@colleenyoung

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

Macbeth

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?

@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

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!

@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