Many people have questions about Hospice.
Here is a sample the letter I might send to family after I signed the paperwork for my person to be placed on Hospice Care. Maybe it will help some of you understand more about Hospice.
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Hospice has been called in.
This is due to the progression of her Alzheirmer’s disease.
All members of her medical care team are in agreement that Hospice is the next right step. [Co-Guardian] and I are in agreement.
Alzheimer’s is a disease of the brain. Anything controlled by the brain can be affected by the disease, including all physical functions. Over the past five months her disease has progressed and she is now considered to be at stage 7B on the Alzheimer’s Scale.
She cannot feed, bathe, dress, or toilet herself. She requires hands-on assistance with these things. Four to five months ago she could do these things with simple prompting.
In the past month she has declined rapidly. At Christmas she was able to walk up the stairs into our home unaided. She could rise from the chair or couch and walk to the kitchen without help. She fed and toileted herself without aid. When cold she put on her sweater. She can do none of those things now.
She is very weak. Her hands shake. She has stopped using her left hand unless prompted in order to hold her glass. She needs help walking and standing up from a chair. Six weeks ago she was going to an exercise class weekly at the local senior center. She was walking up to a half mile. She walked slowly, but she did it. She now has trouble walking anywhere without someone holding her arm to support her.
Her cognitive ability has declined quickly as well. Last May she scored 13/30 on the SLUMS Exam. Her scores had remained fairly stable for two years. Three weeks ago she scored 2/30, meaning she has the cognitive ability of a two year old.
She rarely speaks now. Her Speech Language Pathology Therapist has been working with her over the past year. Mary has noted the rapid decline since early December. She is unable to get her to speak more than a few words each visit.
She spends a great deal of time sleeping. Five months ago she rarely slept during the day.
These are all parts of her Alzheimer’s progression.
As I’m sure you know, Hospice means they will not treat her with any life saving treatments. She will not be taken to the hospital. She will be kept comfortable in her home. This does not mean death is expected in the next few weeks, but she is terminal. Hospice is indicated when a terminal patient is expected to live less than six months. If She lives longer than that, she will continue on Hospice care. Hospice is covered by Medicare.
She is still under the care of the primary care physician she has had since moving to Texas. She will no longer see her neurologist or any other physicians.
If she needs an IV because she is dehydrated, she will get it in her room to help her stay comfortable. She will not receive treatments such as surgeries, hospitalization, CPR, etc. If she needs an inhaler or breathing treatment due to Covid, she will get it to help her stay comfortable. She will not be placed on a ventilator. If she gets an infection, she will receive antibiotics. If she becomes septic, she will not be given life saving medications. She will not be taken to the hospital.
She will remain at her Assisted Living; Hospice staff and volunteers come there to see her. She will continue to live as she has – participating in activities, eating in the dining room, etc. Her same shower aide will come twice weekly. Her nurse will now visit twice weekly, this is up from once weekly. As she declines, the visits from the aid and nurse will increase as needed. All of this is covered by Medicare.
She will continue to receive most of the same medications – antidepressant, sleep aid, dementia medications, etc. Hospice will add medications for anxiety or pain as needed. Again, Hospice works to keep her comfortable as her disease progresses.
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Hospice services include: nurses, physician, social worker, chaplain, counselors, aides (for help bathing), volunteers (to sit with the person), respite care (for those still at home), and more. They provide medical equipment like beds, oxygen, walkers, and wheelchairs. They provide incontinent supplies. They help the whole family.