About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (84)

Jul 10, 2017 · Alzheimer's and DNR in Caregivers: Dementia

@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

Jul 10, 2017 · Alzheimer's and DNR in Caregivers: Dementia

@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

Jul 10, 2017 · Alzheimer's and DNR in Caregivers: Dementia

@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

May 24, 2017 · Alzheimer's and DNR in Caregivers: Dementia

@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

May 12, 2017 · Alzheimer's and DNR in Caregivers: Dementia

@colleenyoung

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

Macbeth

May 12, 2017 · Alzheimer's and DNR in Caregivers: Dementia

@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

Apr 23, 2017 · Meet fellow Caregivers - Introduce yourself in Caregivers

@ihatediabetes
I am sorry for your experience. Such comments are rooted in lack of life experience, and are self-centered. Rather than seeing someone who needs assistance and caring, they think of themselves; they are concerned more with their own experience as a mere observer than with the needs of the person who is unable to help themselves. Maybe, at some time, someone in their life will point that out to them, or, perhaps, karma will roll around one day, and they will ache for someone they love under similar conditions – not that you would wish that on anyone, but it does seem to work that way.

Wishing you strength!

Macbeth

Apr 23, 2017 · Meet fellow Caregivers - Introduce yourself in Caregivers

@colleenyoung

I am not seeing Sharon’s post.

Macbeth