I (19-year-old f) and my mom (46-year old) currently have my grandpa (mom’s dad) living in our apartment. For a background, we have a 2-bedroom apartment. Me, mom, little brother (6-years-old), and grandpa all live here. Grandpa has a bed in the living room. He has Parkinson’s disease and is at the age where he pees and poops himself every other day (refuses to wear diapers). He can barely walk by himself with a walker, he falls multiple times every other day, makes terrible decisions (sneaks out to walk to his truck and usually falls in the parking lot), etc. We had to take his keys because he actually snuck out and drove into a ditch. He tries to hitchhike down the road to his broken down house that is unlivable, but falls in the road instead. We have to provide full-time assistance to him every second of the day and it’s at the point where our lives are hell. No one in the family helps us, they just left him for us to manage. We can barely afford bills because of how much extra we have to spend on him. Our house constantly smells like diarrhea and urine because of him. My mom recently got a full-time job, working 9am-9pm almost every day. So it leaves everything up to me. I can’t properly care for him because of all the differences, I can’t pick him up when he falls, change him when he pees or poops himself; he just sits in it until a hospice nurse comes to bathe him once a week. He refuses to go to a nursing home, and my mom and I can’t afford to put him in one. My uncle has the POA over his finances and refuses to sign them over to a nursing home. We don’t know what to do anymore. Simply being in our own home is a burden. My mom and I are constantly stressed. What can we do?
That is for your mother to do.
You need to move out and on with your own life as soon as schooling is over. Get a room in someone's home and a job, get an education. That is irregardless of whether grandfather is there or not.
Your mother sounds as though this task of caregiving is too overwhelming for her to do, and certainly it is not fair for a 6 year old to be raised in this chaos.
I am so sorry. There are, if grandfather doesn't have assets, ways to get him Medicaid placement in a nursing home.
I am thankful he is on Hospice.
As for the Hospice Social Worker to help you mother get in facility care for granddad.
Wishing you the best.
and most definitely the task of care giving for him is stressing her in ways i cant describe. but she and i are stuck right now on what to do
grandpa does have assets, he has plenty of money to put himself in a care facility but he simply refuses to. his medicaid would pay half, and he would have to pay the other half ($3800 in total), and he refuses. its extremely selfish of him as he sees all the stress hes giving us, but nothing will change his mind. :(
I would however take pause with trying to be the rescue person here. You lack the necessary legal ability to change things.
I would also say pause on laying any blame onto your Grandfather. An old man with Parkinson's Disease. PD is a neurological disease. It causes brain changes. Do not expect him to understand his situation fully. Or to manage his finances. Certainly harder ever does an older person (often with past memories of relatives being sent to BAD old dark madhouses) ever say YES move me to a nursing home!
So. Some rephrasing.
GF is not the bad guy.
Mom is not a victim.
You don't need to save her.
What do do instead..
Talk to your Mother. Explain how this effects your life. Maybe offer your support as she talks to her brother/your Uncle (POA). She must stand up for HER houshold & talk the real talk to the POA. Alternative care needs to be found for GF asap.
If Mom dismisses you, is angry, denies, or fearful of Uncle/POA etc take the next step for YOU. See a school councellor & ask for Social Worker for your family. Getting an impartial person to explain what options are available to your Mother may help set the next path.
I am sorry you have this situatuon at such a young age. Yet you are an adult & this is a great learning opportunity about life, standing up for yourself, for your brother too. About how females must be wary of having long held traditions take advantage of them.
I think the Mom needs to handle this, and our OP at 19 should likely get her own place if mother doesn't do so. Social Services is RIGHT THERE with Hospice. They need to help the mom and do their job and work on application to Medicaid and placement.
OP, do know that SS alone is not nearly enough for nursing home care which averages about 5,000 a month at BEST. So granddad will need Social Services to work with your Mom and get this done.
You should stay out of this, well back from this, and find a place of your own to live if you are out of school. You can't be responsible for this.
In order, as you asked, to make a second reply on a thread just ask the original person with the question. In this particular case that would be Beatty. Hang in there. You will get the gist of it.
Wishing you luck. You are young to be facing this but can do it. I went into the big bad city of Chicago at age 17. Of course that was when getting an efficiency with bathroom down the hall on Lake Shore Drive cost only 18.00 a week. Lordy, does time ever fly.
Best of luck.
as for dropping him off, poa would simply come bring him back and leave him on moms porch. my mom is the ‘too caring’ one of the siblings, hence why shes the ‘care slave’. people take advantage of that if you cant tell 😔
also, she and i have gotten onto him strongly, but he usually storms out and says he cant do it. hes very bipolar about the situation, sometimes hes bestfriends with mom, agreeing itd be beneficial for him to be in assisted living, saying he’ll sign the finances over, and other times hes coming at her throat saying shes a terrible person for wanting him to be in assisted living and to figure it out herself. even though (news flash) she cant without poa lol!
it really is a disaster, but im thankful for all of you giving me understanding feedback. thank you so much for your advice
A way to think about it is this.
When YOU make a change, it will force Mom to take action. When Mom makes a change, it will force the Uncle POA to take action.
If you say Mom, this is not OK. This is just too hard. I will stop helping beacuse it is just prolongong the problem.
I AM DONE.
Your Mother will need to either;
A. Quit her job & provide the care
B. Tell POA SHE IS DONE & the POA must release funds for paid caregivers
Choice A. Would impoverish your family so it must be choice B.
If the Uncle POA declines, this could be viewed as financial abuse in my book. The the Hospice Social Worker can be sought to arrange a family meeting between Mom & POA. Then an appropriate Hospice bed or respite bed located for your GF.
You & your Mother are not care-slaves at the direction of the POA.
Maybe the POA has good intentions.. idk.. he may not even know the situation? Does he? Mom & you can make it crystal clear to him.
but as you can read at this point, theres no other logical option.
mom has even tried talking to grandpa saying she would quit her job to care for him IF grandpa wanted to pay the (cheaper) apartment bills, rather than paying triple the amount for assisted living and grandpa even refused that way as well.
and you are most definitely right. i somewhat did make that choice recently, i needed a mental and physical break so i left to stay with someone. but i will be back at the end of this month. hopefully by then poa, or social worker from hospice team has been able to figure out a solution..
Secondly if your grandpa is under hospice care your mother needs to talk to them about getting him placed as their social worker can help her with that.
And if grandpa is under hospice care that means that a nurse is coming at least once a week and aides are coming at least twice a week to bathe him, as that is required by Medicare.
Hospice also supplies any diapers that your grandpa needs.
And if money is an issue for grandpa, someone will have to apply for Medicaid for him, as Medicaid will pay for him to reside in a nursing facility.
Also, if your mom is working 12 hour days. who is taking care of your 6 month old little brother? I'm just curious.
and yes hospice team does come out multiple times a week, certain nurses to bathe, talk to, check up, bring medication, etc. and they have provided diapers but grandpa refuses to wear them
money is not an issue for grandpa, he has plenty of assets to afford assisted livinf, he just doesnt want to. his social security would pay hald of the costs and his savings would pay the other half, but he still says no!
and lastly, im sorry for any confusion! little brother is 6 YEARS old and in school. hes no issue for me to care for, i just added in to be as descriptive as possible to our situation!
i of course am allowed to leave, i currently am out of state to stay with someone until the end of this month because i needed a break, but its just hard for me to stay away for long because i have my own pets to care for in our apartment.
thank you so much for all of those options, if i ever check out to the point i do leave i will look into those 😊
but trust me ive watched her try her best with this situation hand and foot for what seems like forever, shes supportive of how i feel and understands everything because she too is/was in my shoes.
also if there was any confusion, little brother is 6 years old and in school.he is easy for me to care for, it just gets stressful when its caring for a 6 year old AND grandpa.
i will admit though, since ive left (about a week ago) it does look like things have been better.
(uncle and mom have meeting with social worker from hospice tomorrow, and hospice team says they will call aps) and mom has said if those options dont work, she will take the advice of taking him to ems and saying she cant care for him anymore!
Your grandfather sounds like Dementia has set in. Its no longer what he wants, its what he needs. He needs to be in a NH. Mom needs to call APS and tell them she can't do it anymore and POA is no help.
Hospice allows an aide 2x a week. You cannot leave your grandfather unclean for this long. Its sort of abuse. I perfectly understand why you don't feel comfortable doing it. If granddad has money pay for an aide.
You are the one who wrote us. Not your Mom.
And your MOM is the only one who can address this and take action. She is the grownup. She and her brother are now in charge of your grandfather. And they are USING YOU and ABUSING your brother will all this nonsense.
You have given us a whole lot of answers (and thank you for being so participatory) as to why nothing we suggest here will work. That's because you aren't in charge, no one is listening to you, and no one is taking action; THAT IS ON THEM. Not you. You are not in charge and cannot take action here.
I so agree with Beatty, that the healthy chain reaction will occur when you leave this troubled household. This is when your mother will let the POA, her brother, know that she will not continue doing free care 24/7 of granddad. At that point she can take him to ANY ER with ANY STORY and walk out the door, letting them know he cannot return to her home where is is no longer safe for him. That she is NOT the POA and is no longer involved in his care.
At that point the ER will contact the POA. While he may not listen to any of YOU he will have to listen to the Hospital Social Workers and they will have to seek placement.
YOU are the one I care about as you are the one who wrote.
I caution you to leave this household and get on with your life.
If your mother has problems and concerns she should write us and is more than welcome here.
I wish you the best.
and thank YOU for all of your advice and replies, im sure you along with many others can now see how we’re struggling because of the situation.
i have let mom know about what you and others have said, up until yesterday we had no idea we could take him to ems or call aps, though aps was a last option because we truly do care for grandpa emotionally. but as you know the meeting is tomorrow, and aps and ems suggestions are being taken way more considerable now!
thank you again for caring about my situation, your feedback has been greatly appreciated and looked into :) if for someee reason aps, ems, and the meeting go wrong, MY next option will be to leave
As far as advice do exactly as AlvaDeer suggested in the post at the bottom “If not, then your mother calls EMS next fall….” That is exactly how the process works. Social Services, your Mom and the POA will take care of everything.
I’m not sure what stage your grandfather is at cognitively but if he is of relatively sound mind still he can revoke the current POA and assign your Mother as his POA. This can be done on your own (with some research) or through an elder law attorney who could help you with other matters as well.
I wish you the best. Let us know how it goes.
and to catch you up, poa and mom hahe a meeting with the hospice social worker tomorrow about this situation. and mom has said the social worker will be calling aps on grandpa!
and to reply about the poa, we didnt know that either! im so glad i came for help on here lol, grandpa definitely would NOT willingly sign over the poa over his finances as he knows the reason would be for assisted living, however i will let mom know about this.
thank you so much again :) i will continue updating!!
that idea would definitely be my plan if i didnt have my own lil critters there.
thank you for your reply!! :)
You and your family do not have to pay for a nursing home yourselves. They will take your grandfather's monthly income and whatever assets he has will have to be sold and 'spent-down' on his care facility bill. After they are gone he goes on Medicaid and they pay for the nursing home.
Not you. Not your mother. Not your family.
Assuming that you and your mom are on the same page about wanting your grandfather out, the next time the hospice nurse is coming, make sure you and your mother are both there.
Talk to her privately and tell her that you and your mother are going to drop your grandfather off at a hospital ER and ask for a 'Social Admit' (be sure to use this term) because neither of you are willing to allow him to stay and you're both unable to care for him.
Tell her that he will be going without care and that she is mandated as a healthcare worker to report to the state.
This is how to get him into a care facility where he will get the care he needs.
If your mother is unwilling to take any action, then you stay away and let her deal with his care needs.
me and mom are definitely on the same page, i will let mom know all of this info.
mom and poa have a meeting with the hospice social worker tomorrow and hospice social worker has said she will be calling aps on grandpa as grandpa has refused all of the options hospice has given him.
i will unfortunately not be there during the meeting tomorrow, but i will let mom know about these terms and what to say!
Once in the hospital tell the Social Worker that he can not return home it is unsafe. Tell the Social Worker that Uncle is POA and that he is responsible for grandpa.
OH.... I just got to the part that grandpa is on Hospice.
Do not have grandpa taken to the hospital as that would discharge him from Hospice.
You (actually mom) has to talk to the Hospice Nurse and Social Worker and tell them that she can no longer be the Primary Caregiver. When grandpa went on Hospice a document was signed indicating how is Primary Caregiver. The Hospice Nurse needs to know this information has changed.
Make sure that the Hospice is aware that Uncle is POA.
I am actually surprised that the landlord (if they are aware) that there are that many people living in a 2 bedroom apartment. There are codes for the number of people per bedroom.
earlier today, (not explaining exacrly what happened) but, grandpa got taken to the hospital (hes not injured dont worry!). hospice worker (the social worker) has been helping mom out SO muvh during this process.
hospital was trying to manipulate mom saying SHE would get aps called on HER, and in big trouble if she left grandpa there. (this is probably because of what you said! but we didnt know that would happen at the time.
mom told the hospice social worker everything the hospital was saying, and social worker defended and stuck up for her like a fever dream! hospice worker told mom to go home and she would handle EVERYthing further. and that aps cant do anything against my mom because aps already has ALL of the details from previous hospice visits at our home, so they know the truth. so as of right now, grandpa is in the hospital and staying there for a couple of days. also social worker is figuring everything out as to where he will go
please keep your fingers crossed with mom and i !!!
Yet in one of your response below you said you've actually been out of the state for a while and won't be coming back home until the end of the month and that your mom is watching your 3 cats and chihuahua.
How interesting that your mom is now watching 4 pets plus her father and her son in a crammed 2 bedroom apartment, all while working 12 hour days.
Can you explain just how that is all done?
And in another reply you say that grandpa is now in the hospital, but apparently you don't realize that once a person goes to the hospital they can no longer be under hospice care.
So why don't you quit wasting our time on this forum with your made up lies about how burdened you are with your grandpas care when you're not even there.
And if in fact you are 19 I will say...get a life.
In original post to us taylor was telling us who lived with Grandpa and her mom and she wrote child 6(m). She meant six years old male. Lea thought she meant six months and asked for explanation. She cleared it up and apologized. It is all below in her responses.
To clear up the issue of whether a hospice patient can EVER go to the hospital.
Yes. They can. Under many circumstances, but I will just leave that to googling fingers rather than go into explanations. "Google 'can Hospice patient ever go to the hospital'" for the answers as to under what circumstances. A fall with a possible fracture would be one for instance.
I think Taylor has been a great OP, forthcoming and participatory. Just my humble opinion.
I wish her well and hope she'll continue to update us in future.
I am sorry she was threatened by Hospital, but this is typically done. AS to the threat of "We are calling APS on you" correct answer is "PLEASE DO because I cannot accept him into my home at this point when it is unsafe for my own, therefore his health"; then you WALK OUT THE DOOR. Hospital-speak is rote. It is the same across our country. Sadly. I could write a book as to "what they will say" and how you should answer.
Just as your mother has to take ownership of her adult decisions, so too do you. Do not prioritize your pets as an excuse to delay getting on with your own life. Otherwise you’d be stuck doing childcare and possibly eldercare for “free,” undocumented, for years and years.
My red line would be that grandpa be out before I came back. If this means mom can’t care for the pets, you should be there only to facilitate rehoming situations for animals not likely to be allowed.
inform your Mom to listen hard to what her Brother, the POA says. What reasons he may hold - that have prevented him taking action.
Social Workers uncover these reasons aka BARRIERS all the time. I hesitate.. but some common ones are;
*Promise #1: Never to put the LO in a 'home'.
*Promise #2: To ensure the LO die in their own home (or family home)
*Fear of being judged by the wider family/society
eg Not being "A Good Son"
*Assett Protection ie must keep the LO's house to be divided up later in a will
These long held values or thoughts can be the driver behind the scenes.
If one of these is found, or a different reason, then the SW can help find solutions/compromises that sit ok with family values.
Sometimes just a short re-phrase does it. From;
Stay Home *until the end* to
Stay Home *as long as possible*.
I can’t even imagine taking on this type of responsibility at 19 years old.
What are you interested in right now? Do you have plans to go to school?
Do you have a life outside of taking care of your grandfather? This is so unfair to you.
Is there anywhere that you can go to get away from this huge responsibility? I love animals too but I don’t think that I could continue caring for my grandpa to be near my animals.
As long as you are available for your grandfather’s needs, your mom won’t be in a rush to find viable solutions.
Step away and your mother won’t have any alternative but to figure out how to get your grandfather placed where he will receive care.
Right now, your grandfather and your uncle are calling all of the shots. If your uncle has POA, your mom should tell him that she will be dropping grandpa off at his house.
The least grandpa and your uncle should do is to free up finances to pay for additional help instead of taking advantage of you.
In fact, why don’t you say to them that your services are not free, that nothing in life is free, so pay someone else to pay for grandpa’s care because you are giving them your notice as of today.
Wishing you all the best.
first off thank you for being so supportive and understanding, alrhough im not fully sure on what career path im ready for my plans consist of mainly prioritizing a job once i get back home, and saving every penny until i can afford to move out. and as of a life, recently NO i have not had a life outside of caring for him with my mom lol, i never was the type to be TOO outgoing but at the same time i didnt have an option to be even if i wanted to.
as of a week ago, i did go out of state to stay with someone until the end of this month, just because i needed a mental and physical break! its been amazing having time for myself and not having as much stress physically. (also dont worry, mom was okay with this and it actually turned out great because since i wasnt there, poa was forced to help out and he did not like that, so things started getting better with this situation!)
and to reply to your “take him to poa’s house” advice, unfortunately we have tried that. uncle raged and used the “its upstairs and i have a job and kids” excuse. (with ALL of our help, we could’ve gotten him up the stairs, my mom also has kids and a job, but you know. if it wasnt that excuse it would jave been another).
also, although i understand your thoughts, my mom has actually been trying non stop to get this entire thing situated for MONTHS. she/we have just had the worst of luck because of every other factor, if i could explain EVERYthing, i would be here allll day and all of you would have a absolute “WTF” moment hahahah. but just to kind of make words short, mom truly has been trying her best, our other family members are just awful lol.
as to additional help, we did try having someone from our complex coming to help out with grandpa, but she ended up being reallyy fishy (money wise).
but for the most part you are 100% right about poa and grandpa.
anyways, here is the update! :
(i stated this last night, but yesterday morning grandpa was taken to the hospital and was going to be kept there a couple of days.) during that time, our hospice social worker pretty much handled EVERYthing(shes an angel on earth). ive since then gotten news that the hospital, hospice team, hospital social worker, and obviously our social worker from hospice, have all met on the same page when it came to grandpa. which was its time for him to be in assisted living, and hes no longer allowed to live with us OR poa(uncle)(even though he hasnt been with uncle in the first place due to his lack of help and effort BUT thats not the point lol.) but he isnt allowed to stay with any of us anymore because of how bad his physical anf mental state have gotten. which is good news, its whats been needed for way too long now and we are so glad he’ll finally have the proper care and that we will have our lives back.
as of right now, hes going to a temp nursing facility until they can place him in a nearby permanent one!
So far, HUGE steps forward have taken place.
That, forum folks, is what GREAT COMMUNICATION can do!
I do not know what career path you will choose Taylor, but your clear sighted vision in the health & social worlds will be a gift anywhere. This experience can stay with you & your Mother. Even when it feels like you lack the power, your own actions DID cause change. You stepping back, physically leaving, led to the POA stepping in, getting hands-on experience, enough to crash through his denial. Involving non-family has opened new pathways.
I truly wish you & your family all the best.
you along with everyone else’s kind words and advice will always be remembered 😊
im so thankful he will be getting the proper care and life style hes needed for far too long now, and that my mom and i will be moving forward with our own lives for the first time in a long time!!
and for anyone wondering, grandpa will definitely be getting visited as much as possible, at least by my mom and i. especially since the facility will be so close to us! hoping he will be able to connect and find happiness through the nurses and friends he makes there:)
"(i stated this last night, but yesterday morning grandpa was taken to the hospital and was going to be kept there a couple of days.) during that time, our hospice social worker pretty much handled EVERYthing(shes an angel on earth). ive since then gotten news that the hospital, hospice team, hospital social worker, and obviously our social worker from hospice, have all met on the same page when it came to grandpa. which was its time for him to be in assisted living, and hes no longer allowed to live with us OR poa(uncle)(even though he hasnt been with uncle in the first place due to his lack of help and effort BUT thats not the point lol.) but he isnt allowed to stay with any of us anymore because of how bad his physical anf mental state have gotten. which is good news, its whats been needed for way too long now and we are so glad he’ll finally have the proper care and that we will have our lives back.
as of right now, hes going to a temp nursing facility until they can place him in a nearby permanent one!"
END of TAYLOR'S UPDATE
I am very thankful this is taken care of, and for the MARVELOUS intervention and care of the Hospice worker. It's unusual to remove a Hospice patient from care because his condition is deteriorating, in all truth, since the expected outcome of Hospice is DEATH.
So I find that confusing.
I AM very relieved that this is handled and I do believe the POA will be removed from the Uncle now by the State. Hospital Social Workers can quickly move to make the state the temporary guardian of your grandfather, and trust me, that is for the best and in the interests of his care.
I wish good luck to all, Taylor. Now Grandfather will be in care you can return to being a visiting granddaughter, your mom can return to being a loving daughter, and Uncle --well we don't much care where HE goes!
Now, no more cats and dogs. Time to move on and to get an education. Go into nursing. I did it the slow way starting as a CNA. You can still often get free education for that. I went on to LPN and then to RN in my 40s and will never regret my career in caregiving; I loved it more than I can ever say. Good luck, Taylor.
Take care.