Mom’s been actively dying for over week now... how to comfort/awful to watch!

Mollimouse

Hi, 

i’m posting because I don’t know how to support my mom or ensure her last moments are joyous ones. She stopped verbal communication over a week ago. When she’s in extreme pain while she’s being bathed in bed she’ll say something but that’s about it. I’ve been by her bedside pretty much non-stop since mid-March (so in FL even though I live/work in Wash DC)  and I guess I don’t know how to cheer her up, distract her, or help her find peace at this point. But it is so devistating to see my mom just stare blankly into space with occasional grimaces and twitches from pain (but refuse to take pain medicine). I know she’s still fully with it despite not speaking and not eating or drinking for far too long now. Sometimes i’ll put on sitcoms or crime dramas since I know she loves those, play music, will talk about memories, or hold up the phone as her friends reminisce... but I don’t think she actually likes any of it and yesterday she swatted me away when I brought the phone near her so her sister could wish her happy birthday. I guess I never thought this active dying phase would go on for so long. I don’t want my mom to ever be gone, but it is so heartbreaking to see the shape she’s in and imagine what must be going through her mind. Like just waiting for death after an unexpected cancer diagnosis leas than three months ago?  That’s terrible! And I don’t know what to do to make it better or help her be at peace. Then on top of it I snapped earlier  today and said I‘d rather it all be over than for her to be in this stage. (I think a mix of compassion for her, selfish heartbreak on my part, and anxiety over how long I am taking off from work drove that outburst). 

 

if anyone has experienced a drawn-out active dying phase and has thoughts on coping, or has advice on how to help a non-communicative (and kinda uncooperativ) person find peace, i’d really appreciate it! I just feel bad I am around so much but unable to do anything. And maybe sitting silently by her side is actually making her even more resentful? I don’t know. 

 

Love to everyone out there trying to take care of their loved ones! 

m 

GingerMay

The senses

I am sorry for what you and your dear mother are going through.  I am a daughter whose mother is in the mid stages of a terminal disease, but it is going to be a slow and awful decline for her.  I know what's ahead and know also how you feel about wanting the end to come quickly just to stop the suffering.  Then comes the guilt for having those thoughts.  I think that's not uncommon.   

You ask about how to make it better or help her be more peaceful. When my mom is going through a tough patch, I use the sense of hearing and touch to ease her mind.  I've been told that hearing is the last thing to go.  Be careful what you say in front of her and keep her room peaceful perhaps with some of her favorite music playing softly and reduce stressful noises like sirens or yelling on the tv.  Lightly hold her and and pat it. Tell her she is a good mom, taught you a lot, and that she is loved by many (friends, relatives, neighbors, etc.) If she likes flowers, keep a fresh cut vase where she can see it. 

  

  

   

JerzyGrrl

Sorry to hear

Sorry to hear what your mom is going through, glad to hear you're there and wanting to help. It's tough. 

I've been sitting with a friend who's nearing the end of life. I've also been with others at the ends of their lives. There are guidelines and then you just get to pay attention, do your best to be perceptive, and wing it. 

I smiled about your mom swatting you away when you had the phone. At this point, there isn't too much she can control, but you and that "pesky" phone? Bingo! 

My friend had been connecting with hand holding, but the other day it apparently wasn't comfortable - any more? - at that time? Not sure, but I'll just have to be more sensitive. Also, a caregiver told me my friend's not communicative any more. Well, the caregiver adjusted the bed and my friend said "Whoa!" (You heard that? I asked; We both chuckled, oh, yeah).

The gift of presence is something you can give your mom. It's not a clingy, hovering presence. It's you being there with her, thinking kind loving thoughts. As long as her breathing isn't too wonky, you might match your breathing to hers for a bit now and then. If she isn't bothered by your talking, you might retell a fun or meaningful event or act - and after you're done,  thank her. 

All the best during this difficult time. Keep us posted. 

k2oly

hearing is the last to go, but another wonky hearing thing...

i've also been told that hearing is the last thing to go. i do hospice for a local cat rescue (essentially i adopt the "unadoptable") and have (sadly) worked a lot with a local in-home euthanasia dr. we do different things for the kitty who's dying, depending on what their favorite things are. but we *always* talk and sing to them, even after they stop breathing. the dr says he continues talking and singing to them as they drive away. so sweet and sad.

anyway... i also understand that some neurological changes might make listening a challenging and/or painful activity. the brain might scramble and re-arrange music and speech so it makes no sense and is confusing or distressing. even favorite music can be painful for some. it sounds like your mom might possibly be having this experience? if she seems irritated by her favorite music and tv shows and conversations, perhaps silence is what she prefers?

have you tried comforting scents, like fresh flowers, dried lavendar sachets, favorite perfumes, worn/unlaundered clothes that smell like her grandchildren or hubby, blankets that smell like her dogs or cats, coffee, hot cocoa, bubble bath, favorite scented candles, etc? you can even get as specific as, say, for example if she loved holidays maybe evergeen scented candles? if she loves hamburgers, how about the smell of burgers? (it probably goes with saying, but... if she's hungry but nauseus, that's a bad idea.) fortunately you sound VERY keyed into her reactions to sensory input, so if anything bothers her of course you can remove it immediately.

i wonder about comforting sights, too? flowers, plants, videos with sound turned down, large photos of loved ones? (poster-sized so she won't have to strain her eyes to see them? maybe even tacked to the ceiling if she's laying down?) if she had favorite vacation spots, maybe large photos from those places? if she liked birding, how about a nature video of birds?

is she sensitive to certain fabrics or temperatures? for example, if she likes cool, soft, silky fabrics maybe swing by a fabric store and find something that she'll enjoy feeling draped across her arms? if she was often feeling chilly, maybe a heating pad under her back or even on her arms?

Gildedrose

Some personal insights

I am so sorry you and your mother are having to go through this, but how fortunate she is to have you there with her.  It sounds so unexpected, too.

 

Everyone is different of course, but several years ago I hung close to death for 6 weeks and surprised everyone by surviving.  Here aresome insights from that time.

 

 I was very weak, talking was just too much effort, even though I was aware of what was going on around me most of the time.  It is true hearing is among last to go.  often it was too much effort to acknowledge people talking, etc. In any way.  Opening my eyes for more than a few seconds was also too much effort, again, i was aware of being talked to, and sometimes frustrated that because,y eyes were closed people thought i had dozed off.  I was just too weak to respond.  I hated food smells.  I was aware of all the movement around me, and preferred silence or soft instrumental music.

 

you seem to be very keyed in to her, which is great.  just being present and letting her know that is good.  Other people had great suggestions.  Key takeaway from my experience is that awareness, even withou response.

 

blessings to you.