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

Sorry to hear that you are going through this . Regarding your Mom experiencing the UTI. And having to take Antiobiotics is really sad . I had a very similar experience with my 86 year old mother . The Doctor was Giving her Antiobiotics for a period of 3 years and Her logic was that My mother clean herself from the back to the front that is why She gets infected . I did not Believe what She is saying . I took her a Specialist and they found out that my mother do not empty her Bladder and the Uron stays in her system for weeks and weeks that is the Source of the Infection . We start emptying the Uron and the UTI was stopped . The Dementia Medication make the Mussles week that will not work as before that is why the Uron stays there . The Antiobiotics will not help Dementia. Try this and make sure She does not have the same problem then you can work on the next issue .

yellow feever sorry to say you worked in a rotten home i am sure you did the right thing
i am trying to keep my mom out of a home she went in 3 times 1 in 2016 then 2 in 2017 the last one is a good home ..sort of ..no matter how they are they to me are bad i call them concentration camps my self there are homes like that got to really check them out good ..if it looks nice & if they are remodeling it then that is a good sign that it is good ...also go if shopping for one go sat & sunday both & see how many are working matter of fact go thru a week & see if short staff stay away they do not care much ...& walk all around if the halls smell lke urine go & never come back i mean if real strong kind of & do the weekends on that to ..

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 Grandmother is 100 and has Alzhimers she still walks up and down the stairs. Here is the problem, she sleeps all day then wants to get up at 11:00 pm to only go downstairs to put her head on the kitchen table to sleep. She talks about going home to see her parents. Hello they are dead. I do not want her to be put in a nursing home, but My mom and I need to rest, it does not bother my father he sleeps right through Hurricane Harvey and Irma. I really think putting her in a nursing home would be the chicken sh*t way out. Hmmm just weather this storm ... Thank God for Jack Daniels and cigarettes .

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.

Wow, God bless you for caring for your mom. I have my mom living with me and she can't walk, dress or feed herself anymore. After reading the above, I think I will call Hospice. It breaks my heart but I only get snippets of her these days. I will never regret getting her out of assisted living where she fell several times. I know in my heart that I have prolonged her life and given her more happiness.

Wow, God bless you for caring for your mom. I have my mom living with me and she can't walk, dress or feed herself anymore. After reading the above, I think I will call Hospice. It breaks my heart but I only get snippets of her these days. I will never regret getting her out of assisted living where she fell several times. I know in my heart that I have prolonged her life and given her more happiness.

My nan has dementia & parkinsons disease and there is something strange that happens to her. To start with she can be fine, then the next minute she starts to talk rubbish and starts to whimper like a baby.... This seems to last for 1-2 hours. After looking further into it, this whimpering usually starts after she has eaten her breakfast, lunch or tea. Has anyone else experienced this as the doctors don't seem to know what they are on about?

Judy, your mom's condition sounds a lot like mine before she began to decline quickly. When a person refuses to eat or drink, their body is shutting down and they say it is a painless process. Mom was in a nursing home and about a month before her passing, the nurses came to me and asked if we wanted her on comfort care (which is similar to hospice). That meant no life extending measures. At that point, she was in a lot of pain from a fractured pelvis. She was put on morphine and also a tranquilizer because she was so agitated and trying to get out of bed. About 2 weeks before she passed she barely ate or drank and spoke very little. She had bouts of energy and then would go back to mostly sleeping or slightly out of it. The last week she stopped eating completely and passed peacefully in the night on about the 5th day. Two days before, she asked me for chicken soup, but when we got soup she wouldn't eat it. I think it was just something that was in her dream mind at the time.
It sounds like your mother needs to be evaluated by a physician as to whether she should be in hospice care or at least needs some meds to keep her more comfortable. Hospice is wonderful support for patient and family and makes the passage painless and peaceful. Do you have a DNR on her? If she becomes unconscious or has some sort of attack, what are the aide's instructions? If she calls an ambulance, without a DNR, they will keep her alive artificially and take her to a hospital.

My mother is 93 and has advanced dementia and heart failure. She refuses to eat or take her medication and seems to be in pain, she won't and can't get out of bed, can
barely stand and is skin and bone. I am concerned we won't have her much longer.
SHe lives at home with a 24 hour aid, I just dont want my mom to suffer, it seems as though she has little quality of life and can barely talk and screams if you try to touch her. DOes she need to go to hospice or nursing home, I wish I knew what was best for her, she is declining more quickly now

My Mum is 92 and now in the later stages of Alzheimer's. Eleven months ago, due to a family crisis, Mum was placed in a nursing home with very caring staff. I really cannot complain about the care my Mum is receiving, it is top notch. Twice Mum has become close to her end and rallied but now it would seem that it is happening again. Mum finds it difficult to swallow food and drink and is becoming more adamant about refusing any sustenance or fluids. For several weeks we've noticed a change in breathing too. It can be quite scary at times but one that I'm now used to seeing. I have a horrible feeling that Mum's end is even closer this time. We (my Dad and myself) have already had several conversations about Mum's end of life care so we all know (to some extent) what is going to happen. I have been proactive and read many sites on the stages and what to look for. I am in no way being morbid, I need to prepare myself to the best of my abilities as I'll also be supporting my Dad through this heart breaking journey, also my grown up children as they too will need support in some areas. I only hope that the end is quick and not distressing for my Mum and also for the family.

Well my mom is probably not much different than anybody else's mom with dementia. She is about 6' & weighs about 170lbs. So when she wants to kick my butt, she is more than capable. She is just not predictable in when she will hit me! I use to put my forehead on hers & say l love you! Now l put my forehead on hers & hang on her hands! Does not know what is on her plate as in food! Still uses depends & the tolit, but usually not in time. I've taken care of mom for nearly 3yrs. an she would fall all the time! Never getting hurt tho, the Dr. Said probably a control issue! Well she does not fall any more, but is getting to forget what food is and were is the bathroom & is hallucinating, an does not love me an barely can use a walker! She would kill me before she would get in the shower, but will let me wash her! Constantly has uninstructed tract infection(uti). Uses the tolit in her bathroom, several times during the night. I wipe her during the day with wipes so as not to get uti. She wipes from back to front so consequently l cannot stop the (uti) from reacurring! At this point in time.. Mom being 93 in June, and is but a shell of a woman, l pray mom will die in her sleep, evev tho l know l am not prepared for her death! I am amazed at all you caregivers out there making such huge sacrifices! God bless you all!

Dear yellowfeever, your questions brought tears to my eyes, having just walked through the end of dementia with my mama. You are so right, the stages move, slowly, rapidly, some go quickly and some slowly. In our particular case, mama actually had hydrocephalus which resulted in the dementia. Mama had been wheelchair bound and living with us for four and a half years when last December she fell out of wheelchair and broke her hip. She had surgery, then to rehab, at 86. She was talking less and less, but no one had told me she had Dementia until one day at rehab the nurse said she was an eight on the scale, 0-10. My daughter and I could not believe it. She continued to digress and after four weeks in rehab, contracting c-diff, they sent her home. I ended up contacting Hospice in our area, Community Hospice, and they were lifesavers. I would never have known that she only had two more months to live when I brought her home. I watched h er daily as she began to wither away. She was my baby, changing her diapers, feeding her, what little she would eat. I can tell you this, those last two months of her life were precious to me. I made amends for anything and everything. I would sit with her and stroke her face, hold her hand, read scripture and play praise and worship music. I was with her until she entered the gates of heaven. I pray that whatever assurance you need, you will find. Blessings to you and may our God be gracious to you and your mama.

All of the posts here are dreadfully sad. SEASIDEMEMORIES Your post is very touching. Your ex- Husband is so Blessed to have You.
LISSYLOO I agree with You. Why allow People suffer hopelessly when there is no hope of a recovery ? Long before My Mother had been diagnosed with Alzheimer's, I heard Her say " IM GREAT THANKS BE TO THE LORD AS LONG AS I HAVE MY MIND, BUT IF I EVER LOST MY MIND, I WOULD PRAY FOR THE LORD TO TAKE ME. When Mom had been diagnosed with Al/s by a Geriatrition in mid 2013, I never told Her..and I asked Our Family not to either. What a cruel end to such a wonderful Life.

My Lovely Mum is in final stage vascular dementia...she hasn't eaten for weeks...I've lost count of how many! She knows she's dying and wants to go...it's amazing she's still here...I love my Mum and cannot imagine my life without her but she needs to go now...i would even help her her if I could...this terrible disease is inhumane and no one should have to live with it....I totally believe in Euthanasia ...my Mum would absolutely hate being like this if she had control of her life right now!

Yellowfever I feel overcome by Your beautiful letter. It's a beautiful tribute to Your Mum. You are such a wonderful Daughter .Please NEVER FEEL GUILTY. You are making the correct decisions for Your Mum, as You've got Her interest with You all of the time. I'm caring for My Mom Who's suffering from Al/ s, and had been diagnosed 21/2 years ago. Mom is 86 years, but has not been told of Her condition. Doctor and Nurses advised Me not to upset Mom by telling Her. I did ask Mother one day when We were talking about everything and anything if say down the road when She would grow old and if it were necessary to feed Her through a feeding tube, would She be for it. Mother answered without hesitation, NO never, LET ME GO QUIETLY INTO THE NIGHT...DO YOU HEAR ME NOW ?
PROMICE ME. I think it is best to ask well in advance, and grant Them Their final wish. We owe it to Them because We cared for and We love Them dearly.

My mom just recently had a hard fall that fractured her lower lumbar region, she's 95, have not noticed any obvious symptoms of dementia, until the fall, then while entered into rehabilitation in the hospital she started turning down all meals, said the food was disgusting, well when released, they determined she was at the point of malnutrition, and that if she didn't have any nutrients to feed off of she would die. Brought her home, after that she just went down hill, and wouldn't attempt to eat or drink anything. What is this based on? Please I'm so overwhelmed with such a fast time period that this has happened.

I've read all the posts here and they're so sad, but I've been asking myself the same question for some time. My mother, 89 with parkinsons, many strokes and dementia, has been in a nursing homer for 2.5 years and has gone downhill rapidly in the last couple of months. She's bed ridden, can no longer sit up or stand, eats virtually nothing - just a few protein shakes a day - can't speak and sleeps most all the time. I feel the end is close. The staff are wonderful and thankfully she's in no pain. She has a DNR in place. All that can be done is keep her comfortable as nature takes its course.

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

me and my mom care for my grandpa who has dementia and parkinsons disease and we've been spoon feeding him for like the past two years. With drinking liquids try this powder called Thick It, they sell the generic brand at walgreens, it has no flavor it just makes it easier to swallow. Also try to get a form of care to help for example Hospice sends nurses and aids to my house every day to take care of my grandpa when me and my mom are at work.

I feel that At some point ......We must let go and let God.

Bonnie, sorry for your loss and wow, I can identify with how sudden the whole thing seems even if you've been expecting it for years...hugs and prayers. It meant a lot to me too that I was there for my Mom's passing!

We had hospice out to the house right after her diagnoses and stroke, she refused, then again after a few scary hospital visits and she refused again. She believes that hospice is only for getting you ready to die and she keeps wanting to go to the hospital. they explained that they have changed and are there to support her through her journey for however long that may be, but they can not be here if she continues with aggressive care (going to hospital every chance). I wish they were here though, they were great when my dad was dying. Thanks, I may try it again

I lost my mom on March 19, 2015. My last post we were nearing the end. I am so thankful that I had Hospice along side of me to help me walk out the journey. I again encourage you not to wait until the end to get Hospice involved. With Dementia diagnosis and the doctor's referral, my mother could have been on Hospice for a couple of years before she left this earth to be with Jesus! You can find out the criteria, it could be different with each Hospice group, I don't know. what I do know is that I was so blessed to have the help and visits from Hospice until the end. Thankfully, I was beside my mother's bed as she breathed her last breath at 4:16am. It brings me tears, just thinking of that special time. I would not have traded it for anything. I miss my mama, more than the relief that I feel, from not having to care for her day in and day out. Five years seemed like a long time, until it ended. It then seemed like just a blink of an eye. Keep loving and caring for your loved ones!!! You will never regret it!!!!! Blessings!!!!1

Well I just finished reading the 5 stages of progressive dementia and I found what I feared. She is at the beginning of the final stage. This could explain her overwhelming want to die and refusal to do anything to try and help herself. I think it is time to talk to a pro. Her docs have never done anything to treat this, so I didnt know until recently what could be done. Guess its a waiting game from here. She has slept all day today except 2 hours and she usually cries the whole time shes awake if she aint yelling about something. Good night ev1 and good luck

I never really thought about this question. I thought that after all the research I done about dementia that It would tell me all I needed to know. Thanks to this question I see that there are more questions I have about dementia that I have over looked. I really didnt know that this stuff could be signs of stages. When my mom had her stroke she had a sever UTI which I didnt think of as a factor. But I have been for the last two months been telling my boyfriend that I thought she was getting worse. She has been frail since her stroke and the fact that for about 6 months to a year she hardly ever got out of her bed so she lost all muscle mass that she had which was not much and the COPD. All this makes it difficult to walk anyway. Well for the past 2 years she has walked fine with a cane or walker. she is convinced that the physical therapist does not want her to use her walker and she does have to. Still she tries to take off with just the cane. She has fell several times because she just simply dont have the footing. Any way she has been getting worse and she sleeps12-16 hours a day. She does not keep a sleep pattern. For example she will stay up until midnight then wake at noon or one. then be ready to lay back down at 4 just to get back up at 10. She always holds her urine and rarely makes it to the bath room, I have recently started to think that maybe she dont know she has to go until its too late and she has pooped herself 3 times in the past two and a half months and was so upset with herself. She says she has lost her dignity and will hod on to what is left so she refuses to wear diapers though we have them. I think she may have another UTI thanks to me coming across this post. Also she has no problem with eating meaning she craves stuff, knows her utensils, but after just a few bites she is done and then tires from the effort of eating anything. I am going to do some more research on the stages of dementia. Thank you ev1

Thank you for sharing. I know in the near future i will be in your shoes. Hugs to you.

Thank you all for this compassionate and informative disscussion.

It's quite heart rendering but a the same time reassuring to read your stories as I don't feel so alone with my mother's situation. Mum has vascular dementia and sadly is now end state. She is I a community hospital and is receiving excellent. Care. The staff are amazing and take time to speak to me as they recognise that patients family need support too.
Mum is unable to communicate verbally now and although can eat tiny amounts of soft foods this is variable. She tends to cry softly for hours at a time but the staff think it may be the brain damage, or trying to communicate something to us rather than pain. Mum is completely immobile, incontinent, sleeps much of the time and doesn't engage with us other than eye contact. I know she hears And I sing to her , read to her, talk about past events and especially play classical music to her. It's so so sad seeing her deteriorate so much so quickly as six weeks ago I could still converse with her when she was in the mood to chat and she still managed to eat solid food. She is now struggling to swallow and has a chest infection caused by aspiration problems. She choked on fluid recently and has thickened drinks. Sadly it s matter of time and heart breaking to see her suffer this way. I hope that by sharing this experience it will help others too....

It is so helpful to come to this board and know that there are others that have gone before you, some walking alongside you and others that are beginning the journey you have been on as a caregiver. I have been on this care giving journey for five years in April, if we make it that long. My mother has been in my care, in my home, with the exception of two hospital stays and rehab stays separated by five years for hip breaks. This last time, it seemed the facility almost killed her. She left my home eating and using a bedside potty, after a four week stay at a facility, contracting c-diff along with her dementia, she was twenty pounds lighter and had not received any rehab for her hip, no longer able to use her bedside potty. We brought her home on Jan.21, 2015, thinking we were waiting on a long term bed but decided we would call in Hospice and care for her in our home as we had for the last five years. She is no longer eating and we understand that she will not be with us too much longer. i want to encourage any of you that are walking in similar shoes to contact the doctor for a hospice referral, if you are keeping your loved one at home. As POA, you can also make the decision now to do a DNR. I am just praying for the strength to continue loving on my mama in her last days. Be encouraged to keep on caring and loving on your loved one, you will never regret the investment of love and time!!!!!!