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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!
So sorry for your loss. You worked hard to care for your dear spouse. Take care.
I am so sorry for your loss. Be comforted by your good memories and please be gentle with yourself. (((((Hugs)))))).
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!
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.
Prayers and hugs for you dear lady.
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."
Do they what to continue to aggressively treat what keeps coming, or will they suggest palliative care or Hospice?
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.
Thankfully they caught the infection.
Prayers sent for all of you!
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!
Great big warm hug!
"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.
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.
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.
Such a wise decision not to engage in an argument with SIL. Wishing for strength and peace for you in the days to come!
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.
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))))))
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.
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.
Will he be moved to the Nursing Home "Medicaid Pending"?
Has anyone mentioned contacting hospice?
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.
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
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)))))))
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.