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?

@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?

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@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
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

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@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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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!

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@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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@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

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@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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Dearest, @macbeth. Thank you for finding the time to write to us. I had my suspicions that your silence was an indication of having your hands full and being run off your feet. As Scott has said many times, caring for a loved one is darn hard work. It takes its toll. I can only imagine how hard it is to sleep with him in the care of others and that your mind is constantly with him. But sleep would be so good to catch up on now while you can (in theory at least). I wonder if you might consider asking your doctor for a sleep aid to help you catch up. I’m not a medical professional. I suggest this only as a lay person. What I do know is that catching your breath and getting sleep if you can will help you be prepared for the next phase whatever it may bring.

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@colleenyoung

Hey! Thanks for the suggestion! I had totally forgotten that I used to, occasionally, use melatonin, to help me sleep – just half of a 5 mg tab worked great for me. That’s what I’ll try again.

Macbeth

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@macbeth

@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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@macbeth I am glad that you have found some tangible support in the midst of this – even if it wasn’t from the people you expected.
The fact that you can find a “grin” in the middle of this is a very good thing – blessings and peace! Teresa

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