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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
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 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.
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 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.
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
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.
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.
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.
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
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
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
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.
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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
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 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
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
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
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