Entering the 7th

toolbeltexpert

My dw is moving a little faster down the road lately. She is almost double incontinent. She's sleeping more and she has times when she is just humped over unable to move her legs or straighten up. She complains a lot about her back pain, has lost about 20 pounds in 2 months not wanting to eat. She HAD gained about 35 pounds but now it's going the other way. I changed her post to comfort care, I'll not make her go thru this any more than needs to be. Gonna ask for a hospice evaluation. She can still communicate some what. She's had multiple falls this year but only minor bruises. Guess I just needed to write it down!

I am sitting here at her side and she doesn't respond to anything I do to wake her. She does not take any meds that make her sleep. It's just progression I guess.

ghphotog

Toolbelt I'm sorry to hear about what's happening with your DW.

midge333

I am sorry to hear about the progression of your wife's dementia. It sounds like she is ready for hospice care. Good thoughts

toolbeltexpert

I asked about her being evaluated for hospice I was told they can't take another patient they are maxed out in the memory care. Now what? I am gonna ask if this is a waiting list for that? I never would have guessed this could happen. But I do understand the logistics of it. Not interested in moving her either.

M1

Stewart i would press for explanation on that, doesn't make sense to me. Who sets a limit on the number of patients who can be on hospice? Why? Is it a staffing issue? Is there an alternative agency? I don't think I would accept that at face value.

gampiano

Stewart, I agree with M1. I wouldn't accept that explanation.

Jeanne C.

Oh Stewart, I'm sorry. Sending warm thoughts.

Dio

TBE, so sorry to hear this update. As for hospice care, I have no experience but wonder if the facility allows hospice care from outside to come in without having to move your wife? Hoping for a smooth solution.

toolbeltexpert

It appears it's a logistics issue which could be staff related? I know right now they have ALOT of things going on I won't push this today but will be asking more tomorrow hopefully the crisis will be over.

Beachfan

I’m sorry to hear this, toolbelt, but I agree with M1. I thought Hospice services were in addition to the day to day care provided in a MCF. My only experience with Hospice involved agencies independent of the MCF staff; sometimes several different Hospice agencies provided care in the MCF. I would ask them to clarify the information they told you. If they have their own internal Hospice staff and they are maxxed out, is there not another agency that could be accessed? Good luck; it shouldn’t be this hard.

Vitruvius

TBE,

I agree it makes no sense. Hospice should not cause any addition staff burden, it should actually reduce it a bit. Hospice provides incontinence supplies so you or the MCF will no longer have to arrange for that.

Denise1847

I am so sorry about your wife's progression. I don't see why you couldn't call another hospice agency and have them come in. Tell the MC administrators that if they cannot provide the service for your wife, then you will have no choice but to contract with one. This is important for your DW's comfort. Where is the compassion?

toolbeltexpert

Well let me try to explain as I am not positive but it may be related to the number of people that they might have to evacuate in under 13 minutes. With only a certain amount of staff on say night shift they might not qualify.

There are special exceptions for people who are on hospice and the evacuate rule in 13 minutes.

They currently have 4 who are on hospice and they are outside hospice providers, it is not an internal hospice.

I might be wrong but I think this is the issue. I'll know more tomorrow.

I am wanting her pain to be better controlled. This maybe the issue with not sleeping and then just sleeping because she is wore out?

I have mentioned this and today the MD put her a steroid program for 11 days. I just picked it up but it doesn't start till morning. She is also on time release Tylenol and meloxicam.

ElCy

So sorry, prayers for you both…

Joydean

Steward, I’m so sorry your dw is progressing so much! Hopefully the hospice evaluation will happen and quickly. Prayers for you and your dw!

LJCHR

So sorry you are at this stage - we all will be there sooner than we want. Prayers that you get hospice worked out. It doesn’t sound right, I agree.

ImMaggieMae

I’m so sorry to hear about your dear wife’s progression. The hospice thing doesn’t sound right. Maybe it’s just that particular hospice? Are the other ones in the area that you could call? In an evacuation emergency, wouldn’t it be better to have additional people to help with the evacuation? I hope you can get this sorted with the MC and get your wife and yourself the help you need. Sending prayers.

Jgirl57

TBE, I am so sorry you hit a brick wall with hospice. This has been a long road for you and your DW and I wish there was an easy answer for you. Peace to you and your DW

Pat6177

Stewart, your wife is so lucky to have you taking care of her and managing her care. Every transition seems to bring with it new challenges. One foot in front of the other and you will sort it out. And don’t be surprised if you get hit with a new wave of grief. Hugs and prayers ((()))

ButterflyWings

(((TBE))) Sending prayers for comfort and support for you and your DW. If an outside hospice evaluates her and begins to handle the meds etc., it will make it better for you and her. No picking up the meds and waiting to get her relief. All is delivered to her and the MCF "should" benefit from the added support and care she will get, that their staff will not have to provide.

I wonder if it reduces their income when a PWD goes on hospice? Hoping that is not a factor in them discouraging you/her from getting hospice support. It has been so helpful for me and DH, though he is currently still at home. Or LOs deserve all the services we can get them. You are right to seek that evaluation and just find out what added support the hospice group can offer. Hoping it works out soon.

Joe C.

Stewart, I am sorry to hear of your wife decline. What you are describing about the 13 minute evacuation requirement sound like some corporate or state regulation, that why it does not make any sense. I hope you can get better results when you discuss with staff today. I’ll keep both of you in my prayers. Hang in there my friend.

M1

Whether or not she is on hospice has no impact on whether they can evacuate her safely, what, they think she can walk better because she's denied hospice? I would really, really question this, doesn't compute.

ThisLife

I'm so sorry to hear about your DW's decline and hurdle with hospice. Sending you the best of thoughts and prayers.

Quilting brings calm

It’s always a shock to me when a poster that feels like a friend posts an update like this. I think To myself ‘wow, already’? But then, my mom has been in the same stage for four years now.

TBE- I remember your posts back when when your wife was still at home, and then when you placed her. I’m sorry your wife is suffering like this, and that you are too.

harshedbuzz

@toolbeltexpert

I am sorry you and your DW are struggling with this latest situation.

I do hope they are able to have your DW evaluated for hospice quickly. It seems fishy AF that they're pushing back on your request.

HB

White Crane

I'm so your DW is at this point. Like others have said, it doesn't seem right that she can't be evaluated and put on hospice. Praying you can get her the help she needs. Sending hugs and prayers for both of you.

toolbeltexpert

Just an update. I talked with the charge nurse and discussed my main concern about my dw and pain management. She is very understanding and will take whatever steps I think are needed. I can ask for a referral for hospice without a doctor's order but it will take a doctor's order if hospice is recommended. That also will bring my dw level of care to the highest automatically which isn't a problem for me as I had always planned on that level.

For now I am gonna see how it goes as they are being proactive towards pain. I also asked if she knew of a hospice home that I could use if it was more than they could handle and I needed to go to hospice. She didn't know of one. She did tell me that in 18 yrs she only had 2 people leave to do hospice outside of the mcf. They have had as many as 6 at one time on hospice but said it was pretty hard.

My dw was back to her old self the last 2 days and she was eating a little and easy to dress ect. I usually do that every day. If she starts showing anymore signs of further progression soon I will do whatever I need to so she isn't suffering pain.

As far as what I had thought about the 13 minute being the reason I was incorrect. It is a staffing issue. It's a high level of care needed for hospice patients as you all well know.

I maybe overreacting to my dw's sudden episode's of not being able to move at all, it's happened several times in the last month or so where she was humped over unable to move, her incontinence coming on suddenly,her weight loss, her not wanting to eat very much along with her pain management is what has caused me to start thinking of palliative care sooner. Oh and in case your wondering we have done several uti cultures in the last 2 weeks.

Can't thank you all enough for your input and prayers. It's good to hear from each of you. And my prayers continue for each of us.

M1

I still don't know that that computes Stewart. It should not take a doctor's order to initiate hospice, and that should not be an impediment. But you are right that the most important thing is that she get the level of care that she needs.

toolbeltexpert

M1 I can start the referral but I read up on it and according to what I read it takes a md to sign off. Not sure I am putting it right.

I tried to put a screen shot of the alive hospice web site that explains the initial process. Maybe it will show up?

Screenshot_20231118-113353_Chrome.jpg

Vitruvius

My DW has reentered hospice a week ago. The sign off from an MD was by the hospice agency's MD. DW was assessed by an RN who then asked the MD for final approval.

I finally requested a reappraisal by a different agency after the first one "graduated" her after six months on hospice. The new agency said that based on her current state they do not foresee they would ever discharge her from their hospice.

mrahope

Just feeling so, so sorry for you with your DW's progression, and then to have obstacles to care thrown in your path seems "cruel and unusual" to me. If only there were a magic wand I could wave to make your burdens lighter. Prayers that something changes that allows relief for both of you.