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!
Expert: Mary Gordon Date: 9/8/2005 Subject: Pain associated with end-stage Alzheimers
Question My mother (81 yrs young) is in an Alzheimer's residence, with hospice. I have heard them refer to her organs shutting down, (she is not eating....) and that she would be kept comfortable. I was also told that she will be aware that things are shutting down. Is she going to have pain? Mom's still pretty verbal, although her memory is totally shot. Most of the time she thinks I'm her mother, or her younger sister, or like last night, she thought I was somebody who had already died. And she was still able to converse with me. This pain issue, and organs not functioning has me concerned. Mom has a DNR, does not want nutrition or hydration when it gets close.....she's tired, and just wants to die. Could you please help me understand the above? Thank you.
Answer I know what you are going through - this is a very scary time because you are facing the unknown and want to do the right thing. Your mother is so lucky to have such a loving daughter looking out for her and involved in her care. You are a living testament to the value of her life - she must be so proud of you.
I doubt very much she will be in any pain - people in this stage of Alzheimer's don't even seem to feel hunger and thirst. Even with careful handfeeding and encouragement, they tend to take in less and less as time goes on, and it doesn't seem to bother them at all. I'm not sure if the brain damage means they don't feel hunger, or perhaps feel something and just don't know what it is. They loose weight, they get weaker, they sleep more and more, become less and less aware until they just gradually fade away.
You may be reassured by talking to hospice staff, and I'd encourage them to book some time to discuss palliative care with them. They never normally allow someone to be in pain. Palliative care includes measures (including pain drugs if necessary) to make sure the person is as comfortable as possible, to make their last weeks peaceful and pain free.
Usually what happens in those last days is that their kidneys shut down - and kidney failure is not painful. That failure is the start of the final spiral, since it makes them less aware, and ultimately their hearts and lungs fail as well - also not painful.
When we went through this with my mother in law, we truly did regard this stage as the slow but inevitable going out of the tide. We knew we had already lost her in every way that mattered and that she would not have wanted us to hold her here. In a real way, she was already gone. Looking back on her very gentle death, my husband (her only child) feels very strongly that the choice was the right one for her and for him - that he did the right thing. He regrets that she had to go through any of it, that she got Alzheimers, that some other illness did not mercifully carry her off prior to the last stages - but he does not regret refusing tubes and allowing nature to take its course. She did not seem to be suffering at all - she just sort of faded away over a period of a couple of weeks after she stopped eating. He was there with her at the end, and it was so gentle and quiet. I wonder if what was left of her just decided she had struggled enough and it was time to go.
I suppose one thing you could do is to talk to your family members and her doctors and other caregivers about what might come next and what the options might be. You are fortunate to know your mother's wishes - she has given you a gift that will help you when things get rough - you will know heart and soul that you are doing what she wanted, and that will give you courage and resolve.
At some point, despite our desire to fight death, it seems to me there really are worse things than dying. For me, that would be living on in the twilight, caught between two worlds - and really being held here by loved ones who aren't ready to let go. Your mother has enjoyed a long full life. If you could restore her to health, I know you and your family would move mountains - but it isn't to be, and perhaps the best way to show your love is doing exactly what you are all doing - standing by her, holding her hand, respecting her wishes, keeping her comfortable and letting the end of life come. It doesn't have to be frightening. It is a priviledge to be there for them at the end.
Hope this helps. Hang in there. I know how hard this is. If I haven't answered your question well enough, get back to me.
