How Do We Help Our Father on Hospice?

Denise
Dear Denise,

Just looking into online support to help my sister and I deal with taking care of our father who is in hospice in his home. We have been alternately living with him for almost 3 months. Some days it is so easy and others no so. His long time girlfriend left him and my sister and I felt that we could take this on. He is 77 and dying from pulmonary fibrosis. He is on oxygen all of the time. Right now he is sort of in a holding pattern according to his nurse. My sister and I wonder how much longer we can continue with the same situation. It would be great if we could get some help so that we could both work more. He wants to stay in his house. He is very appreciative of our efforts but backs down with volunteers or any mention of help. I wish he could understand that the volunteers would be helping my sister and I out by being there.

Hi,

Glad you found the website.

This is a tough situation for all you, as you know. You want to be there for your dad, but you need to be other places as well. And, your dad wants help, but it's hard to accept help from anyone other than family. In addition, your dad is dealing with so many changes, especially his terminal diagnosis, that another change (like a stranger in the house helping) may just seem overwhelming to him.

The Hospice social worker can be a great asset for you. The social worker can help with discussions between you, your sister and your father about organizing care.

The issue really is coordinating care so your dad receives the best possible care at all times. Perhaps the three of you (with the social worker, who can mediate the discussion) could go over your schedules using one calendar you keep at your dad's house. Consider when your dad needs care, what type of care he needs and who is available to provide care. This will help you pinpoint the times during the day/evening that you and your sister will not be available because of work.

Once you've determined the timing and type of help needed, you can begin brainstorming. Ask your dad questions like: What suggestions can you think of to help fill these time periods? How would you like the open time slots handled?

Once you hear this thoughts, share your ideas about volunteers and paid caregivers. Then, ask him about his concerns. What worries him? How can you help him become more comfortable with outside help?

For instance, perhaps you and/or sister will be part of the first visit from a volunteer or a Hospice caregiver with your dad. Or, perhaps your dad would like to meet all prospective volunteers/caregivers before they begin. You also can assure your dad that all volunteers/caregivers are here on a trial basis--it's very, very important to you and your sister that he like any volunteer or caregiver. And, you will both work with him if he has any concerns or worries.

Keep the lines of communication open. If you feel that a discussion is becoming too heated or emotional, then it's okay to take a break. Continue to listen to your dad and his concerns with an open heart. You're all lucky to have each other.

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