Decisions, frontotemporal decisions……..


DNR2

One of the best things you can do when you first see the symptoms of any cognitive change (or preferably before that)  is to sit down with your loved one and have them write exactly what their wishes are. One piece of paper can save you from a world of hurt down the line.

Your love will be tested enough.

Have the dreaded discussion.  If you don’t, even if you know what they would want, when it gets to the time when they can no longer make those decisions for themselves, there are a million (well a lot anyway) legal and moral hoops to jump through. The hoops are mostly made of ‘red tape’. But not having the right paperwork will seriously inhibit your ability to take care of your loved one’s best interests.

Some of the written information may not be official paperwork. It may be just a handwritten summary of what they would like to happen. But at least you will know. At least you will be armed with their choices, their decisions. And not be forced into making them yourself.

Especially at a time when you feel least able to make them.

Having been a nurse for many years before the onset of my husband’s FTD did not help at all let me tell you. Having medical knowledge just makes you more angry at the morons (I’m sorry, I did think that sometimes) who purport to care for your loved one. Obviously they’re not all morons. Quite the contrary. The people who took care of my husband for the last four months of his life did a far better job than I ever could. They were wonderful. As the old saying goes “You have to kiss a few frogs before you get your prince”

Same principle, applied to caregivers. Unfortunately you don’t always have that much time to kiss the frogs. Or appease the morons. Even being in ‘the system’ did not help me. The minefield of decisions was just as terrifying for me. Even with my inside knowledge.

Often before you find the great place for your loved one to end his/her days, you will endure 101 requests for those vital pieces of paper. For example, before they can be admitted to any kind of facility for psychiatric evaluation you will need at least 3 copies of each. Pretty much every person you speak with will want to see them. Especially the Medical Power of Attorney. I thought it might be helpful to have a glossary of the various terms and paperwork that you will need to give you the power you need (no pun intended).

So here it is…….

Last Will and Testament.

I’m sure that you all know what this means, but I just want to make sure that you understand that this is most definitely NOT the same thing as a Living Will or Advance Directive. The Will is generally about documenting wishes in regard to belongings and property.

Advance Directives  are written instructions that document a person’s wishes in the event that they are unable to make decisions for themselves.

Advance Directives include:

Advance Directive umbrellaPower of Attorney (POA) – this is the document that your loved one signs to say that, in the event of them being incapable of making their own decisions about their life, a designated person (usually the spouse or children or a close friend) has the authority to do so. The Power can be “Durable” –  meaning it  gives the designated family member of friend the power to advocate for the patient, or limited to a specific aspect such as Financial or Healthcare/Medical. In the United States, there may be variances according to State Law. For example, in Arizona, Healthcare (Medical) Power of Attorney must include Mental Health on a separate document. Good to know in relation to dementia.

Even with a signed Mental Health Power of Attorney, I still had to have my husband’s physician sign paperwork to say that he was not competent to make his own decisions before an in-patient psychiatric facility would admit him.

The Durable Power of Attorney gives the authority to make decisions, but does not specify what those decisions should be. Holding Power of Attorney may not give specific rights to a spouse or child if it does not include a Living Will or other Advance Directive. The Medical Power of Attorney and Financial Power of Attorney can be different people. Even if you’re not hugely rich, you need a Will and some Advance Directives, just so everyone knows what to do.

P.O.L.S.T (Physician Orders for Life Sustaining Treatment)

The POLST form is a set of medical orders, similar to a DNR order.  POLST is not an advance directive.  POLST does not substitute for naming a health care agent or durable power of attorney for health care. It results from considered, shared discussions with the doctor, family, spouse, other caregivers, and sometimes the patient to ensure that their medical wishes are clear to all concerned. It takes into account the personal desires of the patient, including religious values, beliefs and goals for their remaining life. This shared decision-making ensures clear and unambiguous care.

POLST  is for seriously ill or frail patients for whom their physicians would not be surprised if they died in the next year. POLST is not for everyone, it is not a Living Will per se. What the POLST does is give direction – doctor’s orders,  to health care providers – EMT’s, paramedics, ER doctors and nurses, in the event that your loved one ends up in an ambulance or the emergency room.

Click here to find forms for your state

Guardianship

If there is no POA – especially for Mental Health, in place at the time a person becomes declared incompetent, you may need to apply to the court to gain the Power of Attorney you need to access your loved one’s funds, healthcare records and make decisions that they are now unable to make. The guardianship process  can be long and drawn out and cost quite a lot. You will need to use a lawyer to help you through the process. Again, there are differences from state to state. When completed, you effectively become the guardian and advocate of your loved one’s interests.

The court will decide if you are fit to do so. So isn’t it better for your loved one to decide first? You can’t assume that it will automatically be conferred on to the spouse or next of kin. If there is no family available, the court will appoint their own Guardian to advocate for the person.

Living Will

Living WillThis is an Advance Directive that specifies a person’s wishes in the event of a catastrophe that causes that person to be unable to make healthcare decisions. This includes a traumatic event – heart attack, stroke, or in our case, a debilitating illness affecting the mind. Even people who are not sick should have one of these. There is less ambiguity when it comes to the various family members agreeing (or often, disagreeing) on for example, a feeding tube, CPR or other life-saving procedures. If everyone knows what you want, there can be no ambiguity. In extreme cases, if it comes down to “pulling the plug” (sorry, that’s a horrible phrase, but one recognized by everyone) – if it is written and signed by the unconscious or incompetent person, then there should be no arguing among the family about whether it should be done or not.

As you move forward into FTD, it will become very clear that your loved one absolutely cannot make financial or medical decisions (or even what they’re eating for lunch today) by themselves. You will have some tough choices to make. You will have to stand your ground and advocate for them. It will be so much easier if they have done it for you.

DNR (Do Not Resuscitate)DNR

The Living Will should specify exactly what, if any, life-saving measures be taken in the events described above. DNR means that the person will be treated only to ensure a comfortable, natural death, without heroic intervention to prolong it.

Life saving/preserving measures include:

Resuscitation (CPR)Resuscitation

This is when the medical staff will attempt to restart  the heart when it has stopped beating (cardiac death). It includes chest compressions (someone rapidly pushing down on the heart firmly through the chest wall), ‘bagging’ – air being pushed into the lungs manually via a mask over the face and probable defibrillation – an electric shock delivered by a device to stimulate the heart back into action. It’s not pretty. And the outcome is not guaranteed.

Even in a hospital setting, with a witnessed event,  the chances of surviving are quite small. If there are more than about three minutes between the cardiac arrest and the start of resuscitation, there is a greater chance of brain death due to lack of oxygen.

Mechanical ventilation

  • A machine that takes over your breathing if you’re unable to do so. This involves the insertion of a plastic tube through the mouth down into the lungs (intubation) You may hear this called an “ET tube”. This is the machine that is referred to when you hear TV reporters and newspapers talk about “Pulling the plug” The ventilator pushes air into the lungs at a prescribed rate and pressure. It is only used when the person is unable to breathe for themselves. While intubated, the person is usually sedated as they are unable to speak and they are often restrained – tied at the wrists –  to counteract the natural instinct to pull out the tube. Some people don’t realize that it is the machine keeping the person alive and not the person themselves. For example, there is a case in the news right now about a thirteen-year old girl who is brain dead, but because her heart is beating, her parents are convinced she is alive. She has no brain activity to tell her heart to beat. The machine is keeping her “alive”.

Nutritional and hydration assistance.

  • Fluids and or food can be infused intravenously or via a tube inserted into the stomach. The tube can be inserted via the nose (NG tube) or through the wall of the abdomen (PEG tube). In FTD, this may be suggested to you when your loved one’s swallowing becomes more difficult and eventually goes away altogether. As the swallow reflex disappears, there is a chance of aspiration – the food or fluid gets inhaled into the lungs instead of being swallowed down the esophagus into the stomach. Obviously, this is not good. The resulting ‘foreign body’ in the lungs can cause an infection – pneumonia. Then you will have another decision to make. Antibiotics or not?

Dialysis

  • This is a process that removes waste from the blood and manages fluid levels if the kidneys no longer function. If your loved one can’t remember or doesn’t want to drink or eat, they may become dehydrated and have some kidney failure. Dialysis involves the permanent insertion of a two-way intravenous catheter. One side for removing the blood and one for putting the clean blood back in. Dialysis takes about 3-4 hours, 3 times a week, attached to the machine that pulls out and pushes back the blood.

I’m not trying to scare anyone, but clearly, all of these procedures and processes require a great deal of forethought. Going through any of them for a person with FTD would be quite horrifying in my mind.

If people ever asked me about my husband’s DNR status, I would always say – “If we resuscitated him what would we be saving him for? More of the same? Worse?

If I’m very honest, I would have to say that my husband would definitely have preferred having a heart attack and being dead to suffering as he did for five years and then being dead anyway.

One other thing I would like to tell you that many people don’t know is to check your loved one’s life insurance policy. I found out that I had been paying premiums on my husband’s policy for two years and there was a premium waiver clause in the case of terminal illness. I only found out because I was looking for another clause – an accelerated death benefit.

The insurance company did refund the premiums I had paid since the time he was diagnosed.  I just had to send them a letter from his neurologist with the diagnosis and prognosis. Interesting that they had denied increasing his death benefit about a year before, due to his diagnosis but never told me about the premium waiver!

The accelerated death benefit can pay you part or the entire death benefit for documented terminal illness ahead of time. Good to know. Worth checking into.

There is also something called a “viatical settlement” in which you can sell part of the anticipated death benefit of the life policy to another company in return for cash, which you may well need now rather than in the future, to help with medical or caring costs.

You may also want to consider organ donation if your loved one is physically fit and healthy. Or think about donating the brain for research which could help to find out more about the bastard disease and find treatment and cure more quickly.

So there it is. Some things to think about. Rather a lot really.  It can seem quite overwhelming. Yu should also be sure to have your own set of Advance Directives, in the event that something happens to you before your loved one.

But do it sooner rather than later. You need to protect yourself and your loved one. No-one likes to think about it . Some people think it’s morbid.

It’s not morbid. It’s loving, caring and sensible.

Love drop

7 thoughts on “Decisions, frontotemporal decisions……..

  1. Well done. There’s an awful lot of work gone into this post. These are things many people find it very hard to talk about and get done, but having done them there is some peace of mind and an awful lot less hassle down the line.

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    1. Thank you Hilary! It is most certainly better to do it as early as possible becauses later, when things get tricky, it is one less thing to do. Thanks for sticking with me 🙂

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  2. Thank you Deborah, I have printed this blog so that can I think about other ways that I have been helped. My intialial comments are: In respect of a Living Will – I don’t want to do one because I would prefer my well-balanced & well-loved daughters to make the best decision about my care at the time – depending on what the situation might be. I am thankful that I asked my husband when he was still relatively rational where he wanted his ashes to be buried because my daughters and I had already discussed where to scatter them & his wishes were different! To spouses – learn what you don’t know/understand/feel confident about whilst you can still communicate; for example, how to manage the money, do DIY & household chores, drive the car confidently. I was confident about most aspects of running our lives but needed to pluck up courage to handle the power drill!

    I am also a trained nurse (although many years ago) and so far I have found my knowledge very helpful. For example, I had never heard of FTD before but my medical skills allowed me to research and understand the disorder to quite a deep level and I don’t feel frightened (yet) about dealing with whatever is facing me. But who knows that might change.

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    1. Great points Toni – thanks. You are right about learning to do things that you perhaps have never had to tackle before. I have always been quite independent, but the hardest thing for me was not so much learning to do things, but learning to make choices alone. Those things for which I had always had a partner – sometimes big things like refinancing our mortgage, or smaller ones like choosing a new couch.
      I love hearing your perspective – thanks!

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      1. Deborah – You have spent alot of time on your blog. Just found it today, since this has been a bad week for my wife and I’m curious how much worse it gets. We received the diagnosis in 2007, I believe the same as you, my wife has FTD PPA. Researched it and never believed this could play out like this. But it has, and my wife is Mute now. All parts of any planning or decision making are gone, so I know how you feel when you say making choices alone – big and small. I agree with you to get everything in order right away while they can still decide on their own. Another good tip is to go to an Office Depot or similar and get a signature stamp made while they can still write. Most places except it.

        I still am working, luckily from home, so hope to read more of your blog soon. Now it is back to work.

        Enjoy the day,
        Greg

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      2. Hi Greg, so sorry to meet you under such horrid circumstances. Yes my husband was initially diagnosed with PPA, which progressed to the right side of his brain leading to behavioral issues later. A late PET scan also revealed early Alzheimer’s, but I think it was just a progression of the degeneration that travelled around his brain in a clockwise fashion. In 2011, I had to move him into care, because he was becoming more aggressive and violent at home and it was not safe for either of us. That was one of the hardest things I had to do. After that, he only lived for 9 months. It was 5 years in total from diagnosis to his death in 2012. I really feel your pain; watching someone you love disappear is just soul-destroying. I look forward to keeping in touch with you. I am also an administrator on a Facebook page – “Frontotemporal Dementia Information and Support”. It’s a great group of people who are all going through similar experiences and are very honest and willing to share. There is also a prevailing sense of humor, which, I am sure you’ll agree is vital in getting through this terrible experience. I hope you will join us. I wish you a peaceful weekend.
        Debbie

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