Hospice Care: A Personal Perspective
by Joel H. Straussner, Ph. D.
My wife is 62 and has Stage Five Parkinson's Disease. She is bedridden and totally dependent in every way imaginable. Her Parkinson's won't kill her but complications from this disease will. She may die in the next six months because of these complications. She is now in home hospice care and I am her primary caretaker.
There are two forms of hospice care. One takes place in a facility where a patient can receive 24 hour care. This facility can be in a hospital type setting or a bed (s) in another setting not entirely devoted to hospice care. The other type of hospice care takes place at home. A caretaker, like me, transforms a room into a hospital type ward consisting of a hospital bed and other equipment as needed to take care of my wife. All hospice care no matter where it is given, is palliative or comfort care. Hospice care is not designed to cure anything. It is designed to make both the patient and caretaker better able to cope with a patient's terminal illness.
It is as if calling this type of help, "comfort careď would make it more acceptable to to people like me. It doesn't. All hospice care, no matter where it takes place, sucks. Someone you love is going to die. There is absolutely nothing you can do about this.
All hospice care for both the patient and caregiver is depressing. It is extremely hard for me as a care taker to look at my sick wife in her hospital bed and reconcile her with the woman I married. Sometimes I feel like I just want run away and hide. Sometimes, it just overwhelms me.
Hospice care is terrifying for my wife. As a nurse, she knows what is happening to her. While at home, I can at least comfort her and try to reassure that I will always be there for her. I couldn't say this if she was in a hospice facility. It would be like throwing her away because she is sick. I couldn't do this. I trudge on. Sometimes I resent having to provide her with the intensive care she needs while still trying to do all the things necessary run a household. I get some help from a hospice agency. I have hired someone to come to take care of my wife for four hours four days a week. The rest is up to me. Home hospice care because of its intense needs, becomes the focus of just about everything I do. Because I am so close to my wife and see as well as hear everything happening to her, I can't ignore her or not respond to any request no matter how trivial.
Even now, I had to stop writing this article because I thought my wife was calling me. She wasn't but I have become very sensitive to any sounds indicating a problem. I have to stop what I am doing and make sure she is safe. I never want her to feel that she is alone and abandoned
Home hospice is do-it-yourself hospice care. I can call my wife's agency and they are responsive to most of my calls for help. The people they send are generally very good and make me feel that my wife is in good hands. However, when it is 3 a.m. and my wife needs a change of diaper because she has diarrhea (yes, adult diapers), there is no one I can turn to and say now it your turn. I haven't changed a diaper in 40 years. Home hospice has taught me new skills. Thanks.
There you have it. The choice is placing someone you love who is terminally ill in a strange place cared for by strangers providing comfort care or taking care of your loved one in a familiar setting with outside help. Either one is not easy decision to make. Hospice in a facility is easier for the caretaker to deal with but can be much harder on the person you love, especially if they coherent enough to understand what has happened to them.
Home hospice is hard, frustrating and very draining. Home hospice is not for the faint of heart. But I wanted to be with my wife as much as possible. No matter how long it takes, at least I'm there. I can do something to make her feel more secure and less afraid.
Home hospice care is very depressing. At times, we have to remind each other by providing care at home, we are not helpless. We still have some control over what is happening to us, if not over the disease itself. This is a lousy situation for anyone to be in. You hav to deal with the feelings of helplessness, anger and depression while being both loving and caring. Not an easy thing to do. My efforts as well as those of my wife, go a long way to help us both deal with the hopelessness of this situation. No matter what, I have to believe that there is still something I can do to help her.
Maybe it is my inherent optimism that helps me cope. Talking to others helps as does writing this piece.
Sometimes, maybe it is the scotch I drink that helps me fall asleep. All I can do is to keep trying my best and hoping I will have the energy to do this.
P.S. We still argue as a couple. We even fight as a couple. We make up as a couple. We will get through this together as a couple.