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

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.

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.

Lily that is heart breaking how long has your mother suffered from vascular dementia, my aunt is 85 and I suspect she is beggining to show signs. Id love to hear about your experience with the vascular dementia.

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...

Helen and Lilly, I am so sorry to here of your mothers. Placing mom in a home is my worst fear that she will be treated less than human. I don't care what an elder's condition is, No place should treat them as non-exsistent and non-important people. For a brief period in my life I worked in a nursing home. That place was HELL on earth for those patients. I wouldn't put my worst enemy there!! I morally couldn't work in a place like that so I quit within 2 months. I have seen those that could walk forced to sit all day, or giving medication for sediation. ones walking around in soaked diapers and soiled clothes. Its so sad that these places go on to exist!!
I have wore depends on my mom for over a year or so now. Just as precaution, she occasionally had accidents. A while back ago she had the need for adult diapers at nite. But I guess now her sensation of "when" to go is fading away. I don't mind changing her depends. But I feel so bad for her, especially when she realizes why I am changing her. She looks at me so sad. I have given my mother ensure and what not. I am concerned of weight loss. She has always been a petite woman normally weight 90-100lbs. So I know any weight loss can mean trouble. She has been taking Namenda and Aricept for 2 yrs now. I have noticed her decline is more slight than a friend of her's who also has dementia and not taking anything. Which I feel for this woman, her family don't see no sense to give it to her. Isn't that sad??? I have spent the last 2 yrs taking mom to different dr's and trying to get a right combo of meds for her. I finally got a good dr who got mom good meds to help with her anxiety along with the dementia. But I feel that maybe I took to long to find this doctor. Which makes me feel guilty, like I should have tried harder. I just want mom to have the best quality of life till the end. There is many times that I wish mom would decease before the Dementia completely takes over. That she may go in peace with no suffering, without tubes and bed-ridden. She told me a while ago that she told God she was ready, when he was. However, she has no living will and is not able to understand what that means. So, since I am POA when that time comes I know she would want DNR. But, that means I will have her life in my hands, and have to verbally say DNR, I know I will feel some sense of guilt if I did right thing and how am I going to live with that???
I tend to worry about mom on a day to day basis. However, with this new transition phase I need to focus more on whats coming in the future.Whether its months or years that day is going to come and I need to be prepared!!
thanks for your comments!!

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

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.

Hello yellowfever, my mother was diagnosed in 2006. but for the first year she thought I was the one that was doing stupid things. We had a few rows I ended up in hospital having an operation a severed nerve where both exasperated she threw a dish cloth at me and said I have had enough of you and I was wiping the dishes and slammed my hand down with a saucer in my hand and cut the nerve twice to my index finger had to have operation, I suffered depression after her being sectioned while at the day centre, because every day I visited her and she wanted me to take her home, I couldn't so used to cry all the way home, then I had Bells Palsy after that got better I had her back home for my last attempt to care for her. But I couldn't get any sleep because she was making such loud noises it was impossible. I slept in the lounge near the front door in case she wandered but would wake up to her shining a torch in my face at 5 am.
To me her dementia quickened at an alarming pace after they stopped her warfarin because she was having falls, the doc said she could bleed into the brain. So he put her on aspirin he commented quietly but she will have more mini strokes that was November by the following April she was quite violent at home and in the hospital where she was taken, I was called out 1am to come to subdue her, no body could get a sedative down her she was waving her walking stick at the nurses and security. When she raised her stick to strike a nurse I was behind her, I caught hold of it and the nurse did and we still couldn't bring the stick down, her strength was unbelievable. Then suddenly she let go and fell backwards into my arms with such speed I only just managed to stop her hitting the ground by the time I got her weight. Then I said to the nurse while she is down give her an injection and so she gradually was coaxed back to her side room. All this happened in the main ward she was going to attack other patients who were in the assessment ward next to the A&E. She was in a secure ward after that and I was there till 4:30am every night from 7pm. When she came home she was only home for a few weeks before the sectioning, then again she came home in the September just before her birthday and by the February the following year the Social Worker said enough is enough, if we don't put her in a home then they are going to have two people on their hands so he took the decision from me which I was relieved at because by then I was crying every day down the phone to my friend or in the kitchen crying while making food.
I found a nice home overlooking the sea but she was only in there 10 days before being admitted to hospital with a fracture to her lower leg, they said '' your mother threw herself to the floor'' or ''banged her leg against the wall while in bed'' and minus her wedding ring and eternity ring, they said she didn't come into the home with them on, but I did her nails for her the morning she went in and thought shall I take them off and keep for safety, but decided they weren't mine to take so let her wear them in there. I wouldn't let her go back to that home from the hospital so found another who then used lap restraint to keep her sat down till I made a complaint and threatened to put it in the papers. she was moved from that section of the home to where ''they can roam'' hmmm I actually saw the staff press on other patients shoulders to make them sit down. If they got up when staff weren't looking they were soon brought back to sit. I wanted my mother removed from there but the Social Services were happy with her care there and refused to let me move her. On looking originally a few refused to take her because of the noises she was making ''It would disturb others'' She stopped making the noises for a while in the home and slept so guess the sleep was induced because now in the hospital she is making them again and so as much as I would like to have her back home could I get any rest or would I be driven mad with the noises. its like alyha alyha alyha all the time. Then a bit of her talking more like rambling because she can't talk but she must know what she is trying to say. I don't know. And if she can't eat and has to be tube fed???? I don't think I could do it and would prefer for her to stay in hospital than go back to the home...

My mother sounds like yellow's mom...in the lsat few months she went from peeing wherever to rarely going on the toilet and mostly soaking her pullups. There are pads I can put on the bed that are washable - which I am going to get soon. It will be easier than changing pullups to just change the pads - but I will not let her just lie around.
She can no longer walk - sometimes with assistance, but that is near impossible now. She care barely stand on her own. I try to get her to do what she can, but she is small anyway. She complains of pain when she stands - but I really really try to get her to take a few steps - but that is going to have to stop soon. She will sit in the transport wheelchair and move herself around - "walk" while sitting.
She does not have good verbal skills - has not had for some time, but there is significant decline recently.
She also is having more and more difficulty with feeding herself - even finger food. I have found her able to eat ice cream bars - so she eats them frequently and I feed her a lot of the time. I think part of the problem is increasing difficulty with swallowing - her appetite is rapidly decreasing, but I give her things I can easily spoon feed her like applesauce. I am not sure she can take Ensure / Boost - some of those things really mess with the diabetes - something else I have to find out about. Eating / appetite/ feeding self skills have taken a major downhill turn in just two weeks.
She also has diabetes which compicates everything. She has another UTI right now.
And like others I hope that she does not have to suffer from this for a long time. She does have the living will that prohibits DNR, feeding tubes, etc. It also says antibiotics.
I plan to keep her home - I live in her home with her.
She is talking more about deceased family and has told me that my brother (who died 8 years ago) is coming to get her this summer.
I have not given her Aricept, Namenda, etc (that was Dad's decision while he was still living) - but she does well with diet and exercise.

@Pineapple...the drugs probably won't help her at this point as fas as slowing down the process. But for her UTi give her sugar free cranberry juice...make it a staple. Also, if she has trouble eating solids either put her dinner in a blender or buy baby food. As the progress they have trouble swallowing don't let her eat ice cream so much....she may want it as her main dish like kids. Give it to her as a treat and sugar free at that. Edys Vanilla by Splenda is very good. The blue container. (My mom is in a nursing home for Intermidiate Dementia.) My mom talks about her mom all the time I have to change the subject or go along with it and make her mom seem very busy. My grandma died about 20 yrs ago. Mom thinks she is alive, I made the mistake of reminding her last year and I will never do that again. It hurts them too much, it will be reoccuring pain. Good Luck.

Hello, A month ago when I asked this question I was unsure about how fast this last stage of Dementia would drag along. WOW, to say that a month later, mom no longer walks and barely bears weight when I try to move her. She has been in the hospital with Sepsis due to another bad UTI. She no longer ever speaks more than a few words. She won't eat hardly anything. As of last week, mom is now on Hospice. If you could have seen her 2 weeks ago and then compare to what is going on now, its beyond day and nite in how fast the progression took hold. She can't really hold her head up and I am constantly straightening her up in her chair. She is starting to get tremors in her right foot and hand. She is retaining fluid, but on a good note her lungs are clear at present. If mom don't start to level out I honestly feel she won't make it 6 months to a year. Reality is really hitting me hard. Mom didn't have a living will so, with me being POA hospice of course asks the hard question rescuitate or not. It was hard for me to say DNR was my decision. I know mom wouldn't want to live on machines. Let God take her to a better place where she no longer suffers.
Pineapple and Boston I feel for the both of you and you are in my thoughts.

P.S. I want to thank all that replied and I hope you stay strong and to let God help you get through the hard times.

I use SF and Low Fat ice creams for Mom - diabetes and cholesterol issues go together. We use regular cranberry juice because the low sugar is too watered down,but I "spike" it with unflavored pedialyte. When we used just cranberry juice it did not help. The pedialyte has helped a lot to keep her hydrated.

Swallowing is an interesting issue - sometimes it seems it is difficult and other times she devours everything in sight. She will eat toast with something on it - so I have been blending up vegetables or mixtures of fruits with cream cheese, etc to put on the toast to get "better" food choices for her.

When I started caring for Mom 3 years ago she could not walk...I started getting her exercising and walking - started by her pushing the transport wheelchair so we had it in case she got tired. And had her walking a mile a day - we still walk but modified.

Mom seems to know deceasd family are deceased - she does not ask about where they are but talks about talking to them. Talking about my brother is recent. She rarely mentioned him at all until the last few months.

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 myself think about how we all will wind up. I say this because like that old saying” We reap what we sow” If our children will not even call to see how we are doing or feeling at lease sometime once in a while.What about when our time come around? Who will have the answer as to DNR

Hi, My mother is now well. It seems she just had swallowed food and it had gone down the wrong way, but couldn't cough it up. The doctors risked her going into aspiration again to give her one last chance to be able to eat properly, and she did and hasn't stopped since. So I think this must have been going on for a long time when she was being treated for chest infections for the past two years. I have refused for her to go back to the home she was in, so she is in hospital till it is decided what kind of care she needs.
I would love to have her home but know I couldn't manage especially changing her as she is now incontinent both ways and if the hospital have a struggle keeping her clean then I know I wouldn't be able to. They are wonderful with her in the hospital I wish she could stay there. But they will need her bed eventually for someone who was in the same condition as her when she was admitted. And away from all the other people en-masse in the room in the home she is more concious of visitors or the staff and sometimes mutters words to herself but can't get what she is saying, she says thankyou for a drink or when fed she thanks the staff.
Mother isn't totally well but not dying now... they thought she was when admitted. She has to have her food pureed and her drinks thickened but on the whole she is fine.
Thankyou for all your comments and boosts for me..

for yellowfever, I think your mum is not quite in the last stages yet, she has come to the point where she needs help feeding and holding her drink, but if you give her a straw even for her tea she will manage ok, but make sure it isn't too hot as with a straw it goes to the roof of the mouth and would burn her...My mother went through a finger feeding stage then went back to eating with a fork, give her a spoon instead of a knife so if she struggles to use a fork she can use the spoon.
I think you have to watch when she swallows to make sure she does swallow once or twice when eating or drinking, try it yourself, when we have a drink we swallow the main drink then what is left in our mouth we swallow again, so watch out for that, if she doesn't then it will go to her lungs then I think is the time when you are going to need help and also make sure she is upright when eating and drinking.
You also have to look after yourself, because I had depression and Bells Palsy when looking after my mother before she went in the home. So be careful you still have your life, You can put her in a home without feeling guilty because you have done your best for her. I used to cry with the way my mother was it was as if she knew she was going down hill so would torment the life out of me, I would be crying to my friend on the phone and the social services till in the end they said enough is enough she must go in a home now or 'we' will have two people on our hands to look after.
I have my life back but no friends because she manipulated me before she had dementia I had to report to her every day or she would rant... always has been bad tempered. My computer is my best friend... Just be careful yours doesn't end up being your best friend. Live your life now, you can't live your life for your mother she has had her time and you have done your best... have a life while you are able to... Take Care

Dementia forgets names.....my mom always knows who I am.

Dear Yellowfever,
You are describing what my mom went through and she died almost a year ago on May 26. By this time she was full time in the bed and of course had a hard time swallowing. She couldn't speak but when we looked into each others eyes we communicated just fine.

Please don't let anyone talk you into a feeding tube. It's traumatic and painful and like others have said, to what end?

I went out and got the Junior's Baby foods and would heat a little of that up and if it took an hour to get her to take some then that's what it took. Mom was not on any pain medication and was not in pain. She was as peaceful as one can be in the situation.

I did what Carol talks about in that I told her all the time how much I loved her and i would sit with her and hold her hand. I told her over and over that she was the bravest person I had ever met because she dealt with her Dementia with all of the grace and dignity a person can when they are taken apart by this disease.

The morning of the day she died I knew something was different but there was never ANY question in my mind that she would be DNR. I panicked for a moment and for the first time called Hospice. The two women who showed up were true angels and calmed me so that I could get up on the bed with my mom and hold her. When she died in my arms I stayed on the bed (she was in her pretty room at home) with her. The hospice nurses made no move to resusitate her because they have seen this many times and knew better than to prolong someone's agony.
I did not want to resusitate her because she was free at last.
She died peacefully and I have absolutely no guilt at being the one to make sure that she was released from this terrible disease.

When the mind and the body are finished here on earth it hurts those of us who are left behind, but you tell your mom that you will see her again in the blink of an eye...

Release yourself from this terrible disease also. You are a good and caring person. DNR.

lovbob

@Johnnycares - You will have to leave a will with a statement of DNR. I don't have children and it doesn't look like its going to happen. My family is distant and nonresponsive. So, I plan to do a will and just let it be.

My mum was diagnosed with vascular dementia in January 11, we knew something was wrong but mum refused to see a doctor. From being diagnosed mum's dementia accelerated, mum is now in an assessment centre for the last three months. She has not eaten for the last few months, drinking very little fluid e.g. 350mls a day and sleeps in her chair most of the day. Mum has developed a bed sore and staff have advised bed rest in a profiling bed, mum also suffers with vascular ulcers. Mum is no longer able to sit up, walk or stand independently and unable to open her eyes. Cannot put two words together. Staff are insistent that she is taken out of bed and put in a chair for at least 2hours a day, but all she does is sleep. My mum was a very intelligent lady with a tremendous sense of humor, we miss her so much. We feel so helpless not knowing if we should be doing something to rescure her from this living hell. Everyday are hearts break to see mum suffering so much.

All I can say is so sorry for you both .I know that this is part of our life we did not expect. Please let us know how you are doing. Really big (hugs) remember you are not along in this heart break part of life .God Bless you and your family.

I notice Mom distinguishing between talking about her house and going home. When she talks about her house, she says it is where the family is. When she talks about going home, it's to be with her parents and Dad (all deceased). Causes me to wonderif it is part of her way of saying she is preparing to leave us.

I know that my wife will recall things from the past but will forget a few seconds ago,It is hard to tell which way they are going. I wish with all my heart that our children's would be a little like you. God bless and take care

I feel your pain. I am having trouble dealing with similar issues myself. My almost 92 year old mother was living in a retirement home with my Dad until a few weeks ago. I could tell her dementia problems were increasing and did want Dad to seek some respite care for her. At the end of April he had a really bad week with her and checked her into the memory care facility next door for 48 hours but then proceeded to spend almost all of his time there with her. After the time was up he decided to bring her back home. 2 weeks went by but he had a bad cold and she was becoming increasingly disoriented was and thinking strangers had been in her room at night. So he took her back and was seriously thinking of making it permanent. Then I guess Mom decided for him as she had a mild Stroke on the third day. She now cannot walk although she regained use of her left arm and she has some movement in left leg but not enough for walking. Her speech never was affected, in fact the day of the stroke she seemed more aware than she did most of the time. Now I just feel bad. The place is nice and homey feeling and the caregivers are loving and good to everyone. It's just that the residents seem to just sit around and sleep all day. Some are constant wanders but no one talks more than a word or two. They do seem to perk up at meal times but show little interest in the other acivities offered. Mom has always been pretty social. Even now she is, but can't really carry on much of a conversation because her short term memorey is non-existent and has been for quite some time. The care givers are there if she needs anything but no one really seems to try and elicit much from any of the residents if they are not asking .

There is no way Dad could handle her anymore. Besides all the other things going on she no longer can move from place to place without a strong person assisting. She is becoming even more incontinent although that has been an issue to one degree or another for several years.
He has been visiting 3x a day but said he was going to cut back to 2x. He stays about an hour. She does know us and is happy to see us but has little to say. Sometimes she is adamant she wants to go home but other times not. I know this has to be but it is so hard for her. She was happier when she was living with my Dad. He has been her rock.

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".

Tube feeding is actually not helpful for quality or quantity of like overall in this situatin, though individual scenarios can vary. If there is a specific problem with swallowing, as from a brain stem stroke, it may make perfect sense; if a person with generalized loss of all functions will be more confined to bed or be agitated and pull a tube out if not restrained, that absolutely tips it over to be something to avoid, and is becomes best to just feed by hand as tolerated and desired - appetite may be very, very low - instead. I think it is terribly important to respect a persons wishes and focus on comfort and quality of life in a setting of advanced dementia.

My brother, with throat cancer, just got off of tube feeding. It was a temporary measure while he was on chemo and radiation treatments. That is a perfect use for that technology. I am not opposed to all tube feeding, but for persons with dementia and persons near the end of their lives there is no evidence that it improves the quality of life. Just the opposite if, as vstefans says, the person must be restrained from trying to pull it out. A feeding tube was twice recommended for my husband in the 10 years he had dementia. He turned it down both times and I supported his decisions.

The first time it was a young speech pathologist who recommended the tube. She explained why it was her recommendation. Hubby and I had discussed this before and were prepared with the answer, No. Only then did she say she respected that decision and she certainly wished that decision had been made for her grandfather.

I'm glad my brother had a feeding tube. I'm glad my husband did not. And having looked up the research on the subject, I think that patients are not given full information about the benefits and risks at the time they are expected to make a decision.

all i can say is i pray God helps us all through this road in life...just so sad reading everyones stories but how beautiful at the same time for the love you all have within your hearts...God Bless..
i am an only child and watched my dad go through his life journey almost 12 years ago as my heart broke everyday watching him slowly slip away from my mom "which was his care taker" and me... how i cried cried and cried and was strong enough to be there when he was in the hospital holding his hand with my mom by my side as he left us...even though i was married with 4 children at that time and had other family members in the room at the time of my dadi's passing(Thank God)i will never forget the feeling ...the trio we had between my beautiful mom,dad and i had been broken...i felt alone and scared even though i new i wasen't....my beautiful mom did a wonderful job careing for a man that gave us both the most beautiful life anyone could...God truly did bless me with two beautiful souls that i proudly call my parents..
Unfortunatley to my sadness my mom was diagnosed with dementia about 6 years ago and is now on her last stages...my husband has taken on the burden of working two jobs so i could stay home and care for my mom through her journey along with careing for my two youngest children"out of my six" horses, dogs,birds,turtle..24/7 day night night day it's just what i do because she deserves me too and i am blessed to be able too....my life has been revolved around trying to figure out what can i do? what can help her? on top of that my mom always suffered from anxiety but now it has just become uncontrolable" sad to say" spending hours n hrs n hrs talking to doctors, er visits, dr's, hospice dr's, ummm on the computer trying to find somethinggggg somethinggg that can fix this!!!! mentally and physically the desperation i feel isen't fixable so i finally break down exhausted and crying and say to God.......i'm sorry but my dad? and now my mom? i soul searched within myself and realized all i was doing is making myself sick and not being able to change anything due to destiny as my mom use to say to me" she believed that the day we are born is the day we have our destiny all written out to how it will be at the end and we need to respect that.This beautiful women is going to leave me due to dementia? and now what? so i have slowley tried telling myself that i can only do what i can do and the rest is in Gods Hands and hope to be able to keep it together and not let it scare me... Life is beautiful and death is inevitable...that's why" as my dad would say to me" life needs to be respected and never taken for granted..live life on the right road and or learn from your mistakes so at the end of your journey you can be proud of what you have accomplished and how u lived and loved....my mom is on her finall days and i do the best i can do keeping it together for her and for my family and myself. i will try to continue my life and live it to make them both proud of the job they have done in their lives.....and i say the same to everyone..May God keep you all strong and remember your not alone....xo

Hi, one of the entries here touched me when she said: 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.
This is so where I am right now. My mom has had severe dementia for 4 years, this year being the worst. She has to have total care, and she doesn't speak any more, but will jabber sounds like a baby does. They just put a feeding tube into my mom this week. Yes, she quit eating, and drinking and even her doctor did not want to have a feeding tube put into her. What right do we have to play god? I see my mom sitting in her chair (before this past week) with such a sad frown on her face, shaking her head back and forth in a "no" position and tears showing in her eyes, looking at me and to me saying, "please, no more - let me die!". I am not her caregiver, my 88 year old father is with the care of daily case workers from CCAC. She has not "quality of life", said also by her doctor, so why would it be reasonable to put in a feeding tube? I am so sick with the decision made by my father and sister, that I almost lost my faith and it usually will get me through anything, but I cannot understand the why of it. I believe my father loves my mom, but in all honesty he needs her pension to continue to live in his home, and so he needs her alive, no matter in what conditions. So, please for those out there who are dealing with this issue of, "quality of life" consider your patient, not yourselves in prolonging their life for the good of money, fear of death or for any other reason.