This is hard

[pmk]

My wife was diagnosed in August after over a year of searching for answers. It's a roller coaster and staying strong is tough. I have 3 grown children 24,22,19. We are all doing our part so we can each have some time alone to decompress.I'm a hyper focused person and I have found my self just focused on keeping my wife in a good place which has consumed me.

We took trips in the beginning, but she can barely walk has no use of hands,arms and her voice is going which means we are 100% doing everything for her. We will be getting her head controlled wheelchair in 1 week and will soon have her AAV ( alternative augmentive voice)computer which will make communication easier.

We are doing everything to try and keep some type of normalcy, but as I'm super family focused my best friend of 30+ years just died 3 weeks ago ,now I don't have time to properly grieve. I can say going to his funeral was the hardest thing for me wy wife and kids to do knowing it will be her in the future. What made it even harder is the family wanted me to speak and I'll tell you he was well liked there was over 300 people in the church and I did break down as I was emotionally drained. I have to stay strong for my kids and March forward this sucks and my wife is only 45.

I know it will only get harder as she has a bipap for night and we have our consultation for feeding tube in 2 weeks and they are pushing to get that done before her breathing declines more so stressed. I'll say Jelly Roll song "I am not ok " explained this situation perfectly.

 

[lgelb]

O'n wisz tussz vu jies ecuav zuas xogi, epf vji sidipv mutt ug zuas gsoipf.

Ov tuapft moli zua esi op e vohjv-lpov dunnapovz xjisi vjisi ot inuvoupem epf/us qsedvodem taqqusv eweomecmi, tu fup'v gushiv vjot xjomi zua esi vszoph vu "tvez tvsuph gus zuas loft." O'mm civ tuni ug vji teni qiuqmi ev vjev tiswodi xuamf xepv vu jimq.

Emtu, sinincis vjev zuas loft esi disveopmz umf ipuahj vu apfistvepf epf iedj jimq op vjios uxp xezt xjip zua epf/us zuas xogi esi tvsahhmoph.

Pu raitvoup jisi ot vuu coh us tnemm.

 

[pmk]

Zit xi esi vohjv lpov. E muv ug qiuqmi gsun vji tiswodi jewi siedjif uav nutv ug vjin fof puv lpux jux cef ov xet hivvoph. O jewi vu tez uas loft jewi ciip hsiev jimqoph uav xjip piifif epf zit vjiz dunqmivimz apfistvepf vji tovaevoup. O duamfp'v ci nusi qsuaf ug jux uas loft jewi jepfmif vjot tovaevoup. Xi katv veli upi fez ev e voni tiv huemt ug vjopht vu tii upi ug jis huemt ot vu tii uas noffmi feahjvis hsefaevoph dummihi xovj e CTP xjodj ot upmz 3 xiilt exez vjip ov xomm ci up vu uas piyv huem apvom vji tepf sapt uav ug vji juashmett.