gABGAN , sometimes these doctor amaze me.As bad as my aunt is nothing stands in the way of treating an infection.Compassion and the right to die in peace is what we want for them.I have to be careful that my aunt does not become impacted.Also the colon could rupture and we would have problems.I think, if your doctors says so , you can get continued health aides as mom is unable to do for her self.She can be evaluated by those who deliver the hospice services.I called the service first and then called our doctor.I knew she would agree to my having hospice as she knows my circumstances and my aunts problems.We all learn with each new experience.That is all we can hope for.You are doing a fine hob with a loving heart.

Thanks everyone for all your comments. I can see I have a lot to learn still....I do have home health just now because mom was in hospital with bowel impaction...I did not see that one coming since she was having stools every three days and eating I thought she was ok in that area...but seems she was holding back on me ha ha.
Mom will soon run out of home health time..it is only good for nine weeks for each episode. She had them for nine weeks previoulsy for her heel that got a rather nasty sore while she was at my sisters.
Mom is in the seventh stage according to the home health assesment. But we all know that these stages last years sometimes. No one has offered pallative or respite care...I am not sure if Alz alone will qualify one for that without a medical event too. Unless she is in last six months and who knows???
Dr is as confused as I am as to her stage. He says all her vitals are great...I am doing a good job of caring for her and that what will be will be. He suggest next time she has infection we don't treat it. But I do not want her to die with infection just because I can. She almost had or did have sepsis from the bowel inpaction. We filled her full of Antibs and I am glad...she was so sick and I do not want her in pain.
Many years ago she had told us she does not want to be kept alive on tubes but I do not think she expected us to just let her die.
Anyway..I do as someone suggested..I love and enjoy her and hug and kiss her a lot. It is for my own self that I do this...but she seems to enjoy it also. I dread the day I will have only memories to hug..but when it comes I will know we did all we could to give her good care and that will ease the pain.
Thanks again for all the support....that is really why I come here. You are all great!!!

Mom's Buddy is correct when she says "individuals do not necessarily "fit a mold" as prescribed by clinical definitions". The stages are good to be familar with as they give you an idea of progression and what is yet to come. However most LOs do not go through the stages as they are written. Many times an AD LO can show syumptoms of several stages or go back and forth in the stages.

Reviewing the medical stages I can see that my MIL does fit into moderately severe..it is tough to see what the next stage may bring. tis our reality of this progressive disease. she needs help wlaking and a wheelchair will certainly be in her future - so will milkshakes and softer food. Has anyone ever devloped a caregiver stress chart -- some days I would be in severe stage...all we can do is our best giving and caring with dignity and compassion...

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.

MomsBuddy, what a beautiful ending to your post

Hello Gabgan... Sending hugs to you and to your mother during this latest period of adjustment! What a fighting spirit both of you have. I know there isn't a LOT of specific information about the final stages or how long they last but you might want to speak to your local hospice organization to get their view. Generally speaking, these groups have handled many such cases and can give you additional guidance even if you don't take advantage of their comprehensive services. I would hope you could take advantage of their in-home services because I understand how draining this caregiving load is, especially with everything else you are handling at the same time.

quote:

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Originally posted by Moms_Buddy:
Gabgan, I can only echo a lot of what has been said... Stages? We don' need no steenkin' stages!!! I have read through that stuff and sometimes it fits and sometimes it doesn't.

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In closing, I would like to mention the reason we DO need the stages of any progressive and/or neurological disease lettered out for caregivers and treating medical teams is a simple one... recognition of unusual progression can mean something else is wrong (for example, onset of a UTI or bowel obstruction can cause excessive agitation). From the earliest stagest, seizures are often treatable and can be controlled and/or minimized with the appropriate use of medication (for example, my husband has nocturnal myoclonic jerking which is easily managed with the use of Klonopin). Not to be forgotten, is the specific value of knowing the progressive nature of AD for the person who is effected... it can encourage them to be a part of developing their future medical and financial planning while they can... key elements for everyone concerned.

Sending hope and a sincere wish that each of us enjoy a safe and loving Thanksgiving.
Joan Marie

Gabgan, I can only echo a lot of what has been said... Stages? We don' need no steenkin' stages!!! I have read through that stuff and sometimes it fits and sometimes it doesn't. As Cathy described, my mom went through a period of sleepiness, etc. She went through a thing where she would hide her right hand under the covers as if it were useless (it wasn't) - I called it her Hideaway hand... Sometimes she is aware of BMs and sometimes not. She got mad at her doc a few days ago in the hospital when she was examining mom's behind for breakdowns and mom hadda BM and the doc said this out loud. Mom told me she most certainly did NOT have a BM; that she guess she KNOWS when she has one and hasn't had one in days!! She is not fond of her doctor because she is always asking her questions like what year is is, who am I, etc. but the BM accusation may be the straw that breaks the camel's back in that relationship. I wince sometimes at how insensitive the pros are when dealing with her. She hates the evaluation games. It only takes a short normal (?!) conversation with her to tell where she is in space and time (...adrift...). She knows she is messed up, so pointing out things like bowel movements to her are embarrassing, worrisome and demeaning to her. She is also on a mini-high right now and getting to the irritable stage... Most of the time she knows me, but will ask me who my son's mother is... Mom startles easily also... Most of the time she swallows well, but she frequently forgets to eat especially if she is reading her newspaper. Her appetite goes up and down; sometimes she eats robustly, other times she even refuses ice cream. I have never noticed any sort of seizures, but it would not surprise me...
I have no advice to give because I am in personally uncharted territory. I hear similarities and differences from the rest of you... the "stage charts" don't add up much, so I am just winging it. Once, seems like a hundred years ago, when we were in the hospital for one of the first UTIs, the doc put us in with another of her AD patients. She was entirely ruined - no longer able to swallow or speak or move or much of anything. She lived at home with her DIL who took her in while caring for her late husband, the woman's son. I do not know if she has passed yet... people can go on a very long time like that. I felt fortunate to have met those two ladies... Maybe mom will end up there, or not... Maybe she will die in her sleep tonight... or not... I do not know and no one can tell me. I am not even sure I wanna know - I am just gonna keep on keepin' on until the end of the line or until I am no longer able to care for mom. I used to read the research voraciously - I don't any more. Mom is 86 years old. There is no drug out there that will fix her or restore her to any reasonable quality of life. I guess sooner or later, she will forget my name along with all the others. That's the nature of this crappy disease. We just simply try to make each day as pleasant and comfortable as possible.
If I have any advice to you, it would be this: spoil her rotten. Love her with all your might. Treasure the sound of her voice, the softness of her cheek, the innocence of her sleep. Stages come and stages go, but when it's over, it's over.

when I re read the last symptoms , I again see that my mother had none of the symptoms.She was able to say when she had to go to the bathroom but was ignored.She was able to verbalize pain, was ignored.She new when a person was a threat to her.She said she would die if not taken from the place that is know as a CARE facility.She could have used the walker if they had taken the time.She could have eaten if they had called the orthodontists about her teeth.She would have responded to therapy if they had not waited until the day she was taken to the emergency room , which has always made me wonder what happen that very day.She was to be moved in 3 days.She new something was wrong with her hand, because they kept her in the wheel chair.She would use the other hands to move the afflicted hand.I would tell her exercises and she did them with no hesitation.I , my son , my daughter called all this to our attention with no results until the day something happened that we never knew the truth.My son says he has been emotionally affected by the lack of treatment and quality care he has witnessed in the hospitals and Nursing home.He gets so angry that he said if they had been men , he would have decked them , and he would

Gabgan, it will never hurt to try.Your doctor will be the swaying factor and he has nothing to loose by doing this.

Hi Gabgan,

This is the best chart i've found of the stages of alzhemier's and clinical assessment.

www.geriatric-resources.com/html/gds.html

Gabgan, your mom would probably qualify for some home health. Contact your doctor to see if he will make the referral. They will make the assessment if she is to the stage of needing hospice care.

This would give you more home support with visiting nurses, and also home health aids to do the bathing several times a week. It sure helped me at the end.

As far as food goes, towards the end Mom was living on milk shakes that I made with Ensure, a little soy protein, some ice cream or juice, flavorings about 5 times a day. Mom had problems remembering to chew, so we got to having creamy easy to swallow stuff, like mac and cheese or lots of soups. You can get Thick-It which you can add to liquids to make them easier to swallow and prevent choking.

Sharon

Grammy, just reading your words I can sense what you are feeling and going through.It is not easy and not easy for the afflicted.It is just plain sad to see those we love become less then they are because of a awful disease.4My aunt has no control and I have had day where I did not know where to begin cleaning her up.I have watch what she eats as it causes her to go more often and what a mess.She cannot eat anything high in acide or fat as it is to difficult for her system.She cannot eat anything grainy in the morning as it causes her to cough.I wake up each morning knowing she and my husband will have a soaked depends.This is a far cry from what you iagined life would be like.It is also frightening as the world of caregiving is out of control in all ways.My mother thought I was the devil, at times, her mother , her sister and sometimes my self.Amazing as all 3 of us have the same qualities about us.They had strong family ties, they lived good lives, and mother adored them.I knew she was calling me no matter what named she used.They continue to have a strong sense about certain people.She clings to you because she has this feeling of being safe and compfortable.Much like a child does when dealing with fear.These poor souls have to have so much fear witin.All they once knew has changed.My husbands has viewd me as the bad guy for so long.The aide told me the moment I am out of his sight he wants to know where I am.When I have a respite days he will sleep until I walk in and he hears my voice.He would never acknowledge the good job I do, but I do not need him or anyone to do that.I do some things well, somethings I do the best I can.When in doubt, I ask the nurses and come here to see how others deal with a situation.Many times the problem has to tun it's course.That happened with mother many times.My aunt is slipping physically and there is only so much I and the medical team can do.We try and that is all we have left.I encourage anyone who feels they are entitled to hospice to get it.I went in under palliative care and it continues since March .I would not continue if they were not with me.I cannot do all that is required, on my own, and maintain my sanity or physical strength.I do take Paxil which helps as I wake up each day with the anxiety that comes from all the day will bring.It also helps my stomach .I wish those outside our world would take the time to read the posts on this forum.Maybe they will get the human feeling to what all face, even the afflicted.So many hear the term and have no idea what it means .The sad part is that the only way they are given the peace then so need and deserve is through death.I was one who could never accept that.My doctor would tell me to look at the religious side.I told him I will never accept that death is the asnwer for another having physical and emotional peace.I know Death is part of life but it is the quality of life many experience that concerns me.I hear so many say well you take too good of care of them.I tell them what the H does that mean.I never compromise who I am no matter how hard the task ar hand becomes.My children , grand childre learn by my example.I always taught them to treat others as you want to be treated.Never allow your self to determine anothers worth because of them not being perfect or becoming ill.Do I wish I could do what I want when I want or , maybe do nothing, you bet.More and more .But I chose my patb and the alternative is not for me.When we have the professionals demand more for all the afflicted, then we will have better choices.I also have come to admire those who tried so hard and found they are unable to meet the demands.At least they tried.

Hi Gabgan and other caregivers - I know not where to categorize my MIL...in retrospect she has declined rapidly. My husband and I just keep taking up the slack on where she can longer do things. She is totally incontinent --- everyday is a BM. I come from a business background and have been put smack dab in the center of cleaning up multiple times a day.

My MIL no longer knows my name - she might say it here or there - but is infrrequent. the only name that stands out in her memory is Jeffrey - my husband, her first born son, her caregiver. She no longer knows her other three children - they are strangers to her - they do not come around. Despite not knowing my name - there is a genuine comfort level MIL has with me...we had a house full of people last night and she needed to be by my side.

The flow of jibber jabber nothing conversation is even declining. Her eyes seem empty. We have to give constant reminders on eating her plate of food. Caretaking for this disease is draining....I feel that I have aged 12 years in the last 4 of daily caregiving.

Her ex husband who divorced her after 30 years of marriage is remarried. He commented to me that she is getting worse that her medication must not be working. I had to emphasize that this is a progressive disease - she will never get better but will continually decline - there is no magic pill and there are no answers - there is just another 24 hours to care and bring dignity and compassion.

peace and grace

Ces, you have given a great response.You really do not know as all are different.I love the not looking a head that far.Grap as today and hope for tomorrow.That is what we do unsder most illnesses

Hi Gabgan, I'm sorry for your pain...

I've really never been one to pay much attention to the stages. I've always just felt my Mom is where she is. Each persons progression, or regression, if you will, is so individual. I know Mom is advanced if for no other reason than she's had AD for about 15 years.

In that time I've seen many behaviors develop, last for who knows how long, only to be replaced one day by something else. I wish this screaming stage would pass!!!

10% of people with AD will develop seizures, they can be obvious or very subtle. Mom's are very subtle. I've been called into a day care setting, (which has since kicked her out for acting like someone that has AD ) where the nurses were calling me because Mom was "acting out" on the floor. She was seizing. They just didn't know what they were looking at until I walked in and said, y'all, she's seizing. They changed their tune quickly that day. When you say your Mom seems to be having some kind of mini seizures, what is it that you see? A person with AD won't automatically be put on anti-seizure meds. The side effects can be very limiting versus the advantages. If they're obvious, outright tonic clonic seizures and keep happening, that's different. That group would likely be medicated. Mom isn't medicated. She may seize twice in a week, and not again for several months. So I don't have her on anything.

They will come to a point where they might forget how to swallow, or just need to be reminded to swallow. Sometimes I have to remind Mom, but I wouldn't say she has forgotten how yet. As to the teeth, they may be illfitting, especially if she's had a significant weight loss. Or, if she's already having a hard time making the connection that first food goes in the mouth, then you have to chew, then you have to swallow, maybe the teeth just distract her too much -- it's really hard to tell. Does she have any sores in her mouth that would make wearing them uncomfortable?

As I think about it, I went through a stage with Mom where she wasn't eating, hardly anything at all!! At the same time, she could sleep the clock around. But, that was about, hmmm, maybe 6 years ago?!? That stage lasted months, then just gradually subsided. Needless to say at the time I thought we were nearing the end. Especially with the sleeping, I just figured it was that many more brain cells that had died. Since that passed, though, she not only eats but has spent a lot of time where she'd eat anything and everything you'd put in front of her and look for more!!! She's not eating like crazy now, but will when offered. So you just never know what to expect next! You really don't! I know that may seem far from helpful, but it's just how things can be.

Mom has called me a lot of choice names over these years of hell! She knows who I am about 97% of the time. If I say what's my name, she'll say Cathy, usually. But, if she's calling out to me, 50% of the time she'll call "Mom". That doesn't strike me as odd any more because that's really the only thing she hears, is me calling her Mom. It's only the 2 of us so there's no one to call her by her name. Of course there are other times she looks right at me and says "where's Cath". She always seems to know the dog's name

I look at your post and my response and I don't think I've helped you at all.

I guess the thing is, just as many different people that there are here on this board, that many different type scenarios can be laid out. And these are the people that have lived every stage of this horrible disease with their LO. Many, sadly, have gone on beyond where you and I are with our Mom's. Other than The 36 Hour Day, which I think most of us held like a bible at one point or another, I really don't think ---- scratch that. Let me put it this way. You could probably write more information than you can find at this point.

But one thing you will find, and find it here, is as much support as anyone here can offer. With a lot of caring to back it up.

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

Cathy

Gabgan be very careful with the holding foo , choking ciuld occur.My mother did this in the nursing home, I would to if someone put garbage infront of me and had the nreve to call it food.

Gabgan, I wish I had information that would help you.On my mothers death certificate they gave cause as late dementia.That is because I could not afford the 4500 dollars for an autopsy.I do believe there is information in the information guide as part of this forum.One can never be sure when the end has or will come.I wish I had better answers for you.