Question:

What advice can you share for caregivers adjusting to their loved one’s entering hospice? Knowing your loved one’s time is short, but trying to make the most of it at the same time.

Answer:

Thank you for your question and I think many caregivers tuning into this post may appreciate how difficult a time this must be for you and the person you are caring for. People in this situation may think about what conversations they still want to have with their loved ones, which may be more practically focused or emotionally focused. These conversations tend to evolve over time and it may be a meaningful time to revisit what their preferences are as they reach the end of their life, or what memories are important to them. For this adjustment, caregivers might try directing some compassion towards themselves to relieve the pressure of trying to make the most of the time remaining. It is still important to practice self-care and take some breathing space. Caregivers may choose to focus on the present and stay tuned in to how they can meaningfully spend this time. For example, when the mind and worry thoughts wander into the future, try to bring awareness back to the present moment by remembering that there is some time left with loved ones and focusing on something that can be done together (like listening to music as a shared experience).

Q:

I think that one of the hardest parts of taking care of ourselves as the caregivers and supporters is time. I’m so busy taking care of my father who has multiple other health conditions aside from his brain tumor that I struggle to find time for myself. I know that it’s important, but I also feel guilty when I do find spare time for myself because I feel like I should be using that time with my dad who needs it more than me. Any advice is greatly appreciated!

A:

I am sure that so many caregivers can relate to this tension between needing to provide care for someone else while also taking care of themselves. It is so normal to feel guilty when taking time for yourself, and yet it is vital. Caregivers are often at risk for becoming even more anxious or depressed than the people they care for. We also now know from years of research that caregivers are at higher risk for acute and chronic physical conditions that result from stress (everything from a cold to more serious conditions). Given the vulnerability as a caregiver, it is even more important to take whatever spare time one can find, however limited. Try to use some phrases to relieve the guilt that is felt: “by taking care of myself, I am making sure I am at my best to be a caregiver;” “taking time for self-care is not selfish, it is self-protective;” “the person I am caring for would want me to make sure I am attending to my own needs and keeping myself healthy and well.”

Q:

I struggle to find time for myself as a caregiver of my now disabled and terminal husband. We also have two little kids. Often I feel inadequate as a mom and caregiver and I hate it. I feel I’m not providing my kids with the best carefree childhood and most loving and patient care to my husband. By the time I get to the point in the day where I have some time for just me-it’s late and I’m tired so I just fall asleep. I haven’t figured out how to be content with the card I have been dealt in life. I often feel invisible and utterly alone. Need to figure out how to get out of this mindset and become more positive despite all the scary and negative things happening in my life. How do I do that?

A:

You are bringing up a point that is often so overlooked in caregiving (except not by caregivers themselves): caregiving is often not just for one person. There may be one person that is the patient, but several other dependents that caregivers are responsible for. I would imagine that anyone in this position may feel inadequate as they juggle multiple roles. Try to challenge some of this negative self-talk. For example, caregivers in this situation may ask themselves what they would (hypothetically) say to a friend in the same position (would you tell a friend that they should be more positive…probably not…we might tell a friend that they are doing the best they can, and we are genuine when we say this). In addition, notice what “shoulds” are happening in self-statements, such as “I should be a better parent with more patience.” Are these realistic and accurate statements? Can one think of a more realistic and accurate statement, such as “it is okay to lose my patience, this does not make me a bad parent.” Getting out of a mindset is hard, but Cognitive Behavioral Therapy is a very effective therapy that teaches us about the connection between our thoughts, feelings, and behaviors. It also teaches us the importance of being accurate about the full range of emotions, rather than being positive. It is impossible to just “be positive.” Finding time for therapy may be the key to finding more balance and setting more realistic expectations than the expectation to be positive.

Q:

My son was recently diagnosed with an inoperable malignant brain tumor. My mom passed away 22 years ago from the same tumor type and location. Genetic testing came back negative for hereditary brain cancer. I know that medical advancements have occurred in that time that will hopefully give him a better chance at a longer life. I felt I was doing pretty well with his diagnosis mentally in the beginning. But, I am finding myself constantly thinking about his cancer and what the future holds. I’m not sleeping well and feel very alone.

A:

Thank you for taking the time to write in. How difficult a situation this is for you and your family. First, all emotions are very normal during this time and appropriate to have given the gravity of this news and, like you said, the future. I would highly recommend seeking therapy at this time given how much worrying and intrusive thoughts are likely going on for you. Cognitive Behavioral Therapy for Insomnia (CBT-I) is a very effective therapy to improve sleep and reduce sleep disturbance. If your emotions become too overwhelming, I recommend immediate support from this hotline: https://samaritanshope.org/. For an individual therapist in your community, I recommend using PsychologyToday.com or TherapyDen.com.

Q:

Thank you so much for covering this topic! I’m the caregiver for my daughter. She is 20 years old and has medulloblastoma. She is the light of my life and watching her go through this is the hardest thing I’ve ever had to do. Taking care of her means the world to me. I am a single mother and she is my only child. I don’t have much family or friend support, but there are times when I feel like I just need a break to pause and refuel myself. How can I find support when I don’t have a support system? I have also been thinking about professional support, maybe counseling or joining a support group but have no idea where to start. Any advice you share means a lot to me!

A:

Thank you for sharing your story. You have identified something so important- every person needs their own circle of support. It may be helpful to think of support in three ways- practical support (helping with an errand, accompanying someone to an appointment), emotional support (encouragement, hope, a hug), and informational support (offering advice or information). We can also think of sources of support (who) broadly, to include family, friends, neighbors, acquaintances, mentors, religious groups or leaders, colleagues or co-workers, pets). A good exercise to try is to think about what type of support you are needing more of and who is best positioned to give you that type of support. Then, ask directly for what you need. For example-if someone is calling to offer you emotional support but you are overwhelmed with a list of things to get done, could you ask them to help you more practically? People want to help, and we do best when we are told how we can be helpful. As you mentioned, professional support is very important and sounds like it could be quite helpful for you. I would recommend using psychologytoday.com or therapyden.com as a start. For other resources, you might look at https://www.cancer.org/treatment/caregivers.html and https://www.cancercare.org/tagged/caregiving.

Q:

I’m a mom of a 16 year-old brain tumor warrior. How do you deal with setbacks? The emotional toll of everything being different? (for example my daughter took a trip to the Mall of America and was so very excited to be allowed to be able to go on a roller coaster again… First coaster she gets so dizzy and headache that she can barely walk, then she gets back to horseback riding and gets diagnosed with POTS and can’t ride again until stabilized, Has to leave prom early due to overstimulation and headache) I’m there to give her a hug and support her but it still feels like so much was taken from her. I am thankful we have become so much closer through all this but I feel like I am swimming upstream at times. And one point she told me to not be so positive because it makes her scared that I am hiding something. I am a nurse. I give bad news on at least a weekly basis. I’m kind of used to it even though it is different with your own family. I’m one hundred percent honest with my daughter but focus on the positive so I don’t break down. I try not to dwell on the what ifs but focus on living life but I don’t want to dismiss my daughters fears. How can I strike a balance between acknowledging her fears and keeping a positive outlook myself?

A:

It is so difficult to strike a balance between acknowledging fears and a positive outlook, as you state. Unfortunately, keeping a positive outlook or having a positive attitude does not always leave room for us to feel and acknowledge true worries, fears, concerns, and difficult emotions. If we don’t allow ourselves to feel those negative emotions too, they could come out in less healthy ways, and we are sending ourselves a message that we can’t tolerate these difficult feelings. Instead, if we try to find a middle ground (not negative, not positive, but accurate), we acknowledge perhaps some aspects that are positive and some that are negative, we allow ourselves to experience our full range of emotions, and to know that we can tolerate those emotions. Finding a more balanced, flexible, accurate, and realistic outlook in response to life stressors is part of the goal of cognitive behavioral therapy in the context of cancer and cancer caregiving. This might help you and your daughter feel more connected while being authentic to what you are really feeling. Hiding our true worries and concerns from each other (a concept known as protective buffering and seen often in the context of caregiving) has been shown to lead to breakdowns in communication, while open communication about true feelings and worries leads to a sense of shared coping and understanding.

What questions or tips do you have for caregivers in your own community? Start a discussion on Inspire now.