I’m sure this has been discussed on this site before, but it has happened again over in my neck of the woods.
Today was interesting. For starters, I pulled a back muscle in the morning while doing a light workout–in an attempt to be “healthier” and to “take care of myself.” Sigh. Also, my Gram’s daytime caregiver was sick, but we were lucky enough to get our weekend gal to come in for a few hours….so I could work-out…and…hurt myself. Better luck next time, I suppose.
More importantly, today was the day we met with my Grandma’s home health nurse and two nurses from Palliative Care. As I sat there with an ice pack on my back, I watched my grandmother get visibly upset at the idea of Hospice and Do-Not-Resuscitate orders, wishing I could do more to comfort her. She refuses to let Hospice enter the picture, even though it would probably help us all out. To her, Hospice = Imminent Death, no matter how many times it is discussed.
The worst was watching her stare at the nurse as she tried to explain that if any of us tried to use CPR on her, the damage could be fatal. This has been explained to us all before, but it never seems to matter–Gram always says she wants us to try and save her at any cost.
I’ve always assumed that it would be the EMT’s in that position, that it just wouldn’t happen, or that she’d be in the 2-3% that would survive the chest compressions. I suppose if I think about it realistically, it doesn’t make much sense. Her home health nurse said that she didn’t want me to be the one to break her ribs and inadvertently kill her. That goes without saying, but it did give me a moment’s pause to really think about what it would feel like to be in that position: trying to save my grandmother while breaking her bones in the process. I can’t think of anything more traumatic. I have been present during T.I.A.’s and found that giving her a sternum rub to wake her up was stressful enough. I can’t imagine having to do CPR with her in such a fragile state.
After everyone had left, my grandmother said to me that she did not enjoy the company and that she “felt like they were planning my funeral.” Knowing her, this could be an honest confession, or it could be a slight jab intended to make us feel guilty for speaking of such things. Regardless, how does one attempt to have these conversations without them sounding morbid and without causing offense?
Palliative agreed to have their Chaplain come out and speak with her, and we’ve had other ministers over as well, but it doesn’t seem like any of them have really worked with her to help her talk about the fact that she is dying. I suppose it’s easier to not talk about it since she doesn’t have any terminal illness but is instead just in declining health. It’s harder to talk directly about something that is sort of elusive.
So how to handle such things? I feel I should defer to those who know best, such as clergy, but the ministers we’ve had visit with her seem to stick mainly to niceties rather than getting to the meat of the issue. I know it’s hard to talk about it, but must we all remain in denial and talk of the D–word only in hushed voices?
What have the rest of you done in situations such as these?
Performing CPR on someone who is fragile would certainly be a problem. I hadn’t thought about what to do if something happened to Dad other than calling 911 and making sure he took his nitro if that was needed. Fragile bodies wouldn’t be able to take the pressure of CPR. I understand your grandmother’s concern about the conversation, but it is also a necessary discussion.
I hope that when my time comes, after spending as much time reading and writing about caregiving as I have, I can understand what my daughters are going through in making decisions about my care.
Great post – thank you for giving us something to consider in the care of our own family members.
Hi–I’m so glad you’ve started this discussion. I’m looking forward to hearing from others–because this is a tough one!
Just a suggestion: Could you say to your grandmother: “I’m worried that our conversation yesterday with the nurses didn’t go very well. After a night’s sleep, I wonder what you thought about it?”
After she’s answered, tell her: “It’s so important to me that I do exactly as you want if there’s an emergency. But, I’m also worried that I may harm you. What do you worry about?”
After each question, just accept her answers, whatever they may be. When you can, acknowledge her feelings (“I can see why this feels like planning your funeral. That must be really irritating.”) Perhaps some questions and acknowledgements will help create a more open dialogue. If you can better understand her worries and her fears, you can better understand how to best approach her.
Please keep us posted! You really are amazing. !!
When my Grandmother was diagnosed with Cancer I had the privilege of caring for her the last 5 weeks of her life.
Even though she knew she had a terminal illness she did not want any part of Hospice. To her it also meant the “death squad”.
Trying to talk to this very determined woman was difficult to say the least until I finally said
Yes, hospice helps people with the end of their life. They provide them with everything they need to be more comfortable so they can enjoy what time they have left.
It doesn’t mean giving up, staying home and dying. It means Hospice will come and help US care for you so if you want to go anyplace or do anything we can all get ready, go and enjoy ourselves.(my grandmother was a go-doer) They will bring the things to make your life easier and safer for you.
They come around your schedule so you won’t have to give up your quilt club. You don’t have to give up anything.
She had to think about that and eventually agreed that WE could use the help.
The will to live is so strong but death is inevitable for all of us. Sometimes you need to be matter of fact even if it hurts.
This is a great topic.
Although we didn’t have to deal with DNR issues (Ma was willing that she have a DNR order) I can see where you would have major concern for injury to your Grandmother. Food for thought.
You are doing a great job, caring, writing.
Thank you for sharing your life.
From one caregiver to another
HUGS
.-= Kathy´s last blog ..Driveway Devotional =-.
You are an excellent caregiver. Discussing hospice, palliative care and DNR is difficult. Denise made some great suggestions above for having another conversation. Do you have a local hospice home and has your grandmother been to see what it is like? If you do, when you feel the time is right, offer to go see it (if she is able). Some of my client’s were resistant to moving to hospice house but agreed to a visit (although reluctantly). After seeing the building and meeting the absolutely amazing staff, they had little reservation to go to hospice house when they and the team felt the time was right. We all have our idea as to what a hospice house is like and although some people still want to stay at home, others are glad they visited and know what to expect.
Thank you so much for all the wonderful comments!
Denise, I think you are right. I feel like I have approached the topic in a round-about way and perhaps need to be more direct with her. I came to her and reiterated that this was NOT like planning her funeral and that the nurses MEANT well, etc. I focused more on what the intentions were of the people involved and less on how she was feeling about what happened. I guess it’s because I knew that she was misinterpreting the situation. However, even if she was misunderstanding, she still feels the way she feels and I hope I didn’t invalidate her feelings. I’ll have to deal with this a little more openly and positively.
Thank you all so much! I will keep you posted!