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I hope someone comes up with some good suggestions. We are having this challenge with my husband's father. He hasn't been diagnosed with AD, our observation is that he has memory problems but he refuses to go to a doctor so we're just trying to deal with the challenges as they come up. He has no teeth so meals have been one of the challenges, he spits out anything that is a "lump", even a very soft small overcooked piece of vegetable. Even home made chiclen/vegetable soup that has been pureed in the blender, last night he refused to eat that because he detected the meat fibers ... although I couldn't find them in my bowl of soup, the soup seemed smooth as honey to me. He is almost blind which means he can't identify what he is eating as well and so this probably fuels his fear. He did eat the cottage cheese and canned pears and a half home-made bisquit, both of which had more texture to them than the soup. Hope someone has some good ideas about meals.
Hi Reba----this is part of the stages of AD--there could be several reason why your Husband does not want to eat---he my have forget t, he may not be able to swallow, he may be unable to express his reasons. I am sure this is fustrating for you. There are some medication to increase his appetite-if that be the issue. An excellent resourse is to sign onto a website called -agingvcare,com---as it deals with spousal interactions when one of them has AD...You may be able to identify as well as leave your thoughts and comments on their board... Best of luck to you on your journey as caregiver to your husband-and whatever does happen-TRY to get as much support as possible- A great place to start is with the Alzheimer's Association... I have been thru this journey as well-and in my case it was with my Mom--I shortly after formed my own caregivers group on line-and now I give back all the great suggestions that I have learned. You may feel isolated and alone--but this forum is an example of all the caring people out there. Hap
hapfra, I have been with agingvcare,com for a long time. I think I have talked with you before. Thank you for your input. I know it is from AD. I don't want to give him medication to increase his appetite or do I want to prolong his life. He has no problems swallowing. I want nature to do the job in taking him to a better place. Why try to keep him alive? What kind of a life does he have? Spits, pees and has bowl movements where ever he wants. We have to watch him like a hawk. 60 seconds out of the room and he did a job on the sofa. Peed on the coffee table. He feels everything in the room. That is AD. But what I ask is how do I get my family to understand and to back off. You can't make him eat or drink if he doesn't want to. He sees his doctor every 2-3 mos. He is being taken care of as well as we can. But to make him eat that I will not do. Thanks again for getting back with me. Reba
It really does depend on the reason for refusal to eat and which stage of AD the patient is in. The best place to start is speaking with his doctor to rule out a medical reason that might not have anything to do with the AD.
My dad would only drink chocolate milk (or ensure) for most of the last year or two he lived. My husband's grandmother, though she did not have AD always wanted my father-in-law to bring her Yahoos for several months before she died and goobled up the box of chocolates I brought on our very last visit before she died a couple weeks later. I took care of my mother who had a brain tumor and we went through some eating issues, too. I am now a mother to a 3 year old and some days it is very similar. But as with a small child, they do not always need as much to eat as they did before especially if they are terminal and as their body shuts down. It could also be about control issues, just as it can be with a small child. Whatever the reason, it is very difficult to watch because as a caregiver, we feel nourishment is a big reflection on our ability to nurture our loved one.
I would suggest until the doctor can rule out other causes and give more direction, to try some ensure shakes and smoothies. Best regards, Kitty
DanielRomero, Thank you I have read that before. Most of it doesn't work. When they decide to stop eating there is nothing you can do. Sat for an hour just to get some food in him.
I am also sorry that I did not add that I would not force him to eat either. If he really is in the terminal stage, that is not the way to go and your family and friends need to understand this, too. This is so hard for loved ones to understand and accept. I think it is part of the denial stage of grief.
Thank you Kitty, I agree 100%. But they should know I am doing my best. I hate the thought that he will stop eating one day and there isn't anything I can do for him then.
Dear Reba----If for some reason your family cannot understand all of this--then it is their problem and definately not yours. Once again I think by your reply you need support and lots of it either by the Alzheimer's Association---or evevn hospice, if he is eligible. Both will give suggestions to you on how to move forward with these questions-and also, at some level give you some peace of mind....there is no magic answer to resolve matters---If you are spiritual you may even want to turn to that for some answers. The entire situation is not good at best. But perhaps accepting matters-quietly and peacefully will be of some help..once again try the website--the alzheimer's spouce...I strongly suggest this. Best to you - your family- and your husband. Hap
Reba, I am so sorry you are going through this and your husband, too. I can hear that you feel the fact he is not eating reflects on what you are doing for your husband and you feel as if once he stops eating there is nothing else you can do for him. Impending death starts seeming more of a reality once someone no longer eats and though you are very distressed to see him as he is right now and you know he will not suffer anymore once he is dead, it is still something you do not want yet. You are still saying good-bye to the husband you knew who is still in his body, but has not really died yet. Loved ones with AD die twice it seems. You are in a state that is so surreal. I believe you will be able to reach a peace and calm about all of this before he dies and he will be at peace, too. It can seem like such a long, never ending journey in the darkness of the night to get to the light of morning, but morning will come.
You seem to be stressed also by your family's opinion about forcing him to eat as if they think you are not doing enough. Hopefully they know that you are doing your best, but may be they too are clinging to hope. Food also seems to come into play when you become a new mother regardless of what you chose to feed your child, someone always has an opinion and tries to give you advice as if you could not know what is best. But just as a new mother needs to have confidence in her own abilities and allow others to know that you are the one deciding what is best because you know your child best, you need confidence caring for your husband, too.
Has your family been helping you to take care of your husband and giving you some respite? May be you should ask them when is the best time for them to come over and feed him (or watch him so you can rest) and then give them a few meal times. Don't ask if they can, but when should you expect them. They will either agree to help or they will back down.
There is so much more you do for him than just feed him. You know the list better than anyone. But the most important thing you do is just being there for him and holding his hand (when you can), even if you don't think he is aware - this is more important than all the physical elements of care you might do for him. That connection you have that will not be broken due to his mental state is there. You are doing the best you can. You are a wonderful person for doing what you are doing. Please know that. But also please make sure you are getting support and help and taking care of yourself, too.
kitty, No I welcome death for him. I have no guilt because I have done my very best for him for six years and I might add with no help. But my sister started helping and my daughter just move in with me. Her husband and my daughter are great with him. He is starting to get nasty and today he hit me with his fist on my arm. He was pouring coffee on the table and I made him stop. He no longer will do as we ask. He has AD but we are the ones suffering from it. He just dosen't know what is going on. AD doesn't come with pain thank God just for the ones that are caring for him..
I have told them when he stops eating that is when we are done. Will not use feeding tubes. Not at this stage of AD he is in. Why prolong it. I have POA and that is what I have told them. What I say is the way it will be.
Hospice I understand will finish the job. That is what they did with my friend. Told us they would not let her go past 9:30 and she didn't. Better they finish the job because if I did it I would go to jail. I know a person who worked for them so I am not telling something that isn't true.
Reba, I am a spiritual person and believe in an afterlife. I also believe that death for a severe AD sufferer is freedom, sunshine on a rainy day. You are a strong woman and your husband is extremely blessed to have you. Good tidings to you.
Trying to force someone to eat is really not appropriate. Did you have those "tough discussions" when he was first diagnosed? Does he want a feeding tube? I think I would offer nutritious, soft food frequently if he refuses at least you know that you tried. I would make sure that you give him good oral care. Swab his mouth and keep his lips moist. Aspirating food into his lungs would be terrible for both of you so I would encourage you not to force him! My Dad told me everything tasted like sand when he was ill. One thing I was able to get him to drink which he really enjoyed was a Strawberry/banana smoothie. You could try that, it seemed to slide down and taste good to my Dad.
Reba, I am aware that some in hospice do things like this and have done this to people against their will and the will of their family as well, but I would advise you to go to the Hospice Patients Alliance web site and even talk about your feelings with Ron Panzer. He is a hospice nurse. I know you and your family are suffering, but to end his life with the administration of morphine when he is not in pain to end his life is in the eyes of the law murder. You know this as you have admitted it. Some people see it as mercy and it is a very controversial subject. And yes most likely hospice would get away with it. They usually do, but that does not make it right. You are exhausted and at your wits end. He may very well be terminal and if he is having problems even tolerating food that might be what it is. I am sure what I am saying does not feel like it is helping or even inciting you, but I know what a peaceful death can be like even when AD is involved. If you can take some time away from the situation to really think about this. Is it possible to find a nursing home offering respite care. I know it is not always easy to find help or solutions, but give yourself a little space.
Again I am so sorry you are going through this. Kitty
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.
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 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.
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.
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.
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
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.
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
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.
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.
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."
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Best of luck to you on your journey as caregiver to your husband-and whatever does happen-TRY to get as much support as possible- A great place to start is with the Alzheimer's Association...
I have been thru this journey as well-and in my case it was with my Mom--I shortly after formed my own caregivers group on line-and now I give back all the great suggestions that I have learned. You may feel isolated and alone--but this forum is an example of all the caring people out there.
Hap
My dad would only drink chocolate milk (or ensure) for most of the last year or two he lived. My husband's grandmother, though she did not have AD always wanted my father-in-law to bring her Yahoos for several months before she died and goobled up the box of chocolates I brought on our very last visit before she died a couple weeks later. I took care of my mother who had a brain tumor and we went through some eating issues, too. I am now a mother to a 3 year old and some days it is very similar. But as with a small child, they do not always need as much to eat as they did before especially if they are terminal and as their body shuts down. It could also be about control issues, just as it can be with a small child. Whatever the reason, it is very difficult to watch because as a caregiver, we feel nourishment is a big reflection on our ability to nurture our loved one.
I would suggest until the doctor can rule out other causes and give more direction, to try some ensure shakes and smoothies.
Best regards,
Kitty
The entire situation is not good at best. But perhaps accepting matters-quietly and peacefully will be of some help..once again try the website--the alzheimer's spouce...I strongly suggest this.
Best to you - your family- and your husband.
Hap
I am so sorry you are going through this and your husband, too. I can hear that you feel the fact he is not eating reflects on what you are doing for your husband and you feel as if once he stops eating there is nothing else you can do for him. Impending death starts seeming more of a reality once someone no longer eats and though you are very distressed to see him as he is right now and you know he will not suffer anymore once he is dead, it is still something you do not want yet. You are still saying good-bye to the husband you knew who is still in his body, but has not really died yet. Loved ones with AD die twice it seems. You are in a state that is so surreal. I believe you will be able to reach a peace and calm about all of this before he dies and he will be at peace, too. It can seem like such a long, never ending journey in the darkness of the night to get to the light of morning, but morning will come.
You seem to be stressed also by your family's opinion about forcing him to eat as if they think you are not doing enough. Hopefully they know that you are doing your best, but may be they too are clinging to hope. Food also seems to come into play when you become a new mother regardless of what you chose to feed your child, someone always has an opinion and tries to give you advice as if you could not know what is best. But just as a new mother needs to have confidence in her own abilities and allow others to know that you are the one deciding what is best because you know your child best, you need confidence caring for your husband, too.
Has your family been helping you to take care of your husband and giving you some respite? May be you should ask them when is the best time for them to come over and feed him (or watch him so you can rest) and then give them a few meal times. Don't ask if they can, but when should you expect them. They will either agree to help or they will back down.
There is so much more you do for him than just feed him. You know the list better than anyone. But the most important thing you do is just being there for him and holding his hand (when you can), even if you don't think he is aware - this is more important than all the physical elements of care you might do for him. That connection you have that will not be broken due to his mental state is there. You are doing the best you can. You are a wonderful person for doing what you are doing. Please know that. But also please make sure you are getting support and help and taking care of yourself, too.
Best regards,
Kitty
I have told them when he stops eating that is when we are done. Will not use feeding tubes. Not at this stage of AD he is in. Why prolong it. I have POA and that is what I have told them. What I say is the way it will be.
Hospice I understand will finish the job. That is what they did with my friend. Told us they would not let her go past 9:30 and she didn't. Better they finish the job because if I did it I would go to jail. I know a person who worked for them so I am not telling something that isn't true.
I am aware that some in hospice do things like this and have done this to people against their will and the will of their family as well, but I would advise you to go to the Hospice Patients Alliance web site and even talk about your feelings with Ron Panzer. He is a hospice nurse. I know you and your family are suffering, but to end his life with the administration of morphine when he is not in pain to end his life is in the eyes of the law murder. You know this as you have admitted it. Some people see it as mercy and it is a very controversial subject. And yes most likely hospice would get away with it. They usually do, but that does not make it right. You are exhausted and at your wits end. He may very well be terminal and if he is having problems even tolerating food that might be what it is. I am sure what I am saying does not feel like it is helping or even inciting you, but I know what a peaceful death can be like even when AD is involved. If you can take some time away from the situation to really think about this. Is it possible to find a nursing home offering respite care. I know it is not always easy to find help or solutions, but give yourself a little space.
Again I am so sorry you are going through this.
Kitty
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
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.
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
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 am so sorry, but I have lost both of my parents who cared for and 8 babies.
Kitty
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.
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."