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.
They may follow through and discharge her if she does go to the hospital again. Does she have a valid reason? Do they find something to treat. She is supposed to call hospice when she feels unwell. Does she call you and hubby first? If so you call hospice and request a visit from them. She is so thin she comes under the heading of failure to thrive. They can not simply discharge her because she is a nuisance and refuses to follow instructions. Many patients do that. it is not safe for her to be alone so hospice should be taking the lead in getting her placed. she maybe considered competent but she has more than adequately demonstrated she can not take care of herself. hubby is his own worst enemy and as long as he continues to enable her this is going to continue. Get after that useless SW and insist that she starts doing something about placement and keep calling every day. Also write to her and send it return receipt to the office. That may scare her. They are not going to want to be reported to the State. you can also send a copy to the hospice director and the board of directors. The board can make life h**l for the staff. The board is usually composed of prominent local people who often know nothing of what the work actually consists of and would rather spend money on new carpets for the office than paying the nurses a decent wage. But then I am bitter because nurses are always at the bottom of the food chain. Will certainly pray for you but you do have the tools to get the job done
Veronica: Hospice after this last visit to the hospital is only coming out one hour a day Mon. thru Fri. with threats of discontinuing service if mil goes to hospital one last time. Losing weight? She has no weight on her, almost skin and bones. Very little person now. I guess if APS is able to send someone we will have to ask who will take care of her finances since she refuses to give power of attorney.
Hubby took dinner over again this weekend as usual but I asked him Saturday not to bring over laundry and that we needed to come up with a way for laundry to be done where the mess is being made (no clothes dryer because of electrical problems – house needs rewiring) (now looking at portables). The aid washes the clothes, we re-wash before bringing here (tried various suggestions from here) but as soon as you put stuff in the dryer OMG – it’s like it’s never been washed/let alone washed three times. And then I'm p-oed all over again.
When he took Sunday’s dinner, he says someone had already brought her Sunday dinner but did not touch her or the dump truck load of laundry running out the area. He said he asked who brought her dinner and he says she says she has no idea. So either she is lying or had another day of overtaking medication. This isn't unusual. Hospice had to prevent a morphine overdose last year.
I know the calls will start tomorrow since the slaves didn’t get all the dirty laundry done. I will not accept calls but hubby is another story. I guess he’ll need another key and leave it somewhere for APS to get entrance. Well, keep us in prayer. I hope next report will be a good report.
I realize you are fed up with your MIL and having to go over there and clean up and you don't have to. Stop now as of today. This minute pick up the phone and tell hospice the pair of you resign as her primary caregiver. She is too weak to hold the phone so she can't take care of herself. How much help is hospice sending in?
They can provide medical transportation especially for some thing as important as a mental evaluation. Is she loosing weight? That comes under failure to thrive and a good enough reason for a hospital stay and NH. Don't go near MIL but fles your muscles as your hubby's caregiver. Let the SW know how bad her is and how much Pain medication he needs daily. If it zones him out another good reason he can't run his Mom around fetch groceries etc You have a job and kids. If hubby is unable to work you can't stop working. What happens if he runss a red light and gets stopped and drug tested?
There is a way round all this but you have to think outside the box and not wait for others to take action. If you don't have financial POA it is probably illegal for you to be handling Mom's EBT card.
Next time there is a visit to the ER take the car keys and don't let hubby pick her up.
Take care of your spouse or pack up and walk away. Only you know what is best for your family.
I hope the neurotomy worked or is starting to! To face this level of stress and difficulty while also being in chronic pain has got to be about all a body can take and then some. I'm praying for you and MIL and the strength this is going to take.
I know vstefans. I love my spouse and I know he is tired. However, I’ve started to feel like if I make the call to adult protection (which I did) and it doesn’t go easy but turn around on us that I will get the blame. I was the one that mentioned hospice and got the ball rolling with that and get to hear off and on how he wish we never got them involved, which I’ve started to feel a lot like that as well.
Doctor said he would do dementia test but we would have to do transport according to SW and hospice nurse. Spouse says mom is too weak and asks about other transport methods. This was Friday. Here comes the call from SW yesterday with her guilt trip about how good it would be for mom to be with us and how we should do transport. Well it would be a great idea if it weren’t for the fact that we’ve been there and done that and it did not go well neither time.
Spouse goes to have a procedure done tomorrow-called radiofrequency neurotomy. I pray it goes well for him so that maybe all this strong pain medication can be lowered. These people do not understand that spouse isn’t to do any heavy lifting. One wrong hit, fall, or turn then he will be in a wheelchair.
If you hire an eldercare attorney, the cost can be recouped from his mom's estate as this benefits her - so you don't need to shop for a discount attorney - any eldercare or family attorney will do. Get a competent eldercare attorney and go for guardianship. Your husband already pays her bills, so there is already some proof she needs this help which means that guardianship would probably be pretty darn easy to get. Have the doctors and social workers she has seen write up their recommendations, list out all the Lifeline calls and falls out of bed, document the condition of the house.
Pictures? Videos? Please. If that was a punishable offense then everyone and their brother with a cell phone would be in loads of shit for taking pictures and videos 24/7, of everything and everyone. My son's buddy goes around taking pics of women's asses for kicks.
As for taping conversations, that's only illegal if only ONE person knows about it. If the hubs walks in there, says 'I'M RECORDING OUR CONVERSATIONS FROM NOW ON', there's nothing illegal about it.
Next time she falls, call 911 and tell them flat out that you refuse, absolutely refuse, to take on the responsibility of her care for one more minute of one more day. Abandon her to the state and be done with it. They'll place her where she needs to be whether she wants it or not. The end. Then you can visit. Or not.
So true that hospice does not mean the patient is terminal anymore. In fact, after mom made it back this last time from hospital the nurse came to our home and really laid it out. She said moms conditions could go either way. She could be gone tomorrow (you never know) but more than likely she would be with us a very long time because her conditions are manageable. All it would take is taking medications as prescribed and eating more.
I understand what everyone is saying. Appreciation for the outpour.
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.
However, I do want to thank you all so much for listening and for your words of wisdom. Much appreciation!
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..