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gigi76
@gigi76

Posts: 8
Joined: Aug 19, 2016

Alzheimer's and DNR

Posted by @gigi76, May 11, 2017

My husband is 65 with Alz symptoms for past 5-6 years. He had a heart attack in 2013 and last year, cardiac arrest with a pacemaker inserted. His short term memory, executive functioning and vocabulary have decreased a lot in the past year. However, he still is pleasant, can shower, dress himself and groom with reminders of the next step. He can’t work anything mechanical. With his history of cardiac problems, I’m thinking about getting a DNR for him. I have Durable and Medical POA. I’ve talked to him about it, but I don’t think he realizes that another cardiac event could be in the near future. As we all know, each one of these types of events makes them worse. He was diagnosed with Alz at Mayo and tried Aricept, but had severe GI reactions and was taken off due to early kidney disease. He’s been through a lot medically in the past 10 years. Is it too early to be thinking about a DNR?

REPLY

Hi @gigi76,
In my opinion, it is never too early to be thinking about a DNR. It is not an easy discussion, but a necessary one. Thinking about this in advance means that you can rely on your decisions when the time comes. Gigi, I moved your message to the Caregiver’s group to bring others into the discussion who may be in a similar situation or have already been where you are now — members like @IndianaScott @macbeth @martha59 @clayton48 @ladycat @foxylady42.

Gigi, have you talked to a social worker or palliative care nurse about this?

Hello again @gigi76. You bring up a very good point and ask a very important question. In my personal opinion, I agree with @colleenyoung that it is never too early, especially with dementia or dementia-symptom diseases for advance directives, DNRs, etc. to be discussed, written, and put into place.

My wife had a DNR, which she decided upon, along with her POA, personal decisions regarding her funeral, etc. and put them in writing within days of her diagnosis. These actions on her part took a great deal of worry and potential difficulty away from her loved ones as her diseased progressed.

My MIL on the other hesitated on these decisions and then one day she was not cognizant enough and the opportunity was gone.

Again, just my personal situation, but I have my own POA, medical directives, living will, DNR, etc. all written and in place.

Peace and strength

Hello @gigi76 You are wise to be planning ahead. These decisions are difficult but also so very important. Colleen and Scott have provided you with some great ideas and directions. Your husband’s doctor might be able to put you in touch with a social worker or other professional who might be able to assist you in this decision. There are also elder law attorneys that you can consult who deal with this type of situation on a regular basis. Best wishes to you and your husband and keep in touch with us at Mayo Connect. Teresa

@gigi76
There are some similarities in our situations. My husband’s symptoms also began to show up at the same time his heart trouble did, too. He also has had a pacemaker, for nearly seven years. I have a durable POA. I am not sure of the difference between a durable and a medical POA. I have been under the impression that the durable POA covers medical decisions. In any case, I signed a DNR for him just last week. Even under the circumstances, it was not easy.

Since there is no cure, and the treatments are temporary, I am also seeking to have my husband’s pacemaker deactivated so that death may come more naturally, although, his pacer hardly paces, and one doctor said he should never have had it implanted in the first place. Due to the age of his pacemaker, he has not been able to have MRIs either, since it was implanted. It is not MRI compatible. This all effects treatment and diagnoses. From what I have read, pacemakers do not restart the heart the way a defibrillator would; however, it may prolong the dying process when a person is dying from an unrelated illness. I have not received support from his cardiologist, who suggested discussing it with his GP, nor from his GP, who states that he cannot support deactivation, because my husband is in “good shape”. I have, however, made an appointment with the specialist who can deactivate it, and hope she will not give me more grief. That appointment is months from now. I am told I can have it done with a POA anyway, but it would be nice to have some support. I do not understand the need to leave an artificial device in place, that could prolong this living hell for him or for anyone else, except that it means more income for the medical conglomerates that own the medical businesses where we receive care. Surely these doctors must realize that prolonging a hopeless situation is immoral, too.

Macbeth

@macbeth Thank you for your kind and thoughtful post regarding making difficult but important decisions. Teresa

@macbeth, have you considered talking to a palliative care professional about the pacemaker situation? Perhaps a social worker or ethicist specializing in palliative care may help you navigate these waters and to help make the doctors more accepting of providing the means for a comfortable death.

@colleenyoung

@macbeth, have you considered talking to a palliative care professional about the pacemaker situation? Perhaps a social worker or ethicist specializing in palliative care may help you navigate these waters and to help make the doctors more accepting of providing the means for a comfortable death.

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@colleenyoung

Thank you for that! I know just who to talk to!

Macbeth

@colleenyoung

Hi @gigi76,
In my opinion, it is never too early to be thinking about a DNR. It is not an easy discussion, but a necessary one. Thinking about this in advance means that you can rely on your decisions when the time comes. Gigi, I moved your message to the Caregiver’s group to bring others into the discussion who may be in a similar situation or have already been where you are now — members like @IndianaScott @macbeth @martha59 @clayton48 @ladycat @foxylady42.

Gigi, have you talked to a social worker or palliative care nurse about this?

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Yes and I am planning to talk to our primary when I go in a few weeks.

@IndianaScott

Hello again @gigi76. You bring up a very good point and ask a very important question. In my personal opinion, I agree with @colleenyoung that it is never too early, especially with dementia or dementia-symptom diseases for advance directives, DNRs, etc. to be discussed, written, and put into place.

My wife had a DNR, which she decided upon, along with her POA, personal decisions regarding her funeral, etc. and put them in writing within days of her diagnosis. These actions on her part took a great deal of worry and potential difficulty away from her loved ones as her diseased progressed.

My MIL on the other hesitated on these decisions and then one day she was not cognizant enough and the opportunity was gone.

Again, just my personal situation, but I have my own POA, medical directives, living will, DNR, etc. all written and in place.

Peace and strength

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Thank you, Scott. I’ve never thought of a DNR for myself, but we both have all of the other paperwork in place.

Liked by gigi76

@hopeful33250

Hello @gigi76 You are wise to be planning ahead. These decisions are difficult but also so very important. Colleen and Scott have provided you with some great ideas and directions. Your husband’s doctor might be able to put you in touch with a social worker or other professional who might be able to assist you in this decision. There are also elder law attorneys that you can consult who deal with this type of situation on a regular basis. Best wishes to you and your husband and keep in touch with us at Mayo Connect. Teresa

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Thank you, Teresa. I forgot to mention that my husband’s sister is a geriatric/hospice social worker. She is in favor of a DNR. I am, too, just sad to have to make that decision for my husband.

@hopeful33250

Hello @gigi76 You are wise to be planning ahead. These decisions are difficult but also so very important. Colleen and Scott have provided you with some great ideas and directions. Your husband’s doctor might be able to put you in touch with a social worker or other professional who might be able to assist you in this decision. There are also elder law attorneys that you can consult who deal with this type of situation on a regular basis. Best wishes to you and your husband and keep in touch with us at Mayo Connect. Teresa

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@gigi76 That is very understandable! Blessings for peace of mind. Teresa

@macbeth

@gigi76
There are some similarities in our situations. My husband’s symptoms also began to show up at the same time his heart trouble did, too. He also has had a pacemaker, for nearly seven years. I have a durable POA. I am not sure of the difference between a durable and a medical POA. I have been under the impression that the durable POA covers medical decisions. In any case, I signed a DNR for him just last week. Even under the circumstances, it was not easy.

Since there is no cure, and the treatments are temporary, I am also seeking to have my husband’s pacemaker deactivated so that death may come more naturally, although, his pacer hardly paces, and one doctor said he should never have had it implanted in the first place. Due to the age of his pacemaker, he has not been able to have MRIs either, since it was implanted. It is not MRI compatible. This all effects treatment and diagnoses. From what I have read, pacemakers do not restart the heart the way a defibrillator would; however, it may prolong the dying process when a person is dying from an unrelated illness. I have not received support from his cardiologist, who suggested discussing it with his GP, nor from his GP, who states that he cannot support deactivation, because my husband is in “good shape”. I have, however, made an appointment with the specialist who can deactivate it, and hope she will not give me more grief. That appointment is months from now. I am told I can have it done with a POA anyway, but it would be nice to have some support. I do not understand the need to leave an artificial device in place, that could prolong this living hell for him or for anyone else, except that it means more income for the medical conglomerates that own the medical businesses where we receive care. Surely these doctors must realize that prolonging a hopeless situation is immoral, too.

Macbeth

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Hello Macbeth, I’m sorry that you’re going through this, too. Honestly, if my husband’s arrest hadn’t happened so fast and I had more time to think, I may not have agreed to the pacemaker. From what I understand, the pacer doesn’t last forever, so I wouldn’t replace it. Is your husband still taking any cardiac meds for high cholesterol, blood pressure, etc.? I’ve thought of discontinuing his cholesterol med and he doesn’t take BP meds. In general, I feel that any further testing other than labs or xrays for an injury would be unnecessary. He is due for a colonoscopy next year, and the prep would be inhumane. This horrible disease! Hugs to you ((()))

@macbeth

@gigi76
There are some similarities in our situations. My husband’s symptoms also began to show up at the same time his heart trouble did, too. He also has had a pacemaker, for nearly seven years. I have a durable POA. I am not sure of the difference between a durable and a medical POA. I have been under the impression that the durable POA covers medical decisions. In any case, I signed a DNR for him just last week. Even under the circumstances, it was not easy.

Since there is no cure, and the treatments are temporary, I am also seeking to have my husband’s pacemaker deactivated so that death may come more naturally, although, his pacer hardly paces, and one doctor said he should never have had it implanted in the first place. Due to the age of his pacemaker, he has not been able to have MRIs either, since it was implanted. It is not MRI compatible. This all effects treatment and diagnoses. From what I have read, pacemakers do not restart the heart the way a defibrillator would; however, it may prolong the dying process when a person is dying from an unrelated illness. I have not received support from his cardiologist, who suggested discussing it with his GP, nor from his GP, who states that he cannot support deactivation, because my husband is in “good shape”. I have, however, made an appointment with the specialist who can deactivate it, and hope she will not give me more grief. That appointment is months from now. I am told I can have it done with a POA anyway, but it would be nice to have some support. I do not understand the need to leave an artificial device in place, that could prolong this living hell for him or for anyone else, except that it means more income for the medical conglomerates that own the medical businesses where we receive care. Surely these doctors must realize that prolonging a hopeless situation is immoral, too.

Macbeth

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@gigi76
Thank you, and the same to you.

My husband, too, was to have another colonoscopy, and I am not scheduling it, either. Yes, the prep would be very hard on him, but so would the sedation. As you may know, that may cause further decline, from which the patient may recover, or not, or only to a degree.

My husband stopped his statins long ago. Having read that they could affect memory, I really thought it was that, until he was shortly thereafter diagnosed with dementia. He has never had blood pressure problems.

His mental decline seems to have accelerated over the past year, but his body is still strong and healthy. This could go on for many years yet. I’m just not sure how long I can live this way. @IndianaScott, I don’t know how you did it. No matter how much you love someone, this is extremely difficult. When he was recently in the hospital (possible TIA) his neurologist commented that she didn’t think it would be five years – but, really, who knows.

Hugs to you, too, Gigi!

Macbeth

@macbeth

@gigi76
There are some similarities in our situations. My husband’s symptoms also began to show up at the same time his heart trouble did, too. He also has had a pacemaker, for nearly seven years. I have a durable POA. I am not sure of the difference between a durable and a medical POA. I have been under the impression that the durable POA covers medical decisions. In any case, I signed a DNR for him just last week. Even under the circumstances, it was not easy.

Since there is no cure, and the treatments are temporary, I am also seeking to have my husband’s pacemaker deactivated so that death may come more naturally, although, his pacer hardly paces, and one doctor said he should never have had it implanted in the first place. Due to the age of his pacemaker, he has not been able to have MRIs either, since it was implanted. It is not MRI compatible. This all effects treatment and diagnoses. From what I have read, pacemakers do not restart the heart the way a defibrillator would; however, it may prolong the dying process when a person is dying from an unrelated illness. I have not received support from his cardiologist, who suggested discussing it with his GP, nor from his GP, who states that he cannot support deactivation, because my husband is in “good shape”. I have, however, made an appointment with the specialist who can deactivate it, and hope she will not give me more grief. That appointment is months from now. I am told I can have it done with a POA anyway, but it would be nice to have some support. I do not understand the need to leave an artificial device in place, that could prolong this living hell for him or for anyone else, except that it means more income for the medical conglomerates that own the medical businesses where we receive care. Surely these doctors must realize that prolonging a hopeless situation is immoral, too.

Macbeth

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Hello @macbeth I just saw your post and wanted to send you a virtual hug and some e-strength! You are right. Caregiving is just plain tough and having no roadmap makes it ever more challenging. I wish your husband and you peace!

Remember –each day we can only do our best. Superman and Superwoman have left the building 🙂

Peace & strength

@macbeth

@gigi76
There are some similarities in our situations. My husband’s symptoms also began to show up at the same time his heart trouble did, too. He also has had a pacemaker, for nearly seven years. I have a durable POA. I am not sure of the difference between a durable and a medical POA. I have been under the impression that the durable POA covers medical decisions. In any case, I signed a DNR for him just last week. Even under the circumstances, it was not easy.

Since there is no cure, and the treatments are temporary, I am also seeking to have my husband’s pacemaker deactivated so that death may come more naturally, although, his pacer hardly paces, and one doctor said he should never have had it implanted in the first place. Due to the age of his pacemaker, he has not been able to have MRIs either, since it was implanted. It is not MRI compatible. This all effects treatment and diagnoses. From what I have read, pacemakers do not restart the heart the way a defibrillator would; however, it may prolong the dying process when a person is dying from an unrelated illness. I have not received support from his cardiologist, who suggested discussing it with his GP, nor from his GP, who states that he cannot support deactivation, because my husband is in “good shape”. I have, however, made an appointment with the specialist who can deactivate it, and hope she will not give me more grief. That appointment is months from now. I am told I can have it done with a POA anyway, but it would be nice to have some support. I do not understand the need to leave an artificial device in place, that could prolong this living hell for him or for anyone else, except that it means more income for the medical conglomerates that own the medical businesses where we receive care. Surely these doctors must realize that prolonging a hopeless situation is immoral, too.

Macbeth

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@IndianaScott What a great comment, “Superman and Superwoman have left the building.” Love it! Teresa

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