I am a relative that is involved in giving advice/help to my cousin for his ailing mother. I work in healthcare, but he can't come to terms with what I am telling him is going on. He is in complete denial about her cognitive decline. Along with myself and my sister, we've tried countless times to convince him to get adequate care. She has been in and out of LTC rehab facilities after falls and a stroke but he always brings her back home. He has cared for her nonstop in the home for over 4 years since her first fall other than her stays at the facility. The home is not equipped to handle my ailing aunt, nor is my cousin. WE believe this has been to her detriment. She has symptoms consistent with dementia/Alz. as well as depression, but he refuses to recognize her behaviors. It has escalated to paranoia/delusions and she thinks she is being poisoned or poisoning others. She can't get to her second floor where her bath/shower are, so she has had neither one since being in a facility last June. My cousin does clean her up at the sink in the kitchen though. She has crying spells. She thinks her husband that died over 25 yrs ago just died. She is telling delusional and untrue stories related to him. She is barely ambulatory. She will go on and on about the same subject for hours and demand an answer. Once she is finally satisfied with an answer, she resumes the same line of questioning on the same subject hours later or the next day. She has started rummaging behavior. She has retreated from family even though she has very little. She has refused to see us for months. It would be helpful to assess and see what state of mind she is during a visit. The latest thing to happen, she has said she tried to commit suicide even though there is no way this could have happened. Her physician abruptly stopped her opiate that she takes due to pain from her previous injuries. I realize that a narcotic in the elderly can present a whole other set of problems, but to abruptly stop seems negligent. With the discontinuation of the opiate, came the start of Prozac all in the same weekend. So what I am wondering...is this a psychosis related to a possible dementia diagnosis, narcotic withdrawal, Prozac side effect, or a combination of all of the above? As my question states, she is now in the hospital after the suicide threat and been placed in the psychiatric unit for an undisclosed period of time. With her refusal to see the psychiatrist, how do they expect her to have improvement or feel better, if she continues to refuse treatment? She can't even get a proper diagnosis if the psychiatrist isn't able to perform his job and evaluate her. Any advice would be much appreciated. Thank you in advance.
I will clarify some of my above story...some of the signs/symptoms I have listed came after the stroke back in June of 2015. The paranoia/delusions, suicidal ideations, rummaging, major crying episodes are some of the newest signs. She had an eye surgery a month ago and he keeps wanting to attribute ALL signs/symptoms of cognitive decline to that and this just isn't accurate. My sister and I have witnessed memory loss, anxiety, aggression, some isolation, minor depression as far back summer of 2015. I watched my aunt's mother(my grandmother) go through so many of these same things with her dementia, so it does run in our family. I will add that I already suggested that she have her urine tested for UTI and thankfully he complied. This was done twice and it came back negative. From what I understand, all lab work came back okay too. She had a CT scan a few days ago, but he doesn't have the mindset to know to ask for the results. I have asked about med. changes upon admission as well and he has no idea and again, hasn't asked. He has lived a very sheltered life, never had a job, never owned a computer or been on the internet, and has always been taken care of by her, so he really has no idea from a medical standpoint how to appropriately handle someone's care. He means well, does the best he can, and cares for her dearly, but he lacks the information and skill to properly communicate with physicians. Again, this is very frustrating for someone like myself who is educated and experienced in the field.
As for the Prozac, I am hopeful this will ease the depression, but I am also wondering if they will start her on an anti-psychotic or even a sedative to calm her agitation/anxiety. This is where I am questioning things though. How can the md start administering new meds if he can't even get permission to evaluate and get a true diagnosis? I know about a patients' right to refuse treatment, but this is to her detriment if she continues to turn the md away. She also turned PT and OT away. So this is why I am wondering how long a psychiatric facility has a medical and/or legal obligation to keep her if she is refusing certain aspects of treatment?
A few more things...I 100% agree with you mentioning him needing a break!! He hasn't slept in a bed since last summer and stays on a couch near by. He rarely leaves home except to pick up supplies/food for her, take her to occasional doctor appts., and go to a visit to his doctor. I have pleaded with him to get care in the home if just on a part-time basis. He and my aunt both refuse to let that happen. I have suggested it would be safer in a LTC facility, but she begs him not to put her there. I believe there comes a point that your own health and safety as well as hers has to be taken into consideration and the right thing be done. Also, you have mentioned observing him, but she hasn't let visitors to the home in quite some time and he will would never go against her wishes. As far as now while she is in the hospital, we are trying to visit him, but he is spending 11 am until 7 pm(entire visiting hours) by her side. Unfortunately, this leaves little time to spend seeing or helping our cousin get through this difficult time. I am sure you can see why I am at such a loss on what else we can do as the only family they have.
Thank you so much for your response!
Your cousin should not be visiting everyday-the staff may have told him this.
If you want to help, offer him a place to stay with you, if even temporarily. The poor woman is probably panicked about what will happen to her son, only she knows what that is about. You do not give ages, or what diagnosis the son may have.
Sometimes, doing nothing unless asked is best for everyone.
Your genuine concern is admirable. It just seems like you are trying too hard.
Of course our hope is that her behaviors or signs/symptoms will be apparent. If she has been exhibiting these on a consistent basis, I don't know how they won't be. Also, I was referring to wishing for a visit and assessing her when she was in the home still, not at the hospital. We merely wanted to spend time with her to see if things were like we've been told. Anyway, I guess we just have unanswered questions about the care a geriatric patient receives while in a psychiatric unit amongst other things. How long they can or will keep someone that is refusing treatment as I stated in a previous post. I worry about how scared she is and what she is feeling when lucid.
I would be fine with doing nothing or taking a step back, but because of my experience and my love for my family, my advice is always solicited. It is unfortunate though that when in denial, that advice one wants, is the truth they don't always want to hear. Forgive me if I seem to be trying too hard to get answers for the little family that we have, but I have been in the throws of this for years. With having a cousin unable to process just how dire this situation is, we don't know if we will get the entire story. Hence, our desire to get some answers in other ways on what we can expect or plan for. Our hope is for our sweet aunt to accept treatment and get a definitive diagnosis. To me, that is the key for things to fall into place and have some quality of life for her remaining time.
Who is seeking your advice? Your cousin? He's never held a job, at age 50? That's an interesting situation. What will happen to him when his mom dies? It sounds as though she will need long term care at some point; are they "generationally wealthy", i.e., millions of dollars in brokerage accounts?
If not, her assets are going to be used for NH care and then she'll be funded by Medicaid, who will put a lien on her property. Has a Special Needs trust been set up for the son? If he hasn't paid into SS, I don't believe he'll be eligible for that or for Medicare.
If there's anyone you should be talking to (and they won't be able to GIVE you any information, but you can give it) it's the discharge planners at the facility she's in right now. You should alert them to the level of "care" that she'd be going back to if they discharge her to home.
Step back support HER med pros let them do their jobs. This is what is going to help your cousin and all others involved the most!
They both have private insurance. Medicare is her secondary of course. When she has gone into skilled nursing for rehab after the falls, stroke, etc, they pay out of pocket for services not covered. The facility that she stays in doesn't even accept Medicaid. I don't know the particulars, but they may even have long-term care insurance. My assumption is that they have all this decided anyway when estate planning was done.
I am all too familiar with HIPAA laws, but what you said about talking to someone in the facility we have been discussing that already. We thought possibly speaking to the social worker. We fear that the entire story has not been told by my cousin in regards to how much she has actually declined over this time. He does this to protect her, keep her out of a LTC facility, and respect her wishes, but we continue to believe this has only been to her detriment. Every time she was discharged from skilled nursing in the past, my aunt and cousin told them nursing care would be provided in the home, which was never the truth. Once, one of our family members did alert skilled nursing to the level of care or lack there of at home and that the home was not set up properly to handle her needs, but she was discharged anyway. I will add that her cognitive function wasn't affected at that time and her mind still sharp. The DON at the facility said it was "safe enough" for her to go home. Needless to say, we were appalled, but our hands were tied so to speak.
For the record, my family believes this is a blessing that she ended up in a psychiatric unit. That isn't what I am trying to debate here. Nor am I questioning the staff at this particular facility. I support their efforts in ultimately getting her diagnosis and proper medication management. I am not her physician, and I am not trying to diagnose her. That is not my place. As I stated above, I don't understand from a legal standpoint how long they are obligated to keep her if she continues to refuse treatment. Most of our society is aware that there are not enough facilities to treat the mentally ill, and there are people waiting in the wings to get their opportunity to get the help they so desperately need. I am worried her refusal will get her booted out before ever getting treatment. If this happened to be a 72 hr hold, I assume this would be the case.
There are no dangers in the house as far as cleanliness as they have a service that has cleaned their house for 20 plus years, so no issues there. The home issues are his inability to care for his ailing mother, her inability to maneuver around safely and we worry about fall risks, not being on a level of the house to bath which hasn't happened since June of 2015(clean up done at the sink supposedly on a regular basis), her smoking which presents a fire hazard in her state of mind, he must leave at times when 24hr care is needed, those are the things I can think of off the top of my head. We have discussed Adult Protective Services as an option. This is just so tough because we don't want to cause extra problems for them. If anyone has experience with APS, please feel free to let me know.
I mentioned in my response back to Babalou that the financial affairs are not an issue in this situation.
A psychiatric hospital is certainly the best place for her at the moment and hopefully the staff is sufficiently experienced to make a correct diagnosis.
Your family clearly respects your medical knowledge as you state everyone comes to you for advice. May I ask exactly what your medical background and experience is?
Your concern is admirable but unfortunately you have no power in this situation.
My suggestion would be to talk to the social worker at your aunt's hospital. He/she can certainly answer general questions about someone in your aunt's situation without breaching any HIPPA laws. The SW will know the Medicare guidelines for such a situation.
Your cousin may not have legal power over his mother is she has not specifically given it to him. Given their long intertwined lives it is possible she still thinks of him as a defendant child not capable of making decisions for her medical care. Legal advice was obviously taken at some point to put their affairs in order, which is excellent.
It also sounds as though the stroke your aunt suffered accelerated her condition and of course any surgery for an 80 year old certainly can adversely affect the patient's cognitive abilities even if only temporally.
People on this forum have wide experience not only about your current concerns but professional life in general so on first reading the first impression (at least mine was) is to step back and allow the professionals to do their jobs. If it is possible to visit your aunt as a loving relative i would see that as a good move as long as she is willing to see you. I certainly see your frustration but sometimes the best thing to do is sit quietly, observe and listen.Blessings.
Loving them is different than supporting them. If you are content with the way care is being given then by standing back you will show you are supporting them. If you think that changes can be made for the better then maybe you are not only supporting them but also letting them know that your love for them is why you are suggesting changes .
And yes, it can be tough to jump in and it can be tough to stay back. It is a choice.
Your concern about your aunt is legitimate. She can be held in a psych ward for 72 hours on a "hold", but can actually be there a lot longer. In my state, a suicide risk patient can be monitored as long as the psych drs want, then they have to undergo a lot of testing, and eventually the decision is made as to what long term TX will be. It could be that the son will not even have a chance to weigh in on her long term care. She may be placed in a psych hospital/care facility without his "consent" if she is deemed too sick to return home.
It sounds like this son is completely clueless about his mother's health. You keep getting called, can you sit down and really talk to him? (You probably already have done this...)
Yes, you can call APS on an anonymous basis. I don't know how much they can do. Maybe just check the living space and make sure Aunt is safe.
So sorry for you being dragged into this. Families make such drama in our lives. We'd never put up with this from strangers!