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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.
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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
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.
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.
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.
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.
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.
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. .
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.
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, 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
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
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
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.
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.
God bless you too.
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