Hello all you experienced caregivers. I'd like to know how different peoples alzheimers journey went. How long you loved ones suffered? How long did it take them before they were in oblivion and did realise the had the disease? Was it incredibly painful for them? My mum is in her third year of mixed dementia. She has been struggling for some time because she's aware she's lost her memory and is devastated! Shd still puts on make up everyday and chooses lovely clothes bug memory has GONE. Im so sad for her and just want her journey to be easy and as stress free as possible. Do some people remain 'stable' foe many years? Or is it inevitable going to esculate rapid? Would love to hear your experiences.
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To answer your question more specifically, Mom's memory loss diagnosis happened two years before Dad's, and neither of them were diagnosed particularly early in the disease. It took more than a year, in both cases, for us to realize that something was seriously wrong. That's the part Pam is talking about, where the family doesn't do enough to get things under control quickly, because of the spouse covering up, denial, or the family just not realizing exactly what's happening. In our case, we were all focused on her memory loss as his executive function/thinking began to deteriorate. But on the positive side, it has taken several years for them to get to the point where they needed to be assisted with their activities of daily living, and in part that was accelerated by physical limitations and isolation.
Early on you will see the "angry phase", where they know they are losing it and frustration runs high. Anxiety meds help. It is also the time when spouses cover up for them, family makes excuses and nothing gets done. Too many families wait until Grandpa spends all his money or totals his car.
Patients do not remain stable or static; relatives who say this are often in denial. Decline is gradual, but noticing it comes on as a complete surprise for all too many adult children. We don't want to think it could happen.
Eventually the angry phase disappears, because the patient can no longer remember what they were mad about. BUT they do pick up YOUR anxiety and your shortened fuse and return fire spit for spit. If you need anxiety or BP meds, get them and keep two people calm by using them. Honest.