I noticed that I did not see Mom one Saturday morning at 8:30 AM like I usually did looking from my house to hers. On Saturday I would go inside at noon after doing my weekly housework and get lunch and cleaning underway, but there was no sign of her. That was unusual. So I got dressed and went inside and the house was silent. I opened Mom’s bedroom door and found her unconscious. After reviving her, calling 911 and my sister, we all began a journey that would last for years.
The question to learn from? When reality crosses the boundaries of common sense you have to ask the question of how long should a person keep trying when dying?
During the past four years, my family has been wrapped up- or should I say enveloped- in a flurry of quality of life issues surrounding our mother, who at age 82, was diagnosed with the cancer that eventually took her life. At 86 she was still fighting the oncoming inevitable death with every fiber of her being. She lost her battle in December.
In the beginning, there was the three month plus hospital and nursing home stay around her initial surgeries and treatments for the January trip to the hospital to determine what was wrong. (Pneumonia, A-Fib and a mass in her colon) She was prodded, poked, manipulated, put on the operating table two different times, assigned to a nursing home, readmitted into the hospital because she had been released too soon for the first nursing home visit due to length of stay and Medicare paperwork. Then, after a couple more surgical procedures and “iffy” prognoses, she returned to rehabilitate at the same nursing home until she was returned to her own home in late spring.
By then, there was a great need for home health care and many personal changes about how to handle things in her home, the slack of which was taken up by us, her two daughters. I lived on sight behind the house in a small trailer, my sister had a home within twenty miles, so could be called when needed.
No longer able to walk on her own without the assistance of a walker, and no longer able do any strenuous housework, meal prep or personal hygiene without help, our mother decided that it was our turn to help her. This was, in many terms, a deadly prediction of what was to eventually come; the desire to die at home. My sister and I had differing perceptions of what this would mean to us, too.
Within a few months of rehabilitation at home, while she regained some of her strength, our mother started on the first of her many courses of chemo-therapy and experimental therapy for her cancer. Cancer counts would improve, she would stop, the counts would increase and she would start chemo again and so on. Each visit to the doctor or for chemo meant that one of us would drive her and stay for hours while she received her treatment. When it was time for her to consider her blood clotting issues, it meant more driving to a clinic to handle that, too. The treatments for cancer lasted another two and a half years. The extended family continued to visit, do what made our mother happy and generously adjust our own lives to accommodate the needs of our failing parent.
It was her home and it was to her specifications and her wishes that the situation progressed.
At the point of bringing in Hospice to help Mom with her final journey, the family saw that a commitment to have someone die at home was different for a parent than for a spouse with a husband or wife on site to help. It seems natural for a spouse to understand and adjust to the additional work of dying. For a family member from outside the home- when they have a home, a job, other responsibilities and a life to live, the dying becomes the focus of everyone’s life.
Hospice helps prepare the dying patient to die by discussing the idea of death, the steps of death and they handle some of the relief from pain that most hospice patients endure with their terminal diseases. They will check on the attitude of the patient, offer to counsel the patient and family members who don’t quite get it and then they will provide some additional services like a visit from the nurse, a bath aide, various pieces of equipment needed to make the patient more comfortable, (hospital bed, wheel chair, walker, oxygen, medications and supplies for hygiene) and they check on what needs the patient has as they take their final journey.
The Hospice experience….It is really important to know all of the things that you will need to know when you decide to have a family member avail themselves of this extraordinary end of life experience!
The patient’s needs and desires are the focus of the Hospice process. Families usually want to please the dying patient and go to extreme lengths to give a patient what they want. Hospice, on the other hand, uses a more common sense approach to giving a patient what they need. Want? Need? There is not a fine line between these two concepts. Pain management is a priority. As far as other, more superficial aspects of letting go of life and living, the social worker who is assigned to the patient should help with the transition of the physical to the ethereal. The people around the patient who are not professionals- yes I am speaking to family members and friends of the dying patient- need some training as to what to do and how to help their loved one.
As the body changes, the physical things that need to be taken care of are mostly about sustenance: providing food, timely medication, help with cleanliness, (clothes and clean linens, too), mobility issues and things outside the home like shopping and bill paying, etc. that are no longer possibilities for the patient.
As the patient gets closer to dying, the body changes more and there is a decreasing ability to handle toilet functions, bathing, eating and even drinking. Asking questions of the Hospice professionals about how to help with these things when the Hospice team is not in the house (hospice professionals are not in the home most of the time, so it is left to the family to pick up more and more of the time required to offer the patient help for the most basic things that need to be done) will be crucial for helping the patient.
When your parent took care of you when you were a baby, it was part of the natural order of things. It is not very natural for a child or adult child to handle things like bed pan use, diaper changing, washing and powdering a big bottom for your own parent. When you are dealing with a parent who is dying at home, you will need to handle these very things- or pay someone to come in and do them for you.
The other aspect of this is to realize that when you are old and dying, the last thing you want to do is relinquish control of your personal possessions, your ability to manage money or the fact that you are no longer able to handle a trip to the bathroom without help will often be overwhelming to the patient. When you are the son or daughter of a person who is giving up control, you will be on a roller coaster ride of emotions. There is a feeling of real serious loss in the mind of the patient that makes dying pale in comparison to the kinds of antics that will take place while the dying patient is trying to hang on to life’s vestiges of personal control! Be ready for it. It will be as hard as the dying is!
Another important part of going through the process of helping a dying loved one will be to find a support system for yourself and the patient. The Hospice team will help the patient. They will listen when you have things to say about the care of the patient, but they are not there for you. You will need to find people to talk to and ways to communicate through the process of loss, too. Friends and other family members who are invested in helping the patient and those who can be there for you as a caregiver, as well as a friend will be the way you will survive the experience.
It was a very natural thing in the past for people to die at home. It has only been the last couple of generations who have turned to hospitals or nursing homes for this final experience. Often at the end of life, old grandpa or grandma would take to their bed and with the help of family members; they would live out their last days in their bedrooms down the hall. This idea has changed, too. And it is a consideration. Setting up the patient in the middle of the living room or family room is not normal. Imagine the kinds of hygiene hijinks you will have to negotiate. Think about the people who still live there or will visit the dying patient. Make the patient’s room the center of attention and prepare to move them around for a view of the garden or a change of place, but be aware of the problems that exist when Dad or Mom sits on the pot in the living room! Just saying, it is a consideration to keep in mind as you make the journey.
Final thoughts? Yes, there are lots of things to think about. A diagnosis of terminal illness does not come with an end date. It can be fast. It can take a long time. Dying at home is not easy. Dying anywhere is not easy. Caretakers need to have support, too. The time you spend with your dying loved one can be a way to learn about life. It can also be full of heart-warming moments and heartache. Get lots of information by asking local Hospice providers, doctors, nurses and others who have experienced a time when their loved one was dying at home. Be sure that you are ready to ease the burden of your dying loved one without killing yourself. Good luck.
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