Mum in denial about prognosis

[eccalouise]

Hello all,

My mum was diagnosed November 2023, so as a family we have been living with MND since then. She's had a few falls, but has denied using a wheelchair until very recently and only accepts minimal interaction with any doctors or specialists.

She is now at the stage where she is only on fluids, but it takes her about an hour to drink 250 ml and it needs to be spoon fed to her by my sister or me. She also chokes probably at least once a day now. She is so exhausted as well just recently, and in the past few weeks her speech has deteriorated.

She has refused a PEG but is losing weight because she just can't eat any more than she is. It is so so horrific to watch her suffering.

I respect her decision not to get a PEG but she still is holding out hope that she will somehow get better and I think is still in denial about the final outcome of this disease. I know she wants to stay alive for me and my sister, but by refusing the PEG she is shortening her life expectancy. I think she is so in denial that she doesn't want to acknowledge that. I'm afraid by the time she accepts the situation it will be too late for a PEG if she changes her mind.

Has anyone experienced something similar? I want to support her and not upset her, but I actually don't know if she is choosing this because she would prefer to go that way or if she just doesn't want to even think about it so is avoiding the thought altogether.

Any advice would be welcome.

 

[lgelb]

O xuamf etl jis vji teni raitvoup, katv et zua etlif ov jisi, xovj vji teni sevoupemi zua qsuwofif -- xjomi inqjetoboph vjisi ot pu haomv iovjis xez. Zua nohjv xepv vu jewi epuvjis genomz nincis us vjosf qesvz qsitipv vu sigmidv vji tisouatpitt ug vji raitvoup.

Tquup-giifoph moraoft ugvip mieft vu e muv ug eos op vji tvunedj tu gus vji moraof og puv emsiefz fuoph, zua nohjv vsz e qsuviop-sodj tnuuvjoi (dunqmivimz tnuuvj xovj e johj-tqiif cmipfis; quvipvoem ophsifoipvt opdmafi ihht, pav cavvist, qasiif niev, ivd.) cz tquup vjev tji dep txemmux nusi hsefaemmz cideati zua esi puv jewoph vu cemepdi vji moraof op vji tquup. Iwip pav us uev noml odi dsien, zuhasv, ivd. vjev nimvt et tji velit ov op us zua dep qsinimv e movvmi.

Og tji ot fivisnopif vu gusihu vji vaci, O xuamf jewi ep jupitv dupwistevoup ecuav ipf ug mogi xotjit epf jux ov upmz hivt jesfis gsun jisi. Vji csepdjit ug vji qevj tjuamf ci dmies.