A palliative care nurse shares her opinion about providing end of life care for your husband at home versus in hospice. She describes end of life care issues, problems, and blessings. When you said “til death do us part”, you probably weren’t thinking about providing end of life care at home for your husband.
I can’t tell you everything you need or want to know about giving end of life care to your husband in this article. I encourage you to read Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley. It’s filled with practical advice on responding to the requests of a dying husband or family member, and helping them prepare emotionally and spiritually for death. This book will show you how to help your dying husband live fully to the very end.
I recently attended a workshop sponsored by the North Shore Palliative Care Program, led by a palliative care nurse. She outlined the pros and cons of providing end of life care to your husband at home, instead of in a hospice, hospital, or other facility.
“A palliative diagnosis is a gift,” said the palliative nurse who led the workshop. “It’s time to build a legacy, reconcile with family, say what you’ve always wanted to say, and be creative with the precious time you have left – if you approach it thoughtfully.” She also said that an “end stages” diagnosis is a journey that offers people a chance to make the most of life and prepare for death.
She was comparing the diagnosis of a terminal illness to a sudden death, such as being hit by a car. Some people would prefer to die quickly, while others want the chance to say good-bye, tie up loose ends, and end their life with thoughtful planning. If your husband has received a palliative diagnosis, this is your chance to end your marriage with compassion, love, and grace.
Benefits of Providing End of Life Care in Your Home
Here is a list of the benefits of taking care of your husband at home after a palliative diagnosis, to help you decide if you are prepared to offer him end of life care.
End of life care at home avoids the disappointment of not getting a hospice bed
The reason palliative care programs are becoming more popular is because there aren’t enough hospital and hospice rooms to offer end of life care. If you prepare to take care of your husband at home, you won’t be disappointed to learn that the wait list for a hospice bed is years long.
Support from a specialized palliative care team
I live in North Vancouver, home of the North Shore Hospice Society and the Palliative Care Program. Their team includes a palliative doctor, palliative liaison nurse, social worker, physiotherapist, occupational therapist, chaplain, patient and family support counsellor, patient care coordinator, music therapist, and a volunteer coordinator. If you provide end of life care for your husband at home, your community may have resources like this to help you.
Your husband can die in peace, at home
Not many people want to die in an institutional setting such as a hospice, hospital, or care facility. You know your husband’s habits, quirks, favorites, lifestyle, etc – so you might be the best one to provide end of life care for him. Home might be the most natural, comfortable place to die. You can also address spirituality in your husband’s palliative care at home.
Palliative nurse and doctor visits
Specialized health care practitioners can visit your home, supporting you in any way you need (ideally!). The palliative team helps with medications, such as teaching you how to administer prescription drugs through ports. The nurse brings a mini-pharmacy when she visits, and can call the doctor for an emergency prescription of the medicine you loved one needs. This saves you a trip to the pharmacy.
Knowledge that your husband received loving care until he died
Some wives feel guilty that their husbands die alone in a hospice or hospital. If you provide end stages care at home for your husband, you can rest knowing that you did all you could to help him leave this world peacefully and comfortably, embraced by familiar people and surroundings.
Continuous care for your husband
Almost all hospitals and some hospices have an aggravating lack of continuity of care – the doctors and even some nurses change constantly. Every week, someone new is taking care of your husband. Providing end of care support at home will ensure consistency in your husband’s care.
More control, choices, and freedom to make decisions
If you’ve ever been in a hospital, hospice, or care facility, you know that there is very little control or choice for the patients. At home care gives you more freedom, from what to feed your husband to what to watch on television.
Some home care support
There is no guarantee you’ll get home care workers to assist or relieve you. However, the palliative nurse at the workshop in North Vancouver said some patients get up to four hours a day of free assistance from a health care practitioner. This home care support depends on the patient, illness, and even the organization that offers the palliative care program. If you’re thinking about taking care of your husband at home until his death, research the home care options and resources.
More positive outlook on death and life
The palliative care nurse said end of care support at home brings positive feelings of dying, for patients and families.
Related reading: 12 Gift Ideas for Someone Who is Dying.
Drawbacks of End of Life Care for Your Husband at Home
Here is a list of the drawbacks and end of life care issues, to help you decide if you are prepared to be your husband’s caregiver.
Feelings of anxiety, fear, and inadequacy
This is probably one of the biggest drawbacks of taking care of your husband at home after a palliative diagnosis. You may not be a nurse or have any interest in nursing him. I know I’d be nervous about medications, feeding, changing, etc. I’m not a natural nurse, and I don’t know if I could care for my husband at the end of his life.
If you are considering providing end of life care for your husband, read Dying at Home: A Family Guide for Caregiving. It’s a Johns Hopkins Press Health Book, and can help you take care of your husband’s final days.
A completely consuming, overwhelming “job”
If your husband is quite ill (which I assume he is, because you’re searching for end of life care issues for your husband at home!), he may need constant care. If he lives for months or even years, you may feel like your caregiving role will never end. This can negatively affect your mental, emotional, physical, and spiritual health – not to mention your connection with your husband.
Lack of support or help
I’ve participated in many support groups for caregivers, and I know that not all family members participate equally when caring for an ill loved one. If you’re providing end of life care at home, you may find yourself resenting family members who don’t do as much as you do.
Unanticipated expenses, such as private home care agencies
It’s expensive to hire home support workers to help relieve the burden of a husband’s palliative care, and you may not want to use your retirement money to pay for a private home care agency. It can seem overwhelming to care for your husband at home until he dies. This is why it’s so important for us to plan for our husband’s and our own end of care as early as possible – financially, mentally, and spiritually.
Dysfunctional family dynamics
The palliative nurse said that sometimes it’s better for a husband or family member to live out his remaining weeks or months at a hospice because the family dynamics are hostile, angry, or negative. The last thing your husband needs at the end of his life needs is tension. This can be a big issue when deciding if you should provide end of life care for your husband at home or in a hospice.
Another thing to consider is your physical surroundings. Some houses, condos, or apartments simply aren’t equipped to house a palliative patient. This makes dying at home very difficult, or even impossible.
It’s difficult and sad to think about hospice versus home when you’re considering end of life care for your husband. If you feel depressed or overwhelmed, please call a doctor, distress line, or someone you can talk to. It’s so important not to face this huge chapter of your life alone.
For help after your husband’s death, read What to Do When Someone Dies.
I welcome your thoughts on providing end of life care at home or in hospice for your husband. I can’t offer advice, but it may help you to share your story.