Mom has been moved into hospice care. We’ve not been told her death is near, but there is little hope her condition will improve. When it was suggested, The idea was to have a doctor who would focus on keeping her comfortable. She’s been more communicative than she was two weeks ago, but those moments are sporadic and unpredictable.
I realize what a gift my Mom gave us when she told my brother and I that if she were in a poor health situation, with little hope of improvement, we should “push grannies chest on her.” Since we don’t have a legal or moral option to help fulfill our Mom’s wishes, we are being very vigilant about how to best navigate this final phase of my Mom’s life.
I’m currently fixated on the figures released by Health & Human Services that share 7 out of 10 Americans over the age of 65 will need some form of long-term care services. Women on average need it longer (3.7 years) than men (2.2 years). Most of us hope we will die in our sleep or at least swiftly. That just isn’t the reality of our current world. A colleague that focuses on helping individuals put together their health care wishes M. Jane Markley reminded me of a tool that individuals can use to start thinking about and discussing what they might want to happen in their final years. It’s called the The Conversation Project. It was very easy for me to complete my copy. If you are caring for a loved one, how valuable would this have been to help guide you through the tough decisions you must face/faced?
I know that I have been aiding or managing matters for my parents for nearly 5 years. I was fortunate my parents talked about end-of-life issues before they were needed. It wasn’t dark or gloomy, it was just something that came up as dear family friends became ill or passed away. I was fortunate that I spent a lot of time with my parents as an adult so I knew them. Knowing what they believed didn’t make the decision on how we supported our Dad and managed his cancer any easier, but looking back, I’m confident we did the right thing for him.
Yesterday I was asked to pick up some Ensure for my Mom. I immediately confirmed that I would, but I started to feel a fracture in my belief that I was fulfilling Mom’s wishes. We have the DNR in place and is giving her nutritional supplements the beginning of the slippery slope?
When my brother was visiting he said he witnessed those caring for her working very hard to get her to eat. We spent an entire evening talking through this and felt that our Mom wouldn’t want to be coached so vigorously into eating. For several years she has bristled at any who commented on her food choices or lack of appetite. We want to follow her lead, but also recognize she has dementia and don’t intend to have her starve. It could just be that she’s having trouble swallowing the pureed food.
I reach out to both the Assisted Living Community and my hospice care case worker. “Help!” The head care manager calls me to share that as long as my Mom’s eating half of her breakfast, which she’s doing, they don’t see the need to provide supplements unless she is saying she is hungry. The hospice care manager shares that many of the individuals in their care use these supplements. If drinking them provide enjoyment, don’t hesitate to offer it. The best reason she gave was that the nutrition provided would help her skin which is now started to get red and threatens to tear. The reality is that when she’s ready, she will just stop eating and drinking. I realize the shakes might be a better option than the pureed food and dropped off a variety of flavors.
This is just another complicated issue we are facing as we want to make sure our Mom is comfortable, but not do anything that might unknowingly extend the poor quality life she is now living. Considered.
Having just used hospice for my mother in the last months of her life, I think you are doing a wonderful job of balancing the issues….
Thanks Kay for sharing…know that you are in my thoughts and prayers…no easy answers…
My mother thinks the Ensure shakes are terrible, but loves weight lifters’ drinks, which have more protein and less sugar. Her favorite is strawberry Muscle Milk.
And thank you for writing your blog about your parents. I use your posts as a sanity and reality check with my own demented and alcoholic parents.
I know your pain. Interested to see if she likes any of the flavors. I assume the dont make a “bourbon-flavored” version.😳
Thank you for sharing your journey with your parents…every day there are so many decisions to make…for now my Mom’s appetite and her ability to eat are good…but I look around at the other residents and see their struggles to eat, asking to be left alone, wishing for cool clear water instead of the thickened sort and pray that she will not have to experience that…
Its tough to watch and harder to decide if you end up there. Shes lucky tohave you!
Has your mom had the swallow test done? A speech pathologist can recommend how thick liquids and foods should be based upon swallowing ability. Watching that test performed on my dad was a real eye-opener for me regarding Alzheimer’s physical effects on a person.
Clearly, choking to death or ending up with aspiration pneumonia are not pleasant ways to go. But living with final stage dementia also is anything but pleasant. Is [perhaps] reducing the risk of a loved one dying in an unpleasant way by prolonging their miserable life with dementia just trading one evil for another, or is it an act of compassion?
Such a conundrum for caregivers! You have done a remarkable job honoring your parents’ end-of-life wishes, so go with your gut and heart.
Thanks for reminding me if another option. Rhe speech pathologist was the first one to isolate my dads issue. Wishes there were some choices that made you feel good…. As u know!
i am so sorry to read this latest news…your spirit shines through these tough discussions…my thoughts are with you, Hallie
Thank you.
That’s an interesting perspective regarding the Ensure shakes, I hadn’t looked at them in that way. I will certainly have to ponder this new way of looking at them. On a side note, I visited your Mom today. It was a short visit, but we had a very nice conversation. I didn’t bring the dogs in, I figured your Mom didn’t need that level of chaos! 😉
Thanks. She never did like pets! I was lucky to have gotten a cat.
Those are good points about eating; I haven’t been exactly in that situation yet, but it seems nature’s way that the very elderly don’t need and don’t want much to eat and gradually fade.
I still wonder if it is nature taking its course.