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When you get the news that your loved one is terminally ill, you can expect sudden and unexpected changes to take place in your lives. Your daily living routines may be upended as you try to accommodate your spouse’s declining medical, physical, and emotional condition.
Living with a terminally ill spouse is not only physically challenging to you as a caregiver but spiritually and emotionally draining as well. You two need to have frank discussions about what lies ahead for your future, starting end-of-life planning, and how your spouse wants their last days to unfold.
The following tips can help guide you how to live with a terminally ill spouse.
1. Allow Yourself to Feel Grief
Grief is a natural reaction to loss. Panic, anger, sadness, helplessness, regret — all these are feelings associated with grief. Knowing that your spouse has measured days ahead may cause you to feel the pain and sorrow of having already lost them.
Feeling this way is normal and expected as you learn to accept the news that they’re dying. Allowing yourself to feel grief will help you accept the loss of your spouse to their illness. It may not lessen the pain, but it will help you process your grief when death finally comes.
2. Accept Your Differences in Grieving
Everyone’s grief reactions are different. Your spouse may process their grief differently from yours, and their reactions to coping or responding to the news will vary from yours as well. Understanding that you are different and that how you grieve can’t be compared from one person to the next will help you maintain a more grounded relationship in the midst of receiving the bad news of a terminal condition.
Try to understand that your spouse may not get it when all you ever feel like doing is crying. They may not know how to respond to you. In some cases, a constant state of grief may make the other person feel guilty for having a terminal illness, and the added stress it brings you.
Keep in mind that you may also not understand why the news isn’t hitting them as hard as it is you. One of the reasons couples fight in these circ*mstances is because they fail to see things from their spouse’s perspective.
3. Learn to Let Go
Anticipatory grief is the type of grief that you feel over a future loss. Whenever a loved one’s life is being cut short due to a terminal illness, your mind starts to process the loss as it anticipates this future thing happening. In this case, your brain is preparing you for your loved one’s death. You’ll start to grieve their loss even before it happens.
One way of dealing with anticipatory grief is learning to let go of them while still maintaining hope. You will need to redefine what hope means to you in the context of losing your loved one. It may mean hope that they’ll move on from their pain and suffering or hope for meeting up in an afterlife for some people. When you allow yourself to let go of your loved one, you open the way for grief to take shape and make room for healing.
4. Adjust Your Expectations
A terminal illness diagnosis will change your way of life from the moment you get the news. You’ll not only have to continue to do all the things necessary in day-to-day life, but you’ll have the added responsibilities associated with dying. These may include:
- Getting all end-of-life planning documents in place
- Arranging caretakers
- Scheduling doctors appointments
- Ensuring proper medical care and treatment
- Figuring out added financial responsibilities
5. Live in the Present
None of us have the luxury of knowing how long we have to live. Most of us hope and prepare for a long life ahead of us, but no one can predict when death will come knocking. When your spouse has been diagnosed with a terminal condition and given just a few days or weeks to live, living in the present becomes all that much more critical.
Consider living your life in the present without placing too much emphasis on what the future holds. Focus on bringing love, joy, and happiness to each day as it unfolds. When you focus your energy on today, you can feel less stressed and anxious about what tomorrow will bring.
6. Communicate Openly
A terminally ill person may have many end-of-life questions that are better left for a grief counselor or chaplain to address. However, not knowing the answers to some of their most challenging questions doesn’t mean that you should avoid talking about death and what comes next for them and for you.
Learn to set aside your fears regarding talking about death so you and your loved one can effectively communicate with one another about what you both want, need, and expect at the end of life. You may not know what to say to a terminally ill loved one, but the more you talk about what you both are going through, the easier these conversations become.
7. Spend More Time Together
One of the most precious gifts for bedridden patients is the gift of time. Nothing can compare to giving someone who’s dying your time and attention. This can be a very lonely and difficult time for them spiritually and emotionally. Spending quality time together in their last days will help them make an easier transition in the dying process.
Whenever you’re pressed for things to talk about, or you simply cannot think of what to say, consider talking about all the good times you shared. Don’t be afraid about bringing up the bad times and talking about those as well. This may be a perfect opportunity to clear up past misunderstandings, make up for things that you should’ve said but didn’t, or simply to make amends for past hurts and betrayals.
8. Don’t Lose Hope
Hope can mean a lot of different things depending on the context. When your loved one’s nearing the end of their life, it can be difficult to remain hopeful about what the future brings. Hope doesn’t always mean a rosy future. Being hopeful can also mean placing faith in whatever tomorrow brings. Have a conversation about redefining what hope means to you both as you face your loved one’s end of life.
When dealing with a terminal illness, hope can be measured by the time left to strengthen or mend relationships, explore your spirituality, and rise above despair.
9. Help Create a Lasting Legacy
A person who’s facing the end of their life may be afraid of dying and not having fulfilled their life’s goals or mission. Find the time to sit and discuss how they envisioned the end of their life and how they view their legacy continuing beyond death.
You may want to arrange for your spouse to attend an end-of-life retreat or similar conference so that they can explore their hopes, feelings, and desires as death approaches. Here, they can talk openly about their fears regarding death and the dying process with others who are faced with a terminal illness.
Never assume you know how your spouse feels or how they see things for their future. Discuss these things openly with them and offer your assistance wherever possible.
10. Seek Support
Living with a terminally ill spouse can be challenging and wreak havoc on your emotions. You may try to maintain a strong front for your loved one and family, but it’s not necessary to go at it alone.
The pain of seeing your loved one go through this can seem almost unbearable. Seek support from your circle of friends and family or a professional counselor. There’s nothing shameful in needing a little extra outside support to help you through this difficult time.
11. Understand Your Emotions
When caring for a terminally ill spouse, expect your emotions to fluctuate. You’ll have some good days and some bad ones, and sometimes you’ll experience a range of emotions on the same day. This is natural when caring for a spouse whose medical condition is expected to deteriorate as the days go on.
The caregiver spouse almost always goes through several phases as the ill spouse’s physical condition declines. In the beginning, you’ll want to do everything possible to provide love, comfort, and support to your spouse. You may experience feelings of guilt and helplessness during this phase.
Gradually it’ll shift to a phase of sheer exhaustion where you’ll feel as if you can no longer continue caring for your spouse. This is typically when you’ll reach for outside help and support. The final phase comes as death approaches. Here is when you begin to feel guilt and regret for not having done more for them. Remind yourself that all of these feelings and emotions are a natural part of the grieving process and are to be expected.
Life With a Terminally Ill Spouse
The time that you have left with your terminally ill spouse can’t be measured nor guaranteed. Live each day as if it were your last and cherish the time that you have remaining. Enjoy the small pleasures of the here and now without emphasizing what tomorrow will bring. Your bond and relationship will strengthen the more open you stay with one another regarding your needs, wants, and hopes.
If you're looking for more ways to support a terminally ill loved one, read our guides on blogs about terminal cancer and coping with a terminal illness.
