Dear Reba, I was a Hospice nurse for ten years and can only support you in everything you are doing. The body knows what it is doing and for the information of others. People do not deliberately starve themselves to death. If you can keep the mouth clean and moist. Dentures should be well fitting, in or out don't make a fight of it. Quality not quantity is most import in the last stage of life. Leave a little snack of a favorite food at the bedside or chairside, something dry and unwrapped so it's easy to reach. As far as bathing and hygiene are concerned no one needs to bathe every day so if your loved one resists get help and force it once a week if that does not cause obvious distress, otherwise sneak it in. For example a back rub can be very relaxing , but before you start that massage a good wash down of that area can be snuck in. To shave or not to shave does it really matter, yes if Santa Clause is rubbing his food in it and you find maggots! The one area that must have regular attention is the genital area which is especially important if there is any incontinence. Never mind the smell it is the rashes, bedsores and infection that need to be prevented. Try and maintain a regular bowel regime with diet and medication and potty train just like a baby.Keep a commode at the bedside. For those who have a senior who messes in inappropriate places, many times it is out of misplaced resentment and the only thing to do to make like easier is to make a room where everything is easily cleaned and sanitized. Just move the good furniture and carpet out for the duration. Those saintly people who provide care in their homes for mentally disabled clients furnish their homes this way so accidents are quickly clean and nothing is ruined. I hope this can help some caregivers and remember if you are doing your best that is always good enough. Kindest thoughts Veronica
Heatherj43, If they would look up Alzheimer's they would understand. The brain is damaged. The part that tells him he is hungry doesn't work anymore. He eats a few bites and then stops. One day he will stop eating and that will be it. He is 78 and I will not tube feed him. What would be the point. Thanks for your input and good luck with your parents. I know it is hard. So very hard. God bless you for taking care of them.
I do think most peple here do understand. I know my dad has just begun to forget how to eat, and refuses to do so. Both my parents have dementia, maybe with alzheimers, the docs really aren't sure about mom. My mom will eat 10 meals a day 'cuz she's so afraid she will forget to eat. My dad won't eat all. My sister and I stay with them at ll times, we split shifts. We are just now talking about nringing hospice in. As for the rest of your family members...to heck with them. I know most of our family members really don't know just how sick my parents are 'cuz they don't spend enough time with them to understand it. I thnak God for my sister, cuz at least she gets it and we can talk about what to do next. We ignore the rest of the family. Unless they want to come on and help, they know squat. Its none of their business.
firstgirl, bless you heart you have your hands full too. No one knows what the caregiver goes through. You give you whole life up just to take care of them. My daughter moved in with me to help in June of this year. She has her own problems with mirgraines. Her husband helps too, feeds him and give him his shower. My sister helped some but she is 10 yrs older, going to be 84 in November. But this too shall pass. Take care, Reba
reba, go for it, your life back, a careing and comfortable life for your husband. don,t let others delay you. best of luck to you , excited for you just thinking of the courage, and wisdom your showing. i,m 72 and don,t know if i,ll live long enough to see my mom through, shes 91 ,, and at home i,m chief caregiver, .. praying for you
DanielRomero, AD can start at an early age. People have lived for 20 or more years with it. Some of the stages are slower in some people. As I look back I saw the warning signs and didn't know what it was. I am running down. The last 6 years has been a real trip and one I don't want to take again. It is about time I put him in a home. Too much for my age and I want my life back. Some may think that is awful but until you have been there I hope they don't judge me too much. He is 78 and I am 74. God bless you too.
Reba, You are right. There is not anything to stop the progression of AD but death. You are doing a great job. I agree with Lilli, feed him what he will eat and keep him comfortable. When diagnosed at 71, my mother's wishes were to remain in here home of 48 years. 12 years later she is still there. When the time comes for God to call her home I hope I have the wisdom and strength you are showing during your husband late stage of his journey. You know what your husband would want and your posts show a great understanding of what is to come. God Bless.
Thanks, But I have all the help I need right now. I have four taking care of him and my son-in-law went to classes for this type of work, taking care of old people. Bathing, feeding what ever it takes.
Everyone who writes to me talk about everything except the family pushing me to make him eat. I don't have any problems other than what I have listed. He is a person with AD all that I have listed is what happens to them. I have been doing this for 6 years. Its the family I am having problems with about him not eating. It is part of the disease I tell them. I worked in a hospital with sick people and I know what I am doing. Nothing is new to me, except it is my husband. He is still walking and I have all the equipment I need. His meds? He has to have yhem, they are for his high blood pressure. He has been taking them for 40 years or more.
If you look up AD it will tell you they come to a time when they stop eating. The only thing left to do is tube feeding and that will not happen. His life is gone and he is just alive in body only. What kind of a life is that. He sees the doctor every two to three mos. There is nothing you can do for him at this stage of AD. My doctor knows everything that is going on with him. I do what he tells me. Thanks for your thoughts.
Hi Reba We had hospice care for my dad at home. A nurse came twice a week and a cna came twice a week. We could call the team anytime we wanted. They helped us get equipment for him, they provided us information on what he should be eating. They took him off meds that were causing him problems-suppressing appitite. They would provide respice care so that we could rest for 5 days. They had volunteers (which we never used) to help with chores or sit with him etc. I would investigate this further. He does not necessarily have to go anywhere. Hospice might also bring in new faces that he will listen to better. My dad was very polite to the nurse and cna and would do things for them because they were professionals and had authority. For a long time I worried about what he was eating but a you cannot force him to eat (it is against the law) and b Just because he eats does not mean he will retain it anyway. I would say let him eat what he wants and try to add powdered protein to his food. If you stir it in and wait a little while it is undetectable. Maybe find an icecream that he likes, add the protein and refreeze it and he might get the protein. Make sure you talk to his doctor before adding that though. Some illinesses require you to limit their protein intake. Unless the relative who is complaining is in the trenches with you every day-- I would ignore them. Unless you are there day in and day out you have no idea how hard it is to get someone to do anything. Nagging gets him angry at you so that he does not do anything you want. Trickery makes him suspicious and paranoid and he might decide that everything you give him is poison. .
Kitty Hospice is just another name for a home. They are there for people on a short stay or there to help end their life. They help with pain management or breathing is what I was told by a person at Hospice.
Lilli, he is my husband of 56 years this coming March. The doctor said if I would have put him in a home he wouldn't have lived this long. That tells you something right there. I started to do it twice and couldn't do it to him. All I did was end up crying and I couldn't do it because it would have killed him and it would have been lonely here without him. He is going to be 78 in December. He has had a long life and a good one too. It is time to let him go. Thanks Lilli for your input.
Reba: folks have given you tons of good advice here...but is sounds as if you are so very knowledgable about all the AD issues already and have chosen to keep Dad at home. So back to your orgininal question. Do not force your Dad to eat. Give him nourishment when you can. Make his last days comfortable and tell the family to either back off or welcome him into their homes for a few days to give you respite. I can sense that you are stretched thin....I wish for you better days to come. Lilli
firstgirl - tried all of that. I use depends and he pulls them down and starts to go on the floor. He has been in them for a year. I give him food but he doesn't want to eat it. I know about all the fats. The disease is the problem and no one can understand that. The brain tells him he is full or that part of the brain doesn't work at all. He doesn't want to eat. Takes a few bites and he doesn't want anymore, shuts his mouth and that is it. It is the brain and has been damaged by the disease. That part of the brain that tells you that you are hungry isn't working anymore. The question was, my family tells me to force him to eat. Well that can't be done. You can't force someone to eat. The feeding tubes are out. Not going to prolong his life in the condition he is already in. The last stages of AD. I have POA No one can tell me to use feeding tubes. That is the way it is stated in the POA. So they are wasting their breath. Sound heartless but he isn't here anymore. The disease has eaten up his brain.
Reba,all the food your husband will eat make it rich in fats, gravy on every thing ,plenty of butter, half in half on cereal, cheese in scrambled eggs, get the idea? and tell family to go tell someone else what to do.the hospice people has a wonderful booklet of symtems people have at the end of life stages, paper pullups helps save the laundry, and remember nothing good, or bad, lasts forever. hugs to you and yours
we did that with my Dad too Reba, there is a point at which you just want them to have peace... I know that my Dad is well in heaven. By now he is taking care of all the animals he was a real animal lover!!!
The nursing home told us people will forget how to eat and the only 2 choices are a feeding bag or to let them die as comforatbly as possible. You really need to male him see a doctor that deals with the elderly.
I truly believe hospice did tell you they would/could take away his meds. I did not mean to sound as if you were not telling the truth. I was trying to explain what hospice is really suppose to do. I think I said not hasten or prolong life... I meant to hasten or prolong the dying process. Taking away meds would more than likely hasten death. I am saying the hospice is not telling the whole truth about what they are legally bound to do based on hospice standards of care.
My mother was on blood pressure pills, thyroid pills, as well as I kept her blood sugar monitored and gave her insulin. She even could receive antibiotics for an UTI.
Some patients and their families do not want all of this and do decide to discontinue all meds once electing hospice or even once they have been on a while. But again that should be the patient's or the patient's families decision and not forced on them by the hospice. Most meds are not needed while the patient is actively dying and then would be an appropriate time to stop them, but again the hospice should still respect the patient's and family's wishes.
You have given your husband more quality of care than he would have received even in the best home. I agree with your doctor "God Bless You."
Kitty, You didn't upset me for long. I just thought you didn't understand. About Hospice, they do good for some people and they did tell me they could decide to take him off of his medication. I wouldn't lie about it. If they are in a bad condition that is what they do. I have proof but not going into that on here. When they told me that I said I couldn't do that and said that is murder. She then said you need to put him in a home. I will when the time comes but I want to keep him as long as I can. Our doctor said if I would have put him in a home he wouldn't be here and said to me "God bless you" and repeated that 3 times. That was my doctor. He cares about us.
My mom was on hospice for 16 months. There is a lot of good, bad, and ugly involved with hospice and I admit I had enough of them to do a lifetime. Yet the hospice mission is not to hasten or to prolong life. To take away his meds is against the true hospice mission. I would venture to say that it is a for-profit hospice. Is there any other hospices or home health care agencies in your area that provide palliative care?
Reba. I am sorry I am so long winded... I just have so much to share and I really do care. I just want to apologize. I did not mean to upset you. You do not need that. Please forgive me.
Hospice has no right to discontinue any of the patient's medicine, especially those that are for conditions not related to the terminal illness if the patient is not in the active phase of dying. Please read this: http://www.hospicepatients.org/withdrawing-medications.html
Kitty, LOL If I wanted my husband to die all I have to do is send him to Hospice. They were willing to take him. I said no BECAUSE THEY WANTED TO TAKE HIS MEDS AWAY, does it sound like I want him to die. I don't want people pushing him to eat. That was the whole story on this. Others have talked about a lot of things I wasn't the one who started on it but just gave my answers to their remarks. Just like I have yours. I don't need any help from your link. I have read as much as I could find on AD and started reading about it 6 years ago. I know more than I have put down on here. There is nothing you can do for a person when they are in the last stages of AD. You do what you can to protect them. No one can tell you how to handle them because they are different. But I have found a lot on the internet which gave me a lot of help. I just ask a simple question and I got a book back to read
As long as my husband eats and he lets us feed him that is what we will do. We had a great marriage and three children. No I don not want him to die. That is the whole problem. I guess you don't understand unless it happens to you.
Reba, I think you referred to me as Betty. You also started talking about other things other than just the eating issue, so I assumed that meant there was more on your mind that just the eating issue. Everyone has their own experience and there is no way one person is totally going to understand what another person is going through. But there is some comfort, we can receive from others who are going through some of the same situations. From some of your posts, you really were sounding desperate and like you wanted to end your husbands life. It doesn't mean you literally would act on that impulse, but some people do.
Yes so have personal experience with AD, I have cared for both of my parents, as I said at the same time. Most of that time, I was by myself with very little help. My mother did not have AD, but a brain tumor. I cared for her for a total of 7 years from the start of the initial cancer. My father did have AD. Though both were very sad situations, the AD was for me the hardest. But I still had a spiritual connection to both regardless. I did not say those with AD were 2 years in the same sense, I was talking about the way that I found humor in the situation so I could go on. There are some AD doctors who have used techniques that parents use with small children to lessen their agitation, though. Here is the link to the article if you are interested. http://www.uthscsa.edu/mission/fall98/fading.html
DanielRomero, thank you and I too believe. If it wasn't for my christian friends I would be out of my mind by now. A big thank you to my pastor too, and I sure wouldn't forget my friends on agingcare. They too have been a big help.
Betty, I have already talked with Hospice. They said they have about 15 doctors and said they may take all of his meds. away from him. He has HBP. That could cause him to have a stroke or a heart attack. That would cause him more pain. They give them morphine until their body gives up. To me that is murder. If I let them do that to him I am as guilty as they are. We have to give an account one day and judgement will be on them. It is Gods choice to say when. Yes they can give meds. to help with the pain if there is any but not give them enough to kill them. Not at my wits end. Doing very well, my daughter is here helping a I get three days to myself. Hope you get my point.
So my question on here was: Husband has AD. He doesn't want to eat. My family said I should make him. What should I do?
I feed him what ever he will eat. But you can't make a horse drink water and you can't make a person eat if they don't want to.
Thanks Betty, I take it that you have never taken care of a person with AD. He is just as much like a child as he can get. This is what the doctors told me "that he would become like a child" but dealing with a two year old is some what different. With the 2 year old you can get them interested in something else. With someone with AD it is a little different. They are in their own world and when you can get into that world you are lucky. That is when they listen to you. But two seconds later they forgot what you said to them. They see things differently, colors are not the same and they don't know how close they are to something. They see things that are not there. He is always picking up an item that is not there and putting it on the floor. Talking to people that are not there. So many things I could tell you. It just isn't normal - their brain is shrinking. You can not reason with them. I hope this helps you understand a little about Alzheimer's. His brain isn't the same anymore He can not learn anything new nor remember what you say... His brain can't tell him he is hungry or that he has to use the bathroom.
I am sorry once again that you are going through this. You have taken care of your husband for such a long time. I can hear the love you have for him and the love your family has for him. By talking about hospice finishing the job, I do hear the desperation you have, so I wanted to address that issue first.
Something that is so interesting about what you said made it sound like you were dealing with a toddler. Forgive me and I don't mean any offense as I know your husband is still an adult who deserves his dignity and respect, but I saw some humor in the situation. When you wrote that he would not do anything you ask anymore, it did sound like a child. I am not for sure how you dealt with the "terrible twos" as so many refer to them. I personally do not like that term, because they are trying to explore and learn about their world, but so many try to stop them because it is inconvenient and they don't want to deal with the mess. I let my child have the run of the house so to speak - of course child proofed and protected her from danger - but really did not see her behavior as something that I wanted to curb. In many ways, because your husband doesn't know his world anymore, he is constantly trying in someways to explore it and figure out what it is. It is not really the same as a real toddler and is a state of confusion and agitation, but there is some parallel.
When I was taking care of both my parents at the same time, I often said I was caring for an infant (my mom who was totally bedridden and in diapers) and my dad who was a toddler (who could wonder about and get into messes.) It was a way I could lighten and see humor in a very sad situation. This might really be out there, but have you thought about sort of resorting back to how you dealt with raising your children and how you saw their exploration? Did you see it as normal and helped encourage it within safe boundaries or did you see it as a bad behavior that needed their hands smacked? Just as mothers of little children need an endless supply of patience and unconditional love, caregivers need a lot of the same. Parenting is very exhausting (especially when you are older and have health issues of your own like I do) and so is care giving for an adult.
What I am trying to say is that you are under a lot of stress and at your wits end. You have done so much for your husband. Please reach out and try to get more help and take care of yourself. Is nursing home placement an option? I certainly don't have the answers, but I believe you will find your own answers.
Thanks Jaye, No I do not force him to eat. When he shakes his head no I stop and ask him if he wants a drink. Maybe I will get an answer and maybe not. He never said anything about a feeding tube and that I will not do. I wouldn't do it because he is in the last stages of AD. So what would be the point. I have tried all kinds of drinks, coffee, tea, jucies, shakes, vit. drinks. The drinks with vitamins give him the runs. Ice cream, puddings and jello. Its AD that tells your body it is full. That is the reason he doesn't want to eat. Just remember he is in the last stages of AD. This is what happens. I have talked with the doctor about it.
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I was a Hospice nurse for ten years and can only support you in everything you are doing.
The body knows what it is doing and for the information of others. People do not deliberately starve themselves to death.
If you can keep the mouth clean and moist. Dentures should be well fitting, in or out don't make a fight of it. Quality not quantity is most import in the last stage of life. Leave a little snack of a favorite food at the bedside or chairside, something dry and unwrapped so it's easy to reach.
As far as bathing and hygiene are concerned no one needs to bathe every day so if your loved one resists get help and force it once a week if that does not cause obvious distress, otherwise sneak it in. For example a back rub can be very relaxing , but before you start that massage a good wash down of that area can be snuck in. To shave or not to shave does it really matter, yes if Santa Clause is rubbing his food in it and you find maggots! The one area that must have regular attention is the genital area which is especially important if there is any incontinence. Never mind the smell it is the rashes, bedsores and infection that need to be prevented. Try and maintain a regular bowel regime with diet and medication and potty train just like a baby.Keep a commode at the bedside.
For those who have a senior who messes in inappropriate places, many times it is out of misplaced resentment and the only thing to do to make like easier is to make a room where everything is easily cleaned and sanitized. Just move the good furniture and carpet out for the duration. Those saintly people who provide care in their homes for mentally disabled clients furnish their homes this way so accidents are quickly clean and nothing is ruined.
I hope this can help some caregivers and remember if you are doing your best that is always good enough. Kindest thoughts
Veronica
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Both my parents have dementia, maybe with alzheimers, the docs really aren't sure about mom.
My mom will eat 10 meals a day 'cuz she's so afraid she will forget to eat. My dad won't eat all.
My sister and I stay with them at ll times, we split shifts.
We are just now talking about nringing hospice in. As for the rest of your family members...to heck with them. I know most of our family members really don't know just how sick my parents are 'cuz they don't spend enough time with them to understand it.
I thnak God for my sister, cuz at least she gets it and we can talk about what to do next. We ignore the rest of the family. Unless they want to come on and help, they know squat.
Its none of their business.
God bless you too.
You are right. There is not anything to stop the progression of AD but death. You are doing a great job. I agree with Lilli, feed him what he will eat and keep him comfortable. When diagnosed at 71, my mother's wishes were to remain in here home of 48 years. 12 years later she is still there. When the time comes for God to call her home I hope I have the wisdom and strength you are showing during your husband late stage of his journey. You know what your husband would want and your posts show a great understanding of what is to come. God Bless.
Everyone who writes to me talk about everything except the family pushing me to make him eat. I don't have any problems other than what I have listed. He is a person with AD all that I have listed is what happens to them. I have been doing this for 6 years. Its the family I am having problems with about him not eating. It is part of the disease I tell them. I worked in a hospital with sick people and I know what I am doing. Nothing is new to me, except it is my husband. He is still walking and I have all the equipment I need. His meds? He has to have yhem, they are for his high blood pressure. He has been taking them for 40 years or more.
If you look up AD it will tell you they come to a time when they stop eating. The only thing left to do is tube feeding and that will not happen. His life is gone and he is just alive in body only. What kind of a life is that. He sees the doctor every two to three mos. There is nothing you can do for him at this stage of AD. My doctor knows everything that is going on with him. I do what he tells me. Thanks for your thoughts.
So back to your orgininal question. Do not force your Dad to eat. Give him nourishment when you can. Make his last days comfortable and tell the family to either back off or welcome him into their homes for a few days to give you respite.
I can sense that you are stretched thin....I wish for you better days to come.
Lilli
You really need to male him see a doctor that deals with the elderly.
My mother was on blood pressure pills, thyroid pills, as well as I kept her blood sugar monitored and gave her insulin. She even could receive antibiotics for an UTI.
Some patients and their families do not want all of this and do decide to discontinue all meds once electing hospice or even once they have been on a while. But again that should be the patient's or the patient's families decision and not forced on them by the hospice. Most meds are not needed while the patient is actively dying and then would be an appropriate time to stop them, but again the hospice should still respect the patient's and family's wishes.
You have given your husband more quality of care than he would have received even in the best home. I agree with your doctor "God Bless You."
Reba. I am sorry I am so long winded... I just have so much to share and I really do care. I just want to apologize. I did not mean to upset you. You do not need that. Please forgive me.
I am so sorry, but I have lost both of my parents who cared for and 8 babies.
Kitty
As long as my husband eats and he lets us feed him that is what we will do. We had a great marriage and three children. No I don not want him to die. That is the whole problem. I guess you don't understand unless it happens to you.
I think you referred to me as Betty. You also started talking about other things other than just the eating issue, so I assumed that meant there was more on your mind that just the eating issue. Everyone has their own experience and there is no way one person is totally going to understand what another person is going through. But there is some comfort, we can receive from others who are going through some of the same situations. From some of your posts, you really were sounding desperate and like you wanted to end your husbands life. It doesn't mean you literally would act on that impulse, but some people do.
Yes so have personal experience with AD, I have cared for both of my parents, as I said at the same time. Most of that time, I was by myself with very little help. My mother did not have AD, but a brain tumor. I cared for her for a total of 7 years from the start of the initial cancer. My father did have AD. Though both were very sad situations, the AD was for me the hardest. But I still had a spiritual connection to both regardless. I did not say those with AD were 2 years in the same sense, I was talking about the way that I found humor in the situation so I could go on. There are some AD doctors who have used techniques that parents use with small children to lessen their agitation, though. Here is the link to the article if you are interested. http://www.uthscsa.edu/mission/fall98/fading.html
Wishing you all much peace,
Kitty
So my question on here was: Husband has AD. He doesn't want to eat. My family said I should make him. What should I do?
I feed him what ever he will eat. But you can't make a horse drink water and you can't make a person eat if they don't want to.
Something that is so interesting about what you said made it sound like you were dealing with a toddler. Forgive me and I don't mean any offense as I know your husband is still an adult who deserves his dignity and respect, but I saw some humor in the situation. When you wrote that he would not do anything you ask anymore, it did sound like a child. I am not for sure how you dealt with the "terrible twos" as so many refer to them. I personally do not like that term, because they are trying to explore and learn about their world, but so many try to stop them because it is inconvenient and they don't want to deal with the mess. I let my child have the run of the house so to speak - of course child proofed and protected her from danger - but really did not see her behavior as something that I wanted to curb. In many ways, because your husband doesn't know his world anymore, he is constantly trying in someways to explore it and figure out what it is. It is not really the same as a real toddler and is a state of confusion and agitation, but there is some parallel.
When I was taking care of both my parents at the same time, I often said I was caring for an infant (my mom who was totally bedridden and in diapers) and my dad who was a toddler (who could wonder about and get into messes.) It was a way I could lighten and see humor in a very sad situation. This might really be out there, but have you thought about sort of resorting back to how you dealt with raising your children and how you saw their exploration? Did you see it as normal and helped encourage it within safe boundaries or did you see it as a bad behavior that needed their hands smacked? Just as mothers of little children need an endless supply of patience and unconditional love, caregivers need a lot of the same. Parenting is very exhausting (especially when you are older and have health issues of your own like I do) and so is care giving for an adult.
What I am trying to say is that you are under a lot of stress and at your wits end. You have done so much for your husband. Please reach out and try to get more help and take care of yourself. Is nursing home placement an option? I certainly don't have the answers, but I believe you will find your own answers.
Best regards,
Kitty