I feel like I have ordered my mother's death.

What is it you feel you need to discuss with her? She has already told you her wishes and you are honouring them, I don't see any need to rehash it. Tell her you are bringing in extra caregivers to help look after her while she is ill, which is nothing but the truth.
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.

Mike, I just went through that in September with my Dad. He also had aspiration pneumonia. I kept wondering if I was doing the right thing. I kept thinking something could be done to help him. I just wasn't ready for this. This was too quick. I figured pneumonia was pneumonia and that is treatable, but it was the aspiration that made it so very complicated.

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.

mike, The logical part of you recognizes that your mom is dying.The emotional part of you is understandably very distressed. It's so very hard to lose a loved one. I just want to reassure you that none of this is your fault. You didn't cause her to have pneumonia or heart failure or dementia. And you won't be the cause of her dying. It's your name on the document, sure, but it does not mean you will be causing her death. It's the nature of life. It sounds like she knows that considering her past statements regarding tubes and machines.

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.

Thank you for your kind words.

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.

((((((mike))))) what you have ordered is the care your mother needs as she goes through the dying process. She will die with or without what you have ordered. With a DNR, hospice and comfort care measures she will die with as much ease as modern medicine can manage. Without these, there is a chance that she will be in distress as she dies. I am sorry that your sibs are not joining you in caring for your mum at this stage of her life. Your mum has already given you permission to do what you are doing. I agree with others that there is no point in trying to discuss it with her at this time. She trusts you with this big responsibility and you are carrying it out with love. It is all you can do. She may well have a sense that she is passing. Just be there for her. I have POA and my mother is on comfort care too and she has said in the past that she does not want any extraordinary measures taken to prolong her life. I will see that she has as much comfort as possible when the time comes. No one said it would be easy and it isn't, but you are doing it well. more (((((((hugs)))))))

Mike, I just kept telling my mother that everything was going to be all right. Hold her hand and be strong for her. May she never be afraid, and may she have no pain.

I think we all feel that way when our loved one is dying and can no longer communicate, at least like they would when they were well. My father died of brain cancer and it was so painful watching him lose his ability to talk. There was so much I wanted to talk with him about. Luckily we had a super close relationship throughout our lives together. I still talked 'with' him recounting past good times and things we shared. You may already know this, but hearing is one of the last senses to go, so warn your absent siblings to avoid any upsetting talk if they decide to show up. You are doing a great service for your father. May God bless the both of you.

I'm sorry. I meant your mother. Got a little caught up in posting about my feelings surrounding my dad. When it comes to parents, it's never easy.

Windytown--I'm sorry about the death of your father

MikeinOregon-Sorry about what you're going through with your mom. It is very very tough.

Hold her hand and tell her about events from her childhood, if you know any, and events from your childhood. Remind her that she had a good life, had a lot of fun, did right by her children, and did good in the world. Fib and tell half-truths as necessary. That, plus letting her escape from her broken body, is about all you can do for her now. Keep her in your heart as a healthier woman who DID have a good life. The good memories will slowly dilute the grief you feel. God bless you both.

Mom left the hospital last Monday and is back at the care center under hospice. Her outlook has improved being back in familiar surroundings and she seems to be more at peace with all this than any of us. I am still in inner turmoil, but I figure that will go away over time.

Mike, thanks SO much for the update! I'm glad she is past the crisis and that her state of mind is good. Take care of yourself.

Argh!

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.

Mike, I haven't had a chance to catch up and read all the posts other than just skimming them, so I apologize if someone has already addressed this issue.

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.

You're a caring son, Mike

Happy thanksgiving

Mom passed away yesterday morning.

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.

Mike, I'm so sorry for your loss, but so glad that mom is at peace.

Hope you can find peace and meaning; be comforted by good memories.

Mike, I'm so sorry for your loss, I do understand how hard it can be, especially when you think they might be rebounding and then it happens. It was like that with both of my folks too. We have to find comfort in the fact that they gave us one last push, in a way to bring us a smile and then peace, that they are now in a better place. God bless you and your family!

Mike (((((hugs)))) my deepest sympathies on the loss of your mother. I am so glad she went peacefully. That is a comfort. Your days will be so different now, and after the business of the arrangements you have to make. Be sure to look after you. You have done a great job caring for your mum. I know she appreciated you.

I'm so sorry for your loss. It must be hard not to feel cheated that she slipped away so fast, almost while your back was turned; but from her point of view could she have organised an easier or more natural passing?

Look after yourself and give yourself time to adjust. You did a grand job for your mother, you know.

Mike I have only just found your posts so was not able to comment before. Your mother had a wonderful son who honored her last wishes. May loved ones wish to die when there are no relatives around and spare them the pain of seeing them pass. On some level she probably knew you did not want her to pass. No one can know if she knew when she was about to pass but it was a very peaceful way to go. As you move on through these difficult days remember you followed her wishes and she was comfortable and feeling well. Be at peace.

My condolences to you Mike. I send prayers for your comfort in the days ahead. You are a kind and thoughtful son that did his best for his mother.

I'm so sorry for your loss, Mike.

Be at peace, Mike - no doubts and no regrets about the care you gave your beloved mom - you loved her and she knew it

Dear Mike, My deepest sympathies and condolences on the passing of your beloved mom. I am so sorry for your loss.

Hospice will answer all your questions. Before Hospice I didn't understand. We just went through 6 weekjs with dad and Hospice and they totally took control and helped to make it a good 6 weeks for dad, and all of us with their patience and advice and kindness. I bought two audio books from audio.com about Hospice and they helped to give me peace and a deep understanding into the process of dying. I totally recommend reading (or listening) to these 2 books -
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!

My heart goes out to you Mike. I was frustrated until I read your post from Nov 11th because 'I'm the one' caring for my elderly mom having to watch her decline in health. I've been so stern with her thinking that she is rebelling when, after reading so many other's posts, and finally yours, I cried realizing my emotions are getting in the way. My mother needs me! No matter which choices they make in their final years, months, days or hours of their lives, we should help them keep their dignity instead of being (like I was) either a drill sargeant or feeling pity for myself.