My spouse has cared for a spouse and grandmother for the twenty years that we have been together. Two years ago, things took a turn and both grandmother and parent became bed bound. Spouse did all possible still then washing clothes, changing diapers, running errands, doctor appointment, washing heads, feeding, lawn and house upkeep, etc. Then a back injury took place because my spouse already suffers from serious pain issues and depression. Grandparent passed a year ago but that still left the parent who is much more difficult to work with on a daily basis. The parent is highly critical, will not take medicine, constantly removes oxygen, refuses to eat on most days, and refuses to wear diapers, which means we constantly wash truckloads of clothes. Not only that, this parent wears the lifeline machine out, which means we constantly get calls all times of day and night to come and open the door for ambulance because on most occasions it is that the parent has gotten out of bed and fallen. Because of this difficulty spouse wants to get a key made and leave it somewhere on the porch for the ambulance people. We are not sure that is a good idea. Hospice was coming out twice a day and that system was so abused that now they only comes out once a day for only an hour. This parent lives alone. So on weekends we are on duty to provide care and every time the button gets pushed, this is about once or twice a week. Parent has been suggested to by hospice, by hospital staff, and by family, that nursing home is best option. However, that idea is angrily refused every time. We are also caring for my aging parents (80) and it is tiresome because I have to travel 30 minutes each way to care for them. At least with them so far it is just helping with cooking and meds setup. We have small children who life also seems to be on hold because we are on call for the problem parent. Some days spouse gets so uptight and depressed when the weekend nears. Some days spouse goes on weekend and says the house looks like a hurricane has hit, diapers either off and on buck naked, telephones and meds in bed and on floor, clothes everywhere and the house smelling from the truckload of laundry. We’ve tried contacting aging council, mental professionals both at hospital and outside of hospital, social workers with all saying since parent is of sound mind they cannot make them go to nursing home. So care is pushed back to spouse and some days spouse can’t get himself to do anything. Because of my past with parent, I will not go over to do for parent unless spouse is present but I will do the cooking, shopping, and laundry although it gets tiresome. So I’m wondering do we need something in writing to protect ourselves from the parent who says she will get us in trouble for neglect? We have two small children that we have to make sure gets their homeschool work done. At times, it feels that all we do is work and no downtime. I’m sure that’s our life – all work and no play.
The first thing we noticed and found suspicious is how clean the home is now staying since APS made their visit. Hum, scratch head suspicious. SW is still going through her speech of how she hopes this works and how she wonders if we should just carry her to hospital instead or have her see a psychiatrist and how she will no longer be able to see her. Her wordings made me yet again suspicious that they are still not making an effort to help us but to help themselves.
Hospice had mom all ready to go. However, she had a bowel moment just before it was time to go and they had to change her all over again so we would not be late. The ride over was very calm, which is totally opposite of what was normal. Hum, suspicious again.
Once at the Dr. office (who is also over hospice in our area), it was quickly explained to us that we could not force mom into a nursing home (no one could) and that there is not an established history with the physician office (something along those lines). In other words, people cannot go from home to nursing home without a hospital stay in order for it to be covered by Medicare. Then it was explained that because moms vitals (oxygen, bp, temp) were so good that there was no need for hospital.
Then Dr. did this quickie test of memory and mom mostly passed with flying colors. She got all right except for year (2004) and month (March). Now we suspicious because it feels like mom has been coached and for the first time in a long time on her meds as she should. Seems someone has told her what we are trying to do.
I guess the only good part is that she made it known that we can’t tell her what to do and that she is in control of her. Then she goes on to say we trying to get her out of the way so that we can take over her possessions. Sorry mom but you don’t have assets to take and the home is falling down. Dr. says he will have a psychiatrist come over and speak to mom and us because that may be our only chance.
He comes over, does this quick test, and says he sees maybe a BIT of dementia and a few behavioral problems. Afterwards, we spend another hour trying to convince mom and with hubby explaining why he no longer wants to be caregiver. She goes on and on how she is in control of her and needs no help. How she needs to go back home and pack first and come back on her own terms. Finally, we roll over to behavioral unit. I’m sure she is going to say she never said yes.
So now, we are over at behavioral unit. It is as we are just visiting. They told us visiting hours, told us we can bring her over all the things she is demanding. Told us they are going to give her rehab and group therapy. Again, mom is answering questions and being super nice and friendly. This makes us wonder if we get a show when she is at home.
We feel she is going to do what she has to do to get back home and then the cycle will repeat. Hubby is carrying over the things she demanded. I still mentioned changing locks on the door at her home but am not sure anything is going to come from all this trouble.
I feel we are going to get punked repeatedly. After all the lies and talking about us especially her son like a dog, I would not carry her a darn thing.
The good news is that she is competent so you don't need to worry about her. Without hospice next time she goes to the ER there will not be an ambulance to take her home again so nail hubby's feet to the floor and don't let him fetch her home. If the EMTs can't get into the house they can call the police who certainly can break in for them. Sooner or later you will come to this so make it sooner. Pack a suitcase and leave if you have to, if this goes on you are getting close to that anyway and if hubby does not see your concerns for your family so be it you know where his loyalties lie. Tough, tough love. Wish I had had big girl panties 20 years ago when hubby came home from his first fling.
We are scrambling now to find out what now. She is in behavioral unit at hospital but I believe they said they would only evaluate her for 72-hours.
Do you think we can still get her in the home if the behavioral unit says she is competent? Do you think the ambulance will still transport her back home?
Hubby all upset again. Help Yall Please?
Every time mom is discharged from the hospital she can’t walk, she refuses to eat, she can’t change herself, she can’t make the toilet right next to her bed, she can’t take her meds, she refuses to wear her diapers, she can’t this and she can’t that and we, we, we. However, a few minutes ago, we went to drop off the items requested by the behavioral unit at hospital and they went to bragging on mom – how she was able to walk to dining room table, how she is using potty in room, changing herself, and taking meds on her own. Mom goes I told yall I do not need help and can do things on my own.
The nurse explained that we needed to explain this again to the psychiatrist but he never showed up while we waited a little over an hour. She goes on to explain that after rehab she will be ready for home and hospice will pick back up.
We still think changing the locks on the home will be a good idea??? Do you? Therefore, if they discharge mom to home, we can give numbers of other family members and let them check her out if they want making them take responsibility. We will stop visits - they forced it on us today saying to wait on doctor in the very room where she was sitting.
Changing the locks was mentioned when I posted the very first time but since that would be useless now we will not change anything.
No photos were taken. However, spouse says *** it they do not have to believe him and that he is exhausted. He just has to be exhausted enough to no longer visit for a while and to refuse transporting her home.
I cannot say this enough. You all are sent by God. Much love and hugs.
Now we know that some of these screams and seeing things were not just shows for us.
Then they mentioned physiatrist is saying mom requires 24/7 care (duh we know). Then they say to pick out a nursing home (done long time ago but cannot be enforced). They also say get lawyer for poa papers back to them for signature of physiatrist and two physicians who have also evaluated and willing to put it in writing of 23/7 nursing requirement.
It is our understanding that with POA mom would need to be of sound mind and willing to sign. APS says she would not need to sign. It was also mentioned they might declare her not of sound mind. Well, each call to an attorney stated that POA requires mom being of sound mind and willing to sign. Conservatorship at $1500 means mom is consenting and at $2500 mom is not consenting. POA is $150. We know from reading here that guardianship/conservatorship can get much more expensive than what is mentioned.
We also spoke with nursing home that previously saw mom. They tried to visit and see what needs to take place in their opinion and how to get her qualified. SW at BU stated they could not visit and could only do so when BU SW could be in room because mom in bad mood today.
They state they plan to discharge in a week or less – next week. They also here and there mention hospice picking back up. I guess that is if we cannot get something done.
We are thinking to visit one last time maybe next week to see if she would sign either document (all attorneys state mom would have to sign). If not, we plan to provide numbers of other family members. Right now, we agree not to pick mom up and carry her back home just like last time when the ambulance brought her back home. We have not notified family yet because they are also part of the guilt trip (do not put your mom away). They provide plenty of lip service but no action. And I don’t see how getting your love one the help they need when you can’t provide it is putting them away as if you are never going to see them again.
I know you all are as confused and tired as we are at this point. But could you please see us through a little while longer.
Does any of this make sense - especially the POA/Conservatorship?
Plan B, Guardianship/conservatorship is harder, but you have more than enough grounds for it. The legal and court fees could and should come from MILs funds ultimately. We did not have to do it for my Mom or Dad, and I was glad. not just because of the added expense, but also because the person has a chance to see the paperwork and contest it is they are able. It was interesting - I had been doing all Mom's finances with it, and until I went to sell her home, we had not needed anything else; at that point, the bank let me know I had to get her to formally resign as dad's POA and get them the incapacity letters for her, which then qualified me to act alone for everything we needed to do. Both things were relatively easy, other than emotionally. I had the blessing that Mom knew I was trustworthy and she trusted me. I do not know if there is an option for the state to take over an provide a guardian if you can't, or how good that option might be. After all you have gone through, those cost estimates seem like a lot but I would say do whatever it takes to get things settled so MIL can get care and you and hubby can begin to recover and have some peace. The wishful thinking family members, who probably do not believe or want to believe that she has hallucinations and delusions and didn't know what year it was, and who are not stepping up to DO the 24/7 care at home have no business insisting you try to do it, instead of finding a decent facility that can actually provide what she needs. Then you, and they, can visit and do what you can easily and happily do for her to make her life better, without constant stress and distress all around.
I see a light at the end of the tunnel. (I don't think it is an oncoming train, either...but I am glad you have already gotten some legal help involved (!)
Then the aid comes in and asks spouse, do you want me to wash the clothes from last week? He looked puzzled and then she said, your mom says you wash all her clothes and stuff. We gave them permission. Well, since we did not do that, she went on to give her list of demands of what she needed while she waited to be sent home next week. She also went on to explain why she does not like the nursing home idea and by then we were well other errands have to go.
We stopped at front desk to see if meeting had been schedule with SW for next week. They say no, just keep calling. Then nurse goes on to say how well she is doing, how she cannot believe mom needed hospice, and how we should give her another chance.
My questions:
(Plan A) Should we go ahead and have the power of attorney done and then try getting her to sign or talk to her first with SW to see if she will sign before paying to have it done?
(Plan B) I was also reading on here that some people go straight to probate court (I think that was the name) without a lawyer and was able to get guardianship. I wonder if that would be an option.
(Plan C) If she is not agreeing to Plan A or Plan B then when they discharge her, we will not pick her up. I just pray hubby can hold up and I do not have to fight him. I worry about Plan C because there are so many keys to her home floating around (all hospice staff has keys, her brother has keys, her grandson has keys, on and on). Someone could pick her up from the hospital and then disappear leaving her on us once again.
You two need to be out from any responsibility. Pam is right she is not going to sign anything voluntarily. From what I read here guardianship takes sometime to get. Put it in writing to the facility, Dr. Social worker, and anyone else you can think of and mail it 1st class,return receipt that you will no longer be responsible for Mom/MIL. You are unable to continue because of your husbands health and your need to work to put food on the table. Take you husband to a nice hotel for a couple of weeks and turn off your phones. They can email you if they want but they can not force you to take responsibility.
As Pam said change the locks and inform the police you will be away and request they check the house. If another family member picks her up and that's what the hospital will try let them know in writing that you do not accept responsibility. If that happens alert APS again by mail. I can almost guarentee that she will be sitting in filth again within a couple of days because thats the way she gets your attention. now she may not be able to help it either.
Warn the family that you are done and if they spring MIL it will be on their head. I realize today was mothers day which was why you went but stop visiting. You will find her stting on he bed in street clothes and a nurse nearby with a wheel chair and hubby will cave. Find a desert island somewher and get him away even if you have to drug him. See if you can get his dr to order him to take a vacation. One slip up now and MIL is yours for ever. Warn/threaten hubby with dire consequences if he wavers and be prepared to carry through, Blessings you need them. we are all right behind you ready to pass the ammunition
And don't let anyone make you feel like a worm for refusing. Done properly, these roles are onerous and time-consuming, and anyone who does agree to accept them needs to take them seriously and be fully aware of what he's letting himself in for. Too many people take them on and then either make a pig's breakfast of it or find themselves swamped by the duties.
Nothing terrible will happen to MIL as a consequence - there will be an administrative mess, but she won't be having to handle it AND NEITHER WILL YOU :|)
I am trying to convince hubby to change the locks. I am trying to convince him to power down the home (have utilities disconnected) so that if some smart person tries to bring her back home they would be forced to carry mom with them. Hubby keeps saying wait until we know mom is in the nursing home. What if someone brings mom home and they leave her outdoors after they see everything is cut off. What if hospital discharges mom, brings her back home, and decides to leave her in the front lobby this weekend because everything is cut off.
That is where we are now as of today. Lol when I say we, I mean we as in you all as well.
Hand delivering a letter does not give you any proof you need a signature. Co-operating with ( and paying) a lawyer to get POA and/or guardianship will get you control and responsibility for MIL.It also won't be the fastest way into a nursing home.
Time for tough love.
Hospice already set you up once don't let the hospital SW do the same. Mom won't sign anything that is a given (and may not be considered competent by the psychiatrist.)
i know this is hard but if hubby makes Mom his first priority over you and your son that is surely a sign of things to come. You may trully love him but is it right to suffer this kind of abuse? He can not manage Mom alone and is not well enough to take proper care of her. Who changes her Depends? cleans the floor? changes her bed? Without your involvement she will be lying in filth within 24 hours and if you let her Adult protective services will be after you and you could be arrested for neglect. leaving aside the fact that she will be crying on the phone to you and calling the numbers those oh so helpful SWs left for her if she ever need any help.
Remember all these people know each other. They go to meetings and conferences and probably have worked together in other organizations as sure as the sun comes up every day they will gang up on you.
So fight for your health, sanity and marriage, even if it means making threats and being prepared to carry them out. Plenty of others have been in similar situations and wished they had behaved differently. loving someone does not guarentee they will love you back, sad as that sounds. I don't mean to be cruel but I do have personal experience living with damaged goods. Your son does not deserve this. you may not talk in front of him but kids have the longest ears in the world.
My advice to you today if it is not too presumptios is to buy your self a new six pack of big girl panties on the way home from work and practice saying "NO" and meaning it, all day. Everytime you go to the rest room look in the mirror and mouth"We are not doing this" Do not sign anything you do not want guardianship or POA. Blessings - will be thinking about you, it is so hard.
So here comes vm from SW at hospital saying the physician forms have been signed and carried back to our attorney. Now it’s asked how we coming with power of attorney. In addition, they asked us to check with nursing home to see what needs to be done by family for placement. All that was told to us previously was get her switched over to Medicaid and the two physician forms.
Nursing home say they have not even been given the ok for a visit and have not received any paperwork from SW for placement when the discharged is said to be taking place this Friday.
Now hubby screaming he knew utilities should not have been disconnected. Now he screaming at the SW because SW is saying mom is still refusing placement and they can't make her.
I'm about to start screaming what all of them can do sick of this. Trying to call APS again but no answer. Even last time speaking to them (APS) it was as long as she is doing better nothing they could do.
I think hubby needs to carry new key to hospital and tell them all to shove it. The system sucks.
It is true unless mom is declared incompetent she is free to refuse to go to nursing home.
As I have said before she is not going to sign anything.
The hospital and before them hospice has been trying to tune her up so she can appear capable. I don't know what they are playing at but certainly have an agenda that is not good for you guys or Mom. In the mean time she is thoroughly enjoying herself. Let someone else get the POA and make the arrangements if they want her home. I can not say this often enough Leave, leave, leave. Don't reconnect the utilities she is not safe to be at home. LEAVE
At first they said poa would not work because she was incompetent and now it sounds like things have changed. He is even saying she is refusing to sign anything so why put out any more money. Nursing home going to call tomorrow with their update.
I’m listening closely to hubby and trying to take ques gauging if he is sincere. He says he is dropping at front desk the key to lock he just changed, and her cards that pay her bills. He also says we will not take any more calls after speaking with SW today.