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My mother has been doing so many peculiar things lately, most of which I understand. Not going into the medical issues, suffice it to say that she is in horrific pain that cannot be relieved. She is currently on 100 mc Fentanyl and 10 mg OxyContin every 6 hours and the pain is getting overwhelming. In the past month, Hospice has tried methadone with horrific results and then one dose of morphine with no change, so they did not continue.


Before the methadone, she was actually taking her OxyContin every four hours, so in reality, she is now taking less medication now than she did a month ago.


Now, she is sleeping more than she did before, to the tune of 21-22 hours a day. Her awake time is 15-30 minutes at a time. We have to wake her for her meds and also for her meals. The good thing is that she is still eating, but I am seeing a notable decrease in fluids. When she is awake and not eating, she will simply stare at the wall and then go to sleep. When I speak with her, she often cannot finish a thought, but when I ask her about her past, she can tell me with clarity what happened. One moment she cannot function cognitively, and the next she seems sharp.


Now, this week, she has begun to write on a notepad. While this may not seem strange to most, my mother has not voluntarily written anything more than a grocery list in years and has not picked up a pen since last March! Her eyesight and terrible arthritis prohibits it for the most part. When I saw her writing pad today and commented about it, she simply replied that she does not remember writing anything. Her writing was neater than I have seen in years! She was also writing thoughts like “No pity party!”, “I have had a good life” and “He loved me with all his heart and I loved him” about my deceased father. (She has woken up in the middle of the night two times this week looking for a pen.)


I guess my question is whether this is normal behavior for someone declining? Is this her way of finalizing things? Is this active dying? We have been on such an emotional roller coaster with her. I also don’t want my Good Brother or kids to be blindsided if she passes, but then again I don’t want to give a false alarm. Any thoughts?

Thank you for all of your insight. This emotional roller coaster is no fun at all! It is terrible watching her getting weaker each day and in such pain. She is working so hard to save face throughout it all. I have three brothers but only one Good Brother and he lives 8 hours away. He is visiting in three weeks. Normally, shoe would be planning for the visit, but it does not seem to register to her that he is coming. My sons absolutely adore their grandmother and one is bringing his new baby daughter to meet GG this weekend. Normally, she would be excited, but yesterday, she just seemed a little confused. I am sure as the day approaches she will get more excited if she is able. After all, she has been talking about this sweet baby since she was born a month ago!

Last week, I was telling her about a special trip my husband and I are planning in April. Normally, she would get excited for us and then the first question would be about our plans for her care. This time, she just looked at me and said nothing. If I ask what she is thinking, she will tell me that she doesn't know and waved me off.

As I write this and watch her in the camera, my heart sinks. I believe she knows the end is coming also.
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I'm sorry for you for having to face this. It's hard. Many of us have been where you and worrying. To me this is nearing her end. As Ahmijoy wrote, she does sound like she's giving you final thoughts. And staceyb had great perspective too.

Treasure what she's doing. I think you should let your siblings and children aware, not just so they're blindsided by her passing, but so they can be there with her when she's awake and to see her messages she's passing on to you all.

Even if this is a false alarm and your mother rebounds, they need to be aware to spend more time with her and make themselves more available not just to your mother but to you. You need support too.

{hug}
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Awe Georgia, I know personally how difficult this end of life journey can be, especially with your Mom. I think th at the fact that she is wanting to write down her final feelings is such a beautiful thing, good for her. It will be Lovely to be able to look back and share her final thoughts with family members and friends.

My family was Extremely Lucky, that our Mom wrote out a beautiful tribute to her life, with her memories from childhood, young adulthood, meeting our Dad and their Love Story and Sweet Courtship, immigrating from Wales, UK to Seattle on the Queen Mary cruise ship, getting Married, and having 6 kids and many Grandchildren. She thoroughly enjoyed her life, and we all have copies of this journal to refer back to from time to time, and enjoy her memories. It really does bring joy to my life to have this, In her own beautiful penmanship, and makes me feel close to her.

And now you have a hard copy of some of her final thoughts, perhaps you can get her at a lucid moment, and try to get her to share even more memories of her lifetime, even if you have to write them down yourself, or maybe record her if she can still speak at times.

Is she actively dying, perhaps she is close, asking her Hospice Care Nurse is your best bet there, as they know the signs to look for. Excessive sleeping and poor food and drink intake is part of the end phase, and in my mind, you shouldn't push it, just m ake her as comfortable as possible, as she is in so much pain, so I expect the end is near.

Just Love on her and make sure to tell her often, let her know that she needn't be afraid, and not to hang on, that you will be alright.

It sounds like you are doing an Amazing job of caring for her, and you should be Proud of yourself for that! It is So hard to let them go, but we must. Their poor old bodies are giving out, and this is all a part of our life's cycle. My Mom was also in intractable pain at the end, it's devastating to witness, and So unfair! There will be a sense of relief when she passes, and that is OK, as it isn't fair to wish them here longer, withering away in such pain.

I wish you well on this difficult journey, our Mom's are so hard to let go, but we must. You take care.
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I’m so sorry you’re having to go through this. It sounds like Mom is making her peace with this life and those she loves. Rather than worrying about when she will pass, take this time to spend as much time with her as you can. Talk to her. If she has moments when she’s awake and fairly aware, tell her how much you love her and what a great mom she is.

I don't think your brother or kids will be blindsided when she passes, unless up to now they have been completely unaware of her condition. If your brother lives close, you can invite him to visit Mom without calling a false alarm. Everyone involved with Mom knows she’s going to pass, but none of us knows when. I had an inkling something was up with my mom when they called in Hospice and when, the last 2 times I visited, three of us couldn’t wake her.

I am sending you many hugs and peaceful thoughts with tears for you in my eyes. Keep us updated, please. ❤️
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