As a part of my Caregiving over all these years (24) I have had to deal with the in-laws from H**l. They refuse to accept any information from me; they believe what they want. They have interfered in his care and ignored direct instructions designed to keep him safe. When I had the Poilce take him to the hospital in January because of the altercation, they said it wasn’t that bad. A little push never hurt anyone. I am on braces and crutches. I had just gotten to my feet from my lift chair and didn’t have the crutches in place when he shoved me back into the chair and had his fist an inch from my nose. One member of his family provided cigarettes to him during the first 2 days he was in the hospital—he was caught smoking in the day room. According to them I am responsible for (cause of) all his health issues, “over medication,” etc. They are absolutely vile in their opinion of me/my care because he’s in the NH.
Yesterday he was seen by a Cardiologist because of his CHF and Aortic Stenosis—originally Dxd in the hospital in Jan. and attended by the NH Dr. The Aortic Stenosis is classed Critical (worst). It is the cause of the CHF. Treatment of it would be replacement of the Aortic Valve—4-5 hours of deep anesthesia and use of the heart/lung machine. DH is solidly in Stage 6 now. The Dr. told me, after I said “NO.” ,that he agreed. He further indicated he would have a very hard time trying to find a Cardio-Thoracic Surgeon who would even consider it. IF DH were a totally healthy, active 69 year old the surgery would be fine and the CHF would eventually heal. But, DH’s condition is not that. The Dr. actually said “It would be immoral to put him through that.” He will receive Palliative care. Basic prognosis is that he will weaken and then die. We will not, likely, see a crisis. Most pass in their sleep or while resting in a chair. The Dr. estimates we have about a year. We lost DH’s Mother to vascular issues, and a sister as well. Several have BP issues. So this is not a new issue for the family,. DH didn’t understand, nor remember what the Cardio Dr. told him about his condition (3 separate times). But he told our Daughter tonight, that when his sister comes from New Jersey (In 2 weeks) they are going to get a second opinion. I’m not surprised to hear this, just didn’t expect it so soon., It’s not going to happen. Anybody have some really concise words to deal with them. I’m fresh out.
So sorry you are still having to deal with his family. I am grateful I have never had to deal with this kind of intrusion. And that is what it is! Have you told them flat out that you are his wife and only you have the authority to make the decisions? Have you made it clear to the staff that no one except for you is allowed to take your husband off grounds? If not, that would be the first thing I did. Make sure you tell the right people and have it in writing as well.
As a sister I can in a way understand their want for a second opinion. I would want to help my brother in any way I possibly could! But, my brother doesn't have severe Alzheimer’s either. Clearly they STILL do not understand the disease. This isn't a pill for pneumonia you are talking about, it is a serious and invasive surgery. Perhaps the doctor who spoke with you could also talk to them? Maybe he could help them understand why sometimes it is cruel to treat our loved ones.
Wishing you some peace from the “seagulls” ((hugs))
Dear Carosi, you have my sympathy. All I can suggest from my own experience is to be vigilant, fight like a bulldog to protect him, enlist whatever help you can get from the doctor and nursing staff, and try to put up a protective barrier between you and them. I image a plastic bubble that I'm inside, safe from their attacks. Or a windshield, similar to the ones they use on the Canadian Prairies. Words were useless. Silence was better, such as, "I have nothing to say to you." Keeping you in my prayers.
See if Harley Davidson makes power chairs, get an army surplus flame thrower, go over there and talk some sense into them. It's the only way to be sure.
If that doesn't work for you, fill a pail full of water, splash it on them, and watch them melt.
I think I would have to wait for them to come in the door....Say...welcome...take charge...I will be back in a couple of weeks and if you want to I will take over then. Otherwise...carry on...Joking of course...but, I might make them think I might do such a thing.
I would suggest that you ask the doc if they can call & talk to him to answer their questions, etc. when they hassle you again. You might have to sign a permission form - the doc will have one. Then tell them to call the doc for any info. From what you write, it sounds like they would accuse you of being in cahoots w/the doc. Anything else I can think of involves a baseball bat--and you've likely thought of that many times.
Bettyhere's idea is good, to have them talk with the doctor directly. But first ask the doctor if that is OK. The doctor might not have time or allowing them to the doctor might allow them to interfere with your husband's care.
You might want to not allow them to visit your husband unattended. They might get him to sign a medical POA granting them control over his medical issue. Or even a durable POA so they can take over his legal and financial affairs.
If they want to talk to another doctor on their own you can't stop them. But you can stop them from taking any of his medical information or taking him to another doctor. I suspect another doctor would refuse to give an opinion without examining your husband, and even then would refuse to talk to them about his condition without a medical POA or written permission. There is a danger that if they see he has dementia and believe that he came willingly to an exam with them that a doctor would discuss his condition with them.
The possible operation sounds like a bad idea and would only worsen his dementia.
As to words. I don't know them but would recommend a simple "You may not take him to another doctor." Should suffice.
You also need to give clear instructions to the NH about not allowing anyone other than you (or your daughter or others you trust) to take him out. Or even restrict unescorted visits. I know someone who discovered that her husbands assisted living center did not follow these instructions and her stepchildren secretly had her husband sign all sorts of documents while taking him out to lunch.
Thank you, all. I'm taking your ideas under consideration. As to letting/having them talk to the Dr. I've tried that--no interest. I have Legal Guardianship. The NH knows this. I will verify the situation woith them. He can't write his name, so signing becomes a problem. I'll be verifying the security matters.
I guess since I am having a sort of hard week too, my answer might seem harsh. Since his family seem to dismiss youboutnof hand all the time and go against your orders as well as his doctors, how about you go on vacation for a couple of months and let theses darlings come deal with the issues you face every f^%^*+= d*%%} day....let them get tha shove and fist in the face.
Apart from that, don't tell these idiots anything about this development. It will just be more trouble.
I think that saying nothing is sometimes the best way to go. It seems they are looking for a fight and if you say nothing then there is noone to fight with.
Re POA and representation agreements....in Canada.....when hubby gets too bad the doctor can write a letter or sign a form that says from this date he is no longer of sound mind...competent to understand and sign any legal documents. Then if something happens you have that letter to take into court to put things back as they should be. Just spend afew dollars on lawyer here to make sure my i's are dotted and t's crossed. But then there is always a loop hole.
How necessary is it that the in-laws find out anything at all about the theoretical-but-rejected surgery and his current diagnosis and choice for palliative care? Who will tell them about these things? How about if no one tells them anything, or just tell them something false?
Oh carosi, with all that you have been through & now this. I agree with emily. It should be on a need to know basis & they don't need to know! But if they persist I agree with Judith & MiMi – let them take care of him & then they would see how it really is (just kidding, because I know that they would blame you for making him that way). Praying for you.
DH already told one sister his understanding of what's wrong (not quite accurate) and no surgery. That's how he came to tell me that when she comes in 2 weeks, she's taking him to another Dr for a 2nd opinion. I'm volunteering no information, but answers to questions will be be short truths. No details. That much is settled in my mind. So far, none of them have called me.
They care for him, but only in ways that make them feel better, not with his best interests at heart.
Did you ask her who was going to pay for a 2nd opinion?? Are, did you tell her she would have to pay because your insurance wouldn't pay for such a thing since he has all these tests to confirm his condtion...Just throwing out stuff to try and help you and hope some of it sticks to the wall.
carosi, I have worked as a cardiac nurse with open heart patients and agree with the doctor that the surgery would be immoral. Open heart surgery is no walk in the park even when a patient is in good health. If my husband were in the same condition there is no way that I would consent to surgery and put him through all that is involved with surgery. Be strong and put your husband's best interests in first place. You are his wife and you are speaking for him. Don't let them bully you. My husband has 5 children and fortunately they have been supportive, but they also haven't put themselves out much with his care.
Carosi, please do not take offense, I am only asking because I do not know…. Could it be that the sister is not looking to get a second opinion at all and that this is just a figment of your DH's imagination? I don't honestly know what stage your husband is in, but can he recall what happened at the doctors? or even his conversation with his sister?
I agree with not telling them anything! The less they know the less they can meddle. <mutters under my breath> damn seagulls!
Nikki brings up a good ? did dh make this up but if not and sister didnsaynsh,e isntakingnhim for a second opinion ( bynwhatnright can she do this?) I would make it clear,mSHE PAYS FOR IT!
I'm going to answer here. First of all if THEY want a second opinion, they need to pay for it. Payment should not come out of his insurance because you are the one who is responsible for his care and you don't want a second opinion. You already know what is going on. Second, it is time to call in hospice. If you have agreed not to treat, then that is reason enough for hospice to come in. They should come in based on his heart condition which is terminal and not treatable, and not his dementia. And third I doubt if any doctor would do a second opinion when hospice is on board.
Your husband has multiple terminal diseases and requires skilled nursing 24/7 which is the major reason he is in a nursing home. It is too bad that his family is weird, but they are who they are. Once hospice is on board, you can ask the hospice social workers and nurses to do some counseling with his family. He is NOT a candidate for surgery. Frankly it is unlikely he would survive the surgery, and even more unlikely that he would return with as much quality of life as he currently has. And someone, NOT YOU, needs to explain that to them.
Maybe if a professional gets involved they will wake up to reality. But I'm not holding out much hope for that. I've been walking this walk with you for 3 years and they truly are the in-laws from HELL.
You also have the right to refuse them access to your husband in the nursing home. They could be put on a May Not Visit list. And they certainly have to be put on a Can NOT Give Orders list.
With VaD the decline is sporadic and various areas are affected in varying degrees, so while in Stage 6, DH is missing a lot in some areas and yet retains some things to a better degree in others. He didn't get the actual Dx the Dr. told him 3 times, but he did get that there's something wrong with his heart (he calls it a hole). He got that the Dr. said, no surgery. He talked to his sister that afternoon after the apointment. I am sure the 2nd opinion idea came from her.
When I saw him today, we talked, and I told him we already have the 2nd opinion--Dr.s did the DX when he was in the hospital, NH Dr. treating him, and now the Cardiologist is 2nd. opinion after the original Drs. May be a fiblet, but it covers the issue for him.
Since I am his Legal Guardian, and they aren't on his information release list (HIPAA) they'll have to ask me if they want to know. I'm volunteering nothing. I am going to be in touch with the NH this next week, to update and clarify this situation with them and also ask that Hospice be brought aboard as soon as he qualifies. The Cardiologist indicated that right now the Dementia would be the primary condition he'd fall under. That will change.
As to having them/letting them talk to the DR.--I've offered that several times over the years---not interested because they "know all about. .."
I agree with carosi...Your doctor will sign for hospice...and they will come in for an evaluation first and that can take three months or more. My dh is now under hospice evaluation. He also has a couple of terminal illiness...Ad, severe heart condition, seizures and COPD. They could only qualify my dh for this evaulation under the guidelines of his heart condition. It sound like that is how they would do your dh...under the heart condition. They (hospice) told me to use the guidelines of AD my dh would have to be bed ridden and he is still very mobile.
Regarding my dh...his AD is of a much greater conceren then his heart condition at this time. But I think you would fit right into the heart evaluation for hospice.
Carosi, as long as you have POA (and I hope a DNR for him), I would not give those people the time of day. You are better than that and owe them absolutely nothing!!! Their being vile to you when you have to take care of everything is just not acceptable. I have in-laws that are interested to the extent of an occasional phone call. As long as I know I am doing the very best that I can, I really don't give a crap what anyone else thinks! I have better things to do with my energy.