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.
This sounds like such a chaotic and unworkable situation. I'm sure your husband is doing everything he can but caring for someone who doesn't live with you is much harder than if she lived with you. And is that an option? Moving her in with you?
Another option would be to wait until she falls again, your husband gets called by the Lifeline people, he goes over there and insists that his mom be taken to the hospital for "evaluation". Once in the ER your husband can take the nurse aside and tell her that there are domestic issues and get the ball rolling to have his mom put into a NH. This is done frequently when a person refuses to leave their home and there are issues concerning the way they are living on their own. And of course the thought of a NH is angrily rejected by the mom but with the hospital staff and a social worker who will get involved you and your husband might be able to railroad his mom into a NH. I know that sounds awful and cruel but you've been caregiving for 20 years. From you what wrote this woman sounds impossible and has burned every bridge that leads to assistance. Your lives revolve around her and I don't think it't too much to expect a little peace. In addition to that it sounds as if she isn't actually caring for herself. She can't take medicine, she's urinating all over everything, she's falling.....No one should live like that. The alternative isn't great, granted, but it's better than how she's living now.
At minimum stop enabling the mom. If she wants to live at home, she needs to pay for her care to do that. Find a care company and hire 24x7 caregivers at her expense. Once you have the in-home caregivers cancel Lifeline. The caregivers help with bathing, dressing, laundry, light housekeeping, meals and remind her to take meds.
If husband does not have POA then his hands are tied.. You have to decide when enough is enough... I agree with Moxie tell them to hire 24/7 home care, let them know you will not be available. Or you can keep going along as usual and be miserable..
See a lawyer about having her declared incompetent. As evidence - multiple falls requiring 911, records from lifeline, refusal to wear diapers. This makes a compelling argument that she is unable to care for herself. Petition for guardianship be honest about your intent to place her in NH, if she is hospice grade, she should qualify for NH. You either get what you ask for or don't, if you do not she can no longer hold negligence over your head as a judge would have deemed her self sufficient.
The option you suggested (Once in the ER your husband can take the nurse aside and tell her that there are domestic issues and get the ball rolling to have his mom put into a NH) has failed three times. The latest try with that was this year in February. Doctors, nurses, hospice/hospice nurses and doctors, and the social workers stressed needing nursing home because of the many medical issues. She would lie and say she lived with someone, angrily stress that she knew what everyone was trying to do, and refuse the nursing home. We stressed the living condition to the social workers in the hospital and the social worker with hospice. So we get the speech again, of “their hands are tied and she gets to make the decision.” So once discharged the ambulance brought her back home again.
And here we are three weeks in and the pattern is starting all over.
Burned every bridge indeed – other family members refuse to help. Mom has mistreated so many people over the years that you can’t even pay/beg them to come around and help. Then spouse feels guilty – we are all she has. My question is why? And, why still now? Nothing is done right in her eyes. He didn’t give her the right food, he didn’t put the right thing on her bed, he didn’t, and he didn’t.
All consider her mentally sane (don’t know how) except for body capabilities. I help with cooking, house cleaning, hair care, clothes washing and folding, shopping etc. Hospice says if she goes to hospital one more time they are going to discharge her from the program and never return. Oh, she also refused the behavioral unit at the hospital. They nicknamed her wild cat.
We'll try working on all suggestions. And thanks so much for listening and advice.
Call adult protective services.. Tell them hospital sent her home to care for herself.
Everything you describe sounds to me like stage 5 or early stage 6 dementia or Alzheimers. Have you written all this out and given it to her PCP? How is her memory? Does she hide stuff and then panic and not know where it is?
We have not had a report on dementia or Alzheimer’s from anyone. We know of copd, lupus, high blood pressure, and congestive heart failure. There may be others. We are continuing with the other calls. We don’t think the power of attorney will work because we have tried asking for over a year with her saying she will never sign. Social worker with hospice presented the idea again today and says she was cursed out with mom saying she can take care of herself.
Thanks all for suggestions and support. This forum has been a blessing in just knowing that we are not alone. I've been reading for a while and just decided to post.
Her house will have to be cleared and renovated so it can be sold to pay for her care. You may have to obtain guardianship in order to do this.
Look, it is emotionally difficult to reverse the roles and become the person in charge, and emotionally difficult to ignore threats, but if you have documented what is going on well enough and APS is fully aware of the situation, you are in very little danger of having a neglect report founded. And honestly, if she was capable of looking up the APS number and calling it with an accusation that they would actually come out and investigate, she would have done it several times already, no? Unless she also knows full well they would immediately realize you two have been trying to do everything possible, find HER unable to take care of herself, and then the thing she dreads most will happen. I think dying at home, alone, on the floor in a pile of soiled and stinking laundry is a lot more dreadful than going into a residential care facility, but she prefers the known, fears the unknown and wants her autonomy to continue, against all reason. What is stopping hubby from getting the attorney and doing what needs done - are there emotional or financial barriers, or both?
I have shared my story of what happened with my in-laws before, and the social worker who was involved when FIL died after MIL was in gero-psych placement had something to say that seemed harsh, but unfortunately true to a degree..."choices are for healthy people." I was ashamed of the mess they/we had let their home become, and the fact that we had not found ways to insist on them accepting help, but was also reassured that they had seen worse. BIL had backed off after MIL threatened to call the police on him, and later turned around and went back home after being unable to get in the house and no answers on the phone; a few days later, they found FIL dead of a ruptured aneurysm. At the time we did not know better about dementia and resources that might have given us a better ending than that.
Most months nothing is left financially. We even try to leave mom with some money because if we do not she goes into a rage. Spouse says today she said she is paying people to take care of her and that as long as she is paying people they have to move. Whom she is paying? It surely is not us and Medicaid/Medicare is covering hospice. So I told spouse maybe you need to let her take over her finances. He goes then she will end up with utilities being cut off on her.
We are still trying to find an affordable attorney? Did call adult protection and make a report. However, there has been no call back and we cannot reach a live person to see what happens next. Keep getting an answering machine. Honestly, the barriers are both financially and emotionally. More so for spouse because I have just grown tired. Spouse continues to struggle with feelings of guilt and worry of being condemned by people saying he did not do enough. Just like not responding to the calls about TV this week. I saw him struggle with this decision after getting home from work. I have seen so many days of spouse not being emotionally available to us over this situation.
I am glad to be back at work to get away from this some and may have to put kids back in school away from us home schooling if this continues. Spouse is to do this on the days I have to go to work.
So, with the advice of others, think to mention this as one of the issues when you speak to an elder lawyer or someone who could listen and help. If there is no-one like that in your area, am not sure what to say. Those who suggest you stop enabling the person are right, although I agree it's hard to step back when you can imagine how badly hurt the person could be if you do that.
The bottom line is that, with as worn-out as you and your spouse probably are, your young children are bearing the brunt. It's a hard thing to say to you because I know you're doing your best to "do the right thing" but please keep that in the front of your mind when you make any decisions.
My brother and I lived through this with my grandma living with us when we were young. While it did help build our character, it was not easy, either.
We asked doctor for test. Doc agrees but spouse has responsibility of getting his mom there. So now the call from the social worker with her guilt trip. Now hubby says she is talking about how he is not a good son because when her parents were alive she did it until death and that he shouldn’t complain. She also complained to him how I’m not an understanding wife because he will not bring her to our home to live with us. In addition, how her husband would me much more understanding and how this person raised him and now it is owed to her. Mom did not raise him grandma did.
After he finally hung up, Mrs. Social worker called again trying to finish what she had to say. I’m just not going to help enable anyone any more. Maybe I’ve helped spouse too much, which is why it’s also hard to let go. If someone did birth you and raise you, does it mean you own them your life? Is there a point when you can so I’m exhausted?
NO, parents have no right to eat their children alive like this. Ever. Children are not born for our sake, but for their own, and it is a gift to have the privilege to help a child acheive independence and reach adulthood. Children are meant to "pay it forward", not to have their life, their ability to be spouses and parents themselves, their career, their health and their sanity taken away from them in the process of giving respect and love to their parents. This is not do say that you don't do what you can for the ones who raised you, just that you don't try to do what can't be done and you put your own oxygen mask on first.
If you have not had a reply from APS sent them a letter with return receipt so you can prove they were notified but did not take any action. also take photographs of the worst mess you can see in the house make them as disgusting as possible and include a couple for APS. If you don't have the stomach for this the bull just dumped you.
I hear that obtaining guardianship is time consuming and expensive. don't worry about having to clear out the house Medicare will have the doors padlocked before you can say "shiver me timbers". the State will automatically take over care of the old lady and make all future decisions about her care and final placement. so you will have no say but you will be told where she is and be able to visit.
This sounds really cruel and hard but you have tried doing it the nice way and hospice who are supposed to help patients and families have simply been hostile. it does sound as though she should never have been admitted in the first place but that's not my call.
As an after thought to anyone who does need to make a key available for any reason to enter a house and you don't want to leave it under the mat. You can purchase lock boxes. they are like a huge padlock and hang on the door knob. You choose a code and leave the key inside and tell whoever needs to get in what the code is and they have acess. realtors use them a lot..
However, I do want to thank you all so much for listening and for your words of wisdom. Much appreciation!
This situation is not as much about the problem with MIL as it is the problem with husband. The horror will continue as long as he allows it in to his life -- and as long as you allow him to bring it into yours, and into your mutual childrens'.
You either have to step up and take care of yourself and the children, or continue as things are.
I wish you well as you give yourself permission to exit the squirrel cage.