A few things…

mommyandme (m&m)

1.  Mom is officially being discharged from hospice and their services cease tomorrow at midnight.   Daunting… I’ve got to get some equipment in, bed, low air loss mattress etc…Got a virtual appointment with moms PCP tonight to see what we may be able to have covered by Medicare. So glad I didn’t leave that practice.  Her neurologist is also still onboard.   It’s just a little strange as two weeks ago a NP from hospice came for a visit, first one ever, and rustled up our calm setting.  She was sure we’d get her recertified… not… Getting a new mattress in was the NPs main change which I wouldn’t have done in hindsight. Getting mom up for the new mattress was like torture and I decided I’d never get her out of bed again.  Well, now I will have to.  I called the company that provides the equipment we have now but the cost to rent or buy from them is prohibitive. Although leaving mom in the current setup may be worth it so I don’t have to move her.  I’m trying to find said items as quickly and inexpensively as possible.  Hospice says she’s not terminal at this time. (yay?)   I get it.  They can’t do anything more for her than I  can.  “She could be in this same place for a year or more.”

2.  I was actually working on a respite vacation in the midst of all this.  Thought I’d be able to have hospice cover my leave at their facility.  Knowing that they could discharge her I was also training a new caregiver from Care.com to help.  The service we use hasn’t sent anyone that can do the diaper changes even with their price increase.   So I found a CNA that can. Thinking about all the logistics for moms care while gone has me frazzled, part service help,  part CNA.  My husband would also need to help cover nights. (I was going on this vacation alone to the beach.  No one else to worry about, well except for those left here, mom and the grandkids I watch) Husband would also need to take care of grandchildren.  Moms behaviors change daily as you all know.  How can I leave all the unknowns for whomever.  I was going to fly out this Saturday thru Wednesday. Three full days on the beach is all I wanted/needed.  I’m pretty sure I won’t be going , though I haven’t canceled my flight yet. 

3.  Mom has a new thing she does.  Her fidgeting while I’m sleeping has moved from the diaper tapes and material to inside the diaper making a mess with fecal matter.  Blech! I don’t know how to stop this.  She doesn’t undo the diaper, she just reaches in. Turning them backwards probably won’t help.  I make them pretty slack so they don’t bind on her skin.  Do I need to tighten them and turn them backwards?  Ugh 

Hope all your days today are peaceful enough. 

SusanB-dil

Oh, no!  m&m so sorry to hear this.

Uggghhh!!  Sure do understand behaviors that change daily. 

Maybe, hopefully, you'll still get to go.  Much needed!

((hugs))

May flowers

Oh, M&M, I am so sorry to hear your struggles. My heart just sank for you.

It makes zero sense to me that your mom was discharged. Did they see any decline during the time they were with her?

Would you consider another hospice agency? I think some may be better than others about this, and may be able to get her certified quickly so you don’t lose all the equipment.

I hope you can get a good caregiver. I have really been around and around with this, but I finally have an agency (locally owned) who has worked hard to find me competent caregivers. The best one I have has never been a paid caregiver, but took care of her parent with Alzheimer’s until the end. She is by far the most competent and trainable I’ve had yet. 

I am so sorry about your vacation, I’m hoping you will still be able to go. Are your kids able to help out at all?

As for the diaper, yes, we went through that. We ended up getting zip back onesies and they really have worked well. We used this source https://littlekeepersleeper.com/ and bought the largest child size. We had to get something snug, because otherwise my FIL would just pull his hands inside the onesie and still make a mess. It also has other benefits- if he pulls his covers off at night, it still keeps him warm, and it also keeps him from scratching his arms and legs (an anxiety/boredom thing we have dealt with for 3 years now)

I hope you can get all this sorted soon.

mommyandme (m&m)

Thanks!  

Yes they’ve seen much of her decline, from level 6b to 7e.  I guess the last level of 7f, when she quits smiling, could be awhile. They can’t medically do more for her at this time, she’s stable in other words, and I can do all the practical care she needs.  I’ve not wanted to use resources that could be better placed elsewhere, which I’ve felt all along, so I can live with it.  It does feel lonely to have these “friends” leave though, after 1.75 years. If she starts to sleep more, (she’s actually sleeping less), stops eating well, (she’s actually gained weight), or has falls, injuries, (she’s in bed 24/7) then I’ll give them a call back. I’m glad she’s smiling and still talking (more actually, complete word salad but love to hear her voice).  There is another hospice around but right now I’m not eager to go around this one’s findings.  I volunteered for them before Mom needed to be move close to me.  I guess I feel a loyalty? weird 

Her PCP will pick up meds hospice was prescribing and I’ll talk to the drs SW today about equipment and services (Home health?) Medicare may cover.  

My frame of mind has not changed, in that, I’m not inclined to call 911 in case of emergency, nothing heroic gonna go on here.  I wouldn’t want her going to the hospital at this point.  I worry about meds for her if she takes a sudden painful decline (morphine) etc… We have our last visit from the hospice nurse today so I’ll discuss it with her.  Also the CNA will come for the last time today to give her a good bed bath. (I have to study up on that.) When/if we need them back the same team would come.  That’s nice.  

Anyway, thanks for your thoughts and responses sincerely! 

​fesk

m&m, I am so sorry you're dealing with all this upheaval.

I think you should be able to keep the same bed your mother is in. The doctor should write the script for a hospital bed and then Medicare picks up the cost and the medical equipment place you have been dealing with all along should bill Medicare. I did this. 

My mom's doctor put the order in for the hospital bed to a different medical equipment place but they couldn't get the same bed. My mother was just starting to sleep though the night and I didn't want to disrupt that. I got the doctor's office to send the order to the medical equipment company that was providing the equipment through hospice. They took my mother's medicare info and billed them. They "rent" the bed to you for a certain amount of months (13 maybe?) and then you own the bed. Unless it's changed, Medicare will pick up the cost of the bed completely if it isn't fully electric. We had fully electric so I kept it. The monthly charge to us for that is tiny. I haven't seen any bills so my mother's supplemental insurance must be covering it. In any event, please check into this so you don't need to disrupt your mom. Oh, and hospice should not be leaving you high and dry. They should work with you and leave the equipment until you have replacements. I hope they are doing that.

mommyandme (m&m)

Thanks fesk, 

They didn’t leave us high and dry but I do feel a bit deserted but I’m just sensitive.  We ended up buying the equipment and I’ll submit some of it to the LTC “stay at home” benefit and will work on turning in the invoice for Medicare to help or the advantage plan or whatever. I too didn’t want the upheaval for mom, decided this was the win/win we need.  The medical equipment place worked very nicely with us. Just glad that decision is done. 

​fesk

I'm glad that piece of it is all worked out, m&m. I hope the rest of the transition goes smoothly for you.

Jo C.

What a disappointment for you; I am so sorry.  It is true; some Hospices are far more beneficent than others, but you have made a decision not to pursue a different Hospice.  You may feel differently in awhile, so just know that when one Hospice refuses a patient, there are others that may be more generous.  When a patient has dementia, the criteria for Hospice admission and retention for that specific diagnosis of "dementia" is dreadfully strict and in fact seems to be in great need to be updated by the feds. This is such a difficult set of criteria, that many Hospices will, in order to accommodate patients in need but who do not fit the Medicare criteria for the dementia diagnosis, will admit the patient with a different diagnosis that meets different criteria sets.  Often, it will be for a secondary diagnosis.  Skilled admitting and visiting RNs  are good at this.   For continuing to recertify for service at certain intervals, an MD or NP will make a visit and then make a decision.  That can be the problem point for continuation.  As mentioned, some Hospice entities are more beneficent than others.

As for the bed, if you have an Advantage Plan, most of those plans need to give approval prior to ordering a DME from a Medicare contracting/approved entity in order to cover the cost. Many people are unaware that they need to obtain ordered equipment through a Medicare approved provider.  Doctor's order needed of course, and I too ran into a problem getting a fully electric bed covered as again, Medicare has strict criteria. We got around this by stating that my LO needed to have the head of the bed moderately elevated to prevent shortness of breath difficulty when lying flat.  That was true and it covered nicely.

Also, getting garments that close down the back can be very helpful in the "blech" situation you mention. No need to buy a child's garment which often presents fit issues. The good quality adaptive clothing company, "Buck and Buck," has a good selection of female and male garments including daywear, nightwear and jumpsuits that close down the back.  The company is excellent in service and have a generous return policy. They will shorten a garment and even add name tapes at no additional charge.  https://www.buckandbuck.com/

As for your respite, once again, I am so sorry for all that is happening.  I hope that you will be able to find a way to make that happen.  I used to have the fantasy of just going to a hotel on the coast, (I am in California), for a few days and luxuriating in my quiet private room and on my private balcony overlooking a garden.  My fantasy had me staying at the Ritz that had such accommodations.. Just the quiet, the water and the green around me would have been so renewing. I never got to do that, but once in awhile, I would get to the ocean about 20 minutes away and just sit there listening to the waves, smelling the kelp and water; tasting salt on my lips with a nice breeze across my face while watching the gulls play on the air currents.  It was really renewing even if only for one or two hours.  If I had not had the ocean,  I would have driven to a nice park and just sat there feeling nature.  I was desperate for even a tidge of respite; it didn't take much.

So hope all works out well and comes together seamlessly.  Let us know how you are and how things are going, I will be thinking of you.

J.

mommyandme (m&m)

Thank you for your kind, supportive wisdom and information!  

When mom starts a transitional decline I’ll call the same hospice back.  They worked as hard as they could to keep her on, enough for about 20 mos of services and supplies.  I’m grateful for that.  

Thanks again!