Mom is in stage 5 ALZ and had a pretty serious TIA this weekend. I don't know much about strokes/TIA's, but I'm learning as quickly as I can. She had several TIA's in the past, but this was the most significant one: She was not able to speak for about 8 hours afterward, then recovered almost fully over several days, except she is weak and in a wheelchair. I have read that her chance of a full-blown seizure is fairly high for the next week, especially. Mom fell twice this past summer and I now believe there is a good chance that those falls happened because of an unrecognized TIA because her TIA this past weekend happened after/during two falls within a time frame of about 2 hours.
It would be very helpful to hear from others whose loved ones with ALZ/dementia went through this and if you have any suggestions on how you coped with the stress. Mom could not swallow after it happened, so I'm afraid that might be an issue if she has a stroke. I'm trying to learn as much as I can so that I'm a little more prepared if, heaven forbid, it does. Does anyone else have experience with this? Dad also has ALZ and is stage 6, but he has been experiencing seizures, rather than the mini-strokes mom has been experiencing. I am stressed out at times because the nurses have been calling me so often and I feel like I can't relax anymore. Worse yet, it always seems to happen when our family is away for the weekend and I can't drive fast enough to get back.
There is a very good possibility that a stroke will take her life before the Alz will kill her. My Husband had been diagnosed with Alzheimer's and I strongly suspect he had Vascular dementia.
I hope mom (and dad) have DNR or POLST forms filled out.
CPR can be very hard on a person that is frail. Breaking ribs and possibly the sternum and with broken ribs punctured lungs are a real possibility. And that would usually lead to pneumonia.
If they have not filled out either of these forms if you are POA for Health I suggest that you fill them out for them.
Please resist the urge to have CPR done, resist the urge to intubate or do IV's and please no feeding tube.
I can't imagine the difficult decisions I will have if she gets a full blown stroke. She couldn't swallow for several hours after her TIA last weekend, so I'm guessing she will have the same issue with a stroke. Mom wants a feeding tube so "she won't starve to death" unless the feeding tube would cause pain. How in the world I'm supposed to make that kind of difficult decision is beyond me--- especially if it goes against her wishes. I can't really explain to her at this point in time the different consequences of feeding tubes and have her really understand fully --- to her not having it would mean she would starve. We just had this conversation today, so it is weighing on me. Years ago, we had the same conversation, but that was before I understood the issues with feeding tubes and how they can cause more harm than good.
Mom passed peacefully at 95 years old after taking to her bed one day, becoming semi comatose, and staying that way for a week. I felt relieved when she passed bc I knew she was finally whole again and the wretched dementia was a thing of the past, as were the strokes.
Best of luck to you
I’m sorry you’re going through this, and unfortunately I can relate. Not sure my experience can help, but for what it’s worth…
Backstory; my mom had a stroke when I was 7, in front of me. She didn’t have the face droop and severe physical limitations, but did lose her speech at first and was not the same mom after that. Cognitive issues and the like. She went on Koumadin (sp) blood thinner for years which likely caused problems later, but honestly I think it was the best call for what was available and probably bought her a lot of time. In 2020 she had another stroke, and that kicked her increasing dementia into full speed and she ended up in MC.
Prior to that I’m sure she had some little TIA’s because I could always tell when her cognitive was dipping. About a year after her second stroke she had a big seizure and ended up back in the neuro ICU. This one was a big hit and really knocked her out physically. For the big seizure she had trouble swallowing as well.
For each of these three major incidents, I saw a major instant decline, followed by rapid improvement, followed by a slowwwwww improvement over a long time. But never back to the previous baseline. To her credit, even with dementia she’s a go-getter and does all the PT and suggestions available.
Since her big seizure she’s had no less than a dozen little seizures where she zonks out fr 5 minutes - I mean she basically almost dies - and then pops right back! There is no predicting the timing, she had a flurry of them a while back and now no more in about a year. She’s also about level 6?? Ish ALZ/vascular dementia combo I think.
Every time a seizure happens the facility - BLESS THEM - calls me. Our care plan now is to keep her in place and not to transport. This has provided me with some comfort, but every time the phone rings from there I jump, thinking This is It, and then it’s a request for signing a vaccination form or something.
What has been crazy making for me is the not knowing!She could have a seizure tonight and go, or, the way she is physically otherwise - gaining weight! - she could go on for years!! In all honesty, and this might sound harsh, but I wish for her to go with a quick blink-out seizure and not keep declining to the point where she can’t swallow again. I think that would be a small mercy, but it’s all out of my hands. It’s hard not to think about when the phone rings again….
This isn’t really comfort, but I do know that these strokes and seizures and TIA’s are on their own timeline. There’s anti-seizure meds of course, but even with those this situation has a mind of its own. And even in dementia Mom tries to take care of herself when helped, so there’s simply no more to DO. It’s up to a higher power. Easier to say than feel, but keeping mom in a good place with a plan not to transport helps.
We all know that life can change in an instant, but there’s something about the strokes and seizures that drives that home on the regular. I feel like it’s my fate to witness my mom chip away in sudden bursts. It’s really hard but knowing it is out of our hands does help. I live my life the best I can ( messily lol ) and know that I’ve made the right decisions for mom’s care.
Excuse the long reply, but your post really struck me. I’ve never told this whole story before, and it’s been a release. So your reaching out helped me! Just know there are people out there - even in internet land - who get it. I hope you can find small joys in the middle of all this uncertainty. Smelling flowers, walking the dog, going to a beach.
Take Care!
Hugs to you, Madison --- I'm right there with you, but I sure appreciate hearing your story and being able to tell mine.
I don't know what testing was done, but if your mom is DNR or palliative care, perhaps none, and I don't think that an attempt to do any carotid artery surgery would even be suggested as appropriate given Mom's underlying problems.l
I think that you are looking at the inevitability of continued TIAs or CVA. We all go of something, and this may be what takes your Mom. I would discuss ALL OF THIS with her medical team now. I would encourage all the care she can get, including hospice consult if doc feels this is appropriate. If your Mom does lose her swallow I would make no attempts at supplying nutrition artificially by any means, NG or PEG as it would prolong misery, lead to wasting, diarrhea, bedsores, sepsis.
I am so sorry. You have had what seems to me a warning of what is to come, of what make "take" your Mom. Please consider discussing with her medical group as her POA. It is in some sense AWFUL of know what may be coming, but it DOES afford you the opportunity to plan for it, to make informed decisions, and to know what will best keep your Mom comfortable.
I wish you the very best, and comfort for your Mom.
The doctor has basically told me that there is probably not a lot they can do for mom if she has a full-blown stroke. But of course, I question that --- just because I'm grieving her loss. Perhaps they could chance the clot busting drugs if we get her to the ER fast enough? But would that set off a bunch of other issues and force mom to be in the hospital for a long stay/death? The only thing mom really wants is to be at "home" (assisted living) with dad. But does she really understand that by refusing to be admitted again, she may never recover or die? The thought process in all this is exhausting and stressful. Thanks for your feedback.
TIA's can come at any time and without any warning. They can be clustered, or have long periods of time between them.
Is she hospitalized when she has these, or are they dealt with 'in house'. At some point, I would think you'd want to see her have an MRI or some kind of scan to see the damage.
You can't predict what damage a stroke will do, so please don't waste valuable energy and thought on the 'what ifs'. That's pointless--she will continue to have strokes, at some point, she will either pass away from them or she will be unable to function. There's no plan here, and can't be.
I don't mean to be negative--but everyone dies of something. I'm pretty sure my mom had a stroke and died, but she was 93 and ready to go and we were all very glad that she had a peaceful passing.
And yes, things never happen when it's convenient. That's just the way life is. I'm so sorry (I'm going through this with my MIL right now).
Strokes will always leave some kind of deficit after they 'resolve'. You can't plan on what it will be, so just try to be flexible and not have high expectations for total recovery.
Mom was hospitalized this past weekend for the TIA. But I'm not putting her through that again and I've already talked to the head nurse at her assisted living with a care plan. We will be calling in hospice and taking care of her there should another TIA or stroke happen. She did have an MRI, but probably never again. It is just too disturbing for her at the stage ALZ she is in. Thank you for your wisdom.