Daneen Bernhardt has been a nurse with Upland Hills Home Care since 1998 and with Upland Hills Hospice since 2014. She describes working with Upland Hills Hospice as “by far the best and most rewarding job” she’s had. Outside of her role with Upland Hills Health, Daneen teaches Tai Chi to seniors.
Choosing hospice can be very difficult for both the person who is nearing the end of their life, and the family and friends who love and care for them. As a family member or caregiver, you want to do everything you can to help that person to be as comfortable as possible and give them the best care.
Here are 5 tips that may help as you care for your loved one.
1: Listen carefully.
Your loved one may have some very specific goals they want to achieve in their hospice care. Do they want to try to make a special occasion that is coming up? Can you help arrange a visit with someone they wish to see? Do they want people to visit regularly, or do they prefer no visitors? Or is it more basic such as reaching a better level of pain control, or breathing easier, or finding an overall better level of comfort? You can help by listening and if the person wishes you to do so, you can help to relay these goals to the hospice nurse, who can then incorporate these into the plan of care. By listening carefully, you can be an advocate for your loved one in following their wishes.
2: Plan ahead and don’t be afraid to ask for help.
Caring for a loved one on hospice can be difficult work, and it has been my experience as a hospice nurse, that one person cannot do it alone. As soon as hospice is initiated, start thinking about who you can enlist to help. You will need it. The hospice team will offer ideas and resources in addition to the services hospice provides. You may have family and friends who want to help but are not sure how. Be specific. Would having some meals provided be helpful to you? Do you need someone to sit with your loved one for the morning or afternoon so you can keep an appointment? Make the calls and set that up now. Are you alone and don’t know where to turn? The hospice social worker has resources that she can work with you to contact and set up possible help, including making contacts to address financial concerns.
3: Don’t push your loved one to eat.
As a person progresses towards the end of life, eating becomes less important, and often causes physical discomfort. I have seen hospice patients cry and become distressed when a plate full of food is presented to them, or when a loved one says, “you have to eat.” It is hard for caregivers to let go of eating because we equate eating with health, and so not eating is scary. This does not mean you should not offer food. Think about offering small portions of easily digestible foods throughout the day. A milkshake, a small bottle of a nutritional drink, a dish of applesauce, a small bowl of oatmeal are all ideas that may be more appetizing and less intimidating. Follow their cues. If they can’t eat it, feel free to take it away and maybe try later. But most important, don’t force and let your loved one know it is okay if they don’t want to or can’t eat. You will be there to offer comfort in many other important ways.
4: Talk to your loved one.
A person near the end of life may be completely unresponsive, or in and out of a responsive state, but keep on talking. According to William Lamers, M.D., former Medical Consultant to the Hospice Foundation of America, “Caregivers should always act as if the dying person is aware of what is going on and is able to hear and understand voices. In fact, hearing is one of the last senses to lapse before death.” Assume your loved one can hear you, and therefore be cognizant of what you are saying. Tell them you love them, you will be ok, and give them permission to go. Tell them stories and reminisce about their life. Hold their hand and be present. They will know you are there and this simple act will give comfort is ways you may not know.
5: Take care of yourself.
This may be one of the most important things you can do for the person you care for. Eat well, try to get good sleep whenever possible, exercise, and take breaks when you can. Accept help when someone offers it so that you can take a break, as described in #2. Join a support group. Read books on caregiving, of which your hospice provider will have excellent resources. There are also websites you can check out for information on hospice and caregiving. The Hospice Foundation of America is a good resource for hospice patients and caregivers alike. Remember that it is important to consider your own well-being. Be kind to yourself. You will be a better caregiver for your loved one if you take care of yourself.
There are many ways to help your loved one on hospice. It can be a very difficult time for everyone involved. Listening and planning ahead will help to give peace of mind to both you and the person on hospice. You can help increase comfort by not pushing food, but by offering small simple and gentle foods throughout the day and following your loved one’s cues. You will give emotional, psychological, and physical comfort by talking to your loved one and being cognizant that they can hear you, even if they don’t respond. And finally, you can be the best caregiver throughout the expanse of the person’s time on hospice by working to take care of yourself, especially if you ask for and accept help.