How do I determine if mom is now entering into last stage Dementia?

This decline is so hard to watch in our parents. I'd say that unless the doctor has another reason (medications that may be changed or something) that it sounds as though your mom is entering last stages (swallowing is one thing that goes). Keep telling her you love her and give her attention even if she doesn't seem to respond. On some level she knows you are you and loving her. You'll never regret this, even if she truly doesn't respond.
Take care of yourself, too.
Carol

I have watched my mom's gradual decline for the last 3 .5 years after having a TIA. I suspect she had beginnings of dementia earlier than that, but she seemed to be functioning fairly well. Is your mom on any medications for Alzheimers, such as Aricept and Namenda or Excelon? One of these or both of these meds can possibly slow down her decline. You should decide if you want to treat her with these meds. If she is unable to eat and know what to do with the food in her mouth, she may not be getting enough calories which could be leading to more sleep, lethargy and speed up her decline. This IS the normal process of later stage dementia. You can choose to supplement her food intake with Ensure plus, Boost Plus (350 calories day), 4 x day if she isn't able to take in solid food. The longer you prolong her nutritional needs, the longer she will survive, but to what end. You have some decisions to make concerning how much you are going to supplement her food intake. Also, please, please think about whether you would insert a feeding tube in her PEG line if she refuses to eat. I was not prepared for this decision when the time came for my mom. I did not accept or recognize that she was at the end of her life, even though she was frail, totally dependent on a caregiver for everything, walked with walker with great assistance. One day she just refused taking anything orally. I was so afraid that by not taking in water, and her medication, she would die. I did not recognize that it was her way, and the disease process of shutting down. I put a feeding tube in mom, she had no living will. She is still alive 8 months later. She has no quality of life, has 24 hour care in her own home, recognizes me, she is not happy and wants to die. So, your mom can stay in her home. She may refuse to walk, and become very heavy to transport or even move to a wheelchair without two people. You cannot predict how long your mom has to live. You have to make decisions as to what interventions You are going to do to prolong her life. This forum can be of help and research for yourself on internet last stages of dying, and get info. God Bless.

There comes a time that you have to respect the patient's wishes even thought it may not seem the right one for the caregiver. Alzheimer patients are still human beings even though they can't think for themselves at later stages. But if it gets to the point that the patient does not want to take anything oraly, it is the person and the body telling you, it wants to finish. You can't force anyone to live against their will if their body is giving in and is ready. You even said it yourself, "there is no quality of life". Isn't quality of life more important than quantity? I know there is a fine line between love and greed. There are books out there that will help you understand that when its time to go, let go. I would never take it to the extreme of making mom live against her will. If she is yearning to pass, and I am the one forcing stuff down her throat to keep her alive, I am not being respectful of who they are and what they want. You have to give these people respect. Once an Alzheimer's patient refuses to eat, yes it is very close to the end if not the end. It would be time to take her to a hospice at that point so she can die with no pain.

I too am going through the advanced stages of Dementia with my Dad..and it has now gone from Advanced to Severe as he has stopped eating solids. He will drink liquids, but again, refuses all solids. While they're even giving him Power Shakes filled with plenty of nutrients, he has gone from 145 lbs to 128 in just a few months.

He talks little, no longer smiles, etc. I visit him at least three times a week and do everything I can to make sure he's getting the correct care. Several months ago he started to show small amounts of blood in his urine, but then it went away. A few months later it got more severe; blood tests showing he had a UTI.

After giving him medication, my hopes were that after he felt a bit better, he'd start eating again, but he still refuses solid food. He's able to swallow but no longer wants solid food. He'll drink all sorts of fluids, including his Power Shakes, however, that's not enough for his body to live on as he has already lost much of his muscle mass and he's skin and bones.

This is soo very difficult to watch, as he's not in any pain, but he's just wasting away to nothing. I spent this afternoon just sitting on the side of his bed talking about the old days and how much I loved him. He nodded more than he has in a long time when I brought up all the things he'd done for me; how he's always been there for me, and what a great daddy he is. I brought up all the fun times we've had, both he and I; along with our family.

He remembered it all as he continued to nod again like he hasn't in a very long time. It's difficult to talk, but I asked him if he could say hi. He did that..but in a whisper. I asked if he could say I love you..and he tried, but just closed his eyes in frustration.

I just said, "I know Daddy..you don't have to say it out loud..just remember that I'll always be your little girl no matter where you are.."

When my husband and I got engaged, my dad pulled my fiance aside and said, "You can marry her on one condition; she's on loan to you as she'll always be my little girl. If you can handle that..you have my blessing"; and on our wedding day, as we waited to walk down the aisle, he told me, "I'll walk you down the aisle, but I'll never give you away as you'll always be my little girl; and "my daughts". I cried all the way down the aisle to the song by Elvis, "I Can't Help Falling in Love With You" and my daddy sang it all the way.

He's such an amazing man and my hero. It's so difficult to see him going through horrible dementia as he just wastes away to nothing. Again, I talk to him almost every day letting him know how much I love him and bring up old memories as those are the ones he remembers. These are special times together that nobody can ever take away from my daddy and I..as I have to take it in stride that one day soon he will go to heaven to be with my mom.

It's horribly hard as I've been in denial for soo very long regarding his dementia. He has had peaks and valleys throughout it where there were times he was completely out of it; and then days where he'd snap out of it and carry on complete conversations with me. This has gone on for three years since he's been in a nursing facility; as he's amazed staff with his comebacks.

I've never known a man as brave as my dad has been as he's fought through a stroke, brain surgery for a subdural hematoma where he had to learn to walk and talk all over again (and he did!!), and now dementia. He's such a fighter but I can see him getting soo very tired. However, he seems so very sad.

I talked with him about that today also. I asked if he missed Mom (he's missed her since she passed away from cancer 12 years ago and soo wants to be with her); and he shook his head, "Yes"; I then asked him if he was sticking around to be with me..and he shook his head, "Yes" again. I told him that I'd miss him, yet he'd be in my heart and with me wherever I go..and told him that if he wants to go be with Mom..I'm okay with it. He shook his head, "No", so I asked him if he wanted to stay..and he said, "Yes..with you."

My dad and I have such an incredible relationship that's been built since I was born. I've been a Daddy's Girl ever since and he's been the best dad anyone could ask for. I can't remember a time when he wasn't there..from teaching me how to ride a bike; throw a good hard baseball when he played catch with me; the "freethrow" queen in basketball as he taught me how to throw it high and "swish" through the basketball hoop he put on our garage. He taught me what to look for in buying a car, maintained all of them, etc. He was there when I my Cocker Spaniel suffered from Glaucoma and went to every single appt with me. He was there when my Golden Retriever had to be put down and dug the hole for me in my backyard.

He was there when I was going through my divorce and would often talk with me for hours on the phone until I could finally fall asleep..

And we were there for each other when my mom passed away. That night we sat up all night talking about the old times until the wee hours of the morning. We were there for each other when we buried my mom's ashes; and I was there for him when he refused to get out of his pajamas while he sat in his recliner and cried and cried.

I was the one that finally opened the curtains and told him it was time to get dressed; we were going out for a beer. Took a bit but he finally got dressed. We went for a really nice drive as he pointed all the places he remembered. It was a really nice day and we did stop for a beer...and a shot of whiskey. As he took it all in he said, "Good Lord, that tastes good!!!"

He started talking about good memories of my mom and how they'd met in a ballroom. His date had stood him up, but he still decided to go to the Policeman's Ball without her. He saw my mom from across the room and decided to ask her to dance; thinking he'd make this other girl jealous (as she was there with another guy), yet the more he talked to my mom..the more he liked her. My mom mentioned that she especially liked his tie (which we still have)..so they started to date.

He told me that there was the New Years Eve night when he was supposed to take my mom out..and he'd fallen asleep and stood her up. He felt awful about it when he woke up in the morning and being so early, he couldn't call her. When he finally did, she just said, "Oh, that's alright.." and she wasn't a bit angry about it.

That was the time he knew that he wanted to marry her. Shortly after that he brought her a ring and not really knowing exactly how to ask her, they were sitting in his car and he said, "I have something for you.." and he actually tossed the box to her. When we caught it and opened it..she was speechless. He said, "Well do you want it or not??"

What an idiot my dad was..lol!! My mom said, "Well yeah.." What a proposal!!

Anyway, 40 years into their marriage, my mom came down with Breast Cancer that had metatasized to her bones. They gave her two years, but since her bones were infested with in..she had a mere six weeks.

The hardest thing about all this was that hospital/Hospice staff treated us like we'd been dealing with this for many years instead of a few short six weeks. They naturally thought that our family was in complete denial (and we were at the time); without even looking further back in my mom's file to see how recent her diagnosis was.

As they kept pushing her diagnosis in her face (even her regular doctor came into the room and told her she had cancer. My mom's reply was, "Well we've all gotta go sometime.." so her MD said, "No...I want you to say out loud, "I have cancer.." and when my mom refused, she pushed further and said, "You need to realize that you have cancer and say it out loud..", so Mom rolled her eyes and said, "Okay..I have cancer.." Her MD seemed to actually be put off that my mom didn't take it more seriously.

Test after test..she was in the hospital for three weeks until they found that her bones were infested with it and it was entering her lungs. Mom went through radiation treatments, severe nose bleeds from the Coumadin she was taking, horrible treatment from Hospice nurses that tried to put it in her head that she was going to die; and the worst was when we had some doctor come in my mom's hospital room once when our family was all present. When Mom asked how much time she had left, he just threw out the words, "I don't know..two days..two weeks..two months.."

Horrible bedside manner in my families opinion and my dad kicked him right out of the room. I don't think I've ever seen my dad so angry.

It was pathetic how our family was treated the entire time my mom was in the hospital. When we walked down the hallways, we could see staff's reaction to test results we didn't know anything about yet, as they looked at us with their heads cocked in sympathy. Yet when Mom was in pain..they took forever to get her pain meds. When she needed a certain test where she had to drink all this Barium, and she couldn't drink it all..as her bladder filled up from it and it made her sick to her stomach; this mean nurse came in and said she was going to WATCH her take it to make sure she took it all.

Dad kicked her out of the room shortly after that and told her that he wasn't going to put up with staff that treated my mom like that..and what good was this test going to do when we already knew she was sick.

We cared for my mom at our home and put a hospital bed in our living room, along with a commode. My dad took care of her day in and day out. She got bad bedsores and my dad took care of every single one of them. He fed her when she could no longer feed herself and changed her bedding daily. There was nothing Dad wouldn't do for Mom and when she finally passed away six weeks TO THE DAY that the jerk of an MD blabbed out her prognosis..Dad started out just plain angry.

That prognosis stuck in my mom's head for the duration of her illness and she kept that date in her mind; often telling us that she didn't want to die; while continuing to concentrate on that two month date. That's the date she passed away.

THAT was so VERY hard on my dad..not only losing the love of his life, but being so angry with the MD that put that time in her head. Dad was very angry for a long time and then he was soo very sad that he didn't even get dressed; yet sit in his recliner with the shades pulled, just crying his eyes out daily.

THEN...regarding my dad..we visited with his regular doctor's NP several months ago. While I never asked for a prognosis, she blabbed out that he had about six months. My dad was sitting in his wheelchair and his eyes got as big as saucers!! What right did she have to just blab out a time frame unless I, as Power of Attorney, asked for one. Dad no longer sees her...but this month is the sixth month...and Dad is giving up.

While he pushed and pushed to get better all the months before...I truly believe that when an MD blabs out a prognosis in front of a patient..it somehow puts it in their head and that's the month they start declining.

Maybe I'm wrong, but it happened to my mom..and now it's happening to my dad. I wonder how he'd be if she said he had two years to live??

It's very difficult to say. Our family has been very blessed that Dad's dementia has been so slow in advancing..but as he's gotten to Advanced Dementia..it's grows more severe day by day.

It's been so very hard to see it progress as most days he knows me; and other days he just seems to stare into space, like he's in another world. I've been fairly successful in connecting with him during those times; yet it takes time and patience.

Again, since I've been with Dad from the beginning of his diagnosis with Dementia; I just accept him as he continues to decline. I wish he could stick around forever, but seeing him a shell of the person he used to be, it would be selfish of me to ask him to stay...and he will until his body just won't allow him to anymore. At one earlier point in his dementia when we almost lost him to sepsis; he told me he had new shoes to wear out and wasn't going anywhere. Even now when he can't speak much anymore..his eyes look at me with sadness. I asked him today if he was sad..and he nodded yes. I asked him if he missed Mom and he nodded yes. Then he reached for my hand and held it tight. I told him that I was going to miss him too..and he shook his head no..then he touched my heart with his hand and said, "Forever"

I told him that if he needs to go, he should, but again he shook his head no. I didn't know what he meant and said, "You can go Daddy..really..I'll be okay" and again he shook his head no. Knowing him and the hero he is..battling dementia like he is..he'll hold on to the very end.

I added today that we've always called him, "Grandpa Rigger" for a reason as he could fix anything. If he couldn't fix it, it was junk. I told him that he can't fix himself anymore and it's okay to go be with Mom..but again..he just shook his head and grabbed my hand as tight as he could as if to say, "I'm not going anywhere.." but at the same time he closed his eyes as if to say he was sorry he may need to go when God calls him.

Shortly after that, he fell asleep as I sang to him one of his favorite songs and told him I'd see him soon. One day he'll be gone, but the time spent with him will be invaluable to me.

I will sooo miss him!!

This post is super long and I thank those that took the time to read it. Thanks also for giving me the chance to unload. God Bless.

This is very hard, and very sad. I can't help but comment that no one who can walk should be required to just sit and no one who does not need diapers should be required to have them. It sounds like a real "cookie-cutter" type of program they had going, and is far from best practice! Some places don't seem to think it matters, and if there is any choice (I know sometimes there isn't) its best to find soemwhere that does things differently, focusing on maxiizing everyone's quality of life and activity level as much as possible.

And...this is even harder...but in most cases, long-term tube feeding is non-recommended for advanced dementia. For acute stroke, for some other swallowing problems, yes, its a great thing, but overall the impact on quality and even quantity of life in most studies for people with dementia has been either nil or negative. This may be because restraints are more often required, and the more time spent restrained or in bed the more risk of sores, pneumonia, and sepsis. Though I also think the doc is right about DNR for someone who is so frail and ill like Lily's mum, but also, it should be a family decision and not implied that they would not respect your wishes if you requested otherwise. God bless...

Dear Yellow Fever,
I know what you are going through. It is difficult having the responsibility of your mom's life in your hands. When I told the docs to feed her with a feeding tube, it was out of guilt that all of a sudden I would give up on saving mom. I had worked so hard to keep her safe and in her own home. I couldn't not feed her.
But,looking back, it did nothing to improve her life. I have had many quality moments with my mom these eight months that I would not have had, but, looking back I would not do that again. Still today, I will be in the same situation of deciding to intervene if she gets sick, feeding tube comes out, whatever. I did get a DNR in place now. Somehow you have to talk to your friends and family and feel you are doing the best you can with mom, and prolonging her life just for you to have more quality time, if that, would not be in her best interest. You and I will always feel guilt and question if we are doing the right thing, feeding her artifically, or whatever. In the long run, it is God's decision when he calls for them, and we really have to accept that when it is her time to let her go.
I hope you stay strong and know that many of us are experiencing the same gut wrenching decisions. Take care, Helen

I was looking for a thread for this last stage of dementia. Mom (94) has all the symptoms of stage 6 except fecal incontinence and now is starting to have stage 7 symptoms. She seems to have gone down hill fairly quickly within this last month.
This week I've seen difficulty with swallowing thin liquids. She'll hold them in her mouth like she's trying to think of how to swallow. Occasionally she'll cough immediately afterwards, (Due to some trickling down into the trachea (windpipe). I'll be buying some "Thick-It" powder this week to make all liquids like a nectar consistency and easier to swallow.

Words are also tripping her up more. She can't think of them and will be talking along (non-stop most days) and then hit a speed bump, "ugh, ugh, well, ugh", until I can fill in the word. Then she closes her eyes in disgust and frustration and holds her head in her hand. I try to bring up the positive that we got the word and I got the meaning of what she wanted to tell me. By then the thought is long gone.

She walks with assistance and a walker but has been known to sneak off the couch and get to the bathroom but she can't navigate the toilet, so she pees all over the floor-and then denies it!

Mother doesn't do much smiling (never has, she hasn't been a positive, upbeat person, so that's nothing new for her). But I wish everything that comes out of her mouth wouldn't be negative. It's very difficult caring for a demanding, unhappy, miserable woman. Her attitude rubs off on you and it's hard not to be super frustrated and angry yourself. Nothing is right (in her eyes) and she is not being well taken care of. I, on the other hand, feel I have given the best one on one care I can. I have to remember, as she's barking orders at me, this woman has no brain and (hopefully) doesn't mean to be ordering me around like her personal maid.
She says daily that she wants to die and why has she lived this long. I tell her to take it up with the God. She takes an anti depressant and an anti anxiety pill daily.

I can't imagine her getting to the point of no talking, although the information says that stage will come next. In one way I welcome it, as her questions are incessant, often asking each question 50+ times a day. I will cherish the silence. But it also will be frustrating not having words as our communication tool.

As a nurse, I'm not scared of bedsores, bed baths, repositioning in bed, hand feeding (she's practically a feeder right now so no difference there) and changing a diaper in bed. It is sometimes easier than trying to navigate the walker to the toilet.

My dad died of a massive stroke. He had a feeding tube in but the food wouldn't absorb. Hospice explained the process and we quit the tube. I won't give her one. But It's hard standing by when they don't eat or drink anything. She is definitely a DNR.

This disease has robbed her (and me) of any quality time of life. What I would very much appreciate is if the Good Lord would send an angel to guide her to Heaven BEFORE she has to fall even further into this undignified existence. My daily prayer is for God's mercy to let her go in her sleep, without pain, without having to be reduced to a vegetable (stage 7e). Haven't all of us suffered long enough?

One website said that the patient has about 4 months left to live after the ability to walk is gone (stage 7c). I guess that's what I'll be watching out for in case my prayer is rejected.

God forbid that I get Alzheimer's, as I will only have my dear hubby to help me. (Son and I don't talk and I have no siblings.) If he should die before me, and I still have some of my faculties about me, I'll walk into a pharmacy (here in Mexico) and buy a months worth of sleeping pills and die with some of my dignity intact. I won't be a babbling, pooping, vegetable if I have anything to say about it!

This disease is just wrong.

My mum has been in a home for nearly 3 years, she lost the ablitiy to walk because they are made to sit down all the time. yet she used to wander when she went in, They put her in 'pads' large nappy or diaper to 'keep her dignity' yet she wasn't wetting herself but you could try these on your mother, it is no different to changing a child but you do it with them standing up.
You the carer are telling her what she can and can't do so she is going to turn against you. Been there myself.
My mother is now in the last stages of Vascular Dementia, I don't know how she is hanging on. Last week she was admitted to hospital because she had vomitted and some had gone into her lungs as she couldn't clear her throat, she has been having her food pureed for some time now.
My mum has been put on a sugar and salt drip for the past 5 days and tomorrow they are going to try to put a tube down her nose to her stomach to give her some form of nutrition. As she now cannot swallow properly without liquid going into her lungs. Yesterday I went into the hospital to find she had conjunctivitis in her eyes. Thrush in her mouth and inside her nose is white? from the oxygen she is having all the time. I have to face facts I don't think my mother is going to come out of hospital alive. In fact yesterday after seeing her I came home and cried but today she seems brighter.To me this is the final stage of Vascular dementia when she can't swallow and has to rely on a drip. When she was admitted last week the doctor told me. ''What ever you say I will not change my decision, Should your mother stop breathing we will not resuscitate her as it would mean needles in her neck and groin, heart massage or pumping on her chest and it would only prolong her agony for maybe it to happen again shortly afterwards'' So I agreed my mother is 85 I love her dearly and have been there at the hospital twice a day, There is only my son and myself to visit her so we do have to come home to rest or I would be there all the time.

All of the posts have been very informative and helpful. My dad has Lewy Body Dementia, and total body atrophy. He is 83. Mom is 82 and also has dementia. These choices are hard to think about. I had to ok a tube insertion for dad through the nose into his stomach because he was having a hard time swallowing in the hospital. He was then fed pureed food in the NH. He is home and is now capable of eating (with help) and swallowing ok. The possibility of having to go the tubal feeding route again is hard to deal with, but the reality is that it might be a necessity that can help as it did for dad. However if the total ability to be cognitive of anything around them has ceased, I would decline that. We went through this with my father in law and he was angry that the family did not accept his choice to let go. He kept saying it was what he wanted, he was tired and ready, we kept trying to encourage him to eat etc, but have since realized that when they are ready, they know and want the family to let them go rather than prolong their discomfort. Is it selfish to encourage someone to hang on for our sake, or is it unselfish to allow them to go in peace knowing they have the love and suppport of family. We chose the latter for father in law and have peace with that choice. Now that my sister and I are faced with this inevitibility with mom and dad, as hard as it will be, we will respect their choice to "go home to the Lord".

I have a ex-husband that is in a home he is 61 with dementia. Although we are no longer married I care for him a great deal and still visit' and see him. He appears to be losing a lot of weight rapidly and not wanting to get up. He is declining so fast and its so hard. I feel like he is tired and so is body. Can the later stages go on for along time?. This is all so hard for everyone. There is very little family. I just hope and pray that he is not sad, I know that sounds silly but it breaks my heart that he is struggling so. Anyone have any advice for a woman that was married to this man for 26 years and wants the struggle and pain to stop for him.
Thanks