Time for some pie charts, to explain to your how your life changes, depending on your loved one’s needs. Consider there are four stages of care: basic, intermediate, advanced, and end-of-life. When you understand the demands placed on you for each stage, you will be able to better utilize your time and energy more efficiently.
Your loved one is also going through changes; you may begin to see signs of frustration and defeat as independence gives way to dependence. The greater the need for help, the greater the sense of helplessness, unless you can get creative and empower your loved one to continue contributing to the relationship.
Pie Talk: Changes You Can Experience as a Caregiver
Basic Care
This is the primary stage, where your loved one is actually able to handle many of his or her needs independently, provided you lend a hand. Your relationship at this point is still fairly flexible and you are able to provide assistance on a short-term basis, such as while your loved one recovers from illness or surgery, or on a long-term, ongoing basis, by scheduling your assistance when it’s convenient for you.
Intermediate Care
This is the secondary stage, where your loved one needs a little more help, due to increasing limitations, either physical or mental. You begin to find yourself juggling your “to do” list, giving up some of your own free time in order to provide care whenever it’s needed.
Advanced Care
This is the third stage, where your loved one needs a great deal of help in order to function on a daily basis. Independent living is no longer an option. This is the time you begin to utilize resources in order to maximize your support system and maintain your own sense of self.
End-of-Life Care
This is the final stage, when your loved one is likely to enter a formal hospice program. While cure may no longer be an option, comfort is critical to maintaining quality of life. Worries, fears, and anger can complicate and compromise your loved one’s wellbeing almost as much as physical discomfort.
Pie Talk: What Your Loved One Can Experience:
Basic Care
Your loved one can feel uncomfortable asking for assistance after surgery, during treatment for illness, or even as age takes a toll. Help your loved one maintain as much independence as possible in order to preserve the delicate balance between patient and caregiver. Empower; don’t hinder your loved one’s ability to function by insisting on doing everything.
Intermediate Care
Your loved one might find it easy to accept your help on a temporary or limited basis, but as the need for care increases, so do the reactions on both sides. For people used to taking care of their personal hygiene, daily routines, and mobility on their own, needing a caregiver can be a bitter pill to swallow. For caregivers, managing both your own life and your loved one’s can be challenging. It takes time to adjust your relationship and work out the kinks.
Advanced Care
Your loved one can experience a loss of self as the need for care grows. Between the fatigue and pain associated with disease or aging, physical issues can be compounded by sorrow that life is changing in unpleasant ways. The greater the uncertainty of your loved one’s prognosis, the harder it is to manage fear and dread. When your loved one doesn’t feel well over an extended period of time, it’s like being on a sinking ship — he or she can feel lost in a sea of tears.
End-of-Life Care
Hospice patients are beginning their final phase of life, and even though saying goodbye can seem like an impossible task, there are still things to be done. Final wishes, coming to terms with the worries associated with death and those left behind, and even ordinary tasks that may not have yet been completed can add to a loved one’s sense of being in limbo. Communication is critical between caregiver and loved one, in order to maximize comfort and relieve any sense of guilt. Death is not failure. It’s a part of life that happens to us all.
Cake Talk: Your Life Layered onto Your Loved One’s Creates Crunch Time
It’s easy to talk about your needs or those of your loved one by utilizing a pie chart, but in real life, it’s far more complicated than just thinking of you or your loved one. Think of the situation like a layer cake. There are at least two layers and they have to meet, lest that cake be lopsided.
We’ve looked at this from both sides. We know your needs will be different from your loved one’s needs. It’s important to understand that when your loved one’s needs for care are few, your life will go on as normal. As your loved one’s illness or disease progresses, you will find yourself constantly readjusting your assistance to mesh with your own needs.
Scheduling activities on a limited basis is fairly easy when you are only providing a few hours of help each week, but when your loved one is dependent on you for daily care, you will find yourself stretched thin. Flexibility, creativity, organization, management skills, and a good sense of humor are the tools that will keep things copacetic. So will your efforts to keep your loved one involved in the decision-making process. The more you can convince your loved one to cooperate with the care you provide, the better you will both feel.
Pie is a single layer, representing one person. Cake is two layers, representing two people. Overlap your loss of self with that of your loved one. As your loved one’s health declines, so does capability to care for one’s self. And the more help your loved one needs, the greater your involvement. In other words, once those two layers are joined to become cake, that’s how they’ll stay, until such time as your loved one no longer needs help, through recovery, death, or admittance to a medical facility.
Basic Care Cake
If we go back to the time you spend as a basic caregiver, your pie looks like this:
Sleep — 8 hours
Work — 8 hours
Fun — 4 hours
Me Time — 3 hours
Caregiver Time — 1 hour
Your loved one’s pie looks like this:
Resting — 8 hours
Living normally — 8 hours
Adjusting to health limitations — 4 hours
Energy — 3 hours
Seeking comfort — 1 hour
Your lives are still fairly in sync with each other. You only provide a minimum amount of time as a caregiver because your loved one is still fairly independent. You will both probably get through it just fine.
Intermediate Care Cake
What happens when your loved one’s health requires you to provide more assistance? Let’s take a look. Your pie looks like this:
Sleep — 7 hours
Work — 8 hours
Fun — 4 hours
Me Time — 2 hours
Caregiver Time — 3 hours
Your loved one’s pie looks like this:
Resting — 7 hours
Living normally — 7 hours
Adjusting to health limitations — 4 hours
Energy — 2 hours
Seeking comfort — 4 hours
That means you’re probably both sleeping at the same time, and your loved one is able to live a fairly normal life while you’re still working. Where will you have to be flexible? If your loved one is spending an average of four hours adjusting to the new limitations, you’ll probably spend three hours pitching in. That means that your personal choices on how to spend your fun time and your “me time” are no longer a generous seven hours. You’ve lost an hour each day. You’re probably also giving up an hour’s sleep each day, just to get everything done. What does that mean? You’re likely to feel the time crunch somewhere, especially on those days you spend more than three hours as a caregiver.
But while you’re sacrificing, what is your loved one going through? He or she is spending less time resting and living a normal life, and more time trying to find comfort, doing it with less energy than before. In other words, life has become harder for your loved one. Everything takes more effort and requires more assistance. Think about the psychological impact of that. It’s hard to accept that your body has let you down that much, to the point where you spend most of your day just trying to stay afloat, instead of following your dreams.
Advanced Care Cake
If you thought it was hard to accept the need for intermediate care, it’s nothing compared to needing advanced care. Not only will you find yourself working harder, so will your loved one. Here’s what your pie looks like:
Sleep — 6 hours
Work — 6 hours
Fun — 3 hours
Me Time — 1 hour
Caregiver Time — 8 hours
Your loved one’s pie looks like this:
Resting — 6 hours
Living normally — 4.5 hours
Adjusting to health limitations — 4 hours
Energy — 1.5 hours
Seeking comfort — 8 hours
If you just focus on yourself, you’ll notice that you’ll probably have fewer hours available away from your loved one for your job. (This is the stage where some folks telecommute to work.) You’ll probably also spend less time sleeping, having fun, and getting your own “to do” list done. What you will do is provide care to your loved one for about one third of those twenty-four hours every day. Think about that. If you’re working six hours at your job and working eight hours for your loved one, something’s got to give, and you want to make sure it isn’t your health. This is the stage where it’s critical to have good back-up. You need to take that respite time away from your loved one and you need other people available to relieve you when you have to multi-task. Sometimes you will have no choice but to turn over some of your responsibilities to other people, and you have to be able to do it without feeling guilty. Bottom line? You can’t be in two places at once, doing two full-time jobs without breaks. This is why it’s so important for you to learn to manage the care you provide.
But what is your loved one going through while you’re busy doing two jobs? In reality, he or she is actually doing the same thing, only in that case, it’s called trying to survive. If your loved one is resting six hours a day and living normally for about four and a half, where does the rest of the time go? It goes into struggling with those health limitations on an ever-dwindling supply of energy. Everything is harder for your loved one. If he or she spends eight hours a day trying to find some level of comfort that makes life bearable, that’s hard work.
End-of-Life Care Cake
This is often the most challenging of care, and yet, if you set your mind to it, it can also be a rewarding time for you as a human being. Your pie might look like this:
Sleep — 5 hours
Work taking care of your loved one — 5 hours
Fun — 2 hours
Me Time — 1 hour
Caregiver Time — 11 hours
And your loved one’s pie looks like this:
Resting — 5 hours
Living normally — 4 hours
Adjusting to health limitations — 2 hours
Energy — 1 hour
Seeking comfort — 12 hours
For you, life is probably fairly unpredictable. You may or may not be sleeping at the same time your loved one is resting. You may be doing specific tasks for your loved one while he or she is trying to maintain a normal life, at least at first.
You may find yourself dealing with legal or insurance issues, trying to clarify last wishes, funeral arrangements, notifications, and all kinds of other unusual tasks that crop up at the end of life. This is in addition to providing care, coordinating with the hospice team, and fielding visits from family and friends.
One thing you may have to do at this point in time is remind yourself that you really do need that three hours a day to yourself from fun time and “me time”. It may come in tiny segments — you might take fifteen minutes to pay bills in the morning, half an hour in the afternoon to walk the dog, and an hour to do some grocery shopping at night (believe it or not, it’s a good stress buster to walk the empty aisles and you don’t feel guilty because you’re multi-tasking.)
What is happening to your loved one during this time is usually fairly predictable. As the body moves toward death, the organs slowly undergo a transformation. You might see your loved one’s muscles atrophy or notice a change in breathing. He or she might sit in chair, dozing on and off throughout the day and night. There’s less effort put into adjusting to health limitations and far more effort put into seeking comfort. If you thought your loved one was struggling to find energy to do things before, you may notice it’s even harder now. Your loved one can’t really function independently or be alone. Someone has to be around to keep him or her safe. The risk of injury is much greater now. You don’t want your loved one falling out of bed in the middle of the night or becoming lightheaded as blood pressure drops upon standing.
Does that sound dreadful and dreary? It may be from time to time, but it’s also sometimes incredibly heartwarming. Your loved one may feel compelled to share deep and moving thoughts with you, on life, love, and future hopes for you. It’s a chance to bond before that final farewell, and sometimes just sitting and being with your loved one is the best thing you can do as a caregiver.
End of life care brings another important change — palliative medicines. In good hospice programs, major efforts are made to keep your loved one as physically comfortable as possible, while maintaining as much normalcy as possible. The idea is to tamp down the discomfort of dying while allowing your loved one to continue taking part in life for as long as possible. When pain is effectively managed, your loved one is able to finish those final tasks before dying.
Copyright Sara M. Barton 2014-2020