My husband has Alzheimer's. When he asks about his mother and I tell him she has died he starts crying. Should I lie to him?

Hi everyone, It has been a while. Ed fell at the NH, broke his hip. So much for Nursing Homes and Hospice. They knew he got up early, why didn't they go in and get him up. The law should be changed. You should be able to tie a person in bed with out them getting hurt. We did this at home. He could sit up but had to stay there until we got him up. He never got hurt, did this for two years.
Hospice is great but the some of the people they have are ding-bats. She gave Ed a shower and sat him down in front of the window and opened it. It was cold outside. My daughter came in and told her about it. But it didn't do any good the next time she did it again. We even had a note on there "DO NOT OPEN THIS WINDOW" can't she read. I told her too. Well he will not be going back there again. If he makes it through the operaions they will put him in rehab. Then we are bringing him home. So much for care in nursing homes.
If they don't have enough help, don't put a person you love in a nursing home and watch the Hospice care people. There is a NH place here said she can only have 6 to watch. Said she can't take her eyes off of them. Well what happens when she goes into one room to help that person. She is taking her eyes off of the other five. WHAT A LINE OF BULL. Take care, Reba

msdiva - It is hard for everyone who has to take care of a person with AD. It is nothing like anything I have ever seen. Yes it is bad for them too but they forget what happens. If it wasn't for my faith I would be in a mental hospital. I also thank the Lord for people like you and Linda, you all have been a big help to me. Take care.

hello Reba
im so sorry your going through this i just have not been throught it. My father ate but he had AD also yes your right everyone is different ..i just feel so sorry for the people has AD and the people that helps along the way, Keep ur spirit up the lord will see you through.

msdiva - I have tried all kinds of food. They lose interest in eating. It depend on how fast they go down hill. My husband has lost over 45 lbs. in just a few months. He could wake up one morning and refuse to eat again. this happen to another memeber in his family. This does happen. He has had AD for over 6 years, of which we couldn't understand what he was saying for the last 2 years. My doctor told me you can't make them eat or drink if they don't want to. This is the last stages of AD. So I have decided not to use a feeding tube. Prolong his life for what just so I can have him here. I need to let him go. You know what I am saying I am sure. Everyone is different and he has suffered long enough. The only reason I wanted a feeding tube is to help him while going through this. But I found they don't even know they are hungry. Thank you for your input.

msdiva , yes we all learn something everyday . which is a good thing .
are you still taking care of ur gma ? its been a while since u and i last talk . cant remmy which elder youre caring for . mom i think ? hope all is well at your way . xoxo

ok i c what ur saying i just never thought a alz patient would go that route and as far a reba husband is he mobile where he gets around still..im sorrry for this i just never had tio deal with alz patients with feeding tubes.. i guess i learned something new every day huh???

msdiva ... my dad s throat muscles are on its way out . will not be able to swallow anymore , thats coming and when that time comes he will have to be put on feeding tube .
reba s husband doesnt want to eat and cant try to force him to eat . he s on the run all the time . lost so much lbs and is getting to the point where he be all bones .
yes they can use feeding tube on him .
puree liquid will only choke my dad to death . :-(

Hi reba and Ihardebeck, you know i have never heard of what you guys are saying i work with alz patients for 15 yrs and i have never seen not one with a tube with them nor have i heard that they die without it in 6 mons that is totally not true..my father had alz for 6 yrs and when he got down to where he couldnt eat solid foods i did puree or soft foods,,have you tried any of them i would get a second opinion on that one i know tere tastes buds change totally but not a tube put in them

lhardebeck, thanks hon. I did a lot of looking on the internet and they said the same thing as you did. I found this - patients with non tube fed patients, found that they do not live longer, nor do they show signs of being better nourished than the non tube fed patients. Also said, elderly people with advanced dementia who have eating problems die within six months, whether they have a feeding tube or do not have a feeding tube. Such terminally ill people "not given food or water did not suffer hunger or thirst and could be kept comfortable with ice chips and swabs to moisten the mouth and lips. Dehydration leads them to lapse into comas and die peacefully…" So I guess this is the answer. Makes a person's heart break doesn't it? I do have a living will and I am not sure of what it says in there about it. Will have to read it again. Thanks Linda oxox

hi reba , soon one day my dad s throat muscles will stop working , he gets choked on food and even his drinks , the speicalist dr did tell me one day he will need a feeding tube , dad said he doesnt want one .
ya think if ed has feeding tube ya think he may pull that out ? i dont know . does he have a living will ? did u guys ever talked about this before he got worst ?
i told the dr that dad doesnt want one , dr ask me if he has a living will ? i told him yes its in fla . he said he needs it before time comes cuz if he doesnt read that living will he will go ahead and put one in , i have no say so in any of his health wise .
its like i decide he is to starve and cant do that . that would be murder . unless dad has it in writing . he cant make any dessions or say so cuz of his dementia . he s no dummy he knows whats going on around him and he can perfetly well deicide what he wants . but not to the dr s eyes , living will plz ...
i m thinkin ed may pull or tug or rip that feeding tube out ??
i honeslty dont know ,
if it was me that needed a feeding tube and i have alz real bad , my mind is completely gone ,. no i do not want to be kept alive on feeding tube ...
god bless u reba , ure a good person what ever u decide is ok and i know u will do the right thing , if u are still confuse , need gather up ur childrens and ask them for some support .
xoxox

As you all know Ed has AD, he isn't eating very much at all. Should I have a feeding tube put in? I don't know if the doctor will do it but would like to know what you think.

Well no but I have my sister who I can vent with. She helps me a lot but now my daughter is moving in with me. So I will be able to get out more. I have read a lot on the internet about AD. Then on here too - who are going through the same thing. But I didn't know about them not eating and just found that out a month ago. Thanks for being here for me. Did you say who you are taking care of?

Oh Reba when you love someone it is hard to watch them decline. Are you in a caregiver support group where you live??? I think that could help you too... l facilitate 3 of them in my area. I think talking with someone who understands is helpful... take care, J

Jaye,

Yes he does have other diseases. High blood pressure. They had to put a pace maker in because with all of the meds. he was on to get his BP down, his heart rate went into the 30's or below. Also he had a irregular heartbeat. So that worked out well. He will be 78 in December.

I just can't stand seeing him not eating. He is skin and bones. I know we can live a long time on very little food. If he stops eating that is the Alzheimers. I know of two people that happen to and they died within two weeks.

I guess I should stop being so upset about it and just let nature do what is best. You can't fight something when no one knows the cause.

Thanks Jaye for your input.

Many things enter in to how long someone with alzheimer's disease lives. How old is he? Does he have other health issues such as high blood pressure or diabetes. Most of the times folks do not die of alzheimer's disease as such, they die from a complication, such as pneumonia, or stroke. I know this is hard!!! Please take care and feel free to keep writing I am happy to as it "visit" with you. your friend J

Jaye, That is sweet. Also I wanted to say that I was told even at the stage Ed is in now about his poor eating he still could live another 2-3 years. Do you know anything about that?

I do think it can be very hard to know what to do and I agree that lying is not good. However when they are not able to understand, it may be the kindest thing to do. When my Grandma was dying( I had the priviledge of caring for her) she thought I was her Mother. I told my Dad her son that Grandma was confused, she thinks I am her Mother. My Dad's response was no honny you are like her Mother. That was without a doubt one of the best complimenta I ever got. My Dad was very very fond of his Grandmother.

First time I told him he cried a little. He doesn't go back in time unless someone brings it up. But don't think a lie would be a wrong with someone with AD. I don't like a lie that is why I told him the truth. He wanted to look up her phone number. So I told him the truth.

theraputic fiblet is what the Alzheimer's assoc calls that. Most folks with alzheimer's disease go back in time as it were and so telling him his Mom is gone will not make sence to him. I am not an advocate of lying however, if he understood what you are telling hime, it would only make him said... 5 minutes later he will not remember and will be asking again. An appropriate response is I have not seen her today, or where do you suppose she is. take care God bless... J

She was ok, don't worry about that. If she wasn't eating then it was her time to go. I believe in God and I know you will see her again. No pain with AD. Thank God!

It took MOM about 2 weeks to lose her battle once she stopped eating. I pray to GOD that she didn't suffer, and from what I saw, she didn't appear to be in pain, but she wasn't talking much the last week either.

Actually for my mother I think it was the LACK of medication that may have been a big contributor. But since I am not a doctor, and I know that my mother is at peace, I really don't want to know more. I probably should. But then I also wanted an autopsy done and my brothers would hear NOTHING of that happening. She is in God's hands now. I love you Mom!

That is good news. Just try to go with the flow. Good Luck

bnagey - thanks but for some odd reason he now remembers she is gone. He hasn't ask in a while. But the last time he did he said she is gone.

I agree, to lie is appropriate. Validate his feelings. Try to find out where he is and fit into his thinking. ( If his perception changes) I work at a Nursing Home and we try to find out by asking who, what, when where questions. Sometimes people with Alz. believe they are 20 yrs old, and you need to fit into that part of their life. For example: a lady who always asks where are my babies? You say when did you see them last? How old are they, etc. Then we fib and say they are laying down for a nap.

Jaye, thanks and I have done that too. I guess the end must be near. When they stop eating completely it takes less than two weeks. But I needed to know what others have done. I guess we have to take what comes. It is a sad disease but at least they don't have pain. What ever I give him he only drinks or eats half.

MiaMadre, thanks for all of the information. He eats very little. Less than half of what I give him. I try everything. Ice cream, rootbeer floats, puddings and some candy. Juices and fruits. He doesn't eat much meat no matter how I fix it. We even try to feed him but it is kind of funny. If he doesn't want anymore food he kisses the fork and no matter what we say he is done. I was wondering how long can he live like this?

I checked with Hospice and they said they take all of his medication away from them. That is up to the doctors at Hospice. So I am keeping him home until he dies. I don't want him to suffer a stroke, heart attack. That would happen if they took his blood pressure meds. I guess they drug them until they die. It is all over the internet how they do this. But maybe it is better than suffering but isn't that murder?

I think that is really a common thing with Alzheimer's disease Reba. I would encourage you to offer nutrious things often. Pudding or egg custard taste good and they are easily swallowed. Offer milk shakes or malts to him. Noodles cooked in chicken broth slide down easily and yet offer some nutrition. take care I hope this helps you... J

Yes, my mother went from a healthy 150 pounds down to 92 lbs at the time of her death.

With Alzheimer's I truly believe that the part of the brain that govens hunger becomes 'damaged' or atrophied and no longer works the way it should.

The hypothalamus controls the pulse, thirst, appetite, sleep patterns, and other processes in our bodies that happen automatically. It also controls the pituitary gland, which makes the hormones that control our growth, metabolism, digestion, sexual maturity, and response to stress.

If this portion of the brain in our loved ones is affected it would explain the lack of appetite, lack of desire to drink fluids, inability to digest food and even disruption in sleep patterns. Makes sense doesn't it?

P.E.T. scans (performed while our loved ones are awake) can give more of an indication of the part of the brain that is being affected, but this can change quickly with dementia patients.

STIMULATE the appetite. Get "Dad" involved in the eating process. Watch the food channel while you are simmering apples and cinnamon (if that is what they are cooking)... or bake bread (I got a bread machine) Roast chicken in your oven, cook in a slow cooker something that will fill the air with WONDERFUL homemade scents.

Although my suggestions may help one day, it may not the next. Present food on contrasting plates, White foods (like mashed potatotes) on BLUE plates, not a white plate. RED stimulates the appetite, so we used red plates to eat too.

Offer MORE small meal, of only ONE food or casseroles if Dad is picking meals apart. Fry bacon! (We don't have to offer it to eat, but HEY why not?) Stimulating any part of the brain that triggers eating is the goal here.

Offer his favorite foods FIRST> Even if it is ice cream, it may just prompt him to eat more.

It was heartbreaking to see my mother lose her appetite. She was an amazing cook and had an appetite that would rival a teen age boy! I resorted to macaroni and cheese milkshakes towards the last week of her life to encourage her to eat. She would just sit and stir her food for hours on end. No amount of encouraging helped. Her last week in the hospital included her being on a feeding tube, but that would even help.

I don't mean to paint such a gloomy picture of this, but there are things you can try that MIGHT just help.

Hi, it has been a while, hope all of you are doing well. Ed has lost 35 lbs in 6 mos. I just don't know how long he can live eating like this. Some days he doesn't eat enough to fill a cup. Have any of you had someone with AD that did this?

Jaye - I wish I could of had my mother longer - Some kids don't even want to visit with their parents. I have a daughter that is like that and she only comes over when she has to. She has seen her dad three maybe four times within 10 mos. Talking on the phone seems to be enough for her and she lives a mile away. She always fines an excuse but nothing bad happens when she is here so I don't know what it is with her.