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About Mary 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!

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Alzheimer`s Disease - What to do now?

Expert: Mary Gordon - 11/3/2009

Question
My Mother (78) was diagnosed with Alzheimer's in 2005. Since then she's had stints put in her heart and 11" of her colon removed due to cancer. She's been mostly healthy except for the Alzheimer's since then. Now she's walking from one bed to the other all day long, barely pausing at any time. Nothing deters her from this routine. She sleeps all night with no problems. She goes to the bathroom frequently on her own or with prompting. She's had a few uncontrollable bouts with very loose stools. She absolutely refuses food (gets violent) and yesterday began vomiting after any liquid. We've been trying Boost, but she'll only take a few sips. She is quickly loosing weight. My step-father can't even get her to keep her meds down most of the time. She complains of back and stomach pain - she spent a week in the hospital where they could find no concrete reason for the pain. Then a week in rehab, where they dismissed her for being uncooperative and getting into other patient's things.
My question is, is there anything we could do to alleviate her suffering? She complains constantly from various pains, especially back and stomach, and calls out for help. Should we get strong pain pills for her or would that accelerate the Alzheimer's?
She's not really followed the "normal" progression of Alzheimer's, and it is terrible to watch her in such pain - it's very real to her. Can you give us any suggestions?
Thank you for this place we can get honest answers and find others who share our problems. It's the best that I've found online!

Answer
Hi Dianne - it's a very personal decision - but at what point would your family feel ready to consider palliative care - in other words, at what point do you go for comfort measures to keep her out of pain and distress, and just strive to keep her happy, content and peaceful. Here is a link that explains what the purpose of this approach is and where to look for resources.

http://www.getpalliativecare.org/whatis

The vomiting and abdominal pain is not part of her dementia. Something is going on, whether it is an infection or a return of her cancer, or something else entirely. No matter what you decide, she should not be in pain, and the doctors should be working with your family to prevent her suffering. She may not yet qualify for hospice, but she certainly can benefit from the palliative approach - and if the doctor won't help you keep her more comfortable, it's time for another doctor.

Given her complicated health issues that are layered on top of her progressing dementia, things are going to get more and more difficult from here on in. As you know, she can't understand or cooperate with tests and treatments. She can't answer questions or follow instructions. Medical procedures will disorient her, frighten her, hurt her - and completely bewilder her. At some point, you have to decide if you really want to try to diagnose or cure any health issues she develops, or put the emphasis instead on just loving her and trying to give her the best quality of life - which includes feeling secure and safe.

By this I mean - think deeply about what your hopes for her are when it comes to medical care. You have to weigh every test and procedure in terms of the suffering it may cause vs. the suffering you hope to save her from. Under what circumstances would you want her hospitalized again? If her cancer came back, would you want her put through treatments? If her heart stopped, would you want her resuscitated? If she got a pneumonia, would you want tubes and aggressive treatment ?

It's a difficult point to be able to get to emotionally and spiritually when we love someone and wish we could restore them to health. We live in a culture that has trouble with mortality. We think we should be doing something to fight illness right down to the wire. We feel guilty and neglectful if we elect to instead sit with our loved one and watch the tide go out together. I know it's something we struggled with with my mother in law. She survived a full two years in the last stage, essentially bedridden and unable to do anything for herself. She didn't know anyone, couldn't talk, was incontinent, was spoon fed - and she slept all day. Unlike your mom, Dolli was extremely healthy other than her dementia. You may think it seems cruel, but the natural end of dementia is so completely brutal, we prayed for something to carry her off mercifully before that. It was not to be- she survived right to the end of dementia, living out her worst nightmare.

I understand your worry about doing anything which could potentially aggravate or accelerate the Alzheimer's, but you know that it will progress no matter what you do or don't do. It's inexorable, and a one way slide down a hill that gets steeper as it goes. What she has is right now. Given that reality, ask yourself - which seems kinder and more loving - a longer life with more suffering and distress, or perhaps a shorter one where she is comfortable and peaceful.

Beyond the physical pain, it sounds like she is very agitated and aggressive - and a good doctor should be able to help you with that as well. There are newer medications that can help her feel less upset and not make her into a zombie. An example is citalopram (celexa)
http://www.caregivershome.com/news/article.cfm?UID=1522

You may have to try a couple of different medications at various doses before you find the right one - but it may also help with her restless pacing. It can't be pleasant for her to be so keyed up.

I know this is very painful and hard on everyone who loves her.

Thinking of you.

M

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