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Alzheimer's Disease & Dementia Message Board

Alzheimer's Disease & Dementia Board Index

Gogo... I have been through exactly what you are going through twice! My only regret is that I did not get Dad on Hospice soon enough. We all want this journey to last a little longer but at some point we have to make the decision not to medically treat aggressively. There is a difference between not medically treating aggressively and expediting death. Hospice will do nothing to expedite the process. Their purpose is for comfort care and a natural death as determined by your Dad's medical condition. My Dad lived three months on Hospice but my Mom lived for 18 months on Hospice. I was thrilled with the support and with mom and Dad's care.

They may stop some medications but they will go over the list of medications with you and explain to you why they are needed or not needed. Mom was on a cocktail of anti psychotics and anti depressants to calm her emotional state. She was left on all of these because they are medications for her comfort. Other medications were stopped. Hospice will explain all this to you in detail. Hospice would not pay for physical therapy. That is a rehabilitation based service and is not consistent with hospice comfort care. They will explain it all to you and be sure to ask all the questions you have.

Is your Dad still eating? Is he on a regular diet or puree diet? If Dad is eating he will continue to eat as long as he can. At some point your Dad may stop eating but that is part of the final stages. He may stop being able to swallow. He will not feel hunger as we do. His body will also stop processing food so that if he did eat he would not receive the nutrients from the food. It is not as if you are with holding food from a healthy person and he is starving. It is all part of the final process. Hospice will explain this in great detail so that you can understand that your Dad is not feeling what you think he is feeling. He will remain comfortable. They will start medications as necessary to maintain comfort. They will only use what is needed for his comfort. In my case Dad has very little. Mom needed much more to maintain her optimum comfort level. But there is never an amount that accelerates death.

Your Dad's doctor will have to sign the referral for Hospice to make an assessment. So his doctor will be aware of this Hospice referral. I had the option of keeping my parents doctor or changing over to the Hospice doctor. I chose the Hospice doctor because he would come to the facility to see Mom and Dad eliminating the need to take them out to the doctor in the later stages. I adored their new Hospice doctor!! He was the most compassionate man, well educated in the final stages of life. He also took the time to explain to me what was happening and answered all my questions patiently. As I said, I could have kept Mom and Dad's doctor if that was my choice.

Along with the Hospice doctor I also got many other services. A nurse visited with my parents as needed. Sometimes it was once a week and sometimes it was every day. That is determined by the needs of your Dad. If something happened, the facility or I would call Hospice and they would send a nurse to check out what was going on. I never sent my parent to the ER again. Even falls were handled by the Hospice nurses, and doctor if needed. I also had a care giver who gave showers and did other hands on care as needed. Mom had a volunteer that came once a week just to spend time with her. Most of the medications were paid for by hospice as well as incontinent supplies. Beyond that there was a social worker who talked to me regularly regarding what was going on, how I felt, and visited with my parents regularly as well.

Hospice is a choice. It is accepting that the end of life is inevitable. It is an agreement that you do not want aggressive medical treatment. It does include a DNR (do not resuscitate) order. What Hospice will do is to keep your Dad as comfortable as possible through the final stages. Again, they will explain all this to you at the assessment and answer any questions you might have.

Having been through the final stages with both of my parents, I will say that I am glad Hospice was there. I was so thankful for the kind compassion and the comfort they gave my parents and myself. If you have any specific questions you didn't ask, please feel free to ask them. I will answer anything I can. And talk to the Hospice assessment team, they will explain everything and answer all your questions. You will even have a phone number if any question come up later :)

Love, deb

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