AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question Hi I was wondering if you could tell me how much longer in stage 7 my mom has....She was diagnosed with Alzhiemers in 02. she is now bed ridden, her hands and feet are contracted, just had her leg above the knee amputated tonight due to infection from Diabetes, sleeps most of the day, can no longer swallow so they are put in a feeding tube, looks at me but looks through me, sometimes agitated and other times just sleeps, answers sometimes to questions in hospital other times just looks at me...actually prayed tonight to not make it through the surgery but she did and is up in recovery....is there any way to tell how much longer? She has a long list of illnesses, diabetes, conjestive heart failure, a fib.
Answer Jean,
You do not have to allow them to put in a feeding tube. At this point, there is no meaningful chance of recovery in terms of quality of life.
Here is a good article for you to have a look at that discusses the issue of tubes. http://www.aafp.org/afp/20020415/1605.html
Having been through the dying process with my mother in law, who lingered for about two years in Stage 7, my personal take is that the highest priority is the person's comfort and dignity. You want them to be comfortable and free of pain. You also want them not to be poked, prodded, frightened, or subjected to anything bothersome. You want them to be loved and at peace.
The best option at this stage is likely to be hospice style palliative care. If I were you, I would speak to your mother's care team and find out what is available where you live - most places will offer hospice services if the person is within 6 months of the end. Your mothers condition will qualify in the majority of places. Palliative care teams are not only wonderful for the person who is ill, but can offer meaningful supports and comfort to the family. We opted for this approach when my mother in law stopped eating and drinking enough to really keep her going. We regret heart and soul that she ever had to suffer Alzheimer's, but we do not regret hospice care for at the end of her days. They were wonderful to her and to us, and we feel very strongly that this was exactly how she would have wanted it. No emergency measures, no tubes or oxygen masks or restraints, no rushing around or trips to hospital, no pain, just love, peace and quiet. She had a very gentle passing, with my husband holding her hand.
Hope this helps - talk to your mother's doctor about hospice programs, and also the pros and cons of the feeding tube or IVs - which are more likely to be a burden to her than a benefit.
I know this is very hard to watch and your heart is breaking.
