Today I received another email from Kathryn's neurologist explaining what is going on with Kathryn now and her stage. Has anyone here had their loved one have this issue and did their decline speed up in this severe stage?
Email from Doctor:
I would say that Kathryn is now in a severe or advanced stage of the Alzheimer's. The decline or progression of symptoms occurs more quickly as the disease advances.
The word for her new problem with coordinating a motor plan or using tools is called "apraxia."
In order to screen for TIA's or strokes, we would need to do an MRI brain scan. I am happy to order this if you wish. She is currently on medication to help with stroke prevention.
I have added the definition for these two newest issues below.
Apraxia is a disorder caused by damage to specific areas of the cerebrum. Apraxia is characterized by loss of the ability to execute or carry out learned purposeful movements, despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning, which may be acquired or developmental, but may not be caused by incoordination, sensory loss, or failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series).
Aphasia is an impairment of language ability. This class of language disorder ranges from having difficulty remembering words to being completely unable to speak, read, or write. Aphasia disorders usually develop quickly as a result of head injury or stroke, but can develop slowly from a brain tumor, infection or dementia.
Jim, I didn't have a similar experience with my husband, but my comments, for what they are worth, are: I wouldn't ask for an MRI brain scan to be done. It would just be one more procedure to subject her to, and the results won't change her condition or treatment. The neurologist is already giving her meds. to prevent strokes. I think that the diagnosis of "severe or advanced progression of Alzheimer's with a more rapid decline" means that you should be prepared for this to happen. The only advice I can offer is that you need to be sure you get enough rest and good food for yourself on this final stage - you'll need to pace yourself. There is absolutely nothing you can do except to be vigilant that she is cared for until the end, but that means you have to care for yourself so that you can do so. I'm sending you both warmest wishes and love.
Anchor: That is super that you have a doctor that takes the time to send you a detailed letter like that. Once again you have provided information that will be a big help to many of us. I have read where the impairment of language ability comes in the later stages. I don't think my dh is in the later stage, but his language is getting worse by the month. I know some on here have talked about their spouses being in the advance stage for a long period of time and others saying how fast they went down hill. I am sure someone will be along to tell you more then I can. What a terrible condition this is.
I am not familiar with the word of Apraxia or what it is involved with the word. Could you explain to me what this means from your comments: "failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series)?" My dh cannot comprehend simple commands....but, can I do the testing of correct movement froma a series...if so...how?
I found this using Google when I put in "Apraxia Alzheimer's".
Definition: Difficulty performing motor activities, even though the person's movement, senses, and ability to comprehend what is being asked are still intact. Apraxia is basically a disconnect between the idea of a task and its execution.
Examples: A person with Alzheimer's might be physically able to button a coat and see and feel the buttons on the coat, but there's a mental gap between the idea of buttoning the coat and actually being able to do it. Apraxia often affects the ability to do things like cooking, dressing, and grooming.
I emailed back to her doctor that it appeared to me that it would not change anything and at this time I leaned toward not doing an MRI unless it would improve Kathryn's quality of life and that I think it would just scare her and would be too traumatic.
I do appreciate that Kathryn's doctor keeps me aware of everything available. She did not recommend doing the MRI.
How lucky you have a Doctor that gives you that kind of personal service,myself an the Director at ALF have asked my LO's Doctor for 3 months to write a "plan of care" so all costs of ALF can be deducted for income tax issues(per IRC7702B) to date no responce but he has no problems sending his bills
There are 4 A's that are symptoms of Alzheimers--the medical names are:
Apraxia Amnesia Agnosia Aphasia
A good example of apraxia is the inability to use eating utencils. Amnesia we all know about--loss of memory. Agnosia is the inability to recognize people or things. Aphasia=loss of language.
I'm not clear whether the doctor's letter infers that the apraxia and aphasia might be due to a stroke, and that's why she suggested testing? However, if Kathryn is already on medication to prevent strokes, that base is already covered, in my opinion.
My husband is in Stage 6 and has had all 4 A's for a while now; the decline has not speeded up.
JimB- I totally understand your concerns, and wish I could offer some advice that would somehow change her quality of life, but in my journey, I did suspect some tia's, mini strokes, and other signs of serious decline were affecting my dw. However, the mri's and testing would only confirm what I really knew deep in my heart. As I watched her lose the most basic skills, there was no doubt that some serious damage was occuring to her, but I chose not to subject her to the trauma of diagnosis. What would be the point of an MRI, unless there was something that could be reversed or corrected. I remember my dw having her mom tested during the final stages, and we regretted that for a long time. It just created more fears, panic, and restlessness for her mom, and we only confirmed our suspicions. The tests were of no value to us nor to the doctors. It is nice to confirm your suspicions, but totally more frustrating in the end when you see the results that cannot be altered or soothed. A caregiver will learn the signs of decline, and sometimes it is not important to confirm that with a doctor. I knew that something had occured on June 14 (ironically her birthday), and that was the last time she was able to get out of bed and walk. Somehow, her legs would not listen to her brain, and she could not figure out how to stand, or how to drink, etc etc.... JimB..it is painful for you to watch the decline, but it is the final part of the journey, and probably the one where you have to become the absolute best caregiver you can be. The time is approaching when you will be suddenly fired from your duties as caregiver, and terminated without much notice. Love her deeply Jim...and you will emerge as a true hero.
What about anosognosia? The lack of self awareness.. for example...the failure to shave for a week and then saying it is one day's growth, or being unaware of their medical conditions, etc..Shouldn't that be added to the list of As?
Anchor20--My DH was diagnosed in 2006, already at the end of Stage 4 beginning Stage 5. That is when I decided and let his Drs. know, we'd do no more testing unless there was an event to be addressed, or a condition that required monitoring (like for diabetes). Why put our LOs through the stress of preparation and testing, especially if for conditions they cannot comply with the treatment for? Why go hunting for more things that may or may not be going wrong, for which we will likely not be able, or maybe willing to treat? And, why re-run tests for conditions we already know exist and are simply progressing as expected?
I see no benefit and only stress for our LOs and us once we're in the later portion of this trip we're on. That's my view.
agnosia i thought was more like a failure to sense things aka sight hearing recognition etc. anosognosia is more of a an unawareness say of having the disease or such.
good discriptions here on the subject. these are all things our spouses suffer from during the course of disease.
Phranque* I agree with you totally. I do not want to subject Kathryn to anything that will not improve her quality of life. Kathryn’s doctor wasn’t recommending an MRI. She was just letting me know if I wanted her to have one she would order it for me. At Kathryn’s last visit I told the doctor that Kathryn’s Mother had several TIAs only because I wanted the doctor to be aware of it in case there was something going on. I did not know that she was already giving her something to prevent strokes at the time.
marilyninMD Thank you, I believe that Kathryn has all four of the “A”s now. She can use eating utencils if she has the right one in her hand but the other day we were out to eat with some friends and my friend tapped me on the shoulder and point to Kathryn. When I turn to look she was using a straw to eat her macaroni and cheese. Last night she was trying to use her fork and knife to cut a cup coaster during dinner. I think she thought it was food.
Phranque* I don’t know how you were able to get through this. We all do I guess but it sure doesn’t seem like it right now. The hardest time for me right now is when she is asleep and I am alone. Since being officially told that she is at this stage I can’t stop thinking about it and when alone I can’t control my emotions. Last night while taking a shower I suddenly found myself sobbing so hard it hurt.
I agree w/carosi...except for routine blood and urine tests, I see no value in many of the diagnostic tools..esp. true because my DW is very claustraphobic. A long time ago it seems, we agreed we did not want either of us to have life sustained w/out a life of quality...tubes, surgeries, chemo, etc. and specified such in the living wills and end of life documents. The Villa staff and I are in complete agreement as to how best to keep my spouse comfortable, clean and pain free without creating unnecessay stress and discomfort. The staff understands the end and supports the journey and in fact believes as I do, for her sake, the end will be a blessing for her.
Mimi--you're right about anosagnosia. I was going by the standard list (Alz Assn and others) put out--for some reason, anosagnosia isn't usually included. Maybe not all AD patients have that symptom, but they do have the 4 others?
Divvi--I forgot there are other types of agnosia besides the visual form. Steve was hit with the visual type so early and so strongly, that's what stays in my mind.
just when we think we know something we find out there is so much more and i surely include myself in the bunch!. !! marilyn, your steve has been a handful from day one:) you are a wonderful caregiver and have done such a good job helping him( and you) transition to placement. jim any of the changes mentioned could be a sign of progression into a more severe stage. but as we know each of our spouses is so different. no rules per se - divvi
Call me stupid or whatever, but I haven't gotten my head around these 4 A's. It seems to me like my dh has experienced all of them (if I understand what they are) from time to time for the past two years. The one that is really getting bad is his speech. The other one is following directions and not being able to do most anything.
Someone, if you can, tell what this is...which one of the A's?...so far this is one of the strangest thing that my dh has done so far. I was shocked. I cut his hair and I usually do it outside where the light is good. But, last night I decided I would do it in the house and the basic light was from overhead. I cut one side of his head and then I told him I would have to have him stand up so I could turn the chair around so I could get the good light. He stood up. I turned the kitchen chair around, he just stood there and spread his legs and tired to sit down facing the back of the chair. I told him he had to turn around and sit down in the chair. I never made any comment and neither did he.
I know this is not any earth shaking problem and it didn't upset me, except, it was so strange it was like an awaking too me....this man is really "losing" it. The worse part to me is that he didn't even seem to know he had done something wrong and when I gently corrected him, he didn't seem to care or understand what I was talking about.
Jim, I am sorry you are hurting. Even when we suspect our loved ones are declining, it is always so difficult to have a doctor confirm. It is tragic, and hard to come to terms with. When I placed Lynn 3 years ago the team of doctors evaluated him firmly in stage 7. Of course I should have known this and did suspect it, but hearing it hit me really hard.
I have changed a lot in these past 3 years. After a simple cold almost claimed Lynn in October, I was told that he was at the end of his journey and to try to prepared myself because I could lose him anytime. Though my heart did skip a few beats, and I did cry, I didn't completely fall apart. We all know we are going to lose our loved ones. There is simply nothing we can do to prevent this. The only thing we can do, is make sure the time they have here with us is the best it possibly can be, for both of us. That is my goal, what I strive for, to make Lynn as happy and as comfortable as I possibly can. Helping him find peace, has brought me peace.
As always, Franks advice is excellent.... just love her deeply. ((Hugs))
I don't know which of the A's it comes under either but my dh and dm both would drop food on the floor while they were eating and just look at it without expression - much as a baby in a high chair. I could imagine them doing the "chair thing" also.
Not caring about things, not showing a reaction--sounds like apathy to me (another A)! It's another symptom of dementia.
Judith--what you described about the chair sounds like a comprehension problem to me--I think it was just too complicated for your husband to understand.
Just got home for a few minutes from the hospital. Kathryn started having trouble breathing at around 5:00pm and began to collapse. I called 911 and they rushed her to the hospital. She doing ok now but because she is unable to tell the doctor how she feels or if she is having pain anywhere they are going to keep her over night and run some test. Her sister is with her at the moment so I could come grab a few things to take back with me. When I left Kathryn was sitting up and seemed to be a lot better and breathing easier.
I am going to ask the doctor if the Apraxia has anything to do with her breathing. Does your brain need to tell your lungs to breath? I always thought breath was automatic buty I do know. I am going to have reserch this more to understand if there are limitations on how or what parts of the body it can cause problems with. Does anybody know?
Apraxia is an early feature in the visual variant of Alzheimer's which Jeff has, so I've been seeing it for years. Seems natural though, that when a "textbook" Alzheimer person (as if there were such a thing) reaches the late stages, there would be widespread enough damage that this would occur.
jim i do b elieve the brain stem does regulate breathing, ie specially dont quote me but i think the medulla. and like all things AD the brain will control breathing, digestion swallowing etc. when the 'signals' become lost from the brain to another organ we can expect things to start to slow or shut down. its why so many of us have issue with incontinence as well. brain signals to bladder doesnt work anymore. i am sorry to hear your wife has been in the hospital. i hope shes ok and its temporary. divvi
JimB..I don't know myself how I made it through this, and I an say that I understand the feelings you have while she is sleeping...I cried buckets, and always when I was alone. Yes, in the shower, tears flowed as much as the shower head. I would often go outside and just let loose. My pain was amplified by having my two kids here taking care of her. I had to watch them lose their mom, and that amplified the pain. So JimB, it is OK to cry....if you did not, you would not be a caregiver....It hurts like heck...and it is no reflection of any deficiency on your part, but a true expression of love and compassion. I am sad to hear that you had to bring Kathryn to the hospital. I personally feel that alzheimer's affects every part of a human body, and since the brain controls every function, it should not be a surprise to discover that it also can affect breathing. It can affect motion, sensory issues, swallowing, bladder and bowel control, heart rates, bp, smell, taste, etc. Since there can be so much variance in what neurons misfire, and different parts of the brain are affected more seriously, it seems to me that there is no doubt that each individual has different areas of decline. After studying her autopsy, I realized that her decline was directly related to the damage being caused by her disease, and the results clearly show and explain why she had problems in certain areas. All I can say Jim is love her more than ever. JimB..breathing is not really automatic....your blood circulates and brings oxygen thru the blood cells, and when you requre more air, the brain reacts, and it causes you to take more rapid breaths , deeper breaths, and your heart speeds up accordingly. All this is controlled by the brain....so when the brain suffers damage (ALZ), it naturally is going to affect some area of the body, and it could be anywhere...emotions, heart, bladders, lungs, movement, eyes, etc.....If you think of it as a computer that it is in your car, you will realize that it controls combustion, fuel consumption, transmissions, carburetor or fuel injectors, etc....and when it goes wrong, then anything could be affected...hard starting, stalling, poor gas mileage, rough idel, backfiring, misfiring, etc. Dumb analogy because you can replace the car's computer but you sure cannot replace a brain.... Dang...I hate alzheimer's
I am so sorry to hear about another decline in Kathryn. My husband is also in the late stages and experiencing all the 'A's'. Please watch her closely. They can often have a down turn in a hospital and many of the nurses and doctors don't know how to work with those who have this disease. Arms around you Jim.
My LO couldn't remember to hold her head up the last few months,so sad to watch the last few months,I feel for all of the spouses that havn't "joined the club" yet,as for tears its been a cpl weeks an I went to a family friends funeral yesterday an when they started singing Amazing Grace I lost it,I suspect it won't be the last time that happens
JimB, my husband has all of the A's. He was diagnosed over 3 years ago and had signs about 5 years before that. Oddly enough, it affected his speech first. It started with difficulty speaking and has now reached the point where he can hardly speak at all. He cannot carry on any conversation at all and usually just blurts something out. Still love to hear whatever he has to say. I will not permit any more testing that will not benefit him especially if he has to be sedated. Tests at this stage are pointless and he suffers so from being sedated. After his first seizure and a trip to the ER April 2011, he was sedated so heavily that he never recovered. No more CT scans, no more MRI's. He has reached the point where less is better...less medicine, less testing, less disruption in his life as he lives it. I guess I am letting God take charge and I will just assist by taking care of him and letting him know that I love him no matter what.
got some good news today. Kathryn's heart is ok and I got to bring her home. In the end the doctors determined that everything was the result of a severe anxiety attack. I am hating the word SEVERE now. Apparently easily confused with a heart attack I guess. At least it was by me. She was having trouble breathing and was tapping her chest but was unable to tell me what she was feeling. I asked her if she was having pain in the chest and she said no. I asked if her lungs hurt and again no. I then asked her if she felt great discomfort or tightness in her chest and she nodded yes. The problem is she could just as easily meant her lungs or breathing. There was no way to know.
I also learned something which I guess I had to experience first hand to really understand. They wanted to give her a stress test and did try to. I asked to stay with her which they allowed. They put her on a little table very narrow, put her hands over her head and told her to keep them there (that went well, not), next they lowered this big white thing over her and said this would only take 17 minutes. Even with both me and Darlene there holding her hands as gently as we could this could not be done.
They said we are going to wait a little while and give her a chance to calm down. I told them nope what you are going to do is get her back in her bed take her back to her room and wait until I get back and then I will let you know what you are going to do.
I called Kathryn's neurologist office and left a message letting them know I was on my way there and needed to talk to her doctor a few minutes that it was important. Kathryn neurologist called back with in minutes. I pulled over to the side of the road and told her what was happening and that I was not sure I doing the right thing putting Kathryn through these test. We talked a few more minutes and she told me to do two things.
1. Pick up a copy of Kathryn's living will for the doctors to place in their records so they can explain why they stopped the test.
2. Go back and stay with Kathryn and she would take care of talking to the doctor's at the hospital.
I stopped by our attorney's office on the way back to the hospital and asked for the living will and he made me certified copies of the living will, Designation of health care surrogate and her Durable Power of Attorney just in case and told me if there was any problem to call him and he would come to the hospital and assist.
It turned out I didn't need any. When I got back the doctor was waiting for me in Kathryn's room and said that all testing was stopped and he would be happy to go over any test with me prior to them being done and would follow my wishes. He said that he had talked with her Neurologist and agreed that we shouldn't be putting her through this. He did recommend that he do an eckogram and explained how it would be dome and we did do it. She made it through it with no problem. Had it been another minute os longer she wouldn't have.
got some bad news too. Kathryn's doctor said one other thing also. That it was time have her evaluated by Hospice and begin comfort treatment. I really didn't want to hear this but I guess this is what it took to make me see it. Hospice had already asked me to have her doctor request it and I just couldn't ask for it before.
JimB sometimes facing and admitting it's time for the next change in your Caregiving is the biggest, ardest step. Ithink you'll find having Hospice come aboard is going to be a big help- and a wonderful support for you. I found it to bea wonderful backup, because I didn't haveto figure problems out on my own.
Jim...glad to hear Kathryn didn't have to stay at the hospital. That had to be a very frightening time for her. She probably couldn't figure out what was going on. My heart goes out to both of you. Hospice will be a blessing. I'm sure most of us have been waiting for you to tell what happend and we really appreciate you taking the time to do so. Remember, we are all family here. You do such a great job of explaining exactly what is going on.
Jim, I am glad for the good news and to hear that Kathryn was able to come home. I am also saddened to hear of her decline and my heart aches for you. I hope hospice will bring you both comfort.
Thanks all, I am going to have Hospice do the evaluation. However I am hoping they will say she really isn't at that point yet. It doesn't look good right now. Since I got her home she has continued to have these anxiety attacks if that is what they are. I am going to call our primary doctor on Monday and get her a complete physical just to make sure there is nothing else going on.
If Hospice does say it is time they should be involved I will allow them to start taking part in Kathryn's care. I have to do what is right by Kathryn and that means providing her the very best care possible. The problem with them saying it is it means I will have to face what is coming and I have avoided that up to now.
I have learned a lot about Alzheimer's and I do know how it ends but knowing and accepting are two different things. I have up to now been pretty successful in denying it.
Jim, hearing our loved ones should be evaluated for Hospice, is never easy. Like you, it made me face what was to come, much sooner than I was ready to. I have learned here that Hospice doesn't always mean the end being near, some have been on it for years and year...and that it isn't always about end of life, but better quality of life.
I think it is a good idea to have her evaluated by her own doctor. They are familiar with your DW and can better judge what might be the problem. Lynn too at one point had anxiety, they gave him lexapro. It really did help ease his troubled mind. I know there are many other choices out there. I hope you are able to find the right cocktail to help your DW.
Phranque if you read this...sorry to hijack this thread Jim...Phranque could I use your explanation above to keep in my diary of Alzheimers, I can omit , or keep the moniker. Such a great explanation. Mahalo, thanks, Patty
Coco- Anything I post here is available for you to use. and feel free to use it anyway you please. I can always claim that someone hacked my computer and posted something that made sense....