I am the guardian for my step-dad. My mom died very suddenly last year from encephalitis caused by the shingles virus. She was 77 and healthy.
She leaves behind her 92 yo, legally blind husband of 30 years who was diagnosed with dementia approx 5 years ago. We were blown away when step-dad became the surviving spouse!
My mom was a nurse and legal advocate. She had planned everything out expecting the demise of her husband and handled every tiny detail of his life to care for him when his dementia became more debilitating.
The last year has been insane dealing with step-dad. He has always been stubborn and opinionated. Dementia has magnified that to the extreme. His daily life changed so dramatically in an instant. He was placed in memory care facility in January 2020.
Since then he wants nothing more than to go home. It’s relentless and obsessive. He’s a scrappy, agile, surprisingly strong 92 yo! We are concerned he will hurt himself or an innocent bystander when he goes into his rages.
He is currently on his 3rd hospitalization at the Psych Hospital. He landed there after tossing his room, dragging his mattress and recliner out into the hall. He then pushed through an exterior door (which emits a siren) got on his walker to try and hoist himself over the 8-9 foot high gate. All drug therapies have been tried and failed.
So, onto my initial question...his psychiatrist has suggested trying ECT “Shock Therapy”. It involves being anesthetized for a few minutes and then a seizure is induced.
I’ve had two days to process this and have to say I am on the fence. I will be talking more to the doctor tomorrow to learn more. Considering anesthesia and shock to a 92 year old seems insane to me but so does the way we are living now. He emits so much rage and hatred, I can’t imagine what it’s like in his head for him. If we are at the end of being able to have any sort of control through behavioral and medical means, is trying ECT too much?
Does anyone have firsthand knowledge of this?
I am feeling great pressure to decide something. The facility he has been living at has determined he can’t live there unless his rage is controlled. They are recommending a locked skilled nursing facility.
My only experience with ECT is with a good friend whose mild and well controlled depression suddenly spiraled out of control when she was in her early 60s. She was hospitalized and after several meds were trialed and failed, they started her on ECT. Great results! She is still gainfully employed and doing well.
I'd go for it!
I think at this point you have nothing to loose by trying the treatment.
If all other therapies have been tried and have failed this might be your last best option.
I hope it goes well. Please keep us posted
And I am sorry about your mom...
you will have to determine if you think it is too over the top and harsh to give someone that age ECT.
Personal opinion? I would have to pass on that.
Believe me my husband who is currently living at home with me and has some pretty severe dementia due to 2 severe hepatic encephalopathy episodes last year. They put him in a coma and when he woke up it really was not him anymore.
He is confused constantl,y demanding, impatient, and knows just enough about his environment to try to use his symptoms to manipulate people. he constantly yells and yells and yells. Usually something like help! help! help me! or police police. He called 911 emergency from his room at the hospital when they did something he did not like....
yea that was something.
He is a terror to all our caregivers. He is the king of get me one thing at a time and as soon as you sit down he wil ask for another thing .
If you do not respond to his demands he throws himseld out of bed and on the floor sometimes getting injured. Often peeing and defecating on himself in the process. Yeah he is Mr fun fun goodtime these days.
He never lets me sleep he can go on and on for hours at the top of his lungs bellowing single words over and over. If I do not lose it he pretty much knows the neighbors will. so he uses it.
The psychiatric drugs they are giving him through hospice barely have any effect at all. Haldol - morphine - Lorazapam. Fairly heavy handed doses at that. Sometimes they do not even faze him.
I am currently searching for a place to take him as I can not take care of him anymore he is too erratic lashes out physically etc...
AND YET....
If they wanted to give him ECT? I would adamantly tell them NO.
Sadly for all the advances in medical and mental health care we have - the plethora of new drugs that are available...
I am uneasy with over medicating ... what it does to a person when you run that shock through them enough to actually reboot their brain. The trauma of that I cannot begin to imagine. no matter how robost my 64 year old husband appears I would not subject him to that, so a 92 year old man...
It is made to sound humane and effective but really how humane is puposely electrocuting someone? Who thought to do this in the first place!?
A locked skilled nursing facility yes - ECT meh ? you will have to figure out how that sets with you.
I have known a person who had ECT. Her issue was depression. This was in the 60s. It helped her.
One of the talks I listened to was by Dr Nuland who wrote ‘On Death and Dying’. He had ECT in his 40s and is very positive on it. Again his problem was depression. So my examples are not related to what you are dealing with. However I didn’t listen to all the videos. I encourage you to listen and I agree with those who asked what do you have to lose? Medicine (drugs) doesn’t seem to help him. If this procedure would offer him any relief how great would that be! Does the doctor speak of patients s(he) has helped?
They tried everything and like your dad, nothing worked. Her mom was much younger than your stepdad. She was in her 70’s when she was admitted to a mental hospital for depression. Her mom was once a very happy and involved person in the community. She became lethargic and was like a zombie.
The doctors wanted to do ECT. It was successful for her. Do you want to get a second opinion from another medical professional? That may be helpful.
My friend said the newer methods of ETC are different than they were years ago.
Best wishes to you and your family.
One of our last conversations, she told me she had been praying to St Jude because she felt hopeless and she was
beginning to feel better, like her prayers were being answered somehow. His behavior wasn’t changing but a weight had been lifted off her shoulders somehow. She died two weeks later from encephalitis caused by the shingles virus. An answer to her prayers???
Mom began her career as a pediatric nurse and ended it working for the County as a victim/witness advocate. If anyone could compel a person to do the right thing, either by sweet-talking or arm-bending, it was her. It breaks my heart knowing some of her last lucid moments where of knowing that dementia was defeating her and it would then become my cross to bear.
ECT DOES cause BRAIN DAMAGE regardless of the video they make you watch that makes it seem harmless. Also the doctor will probably tell you that there is no danger and that it is now humane. You wake up feeling like you have a headache and a stroke. The longer the seizure the more brain damage.........
Won’t his doctor try some medications that sedate a bit? Seroquel is a good one once your body gets used to it. In the beginning all you want to do is sleep. The doctor has to dose is a little at a time until the patient is feeling fine with that dose. Good luck with your decision . I don’t know if you pray or not but if it was me, in my humble opinion, I would ask about some medications that will calm you down first before I let the doctors pass electricity through a loved ones brain that induces a grand mal seizure and brain damage.
Sincerely,
Ms. April Day
Further, if you think medications are safe, think again. Medications--especially in combinations--can be VERY dangerous for the elderly, including severe side effects, heart damage, and falls.
I know you said the doctors have tried meds. When my husband was ranting and becoming unmanageable I started investigating medications. I found Seraquel Most Drs are not willing to use it because of problems it could cause and the possibility of blame. I decided that a better quality of life for a few years was better than have him be in misery for more years.
I was able to get it prescribed and it worked in 24 hours. He took 25 mg at night and eventually took 25 mg in the morning also. Dosing is so important. Larger amounts can cause adverse reactions.
my husband had vascular dementia and finally passed due to complications From a bad fall. He was very peaceful.
I have learned that his dementia is likely a vascular type also. It affects his mood and reasoning mainly. His memory is still quite good.
https://www.mcleanhospital.org/news/ect-shouldnt-be-last-resort-treatment
I don't think so.
Alternate suggestions for treatment? What is OP supposed to do to help this man? Clearly he is a danger to himself, other residents and staff, not to mention the public, since he is a flight risk. Just saying you don't think this is what ECT is/does isn't very helpful, is it?
You willing to take him in and cure him with the love?
He met my mom over 30 years ago when he was 60 years old. He had two marriages before then with six children. One of his kids contacts me from time to time, the other five have nothing to do with him. The way I hear it, he essentially walked out on both families.
Works wonders.
May help. Good luck
She is a nervous, scared wreck for about 4 to 6 weeks leading up to the "treatment" and then she is a shell for 4 to 6 weeks from the trauma of it all.
She does it because her son won't have anything to do with her otherwise. She get about 2 weeks of halfway decent quality of life between treatments.
I don't think I would put anyone through this. Especially someone that is already suffering from a brain deteriorating disease, but that is just me. I think that the end result could be tragic.
My brother put her in, but tricked her into it because her reaction was HUGE. Talk about Rage. 2 weeks later, he gets into a monstrous DUI accident that renders him incapacitated for 3 mos.
I have to take over trust.
She was outraged, didn't have any furniture or pictures, it was a very crude move I think. (I live 3 hours away )
She couldn't go back home as he had rented it. I made a deal with my Mom, I needed to get her closer to me, so I would CK out a bunch of Senior Living places and let her pick her own since she couldn't go home.
So I frantically physically interviewed about a dozen, moved her into a decent one for a month, (much closer to me) and we started to visit about 10 places.
She finally picked out one.
I wish I could tell you all was smooth sailing, but there are a lot of bumps in the road to Dementia.
But it was better!
I still had to be very hands on with my Mom, spending lots hours with her, 4 times a week at 100 miles a trip, but she did finally adjust.
Because of Covid, she had to adjust to losing me for awhile, but I still window visit 2x a week for a much shorter time tho.
I have tried bed alarms, etc, as my mom falls (or slips) out of her wheelchair still, while she is trying to pick a piece of lint off the immaculately clean
floor.
Seraquil does does work. It's very good, but her doctor prefers not to keep her on anything too long a term.
They have lived in their homes decades. In my mothers case 60 years. We can't expect them to adjust to a completely new lifestyle, and take their independence away all at once. Even if it is in their best interests.
I dont know if any of this helps, but it had finally worked out for me and her and she is pretty well adjusted now. I adjusted my expectations drastically and deal on her level, not mine, and then it works.
Good luck with your step dad.
ECT seems to be very divisive here (and elsewhere.) I will say that despite what I and others noted about this treatment from MANY years ago, it HAS been many years and the treatment regimen would have changed over time. The basic premise is still the same.
Anyone using Cuckooo's Nest as comparison, understand that 1) it is a NOVEL written in 1962 and 2) it was based on treatments provided in the 50's, oftentimes for ridiculous reasons (e.g. treating a gay person????) Thalidomide was also a product of the 50s, and they {eventually} learned the hard way this was NOT a good drug! While it was most detrimental to fetuses, it caused neurological issues for others and likely other negative outcomes. So, any info not taking into account changes since the 50s should be researched further. That was 60-70 years ago, so one would think things HAVE been improved since then (excluding the mindset of some people from those times...)
Interesting article here:
https://www.scientificamerican.com/article/electroconvulsive-therapy-a-history-of-controversy-but-also-of-help/
That said, it appears from some brief lookup that this likely won't be a one-time thing. IF there were some serious issues following the first attempt (above and beyond the normal expected side effects, which includes some short-term memory loss, but if he has dementia, he's already likely lost some of his recent memories), then I wouldn't consider additional treatments.
It also appears that many major medical institutions support this, for the right conditions (webmd, johnhopkins, NIH, mayoclinic, healthline, etc.) and their websites might provide more information for you. Being informed is what you need to do to help you make the best decision.
Some serious discussion Q&A with his doctors, your own research and some soul-searching to decide which is the worse evil (over-medicating or ECT) will have to guide you.
One other thing popped into my thoughts - defibrillators are used to revive people whose heart has stopped, sometimes multiple times with success. I checked the voltage to compare:
ECT 70-120 volts for 100 milliseconds - 6 seconds
Defib - 200-1000 volts unknown duration, but it seems like about the same.
Even get a shock from an outlet? I have. Most outlets are 110 volt, and it wasn't enough to knock me on my butt - it gave me tingles up to about my elbows (contact was with both hands.)
So, would one say not to use a defib on someone, because there are many more volts being applied?
Most certainly get more information from the medical team and continue to ask questions if you are still on the fence, but I wouldn't throw this option in the trash. It just might be what he needs, a few treatments rather than being overmedicated or being left in his current state.
If there is an ethics committee at the hospital or overseeing the psych unit, contact it.
Or, you could try contacting your mother's professional network. Was she attached to a firm of advocates? Could they help?
I don't think this decision can fairly be left to a lay person to handle unassisted.
PS I meant to ask - how was his behaviour before the loss of your mother?
Mom started her career as pediatric nurse and finished as a victim/witness advocate for the County.
I’ve reached out to numerous people since this original post; medical and psychiatric doctors, social worker, friends and family.
The general consensus is similar to what you stated, ECT is a big deal! One family member that has seen it done to a bi-polar individual said it helped considerably but she also felt it was too invasive and assaultive,
It has been refined and for some people, it helps to a degree that drugs and behavioral therapy hadn’t been able to.
He has been on Risperdol the last four days and no major outbursts in that time. That’s encouraging but we have been at this place before where we think we are on to something helpful and it falls apart.
I am still open minded to ECT and he is being evaluated medically to see if he can get through it given his advanced age. He has been sent to the ER dozens of times since the beginning of the year with out of control rages, hallucinations that people or vehicles are going to harm him. He has also been hospitalized in two different psychiatric hospital three times since the pandemic began, totaling 2 1/2 months of hospitalization in the last seven months.
The one thing I AM sure of is that this revolving door type of treatment is not helpful.
but to your question, it seems like there are several things to check, perhaps by getting second opinions:
Do you know what type of dementia is he diagnosed with? FTD tends to lower inhibitions and seems more likely to cause violent reactions.
Is there any experience with using shock treatment on people with this kind of dementia?
Has he been screened for other health issues?
But in the end, it becomes a quality of life issue, and a judgement call. It seems like either drug treatments or shock therapy could result in a zombie-like existence. The effects of drugs may be easier to undo, if the results aren’t good.
That book sounds like it was an interesting read.
I suppose the OP has to seriously look at the data provided by the professional medical community and come to a conclusion that they feel will do some good.
At first hearing of this topic, it sounds horrifying but didn’t we feel that way about many procedures in the past that now are commonly done, such as heart surgeries. So, who knows what the future holds for ECT?
Plus we can’t compare it to earlier treatments that were done. The methods used now are greatly improved compared to past treatments.
Look how far we’ve come in all medical treatments.
No treatments should be agreed upon until it is researched by the patient and other family members who are involved.
Let the facts speak for themselves. If a person isn’t comfortable with it for whatever reason then they will have to consider other options.
If all other options have been exhausted, then you are faced with not doing anything and that isn’t going to work either. It’s tough. These aren’t easy situations to be faced with. My heart goes out to the OP.
All of life is a gamble. Nothing is gained without taking risks. Sometimes it’s hard to know what to do. If the risks outweigh not doing anything which is surely not a good situation, then I would lean towards taking the risks in order to gain the possibility of a better future.
My friend was pleased with the outcome with her mom. Her mom had ECT for depression. She had severe depression before her treatments. Now she can function in life again.
It was scary but my friend’s mom is doing a whole lot better. Maybe others don’t do as well. I would ask questions about what trouble exists in those that the treatment hasn’t been successful. That’s all a person can do.
My sister was a psych nurse, working at a psychiatric hospital. She commented once that she'd seen ECT being performed, it was very unsettling, and she could never be comfortable recommending it. Her overall opinion was not positive.
I think what I would ask the recommending physician is exactly what kind of behavioral issues ECT could address...i.e., how could you expect that his current behavior would be altered, and improved? What functions and individual behavior would he still have? (Like others, I keep envisioning the Cuckoo's Nest results.)
From your description, he's pretty much out of control, but I'm also wondering about your statement that "all drug therapies" have been tried. Is it possible there are combinations that haven't yet been tried? How many psychiatrists have examined him? Are they independent physicians or ones specifically affiliated with the facility he's in now?
What always concerns me is that the dose may "shock" someone beyond behavior control into a zombie like state, compliant, obedient, and literally like a robot w/o individuality at all.
I wish I could offer better insights; I just have these uncomfortable feelings about the "therapy" after my sister's observations of how horrible it was to witness.
If you have medical questions, ASK THE DOCTOR. Not an internet forum. You can also get a second opinion.
I find it unsettling people are giving medical advice who know better than a doctor who seen and assessed the patient and basing their advise on a fictitious movie.
this is a brain storming/support platform.
Doctors have the medical knowledge, caregivers have the experience. It’s rare for a doctor to actually have both. Many on this forum have lots of experience of 24/7 caregiving, professional medical field as well.
seems like the doctors are getting desperate at this point if they are willing to try this therapy. Modern medicine seems to be a curse and a blessing sometimes.