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pronker Asked September 2021

If Spouse comes home from rehab after 90 more days, a tenant may work out as a paid caregiver p/t. What are the benefits/pitfalls of this?

Spouse is recovering from 4 broken ribs, a severely sprained R hand, can currently stand and walk with walker if attended; he's a fall risk after 9/1 and 9/5 falls. Tenant is 37, male, and has lived with us for 2.5 years. He's always been kind and helpful to carry things if I ask for help because he's strong; he works about 30 hours outside the home weekly, has his own car, and he and Spouse know and like each other.


 


Currently, he pays $450 for one upstairs bedroom (full house privileges) two doors down from the master bedroom, so he'd be within hearing distance of any call from Spouse for helping to the toilet, etc. I'd forego the rent, the hours would be about 6 hours daily. He hasn't any home health care experience and I've not mentioned the scenario to him. Thanks for any input.

OuterBanks74 Dec 2021
I am sorry for your loss.
pronker Dec 2021
I'm grateful for your condolences.
Isthisrealyreal Dec 2021
Pronker, I am so sorry for your loss.

May The Lord be with you and your family during this difficult time. May HE give you grieving mercies, comfort and strength. May you feel HIS arms around you, lifting you up and holding you tight.

My prayers are with you. Great big warm hug!
pronker Dec 2021
Many thanks for the condolences and prayers!

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97yroldmom Dec 2021
Pronker
So sorry for your loss. You worked hard to care for your dear spouse. Take care.
pronker Dec 2021
Thanks, I will. The workload got me down and this site helped so very much.
BarbBrooklyn Dec 2021
Pronker, he certainly put up a good and long fight until the very end. And you, dear lady, have strategized and pondered and done your very best for him throughout.

I am so sorry for your loss. Be comforted by your good memories and please be gentle with yourself. (((((Hugs)))))).
pronker Dec 2021
*hugs back* Many thanks for the practical help and the moral support. It's been a trial for him and we've so many memories after 36 years.
gladimhere Dec 2021
Pronker, I am so sorry for your loss.
pronker Dec 2021
Thanks for the kind words; the support has been phenomenal from family, friends, and this website.
Isthisrealyreal Dec 2021
Pronker, I pray that you get your hearts desire.

20 years is a darn good fight, he has done well. We would all be pretty worn out after that much time.

Will you have enough help at home to make sure you are okay?

Have you talked with Medicare to find out if they will extend the 100 days. It's almost time for a reset, maybe they will, it's worth asking.

Continued prayers for you and your family. Great big warm hug!
pronker Dec 2021
Many thanks for the prayers and hugs. Spouse passed away this evening with family at his side.
pronker Dec 2021
@sp19690 Yes, he has multiple issues and under 'settings' in my profile they are listed: alzheimer's/dementia, cancer, heart, etc. He's struggled for 20 years and been bravely handling his treatment. Now he's tired. I'm not mad at him.

BarbBrooklyn Dec 2021
Pronker, do the docs have any idea why he's so weak? (((((Hugs))))))
pronker Dec 2021
((hug)) Hello, thanks for replying. The dementia seems to have taken him fully, along with yet another UTI that's treated at his rehab with antibiotics and hydration, and he'll be reevaluated on the 4th. He just stopped taking in nourishment after a very long time (2 months) of eating "25 per cent of available meals" per the RNs and still drinking, yet now he's stopped drinking, too. My mom was 90 when she did this and we knew what was ahead, so we arranged for family members to stay shifts with her; the facility showed tremendous kindness throughout the ordeal and allowed us to sleep in her room with one of those chairs that becomes a bed. I'm unsure if he'll come home to a downstairs room to die in; it's burning me that he begged me to let him come home two weeks back and this is how that turned out.

There's a way for him to end suffering and that's by passing away; it's so awful to see him gone from 230 pounds on 8/17 to 157 this week. He slept the whole time of the visit today. I've made final arrangements via an acquaintance who's a retired funeral director, and he's most helpful regarding interpreting the jargon that all businesses use.
Isthisrealyreal Dec 2021
Oh Pronker, I am so sorry to hear that your husband is doing so poorly.

Prayers and hugs for you dear lady.
pronker Dec 2021
(hug) You're so kind; yes, he's doing poorly and rehab is treating his latest UTI with antibiotics until the 4th and then the hydrating IV will continue until the 6th, the last day of the 100 days of Medicare. Discharge to the facility or to home with Hospice is the next step; he's not talking, drinking or eating. It's terribly hard for him and the dementia seems to have taken him fully. His cardiologist at the last hospital he was in mentioned this as a symptom of dementia and from my mother's experience, it rings true. She passed with family at her side and such is my wish for my husband.
pronker Nov 2021
Spouse is unable to rally and sleeps most of the time during visits. He's said "I just can't do this" as he holds my hand. He was aware of his sister's visit yesterday and hugged her, as he did our son. I'll visit today to hold up a tablet in front of him containing a favorite website in hopes of providing focus.
pronker Dec 2021
Monday he held up the tablet and looked at his favorite website; he was trembling, but could do this and I could see he was reading. Tuesday there was only moaning in his sleep, no words. Wednesday was a little more awake, still moaning. Nurses and CNAs said he's stopped eating, drinking and taking his meds.
PeggySue2020 Nov 2021
I think this is a bad idea. Either the tenant is a live-in, in which case you must provide a place to sleep and meals plus a salary, or he remains your renter.
pronker Nov 2021
Thanks for replying - Tenant boards with me in my house and it's not looking like he'll do care because LTC seems to be in Spouse's future.
pronker Nov 2021
I came back from a conference with the care team at Facility to find Spouse on floor, conscious and calling for help. The RN and CNAs came quickly and Hoyered him back into bed; no breaks or bruising says RN, well it takes a while for bruises to appear because they don't just spring to the skin's surface. Bed rails are considered restraints, although an MD can order them. RN pushed his bed to the wall and said she'd get rubber mats on the unprotected side.

Conference had concluded that he "can sit for 30 seconds at edge of bed during PT and then says it's too painful" because of catheter in place and bedsores; said "we can encourage but not force because that would be tortuous even though he's not responding well to PT; he's told us he wants to come home if I can handle his care". Conference concluded "we must plan for discharge to home, or continued placement here for X dollars monthly, or another facility." The X dollars seems doable at this point because of his pension; will need to contact VA to see if this will work.

Today is Youngest's birthday and the fear that his dad might die on that day subsided; the fear arose because of Spouse's sleepiness on three previous visits, really groggy. I believe this was due in part because his TV is a complex thing and the remote hard to figure out, so he lost that stimulation; 10 days ago, he was telling me about various news events and wanting my opinion. Now his original TV is back and he seems uninterested. At my return from the conference, he said "I live here now, don't I" and I said "Yes, until you get stronger."

BarbBrooklyn Nov 2021
Pronker, thanks forvthe update. Have you got an appointment to talk to the doctor about how this is all going?

Do they what to continue to aggressively treat what keeps coming, or will they suggest palliative care or Hospice?
pronker Nov 2021
Yes, I'll speak with his dr. and discuss hospice/palliative; there was a care team meeting last Thurs. that discussed continued OT/PT, etc. I'm clearing out the dining room for homecoming if it comes to that decision because he's suffered so much. At the moment, the 18th is our son's birthday so the hope is that he doesn't die on that day. It's a terrible time. Thanks for your attention.
pronker Nov 2021
Spouse slept most of Sunday's visit, with a few moments of clear speech and then mumbling that I couldn't understand. He did ask the time and when I said 2.30, he said "oh I've missed the Michigan game." His nurse checked his vitals and said he's okay. It's clear he's suffering a great deal mentally, and my 2 hr. visit did not help him. I gave him water and then he became distressed when I couldn't understand him. The RN said he told her "I just want to rest."

Saturday's chat with his PT revealed "when he was in isolation 3 weeks ago before he moved into the 4-person room, I got him to sit up, stand up with one person supporting and he did some side steps; now he fights with me and says he hurts too much to move." PT said his Foley cat hurts and "has some blood" around the opening. I suggested to RN that his Depends from home could be used and she said since he's bedridden "it would be hard on him to pull them up."

Spouse has never made a will; as a retired attorney, he's said all along that "everything such as the house and car is in your name so I don't need a will." Whether he does or doesn't, the circumstances if he continues to downslide seem to preclude making one now.

His TV didn't have a remote, so I got a universal one and programmed it to work on it; he said "oh now it works" and was too sleepy to try to use it. It's sounding like mornings are better for visiting to see if anything's better for him in the a.m.
Isthisrealyreal Nov 2021
Big hug and prayers for you and your DH.
BarbBrooklyn Nov 2021
I'm so sorry for this development, Pronker. Good wishes for a quick and complete recovery. (((((Hugs)))))
pronker Nov 2021
Thanks! Doctors flooded him with antibiotics, others checked his heart thoroughly, and morphine eased the pain. He's gained 9 pounds and seems more interested in eating. He's returned to Nearby Rehab after 1 week and today will enjoy a visit from his daughter and grandson, who live far away.
pronker Nov 2021
On Weds., Spouse returned to ER and then admission to hospital 10 miles away. Rehab will keep his bed for a certain time; his potassium rose to dangerous levels, a UTI made him hallucinate, and yesterday Hospital Dr. said he'd developed sepsis. On antibiotics intravenously because Weds. at rehab he refused to swallow pills, even though I and his nurse suggested one by one. Hospital evaluating for "swallow test" before they would give him anything by mouth; he did okay. Thursday's visit showed him more or less at his "new normal." Youngest visited Friday and I shall visit today; visitors prohibited unless "end of life" so were able to visit by stressing this phrase.
Isthisrealyreal Nov 2021
Oh pronker, I am sorry your DH is having such a rough go of it.

Thankfully they caught the infection.

Prayers sent for all of you!
Isthisrealyreal Oct 2021
Has the doctor prescribed anything to help with DH distress?

I would ask, sometimes just a tiny dose can take the edge off.

Continued prayers for you both.

Are you taking care of you Pronker?

Great big warm hugs for you both!
pronker Oct 2021
I'm thinking of cannabis for him if the dr. agrees. Many thanks for the prayers and yes, I'm doing so so. (hug)
BarbBrooklyn Oct 2021
More (((((hugs)))) for you and DH, Pronker. You're incredibly strong!
pronker Oct 2021
I'm glad you think so and I hope his day goes better than yesterday. It's so difficult to see a grown man in such distress. ((hug for him))
Isthisrealyreal Oct 2021
Sending prayers for you and your husband.

Great big warm hug!
pronker Oct 2021
Thanks for the prayers. He lost 6 more pounds and his RN says 'he's only eating 25 per cent intake each meal.' She asked if any cancer history and upon learning of his 3x bouts, said 'maybe the cancer returned.' If he's in for bout #4, and I do not know that he is, then it's serious beyond words. ((hug))
JoAnn29 Oct 2021
Just read your updates. Just wanted to say something concerning the Tramadol. This is not recommended for the elderly. It caused hallucinations with my Mom and a 50+ yr old friend. Just keep that in mind if husband seems to have this problem.

"I resolved not to supply him with any non-prescribed extra doses and refrained from fighting with her over the phone."

Your husband is in rehab, correct? If so, you can't give him any medication other than what is ordered by the facility doctor. Not even OTC. The nurses have to keep track of everything he takes by law. So, if your SIL thinks differently, put her straight. Rehab is in charge of his care. All you can do is ask if they can up what he is given. Seems to me they are trying not to give him a lot of Tramadol so using Tylenol. I also think the Tylenol they are using is prescription strength so stronger than OTC. For me, I like Advil for pain relief. Tylenol doesn't seem to do it for me. Maybe he would do better on another pain killer.
pronker Oct 2021
Thanks for the insights; no hallucinations for Spouse in rehab and he receives it 3x daily plus the tylenol in between times. The rehab nurses deal with his demands; I'm sure they've had more obstreperous patients than him. When I visit thus far, it's 50 per cent a "good visit" with minimal complaining and the other 50 per cent, well it's the call button every 15 minutes. He's gotten no extra meds from me and it seems good to time visits not to coincide with mealtimes such as 4.30 when dinner arrives to avoid distractions because if I'm there he wants to go on talking. Youngest visited over the weekend and he and his dad had a good time.
pronker Oct 2021
Thursday said he threw up twice and then demonstrated some glimmering of awareness with "there must be something wrong with me when I just can't eat." This represents progress from Mar.-Apr. 2020 when the continuous "I just can't eat much" came out at about 75 per cent of our mealtimes at home together and he lost 20 lbs. in 40 days; he did pull out of that slide after receiving 9 hrs. weekly caregiving from the VA aide starting in June 2020 which helped so much with his exercising and mental outlook. I'm seeing another slide with his different commentary in Oct. 2021.

My take is that he's rarely been interested in considering the tremendous jolt his body receives with the 15 sorts of meds he's on daily; they'd make anybody nauseous and such is stated on their labels. Youngest will visit Sunday, which ought to help Spouse's spirits.

pronker Oct 2021
RN said yesterday he's developed bedsores because he is turned regularly but "cheats because he asks for pillows to be placed at his back and underneath him so he doesn't roll. This means that the pressure isn't relieved." Whenever I've entered the room, he's slightly elevated in a partially sitting up position. Physics dictates that the body's weight slams down upon the butt rather than spread the whole length of his side if he were fully flat, even part time. Dismal news, along with "he's a 2 person job to pivot, stand or move. He's very weak."

Better news is that he's still eating the pureed diet and his dentist says she'll work on his upper plate even without doing a "house call" so at least there'll be something to help him eat. He's able to hold a book better and the brand new TV helps with boredom.

BarbBrooklyn Oct 2021
Thank you for the update. It does sound like he's settling in a bit!

Such a wise decision not to engage in an argument with SIL. Wishing for strength and peace for you in the days to come!
pronker Oct 2021
Thank you and best wishes to you, as well.
BarbBrooklyn Oct 2021
How is it going, Pronker? Hope things have gotten easier.
pronker Oct 2021
Thanks for the thoughts. It's going better. Spouse seems more acclimated to rehab life; someone comes in to feed him because the R hand remains curled with very little strength; he's able to hold a book now so that's helpful because the TV sound went out; the incontinence remains the same with little control so it's a catheter and something else, maybe just a pad to lie on to be switched out when dirtied. He got embarrassed when he pooped when I was in the room; I went out to the patio while he was being cleaned up and heard him hollering through the glass, but it was not as long a time of hollering as it was one week ago. The CNAs pull him far to one side and he fears falling from the bed. Mentally, there are many memory glitches and he realizes this and gets upset with himself.

The best news is that he's returned to eating. Plan of care says OT and PT for more days to strengthen enough for walking, I guess, because he says the aides move his feet and legs while he's in the bed. I do not know if he'll ever walk and will need wheelchairs all the rest of his time on earth. I'm pursuing research of LTC. The hand tremors are pretty bad.

Saturday his sister and he talked and he complained to her that the tramadol and OTC meds like tylenol that alternate with the tramadol aren't being given often enough for his pain; he can't turn himself over in bed so his back and butt get sore. I've witnessed this sitch enough times since 9/1 to know that he forgets when he's had pain meds last; his sense of time is skewed. SIL wants me to supply him with tylenol from home "so he can medicate himself when he's in pain in between supplied doses." I resolved not to supply him with any non-prescribed extra doses and refrained from fighting with her over the phone. She's 300 miles away and naturally enough doesn't want to think of him suffering; I don't, either.
BarbBrooklyn Oct 2021
Pronker, I totally get the sadness of the "finality" of a placement.

I can only imagine how painful this is. It's the end of an era in your life. Grieve, mourn, shake your fist at the heavens. But we move on to the new normal.

(((((Hugs))))))
pronker Oct 2021
Thanks for the thoughts and yes, it felt, especially in the first few raw days, like mourning. Seeing him moaning as he sprawled on the floor in Fall #1 brought nightmares the next few nights; Fall #2 came at the end of a 48 hours when his injuries precluded him from many activities although he'd not blacked out with that fall. I "heard" his walker coming up the ramp in those moments upon waking when one's brain is half asleep. My own brain is fried so yesterday I left a packet of important docs such as bank statements behind at the Postal Plus upon taking copies of them; I'm returning when PP's open in the hopes that someone turned them in at the front desk.
BarbBrooklyn Oct 2021
Pronker, it sounds as though he is acclimating a bit, thank heavens!

Keeping information simple is such a good idea in his current state.

With regards to Hospice/palliative care, what we saw at some point was that trios to ER from the NH home were causing more rapid decline.

We didn't do hospice right away but asked the NH to call us before they transported to the hospital.
pronker Oct 2021
Thanks for the wishes and yes, he's a bit more in the zone of hospital care. I agree about the ER and shall go to this place today to sign papers; this is the facility that I investigated for my mom about 8 years ago. The tour showed me a clean place at that time. We used to do crossword puzzles and sudoku together, so it seems appropriate to bring puzzle books along with a banana for me to eat and perhaps get him to mirror my behavior? Good idea re the call first before the ambulance trip to ER.

The thoughts keep recurring 'he'll never come in the front door again' and 'we'll never sit at the dining table again' and so forth. Every now and then memories wash over like a big wave and I drown rather than surf.
BarbBrooklyn Oct 2021
Pr, thanks for the new update.

Will he be moved to the Nursing Home "Medicaid Pending"?

Has anyone mentioned contacting hospice?
pronker Oct 2021
"Medicaid Pending" is the term Admissions Manager At Hoped For Nursing Home used, yes, and New-Hospital-Dr. said he'd recommend transferring Spouse to the Hoped For nursing home nearest the house. I'd mentioned hospice to Rehab place, but the Admin said 'it's too soon,' but I'm keeping hospice in mind if Spouse doesn't rally. During Thursday's visit, I got him to eat some soup, pudding, apple juice and sherbet after his stress test. It's something, at least.

The TV takes 90 percent of his concentration, he has the remote constantly in his hand; the sprained R hand seems a tiny bit more functional.

Good aspects include him profusely thanking me for the visit and not asking to 'take me home.' We talked baseball, football and current events; I put through a call to his sister and they chatted for awhile. He talked to himself during an ad, saying "I don't know what's happening." I resisted the urge to explain long-windedly because prior attempts agitated and did not help him to acclimate to "new normal." I attempted to "just enjoy him as he is," per many folks' advice. He's agitated whenever an attendant enters the room and does something to his bedside tray, telling them to arrange things precisely within his reach; he's learned their names and introduced me to them.
pronker Oct 2021
100421 Spouse obtained approval from rehab dr. to be moved to hospital due to 'failure to thrive'; speech therapist today at hospital communicated that liquid diet such as jello, pudding, etc. will begin; noticed the moaning; got him to drink some water; says "he became upset when I interrupted his long story about his original fall, he's not focusing on the present circumstances; is there any PTSD involved or mental issues?" She's gotten a handle on him and circumstances are more hopeful than at rehab. Unsure about Medicare/Medi-Cal etc. status, everything seems okay at present.

MargaretMcKen Oct 2021
I don’t know all the details of this complicated situation, but 2 comments anyway:
1) If you are still considering the tenant’s involvement, could you drop down the tasks involved? For example, just ‘night duty’ might help. It’s a long time at any hourly rate, but often with little work involved, and it might even work with the rent offset.
2) If your husband is deliberately refusing to eat or co-operate in other ways, remember that it’s his choice. If you can’t do what he wants, and he won’t compromise, he is choosing his own path to death. It seems wrong, but people do this all the time in many many different ways. It’s his responsibility, not yours.

Sympathy and best wishes, Margaret
pronker Oct 2021
Thanks for your input and wishes - Spouse currently back in hospital, different than original County General, with prescribed liquid diet.
BarbBrooklyn Oct 2021
Pronker, thanks forvthe update.

One thought on the eating; years ago, FIL was in the hospital and kept saying he couldn't eat. Long story short, someone from Speech came to see him--turns out he couldn't SWALLOW (he'd had a stroke which had damaged both his word retrieval and swallowing).

PR, he can't come home, even if the emts can haul him up the stairs. How would he get out in a fire--it's just not safe.

Have you consulted a Medicaid planner or elder care attorney? Not sure about Medicare re-setting--I think you have to be out of the hospital for 60 days for that to happen. It's a good question to ask the Social Worker.
(((((Hugs)))))))
pronker Oct 2021
Thanks for replying - Spouse currently in different hospital under MD's order and she noticed his heaving upon eating anything with texture, loud moaning, and strange hiccups that she called "almost forced, not like regular hiccups upon eating/drinking, is this behavioral?" to which I answered yes.

The room is ready for occupancy and we'll see what happens down the road; taking one day at a time. Unsure of Medical-or aid - or VA status but I'm keeping them in the loop of current developments.
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