My mother has severe congestive heart failure and increasingly worse dementia and a decision needs to be made about treating her. The cardiologist has been pushing to try putting in stents just so he can get her out of the hospital as quickly as possible and keep her from coming back. However, since her mental health is steadily declining to the point she is a risk to herself, I'm not sure that prolonging her life physically is the humane thing to do. He called today again to try and push me to make a decision about surgery and I pointed out several things about her mental health and said I wanted to consult the psychiatrist that has been treating her before making a decision. About half an hour later I get a call from my mother basically telling me that I had been listening to the bad people and how could I believe the awful things they say about her. How I was a huge disappointment and even though she loved me as her daughter there was nothing left for us as far as a relationship. I couldn't figure out what was going on and called her nurse only to find out that when the cardiologist called me he was standing in her room and never bothered to tell me that. So our entire conversation was overheard and she knows I have concerns about her mental health. She is in complete denial that she has any issues and now views me as a traitor. I'm her only child. She has no other family and if she refuses to have anything to do with me going forward. There is literally nobody to help her and I feel like it's all this doctor's fault. Not to mention the fact that she will die thinking that I betrayed her when all I've been trying to do is what best for her but she's incapable of understanding that.
Just go forward with honesty. Tell Mom a simple version of the truth.
Tell her the Doctor says she is very sick. That she needs a heart operation. That you are very concerned.
"I've been trying to do is what best".
Ask for her help.
Ask her wishes.
As in, have heart surgery or give over to mother nature.
Hard conversations are sometimes necessary.
Hopefully she understands.
2. Is this behavior (agitation, aggression, paranoia) usual for her or is this "new"?
3. Has she been tested for a UTI? These can cause psychiatric behaviors.
4. Has she been seen by psychiatry in the hospital?
5. Are you seeking hospice services or palliative care?
6. Does MOM want the stent surgery? Unless she has been declared incompetent by her physicians to make these decisions, the choice is hers. You, of course, are not obliged to care for her, either while she recovers or afterwards.
7. What are the risks of the surgery?
8. Why do you think the doc is trying to "get rid of her"? It seems like by treating, her, he is trying to extend her life. Unless she is on hospice, or palliative care, that is the doctor's obligation, to treat her and extend her life.
The surgery is up to mom; does she want it? I agree with you that extending her life at this point seems inhumane. But what does SHE want to do? Is she capable of even making a decision in this state of mind?
I'm sure she will stop 'hating on you' in short order because her dementia will make her forget you're The Bad Guy. My mother with advanced dementia was always angry with me (an only child too) for one reason or another, but would quickly forget why in short order.
I agree the cardiologist was out of line doing what he did, morally; I don't know about 'legally' but that's water under the bridge now. I would be furious with him myself, though. He caused an escalation in a situation for no good reason, really.
You have your mother's best interest in mind, and extending her life with advanced CHF and dementia at play makes little to no sense.
I'd get the psychiatrist's input, a request for calming meds, and go from there. If I was in your shoes, and reading what you added on in the last comment you made, I'd get mom on hospice, nix the stents, and let her pass peacefully with hospice. This is a no win situation for her, and life extending measures would be inhumane!!!!! The best way to keep her OUT of the hospital is to get her on hospice in a hospice house. If you have medical POA for her, you can make that decision since she has dementia going on.
Wishing you the best of luck with a tough situation.
I think you're going to find it difficult to make a complaint about breach of confidentiality when the person who overheard the conversation was the patient. The doctor's duty of care in this is to his patient, not to you.
I'm puzzled, though - if your mother is already seeing a psychiatrist and has been co-operating with those consultations, how can she have been unaware that there are concerns about her mental health?
Are you sure it isn't your hesitation over the stents that she sees as a betrayal?
The other question I have is about your status as decision-maker. Given that the doctor needs your consent to proceed with surgery, I take from that that you have MPOA, yes? In which case, no matter how upset with you she is for the moment, your mother can't actually refuse to have anything to do with you because you will still be the decision-maker; so like it or not she will be safe in your hands in that respect. Only, not speaking to you :(
What do you want to do next? Have you contacted the psychiatrist?
When I tried to talk to her about it on a more alert day after her first hospitalization she first tried to deny what I was saying, and then claimed she was being drugged if she did act that way.
I have requested to speak to the hospital psychiatrist treating her. I want to know if there is any chance of improvement via medication or if there would be a chance improving heart function would help.
Problem is unless she is deemed unsafe to live alone and made to go into some type of assisted living situation she will insist on going home which is a disaster waiting to happen. And now that I have been lumped in with the enemy she will refuse my help as well.
"pushy and wants me to give him a quick yes rather than give me time to make a decision which is in my mother's best interest, not his".
Wait. This IS reasonable. Wait until there is more stability, or at least until you get more facts & you have time to make a considered decision.
Your Mother has many health issues. The Dr is talking heart stent surgery here. Not treating a chest infection or UTI (sure start the usual anti until we get the labs back & swap to another anti if req'd).
Re: nursing home:
"rather lay in the floor and die" than go to a nursing home or assisted living.
If this is what she has ALWAYS said, consider the bases of it - she values 'independance' & 'quality of life' over 'longevity'.
However, if this is NEW, I'd guess it is probably fear based. (We all can be fearful of the unknown).
Trust your gut instinct. To act as your known Mother (pre-confused) would want. 🤗
You are doing wonderfully at being her avocate.
You could always insist on a nursing home, she needs more care than can be provided at home. And REFUSE to take her home.
As far as the cardiologist he doesn't want to hear anything I say about her dementia, just keeps repeating that medicine alone isn't working so a decision needs to be made and the stents might improve heart function enough to keep her out of the hospital longer.
Is there any way for you to take some time and travel there?
At one point, my mom with dementia was in the hospital and a very nice cardiology fellow (meaning post-residency training) was explaining that she wanted to do a pacemaker for my mom. I said that I needed to consult with my brother ( who was POA) and that he would be here later.
The fellow called her boss who stomped in and said "Ma'am, your mother will be dead in one hour if we don't do an emergency pacer".
Sometimes doctors are not so clear on what they are trying to communicate.
My problem with this cardiologist is that he is very pushy in that he tells you what he wants to do, but doesn't want to be questioned and basically dismisses your concerns and then gets exasperated and says well you need to make a decision. Every time I question what the benefit of the surgery would be it's always about keeping her from coming back to the hospital so quickly. If I ask but what if she won't take her meds again he says well she needs to take her meds and then starts pushing for a decision again.
Have you asked the hospitality for a palliative care evaluation?
Get hold of the patient advocate at the hospital. Have her/him look over mom's last several discharges. Explain how non-compliant she is.
Background-- if a patient comes back to the hospital within 30 days for the same ailment, Medicare stops paying. The bean counters are almost certainly on cardiologist back about stopping this revolving door.
Getting her on hospice/palliative will stop this.
If not, and if your mom still has enough capacity to choose her medical course, she does not need to include you in these medical conversations.
https://www.google.com/amp/s/khn.org/news/hospital-readmission-penalties-medicare-2583-hospitals/amp/
After that, transfer to a nursing home would be the only option no matter if she wants it or not, since she is way too sick to care for herself.
(BTW, all nursing homes are not bad. My mother was in one for about 2 years. She had a pleasant roommate with whom she could talk and I had many conversations with the staff. The place was clean and I visited her 1-2x a week where I would take her to group room which had a piano in it, which she played. Of course they are not all good, but then you have a perhaps more tractable problem of finding a good nursing home. There must be rating sites for them, which they must be aware of. Medicare itself evaluates them, I think.)
Or if she meets the criteria, then hospice care: https://www.crossroadshospice.com/hospice-care/hospice-eligibility-criteria/
A pertinent subset here:
* Patient has been diagnosed with a life-limiting condition with a prognosis of six months or less if their disease runs its normal course
*Frequent hospitalizations in the past six months
* A change in cognitive and functional abilities
* Compromised Activities of Daily Living (ADLs) such as eating, bathing, dressing, toileting, transferring/walking, and continence
* Deteriorating mental abilities
* Specific decline in condition
Perhaps in a day or 2, she will forget what she said. People with dementia say all sorts of vile and horrible things. A lot of times directed at loved ones. It is deliberately aimed at loved ones, because a staff member will walk away. A staff member will them to stop. They won't tolerate it. A loved one, doesn't want to hurt their feelings, and feels guilty. Wrong!! You don't have to take being berated or abused. Do not tolerate it! You wouldn't tolerate a stranger or coworker berating you. Do not tolerate your mother doing it. She is lashing out because she is hating she is old, knows something is wrong with her mind, and doesn't like what is happening. You are the easy target.
Does your mom have an end of life care plan? Did she say she doesn't want heroic efforts to keep her alive? What is her quality of life now? Stuck in a bed? Does the doc say the stents will let her live so many more years? She has congestive heart failure so it's not going to stop the disease.
Id go by what her directives say. I'd ask the doc will it make her last few years more comfortable, or do nothing? If you can't decide, ask him what would he do if that was his relative. If he said I would do it, then I would, and let the cards fall where they may. If you cant make the decision, let him. If your mom hates doctors, and everything medical then no. Would your mom be combative in the hospital? My mom had congestive heart failure. She never wanted to go to the doctors. But at the end of her life she wanted more time. She got stents. Most people want life.
I had a woman with dementia say very vile things to me. She was just put in the nursing home and was lashing out. I kept telling myself she has dementia but it still hurt. I finally went (grey rock) not answering, not saying anything, not reacting. She did not get the response she wanted and stopped. They want the reaction.
Do not take it personally even though that is very hard not to. It is her knowing she is old and she can't do anything about it. If she yells at the doc, he will walk out of the room. You stayed on the phone and listened to her say nasty things to you. Stop doing that.
Would you take it from anyone else? No, you wouldnt. Don't take it from her either. You dont have to be nasty, just say im not taking this and hang up, or walk out of the room. It will stop. It won't until you stand up for yourself.
Do not keep thinking about what she said. Her mind is diseased.
Every time it comes into your head tell yourself you are doing your best and say it's the disease and put it out of your head. Give your mom some no contact time. Pamper yourself, and do something for you, no matter how little.
Don't see her until you feel better and are stronger. You know you are doing your best. Let it go.
Hospice does not take over care giving.
There may be Hospice companies or arrangements where a patient is actually physically placed in a care facility, but that is not the usual situation.
Perhaps in a day or 2, she will forget what she said. People with dementia say all sorts of vile and horrible things. It is deliberately aimed at loved ones, because a staff member will walk away. A staff member will them to stop. They won't tolerate it. Why should you??? You don't have to take being berated or abused. Do not tolerate it! You wouldn't tolerate a stranger or coworker berating you. Do not tolerate your mother doing it. She is lashing out because she is hating she is old, knows something is wrong with her mind, and doesn't like what is happening. You are the easy target. She gets a reaction.
Does your mom have an end of life care plan? Did she say she doesn't want heroic efforts to keep her alive? What is her quality of life now? Stuck in a bed? Does the doc say the stents will let her live so many more years? She has congestive heart failure so it's not going to stop the disease.
Id go by what her directives say. If you can't decide, ask him what would he do if that was his relative. If he said I would do it, then I would, and let the cards fall where they may. If you cant make the decision, let him. My mom had congestive heart failure. She never wanted to go to the doctors. But at the end of her life she wanted more time. She got stents. Most people want life.
I had a woman with dementia say very vile things to me. She was just put in the nursing home and was lashing out. I kept telling myself she has dementia but it still hurt. I finally went (grey rock) not answering, not saying anything, not reacting. She did not get the response she wanted and stopped. They want the reaction.
Do not take it personally even though that is very hard not to. If she yells at the doc, he will walk out of the room. You stayed on the phone and listened to her say nasty things to you. Stop doing that!
Would you take it from anyone else? No, you wouldnt. You dont have to be nasty, just say im not listening and hang up, or walk out of the room. It will stop. It won't until you stand up for yourself.
Do not keep thinking about what she said. Her mind is diseased.
Every time it pops into your head tell yourself you are doing your best and say it's the disease, then put it out of your head. Give your mom some no contact time. Pamper yourself, and do something for you, no matter how little. You are doing your best. You are a good daughter. You have done nothing wrong. You know that.
Don't see her until you feel better and are stronger. You know you are doing your best. Let it go.
My father also suffered from anosognosia as a dementia patient. It’s very difficult for you as a caregiver - I’m sorry you have to go through this!
His dementia was always worse when hospitalized. Like your mother, he had arterial sclerosis as a Comorbidity, and probably suffered from vascular dementia, although we never had him formally assessed because he was so resistant to any suggestion of mental illness.
One of the things we did as a family was to offer him a choice. We had two assisted living places for him to choose from once he was discharged and in rehab. That really seemed to help as he at least felt like he had a part in the decision making process that way. For him, money was not an obstacle.
Prior to giving him the choice, he was very angry and unhappy. Once we found a good assisted living home - his choice - and tweaked his meds, he was much more content. It is such a burden for you to have to bear this on your own!
I was MPOA and he was moved from his current home closer to me during the end of his life, so I was his primary family caregiver. I found it so painful to have to deal with his resistance and anger. He passed two months ago while on hospice.
You are a loving and good daughter. You need to hear that because even though you rationalize and understand that mom is sick due to the dementia, it still scars you emotionally. You are already grieving the loss of the mother you knew.
Regarding the surgery, I’m curious about your mothers age? Dad could have had a procedure done to stretch the opening of his esophagus (he was having choking issues), but the doctor was very AGAINST doing the procedure because of his age at the time (90). We did discuss the procedure with him, and he took part in deciding not to have it done, although later I’m positive he had no recollection of the discussion.
I hope you are able to resolve this situation soon, and get mom into a good care environment. It’s so hard until you do! Dad bounced around from home care (with caregivers) to independent living with support, and finally to assisted living, once he was there, it was so much easier on me, as I could visit as family, and not have to do the physical part of the caregiving which he really resented.
One place I found tremendously helpful was the Teepa Snow website: Positive Approach to Care:
https://teepasnow.com/. I learned more from her and her team members about dementia care than I did from anyone or anything else.
Dad was also on hospice for a little over a year near the end, and they were amazing! Helped him get one last visit to his happy place (a lakehouse he owned) despite severe immobility and incontinence.
Hoping for a good resolution to your situation! Sending hugs, prayers, and positive thoughts your way: ❤️🩹🫂😔
My Dad also has dementia. We explained to him that his memory is not as it once was and that he needs more care than we (at 75 yrs old) can provide. He has been living in an Assisted Living facility for 6 months, getting excellent care and we visit regularly. He has made friends there & the structure in the facility has been good for his morale. He loves the food but does sometimes tells us that he will "talk to the office about leaving the "hospital" in a few days because there is nothing wrong with him," yet never actually follows through. Your Mom needs to know she has issues she is not aware of (dementia), that you love & cherish her regardless and will be there for her always. Maybe it will "sink in" at some point. I wish you good luck...I know it is not easy.
The real message here is that MOM is still THERE and Mom wants to make her own decisions. Let her, would be my advise, and I wish you all the best.
You made an observation that the doctor wants her to have this to get her out of the hospital. Not true. The doctor will likely have to give her another day for this procedure. Otherwise, without it there is no reason at all for Mom to be in hospital; she doesn't need acute care, rather hospice if she is not getting treatment.
Go ahead with the treatment if Mom chooses. Without it her life is likely forfeit. With it she may have more time. Let her decide. I sure wish you the best. Nothing to do at this time but tell her you were mistaken in thinking she couldn't weigh in on her own decision and you apologize and hope she will forgive you and that you won't do it again.
She may not completely remember your conversation. I would give it a little time and not bring it up again. I went through some similar. She will most likely forget about it. Just reassure her that you love her and are there for her and not dwell on anything negative. She may do enough of that with her dementia. I would suggest reading up on dementia and learning how to deal with it. It’s not easy, but knowing what to do and not do is really helpful. The more you baby them, agree with them, and act super sweet, the better they will respond.
All the best!
In this case it created a problem. You really don't want your mother to feel that her feelings are not being considered! She is the patient, after all, and upset. You might need to "eat a small helping of crow" telling her that you don't want any misunderstanding but as her MPOA, responsible for relaying the final answer, you feel the need of more input from both her and the Dr.s.
Perhaps you could suggest a joint conversation between her original doctor (who ordered the cardiology consult), the cardiologist, yourself and her! As before, you can arrange this per phone. That way the two Docs can clarify some things and hopefully convey that SHE is being heard. And you can repeat their words to her if necessary.
It's a tough choice. Stints help many people, though anesthesia may have mental side effects in the elderly. On the other hand, the prognosis is not good for CHF, and low oxygen in the blood may produce mental problems. Ask the docs about this.