Well you folks know I have been agonizing over what is the last stage of Alz. I am not sure that my mom is there yet..I know most Alz pt seem to get worse than my mom appears to be.
I am however dealing with a whole new set of problems. Or should I say they are all coming at once.
She no longer has BMs on her own. She sleeps more than she is awake. She seems to be having some kind of mini seizures. She startles really easily ..you have to talk very softly...and yet she is hard of hearing. She holds food in her mouth for a long time before getting it down....as if she has to think about it. She is drinking more than she is eating..refuses to wear teeth. Is holding one side of body in a more or less stiff position most of the time. She has not had another stroke...cat scan showed she has not had another stroke since the one she had ten years ago. She does however know who I am sometimes. She calls me by name. My name...she has over the years called me by lots of names but is lately using mine...go figure that.
I keep looking for advice on this end stage and I know it could last years like the rest of them have but I am not finding a lot. Anybody got a good site on last stages of Alz. I can find lots of things on first and mid...but I guess by the last stages they are usually in NH.

Thanks May,

I want to try and get all the seizure info a bit more centrally located so it doesn't overtake this thread more than it already has. I didn't mean to saturate it like I have!! So for now I won't add to it. It's only in the last few days I've realized that even though many numbers of matches may come up on a search, for the most part, they just say the same thing, that it can happen, what seizures are, and little else.

If I can't get it more centrally located then maybe I'll just make a Seizure Info thread under News and Research and afterwards ask Rich to delete my posts here, after I've got that done. Don't want to lose what I've found - it took too long!! Then we'll know where you can tell people they may find some answers at least.

I apologize for clogging up the road here

Cathy

Cathy , what a wealth of information you have provided.Thank you

Post moved to News and Research under "Seizures & Alzheimer's"

Cathy

This message has been edited. Last edited by: ces,

Post moved to News & Research under Seizures & Alzheimer's

Cathy

This message has been edited. Last edited by: ces,

Wounded, good , the doctor has requested hospice.It will give you the help that will make a difference

Hi wounded,

I'm sorry it has taken so long to get them but I think you'll feel a great deal of relief once Hospice establishes themselves with you! Hate that hubby had to go through the fall and trip to the hospital first Hang in there, this will help

Cathy

Wow, what a wonderful gathering of information from all.Thank you to all of you.

well here i am again, i had to take my husband by ambulance sunday morn as he slipped in the bathroom and fell ..he had took off his depend and peed in the floor causeing him to fall..the dr at the hospital says it is time for hospice and so they brought the hospital bed tonight with bedside table and potty chair..i have changed dr's now because the other one was dragging his feet..i found out that so many dr's dont want to be bothered with all the paper work .such a shame as my husband had to suffer because of one dr..they have had to restrain him at the hospital because he kept getting out of bed and peeing all down the halls and in other peoples rooms..so i hope when he gets home he will calm down..he is a big man 190 lbs and 6'1 my life is really turned upside down now..well hopefully tomorrow will be a better daybyam

Hi Mom's Buddy...

No need for apologies, there are many perspectives regarding the "stages of AD" and their value. When my husband and I first began this journey, we were advised by many to learn the stages and know they were only an outline because each person was an individual and would most likely vascillate among several stages during their personal progression through AD.

With that said, what I've found as I've continued on the caregiving journey was that the stages were most often used when speaking with our medical teams. I've also found the stages are very useful when speaking with family members or working with legal advisors. On the other hand, what my husband found (and he has spoken of the AD stages often, both publicly and privately) was that he could integrate the staging information when determining his long-term medical and financial plans as well as help educate others facing the same journey.

I realize not every person is prepared or able to confront or accept their AD diagnosis and, in time, I'm sure Alan won't be quite as "expressive" either. Truthfully, there are times when denial runs rampant in our own home as well... trust me, it is not an element of our daily conversations. However, to us, there is more harm in not knowing or acknowledging the stages of AD because it helps the person who is able to handle the realities of AD as well as their family members and associates.

Lastly, and at the risk of sticking my foot even further down my throat, it is my opinion that caregivers (if at all possible) must know and integrate their loved one's perspectives regarding this disease as well as any other life-threatening disorders. This is particularly true when it comes time for respecting their positions while making those difficult decisions regarding treatments, surgeries, and drug management. AD is just one disease that effects an entire family unit and caring for someone who has it is, at best, an unsteady journey.

Wishing you and your mother the best life has to offer, today and everyday.
Joan Marie

quote:

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Originally posted by Moms_Buddy:
Joan Marie and all - I apologize for my "no steenkin stages" remark - I was being flip. Of course people should be familiar with them, but I was trying to point out that individuals do not necessarily "fit a mold" as prescribed by clinical definitions... Certainly we all have to be aware of changes which may signal other problems entering the picture. The manifestation of symptoms themselves may also change over the course of the disease... I think the best thing any of us can do is to keep our "radar" up, educate ourselves through all means possible and become familiar with not only the disease process, but individual characteristics of our loved ones as well so that we may provide the best personal care that we can and avail ourselves of specific aid when it is available, particularly toward the end.

Caregiving and being afflicted with the disease present very different challenges and courses of action. I can only comment from a caregiver's perspective.

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Thanks CES those sights were very useful.!!

More on seizues...

The following link is presented by Mayo Clinic via a special arrangement with cnn.com. "Epilepsy" offers an overview of various seizure types, suspected causes, multiple means of diagnosis, and treatment plan options. What I found particularly interesting about this piece was the connection to Alzheimer's disease.

In addition, many researchers believe the epileptic type of seizures specifically found in patients with AD is caused by abnormal electrical activity in various parts of the brain (as opposed to a "global" hit) which then can cause a random event or a series of events. Gratefully, every related article I've ever found states this type of untoward brain activity effects a relatively low percentage of people with AD but there was no reference to a particular stage of AD. The preferred drug of choice to offset these episodes is a very low dose of Klonopin which primarily acts as a muscle relaxant and has minimal impact on cognitive abilities.

My husband, who has now entered the season of moderate stages AD, presented his original condition with nocturnal myoclonic jerking three years ago. Although he was immediately put on Reminyl after his AD diagnosis, it took another year before his geriatric psychiatrist began treating him for this ancillary disorder. Suffice it to say, both of us rest a lot better with Alan's nightly dash (.5mg) of Klonopin. The use of same is also prescribed on an "as needed" basis to offset extreme anxiety... a wonderful tool with little to no side-effect other than having a safe place nearby for him to rest or even to nap for awhile.

Gabgan, I truly hope you (and anyone else who is caring for someone with what appears to be seizures) can find the help you and your loved one deserve. As it was explained to me, many times doctors assume if the patient is in the later stages of AD, it's likely to be a small stroke (TIA) and little or nothing can be done. I can understand that since both disorders do look quite similar but I would encourage you to pursue any non-invasive diagnostics that your mother can tolerate and move forward with the treatment options available. Please let us know how it goes for your mother and for you... I know you are facing some very difficult times.

Warmest regards...
Joan Marie

Post moved to News and Research under "Seizures & Alzheimer's

Cathy

This message has been edited. Last edited by: ces,

MomsBuddy, you just about had to come over here and do the Heimlich on me when I read "Stages? We don' need no steenkin' stages!!!" I was eating some garlic toast and just about choked on it laughing

I can understand why earlier on people may feel better knowing the stages, that's all well and good. And to have a familiarity with them is good too. But it is just an outline, a guideline. Unfortunately the disease doesn't read the book, and the disease rules. And the disease isn't going to give us a clue as to what tomorrow brings. There are people out there that say, okay, these are the stages, this is what's going to happen, and that's that. (I'm not saying that's anyone here. We've been living this too long and know better.) Well, no, it's not. Several years ago Mom quit eating, quit talking, quit walking and started sleeping the clock around. I thought that was it. I thought we were looking at the end. And I'm not, nor have I been one to follow the stages. But after weeks like that she did a 360! And stages can't account for that. I think it's widely recieved that once you lose ground in AD, the chances or probability of getting that back are pretty low. Especially that much ground!!! That's the general experience of people. But it's just how things happened. Mom just changed. It took prodding and persistence, and certainly didn't happen overnight. But I got her back from that particular abyss. And I'm thankful I did.

I think the only time I really read the stages with any intent was when Mom was being evaluated for hospice when we were down in Texas. I had to familiarize myself with them then, not that she was accepted.

We just all need each other here

{{{{{{{{{{{{{{{ hugs }}}}}}}}}}}}}}}}}

grammy,

Trying to find you articles on seizures in AD, definite lack. In statements about stages you can find those that will say people in late stage can seize, not terribly helpful. Many articles about "Alzheimer's Gene Linked to Brain Injury Seizures", but that's not what we're talking about. I'll look some more later today.

For now, this is what I just finished telling someone else on the topic:
The seizures that can be had with someone with AD can be so subtle. (The only one that knows if Mom is having one is me. Day Care called me one day to say she was on the floor acting up, could I come do something with her. I walked in took one look and said, "y'all, she's seizing". All of a sudden I had all these red faces around me.) 10% of people in the more advanced stages of AD will have seizures. They may or may not need meds. If it's the real tonic clonic type, (severe muscle jerking, flailing of extremities) and they're at all frequent, those people may need meds. If they're less severe and not all that frequent, they might not be medicated. The side effects of the meds in the older age group, plus the "added attraction" of being an older person with AD, can cause more problems than gains. Mom is normally post-ictal for say, 1 to 4 hours. (post-ictal is a state, a period of time, after someone has a seizure, when they'll frequently sleep; they're also likely to be slower to respond during this time than usual) Some people may only be post-ictal for 20 minutes or so. But she has been post-ictal as long as 10 hours. The seizures themselves are usually fairly short. If they're really long I suppose that may be another group that might need to be medicated. Mom might have 2 in a week, and then nothing for 6 or 8 months or longer. The seizures themselves may last 30 seconds to, say, 2 minutes. I don't have her on anything. Another problem with being medicated are the drug interactions. There can be many that will effect the drug levels of the anti-seizure med chosen. (and you really have to keep up with the drug level testing, too, really important) And then just interactions of all the meds together.

Is the doctor going to agree it could be seizures? Not always, especially if they don't see it happen themselves, and what are the chances of that happening. (Ha, I suppose there's an upside to that, chances are they aren't going to add a new med based on just one episode!) More often than not docs will say all you really saw is a TIA, transient ischemic attack, like a "mini-stroke" without lasting effects. That's always possible. As long as no one tries to medicate Mom, I don't care if they believe it's seizure activity or not. Actually her primary believes it, her neuro doesn't, and I don't care. I'm sure there are notes in Mom's chart that read: Daughter "claims" patient had seizure. Some of them just hate that I've been a critical care nurse for 28 years. I know "the look"

What are you seeing that makes you wonder if MIL is seizing? As subtle as they can be, I know it may be hard to describe, that's okay

Cathy

I forgot to mention the creepy reality of watching her confusion over what to do with food in her mouth......no reflexive chewing and swallowing sometimes, choking on drinks, swallowing toothpaste and mouthwash.

I'm dealing with this much better. I have a quantum universe for Mom with our almost two year old baby grandaughter. I don't even feel so angry nor sad about the dementia lately. It's just seeming like part of the circle of life. All I can do is let it be redeemed through my own love and strenuous caregiving.
It was unbelievably gratifying to see my daughter, the young mother, get Mom up, change her diapers, help her into her wheelchair, cook for her and her own baby and do the dual feeding of breakfast, with incredible good humor. I must be doing something right. My own daughter let me sleep in and cared for Grandma herself so she could show her 22 month old how we care for others. Sigh. How could life possibly be more meaningful?

Hi all.

I'm in this too, so overdone at the moment that I can't really express myself.

I brought Mom back from the NH Tuesday before Thanksgiving for "Three days". I wanted to be sure I was physically capable of caring for her before I checked her out. I am

So here we are in "stage 7" if I understand this correctly. Mom broke her hip in August, then had a hysterectomy in Oct for a bad uterine cancer that wasn't very invasive. Her nursing home stay was Medicare therapy after the two crisis.

She can't walk or even get out of bed herself. She can do a bit with her walker if everyone supports her. She now wears diapers and is unaware of such things as diarreah. She has no motor skills, can't stand up effectively without all kinds of help, nor turn to get in her wheelchair or onto her potty. Her teeth are a mess, someone has to clean them for her. She no longer eats by herself, she can't hold a cup, it all spills. She can still express fears that are valid once in a while, fears of being a burden. She isn't.
I had her for this looooong weekend with just family help, tomorrow I'll call Hospice and check around for other help I can hire. If I do everything for her that I should every day in the morning, I can't do anything else.
She doesn't eat or drink enough that the diapers are a problem. She really just needs to be on the potty twice a day.
Enough for now.....

I suggest you call Hospice and see if they will asses her. To qualify for Hospice she does need to be stage 7 with a qualifing complication. The six month rule no longer is valid with most Hospice using Medicare as a means of paying for the care. Not all Hospices use s Medicare but most do and use the guide lines that Medicare gives them for qualifing a LO. I covered qualifing and some info on Hospice in an article Hospice and Alzheimers Some Hospices are still rather prejudice towards Alz. so be armed with good info, just in case you do need to educate them.

Does anyone have a site that they can make reference to....think I am dealing with seizures iwth MIL now..just need a bit more eductaion.