My mom has pneumonia, she cannot eat or drink without aspirating and it has come to the point where medical care is of little use. She also suffers from heart failure and dementia. I have signed a DNR, and am now considering hospice and comfort measures only. I know that she has said in the past that she does not want to be hooked up to tubes and machines, but I still feel horrible about all this. How do I talk to her about this in a way that will get through the dementia? A gut wrenching conversation will be of little use if she does not remember it tomorrow. I am so torn right now. My siblings are keeping their distance and I have been given power of attorney to deal with her needs. Just feeling so helpless right now....
You aren't killing your mother, her body is failing because she has a terminal disease and any treatment now would probably buy only a few more weeks or months of misery. I'm sorry your family are in denial and hiding over this instead of giving you and your mother the support you need.
Don't be surprised once your Mom is on Hospice that she rallies, wants to sit up, be chatty, wants to try to eat [Dad tried but aspirated which was sad as he loved mash potatoes and gravy, and wanted so much to eat it all]. The coughing was exhausting him, and here he was 95 years old. Sadly the next day he passed.
The caregiver said that night my Dad was calling out to my late Mom who had passed in December... he was ready to see her. That was my saving grace from feeling so helpless. Dad got his wish to see Mom again.
As far as a conversation with her regarding these issues, I'd avoid as it will probably upset her for a short time. I know you want permission from her to let her be in peace. There's no talking through dementia though. Just be there for her and assure her that you love her. Once eating and drinking are gone she needs hospice/comfort care. Hold her hand, stroke her face and just be there for her. That is all you can do at this point. My sympathies to you as you are in a very hard place. I hope your siblings come around to acceptance of your mother's situation. They are missing out on a very important part of your mom's life. Bless you for being the one that is there for her. I'm certain she feels your presence and love.
You nailed it. I am seeking permission. I had not looked at it like that or was denying that is what I am doing. I do not feel any better, but it puts it into perspective for me. I know mom would want to go with some shred of dignity, and my brain is telling me that it is for the best, but my gut is being ripped apart in dealing with all this.
MikeinOregon-Sorry about what you're going through with your mom. It is very very tough.
A speech therapist (not sure why they are seeing my mother) stopped by the care center yesterday and had a doctor sign off on pureed food only for her. My mom hates pureed food and will NOT eat it. The head nurse at the care center figured something was off and called hospice, who managed to get the order reversed, but not before my mom missed two meals as a result. We took her some grapes and other favorites which she enjoyed very much. I am thankful hospice was able to take care of things quickly and let us know what was going on.
This is one thing I have encountered before and it frustrates me to no end. I give my contact information several times, and yet they still go on old information because no one bothers to update my mom's records or communicate between different agencies or even departments in the same building. Last year when my mom had heart trouble, it took 6 hours to get a hold of me because the upstairs office had old records while the downstairs office was up to date. They were trying to call a number for my sister that has not been connected for 5 years. I literally live 200 yards from the care center and they called our pastor who in turn drove 7 miles to tell us mom was in trouble. By that time the hospital, which had the outdated records, sent her to another hospital 150 miles away when her updated info said not to.
Has anyone else had to deal with this? This is the part that upsets me the most. Not knowing if her wishes will really be followed when something happens.
Most likely a doctor brought in a speech therapist to address aspirating. In your first post this was raised, and I assumed she had aspiration pneumonia. Even though she's in hospice, the speech therapist can help her eat with less choking and without frank aspiration.
The pureed foods aren't the only foods she can eat. If you can get in touch with the speech therapist, ask what level of dysphagia has been diagnosed. There are 4 levels. She might be able to eat selected solid foods, within limits.
I've had problems with the hospital we go to retaining incorrect information in my father's records. Even though I've provided corrected information, the erroneous information still remains. This time I called a follow-up coordinator and raised the issue, indicating that perhaps I needed to contact the hospital administrator so the order to correct the records came from the top.
I'll see the next time an emergency exists if someone finally got the information right. I never really have figured out why someone can't change the incorrect information.
You're not alone in being frustrated by this inefficiency, if not danger in keeping erroneous medical information in a file.
Maybe you can ask for a brief meeting with the highest level person available. That's scare the lower level people, if they think a complaint is looming. You could also ask if there's an ombudsperson or follow-up staffer at each of the organizations that can't seem to get the info corrected.
Happy thanksgiving
She had been feeling sick and was looking pale the day before, but she seemed to rebound later in the day and was happy and smiling at dinner.
The next morning she was happy and cheerful when she woke up, went down to eat breakfast and after she finished eating, she simply slumped over in her chair. The nurse took her back to her room while they called us. We were there in about 3 minutes, but she had already left us. I am thankful that she went quickly and peacefully.
Hope you can find peace and meaning; be comforted by good memories.
Look after yourself and give yourself time to adjust. You did a grand job for your mother, you know.
Hospice Whispers: Stories of Life and One Foot in Heaven. I think anyone dealing with a senior starting the end of life journey (no matter how long that may be) would benefit from reading these books and learning more about Hospice!