1. < Caregivers: Dementia

Alzheimer's and DNR

Posted by gigi76 @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?

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 24, 2017
In reply to @hopeful33250 "Hello @gigi76 You are wise to be planning ahead. These decisions are difficult but also so..." + (show)
@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

REPLY
gigi76 | @gigi76 | May 24, 2017
In reply to @macbeth "@gigi76 There are some similarities in our situations. My husband's symptoms also began to show up..." + (show)
@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 ((()))

REPLY
macbeth | @macbeth | May 24, 2017
In reply to @macbeth "@gigi76 There are some similarities in our situations. My husband's symptoms also began to show up..." + (show)
@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

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | May 24, 2017
In reply to @macbeth "@gigi76 There are some similarities in our situations. My husband's symptoms also began to show up..." + (show)
@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

Jump to this post

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

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | May 25, 2017
In reply to @macbeth "@gigi76 There are some similarities in our situations. My husband's symptoms also began to show up..." + (show)
@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

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jul 10, 2017
In reply to @colleenyoung "@macbeth, have you considered talking to a palliative care professional about the pacemaker situation? Perhaps a..." + (show)
@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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Hi @macbeth, I wanted to check in with you to see how you are doing? Did you get some answers about your husband's pacemaker?

REPLY
macbeth | @macbeth | Jul 10, 2017
In reply to @colleenyoung "@macbeth, have you considered talking to a palliative care professional about the pacemaker situation? Perhaps a..." + (show)
@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.

Jump to this post

@colleenyoung
Hello,

So much has happened in the last few months: On Mother's Day, my husband had (probably) a TIA, I took him in, and he was sent from our small-town hospital to the VA hospital, 45 miles away, since we have no neurologist here, and he already has one there. He was there through that Tuesday or Wednesday, and recovered much strength. During that stay, the cardiologist he had, happened to be same doctor who implanted his pacemaker at another hospital in the same town, years earlier. After my husband's interviews with the neurologist and inpatient psychiatrist, who did not agree on the patient's progress level, I was told that he, of course, could never be well again, not to do anything to prolong his life in this state, and that he really should be in a facility with 24 hour care. I was not convinced of putting him in a facility at that time, but did talk to the cardiologist about deactivating the pacemaker, which He did, at my request and POA. I must also tell you that the pacemaker had no record of pacing for him, for the past several visits to the clinic - about two years. So, they thought the point was moot in his case anyway.

Then, Memorial weekend was horrible. My husband had reached a state of almost constant hyperactivity - staying up later and later, getting up earlier and earlier, active all day and all night. For weeks and months I was averaging 3 - 4 hours of sleep per day and night. I had, in a long thread of emails, requested of doctors at the VA to prescribe a mild sedative for him, but was told that they no longer treat dementia/Alzheimers that way, and they just kept trying other antipsychotics. So, that next Tuesday, after I was at my wits end, I packed a small bag and took him to the ER at the VA. He was there for three weeks, in a psych unit, since it is locked, and he could wander to his hearts content but remain safe. The inpatient psychiatrist and SW finally convinced me that he needed to be in a facility where he could be cared for 24/7, so he went, upon release, to an assisted living memory care facility in our home town, and now to a different one attached to a local, VA contract nursing home. We do not yet receive and financial help for this, but if his disability gets bumped up to 70% or more, or if he qualifies for Hospice, they will pick up the bill. In the mean time, everything we have worked for is slipping through our fingers like water. I have filed more claims with the VA in an effort to get some help.

I still don't sleep at night, thinking of him sleeping alone and vulnerable, wondering if he can get to the bathroom in the night by himself, if he is getting the help he needs when he needs it. We're both sad and depressed. In his few moments of clarity, he assures me that he understands, and that it's not my fault. He falls more and more often, and his physical and mental decline has advanced rapidly in the past few months.

Macbeth

REPLY
Mentor
Scott, Volunteer Mentor | @IndianaScott | Jul 10, 2017
In reply to @colleenyoung "@macbeth, have you considered talking to a palliative care professional about the pacemaker situation? Perhaps a..." + (show)
@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.

Jump to this post

Hello @macbeth Sounds like your journey has been a very challenging one lately. I am sorry to hear of your husband's declining condition. While I am sure the decision to have your husband in a facility was a tough one, it is a blessing you have one near to you that had room. They will be able to watch him with the 24/7 sets of eyes he seems to need.

Dementia is such a heartrending disease and one that reaches out and touches so many.

I wish you peace and strength as you continue in this journey. It certainly is not an easy one, nor is it one with preset or predetermined decisions and timelines.

Be strong!

REPLY
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jul 10, 2017
In reply to @colleenyoung "@macbeth, have you considered talking to a palliative care professional about the pacemaker situation? Perhaps a..." + (show)
@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.

Jump to this post

@macbeth Thank you for sharing this very difficult story with us. You describe the situation and your feelings so well. It helps us all to understand how difficult this stage of a disease can be. Keep in touch with us as you can. Do you have a support system of family and friends nearby? Teresa

REPLY
macbeth | @macbeth | Jul 10, 2017

@hopeful33250

Well, they have not been helpful, but they have been emotionally supportive, verbally. I have also, through this, reconnected with some former co-workers and business people who have actually been more supportive than my friends and family (!).

After I pressed "send", I thought I should have signed it Macbeth The Miserable! At least I can grin a little at that!

Macbeth

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