Thursday, June 25, 2015

How To Decide On Your Loved Ones' End-of-Life Care

By Felicity Dryer

Deciding on end-of-life care is one of the most important decisions you can make, and there are many factors that go into it, like:
      How much care is needed?
      How much care can you afford?
      How involved do you want to be?
      Where is the care going to happen?
      Are there any pre-existing directives for care?

All of these are outstanding questions, but they can also be a little intimidating to answer. Today, I’m going to walk you through the process of answering these questions and ultimately making a decision you’ll be happy with.

How Much Care Is Needed?

There’s no point in worrying about the care itself until you know how much of it you need - a senior who only needs a few pills each week probably doesn’t need a live-in assistant! Unfortunately, this question is difficult to answer because none of us know how much care we’re actually going to need in the last decade or two of our life.

As such, the best thing to do is talk to your doctor each time there’s a major change in your loved one’s condition and ask about the kind of help and care they’ll need. Once you know how much care is needed, you can start focusing on the other questions.

How Much Care Can You Afford?

Not every household can afford the very best in medical treatments - but families often find themselves on the hook for payments if their normal claims are denied. Cost is a real factor in end-of-life care decisions, but it doesn’t have to be as frightening as you think, especially when you know how to keep things on a budget.

Once you know what you need, you can start looking to see how much it costs - and check to see if there are alternative payments or more affordable alternatives. For example, a permanent live-in caregiver could be quite costly, but someone who only visits for an hour or two every Monday, Wednesday, and Friday could be far easier to fit into your budget.

The most important thing is getting the care your loved ones actually need - and with a little bit of training, chances are you can give most of that care yourself if necessary.

How Involved Do You Want To Be?

The advice I’ve just given assumes that you want to be involved in caring for your loved ones as they continue to age - but that’s not true for every family. Some people honestly don’t want to see the ravages of problems like disease and dementia, preferring to only create happy memories.

This is a personal decision, and there are no right or wrong answers. However, you should keep in mind that the more you’re willing to do yourself, the less the care is likely to cost you. You can also split the care between several members of your family - if each of you visits on a different day of the week, you could provide steady and regular care without the stress of doing it yourself every single day.

Where Is The Care Going To Happen?

The answer to this question is dictated mainly by the answers to the three above it. Some types of health care require being in a hospital or other long-term care facility, while others can easily be administered at home with little or no trouble. It’s worth noting that as seniors continue to age, they’re more likely to need permanent supervision of some kind - even if you’re willing to live with them for now, you may want to have a plan for transferring them to a nursing home or other facility at some point.

Are There Any Pre-Existing Directives For Care?

In a way, this is the most important question to ask - because some people don’t want extra care. They may not want to be kept on life support, or continue to stick around if they’re completely bedridden and rapidly going downhill anyway. This is especially true if they’re in a great deal of pain.

It’s best to follow these advance decisions as much as possible. This allows your loved ones to stay in control of their medical decisions - and allows you to know that even if their minds are fading now, they’d be happy that you did what they asked. However, remember that they may change their minds as they continue to age, and that they’re allowed to do so as long as they remain legally competent to make their own decisions. Consider revisiting their advance decisions annually to see if there are any changes they’d like to see made - and stay informed about the rules and regulations for advance directives.

Originally born in Flagstaff, Arizona, Felicity Dryer was raised by her parents (more or less modern-day hippies) to always make her health a top priority. She moved to Los Angeles to pursue her career as a freelance health writer, and continues to help those seeking encouragement to keep moving forward to achieve their goals.

Thanks Felicity!

Thursday, April 16, 2015

National Healthcare Decisions Day

It's only fitting yesterday was Tax Day and today we need to talk about Dying. The only two guarantees in life: Death and Taxes. National Healthcare Decisions Day is hugely important to each of us not only for our own decisions but for our friends and family as well.

I recently participated in a Blog Carnival on my nursing blog about End-Of-Life Decisions. It's a wonderful conglomeration of experiences from a variety of nurses and from many different points of view. You might be well served to check these out as it's obvious even nurses struggle with discussing death and dying. My blog post talks to the point that these decisions empower us. 

As nurses, we've seen it from many points of view as the loved ones, the friends, and from the healthcare professional vantage point. We've seen our own families and friends struggle to make heart wrenching decisions when their loved ones did not tell them their wishes, and had to support others deal with the decisions their loved ones did make that don't always make sense in the moment.

As nurses we've also seen families fight amongst themselves over which way to proceed once it becomes clear the person isn't going to recover from the event or illness. One thing comes through loud and clear is that when the patient has not made decisions and has not discussed wishes even on a very hypothetical basis, it's even harder to have to make decisions for them. And when no one person or persons is made the DPOAHC (durable power of attorney for health care), families can completely destruct over who's making the decision and why? All this at a time when they need the love and support of each other.

Caution: Graphic Explanation Follows
A common conversation among nurses is often, "where shall I tattoo NO CPR? On my forehead or my chest?" Let's get some facts straight. Resuscitation is painful both physically and emotionally!! And the pain can last for a very long time and hinder any possible recovery. Ribs can easily be broken and organs punctured which complicate the process. Even without that possibility, it's painful to have a 200+ pound paramedic pouncing on your chest for any length of time! Using paddles to shock the body sends a painful electrical shock wave through your whole body.

And there are risks depending on how long the patient has been "down" prior to the CPR as well as the effectiveness of the CPR to circulate blood and oxygen to the brain and vital organs. What will the outcome be if the patient is brought back? Will there be tubes needed? A ventilator to support breathing? What extent of brain damage has been done? Has the heart suffered major damage? How will all of this affect the quality of life? Will there be anger or regrets?

What if I Want Everything Done?
YES, you and your loved ones have every right to demand that everything possible be done under any circumstances. And those decisions have to be honored as much as any other end-of-life decision. They can be faith based, fear based, ignorance based as well as based on your own desire to live forever. But they need to be made known to your loved ones and healthcare team as much as any other take on the subject to ensure they are followed.

On the other hand, if you do NOT wish to have heroic measures taken, you have the right to have those wishes followed as well. Advance Directives can be made as specific and complex as you desire. Or they can be vague and give your proxy to your an agent of your choosing to make the best decision based on the situation at hand.

These decisions need to be made and discussed with your loved ones LONG BEFORE there is a need to implement them. This is not just for those who are old or are in poor health. If you got hit by a bus crossing the street and complications set in, what path do you want your health care team to take?  And is your family prepared to comply with your wishes? Have that discussion with your loved ones Today. Make informed choices. There are NO right or wrong answers, but the questions and options need to be discussed.

Further Reading:
Today's the Day to Talk About How You Want to Die
Advanced Care Planning Resources
End of Life: Helping with Comfort and Care

Friday, January 30, 2015

TRAYBL the Perfect Addition to Your Wheelchair or Walker

Have you ever wished you could have just a little pace to put things on your walker or wheelchair so they don't have to be in your lap and falling off all the time?

Well a nurse I know (through Facebook) has invented and patented a fabulous idea called the TRAYBL. It has multiple uses from medical equipment to outdoor furniture.

I have one of those handy baskets attached to my mom's walker, but there have been so many times I wished we had a surface to set things down on that wasn't the bottom of that basket. This item will be ideal!

Check out the Facebook page and purchase from the website: From Damron-Harrell Technologies, LLC.

Thursday, January 22, 2015

Wondering If There's an Alzheimer's Epidemic?

We hear so much about Alzheimer's disease and dementia these days, could it be an epidemic or just information overload? Here's a great graphic with facts you may need to know.

Is There An Alzheimer’s Epidemic? - An Infographic from Bluebird Care
Embedded from Bluebird Care

Friday, January 16, 2015

Is the TV Always Loud Enough to Hear a Block Away?

One of the more difficult issues in caring for aging loved ones is the loss of hearing. Vision usually declines earlier with a need for bifocals in the 40' or 50's, but hearing can be Ok much longer without noticeable decline. At some point you will begin to notice the TV gets louder and louder. You insist you can hear it a block away! You may also notice that your loved one seems to ignore you when you speak. If you point it out, they accuse you of being mistaken or of speaking so that NO ONE can hear you. "You mumble!!"
Stigma of Hearing Loss
Denial is a huge hurdle to face in dealing with the loss of hearing. Being hard of hearing or deaf still carries a huge stigma for much of this aging generation. And if they do admit it, they dig their heals in about any sort of assistive device such as hearing aids. They just want you to speak louder and turn up the TV!

When you can't hear yourself think for all the noise in the house, it's very frustrating and yet probably too late to make much difference.

Get Hearing Tested Early
If you can get them to an audiologist to test the hearing and even give in to buying hearing aids it may be too late for them to actually work very well. But the sales person won't tell you that. In fact they will keep selling them more expensive yet more sensitive models to try to improve what little "hearing" there is. For some people this will work, but for some it's just another frustration and a device that will be found in a drawer and not in the ears.

These sophisticated devices are very sensitive to moisture and any amount of wax in the ears. Tiny holes quickly become clogged and render the devices useless until they are cleaned. And to do so requires tiny, nimble fingers and a few tiny tools. Not something your average aging loved one can do themselves.

To have the best outcomes, the object is to get the hearing tested early on and make decisions before the brain has time to lose much of it's ability to distinguish and understand sounds. As the hearing declines, the brain compensates by trying to distinguish sounds, but actually begins to lose the ability to recognize certain sounds as words. It just becomes a jumbled group of sounds and syllables that make no sense. Amplifying these jumbled sounds with expensive hearing aids doesn't help the brain recognize words it has long sense forgotten the sound of. It's imperative to do something at the first signs if you want to have the best options.

Don't SHOUT!
When someone can't hear us, our first instinct is to SHOUT, but just as turning the TV up louder and louder, it really doesn't help. All we do again is amplify the jumbled sounds. It is far more effective to reduce any extraneous noise and speak slightly louder, facing the person directly. Enunciate clearly and speak SLOWLY; giving the person time to try to read your lips, and time for the brain to compute the sounds into words.

Change the Pitch
With the TV, if you have the capability of adjusting the treble and bass with internal or external speakers, you may be able to significantly lower the decibel level. Again it's not about hearing the sound so much as being able to distinguish the words. This can be especially helpful when your loved one's favorite TV shows include Downton Abbey, Doc Martin and Call the Midwife. The British repertoire on PBS seem to be some of the worst at mumbling in that tone of voice that sadly cannot be easily distinguished. Raising or lowering the pitch may help this process. You can do this with your own voice as well. Either by speaking in a higher pitch, but not quite Minnie Mouse. Or tuck your chin, take a deep breath and speak in a lower tone. Another possibility is to turn on the Closed Captioning to help them find some of the words to follow the plot without blasting the sound.

Acoustics for hearing speech are improved when there are rugs in the room, padded furniture, and no other conversations or background noises to interfere. Try sitting in a high backed booth in a quiet restaurant. Suddenly your loved one thinks the sound has been turned on! But choose a large noisy place and all they can hear is a conversation 2 tables over and nothing from the person shouting directly in to their hearing aid.

Written Communication Works!
When all else fails, be sure to have pads of paper handy, or a white board or chalk board. They can still read. And unless dementia has also set in, they should be able to carry on a conversation and perhaps even begin to recognize the spoken words because they stop trying so hard! Use your smart phone apps if you have none of these handy. Stock the house in as many rooms as possible and see if this can help reduce some of the anxiety!

Growing old sucks, but the alternative????? Adaptation is required!

Here's some interesting facts about hearing aids.

Wednesday, December 31, 2014

Happy New Year 2015

As this year comes to a close, we often reflect back and make resolutions for the new year. Being the caregiver in a sandwich generation will probably be one of the hardest roles you will encounter in a lifetime. Take a deep breath and keep going! Remember to take time for YOU!

Make new memories with loved ones and set in motion plans for your own future to make the burden on your children less as you age. Take time to smell the roses every day and enjoy life. Remember this is not a dress rehearsal; it's the real deal. Enjoy. Happy 2015!

Thursday, September 11, 2014

Never Forget

In September, 2004 we visited NY and I shot this picture. There was nothing quite so sobering as standing at Ground Zero and surveying the damage and feeling the impact this heinous act has imposed on all of us for a lifetime.

Never Forget.