u/Honest-Designer9880

Im CG for husband with parkonsons and COPD. We have Home Health for PT. Loved them. They sent out an RN as well. The day she was here, my husband wasnt doing well, his pulse ox was low.

Condensed version, she insisted adamently that he had to go to ER. He refused. She was rude, agressively insisting to him that if he didnt go he would have a heart attack and die overnight. She refused to leave. Claimrd she would lose her licrnse. Adamently insisted he either go to ER or accept hospice.

We finally called EMTs who immediately gave him back to back nebulizers, took him to ER, where the ER dr said he didnt need to be there go home!

So now, we have an unnecessary ER and ambulance trip, the Home health agency who had the best PT in years has discharged him as too high risk.

Do they get paidxmore if hes on hospice? He doesnt want it and Im tired of feeling like Im dealing with a commissioned used car salesman!

One of my kids asked what I aanted for mothers day. Pretty sure she was expecting a trip to nursery for flowers.

Yeah, no.

1. Weekly respite break

2. Someone to figure out wheelchair transport to appts that is not curb to curb

3. Someone to fight with neuro and respiratory offices to get appts

4. Someone to find a new pcp office with real drs who dont push hospice like tgeyre getting a damn commision

5. Someone to figure out oxygen. Apparently if you are using 7 lit you cant fill tanks from same machine. You gotta have TWO, which my electric wont support

6. Someone to deal with changing banks without missing any of 23 auto pays or having anything bounce.

7. Home health dumped him claimimg too risky to treat with his instable 02. (I think it was due to ny complaint about their nurse)Now i need to find out how/who/where to follow thru on the custom wheelchair they ordered, and the hospital bed.

8. How to get medicaid to pay for bed pads, etc. Everyone plays "someone elses job"

To be continued

So...What do you ask for for mothers or fathers day?

In many mid western states, we are experiencing severe drought, which, when combined with signifigant winds, is leading to massive wildfires. To help prevent fires and avoid blame, power companies are planning blackouts, shutting off entire beighborhoods by grid, to prevent wind damage to powerlines, and sparks. They say it will be off up to 36 hours.

This is good, right?.

In January, I received an email from Xcel telling me my grid area was likely to be shut off due to wind forcast and it was possible to benoff for up to 36 hours.

Everyone gets upset over these.  Its inconvenient to everyone, but it is potentially deadly for my husband, and there has been little to no well thought out planning from anywhere and no publicity telling what to do. 

Unfortunately, Im not exagerating when I say deadly. My husband is one of thousands of people in the metro who survive due to supplimental oxygen.  From babies to handicapped to elderly, shutting off power can easily become tragedy.  

Case in point:  my husband has COPD and Parkinsons. Hes bedridden.  He uses oxygen 24/7, 7 liters per minute.  This is high use but not uncommon. We use an electric  concentrator.  We have a battery backup and 10 "E" tanks.  Optomistically that will last less than 24 hours, a long way from the 36 hours xcel says power can be off.  

I spoke to xcel.  They said talk to our oxygen supplier..

I spoke to our Oxygen supplier, Aerocare. I asked for the large "M" tanks that can last much longer.  They dont provide anything but small portable "E " tanks, some of which can be recharged with equipment I have in my home.    FYI, an E tank at 2.5 Liters lasts 4 hours.  You can do the math.

Aerocare said in an outage we will deliver more tanks. Really? To how many thousands of people?  Their suggestion was go to the ER.  Im not sure how many people needing ovygen support any one hospital can support but this brings mental images of vulnerable patients lying in hallways, exposed to heaven knows what germs, needing resources even as basic as water and food or bathroom facilities.  

Multiply this scenario to onclude people on home dialysis, or other medical equipment? If I were a hospital administrator I would be a bit upset.

I started looking for options.  Obviously, a generator came to mind.   But what about people who live in apartments? Another mental image of an 80 year old man, with a generator on his balcony, carrying 5 gallon cans of deisel fuel to the 4th floor?  That oughta give management ulcers.

Shouldnt someone more important than me be concerned about this? 

How many of you have a backup plan?

Minor tip, but Huge for me. Husband is bedridden with parkinsons. His grip has deteriorated.

He only drinks soda. Yes yes, i know, but with 7 to 9 months prognosis, IMO, he can eat, drink, any damn thing he wants!

The issue has been, drink container. He used to use large 32 oz glasses. Then I switched him to a mug with lid. Dropseys is huge. Daily mess from 3 or 4 12oz cans of soda is.....Im sure you can imagine. Under nightstand, splashed on everything, including bedding, under bed...

I went to Amazon. Bought a large Stanley mug. Holds 2 cans, insulated. Then a mug holder. Its metal, can be mounted wuth screws to nightstand. Rhen a 'giraffe straw". Like they use for bikers? 36". The mug sits securely in the mounted holder, he can grab straw and drink as much as he wants without worrying about dropping the mug.

Why the HELL is rhis not a thing in a hospital???

Stanley mug was $40. Holder and straw totalled less than $20. (We wont discuss the broken drill bit for installation.)

Its one less irritation, 4 less messes to clean, and hes actually drinking more liquid because hes no longer worried about dropping the cup and creating more work for me.