Supporting Someone You Love with a Chronic or Terminal Illness

By Roz Jones

There are times when we have to step up to the plate and do some very hard things. Few things are harder than supporting someone with a chronic or terminal illness. Though difficult, it’s an honor to be a support to someone as they walk out their final life experiences. 

Supporting someone you love with a chronic or terminal illness won’t have a playbook. There isn’t a step-by-step manual listing out where to walk, what to say, and how to be. You’re going to figure things out as you go but even though there aren’t any specific rules, there are some common practices that will make things a bit more comfortable. 

Get used to being uncomfortable- The sooner you can open up to the fact things are going to be uncomfortable, the sooner you can be open to managing whatever happens. Having a “whatever it takes” attitude and letting your loved one know you are there regardless of how uncomfortable things may be will help them focus on their own needs rather than worrying about yours. 

Ask- It’s that simple. Ask how you can help, when you can help, and if you can help. Your job is to offer and their job is to allow you in or set a safe boundary to keep you on the ready if they are not up for company or assistance. 

Listen- Lots of support comes from simply being there and listening. People are do-ers and in their doing, feel like they are making a difference. Sometimes there is nothing to be done but to sit in companionship and offer your support.  

Meet people wherever they are emotionally- You can expect a wide range of emotions as your loved one comes to terms with their situation. You may see every emotion on any given day. From denial and anger to resignation or peace. Try to meet your loved one where they are and engage with them in a peaceful and loving way. 

Learn from the journey- Though we don’t all know when our time will come to die; we can be assured it is coming. Going through an end-of-life experience with someone else can help you better prepare for your own experience. Learn from them and decide for yourself what matters to you when you think about your own end-of-life needs. How you want your medical care, financial care, and family to care for you.  


Supporting someone you love with a chronic illness will bring out the best you have to offer. It is an honor and a privilege to support someone as they navigate the final days of their lives. Don’t put too much pressure on performance. Be compassionate and caring and the rest will fall into place. 

Get Comfortable Talking About Uncomfortable Things

By Roz Jones

There are things you generally don’t talk about in polite company- politics and religion top the list. Being considerate about tricky topics is a good thing. Avoiding uncomfortable things helps people feel at ease but sometimes you have to get comfortable talking about uncomfortable things. 

Talking about death, dying, and making plans might feel morbid but it is a necessary part of living. Being able to share your thoughts about things like: 

  • What sort of care you consent to in the event of an accident or injury
  • If you want to be revived or kept on life support
  • Where you want to live in the event you can’t live at home
  • Who should make medical or other decisions on your behalf if you are unable
  • Your thoughts on funeral planning and burial options
  • And more 

One of the reasons it’s so hard to talk about uncomfortable things is the feeling there is little control. The truth is, if you do not have plans in place, you’ll have very little control but if you do have plans in place, much of your care and aftercare is well within your control. All the more reason to have tough talks!  

Here are some tips for getting comfortable talking about uncomfortable things

Tip #1. Do your homework- The more you know about a subject, the less uncomfortable it is. There’s nothing you can’t learn about any subject connected to the legal, financial, and medical aspects of end-of-life care. Educate yourself and you will be well equipped to have intelligent and easier talks about the subjects. 

Tip #2. Prepare your audience- If you are going to have an uncomfortable discussion, prepare your family or friends beforehand. Don’t blindside someone with a tough talk they may not be emotionally ready for. Instead, give them time to get ready and be mentally prepared to absorb what you need to share. 

Tip #3. Practice- The more often you talk about uncomfortable things, the easier it will be. Start with professionals like clergy, medical staff, or attorneys before chatting with family or friends. Practicing your conversation will help you find the best words to use as well as become more comfortable speaking them. 

Some conversations are going to be tough no matter what. Being able to speak about uncomfortable things more comfortably helps those who depend on you feel safer and more prepared to help when the time comes. Get comfortable by doing your homework, prepping your audience, and practicing your conversation beforehand. 

Caregiving Tips for Baby Boomers

5 Tips for Decreasing the Cost of Caring for Elderly Parents

Roz Jones

Over 30 million Baby Boomers provide countless hours of assistance to elderly parents at no charge. It is estimated that, using average hourly wages, the total amount of this uncompensated care is comparable to the entire Medicare budget. For the estimated 7 million Boomers who provide long distance care, actual out of pocket expenses amount to almost $5,000 per month. For caregivers who have, or are considering leaving the workforce to care for an ailing parent, the costs are even greater over $650,000 in forfeited salaries, benefits and pensions.

This stark economic reality shows only one dimension of the price caregivers pay for this act of love.

Caregivers pay with losses that extend well beyond their bank accounts. They often forego the activities that bring joy and richness to their lives, like meeting friends for dinner, or going out to the movies or taking family vacations. They pay with their time, the loss of professional opportunities and the erosion of personal relationships that result in isolation.

Sometimes, otherwise healthy loved ones need a short dose of care as they recover from an acute medical episode like a broken leg. Usually loved ones are on a path of steady decline with cascading assistance needs. Some caregivers sacrifice large chunks of their own lives as they help their parents and other family members and friends peacefully make their transitions. Caregivers can pay with their own health and well-being. In fact, we have evidence that some caregivers pay for their acts of care with their very lives.

You can decrease the personal and economic costs of caregiving. This means proactive planning rather than reactive responding. Planning saves money. You know this as you reflect upon your experiences of going to the grocery store with and without a shopping list. Planning also minimizes personal wear and tear and decreases stress. You will feel much better when you know your options and develop back-up plans before you jump into a challenging project.

5 Tips to Decrease the Cost of Caregiving:

1. Begin the conversation today. We have tremendous cultural resistance to the recognition of aging, disability and death. Just as the first few steps uphill are the hardest, so, too, you may meet the greatest resistance simply starting the conversation about their possible need for care. Say today, Mom and Dad, it would be great if you lived forever, but the discovery for the fountain of youth is nowhere on the horizon. What thoughts and plans do you have about enjoying your golden years?

2. Create a plan. Talk with your parents about their ideal plan if they are no longer able to care for themselves. Then, start to work toward that proactively. Investigate long-term care insurance. Draw up the appropriate legal documents. Find out who would make medical choices if they were not able to make them on their own, along with some guiding principles for the choices. You can anticipate and limit parental resistance by saying, Mom and Dad, I just got back from the lawyers office signing my will and durable medical power of attorney. I’ve asked Mitch to make my medical choices if I cannot make them myself. Just so you know, if I were in vegetative state, I wouldn’t want to be maintained on a machine. You probably already planned ahead too, right?

3. Use personal and community resources. Make caregiving a family job to which each member contributes. Even children can make grandmas life special with drawings and phone calls. Identify services that make your job as a caregiver easier. If you and your parents live in the same community, check with friends and neighbors and local organizations to learn about services and resources that will make your job easier. You say, Mom has just moved in with us, and she wants to find a card game with the girls. Do you know of any senior centers that have social events? How about transportation?

Were a mobile society and millions of caregivers live more than an hour away from their parents? Executive William Gillis learned from his own personal experience how challenging it is to identify community resources from afar. As he was carving the path that ultimately led his on-line portfolio management service, he became the caregiver for his father. Talk about mixed emotions! Professionally, he was introducing a service that let millions manage their investments with one click of a computer mouse. Personally, he was investing untold hours just to find one bit of information to help his dad.

As with so many innovators, he used his personal and professional experience to launch Parent Care, a service that he wished would have made his life as a caregiver-at-a-distance easier.

4. Gather cost-savings tips. This might mean something as simple as ordering generic medication or regularly inquiring about senior discounts. But, most cost savings opportunities aren’t as obvious. Mr. Gillis found, for example, that some states will pay for phones for hearing, visually or mobility limited seniors or fund home safety improvements. He said, we’ve invested heavily to locate time and money saving resources that most would have difficulty finding. I made it a personal mission to help other caregivers avoid some of the costs and frustration I encountered. You don’t have to re-invent the wheel. Tap into the resources others have collected.

5. Take care of yourself. You will be able to provide the best care as a caregiver when you’re at your best. Get good nutrition, enough sleep and regular exercise. Manage your stress and do a little something every day to nurture your soul. Understand that you are at increased risk for anxiety, depression, and weakening your immune system. Talk to your doctor if you see worrisome signs such as problems sleeping, changes in appetite or loss of interest in activities you enjoy.

Despite the costs, most caregivers say that they received much more than they gave. Most say they would do it again, and many do.

Sometimes the question is not the personal cost of caregiving; it’s the value that you bring to the lives of others that matter at the end. What personal cost are you willing to pay for the privilege of helping those who welcomed you into the world to enjoy their golden years and travel the road of illness with love and dignity?

Guilt Helps Nobody

Roz Jones

If the job of being a caregiver only involved giving help to your aging parent such as doing the dishes and helping fill out the Medicare paperwork, your life would be considerably easier.  And if that were the case, even if there was a lot to do, the problem of caregiver burn out would not be such an issue.

But the real drain on you and even on the senior citizen you are taking care of comes in the emotional toll that the care giving relationship brings with it.  Because the “assumed understanding” of the care giving relationship is based on the extended giving of a very large favor, guilt becomes a common element in every aspect of the time you spend with your aging parent.

It’s very easy for the senior citizen to feel guilty for asking you for the work you do to take care of him.  It’s a strange situation because in most cases, they never asked.  You may have stepped in because you saw your parent’s life beginning to unravel and you knew that someone had to help get his retired life organized.  And yet, the senior citizen feels a lot of guilt because you are giving him huge amounts of time and that is time away form your family and maybe your work to do things for him unpaid and very often without thanks.

It doesn’t help that the time of transition from independence to assisted care is one of huge loss of self esteem for your aging parent.  There are a lot of tremendous changes that happen in rapid order for y our parent and they happen in areas of life that have remained unchanged for decades.  If inside of a year your mom or dad go through a loss of their home to go live in an assisted living facility, loss of mobility because they cannot drive and loss of independence because everything is being done for them, that causes a lot of negative emotions.  Guilt makes its appearance because they feel irrationally that if they had not grown old, this would never have happened.

But guilt also is an issue for you, the caregiver.  There always seems to be something more you could be doing for your parents.  It doesn’t help that the senior citizen you work so hard to care for also inflicts guilt on you by whining, “I wish you never had to go home” or by complaining about their lives and getting angry. 

So what can be done about all of this guilt?  Guilt doesn’t make the relationship better and it doesn’t improve the quality of life for the caregiver or from the senior being cared for.  So whatever we can do to shut it down would be a positive step for both parties.

Probably the most proactive thing you can do about guilt is confront it directly.  Sit down with your aging mom or dad and get those guilt feelings out in the open.  It’s not their fault they got old.  Your parent should not feel guilty about being cared for by you.  After all they cared for you for decades when you were just a child and young adult. 

But taking the teeth out of guilt, you have a real chance of getting that out of your relationship.  By learning not to put guilt on each other, you become a team in care giving, not combatants.  And these are positive steps toward a healthy senior citizen and caregiver relationship.

Ease into Caregiving

Roz Jones

There is one axiom that if your parents don’t pass away young in life, you are going to watch them age.  Now for the most part, this is a natural and nice part of life because mom and dad can slowly become grandma and grandpa which are nice roles for them after working so hard to raise you.

But a corollary to that axiom is that if mom and dad are going to age, at some point you are going to begin helping them with the daily affairs of life.  And that occasional helping will escalate as their needs grow strong until you will become a full-fledged caregiver for an elderly person.

For many, the time when you suddenly become a caregiver is just that – sudden.  It happens often after the death of a parent and the widowed parent suddenly becomes needy because of the loss they are experiencing.  For married couples who have been together for decades, that loss is equivalent to the loss of a limb and far more devastating so that may be the time when you suddenly go from having few concerns for your aging parent to having many.

It might be strange to look at it this way, but the more you can ease into care giving, the more time you have to get used to it, for your elderly parent or parents to get used and for your family, forefends and coworkers to get used to it.  And if you can step in and make some minor changes to the environment of your aging parent, you may be able to delay the time when they become very dependent on you. 

If your parent or parents are still living in their own home, there are things you can do to make their living space more accessible and safe including…

  • Create a lifestyle that is all on one level.  Stairs can become a hazard for an elderly person.  So early in your plans to adapt their living space, move them into a ground floor bedroom and put all significant rooms, including the kitchen, the pantry, the laundry room and the living room are on the same level. 
  • Take some of the work out of daily chores.  Most local grocery stores will deliver food to the elderly so you can make those arrangements for your aging parent.  You can also find services that work by the hour that come in and clean the house, do simple repairs and chores and take care of the business of home ownership for your parents.
  • You can make arrangements with home  health care professionals to drop by for an hour or two a week just to make sure your parents medications are still safe to use, that all prescriptions have been filled and that your parent understands their medications and when and how to take them.
  • Reorganize the kitchen so things your parent will use every day are on an eye level shelf and are easy to get to and to put away after washing.  Make sure the toaster oven, microwave and other important appliances are also easy to get to and that your parent is comfortable with these units if the models that may have come with the assisted living center are not familiar to them.
  • Go through the house and make it easy for your parent to use.  You can put in those walking and grab bars along the halls and in the bathtub and other places where your mom or dad might need the additional support.  You can check the lights so there are plenty of visibility for what your parents have to do.

To really take the preparation of your parent’s living space for their ease of use and safety, look at pulling emergency pull ropes in every room.  These units are used extensively in assisted care units and they make it possible for your parent to pull that cord if she is in trouble and set off an alarm or call to you or to emergency care, should there be a sudden medical need.

By working to make your parent’s work area easy to use and safe, you can do a lot to put off the time when your mom or dad may have to move to a retirement village or nursing home.  And you keep them independent which allows you to slowly ease into care giving which is much easier on everybody.