I’m reading this carefully because my mother is also hitting the 21 day rehab limit and will be discharged from acute rehab next week. But what from what I’ve heard (my sister is the liaison with the staff) they will be discharging Mom to a lower level of rehab, not just sending her home. EPTR, I’m surprised the facility isn’t sending your mom to subacute rehab.
Having O2 tubing is a trip hazard, so she needs to learn how to work carefully with the tubing. They should be carefully monitoring her O2 to determine if she died needs it 24/7 vs just for sleep or sleep and activity.
As someone above suggested, she should have a schedule of when she goes to the bathroom so she can try to go back to being continent again and use pull-ups or similar.
Be careful. You seem to be at a crossroads here. It is often one sib who takes on most of the work, and that is often cause for resentment. I’ve read some awful stories on other message boards. If the sib with the suitable house is reluctant, don’t pressure her to take in your mother. Does your mother have money to pay for private aides? Who will be there at night when she needs to go to the bathroom? It appears that it might not be safe for your mother to ever be left alone again.
I spent many years dealing with this. Where does she live now?
At first we had aides coming, but soon that wasn’t really cutting it. We found an all in one facility for my mom, it had independent apartments, with a dining room and all kinds of services, it also had a sub acute rehab facility and a skilled nursing facility in it. It saved our sanity. It is too much to expect one person to take on the care of an elderly parent. Even with aides, that person is the manager of it all and it takes a toll on them and their own family.
I went on more than one occasion crying to the social worker at the hospital and to her doctor. Medicare will send a nurse out as well to your mom. You need to tell them her living situation without help.
The senior I am responsible for was also not “ready to go home” after release from rehab. I moved her to assisted living and set with her that if she could do some clothing and toileting by herself with only an occasional accident here and there and could walk with a walker that I would move her home with help. Within 2 months everyone felt comfortable with her returning home. She was managing the toileting, getting dressed, walking short distances with a walker etc. We had 24/7 care for a month as a precaution and for more evaluation and then cut it back to 10 hours a day. She is now in a nursing home as there was steady decline at home but she was able to “get” 2 more years in her home. It’s not inexpensive. It’s horribly stressful navigating all this stuff and sometimes decisions have to be made really, really fast. If I were the OP and not confident that home would work out with out 24/7 support then I would do a temporary stay in assisted living.
I agree it is a heavy load to have someone who needs 24/7 care to live in the home of someone – whether or not they are officially “working.” Two of my friends took on family members in this manner. The elders steadily declined and stayed up all hours at night and started wandering and soiling linens. One of them ultimately had to hire someone to come in 2 nights/week to be in the room with the SR so she could guarantee herself 2 nights of sleep/week. She had to scale back her job from full-time to a few hours a week and their household income fell dramatically from this. Grandma was supposed to be with them for a few weeks until she died but she kept rallying and lived many years with them. It definitely took a toll on my friend and her H (he had a heart attack while she was caring for grandma and living under their roof).
My other friend who is caring for her parents has had to hire respite care when she and her H need to leave town, as it isn’t safe for her folks to be on their own. It is very stressful for her and her H as well, plus exhausting. Despite her caring for her folks, her mom gave the son all her properties and assets, “because he needs it,” even tho he doesn’t visit, provide any care, or help AT ALL. He’s supposed to be giving an “allowance” to the mom for getting all the assets, including rental properties, but he rarely does and it is a sore spot and causes friction.
Long story short, the solution has to be one that works for EVERYONE, especially someone who MAY take on a heavier burden. Folks can live needing care for many, many years, so a LONG TERM solution needs to be considered and pressuring someone to take the load is NOT a good option.
Even though the full burden of care should not fall on one sibling, the job of being point person with the rehab place should. And you should pick the sibling that is the best communicator and problem solver. The case manager or social worker at the rehab should be told, verbally and in writing if she is being difficult, that the senior does not have a safe situation at home with no help, and cannot be released to the home. Then, a transition to a safe facility with a lower level of rehab can be planned.
If she does not have Medigap coverage this may start costing real money after 20 days. Do you know what insurance and other resources she has?
Sorry you are having to deal with this. It is scary to see how fast things can start moving downhill once a major incident occurs.
Hi all. We met today with the social worker, nurse manager and PT. They had refused as of yesterday but I think they reconsidered when they realized that we are really angry. We decided to move my mom to a lower floor in the same facility starting tomorrow (because a bed is available and may not be on Saturday). It is a long term care floor. She is still eligible for PT until Saturday which was her original discharge date so they will bring her up to the rehab floor for that (note to self to follow up with that). This will be on a short term basis until we can determine if she will ever be safe to go home. If she does go home, it will be with a full time personal care assistant in place. Out of pocket.
Her oxygen…yes, it drops into the 70’s if she is off it so she will need it 24/7 from here on out. She has both COPD and severe scoliosis which compresses her lungs and heart more and more as she ages. Lungs are compromised from the inside and the out.
As far as my sister goes, no, we are not going to pressure her. She offered many times before but my moms care will be profound at this point and my sister works. I don’t hold any bad feelings about it.
We are appealing the discharge from the rehab floor. We feel that her treatment has been misrepresented. She has not received Pt or OT everyday and was described as non-compliant (you would have to meet my mom to know how laughable that is). I spoke to both the OT and the speech therapist (for memory) and asked them if my mom was ever non-compliant. No. So why was that word used by the social worker to my mom? My guess is that they want that on record as evidence to discontinue services. My sister is appealing it. This facility is unaware that my sister works for an agency that investigates Medicare fraud.
I’m glad you are appealing and hope your mom gets the care she deserves. If her O2 drops to 70, you are right that it sounds like she will continue to need 24/7 O2 at higher and higher flow rates.
It’s great that your mom is a sweetheart and that the noncompliance is a CYA ploy rather than your mom ever refusing to cooperate.
So glad she has a bed that COULD be long term care if needed. Wow–lots to process.
?! So your friend is paying for respite and her mother’s expenses out of her (your friend’s) own pocket?! This is exactly the sort of thing I read on the caregiver message boards. The attitude often is that the uninvolved sibs have to be put out of one’s mind and the caregiver should be glad that THEY are doing the right thing by the parent, and that there shouldn’t be resentment. Encourage that sort of mindset and people will continue to be steamrolled by their sibs. If the parents pull that kind of stunt (leaving all to uninvolved sib), the caregiving sib should just WALK AWAY.
But if they walk away the obviously addled parent will be the only one to suffer. And the caregiver will feel monumentally guilty, because that is their nature.
Seems to me that what they need to do is have a real showdown with the sib and probably get a legal agreement to boot so that they don’t have to fight the same battle over and over.
But a real showdown with the sib would probably do nothing (and the sib knows it).
Deliver Mama to Sonnie Dearest’s house, and then he can figure out what to do with her. If he doesn’t like it, he can make sure his sister gets compensation from Mama’s estate.
^^whomever has legal power of attorney could pay an agreed upon rate out of the current estate to whomever is doing the caregiving which takes it out of the future and puts the financial onus where it belongs at the time it belongs.
And often there isn’t a family member who has a house floorplan that works for a senior invalid or even a home that is accessible for a wheelchair bound person…so presuming that “one of the kids” can take in an aging senior is not always feasible.
OP I’m glad you found a spot for your mom. Hopefully she’ll continue to recover and get strong enough to someday return home with some help. If not, she’s in a safe place now and you will have time to recover and make decisions.
What SHOULD happen and what DOES happen are often worlds apart. My friend knows her brother has gotten the better end of the deal and is taking advantage and being an awful S and brother. His S is embarrassed but since grandma gave S all her assets outright and now has virtually nothing, there will be no estate.
My friend is doing what she can and sleeps well at night, but is VERY disappointed her brother is choosing to be so irresponsible. Yes, everything is being paid for by my friend. At least she has found a way for her and her H to be able to visit their kids without guilt and worry about whether her mom is receiving proper care.
@HImom, I’m confused. I thought that the mother gave all her assets to her son, while her D is providing all of the care. Is there a grandson involved?
The S has a S, so yes, there is a grandson. He is sad his dad is such a heel. My friend has 2 kids–one recently graduated from college and the other still in college. She was very hurt that her mom chose to give everything to lazy brother who is so neglectful.
Thanks for clarifying. I wonder if a family meeting with the grandson present might shame his father into acting.
My friend has just given up and it has badly strained what relationship she had with her freeloading brother. At least she still has some positive feelings toward her nephew.
Sorry about the hijack–back to the original thread. Just wanted to illustrate how tough and long term placements can be and how it can cause very sad divisions among family members, especially as elders age and need increasing care.
I’m curious about the timeline. Did your friend take in her mother before or after knowing that her mother gave everything to the lazy brother?
My friend took her parents in and at some point the mom and dad decided they wanted to give everything away so that in the future they’d qualify for Medicaid. They were living in the house my friend remodeled so they could live together (after my friend sold her home to move to take care of them). Yes, they knew that my friend was shouldering their care alone when they gifted everything to the son who rarely visited and did nothing for them.
In gifting all to the son, the parents claimed he needed it more, since my friend is a nurse and her husband is an engineer while the son is a struggling businessman.
In gifting all to the son, the parents were extremely unfair IMHO. It exacerbated the rift between the kids.