Despite being a strapping 58 yr old man, with serious job and family responsibilities, I am an emotional wreck. Mum (she's a Brit) has been living with us for over 8 years, in declining health, but really healthy in comparison to others, her main problems being advance macula degeneration and memory loss. She is in day 3 of an energy surge (which has been great, we got to talk, and she is quite fine with dying if it isn't going to be painful). She has wondered for years why she is still here. So we got to talk about this today, currently she is sleeping like a baby, while I am fighting to keep my tears off my keyboard. She has had every stage other than the death rattle. The Friday before Christmas she was particularly confused and wound up vomiting all day. During the next two weeks her skin changed color, she could barely eat or drink, and slept most of the time, and the bowel movements went everywhere, and the smell wasn't human. Sunday last (Jan 6) it was like she was a year ago, she woke up pretty lucid (but still had no idea what year it was) and she ate a half sandwich. I took the opportunity to phone the UK as she was chatty Kathy all day long. Ditto yesterday and today.
Question #1 - Mum never smoked, her breathing is clear and regular. Is there any chance she could miss the death rattle stage? She panics when she can't breathe properly, and I don't want her to suffer.
Question #2 - Is there any chance that she could have actually dodged the bullet this time, that somehow she really has come to?
Question #3 - Assuming the answer to #2 is No, how long could this surge of energy and awareness last? The best I read on the web was "a few days" but most likely 24-48 hrs, which she is well past as I type.
Question #4 - I don't know what else to say to her about passing, I think we had closure on everything months ago (she was sure she was dying then and we already had her affairs in order). Is there anything I should be saying or emphasizing? I didn't want to say too much about the dying process, just focusing on that she was okay, we all loved her. Part of me wants to talk about my Dad who passed over 40 years ago, but I haven't as that's my agenda not hers. Any thoughts on this?
Thank you very much for your care of others by having a forum such as this, it truly helps a lot.
BTW, over the past three months (about the time the incontinence started) we were blessed with the help of a relative who lives close by in Portland OR, she is wonderful with her, without her help my wife and I could not have made it through.
Well, it's Day 4, she's very frail, but aware. I had to go to work today, tho' still an emotional wreck. My daughter got to see her yesterday, my son visits today. Part of me feels like she'll pull through for a few more days, though the other part of me wonders how. Assuming her new found awareness (somewhat as it was 18 months ago) is the result of the final release of serontonin and endorphins I can only assume she will start losing her breath sometime. Although she has to rest on trips to the bathroom, she is breathing normally. Glen
I am sorry for your distress. I don't know that I can answer all of your questions specifically but I would just let her direct the conversations. If she is particularly lucid at some point, you could mention your father in some way..maybe remember when Daddy blsh, blah, blah and see what you get back. Sorry that's all I have to offer.
Do you have any type of Hospice care? If not might be a good idea as they will make sure she is pain free. Sometimes they need to hear from there loved ones that its ok for them to go that as much as you want them to stay . That you will be ok ....Prayers for you.. Its hard
It sounds like she also has dementia (memory loss). Dementia doesn't mean it is only memory loss. It includes cognition problem and behavior issues. She is confused. My late FIL who had severe Alzheimer's had the similar issue with dying. But he started with thinking the hospital wanted to kill him and ended up with thinking he needed to die having nothing to do. Later, the doctor gave him anti-depressant and anti-psychotic drugs. He moved to a memory unit and enjoyed the staff and forgot about it.
It is possible that your Mom is confused about the timing and everything so she is confused about her death too. Hospice is a good idea. It will ensure that she live comfortably but she will not go for aggressive treatments. Also distraction is a good
strategy. Don't argue with her but validate her thoughts. Comfort her with simple answers. Don't explain logic to her. She is in her own reality, not yours.
Also, for a demented person, she may have aspirational pneumonia or swallowing issue because she may have trouble eating. Usually at the end stage of dementia, eating is an issue. Incontinence is part of it too. Please consider hospice.
Macular degeneration isnt necessarily fatal- and memory loss, is it truly dementia, or is it random memory loss? The two are very different. Has she been diagnosed with dementia?
Patients really do rally- meaning they get their "second wind" and "come back to us" for short periods of time...however, it doesnt necesarily mean they are dying. Youre asking about the death rattle, that only happens when a patient is actively dying and only in the last few hours....she hasnt "skipped" that stage, but probably isnt as close to it as you imagine.
Whats the story on her medical care? Is she seeing a doctor? Is anyone working with you on this? Hospice, is for terminally ill persons, who have been certified to only be able to live 6 months or less. If you are concerned this is the case, you have to have a physician write a hospice order for an evaluation before you can get hospice...and the only way to get that order is to take Mum to a doctor who is hospice friendly. Not all of them are. Without the order, in this country, a hospice agency cannot evaluate her appropriateness for hospice.
Its really great that you and your mum have talked about the things that are important...many families never get that chance. If you wish to bring up your father, you can- but like you said, thats YOUR agenda and she may not wish to discuss it with you; however she might.....you can ask.....but be prepared for her to react negatively to the subject. She also MIGHT react positively to it. You wont know unless you ask her. As far as your emotional state, I feel for you. Ive gone through this...its alot easier if you have a doctor on board who can help direct you, give you timeframes, and tell you what the prognosis is....but if you dont have that, youre totally at the mercy of your own guess. Thats not really fair, since I assume you arent a medical person.
Try getting her in to see a geriontologist (senior persons specialist) or at the very least, a Neurologist, (dementia and memory loss specialist) to see if they can evaluate her...its quite possible that your mum has years of living like this ahead of her, and she had developed some sort of bug, or infection, which caused all the symptoms of late.
Again, my heart goes out to you...please keep us posted.