End of Life Decisions — Don’t Let Senior Loved Ones Wait Until the End of Life to Make Them

We love life and want it to last forever, but the reality is that our time on earth is finite.

No one knows when the end of life will come for themselves or the ones they love, so being prepared to face it as we want and with dignity requires us to plan for the eventuality.

Facing the multitude of decisions that accompany the end of a loved one’s life can be overwhelming and heart wrenching for family caregivers and their senior loved ones.

Everyone has the right to create their own end of life plan, to withdraw or refuse medical treatment or to choose pets, visitors, or music to surround them near the end.

Everyone has the right to make his or her own decisions until such time when they are no longer capable and need someone to step in for them.

But how do we as family caregivers approach our seniors to make these decisions?

How can we learn what decisions for the end of life our senior’s may have already made?

This is one of the toughest conversations families will have but one of the most important for them to begin.

Legal Aspects at the End of Life

(Please keep in mind we are not attorneys and not providing legal advice. If unsure about laws or legal process where your seniors live, you should contact an elder law attorney or other legal expert.)

In addition to the straightforward tasks of planning for the end of life such as funeral arrangements, absolution of your senior’s personal possessions or finances or saying goodbye, it is important to ensure your senior’s medical directives are executed according to their wishes.

Here are a few documents that should be created and may require advice of experts like elder law attorneys to be sure they are done in accordance with the laws of the state where your senior resides. They will dictate whether specific treatment is used, withdrawn or withheld based on the wishes of your senior loved one.

These advance directive documents will be used when your senior is unable to speak for themselves.

Durable power of attorney for healthcare and/or finances

Who will be named proxy to control the decisions made for your senior when he/she can no longer make them? Who will pay your senior’s bills if they can’t? Who will make medical decisions in your senior’s place when he can no longer to express himself? Who will protect their rights for them? Who can be trusted?

These are questions for your senior to answer through the creation of durable powers of attorney for their healthcare and financial decisions.

DNR

Creation of a DNR or Do Not Resuscitate advance directive is important to be done before a crisis occurs. It requires a doctor’s signature instructing other healthcare providers.

Does your senior wish to have CPR if their heart stops or to have artificial means to remain alive? Are they well enough to survive chest compressions? Do you know their opinions on this?

A DNR only orders what will happen in the event their heart stops beating. It doesn’t decide if antibiotics or IV fluids will be given or if the healthcare team will give up on them.

Living will

This is an advance directive that will express your senior loved one’s desire about what medical interventions will be used to keep him alive. It can detail his or her wishes for the use of mechanical ventilation for breathing, if a tube feeding will be used to keep them alive (artificial nutrition or hydration), or if other (or any) heroic measures should be used.

These documents are witnessed by one or more individuals according to state regulations so check with a professional to be sure they are completed correctly.

Five Wishes 

Five Wishes is a document that is specific to a variety of different items that you and your senior may not have yet considered. They include decisions such as those contained in a living will but also other more personal things to be done at the end of life.

Considerations such as if they wish to die at home, if they want their pet on their bed, who should and shouldn’t be asked to visit, what music they want in the room to soothe them, what types of personal items they want nearby such as pictures of deceased spouse or certain flowers, and a host of other items.

This document will help them transition with dignity and guide caregivers to making their end more comfortable.

Don’t Just Put Advance Directives in a Drawer

None of these documents are written in cement and can be changed at any time, as long as your senior loved one is still of sound mind under the law. As a matter of fact, they should be reviewed regularly to be sure nothing has changed including the designated proxy.

Copies should be given to family caregivers and healthcare providers so that your senior’s wishes will be followed when the time comes.

Learning Senior Loved Ones’ Wishes

Older adults have probably already thought about what their end of life desires will be. They likely have dealt with family members and friends who have faced end of life.

Death with dignity is the goal for most of us, including our senior loved ones.

It is important, therefore, that family caregivers take the opportunity to learn what their senior’s wishes are and how you can advocate for them in the future.

Start the conversation with them to see if they have documents created, where they are kept and if you can read them for the purpose of understanding not changing their minds.

If they don’t have these documents executed, can you help them do that?

Completing Advance Directives

Each state has its own unique forms for advance directives. You can request a copy of your state’s forms using this locator from AARP.

Here are some questions to ask your senior when considering what to document in their advanced directives:

  • Do they want nature to take its course or have healthcare professionals perform heroic measures that can lengthen their life even if it could be considered futile?
  • Do they want their heart to be restarted or a tube down their throat breathing for them?
  • Do they want a tube placed in their stomach providing them with nutrition and fluids when they can no longer eat or drink for themselves?
  • Do they want to die peacefully and with dignity?
  • Where do they want to spend their final days — at home, hospital or hospice facility?
  • Would they prefer to receive comfort or palliative care at the end of their life instead of aggressive care?

Remember, while you may help them, it is important the answers be theirs to the advance directive reflect their wishes.

In the Event of An Emergency…

If your loved one has not made these wishes clear in a legal document, you may be asked to make some hard choices for them when the time is all too quickly upon you. That is why it is so important to learn as much as you can about their wishes now.

Talking with family members, including siblings, spouses, and other close relatives, who may have had conversations with your loved one along the way about what they might want done for them even if it was never put in writing can help you decide what is the best choice if you are called upon to decide without prior knowledge of your own.

Ask yourself-is this what he/she would want? Would they want to live this way?

If you don’t make some of these decisions quickly or if you are not prepared to respond, healthcare professionals will have to make them for you in the interest of life saving. Oftentimes, this is the very moment you need support and understanding to deal with your own emotions in the event of an emergency.

Before the Time Comes

Talking openly with all your loved ones about what their wishes are before the time comes, creating a document to record these wishes, and honoring their wishes when the time does come will not make the pain go away, but hopefully make it easier to deal with at that time.

Keep your senior’s advance directives, will and other financial documents like insurance information and burial arrangements in an easy to access place or supply a designee with copies so that they are where they can be reviewed as quickly as possible when needed.

You can prevent having to make tough choices by keeping the line of communication open with all your loved ones. Don’t be afraid to talk about death and dying, it is a natural part of life and unavoidable.

Care Technology Platforms and Seniors — Is Tech Filling the Gaps?

We believe there is a place in seniors’ homes for technology.

Technology innovations can also help family caregivers take better care of their senior loved one.

In many ways, family caregivers are still unsure where technology could help them.

Would installing smart home features be the best use of their money or paying for medical devices? Would a personal emergency response system be important for their senior’s safety at home?

Technology often will be purchased and maintained by caregivers, so they are the drivers of obtaining technology innovations.

The reality is that each caregiving situation is different, each senior loved one unique and how the family adopts technology is diverse.

What will work for one aging in place situation won’t necessarily work in another one. In fact, what works for one parent may not work for the other living in the same house.

Caregiving Technology Platforms

What technologies will family caregivers use?

Which innovations will solve their daily challenges to give them back some time and lift some of their burdens?

A recent study from Project Catalyst (of which AARP is a member) tried to help determine what works for caregivers of seniors and what doesn’t so that future innovations can help instead of hinder.

This report, Designing Technology for Caregivers: Understanding What Works and What Doesn’t, includes insights from the results of three recent pilot tests of how technologies can help caregivers overcome three specific challenges: care coordination, emergency alerting and selecting and hiring in-home aides.

Caregiver Technology Study Results

In this study, caregivers were given one of three platforms to evaluate.

Care Coordination

Many family caregivers have some type of system that they use to keep track of a variety of different bits of data. Some use computer programs to manage medication lists, contact information, important documents, insurance information and doctor’s appointments. These computer programs were not designed for caregiving, just data processing. Other caregivers use the old-fashioned way – paper and notebooks (well, not really old fashioned!).

In this study, caregivers were given a smartphone platform designed specifically to manage aspects of caregiving.

For those of us who have tried these types of platforms, the results were not surprising. Caregivers didn’t like the functionality or effectiveness of the platform they tested and went back to their prior organization method. They reported that the platform didn’t meet their caregiving needs.

Personal Emergency Response Systems (PERS)

Family caregivers worry about the safety of their senior loved ones. 75% of family caregivers say they would like to have technology that allows them to check on the safety of their seniors remotely. However, in this survey group, none of them has used a PERS type system before.

Concerns of cost, awareness of the benefits, and stigma of this type of product reportedly kept them from using it. After using the PERS for 6 weeks, 85% felt that their peace of mind improved as a result of using the PERS and 90% of care recipients felt more independent in terms of their safety and well-being.

Home Aides

In-home care is an option many family caregivers use or strongly consider using. How to safely hire in-home care can be an obstacle for many caregivers. Would hiring a home aide online make this process easier for caregivers and give them a level of comfort knowing the workers would have background checks, proper vetting, and could be easily scheduled?

During the study, caregivers were given access to hiring in-home caregivers online. After using this platform, 82% found a suitable home aide and 100% of those caregivers were satisfied with the care they got online.

Future of Technology for Caregivers

Technology is without question going to benefit caregivers who will find ways to incorporate it into their daily routines. It has already become important to many caregivers in both big and small ways.

71% of caregivers express their desire to use technology while only 7% of caregivers are using any of the products currently on the market, according to Healthcare Innovation Technology Lab (HITLAB).

A serious concern is that the problems for which there are technology solutions aren’t necessarily the problems family caregivers say are their most pressing.

It will be important moving forward for caregivers to have input in technology solutions before they are produced or as testers before they go to market.

As we’ve seen in this study, 2 out of 3 solutions were viable but one fell flat. The problem when a product that is supposed to help caregivers is more trouble than it is worth is the potential for that caregiver to stop trusting technology. As a result, they will miss benefits of other useful solutions.

Time and Money Both Key for Caregivers

It isn’t just wasting time but money, too, that will keep caregivers from adopting beneficial technology for senior loved ones. Family caregivers are the ones buying the technology in hopes of getting peace of mind, safety and time.

Caregivers need affordable solutions that yield value. Cost is reported by a majority of caregivers as an obstacle to adopting technology.

Caregivers also don’t feel that they have the time to learn about what new technology is available, what they need, which product will help fill their gaps, how to get it and start using it and fear it won’t be any better than what they are doing now.

These are all barriers to them adopting the latest technology.

Tech Growing in Importance to Caregiving

Experts feel that as the average age of caregivers continues to lower, the use of technology will grow because this age group is already engaged with technology.

Interoperability remains a concern for caregivers, given . the variety of technology platforms and devices available now and in the future. One example given was a medication management system that tracked which medications were used but was unable to have them refilled, especially if not coming from a single provider. They may keep data in a calendar, but they want that calendar to communicate with all family caregivers and paid caregivers to keep everyone up to date.

Even more important is that these technology platforms will be able to change with needs as time goes on.

Everyone agrees that technology should relieve caregivers’ burdens, not add to them.

How exactly can technology achieve this more seamlessly? Most expect this will happen only when tech companies and caregivers communicate and then collaborate so solutions for these needs are actually created.


Managing Seniors’ Medication – Family Caregiver Quick Tip

Having to take many pills each day, sometimes several times a day, can make it very difficult to do it correctly.

When seniors don’t get it right, the outcome can be deadly.

It has been estimated that 60% of seniors take their medications incorrectly. This results in almost 140,000 deaths a year. For others, making mistakes taking their pills can impact the effectiveness of their medications.

Common Medication Mistakes

Statistics show that nearly 70% of seniors have at least one medication, 50% take at least two medications, and 25% take five or more medications (that number jumps to 46% if your senior is over 70).

These numbers are just the prescribed medications and don’t include a multitude of over-the-counter aids or supplements many seniors use daily. It isn’t uncommon for some seniors to be taking more than 20 drugs a day.

We shouldn’t be surprised that seniors use more pills and potions of all kinds than any other age group.

That is a lot of pills to remember to take correctly. Here are some common examples of what can go wrong.

  • Skipped doses – 1 in 4 seniors skip a dose
  • Failure to fill a prescription
  • Taking drugs at the wrong time or wrong dose such as forgetting to cut in half
  • Eating a food or beverage that will interact with a medication
  • Not monitoring vital signs when needed before dosing like blood pressure or sugar
  • Mixing up similar medications taking them at the wrong time or in the wrong amount
  • Not informing all doctors or health professionals about what you are taking which may result in double dosing or interactions
  • Stopping a drug because they think it isn’t working
  • Not paying attention to side effects that could be creating medical problems.

It is very important that seniors and family caregivers recognize any adverse reactions when taking medications. Adverse reactions due to medication administration errors or new drugs can be very serious, including falls, depression, confusion, hallucinations and malnutrition.

In addition, memory loss and vision impairment caused by mismanagement of prescriptions can lead to more problems including continued medication errors.

Tips for Family Caregivers

With these tips, family caregivers can help senior loved ones manage their medications.

  1. Listen to the instructions from your senior’s doctor or pharmacist. If you have any questions at all, ask until you and your senior fully understand. Read the drug facts label and package inserts to learn more about your senior’s drugs.
  2. Bring all medications to the doctor once a year so that the medical professional can review each one to ensure they are still appropriate and no interactions exist.
  3. Keep a current medication list, including full name of the medication, dosage, and time so that it can be used at each medical visit and emergency healthcare situation.
  4. Talk to the pharmacist. This professional can check for potential interactions, put pills in easy to use and read containers, and give you any information you need to learn more about your senior’s drugs including the over-the-counter pills. Using one pharmacy will help keep your records clear and avoid interactions.
  5. Set up pill boxes for your senior. It can be weekly pill boxes that are found in all drug stores or monthly like the Pillrite. This product includes a medication list and emergency information. (We were able to test the Pillrite and our senior tester loved the ease of filling, med list info, unique way the week pillbox opened for filling and the way AM and PM were separated.) Pillrite also has an informative video if you would like to learn more about this effective product. In addition to these pill boxes, there are also smartphone apps linking to their pillbox that caregivers may like that gives remote alerts when pills are not taken as they should.
  6. Be sure medications are stored properly especially if it should be refrigerated. Also read the label instructions to be sure it is taken properly – with food, not with milk, after a meal, with full glass of water, etc.

Medications can be life saving for our senior loved ones and contribute to the highest quality of life.

Proper administration of medications will help them attain their goal of healthy and independent aging.

 


Adaptive Clothing to Make Seniors’ — and Family Caregivers’ — Lives Easier

Family caregivers have many responsibilities caring for their senior loved ones that can quickly drain their time (and energy) each day.

They are chauffeurs, schedulers, cooks, house cleaners, dog walkers, comedians, history keepers, pill managers, and grocery shoppers, just to name a few of the hats they wear every day.

Keeping senior loved ones fed, healthy, clean, and in good spirits can take a lot of time and effort for family caregivers.

Whenever there are things that make all these job duties a little easier, it is important to share the good news and help caregivers gain the gift of some time for themselves by lightening their daily load.

We have found something that we think might help some caregivers take less time dressing, toileting, and cleaning their senior loved ones each day and night.

Adaptive Clothing to the Rescue

Have you heard of adaptive clothing?

Adaptive clothing, by definition, is designed for people with physical disabilities who may experience difficulty dressing themselves due to an inability to manipulate closures, such as buttons and zippers, or due to a lack of a full range of motion required for self-dressing.

It can also benefit seniors with cognitive impairments who no longer recognize what to do with closures or have behaviors that might lead to challenges getting or staying dressed.

Seniors and caregivers need function in all things especially clothing. A little style would be nice too.

When seniors have impaired mobility, joints become stiff, or they are unable to button up their shirt or zip their pants without help, adaptive clothing can help caregivers and seniors.

When seniors can no longer dress or toilet themselves at all, getting them ready for the day or keeping them clean and dry can be a real struggle for tired caregivers.

That is why clothes that make these jobs easier could be a great solution for many family caregivers.

Benefits of Adaptive Clothing

There are many reasons why specially designed clothing could help your senior.

Seniors who have arthritic hands and difficulty with the closures in most clothing, including buttons and zippers, can be more independent wearing clothes that use Velcro, snaps, or easy to pull zippers.

Some seniors who have cognitive issues are often unable to dress themselves. Perhaps your senior loved one enjoys disrobing during the day and you must constantly put them back together. Specially designed clothes can help them get and stay dressed.

When seniors are incontinent, they may need to be changed more frequently, which means more frequent dressing and undressing. Seniors may be unable to position themselves or have impaired mobility which makes toileting almost impossible and requiring even more hands-on care by the family caregiver.

Here are some examples of clothing modifications that can be found in adaptive clothing that will make caregiving slightly easier for you.

  • Closures that allow seniors to manipulate themselves
  • Full zipper backs to keep them in their clothes with no worry of disrobing
  • Secure closure tabs
  • Elastic waist bands for comfort
  • Easy care fabrics
  • Fabrics that ease sensitive skin, such as 100% cotton
  • Fabrics and stitching that withstand frequent washing, especially for incontinent seniors
  • Pants with long zipper on both sides for ease of dressing
  • Snaps instead of buttons for arthritic fingers
  • Cut out seat for non-ambulatory seniors for easier changing when incontinent
  • Socks that are made wider for swollen feet
  • Non-skid slipper socks
  • Shoulder snap closure bedclothes
  • Slip on or adjustable shoes with nonskid soles
  • Easy to pull over the head or easy to step into styles when joint pain or balance issues are present
  • Simple designs without belts and buckles
  • Built in moisture barriers for incontinence

Adaptability With Style

Adaptive clothing that is comfortable for your senior, easy to use and wears well can also be – and should be stylish.

Everyone feels better when they look nice and shouldn’t have to settle for wearing PJ’s or over-sized T-shirts every day because that is all they have when specially designed clothes are available.

There are many beautiful colors, fabrics and styles including V-necks, patterns and a rainbow of colors available in adaptive clothing.

There are styles specifically for men and women or unisex products. There are jumpsuits, separates, shoes, socks, underwear, night clothes, Capri pants, and many other available products from which to choose and meet your senior loved one’s needs.

There are more and more manufacturers creating clothes that can accommodate a variety of special needs and more will come as the demand for them increases.

Adaptive clothing may be a bit more expensive per item than standard clothing, but their utility and improvement in your daily caring will be worth it.

Here are some more examples of adaptive clothing for women and men at Amazon (affiliate links, as are pictures).

 

“Have patience. All things are difficult before they become easy.” ~~ Saadi