DNR – Do Not Resuscitate

April 29, 2008 by  
Filed under ALZHEIMER'S

Do Not Resuscitate (DNR)

It sounds so final. 

It sounds cruel.

It sounds like death.

Do not resuscitate (DNR) order is a part of advanced medical directives allowed by federal law passed in 1991, expanding the notion of patient autonomy to situations in which they may not be able to make crucial medical decisions due to incapacitation. It instructs medical personnel not to perform life-saving cardiopulmonary resuscitation (CPR) or other procedures to restart the heart or breathing once they have ceased. By law, the DNR directive must be offered as an option to patients by health providers in, and in some states, out of a hospital setting. Once signed, the DNR directive must be placed in the in the patient’s chart. (Encyclopedia of Surgery: A guide for Patients and Caregivers)

My true confession; yesterday, I talked about the fact that we fall into the trap of not talking about end of life issues with the hopes that they will just go away.  I understand that quite well.

My mom had a stroke and went directly from the hospital to a long term care facility for rehabilitation.  After it became evident that she would not be returning home, we had to complete paperwork for her to become a permanent resident of the long term care facility.  One of the forms that was to be completed asked what should or should not be done in case of heart failure.  In short, they wanted to know if they were to perform.  The core question was resuscitate or let her….die?

I slipped the form out of pile of papers, hoping that they wouldn’t notice.  I knew what I thought was the right thing to do, but I couldn’t bring myself to do it.  So, I put my proverbial hands over my ears and went along my merry way.  A couple of days later, I got a call advising me that they needed the form.  Honestly, I avoided them for about another week, but they wouldn’t let it go.  Finally, I completed the form and returned it.  I felt sick.  I felt like had, in essence, signed my mother’s life away…literally. I cried for days….

It’s a personal decision, so I won’t tell you what you should or should not do.  What I will say, is that you have to at least think about it. If your loved one has not already made a decision regarding this important issue, then you, as the caregiver, must at least give it some attention.  And believe me; it’s better to think about it in “good” times.  It’s much more difficult and complicated when you are in an emergency room, hospital room or long term care facility with medical personnel on one side and family members on the other all looking to you for a decision.

So, don’t ignore this difficult issue.  Ignoring it isn’t going to help the situation, nor will it just go away.  So, take time now, friend. Think about, ponder and consider this very difficult decision.

Advanced Directives and Living Wills

April 28, 2008 by  
Filed under ALZHEIMER'S

When we were kids, we used to put our hands over our ears and hum loudly or say, “I can’t hear you.”  It was our way of telling the other child who was speaking that we were not interested in, and would not listen to whatever they had to say. 

Then there’s my youngest son.  He covers his face with his favorite blanket.  That’s his way of “hiding.”  He figures, if he can’t see me, then I can’t see him.

What’s the point?  I’m glad you asked.

The point is that, we adults do the very same thing. We act as if not talking about end of life issues will keep us from having to deal with them.  We put our proverbial hands over our ears or blankets over our heads as if to declare, “I can’t hear it and I can’t see it, so it must not be. “

This is a sensitive subject for me, as neither of my parents made their wishes clear.  Neither had living wills or Advanced Directives.  So, I was forced to make some very difficult decisions in both cases.

When it hits you that you have very little time with someone you love very much, the last thing you need to layer onto that very difficult time is more questions.  Especially questions that can, at least to some degree, be handled in advance.

Making a decision now will help to keep peace.  Grief impacts everyone differently.  Some people would rather have their loved ones alive no matter what.  Others can’t bear to see them suffer. Take that burden off of them. Make your wishes known, in writing.

What is an Advanced Directive?

An advanced directive is simply giving directions (in advance) regarding end of life issues.  Thinking about the end of life BEFORE it comes.  Advanced directives can be verbal.  Certainly not the best, but it does make the decision making process a little easier if someone can remember what a person said.  A Living Will is the best.  Click here for a sample of a living will.  It’s a written, legal document that explains your wishes regarding tube feeding, dialysis, invasive procedures, living for an extended period of time on a respirator, etc.  I’ll discuss Do Not Resuscitate (DNR) orders in a seperate post.

So, whether or not you have Alzheimer’s disease, whether you are sick or healthy, do yourself and the loved ones in your life a favor.  Take your hands off your ears and the blanket from over your head.  Please, do a living will and encourage your loved ones to do it too.

Stage 7 Alzheimer’s Disease – Caregiver Response

April 3, 2008 by  
Filed under ALZHEIMER'S

I have been sort of avoiding writing this post.  As I have described each stage of Alzheimer’s disease, I can remember my mother and how she declined through the stages.  I can remember the anxiety and fear that each stage brought (for me).  I can remember feeling sick in my gut as I realized that she was coming to the end.  I recall wondering, how will it actually happen?  How long does this stage last?  How will she actually die and more importantly, how will I possibly live without my favorite girl in the whole wide world.  Well, that answer is for another post at another time, but for now, I have to talk with you about stage seven, the final stage of Alzheimer’s disease.  I have to tell you what will happen while your loved one still lives.  To say that stage seven is difficult is like saying that gas prices are a little high, it’s a gross understatement.

Stage 7

Your loved one won’t do much wandering in this stage because, in the early part of this stage, she won’t be able to walk without assistance.  As time goes on, she won’t be able to walk at all.  Then she’ll lose the ability to sit without support.  She may not be able to hold her head up.  As these changes occur, you’ll notice that there is very little interaction with the outside world.  She will have gone from inappropriate responses to the world around her to no responses at all.  The muscles may get rigid and the reflexes are not working properly.  As this occurs, grandma may not smile anymore.  Her facial expression is blank for the most part.   Swallowing becomes very difficult, there may be lots of drooling and if there is speech, it’s unintelligible.  By this time, your loved one is experiencing urinary and fecal incontinence and is totally dependent on someone else for care.

Caregiver Response

Totally dependent.  Let those words sink in.  At this stage of the battle against Alzheimer’s disease, your loved one needs complete, round the clock care for everything.  If it happens to or for your loved one, it’s because you or someone else is doing it.  Let me be clear here.  You or your designee will be responsible for feeding, bathing, dressing, diaper changes and grooming.  Your loved one has officially gone from your parent, grandparent, aunt, uncle to your baby and it’s painful.  So, take time to grieve the loss that is occurring. 

If your loved one is still at home, you might be considering a long term care facility.  On the other hand, you might be digging in thinking, “I’ve made it this long, and I’m seeing it through to the end.”  Don’t dig in your heels, “just because.”  Remember, you are in a position of trust and honor.  So, do what is BEST for all involved.  Maybe that’s keeping grandma at home, maybe it isn’t.  Just be willing to consider your options.  There is value in transferring the day to day work of caregiving to someone else, so that you can spend your time just being there with your loved one.  It may seem as if he or she has not a clue what is going on, but who knows for sure?

Think about the hard question. If grandma has a heart attack or needs surgery for a blood clot or something of the sort, what are you going to do?  Is there an advance directive in place?  What about a Do Not Resuscitate (DNR) order?  If not, you will more than likely have to determine how much care and intervention you want to do in case of a medical emergency.  I would not DARE tell you what to do; I will say that it’s better to consider your options before you have to make such a decision.

Finally, TOUCH your loved one. She may not be able to understand your words. He may not know who you are, but many people are comforted by a gentle and loving touch. Brush her hair, or give her a back rub.  Stroke his forehead or hold his hand.  Remember the good times and enjoy the time you have now.

Tomorrow:  Caregiver’s Corner!

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NOTE: The contents in this blog are for informational purposes only, and should not be construed as medical advice, diagnosis, treatment or a substitute for professional care. Always seek the advice of your physician or other qualified health professional before making changes to any existing treatment or program. Some of the information presented in this blog may already be out of date.