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.
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.
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.
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.
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.
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.
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.