Annette has been caregiving since she was 18 years old when she started caring for her uncle and then her parents. She can’t imagine herself doing anything else. “It means everything to me. It’s giving a lot of love and I get a lot of love back from my patients and that’s what’s important.”
For the past five years that love has been directed towards caregiving for her patient also receiving Hospice Care. I say this, “The Lord works in mysterious ways because I never ever thought I could do something like this. You know where I have to do everything. I never thought I would be capable. As I said the Lord works in mysterious ways and He’s got me on this mission.”
Annette has a strong calling to caregiving, especially for those nearing the end of their life. When asked from an instructor about where she saw herself working, she indicated, “I really wanted to work at hospice. That’s where I wanted to work. I wanted to do that. A lot of people they don’t have children and they don’t have family. And I just wanted to be there because I’m not afraid when somebody dies. . . and I just wanted to be there to hold their hand, like they can feel I’m one of their family members. That’s what I really wanted to do.” And as she gently and lovingly stroked the hair of her patient, she said, “But I’m here now and seems like someone else will call me when her journey is over and I will care for them.”
And while she loves her work, Annette is honest in her admission to the toll of caregiving. “It can be frustrating at times because of the exhaustion. For the longest time it was just the two of us, 24/7. At first it was okay, but as she started changing, it got harder.” After several missed appointments to her own doctor, Annette realized she needed a break and some help in caring for her patient. When faced with another possible missed appointment, she decided to reach out to Hawaii Care Choices who provides her patient with Hospice Care.
Annette was very hesitant at first, “Like . . pshhh, hospice is for the dead, when they are dying, you know, the last days. And I knew she still had a lot of life in her. But hospice has been with us for almost seven months now. And is very very helpful. I’m really glad I didn’t block it out, and just push you guys away. Hospice is helpful. Very helpful.” When asked how she came to that point of view about hospice, Annette said she had a family member who came on to hospice in the last few days of their life and that’s how she thought hospice worked, only coming in at the very end. Annette is not alone in that thinking.
Many people only have the experience of hospice coming in to provide care to someone in the last days and hours of life. When in fact, hospice care may be used when a person is expected to live six months or more if their illness runs its usual course. Additionally, a person can stay in hospice beyond that time if their doctor and the team decide they still meet that criteria.
Annette has found hospice to be a tremendous support not only to her patient but to her. The situation is very different now with hospice support. “Well, hospice is very concerned and caring. The patient is very important to hospice. And I like that. And they are very helpful, if I need help with anything. I make a phone call, they return the call and I get the help I need. They are really open and try to help any way they can. Jessica, her nurse, comes to help with medication or questions I might have about her care. All who come from hospice are very caring and compassionate.”
If there is one thing Annette would say to caregivers is “Take a break. Take a timeout if you are starting to feel frustrated. Caregiving takes a lot of patience.” Annette knows how important this is. “Take a break. Get outside.” Outside with her plants is where Annette loves to be when she needs to recharge. “Caregiving is exhausting, I’m not gonna lie. For many years, I was the only caregiver for my patient. It was so difficult to ask for help because of trust. It’s hard to trust someone else will know how to care for my patient, the way she needs it. I would give lots of instructions. Do this, this way and this, that way. I wanted to make sure I was doing the best I could by her. But I learned to ask for help. As I said, I lost a lot of weight and missed a lot of doctor’s appointments because I didn’t have help for her. And so now I can call hospice and they will send a volunteer and they always give me the four hours. They always say, you can take that four hour break and that is very important.”
Many caregivers consider caring for a loved one to be their duty, calling, or even a privilege. Though gratifying, make no mistake: caregiving can be difficult work, both emotionally and physically. Many caregivers struggle with guilt, anger, anxiety and sadness. As caregiving responsibilities increase, they may find less time to take care of themselves, thus neglect their own health. They may not be eating or sleeping well, and over time, experience exhaustion and burnout or their own debilitating illness.
The strain of constant physical, emotional and financial challenges shared by many caregivers can make for a lonely existence. Fortunately, hospice considers both the person who is ill and their caregiver to be “the patient” and addresses many of these issues. When someone is dealing with a terminal illness, family members and other loved ones are suddenly thrust into the role of caregiver, often with little preparation or knowledge of what to expect. Hospice team members support the caregiver by providing information and answering questions. Caregivers also are given practical tips, advice and education to help them manage the considerable burden of caregiving. Like Annette, many caregivers report much of their worry was relieved simply by knowing they were never alone, that they could call hospice at any time with a question, concern, or for help.
It may be hard to imagine leaving your loved one in someone else's care, but taking a break can be one of the best things you do for yourself — as well as the person you're caring for. Caregiving often involves irregular hours and little time “off.” It isn’t so much a matter of “if” but when you need a break, take it. You can try early on to find others willing to step into the caregiver role periodically so you can have some “down” time.
It is not a common understanding that hospice support is for the family and caregiver, just as much as it is for the patient. Hospice provides that additional layer that comes in provides respite to caregivers in the form of volunteers who sit with patients, providing companionship so the caregiver can take that much needed break. With hospice, an adult volunteer may be provided who can visit for up to four hours so the caregiver can take care of other things or just relax.
Annette feels a tremendous amount of support from Hawaii Care Choices hospice program. When asked, “What would you say to someone whose loved one could use hospice care but are hesitant to call?” She immediately replied, “Don’t be like me who held back. Give it a try. Open that door. Let hospice in and see how you feel. Don’t hesitate. Let hospice in. Then take it from there. Do not be afraid of hospice. It is so very helpful.” And when it comes to offering more words of advice to caregivers, “Be honest. Love the person you are caring for. If you cannot do that then go look for something else to do. It takes a lot of patience. You have to have it in your heart. Have compassion, because we are all going to be older one day and may need to be cared for.”
For more information about caregiver support and Hawaii Care Choices, please call us at 808-969-1733.