My dad died from dementia a few years ago. Well... he more starved because dementia robbed his ability to swallow properly. Time from official diagnosis to death was about 11 years.
I've hesitated posting in this thread as I don't have much interest in re-living any of it, but seeing what some of you are going through at the moment... I'm hoping some of what I learned can help:
- They call it 'the long goodbye'. This is accurate. It changes you. And it's brutal.
- Quality of care and life are your first priorities. This applies to everyone directly involved.
- Once your loved one is officially diagnosed with alzheimers/dementia, start looking into long term care. You do not need to feel guilty about this. Anyone who makes you feel this way (maybe outside of the spouse) can GTFO.
- It's rarely ever pleasant, but they need the help and it takes a while to get them into a proper home.
- Do your research on which facilities work for you. Some are pretty bad. Visit them and if something smells funny (figuratively and literally), GTFO.
- The family caregiver(s) needs to be the health advocate. Everyone else can GTFO.
- Visit often, be nice to the PSW's. They do most of the work.
- You will experience and see things you don't want to see. Be prepared for this.
- Try not to get frustrated at bad days because this is a marathon. Take full advantage of lucid moments while you still can.