the closest I can come to it legally.

Hopefully, you will never need this document, but if you do...better to take the time to do it now. But living post stroke with aphasia. it just makes sense. Plus, I'm looking at hours under the knife in the near future. If I hadn't made these decisions years ago, I'd make it now.

Nothing is impossible.

Sunday Stroke Surivival ~Is Everybody on the Same Page?

Happy Easter, y'all! It's a beautiful Resurrection day full of hope and promise.

I got to thinking about while hopping from doctors and therapy...is everybody on the same page in your care plan? What happens in an emergency? Are they really prepared? Are they armed with the proper information?

For instance, I know mine are because I carry a printed sheet with me at all times for me and my husband. What's on this sheet, you may ask and I'll tell.

• Full legal name
• Date of birth
• List of medications
• List of allergies- drugs and others
• List of doctors, their specialty, with phone #s and addresses
• Current medical conditions
• Past medical conditions and surgeries
• Locations where copies of Durable Power of Attorney for Health Care, living wills, DNR are on file, and emergency contacts.If not carried. I had my husband sign two copies while being notarized.
• Shrink it down and laminate it if possible.

 I take these sheets with me to all my doctors and update as necessary. In  case of an emergency, the emergency team has access to information they might need to save your life. I wear an Medic-Alert necklace and had engraved on it, "check pocket for list."

I never keep it in a purse. It's always in my pocket and I'll tell you why. Think about a bad car accident scene. Everything is thrown all over the place. I want whoever needs this information to find it and save my life not search for my purse. If I end up in the water, it's laminated. No ink running everywhere making it unreadable.

When time is of the essence and minutes count in whether you live or die, this is very important. Even if it isn't a case of an emergency, everyone is on the same page including me. I even gave a copy of my info packet to my Podiatrist! He might never use it or need it, but if he does he'll have it.

A case in point. My mother had a routine visit to her family practice doctor. She went into respiratory arrest. Granted, he knew she had a DNR (do not resuscitate) order, but if he didn't have a copy or my father didn't, by law, he'd have to try and bring her back. No matter that she was eaten up with cancer. It covers his butt until the paperwork presented itself.

Another case in point. My husband cannot be injected with adrenaline without a heart team standing by. His cancer forms tumors throughout his body comprised of adrenal tissue. You give him adrenaline and it's like stomping your foot on the gas pedal of your car during rush hour. A very bad idea. His whole endocrine system goes into warp drive. Think of it as twenty-six adrenal glands instead of just one. Fun, huh? But this is important information the treating team needs to know.

Having worked as an RN/Paramedic in both ambulances and life flight helicopters, I can't tell you how many times I wished I had this information available. I still realize the importance after almost thirty years of not being in the field.

Another thing to think about and do. Arrange for copies of the above paperwork are kept on file in your charts or in the database at all your doctors' offices, EMS, and hospitals. Most will give you a card on where to locate the file with that information. You won't always be where you can get to these items in an emergency. Otherwise it wouldn't be an emergency, would it? Think about it as your emergency kit and don't leave home without it.

Remember, in an emergency or other times...

• You may not always be able to speak for yourself or your spouse.
• You may not remember and forget something vital
• If someone questioned your authority to speak on behalf of the patient.

A word or two about the last one. Since HIPAA came into effect, everyone questions everything. I ran into an issue with this while I was hospitalize after my stroke. I am my husband's DPOAHC (durable power of attorney for health care) and his general power of attorney.

There I was stuck seventy plus miles from home, and my husband needed a prescription for morphine. It does no good for my husband to call the doctor, he can't hear to answer questions by telephone. Our daughter tried talking to the nurse as me. I know illegal as all get out, but this was a desperation move. The nurse caught her and even though she understood the situation they had to hear the request from my husband or myself. She ended up putting him in the car, driving to the doctor's office with him, and getting the prescription. She then ran into the same situation at the pharmacy. Morphine is a controlled substance.

I just never thought about this situation before. I've since remedied this by placing all four of my daughters on a separate DPOAHC for both of us. Not to supersede mine but in case of emergency when I'm not available. Have you thought about if anything happened to you who would take over in your absence?

My #2 daughter held up her power of attorney and laughed a maniacal chuckle, "I can pull the plug now. You're in my hands!"

She's always the comedian and not that we would have expected anything less from her after such a serious conversation. She sent me this card afterwards to carry on the laughter. It's so true.

 But we do know she'll abide by our wishes also. All of them will. Your choice of whom you choose is important and not to be bestowed lightly. This is a decision of total trust. 

This blog has very little to do with stroke recovery, but is important. If you haven't thought about it, do. The clock is ticking. If you're all set, then hunky-dorry it's time for some fun! Party time. Let's do the Hockey Pokey. You put your right foot in...