Many people believe that hospice is only reserved for those with only a short time to live, like less than a month. Hospice is brought in for emergency care by the hospitals or doctors often when there is a terminal issue, but it is so much more than that. It actually is for people with a terminal illness with a life expectancy of six months or less and that six months can be renewed every six months ongoing. It is not just for “the final days.”
As we know, Alzheimer’s is a slow progressing disease spread over many years. It is certainly terminal since there is no cure. A new drug just came out to slow the progression, however it is reserved for early stage and many people are past that stage as I write this. If one is in mid or late stage Alzheimer’s (and other dementias), this is considered terminal. Even though we don’t have a life expectancy for someone with Alzheimer’s and we can’t definitely say they only have six months to live, those with mid or late stage can qualify for Hospice Care at home. The best news is that Medicare and Medicaid pay for this service and most medications. (Check with you carrier to be sure, but in my research, this is the case.) This means help in the form of a visit from a nurse one or more times a week and an aide to help with general living needs like self care (showering/shaving) and meal preparation. The home is also assessed for safety and changes are made quickly to keep the patient safe. If your loved one is a veteran there are additional benefits so please be sure to mention this. You’ll be glad you did!
There process is fairly uncomplicated to be considered for hospice. A doctor must recommend it and the hospice agency will perform an assessment in the home in most cases. There are a lot of questions asked and the person with dementia and their family is consulted about the need for assistance. If the patient does not qualify quite yet, the assessor may recommend palliative care.
Palliative care is about treating the patient’s mental and physical wellness and introducing non medical and medical interventions to improve the lives of the PWD (person with dementia) and their caregivers. There is access to social workers, pastoral care and other aids to daily living. Once there is a change in the medical status of the individual enrolled in palliative care, a new assessment can be done by the doctor and the decision for hospice care may be made.
Palliative care has recently become a standard of care based upon patient and family input to support the needs of the patient spiritually as well as introduces healthy habits like healthy eating and exercise. These simple additions to lifestyle may delay the need for hospice care in some cases. Palliative care can stay in place until hospice care is fully necessary as deemed by their professional staff.
Once hospice care is deemed necessary, the patient must agree to forgo any lifesaving care. Care at this point becomes to keep the patient comfortable. Sometimes medications are taken away that are no longer needed or even making a difference like some Alzheimer’s medications or blood pressure/cholesterol medicines. A DNR is issued and emergency calls must first come through hospice to record the incident (like a fall) and hospice immediately calls for the local rescue squad. It is certainly a shift in thinking to call hospice first rather than the EMS, but hospice is trained to act fast so no time is lost.
Hospice care must be re-evaluated every 6 months, but can continue for the life of the patient, for any length of time. If, at any time, the patient and family decide they do not want hospice care any longer, it is canceled and the patient returns to palliative care or standard medical care they had prior to hospice. The patients and their families are in control of the decisions.
My personal experience with hospice and palliative care has been excellent. I have seen firsthand the care my father AND mother, his caregiver, receive on a weekly basis. My parents were uncertain about hospice and thought that is was like giving up, but soon realized that the caring staff and doctors became like family. We have been in hospice care for a full year now and I can tell you it has changed our lives. I worry less about them knowing someone is checking on them three days a week when I cannot be there. They also get added social interaction, and my dad’s medical needs are always being adjusted to best serve his wishes to remain at home. Daily aids to living are brought in like raised toilet seats, walkers, wheelchairs and more which are all covered by Medicare. Meds that were no longer helping him were taken away (simplicity) and he has had great care from passionate caregivers and so has my mom.
My advice? Don’t wait to call and learn about your local hospice options even if it is just to plant the seed that hospice is just not for the very end of life. They do a beautiful job of explaining the difference between palliative and hospice care. Palliative care is equally wonderful and gives that extra care both spiritually and medically until a decision to enter hospice care is made. The hospice intake staff spoke directly to my parents and addressed their wishes, a conversation I was having a hard time having with them. They both wanted a DNR and we made it official. I am sure I could not have done that myself. Their wishes will be honored and they are in control of the decisions. I help with explaining things and let them decide and it has brought us closer than ever before. Hospice/Palliative care has been a blessing and I am very glad we didn’t wait too long. They have stayed in their home longer than I ever expected and they are happiest there. Don’t wait too long. Make the call, ask the questions and do your research. Good luck. If I can help you, please reach out.