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.
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.
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.
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.
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.
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.
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 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.
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.
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
I read this hoping you are on the verge of getting what needs to happen to happen...hope you can let us know if/when it does! I find myself thinking of you often and praying.
Saturday spouse ask to take my car because it has more room to haul all the clothes. He was taking them to the laundry mat. At first I say why. Then I was like sure I’ll take off today and we don’t need to go to store so just take this protection for the back seat area (SUV). I was thinking everything was ok but instead three hours later – he texted if you want your vehicle I’ll bring it back since you didn’t want me to use it and of course I got smart saying if something had changed I would have texted or called.
Fast forward to today. Kids and I were going shopping for today’s and this week’s dinner. Instead of making his morning round to mom he decided he was going with us. Everything was good until the kids spotted a fair. We said we‘d go later. I quickly got dinner ready so he could carry something over. Son got impatient and asked what time do we leave. He goes mom can’t be feed early because she’ll be hungry during the night. He finally leaves around three. Thirty minutes later son got impatient again and sent text to hurry up. He makes it back at four and comes in yelling at son. I can’t just go in and treat grandmother like a dog. I had to reheat her food and do this and that and on and on at son.
Then I was like hold on everybody trying to make peace. Then he turns on me. I said it’s funny how you can’t yell at who needs to be yelled at. He immediately thinks I’m talking about mom. I told him I was not talking about mom. He goes who, who else do I talk to? I was talking about the SW. He was not hearing it and so I went I guess she was good to you this weekend because I’m telling you I was not and am not talking about mom.
We go on to fair. I’m trying to make conversation. He refused to talk to me and only spoke to kids. We try to make it to the ticket booth but by then there is thunder and drizzle of rain. They refused us tickets and say this was last day. Now son is disappointed and stated so. I cover his mouth with hand and promised we’ll find something next weekend again trying to keep the peace. I get yelled at to shut up and let son voice his opinion.
The kids and I go on to eat, watch movies, and get on our boxing bag. He goes on to go through a bottle of wine, a pack of beer, and real cigarettes still only talking to the kids. That is until he hears gunfire outside and decided to come and ask me did I hear his idiot older son from first marriage shooting his gun out the front door and to keep kids inside.
Of course, if I jump up to take the kids by myself that would be a problem. When I try to keep the kids happy and out of this insane mess, even of our unit, then I’m trying to turn the kids against him.
I know I don’t always do what’s right or say what’s right but he** I try. Hence the reason I don’t know if I should continue with APS or anyone else for that matter for fear of being hit with the blame if things go wrong. Even if it goes right, I’ll get the blame when the guilt sets in.
Good night everyone, I’m going to get rest so kids and I can homeschool before work tomorrow. Have blessed night or day lol. I don’t like being on this emotional roller coaster and not just with this care giving but with our relationship in general.
Husband's issues are not just his chronic pain or Mom. he is a very sick mentally ill puppy. Find yourself a very good therapist and I mean the $100 + an hour sort and if you are not comfortable with the first one move on. Remember you are the customer, you are paying them. But the right therapy will be a very good investment. You may not like some of the advice but it will help you to see things clearly and help you make the right decisions going forward. Pray about it meditate whatever helps you. Ask the Dr for some antianxiety meds at least just to help you through this rough patch. do not protect your husband from the kids. They have rights too but also be very careful not to use them as weapons. Ignore the silent treatment. it is just a ploy to get your attention. For example prepare a meal,set the table and tell him when it is ready. he may not come to the table or say he hates it anything a spoiled child would do. Tell him you will put it in the fridge in case he's hungry later, or tell him there is a TV dinner in the fridge and he is welcome to heat it up but don't do it. Converse with the kids during meals and encourage them to tell their dad about their day's activiies, do not tolerate disrespect.
This is crisis time so if he gets into the alcohol take the kids out to a movie or to something they enjoy. One late night does not matter they don't have to get up for school and you probably aren't sleeping anyway. Leave them easy school work before you leave for work, maybe something like collecting leaves or twigs for a nature project. You are probably passionate about home schooling but maybe this is the time to consider enrolling them in public school at least for the duration of this crisis. I hope this helps I have lived this nightmare and so can you. Blessings
Oh Veronica91, I am sure most of what we are going through is why first marriage failed and if it were not for the fact that I truly love this dude and the children I would be gone. Heck I have done so several times with daughter always blaming me. Mom, all you have to do is keep quiet, do more, and not talk back. Son is a different story and thinks dad is an *** but still loves him.
Yes, my puppy is mentally ill hence the reason two sick puppies could not be in this household because then there would be three. I know it and he knows it. He often says he must be insane. I think the child is spoiled and rotten as well with capability to grow. However, it is on him now. The kids are now 14 and 11 and are a bit more capable of understanding. Now, I try to do more with just us.
It is funny because when we got engaged 15 years ago yesterday many came forth saying he was good as gold but had horrible mood swings. This still holds true. Some days we can be doing something that should be fun and non-stressful. However, we see the switch come on. We try to make things light by saying your devil horns are starting to show.
Now update on mil. Aps called today and said they are going to make a strong effort to get mom in nursing home. However, we still have to do doctor transport and stress nursing home placement and that we can no longer provide care. During conversation, it was also said that some psychiatrist had said nursing home was not needed but after their evaluation, it was clear that it is needed. They are also requesting assistance from hospice to get her ready for transport. Mom gave APS the royal treatment.
I plan to spend the weekend reading through this post and others so hopefully we do not say the wrong thing and defeat the purpose. Now if this doctor comes back with a different opinion then hopefully APS will get on them and hospice this time.