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Dad is near the end of stage 6 ALZ, not yet eligible for hospice but will probably be in another year. He has been getting seizures about once a month (he is on medication) and also has the beginning stages of dysphagia (swallowing/choking issues.) All his prior seizures were 5 minutes or less. He lives in Assisted Living with my mom (who also has ALZ) and I go in about twice a week or more. Because of where he is in his stage of Alzheimer’s, both the head nurse at the facility and I agree that it has been damaging to take him to the ER and we try to avoid it as much as possible, within reason. However, this week he had a 15-minute tonic-clonic seizure. He did come out of it and appears to have not digressed cognitively, even though it was a long and dangerous seizure. We did not take him to the ER, as there was not much they could have done. However, I'd love to know if anyone else is facing this with an ALZ loved one and how they have decided to manage their care.

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When my mother was placed in permanent dementia care the policy was that everything would be done to care for her and basic medical attention /maintenance and the visiting GP but they would not send her to hospital if it was needed. Eg. Stroke pneumonia That had to be the decision of the family. The policy was that they did not help to prolong the illness. Their view was to keep them comfortable
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An update: I talked to the head nurse this morning and found out new information: The actual time span for the seizure this week was less than 5 minutes. When the first nurse talked to me, she included the time that he was showing symptoms and recovery time. That changes things totally --- as my understanding is that seizures less than 5 minutes are not nearly as concerning as something longer than that.
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When the hospital trips cause more anguish and illless than the help it provides, that's when you stop.

My mom was in the hospital for two weeks during the worst of Covid, so she had dementia, was in an unfamiliar place, and I wasn't allowed to see her. It was horrific.

Even before she came back to her nursing home I decided that from that point on she was to be treated in place at the memory care facility, and I put her on hospice the day she came back.

She had no particular illness that was going to kill her in six months or less, but she qualified for hospice anyway. She had excellent care from her regular caregivers, plus the hospice nurse was an extra set of eyes on her, too. She lived another eight months, and was indeed able to be treated in place for everything from Covid (which she caught in that stupid hospital) to gout, to wound care for a deep pressure sore (also from the hospital). She died peacefully in her memory care.

If I was you, I'd ask for another hospice evaluation. I think your dad should qualify with all he has going on.
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So sorry that both your parents have ALZ. That's just too cruel!

My mom has mild/moderate dementia, getting more moderate every day. I have a DNR and POA has been activated due to her incompetence. In April she had an unwitnessed fall in her apt where she said she hit her head. So I stupidly agreed to let them send her to the ER. I was babysitting for my grandkids so she had to spend all day there alone. I knew she could not give them any info of any value and would be hard pressed to make any decisions. They ended up admitting her which was a mistake on my end for letting both the ER trip happen and the admission. Next time, my go to answer will be a hard NO. If she has a broken bone or is bleeding profusely, OK. Otherwise no unless someone can work really hard to convince me otherwise. She is unhappy, understands little of what goes on around her and remembers even less. Also has pain here and there and she's depressed. Sounds pretty horrible to me. And to her to.

So, NO do not send your dad to the ER. Do not do ANYTHING to extend his life. Instead, strive to keep him calm and safe and pain free. I would seek a palliative care consult ASAP. I am waiting for my mom to decline enough to do so and will seek a hospice eval as soon as conditions warrant it. Do NOT wait until he's almost gone to ask for a hospice eval. I would do it now. If they say no, fine, go palliative instead.

Best of luck. Keep us posted please.
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There comes a point in time when palliative care becomes the most compassionate decision that doctors can make for an elderly patient. I agreed with this position.

Eventually my mother went on hospice.

My mom lived to be 95. She would have preferred to leave this world a lot sooner than she did. Her body was wearing out.

The final stages of Parkinson’s disease were brutal. She didn’t want any treatment that would extend her life for any reason.
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Not to be rude, but if he has a DNR does he WANT to go to the ER and be intubated if he stops breathing? My mom ( a retired RN) was very clear she would not want this. That is the purpose of the DNR, and to relieve you of guilt if this happens. Palliative care may be of help here. They help in a good way towards making plans and keeping the pt comfortable, as does hospice.
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Forsuchatime Aug 2023
I am the one that made the DNR decision. Dad was too advanced in dementia to make that decision. Would he automatically be intubated if he stops breathing? I am so naive with the medical side of this and trying to learn as quickly as possible. Because if I understand intubating correctly (and not sure I do), that would be distressing to a dementia patient, wouldn't it? I guess I just assumed the rescue squad would do mouth to mouth to get his breathing again and then he'd be okay? I know I absolutely do not want heart cpr because of the ribs that would be broken --- he'd never recover and would be in incredible pain at this stage of his life.
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My LO was o e of the first residents in her MC to be diagnosed with COVID, and when the dreaded call came, I begged that she not be taken to the hospital unless her condition was at the most extreme, and also that she not be intubated.

I felt that my requests were based on her own personal demands when she did her predementia legal paperwork.

She was never taken out of her residence and I deeply appreciated that.

She lived 2 1/2 years after that first illness.
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Forsuchatime Aug 2023
That is awesome that the facility honored your and her request. You did the right thing. I hope you were able to visit her, too. I know my parents would want the same thing, although their decision making abilities are pretty low at this point.
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First of all I am so very sorry for what all are going through.

To be frank, I cannot imagine someone who can no longer even swallow not qualifying for hospice. Time for a re consult with his MD. Make it clear that he can no longer eat and that he will NOT be given tube feedings. He will, I think, well and surely qualify for Hospice. Time to re-evaluate or request a second opinion. It is cruel this back and forth to the ER.
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Forsuchatime Aug 2023
He can swallow and actually eats pretty good. But his swallow reflex is getting weaker and he has started choking on food and liquid enough that the AL has put him on a soft food diet and is thickening his liquids. Yes, I'd absolutely put him on hospice if he was at the point where he isn't eating. That is the point I most dread in this awful disease.
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Forsuch
Who determined that your dad is not eligible for hospice?Call the hospice of your choice and ask for a evaluation and let them tell you what stage he is in. Does his facility require you use the hospice of their choice? Sometimes we don’t realize that we have choices.
My DH aunt has been on hospice several years now. She has dementia and is bed bound. She was on hospice before being bed bound. There was not much difference in her care between Home Health and hospice. We had already transitioned to telehealth visits. She gets more frequent visits on hospice.

To answer your question. No, I have not experienced the seizures with a loved one. That sounds very stressful for all concerned.
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Forsuchatime Aug 2023
I don't think I am quite ready to put him on hospice, but the head nurse at his facility told us he probably isn't at that point either. Thanks for the information you gave about your aunt. It is helpful.
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We put my mom on palliative care when it became clear that going to the hospital was harmful.
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Forsuchatime Aug 2023
How did you know when you were at that point? The scary thing for me is that dad could stop breathing if he has another long seizure and we don't call the rescue squad (I have a DNR for him.)
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