Dad Update (new update in first post on 12/13) (and 12/30)

[Annie G]

31 minutes ago, DawnM said:

 

Although I will say, after thinking about things more tonight.....I am not sure he can even try to stand up at this point, so it is entirely possible he would be ok, but the dementia worries me in the situation as well.

Has he tried to get up while he’s been in the hospital?  Sometimes with dementia they cannot stand up, but they forget that and try anyway, and end up just kind of falling out of bed onto the floor. 
Our experience with dementia and cancer pain is that the patient doesn’t necessarily recognize the pain as pain. Sometimes it manifests as anxiety or a grumpy mood, or increased altered state.  
I feel so bad for him, and of course you, too. Hugs.  

[sassenach]

2 hours ago, lauraw4321 said:

Ah. Skilled nursing facility with hospice overlay. That’s what he needs. 

That’s what we’re doing with FIL now. But they still can’t watch him 24/7. I think you‘ll only get 1:1 care if you hire privately. 

[Grace Hopper]

3 hours ago, TechWife said:

Here is the applicable law. if the only reason is to prevent him from getting out of bed, then they are restraints. They can, however, use a bed alarm so that they are aware when he does get up. The response time on that will probably depend entirely on staffing, TBH. 

http://reports.oah.state.nc.us/ncac/title 10a - health and human services/chapter 13 - nc medical care commission/subchapter f/10a ncac 13f .1501.pdf

https://www.congress.gov/bill/105th-congress/house-bill/3605
 

This is the federal law that applies. It’s a huge fine on the facility, should there be any complaints. Sad that liability risk interferes at times supercedes patient needs, but there it is. 

[DawnM]

14 hours ago, Annie G said:

Has he tried to get up while he’s been in the hospital?  Sometimes with dementia they cannot stand up, but they forget that and try anyway, and end up just kind of falling out of bed onto the floor. 
Our experience with dementia and cancer pain is that the patient doesn’t necessarily recognize the pain as pain. Sometimes it manifests as anxiety or a grumpy mood, or increased altered state.  
I feel so bad for him, and of course you, too. Hugs.  

No, he has not.   They DO have rails up on the bed.

Thank you.

[DawnM]

They have contacted a hospice facility that is looking into taking him.  I got a call today, so we will see.

Of course, the social worker working on this gets off today at 2pm and won't be back until after Christmas......gah!

Edited December 16, 2022 by DawnM

[kbutton]

The bed rail thing is infuriating when the very same facilities will often not put salt shakers on the dining room table because it might mean people salt their food too heavily. Talk about losing the plot, sigh.

There are also nitpicking rules regarding wheelchairs at a table—locking wheels for safety can be a restraint as well.

I have a friend who works in a nursing home, and it’s eye-opening. DH did 20+ years ago also. I am not convinced that all of the new rules have improved care across the board. 

[Katy]

If they give him enough medication to control his pain, he might qualify. He enough meditation may also shorten his life. ETA: they may be prompting you to increase his pain control. 

Edited December 16, 2022 by Katy

[DawnM]

Hospice is meeting with us on Monday and they will take him but apparently the law states that they can only take him for 30 days (even with private pay) unless he declines significantly.   

Honestly, I think it is worth trying at this point.   He will be safe for at least 30 days and hopefully longer, and I don't think he will make it past 8 more weeks, but of course we don't know for sure.

 

[Grace Hopper]

3 minutes ago, DawnM said:

Hospice is meeting with us on Monday and they will take him but apparently the law states that they can only take him for 30 days (even with private pay) unless he declines significantly.   

Honestly, I think it is worth trying at this point.   He will be safe for at least 30 days and hopefully longer, and I don't think he will make it past 8 more weeks, but of course we don't know for sure.

 

I think that’s a good plan, Dawn. It gives the situation a bit of time to plane out. 

[DawnM]

He has qualified for hospice at the facility.    They will be moving him there tomorrow.

He was eating at 50% when he arrived but is now at 25% according to the hospital staff/chart.

He is arguing that he has NO heart problems.....even now......ugh.

[freesia]

(((Hugs))) I’m glad he’ll be taken care of, but I know this is so hard for you. 

[Halftime Hope]

15 minutes ago, DawnM said:

He has qualified for hospice at the facility.    They will be moving him there tomorrow.

He was eating at 50% when he arrived but is now at 25% according to the hospital staff/chart.

He is arguing that he has NO heart problems.....even now......ugh.

{{{Dawn}}}  Elder care can be excruciating.

[Scarlett]

That is great news Dawn. 

[sassenach]

2 hours ago, DawnM said:

He has qualified for hospice at the facility.    They will be moving him there tomorrow.

He was eating at 50% when he arrived but is now at 25% according to the hospital staff/chart.

He is arguing that he has NO heart problems.....even now......ugh.

I’m really glad hospice is working out. 
 

FIL told me that the hospital misdiagnosed him with a stroke because his speech and movement weren’t effected. He told me this with slurred speech, from his rehab bed that he couldn’t get himself out of. The human capacity for denial is unrivaled. 

Edited December 20, 2022 by sassenach

[DawnM]

3 minutes ago, sassenach said:

I’m really glad hospice is working out. 
 

FIL told me that the hospital misdiagnosed him with a stroke because his speech and movement weren’t effected. He told me this with slurred speech, from his rehab bed that he couldn’t get himself out of. The human capacity for denial is unrivaled. 

I was kind of worried my dad has had a stroke.   His left eye is completely droopy, but he can move the left side of his body.   Not sure what is going on.

[Harriet Vane]

2 minutes ago, DawnM said:

I was kind of worried my dad has had a stroke.   His left eye is completely droopy, but he can move the left side of his body.   Not sure what is going on.

It’s worth asking that they evaluate for stroke.

[Catwoman]

I'm glad he qualified, Dawn, but I'm so sorry it has come to this. 😞 

Praying for your dad and your whole family. This is so hard, and I know how hard you have been working to make your dad's life the best it could be.

[Ottakee]

1 minute ago, Catwoman said:

I'm glad he qualified, Dawn, but I'm so sorry it has come to this. 😞 

Praying for your dad and your whole family. This is so hard, and I know how hard you have been working to make your dad's life the best it could be.

This exactly.  End of life stuff is so hard but you have done so much to make it the best it can be for him.

[DawnM]

2 minutes ago, Catwoman said:

I'm glad he qualified, Dawn, but I'm so sorry it has come to this. 😞 

Praying for your dad and your whole family. This is so hard, and I know how hard you have been working to make your dad's life the best it could be.

Well, I felt kind of guilty today.   He was driving me crazy and I am afraid I got a little short with him.   I told him he was going to a facility associated with the hospital and he started a barrage of questions.   How far North is it from the SC state line?   How many beds does the facility have?   How many nurses?   How far from your house?   How much is it?   and then he would ask each of these questions multiple times.   

THEN he started in with the Jan. 6th insurrection and how the committee had asked HIM personally what his vote would be and he was waiting for them to get back to him on how his vote influenced their decision.   😂   He clearly is watching too much of the news channel in there!

[Harriet Vane]

Don’t beat yourself up.

Those conversations start off okay and quickly become exasperating and then it’s just agonizing. Those conversations hurt. 

Warm hugs.

[Katy]

Hugs.  That's both good and bad news. I'm sorry he's giving you such a hard time.

[Soror]

(hugs) I'm glad to hear he can go to the hospice facility. Prayers for your family in this difficult time.

[Melissa in Australia]

hugs

[Laura Corin]

I'm sorry this is so hard @DawnM.  You continue to be an amazing daughter to him.

[TexasProud]

Dawn, you are doing a good job in a really tough situation. So hard to parent our parent and to watch the decline. 

[LifeLovePassion]

You are doing your best in a difficult situation. I'm glad they will admit him to inpatient hospice so you can know he's taken care of. 

[itsheresomewhere]

The denial that goes on at this stage is huge.  My own relative is still insisting that they don’t need oxygen yet can’t walk across the room without being out of breath and needing a rest. Just know you are doing everything in your power for him.  You have been a wonderful though all this and sometimes we get short and that is human.  

[ScoutTN]

Dawn, you have truly honored your dad by working tirelessly to give him the best care possible. I am glad you were able to secure the hospice inpatient spot for him. I hope you can rest a bit, knowing that he is safe and well taken care of. So sorry for this difficult road! Praying for you and your dad this morning.

[BusyMom5]

Hugs, I'm so glad they are getting him in the hospice facility.  The last few years have been so hard, but you've been an amazing support for him.  

[Scarlett]

14 hours ago, DawnM said:

Well, I felt kind of guilty today.   He was driving me crazy and I am afraid I got a little short with him.   I told him he was going to a facility associated with the hospital and he started a barrage of questions.   How far North is it from the SC state line?   How many beds does the facility have?   How many nurses?   How far from your house?   How much is it?   and then he would ask each of these questions multiple times.   

THEN he started in with the Jan. 6th insurrection and how the committee had asked HIM personally what his vote would be and he was waiting for them to get back to him on how his vote influenced their decision.   😂   He clearly is watching too much of the news channel in there!

Ok I lol because of the January 6 insurrection.  For the other stuff I am sorry.  I follow a family in TT whose dad has Alzheimers and sometimes they sound a little short with him…..two things though….he is VERY hard of hearing and he wakes up,every morning asking the same questions.  Where’s my keys, where’s my wallet, where’s my house. Where’s is my brother Bob ( he died 16 years ago.). I don’t know how they all don’t go insane.  

Edited December 20, 2022 by Scarlett

[Halftime Hope]

14 hours ago, Ottakee said:

This exactly.  End of life stuff is so hard but you have done so much to make it the best it can be for him.

You captured it exactly...thank you for putting words around what so many of us are thinking!

 

[Storygirl]

I'm glad that he qualified for hospice and hope that he finds some peace there, and that it ends up being a good placement for him. It's tough for this all to be happening at the holidays, and I hope you and your family are able to find joy in the season during this transition time.

[Halftime Hope]

14 hours ago, DawnM said:

Well, I felt kind of guilty today.   He was driving me crazy and I am afraid I got a little short with him.   I told him he was going to a facility associated with the hospital and he started a barrage of questions.   How far North is it from the SC state line?   How many beds does the facility have?   How many nurses?   How far from your house?   How much is it?   and then he would ask each of these questions multiple times.   

THEN he started in with the Jan. 6th insurrection and how the committee had asked HIM personally what his vote would be and he was waiting for them to get back to him on how his vote influenced their decision.   😂   He clearly is watching too much of the news channel in there!

The loss of control is incredibly difficult for the adults who are used to being in charge. (Thinking of both my MIL and FIL.)

 

[DawnM]

5 hours ago, Scarlett said:

Ok I lol because of the January 6 insurrection.  For the other stuff I am sorry.  I follow a family in TT whose dad has Alzheimers and sometimes they sound a little short with him…..two things though….he is VERY hard of hearing and he wakes up,every morning asking the same questions.  Where’s my keys, where’s my wallet, where’s my house. Where’s is my brother Bob ( he died 16 years ago.). I don’t know how they all don’t go insane.  

My dad is very hard of hearing as well.   And my dad's name is Bob.....🤪

[DawnM]

Dad was moved to the hospice facility at 1am this morning.   

[Ottakee]

15 minutes ago, DawnM said:

Dad was moved to the hospice facility at 1am this morning.   

Hopefully it is a good fit for him and will give you some peace of mind knowing he is well cared for

[Innisfree]

I hope he’s comfortable and you can relax a little. Sending hugs.

[Scarlett]

39 minutes ago, DawnM said:

Dad was moved to the hospice facility at 1am this morning.   

What a weird time to move him.  But I am glad he is there.  

[Grace Hopper]

1 hour ago, DawnM said:

Dad was moved to the hospice facility at 1am this morning.   

I hope that wee hour move helped him remain somewhat drowsy through it and that he easily transitions. Peace to you, Dawn. 

[LifeLovePassion]

I'm glad he is safely there. Peace to you during this time.

[Melissa in Australia]

Your whole family are in My thoughts

Huge hugs

[DawnM]

13 hours ago, Scarlett said:

What a weird time to move him.  But I am glad he is there.  

I think that since it was considered a non-emergency they just transported him when they had time.

[Zoo Keeper]

Praying for you and your family, Dawn. 

[DawnM]

The hospice house is beautiful and the rooms remind me of the hotels with suites where there are essentially 2 areas and a sofa that comes out into a bed for overnight guests, etc...

And the people are so nice and helpful.

[freesia]

Oh, Dawn,  that sounds wonderful. I am so glad he’s in a good place that is also beautiful. That would mean a lot to me in your situation. I pray peace for all of you. 

[fraidycat]

I'm so glad his suite is nice looking and comfortable for family to visit and that the staff are good people. I assume that these small comforts help you to feel that he is in a good place which allows you to breathe a little deeper.

[TravelingChris]

A nice place is so important when you aren't feeling well or anxious.  I am very happy he is in a good place. Merry Christmas to you and your family, Dawn.

[Scarlett]

1 hour ago, DawnM said:

The hospice house is beautiful and the rooms remind me of the hotels with suites where there are essentially 2 areas and a sofa that comes out into a bed for overnight guests, etc...

And the people are so nice and helpful.

That makes me so happy. 

[ScoutTN]

Glad it is pretty and comfortable. Glad he’s there before this wretched winter weather hits. 

[saraha]

Hugs Dawn