By Tom Knechtel
My husband Bob collapsed from sepsis, and, after two months in hospitals and rehab places, I brought him home and cared for him until he died, five months later. Here’s some of what I learned during that time.
The task of caring for someone at home can seem overwhelming. But it is manageable. We are led to believe that we can not care for our loved ones at home and that they must be in an institution. But we can care for them at home: it gives them a better quality of life, a better chance of recovering as a PD patient, and it is emotionally fulfilling.
There are people who can help you with organizing the help you will need. Birgitta Kastenbaum helped me to understand what I needed and what resources I had available to me. Before she came over, I felt like a tsunami was breaking over our heads; afterwards, I had a to-do list and felt I could do this.
Do not be afraid to tell your family and friends what you are going through. It is amazing how people will step forward and help you. Isolation will not be good for you or your loved one during this time. Post on Facebook or Instagram to let people know what is happening; some will express their sympathy by liking your post, but others will get in contact with you when they read what you are going through. Bob was a rabbi who loved classical music, and, in addition to friends coming to chant and pray with him, we had musicians who came over and played concerts for him beside his bed.
We know with PD that exercise is more vital than meds. One thing to consider with a PD patient at home: either work to keep them active in bed and moving, or hire a trainer who is accustomed to working with people with physical issues. Sarah Quick helped us; she was wonderful and was even able to get my husband out of bed and into a wheelchair, where he could exercise outdoors and enjoy some sunshine.
And do not be afraid of home hospice care. It is not a death sentence; many people go off hospice care when they get better, some go on and off hospice care, and it can be renewed multiple times. Home hospice care means that you have someone coming to bathe the patient twice a week, all your supplies (including the hospital bed) are covered, a nurse comes a couple times a week to check the patient, and a variety of other people can come to help make a comfortable environment, including religious chaplains, musicians and massage experts. Home hospice care guarantees that your loved one will not be going back to an ER or hospital, which is a terrible experience. And, though it is sometimes painful to hear, the hospice people can give you an estimate for where you are when it is clear that a patient is not going to recover. Hospice is covered either by your insurance or by Medicare, so you do not pay for it. You will need to have a doctor write a letter saying that it has become unlikely that the patient will recover; this can be your personal physician, or an attending doctor. There are many home hospice companies; ask around for people’s experiences with them. (I worked with Tranquil Care on the west side of Los Angeles.)
Caring for my husband at home during his last months was challenging and at times exhausting. But it was a deeply loving time and I treasure all my memories of it. If I have any reservations, it is only that I wish I had brought him home sooner.
Some resources I would like to share:
Birgitta Kastenbaum: https://bridgingtransitions.net/about/
Sarah Quick: (310) 271-7933
Tranquil Care Hospice: https://tranquilcarehospice.com/
Are you a care partner with a story, resources, or tips to share? Please reach out to us!