My problems with my husband are that he is very noncooperative. Taking him to Dr. appts. is excruciating. When it's time to get in the car to go, he refuses. I start the process at least 15-20 minutes ahead of when I should leave the house. If he eventually consents and gets in the car I am exhausted. When I get him to Dr. office I am so frazzled I have a very hard time communicating with the Dr. Yes, I've tried all the calming techniques for myself, but when you are in the middle of this --it goes out the window. Sometimes he refuses completely.
I took him to a dementia specialist 50 miles away and he refused to get an MRI so the doctor will no longer see him. This is what you get for "expertise" in dementia. He refuses to take vitamins/minerals that were prescribed by a different doctor.
I have general and medical POAs, but he will not allow me to use them to take care of financial matters. He listens to my phone calls and gets in the middle of the conversations --I cannot conduct business this way.
What good does guardianship do if he interferes constantly? The poor man has dementia, but he is a torture to deal with.
I would rather get a divorce, but I am all he has! Someone will have to look out for him.
I can not afford an assisted living arrangement. I have a caregiver come to the house 2 days a week so I can work at least part-time; it's necessary.
For one of the horror stories I would like for you to search for "April Parks, Las Vegas."
That is the main reason I filed for my Dw's guardianship. To protect her from the Snidley Whiplashes in the world. Not to force any treatment on her. I am not Dudley Doright protecting the maiden Nell, rather I feel I am the protective husband that will open a can of whupass on any one trying to cause her or us harm in any way.
Just for some clarification, DW is non-verbal/communicative and I understand your position and concern. I truly wish you the very best in your attempts at caring. God Bless you Angel
I will and can approve any treatment " I" feel would be beneficial to her and "I" will reject treatments that are more for the ego of the prescribing entity. I will not force her to receive to do anything she may object to.
She may be incompetent but she still has rights in my opinion and I will respect and protect those rights. I think I know her pretty well after 52 years.
I will not try to keep her alive for my benefit but I will do my damnest to keep her comfortable and pain free as long as possilbe.
If anyone wants to contest me and my decisions , they will have to haul me and her attorney into court and prove that Attn. and I are both incompetent.
respectful as I can be because they are in control and I have to believe that they know what they are doing.
My husband is a human being. Because he has dementia he does not know what he needs. He can not comprehend that I am doing everything in my power to protect as well as take care of him. He curses at me when he is frightened; it can be frightening for me. He does not want to be cooperative because he is frightened. I am trying as hard as I can, but I am afraid I will wear out physically and emotionally I'm having a hard time.
Believe me, I have only taken him to doctors to get some answers --which I can tell, you know doesn't produce much --hasn't in this case. I have tried very hard to limit the drug pushing.
The only doctor that was helpful was a psychiatrist that does not take insurance because her treatments are based on uncovering real underlying biological problems (insurance companies don't cover real testing for healing.) After testing for insufficiencies, gut problems and others she prescribed the vitamins/minerals. Sleep vastly improved as well as gut issues. It was a stressful struggle to get him to take them so I finally gave up insisting and repeating why he was to take them She eventually detected the problem of dementia.
Had him evaluated by neurologists. He was initially diagnoses with FTD from Neuropsychologist and referred to a Neurologist (dementia specialist) That one suspected Lewybody dementia. That's when he refused the MRI. It took a 6 month period to GET the appts with them.
I feel as if I'm at my wits' end. It's been 9 years of this.
I guess I was wondering if anyone out there has done something I haven't tried. Found an attorney that is on your side and giving real options for you instead of putting the sick one's interests ahead of the caregiver. I'm not looking to totally abandon him. I just need real space from it.
I am also facing the challenge of trying to protect my mother from herself but her Dr does not seem to understand just how much help she needs. She is no longer able to make good decisions. She needs to be protected from herself.
I do know lawyers work for the one who hires them.
What I have come to realize that Drs listen to the one with the *broken brain*, and I wonder are the Drs REALY helping our LOs or are they causing more damage because they don't listen to the care takers. I have been very frustrated with the system. A system that is broken.
Just my 2 cents!
As you say guardianship doesn't do any good if he won't listen. And with guardianship you need one or two doctors saying he is incompetent. And its not cheap. The only thing it will help you with is getting him in LTC against his will. And even then, a resident cannot be forced to do anything they don't want to do. Dementia or not.
Does he have to go to the doctors. I cut back on visits for Mom once her test results showed normal. One doctor was recommended after a hospital visit. He saw no problem but she went back every six months for a while. When there were no changes I asked for a year. Same with the other, once her numbers were normal, we went to a year with testing in between.
Are the vitamins and minerals really that important? Mom had a neurologist. There was no doubt she had Dementia. An MRI is a tool. Just proof that something is going on. But if its a closed MRI, a lot of people are cloausterphobic and cannot be in one. There are open ones now.
How old is your husband. Is it worth your health to try and force him to do anything. If by law our hospitals and facilities can't force an individual I don't think a wife should be expected to. You may just have to let him do his thing.
The doctors will have a hard row to hoe if they do not listen to the guardian. The guardian is speaking for the patient. Since the patient has been declared incompetent by the courts. In my case I make the final decision and if they don't like it they can kiss where the sun does not shine on normal people.
I have pulled rank on some nurses and stoped some normal procedures. I stopped them from the tuberculosis skin test because DW had tuberculosis and was under treatment for two year so the skin test would have been positive and the rest of procedure would have been nothing but a big scare for them and a waste of time. Yes things were done without my knowledge and consent. As I mentioned the cardiologist ordered reduced sodium intake and the generalist (see hospitalist) for some reason order a .05% sodium chloride IV. that means the hospitalist disregarded the cardiologist and ignored me and order something that sent he BP thru the roof along with all of them ignoring me when I complained about the automatic/portable BP machine causing excessive pain and ask them to use a manual. one person did and no one else. When he BP hit 273 the cuff was ripped from her arm and hidden from me.
I have been questioned by some sother physicians and staff member until I show them my order and authorization for guardianship.
If the guardian does not speak for the patient/ward---WHO WILL? Some one with a degree and an ego? Some one that thinks his/her labs hold all of the answers?
Would they be held accountable in court?? I don't know. I do know that if I refuse a treatment that medical person is going to have his/her hands full trying to discredit me.
If the state law grants you authority for the person and the estate by your states laws that med pers better be listening to us.
Guardianship is expensive. It would allow you to have him held in a psychiatric hospital for possible med adjustment BUT again, he can refuse it.
The one thing you can count on is change. His illness will progress and sometimes the behavior is better. Sometimes it is worse.
Recently I read that Alzheimer meds not only don’t work (which has been known for awhile) but that it actually can cause problems. So do consider all the meds he is presently taking as possibly part of the problem.
Its comendable that you want to stay and try to help him but don’t allow yourself to be abused. It won’t help either of you.
When he shows himself to be a danger to himself or others, you can take action with the psych evaluation. I don’t think you have to be s guardian to do that. Speak to whichever doctor seems to be willing to help or call 911.
Keep in touch and let us know how things are going.
You might need to at least call adult protective services and visit with them.
You are so right about the doctors thinking they own the patient. That their word exceeds Gods will. That they re the only ones that can make a decision. And any one that rejects their decisions is non compliant and will be or could be rejected.
That may be a little more difficult with a guardianship.
When a person is put into guardianship they generally become a ward of the state and answers must be provided.
I had to stop a nurse from giving DW a tuberculosis shin test because she had renal tuberculosis back in the 70's. It would show up positive and then they would try this isolation thing.
Not one of those idiots ever ask me about her medical history.
The hospitalist overrode the cardiologist orders of sodium free heart healthy diet and ordered a sodium IV. Her blood pressure went bananas. I saw it as high as 273. At that point the cuff was litteraly rip off of her arm and then the started administering a liquid med to lower it.
My opinion, they nearly killed her. Then they had the gonads to try to get me to sign a blank form for transport. NFW.
I understand the fear your DH has. It can be real to them. It is real to them.
I understand the fatigue you are facing. I am near that point as well.
I have my times of exhaustion as well. Many times I will breakdown and cry because of what is happening. There is nothing we can do, except come here and talk with other who know and understand.
All the doctors have to do is send our LO's some other place or sign the death certificate.
Not a one of them ever sits and spoon feed a person, baths them,or changes soiled diaper. Or any thing else we do.
These are reasons I believe so much in a good solid guardianship.
There is an old saying "I would rather be judged by my peers why I did something than to explain to God why I did not."
Keep up the good fight. You are not alone.
I am a little confused by what you say about guardianship. If I have guardianship awarded by the courts, does that mean that healthcare providers i.e. doctors, nurses HAVE to DO as I SAY? They can not question me? They might throw us out of their offices, but they can't override what I say he can/should have done or not? You describe procedures that were done to your wife without your consent.