Following are two links to life support options for people with serious illness and facing death.
Understanding the options that may be presented to you or your loved one is easier if you have the information ahead of time…when there is less chance for emotions to drive the decision.
PBS.org Frontline-facing death gives the reader guides to “Kinds of Life-Support Decisions” (Ventilators, Nutrition and Hydration, “Do Not Resuscitate” (DNR) Orders) Including: “What to Know About Dying With Dementia” and “Family Conflict and Dementia”.
Eating and Not Eating as end of life approaches by Barbara Karnes, RN, end of life educator. Her web site has tons of valuable information on matters concerning the dying process (and see the video I have previously shared from Barbara Karnes).
As of March 12th Mom has been in Long Term Care for one month. We didn’t expect it would be easy by any means but this is beyond what I could have imagined. You can anticipate many scenarios but not the emotional rollercoaster that will come with it. I can’t speak for my Dad, but you just have to look at him to see the toll this has taken on him. I can see that he wants nothing more than to do the best he can for Mom and even gave another try at having her at home again. The sad truth is that she doesn’t belong at either. She still has many “in” times that make you want to take her home. But then you see her so confused and know that she requires too much care to live at home again. What a heart wrenching dilemma with no right answer.
There is so much information out there about how to handle dementia sufferers but it doesn’t really prepare you for what reality serves up. How can it? You can’t paint everyone with the same brush any more than you can use the same strategies on all children. People are individuals with their own history which colours their present experiences. I’m lost, sad, scared, frustrated and angry at this ruthless disease that has stolen my mother from us (and all the other countless people watching their loved one fade away). You can see it in their eyes. I can’t really explain that but I’m sure I’m not the only one that will tell you that.
I am also angry that in this day and age we haven’t come up with a better plan to care for people living with dementia. The more I see the more questions I have. There must be a better way!
As a small example, I will share the events of Sunday:
I went to see mom at lunch time to sit and have lunch with her. (Yesterday one of the ladies that normally sits at her table passed away. She was a beautiful woman, traveled the world and was still able to talk about it. She and mom could talk to each other, where as the others at the table are unable.) As I was on my way in, I ran into a man that told me that Mom has been upset and looking for her husband and daughter. He said she was standing on the window ledge and banging on the window yelling. He helped her down and tried to calm her. I thanked him and went in afraid of what I was going to find. Mom was in the dining room but told the staff she didn’t want to eat. I greeted her and she immediately took my hand and told me we had to hurry up and she took me to her room. She had packed her loose belongings in the basket of her walker and said I was taking her to her husband. I tried to stall in hopes that it would pass. (compassionate fibbing, diversion, etc) No one trains you in how best to deal with these situations. We are told the staff are fully trained and the ones in this locked area have special training with dementia … Anyway we dance around the subject (mom is not giving in & she has lots of ideas for me on getting out) But I am finally able to convince her to go down to the lounge at the end of the hall where we can see him come in. He said he was coming so he’ll be here. I don’t really have a plan here other than hope I can somehow engage her in a conversation and distract her long enough to forget her mission. She was in such a state she had no plans of talking or doing anything but getting out. So I don’t know what else to do but call Dad. I was hoping for a nice visit with Mom and let Dad get some much needed rest. I tell her I’ll find out if he’s on his way cuz we don’t want to miss him. Help…someone please. Can’t anyone hear me screaming in my head? I do get ahold of Dad. He’s going to come right away. I feel horrible for calling Dad over, shouldn’t I be able to handle this? And then, as we are waiting she starts to get teary and says…”Did you know they want me to stay here for the rest of my life?” I was dumbfounded. (It certainly gave me the answer as to why she was in such a panicked state) How do I respond? It broke my heart. Thankfully I escaped having to respond because Dad walked in the door and she got up to go to him for a hug and a kiss.
I don’t have any idea as to what the answer is for people living with dementia…all I know is….there has to be a better way!
If you’ve made it to the end of this long post, I thank you for reading it.