Re: Alzheimers spouse
KenBob's advice is so useful, I found myself rereading it a few times. And of course, I've been exactly where Soonerfan is now. Interestingly, it was also speech that was affected with DH too. I've read that this often happens with the early onset cases, and that in some respects it appears to attack different parts of the brain than the typical Alzheimers. Ultimately we all end up in the same place though.
The increasing loneliness and isolation is made worse by the loss of sleep and fear about the future. It just builds and builds. I relate to KenBob's description of the process. By the time DH was admitted into a NH, I was desperate. DH's day care arrangements were no longer able to manage him, I was getting about three hours of intermittent sleep, since DH catnaped instead of sleeping. He was incontinent (destroying the rugs and furniture), and I was missing so much work that I was afraid it would affect my ability to support everyone. He was constantly anxious, and needed someone with him every minute.
I was glad that I had done so much of the groundwork in the year or two before we reached that point. I generally knew what to do. I had already collected all the paperwork for the lawyer who assisted me with the Medicaid application, and knew all of my rights (good thing, since the NH admissions office wasn't 100% truthful when advising me). We were on some NH waiting lists although I actually knew that the lists were so long that I didn't expect a call for months. I knew that we could "pass" if his name came up, but I just wanted to be ready. I had talked to our family doctor, who was prepared to admit DH to a hospital for tests...so that he would be eligible on a priority basis for the next open bed at the NH. Our doctor gave me advice about how to handle the hospital and how the tests would be scheduled, to prevent the hospital from trying to discharge him before a placement had been found.
Even with all the preparation, there were surprises. I felt unprepared at least a dozen times each day, despite knowing that the NH was going to be inevitable.
I remember KenBob letting me know that I had to give it time. It was at least six months before I started to sleep again most nights after DH was in the NH.
It broke my heart, but I saw that DH did better in a NH with experienced 24-hour caregivers. His world in the NH was better than his world sitting in the house with one or two exhausted caregivers. He has the freedom of his ward, an activities director who tries her best with these Stage 7 patients, aides who tolerate his constant pacing and handle his personal care well, and nurses who monitor his health and medications. Yes, he went through an angry stage and made it clear that he wanted to leave. (He even managed to follow a maintenance man outside through two sets of locked doors once...but then he couldn't understand what an elevator was, so it was clear that he was a patient...). It took about 6 months before he fully settled into the NH.
As his illness has progressed even further, the routines of his ward give him a safety that I could not provide at home. I am still learning. It's difficult to find someone else sleeping in his bed since the patients don't know the meaning of "mine" and "yours." It's hard to see him stand nose-to-nose to someone, since the patients don't understand "personal space." I went though a stage when some of the elderly women insisted DH was their husband.
KenBob is absolutely correct. You learn that you are stronger than you ever thought possible. You will face many challenges. All you can do is to try your best, and let others help you.
Last edited by Beginning; 07-25-2011 at 03:47 PM.