Visiting a loved one who is terminally ill, unresponsive, or struggling with cognition often challenges us to address complicated emotions. It is an unfortunately common experience. For caregivers of seniors, it is often more a matter of when they will face these visits than whether they will. With some preparation and self-support, you can be there for yourself and your loved one even when it is difficult.
Although many will suggest particular visiting schedules, like times of day or frequency, there are no hard and fast rules about visiting a terminally ill loved one. Seniors with cognition or memory issues, like severe dementia or Alzheimer's, might benefit from more regular visits from loved ones. However, that all depends on their condition, your ability to be present and attentive, and the logistics of traveling to a facility if they are not at home.
A study from the UK demonstrates that hope makes a difference in the quality of life of terminally ill patients. It might seem at first like a contradiction--how can there be hope when we know that this person is terminally ill? But hope is about more than someone recovering from an illness. After all, we cannot recover from aging.
Hope is "energizing," the UK study says, when times get tough. Hoping for better for yourself and loved ones, hoping for a peaceful passing, hoping to see other loved ones again soon--all of those thoughts help spark joy and resilience in terminally ill seniors. When we experience hope, we avoid despair. By chasing away despair with hope, we can support ourselves and our loved ones to feel better and more aware for longer.
When visiting a terminally ill or unresponsive loved one, always remember that your presence matters. Whether someone is unresponsive or unable to remember your visits, your visit still makes a difference. A visit is a two-way street--it is about the person being visited, yes, and it is also about the visitor. What do you need from this visit? It might include things like:
Knowing why you are visiting helps you know how often and how long to visit. To socialize, for example, you might come with activities--like books, puzzles, music, movies--and plan to stay for a few hours. It may not be possible to do this every day, but if you live close by, it could be a weekly tradition whenever you can. If you are checking in on your loved one's condition, you might only stay for a short while. Even so, have clear objectives and questions so that your visit can consist of more time together or so issues can be addressed.
Routines are often key when planning visits. If you can visit regularly, that is ideal, especially for seniors with severe dementia or those who have recently entered a separate facility. Establishing new routines and sticking to them will not reverse the progress of dementia, but it can help support a healthy, happy routine. Your loved one may become confused when seeing you, but they will know someone who loves them is visiting every week or every day.
Terminally ill or unresponsive seniors are sometimes unable to express what it means to see you. If possible, look for nonverbal clues that they know you are there. Eye contact, general alertness, small smiles, and more can indicate that you are seen and heard, even if someone cannot speak. They may not be able to say, "I am so glad you come to have lunch with me twice a week," but both of you will know you did.
Seniors with cognitive impairments like dementia often respond in ways that are confusing. While you visit a loved one experiencing Alzheimer's, for example, they may think you are someone from their childhood or have trouble staying on topic during conversations. Instead of trying to force their mind to conform to yours, try to conform to their mind. Smiles, gentle voices, nods, and warm physical contact--hugs, hand-holding, pats on the back--can go miles to making you both feel connected, even when they seem far away.
If you visit your loved one every day but are unable to be fully present and engaged, you might consider scaling back frequent visits and staying for longer when you do visit. Many caregivers are exhausted, emotionally and/or physically. Some have others still to care for--a loved one still at home, children, a spouse, themselves, even. You must strike a balance where you can support your loved one and yourself. When you are rested and present, you are more able to communicate and express love and care.
Be aware of your own emotional state when you visit. It is okay to be upset, sad, frustrated, confused, etc. You can express those emotions and still be present. For example, consider saying something like, "It's good to see you, Mom. I miss you a lot these days." Or you could try, "Hi, Uncle George. It's been hard to come as often because you seem confused. I love you, and I'm going to visit more often next week." Expressing yourself, allowing your loved one to express what they can, and being present are the keys to making a visit count.
Some visits may take place over a few days or at least a few hours. For those visits, choose times to leave that are natural breaks and respect the emotional limits of everyone involved.
Natural breaks like mealtimes, bedtimes, or activity changes are the best times for seniors with Alzheimer's/severe dementia to say goodbye. Often, the transition will be routine anyway. Bedtimes will be set and so it makes sense to say goodbye to visitors and prepare for bed. Leaving for a meal, if you cannot eat together, is typical, too. This can avoid melancholic good-byes (or "see-you-soon") because they are built into the routine.
Moreover, spend time ensuring that you and any other visitors are aware of your limits. If you become very upset or extremely tired, take a break and get some rest. You might return later or tomorrow, if possible, or even put feelings in a letter to be delivered another time. Forcing yourself to "stick it out" will only increase the already difficult emotions at play. Young children might have fairly strict limits, too, when visiting seniors. Without activities, snacks, naptimes, etc., children can become agitated or confused and act out. Consider the limits and routines of children visiting.
Remember that your loved one is aware of and grateful for your presence, even if they struggle to say so or to remember every visit. So long as you are present and engaged, your visit will be substantive for you both--but especially for your loved one.
Buckley, Jenny; Herth, Kaye. "Fostering hope in terminally ill patients." Nursing Standard (through 2013); London Vol. 19, Iss. 10, (Nov 17-Nov 23, 2004): 33-41.
Room, Alzheimer's Reading. "How Often Should You Visit a Memory Care Patient." Alzheimer Reading Room, 18 June 2018, www.alzheimersreadingroom.com/2016/06/memory-care-how-often-should-you-visit-memory-care-patients.html.
Sauer, Alissa. "How Loved Ones With Alzheimer's Benefit From Our Visits." Alzheimers.net, 26 Dec. 2018, www.alzheimers.net/2-24-16-loved-ones-with-alzheimers-benefit-from-visits/.
"The Gift of Presence: Tips for Visiting a Terminally Ill Family Member or Friend." Hospice of the Red River Valley, www.hrrv.org/blog/the-gift-of-presence-tips-for-visiting-a-terminally-ill-family-member-or-friend/.