Wish me luck folks

[Soror]

Thinking of you 🤗

We had a great experience with hospice within the VA for fil. Dh's cousin is a NP and really pushed for it earlier, as the other ladies have encouraged. 

[LifeLovePassion]

3 hours ago, Grace Hopper said:

IME this is information a SNF will ask for upon admittance - your choice of funeral homes to have on file. So while I hope you do get more time with your dad, it is wise to think on this. 
 

(( hugs ))

If the snf doesn't ask. (we didn't have arrangements made when mom entered AL), hospice will. 

[Hilltopmom]

Oh Dawn, I’m so sorry this is happening.

[Grace Hopper]

4 hours ago, mlktwins said:

Also, we were told if they went to the hospital for any reason, hospice ends.  It can be restarted when the are back in their facility.  We didn’t have this happen though.

 

I don’t this is a blanket statement - it all depends on decisions made at hospice intake. If one is taken to the hospital for something related to the terminal condition one has decided to discontinue treatment for, like cancer, or for a heart attack in someone with a terminal heart condition, that would go against the hospice agreement. 
 

However, if your patient has terminal heart failure or cancer (who may be on hospice services for a year!) and falls and breaks an arm, it would be cruel to leave that untreated, so a hospital visit for that would be fine. Again, it’s one of those details stipulated at intake. 
 

@mlktwinsif a patient is pretty much bedridden at time of admittance to hospice services, this is likely a moot issue. 

Edited July 13, 2022 by Grace Hopper

[Grace Hopper]

I was thinking about all the Medicare/Medicaid questions that come up, and it is sooo confusing. I literally had to go buy a copy of Medicare for Dummies (yes that’s an actual published book!) to start sorting things out at the beginning. I would encourage anyone thinking they may be involved in elder care, and anyone who’s crossed the line to 60yo, to become educated about the whole shebang. An honest, great-at-communicating insurance specialist is worth their weight in gold!

Sorry to hijack for a minute, Dawn. Thinking of you this morning. 

Edited July 13, 2022 by Grace Hopper

[TheReader]

Hugs and prayers continuing for you, Dawn; I'm so sorry he's going so far downhill, so quickly. 

[DawnM]

6 minutes ago, Grace Hopper said:

I was thinking about all the Medicare/Medicaid questions that come up, and it is sooo confusing. I literally had to go buy a copy of Medicare for Dummies (yes that’s an actual published book!) to start sorting things out at the beginning. I would encourage anyone thinking they may be involved in elder care, and anyone whose crossed the line to 60yo, to become educated about the whole shebang. An honest, great-at-communicating insurance specialist is worth their weight in gold!

Sorry to hijack for a minute, Dawn. Thinking of you this morning. 

Are you talking about being in a home that medicare would pay for?   My dad will be private pay and I am not anticipating him outliving his money at this point.   My parents were savers.   In some ways that is great and in other ways it makes me sick to pour this much into end of life care.......50 years of saving for a few years of care at the end of life.

[YaelAldrich]

Dawn, I join everyone here to say I'm so sorry that your father's condition is weakening. You are a terrific daughter to help him as helped others. I'm  praying for you. 

 

Edited July 13, 2022 by YaelAldrich

[Grace Hopper]

[eta @DawnMsorry I thought I quoted you]
 

Actually my statement was meant to be more general, looking back to the earlier posts about Part A, Part B, etc. Everyone, regardless of financial status, qualifies for MediCARE at age 65, and there are MULTIPLE plans to choose from when enrolling. Hospice service is covered by Medicare. 
 

MediCAID is something that will vary based on a person’s wealth. It seems clear that your father will not require Medicaid assistance (though a SNF *might* require a completed application as part of the admission paperwork).

All I meant to say is, this stuff is complicated, y’all (all y’all 😁not speaking specifically to Dawn), so you should study up on it. 
 

 

Edited July 13, 2022 by Grace Hopper

[Tiberia]

Dawn, I'm so sorry you're going through all this. I've gone through it with my FIL and then my own dad. It's heartbreaking and hard. You are doing a great job and you are a wonderful daughter. You will do your best as you navigate this, and it will be enough.

When the end came for FIL and for dad, I found the funeral homes to be extremely helpful. All you need to do is let the facility you dad is in know which funeral home you have chosen, and the funeral home will take care of transport and coordination with other funeral homes and with the cemetery. They are very good at what they do, so they will do a lot of the things you're concerned about. 

You are in my prayers. 

[DawnM]

He had the nurse call me yesterday.  He got on the phone and told me he was in a bad place and he needs the number and he gave the nurse the number (then he said my number to me!) and that it is all in the IRA and he needs the number and they will call me with the number.

He is so confused and upset and I hate all of this.

[Laura Corin]

27 minutes ago, DawnM said:

He had the nurse call me yesterday.  He got on the phone and told me he was in a bad place and he needs the number and he gave the nurse the number (then he said my number to me!) and that it is all in the IRA and he needs the number and they will call me with the number.

He is so confused and upset and I hate all of this.

I'm sorry. It's horrible. 

[dirty ethel rackham]

I'm sorry you are going through all this.  {{Dawn}}

[cintinative]

Praying for you.  Do you have good confidence in his care team? I'm trying to find some manna (mercy bread) in this for you.  

[Spryte]

I’m so sorry. It’s such a hard place to be, getting those calls.

 

[lmrich]

I  am so sorry Dawn and am lifting you in prayer and  sending you love and reminders to be gentle with yourself these  next few months❤️

[Katy]

Praying. I went through something similar with my dad. I remember praying he would either get better or die quickly because watching him like this was torture. 

[BusyMom5]

Hugs, I'm so sorry you have to go through this.  I would ask if there is another anti-anxiety medication they can give, or something to calm him down.  

[lauraw4321]

Definitely ask his nurse about a hospice overlay. And I’d ask about checking for a UTI. 

[DawnM]

1 hour ago, BusyMom5 said:

Hugs, I'm so sorry you have to go through this.  I would ask if there is another anti-anxiety medication they can give, or something to calm him down.  

I did just that before I popped on here!

He called me frantic and said, "Are you able to come and discharge me today?"

He couldn't hear my response so he handed the phone over to the nurse and I told her to tell him we were VISITING today but in no way was he coming home.

When I spoke to the charge nurse about his care this morning and asked for an anti-anxiety med, she said they had been talking about him in their meeting and wanted to stress to me that he is not able to go to assisted living, he needs full nursing care.   

I told her I fully agreed,.

They do have a semi-private room in their facility and will call me later to discuss just keeping him in their nursing home in the same building as rehab, but another wing.   That might be less confusing to him than moving him again.   

 

[DawnM]

44 minutes ago, lauraw4321 said:

Definitely ask his nurse about a hospice overlay. And I’d ask about checking for a UTI. 

Everyone says that.   He is tested often and has never had one.   This is full blown confusion/dementia.

[Scarlett]

1 minute ago, DawnM said:

I did just that before I popped on here!

He called me frantic and said, "Are you able to come and discharge me today?"

He couldn't hear my response so he handed the phone over to the nurse and I told her to tell him we were VISITING today but in no way was he coming home.

When I spoke to the charge nurse about his care this morning and asked for an anti-anxiety med, she said they had been talking about him in their meeting and wanted to stress to me that he is not able to go to assisted living, he needs full nursing care.   

I told her I fully agreed,.

They do have a semi-private room in their facility and will call me later to discuss just keeping him in their nursing home in the same building as rehab, but another wing.   That might be less confusing to him than moving him again.   

 

I agree the moving is very difficult.  My friend’s dad has dementia…he spent close to a month in the hospital while they looked for a nursing home bed.  Finally found one 1 1/2 hours away while they waited on one in their small town to open up.  He lasted one day before they claimed he was so violent they had to send him to the  hospital psych ward.  Family is upset staff did not give him time to adjust….and why can’t they sedate him while he calms down? 

Sounds like you have him in a good place Dawn. 

[Katy]

It sounds like he’s in a good place. 

[mominco]

(((hugs))) Dawn.

[prairiewindmomma]

Moves here resulted in an exacerbation of dementia and anxiety for about four weeks. Since he is unlikely to be able to remain in rehab, I would be considering what you could place in his new room that will help him orient that place as being home.....a favorite throw blanket, a framed picture, etc.  I wouldn't pick anything precious and irreplaceable....but I would look at providing visual clues so that as he settles in he has those anchors.

The labored breathing/not walking/disorientation phase can be quick....or it can be months to years on end. It's hard. I agree with the hospice overlay suggestion as well---not treating every infection or every illness can be a blessing. Hugs.

[DawnM]

Question.

He is now exclusively in diapers/depends.

The pants he has are just too much effort to get on and off.

Should I get sweat pants or some of those adaptive type pants?   I am looking at a few sites for those.

For those of you who have gone down this road or have worked in hospice/nursing homes, what do you recommend?

Thanks.

[stephanier.1765]

I don't have the answer on whether sweat pants are the correct ones to buy for him but, if they are, Walmart has men's sweat pants on clearance right now. I bought several for my father when he had Covid.

[Spryte]

FIL is in SNF and wears sweats. If you want to try adaptive pants of some sort, go for it, but the staff is used to sweats and they can handle it. That would be my choice.

If they are doing his laundry, make sure you mark his name in everything. Sharpie is fine, and later you can order printed tags.

Many hugs to you.

[LifeLovePassion]

We did elastic waist band jersey pants. 

[Harriet Vane]

1 hour ago, DawnM said:

Question.

He is now exclusively in diapers/depends.

The pants he has are just too much effort to get on and off.

Should I get sweat pants or some of those adaptive type pants?   I am looking at a few sites for those.

For those of you who have gone down this road or have worked in hospice/nursing homes, what do you recommend?

Thanks.

My father-in-law went over to wearing only pants with an elastic band. It was kind of a pain changing his Depends because the pants and shoes all had to come off, but we got used to it and did fine with it. Any sort of weird adaptive pants I think he would have rebelled against. Just my best guess. He needed to look "normal" every day--for dear fil that meant pants that looked kinda like khakis or navy twill with a Nebraska sweatshirt. Some days he insisted on dressing more nicely--we had long or short sleeved polos for those days.

[Katy]

Sweat pants. Adaptive pants are expensive and difficult and he’s unlikely to actually need them. 

[Ottakee]

Walmart has quite a few pull on styles and you could get more twill type ones, denim ones or sweatpants.  The laundry can be hard on them.  We used all 3 types with our older total care students and they were easy to work with.  If he is between sizes, go up to the bigger size to make them easier to get on and off, esp with a brief (what we call adult diapers)

[DawnM]

Thank you.   I had a 2 or 3 pack of lounge pants I gave him for Christmas in '21 and he has never opened them!

I think I will start with those.   They are solid color and IMO don't look like PJs, but they aren't the kind of pants dad even wears for PJs so they just sat there.

They are like these:

https://www.amazon.com/32-DEGREEES-Classic-Anti-Odor-Moisture/dp/B07HFGTBZ4/ref=sr_1_15?crid=CCVPTF5TFFVG&keywords=lounge+pants+men&qid=1657878532&sprefix=lounge+pants+men%2Caps%2C139&sr=8-15

Edited July 15, 2022 by DawnM

[DawnM]

I was so sad yesterday when I went in.   He wanted people to help him get to the toilet to go to the bathroom, but he is wheelchair and bed bound now and they make him go in his adult diapers.

They made him get back in the bed because he kept trying to stand up on his own and it wasn't working and my husband can't get him there by himself, he is literally just dead weight.

He was so upset and just doesn't understand why he can't come home.   He kept saying, "Mark is a big help!   Mark can come."

Mark is the caregiver we had, but Mark only comes 18 hours per week and even if we made it 40, then what?   

My dad understands some things still but not being able to come home is not one of them!

[Ottakee]

Does the home not have a toilet if program where they take him to the toilet with a 2 person assist?   Can he stand at all to pivot to a commode by the bed?

[Katy]

Legally their first obligation is going to be to keep him safe. If he keeps trying to get back up they’ll likely put an alarm on him so they’ll be notified immediately when he stands, and that often results in being moved closer to a nursing station too. 

This is because one of the most common reasons for stripping a nursing license is when a confused elderly person stands up then falls and breaks a hip. Hip breaks frequently result in rapid declines to deaths. 

Ideally there would be enough staff to help him stand and pivot to a portable commode, but that wasn’t always possible before the pandemic even in the best of places. In an age where McDonalds and Target and Goodwill are paying at least $15/hour and with minimal training a CNA who wants to be in the nursing field can work in a hospital it’s probably nearly impossible to keep ideal staffing ratios everywhere. 

[DawnM]

2 hours ago, Ottakee said:

Does the home not have a toilet if program where they take him to the toilet with a 2 person assist?   Can he stand at all to pivot to a commode by the bed?

This is rehab, so maybe that is why?   

He cannot stand at all without help right now.   He almost fell yesterday trying to stand from the bed to get to the wheelchair with help.   Then he blamed the nurse for her foot being in the way (it wasn't!)

[scholastica]

17 minutes ago, DawnM said:

This is rehab, so maybe that is why?   

He cannot stand at all without help right now.   He almost fell yesterday trying to stand from the bed to get to the wheelchair with help.   Then he blamed the nurse for her foot being in the way (it wasn't!)

In rehab, they should be working with him to achieve getting to the bathroom as one of his goals. If PT and OT don’t sign off, though, he’ll still be stuck in diapers in bed. Is he being compliant with PT and OT? In order to stay in rehab, he has to be compliant and progressing. Maybe you can emphasize that to him. “I know you want to do this Dad, just keep working on your exercises.”

[DawnM]

12 minutes ago, scholastica said:

In rehab, they should be working with him to achieve getting to the bathroom as one of his goals. If PT and OT don’t sign off, though, he’ll still be stuck in diapers in bed. Is he being compliant with PT and OT? In order to stay in rehab, he has to be compliant and progressing. Maybe you can emphasize that to him. “I know you want to do this Dad, just keep working on your exercises.”

He is doing what they are telling him but they say so far he is not progressing.   They are saying they will reassess him early next week and then make a determination about his ability to stay or not.

He is not being compliant with taking medication.   He refused melatonin and I am 100% positive if they give him an option about anxiety meds he will refuse.

 

[scholastica]

28 minutes ago, DawnM said:

He is doing what they are telling him but they say so far he is not progressing.   They are saying they will reassess him early next week and then make a determination about his ability to stay or not.

He is not being compliant with taking medication.   He refused melatonin and I am 100% positive if they give him an option about anxiety meds he will refuse.

 

I’m sorry you’re dealing with this. We went through similar with my parents. They ended up hospitalized and then in rehab at the same time. One of them was more compliant than the other and we lived under a cloud of “they can’t stay unless…” when we really needed them both to be there while we figured out where they would live after rehab. They absolutely could not go home again. Prayers for you as this is especially hard on only children. I at least had siblings to share the burden. It’s hard, hard, hard.

[Spryte]

Oh, I am so sorry. That adult diaper part is miserable. A lot of facilities are too short staffed to get to every room in time to help each patient to the bathroom (in rehab) and they put the briefs on them. It’s a terribly confusing and frustrating situation for the patients. 

Hopefully PT and and OT can help him get that ability back.

 

[Tree Frog]

Is it possible for Mark to help your Dad at the rehab facility? Having him there might make it a better transition and might help motivate dad. I have no experience with rehab, so if it's not feasible due to rehab rules, Mark's ability to get your dad safely on the commode, etc, please ignore.

[Grace Hopper]

12 minutes ago, Tree Frog said:

Is it possible for Mark to help your Dad at the rehab facility? Having him there might make it a better transition and might help motivate dad. I have no experience with rehab, so if it's not feasible due to rehab rules, Mark's ability to get your dad safely on the commode, etc, please ignore.

He would likely not be allowed to help with some things due to liability issues. But the companionship is a good idea. However, dad may implore Mark to take him home which is a challenge Mark would have to be prepared for. 

[DawnM]

I am not sure if Mark would go.   The facility has a lot of Covid right now and Mark is very afraid of Covid.

[TechWife]

3 hours ago, DawnM said:

He is doing what they are telling him but they say so far he is not progressing.   They are saying they will reassess him early next week and then make a determination about his ability to stay or not.

He is not being compliant with taking medication.   He refused melatonin and I am 100% positive if they give him an option about anxiety meds he will refuse.

 

Some ideas about meds:

When my dad, who had dementia, was briefly in rehab and was having a bad, anxious day & refusing meds, I asked the nurses very specifically to use an injectable anxiety med. They balked and said they would have to get the doctor’s permission and acted like they didn’t want to do it. For some reason a lot of nurses don’t want to call doctors when it is clear that something can’t wait and they need to do it. I looked straight at them and said “Then get it.” They had that permission within five minutes, gave him a shot and he settled enough to take other meds orally.

If he’s anxious about choking, even unconsciously, taking meds will add to anxiety & may lead to medication refusal. Another thing you can look into is whether or not some or all of his meds can be liquid. An amazing array of meds are available in that form for people who cannot swallow medication. It may be that he would be willing to drink his medicine rather than swallow a pill. The rehab may balk at the cost, but if you specifically ask, it’s something they have to check into. If they don’t do liquid meds much, they may just have not considered it yet. 

 

Edited July 15, 2022 by TechWife

[Katy]

1 hour ago, TechWife said:

Some ideas about meds:

When my dad, who had dementia, was briefly in rehab and was having a bad, anxious day & refusing meds, I asked the nurses very specifically to use an injectable anxiety med. They balked and said they would have to get the doctor’s permission and acted like they didn’t want to do it. For some reason a lot of nurses don’t want to call doctors when it is clear that something can’t wait and they need to do it. I looked straight at them and said “Then get it.” They had that permission within five minutes, gave him a shot and he settled enough to take other meds orally.

If he’s anxious about choking, even unconsciously, taking meds will add to anxiety & may lead to medication refusal. Another thing you can look into is whether or not some or all of his meds can be liquid. An amazing array of meds are available in that form for people who cannot swallow medication. It may be that he would be willing to drink his medicine rather than swallow a pill. The rehab may balk at the cost, but if you specifically ask, it’s something they have to check into. If they don’t do liquid meds much, they may just have not considered it yet. 

 

Yes, this. 

[DawnM]

1 hour ago, TechWife said:

Some ideas about meds:

When my dad, who had dementia, was briefly in rehab and was having a bad, anxious day & refusing meds, I asked the nurses very specifically to use an injectable anxiety med. They balked and said they would have to get the doctor’s permission and acted like they didn’t want to do it. For some reason a lot of nurses don’t want to call doctors when it is clear that something can’t wait and they need to do it. I looked straight at them and said “Then get it.” They had that permission within five minutes, gave him a shot and he settled enough to take other meds orally.

If he’s anxious about choking, even unconsciously, taking meds will add to anxiety & may lead to medication refusal. Another thing you can look into is whether or not some or all of his meds can be liquid. An amazing array of meds are available in that form for people who cannot swallow medication. It may be that he would be willing to drink his medicine rather than swallow a pill. The rehab may balk at the cost, but if you specifically ask, it’s something they have to check into. If they don’t do liquid meds much, they may just have not considered it yet. 

 

He is anxious about being left in a facility and never coming home.   The meds he won't take because he says he doesn't need them and argues about all of it.

[Katy]

I wonder what he would say if you asked him what he would say to a confused patient who refused to take his medication. And then try saying it to him. 

[Harriet Vane]

Dawn, this season is so intense! I'm so sorry. I am praying for you. Warm internet hugs also.

[Danae]

1 hour ago, DawnM said:

He is anxious about being left in a facility and never coming home.   The meds he won't take because he says he doesn't need them and argues about all of it.

I mean, he’s right.  You can’t reassure him that that’s not going to happen, because that’s exactly what’s going to happen.  You can quibble over “left” and reassure him that he’s not being dumped or abandoned, but he’s never coming home to his previous home.