Hi everyone, sorry it has taken me so long to get back here with an update. My initial post received many replies and had many asking for an update has been closed so I am writing an update finally here in a new post.
I am not sure if links are allowed but disincentive it's a link within the site, I am hoping it will be permitted, here is the link to my original post from 3 years ago: https://www.agingcare.com/questions/r/1419192/469664
At the time of my post m mother was in a rehab facility and I was concerned that I was not going to be able to provide the care my mom needed, and the facility was pressuring me to have her return home.
I received so many helpful replies here on the forum with great advice, encouragement, and reassurance which I so desperately needed. I think pretty much every single response agreed that my mother was beyond my capability and that she should remain in a facility that could properly care for her, and no one chastised me for this which was also so very helpful to me.
As much as I did fully appreciate and trust the advice I received here, I discovered that the facility my mom was at was at was literally the epicenter of Covid in Las Vegas and had highest rate of covid deaths than any other facility, or zip code in town. Not sure how many patients at the time or how full they were, but I’ve read they have 180 beds, and they had 30 patients die of covid. It’s not secret info so ill out the place if you would like to read about it, it is called The Heights of Summerlin. This facility is super plush, cushy, and luxurious, it looks like the place you’d want your loved one to be if you could choose. But once I found that out there was no way I could let her remain there. It was 2020 after all the global pandemic still fully peaking. And they were and are the single covid hotspot in this town. But she was only home for a while.
At home my mother had several home Healthcare providers, each visiting her once a week, a physical therapist, occupational therapist, as well as a visit from an actual RN. Not to mention the social workers that came to check on her periodically as well.
The OCT, PT and social workers were fine, but there wasn't much for them to do being that my mom was not even able to sit up anymore. The social worker investigated having me become a paid caregiver, but again, my mom made too much money for that. So again, I had to care for her, 24/7 with little help outside the 30-minute visits from home Healthcare providers once a week, and I could not be paid. So, I had to be on duty 24/7 without no leave and no pay. Pretty crazy, I guess I'll have to wait until I'm in a condition like my mom’s for my wellbeing to matter.
I don't want to come off as uncaring. I know I care for my mom, so I'm just being blunt about the situation.
Do you know (some of you here probably do) how hard it is for one person to move an immobile person who is like you in stature but double you in weight and clean them after bowl movements? By yourself? I mean we are talking completely immobile dead weight twice your own.
Changing her was physically exhausting and took me an hour to complete AT BEST.
Whilst also making sure her oxygen levels are good and that her oxygen is properly placed and let's not forget sanitary.
And making sure she was given all the various medications she was prescribed, all of which had their own specific requirements, doses, and times to be given.
And then there is mealtime. This was the best part of the day because mom was easy to cook and prepare meals for and always would tell me how good it was whatever I made her, which was nice. I treasure those happy moments with her so much. If only her physical needs weren't so heavy, I'd really love to be her caregiver, I think. She was past her mean and nasty phase of dementia, and now was calm, and seemed to be in deep thought most of the time, she wasn't very talkative anymore but when she was, she was.
past her really mean and nasty phase of dementia, and now was calm, and seemed to be in deep thought most of the time, she wasn't very talkative anymore but when she was she was generally sweet unless she was in pain, and even then she wasn't mean, but she would cry to me and let me know.
I could deal if it were just changing her and feeding hee. Granted I would rather not have to do the changing, but actually I prided myself for how I executed this task and I belive I did so in a manner that was healthier and more comfortable for her than a professional would, and I think the cost of supplies was about the same
In short, what I did was, instead of using aby the of disposable packacked wipe, I purchased large sacks of cut new plain white t shirt material and or sacks of white washcloths sold at places like home depot (provided they were SOFT some of the washcloths can be rough so you have to check them) intended as paint cloths, I would take about 3 cloths and wet them with just a hair above lukewarm water (above lukewarm because in the time thr clothes go from water to my moms skin they already cool to room temperature) and then I'd set aside about three for drying, I would use th warm wet clothes of course to removed the waste, and discard them along with the diaper, and proceed to dry her with the dry clothes abd also with the air, once fully dry I would then apply a skin protectant cream I selected because of its quality ingredients if necessary, place ew diaper on her and viola! (Of course I did this gloved and masked up, all of which also were discarded each change. She went from fearful crying and non compliant (as non compliant an immobile person can be) when using the caregiver provided suppies (wipes, creams etc.) to completely being relaxed without fear with my room temperature soft cloth approach. And as per the visiting nurse, who asked if she may check that part of my mother's body to make sure she looked well in that regard which I glady obliged for feedback from a medical professional, she appeared to be in excellent shape in that regard. The Nurses name was Dia, and let me tell you, she is doing God's work. She Is the one who helped me get mom placement into a qualified skilled nursing facility.
Which I'll have to cut to the chase now or I will exceed this forums generous character limit!
Nurse Dia could see the situation I was in, I didn't even have to unload on her, she saw that this wasn't a job for one unprofessional, unpaid person alone, and she asked me if I would agree to gave my mom placed into another rehab facility, where she knew was room for my mom to be admitted and from there I could consider long term care and placement for her.
So that is was I did, and my mom eventually was placed in an assisted living facility, it sure didn't look as cushy as the heights, it looked kinda like, IMHO not at all worth the money it was cost (outside of paying the staff that is, they seemed professional and qualified, the building and it's acoutrements looked to be of the lamest and cheapest variety but still not substandard. But a far cry from the comfortable counterparts she had in her own home which she earned and acquired during her lifetime of hard work ... but I digress again. Point is, my mom was being cared for by a while team of medical professionals, and I no longer was an actual slave. I love you mom but I was told by the social workers I had to be your 24/7 round the clock care giver (NO TIE OFF AT ALL) and do so without pay. Luckily I was also in charge of moms meals itook the liberty of making one for myself as well.
All was well with the world then and it remained so up until last week.
My mother, she is a trooper, with all of her comorbidities and with such a questionable quality of life has hung in there.
I mean, a bedridden amputee that's completely immobile, almost non verbal with severe and progressive dementia yet still able to swallow food and drink, I
don't think anyone myself included thought she would even be in care for very long to be honest.
But just last week, the assisted living facility called 911 to have my mom transported to the hospital. She had a low grade fever and was not eating.
I saw her n the emergency room she was sleeping but looked okay, all of her monitors appeared good. The nurse told me her fever had reduced , her breathing was on the shallow side so they had those oxygen tube things in her nose. They weren't sure the cause of her infection but They were going ahead with antibiotics for a potential / likely UTI. He says thy will be having her moved into a hospital room out of the er soon.
"Cool," I think. I'll go home and make a trip back to the hospital in a few hours.
Here is the heart breaking part. Next hing I know, just a few hours later. I get a call from the hospital, my moms condition rapidly declined, she was on a ventilator in the ICU.
It's a blur now but it was the day after that or the day after the day after, th doctor explains to me that mom gas an ESBL bacterial infection in her blood. Antiobotic resistant.
I am OK. But just even after all of my mom's health issues these past several years, it's unexpected. To go from typical uti , she'll be out of here in a jiffy to, she's on full vent support in just a matter of hours ... it was ... just a shock.
Now it's been a few days now. They have tried the past few days to get her off the vent or have her on lesser vent support but they have had to cease each attempt and sedate her and go back to full vent each time.
Me and her other loved ones are discussing what mom's wishes are or would be, what's best for her....
She is so young. Don't drink kids. My mom was born in 1953. She is quite young to be so sick.
She is still hanging in there though. I'm abut to go back to th Icu right now and stay the night with her.
Let's hope mom is not suffering and that she knows she is loved ❤️ 💔
Thank you all for your help.
I tried to give each comment on my original post a helpful or thumbs up, but I am sure I missed a few abd a few I inadvertently Un thumbed up because I apparently already had thumbed it up, and it wouldn't allow me to thumb it up again.
I'll try to have a quicker response time with future updates.
Take care everyone ❤️ thank you so much for all of your help and support
My apologies for many typos and errors in this I am legally blind and a little teary eyed as well as I type. Ty.
Hugs to you while you walk this road.
Thank you so much, that's is so very kind of you to say. Prayers and hugs to you as well. My apologies for replying to you like this, but I can't find a link to reply directly to your comment. I am not understanding how this forum works at present but I think I will get it eventually. ❤️
@everyone,
Apologies for my long-winded, disjointed and error-ridded update ! I mentioned in closing I am legally blind but I will work on correcting the many mistakes in my post, and I'll also try to make it easier to locate my update's two subsequent continuation posts.
Thank you for your patience and understanding. ❤️
Thank you for the update. So sorry about Mom but I am surevshe knows ur there.