DNR - Do Not Resuscitate

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.

               

Stage 7 Alzheimer’s Disease - Caregiver Response

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!

               

Civil rights for Alzheimer’s patients

Do Alzheimer’s patients have civil rights? Of course, they do. But what are they? How do they get them? In the area of civil rights, they are under a double or triple cloud. Last month the Alzheimer’s Society in the UK issued a new report about abuses of Alzheimer’s patients.

Why do Alzheimer’s patients have trouble getting their civil rights? First, they are vulnerable and powerless. You can’t stage a protest march when you’re in a wheelchair and need someone to push it. You can’t organize a boycott when you no longer pay your own bills. You can’t give impassioned speeches if you can’t organize your thoughts. And a disproportionate number of people with dementia are African American or Hispanic, since those groups have a disproportionate amount of stroke, high blood pressure, and diabetes.

Second, nobody really wants to give full rights to mentally handicapped people. My grandmother was never declared mentally incompetent, and I was never declared her legal guardian, but I had no trouble signing for her or getting access to her personal information from people who were supposed to be protecting it. Why? How? Because I told them that she had Alzheimer’s and that was all they needed to know. That was fine for me and her, because she wanted me to handle her affairs, and I would never take advantage of her. But in a system where nobody questioned her DNR (Do Not Resuscitate) wristband, it was not safe to grant full rights over her to a disinterested professional because they insisted they wanted what’s best for her. She lived happily for two more years after that incident - she was not exactly on her last breath.

Third, we don’t really know how to give civil rights to Alzheimer’s patients. If someone can’t communicate their wishes, it’s difficult to follow their wishes. If someone gets violently frustrated when she has to make a decision, to give her too many decisions is not compassionate. Mental disabilities are a difficult legal challenge.

But that doesn’t mean we shouldn’t try to preserve the human rights of Alzheimer’s patients. Health Professions Press is one group who has published an Alzheimer’s Bill of Rights. The issues are not all that different from those faced by other groups in our society. People are prejudiced against them, and feel justified in doing so. When they can still work, they have trouble getting work. When work becomes difficult, they have trouble receiving the accommodations they need to keep working.

In the United States and elsewhere, of course, this is all illegal. The Americans with Disabilities Act prohibits discrimination on the basis of a disease. And I’m sure that some employers don’t discriminate. If some workers with Alzheimer’s disease must have all their instructions in writing because they forget easily, some employers provide all their instructions in writing.

But I’m not naive enough to believe that happens all the time. I heard about an 87-year-old retired cleaning lady who was denied coverage for home health care because she couldn’t provide copies of her rent checks as evidence. Except that, because of Alzheimer’s disease, she could no longer write checks. No, discriminating against a certain class of people is common and easy - people with terminal diseases, which Alzheimer’s is. Because, eventually, these people won’t be able to protest their treatment.

               

Looking into my grandmother’s eyes

I’m not a professional Alzheimer’s caregiver. I’m a grandson. I’ve been recognized for my work in taking care for my grandmother at a home health conference, but I’ve never formally studied the disease. I’ve just studied my grandmother. Through this blog, I’ll be sharing some of what I’ve learned, and what others have learned, about how to face and fight Alzheimer’s disease. My grandmother died in 2006 in her early nineties. We could have done much better for her. You can read more about this blog on our About page.

During the two years that I lived with my 90-year-old grandmother and helped her with her Alzheimer’s, I had to explain her condition to many healthcare workers, respite workers, and well-meaning relatives. I wrote pages and pages of instructions. And what were in those instructions? Of course, I explained her routines and habits, suggesting how to make her feel more comfortable. Like many elderly Alzheimer’s patients, she also suffered from blindness, deafness and arthritis, so she was challenged, as they say.

But what was the most important instruction I longed to give? Just look at her. Don’t look through her. Don’t look past her. Don’t pigeonhole her and walk away. She isn’t just a body in a hospital bed. The accomplishments of her life haven’t vanished just because part of her mind has. She hasn’t stopped being a person worthy of respect.

But usually, even professionals would assume that because she wasn’t saying much, she couldn’t say much. (She wasn’t a morning person anymore.) It didn’t occur to them that maybe the reason she wasn’t answering their questions was because she couldn’t hear them. (She hated wearing her hearing aid.) So they treated her as if she were a comatose invalid instead of a Southern lady who liked to talk about her family and walk around the block.

In other words, they were wrong about her. They weren’t paying enough attention.

The day of her first stroke, which she spent in bed, we noticed that the hospital staff had given her a special wristband, listing all of the life-saving measures that the staff were prohibited from giving her. It included fluids. My uncle politely requested that she not be dehydrated to death, and after a few hours, they brought in an IV. I think she was partly too embarrassed and angry with us for bringing her to the hospital in the first place, so she was holding her tongue. The next day, she was saying, “I’m willing to do anything that’s necessary so I can go home.” They were never sure they could find the brain damage, though she had trouble perceiving things on her left side, so after some rehab, she was back home and doing pretty much what she was doing before. They hadn’t given her enough exercise in the hospital (after all, how much exercise do you expect a 90-year-old lady to need?), so it took a while before she could walk around the block again.

True, if I had walked by her hospital bed on the first day, not knowing her, I might have assumed that she was in a coma or about to die. But I would have been wrong. If my uncle hadn’t intervened, she would have died, sure enough. Most people die when fluids are withheld from them. But who she really was, and what she was capable of doing - that wasn’t visible to the casual observer. Even brain scans couldn’t show that.

One of my favorite lines from C.S. Lewis’ novel That Hideous Strength quotes a university professor, “I happen to think you can’t study people. You can only get to know them.” Since Alzheimer’s is a disease, doctors think they know something about it. But it centers on the human mind, and nobody really knows much about that.