This is the final stage of the dementia journey. It may take years for your loved one to reach this stage, or it may be very quick. Prepare during the early years of their diagnosis to help both you and your loved one through this difficult stage.
“I’m 87 years old now and my wife is 85. Sometimes she seems completely fine, but then the next thing you know she gets lost in our own bathroom. Sometimes she asks me “Who are you?” and doesn’t believe me when I tell her it’s me, her husband who’s been taking care of her all these years. She hasn’t had a proper bath for several years now, since she won’t let some ‘strange man’ help her. It’s really, really hard. When I try to get someone else to help her, she just sends them away too.”-Aubrey, Long-term caregiver, Northern Nevada
You may be wondering:
- What can we do to increase our loved one’s quality of life?
- Which type of care is best for my loved one at this time?
- What types of medical care do we prefer at the end of our loved one’s life?
What should you expect at this stage?
In the late stage, your loved one is completely dependent on others for personal care activities. They may also:
- Not recognize you or others by name. This does not mean they don’t know (or feel) who you are.
- Have increased difficulty communicating—may use “word salad” (mixed up words), or be speechless. Nonverbal communication may work best.
- Be frequently or totally incontinent.
- Experience changes in physical abilities including ability to walk, sit and eventually swallow.
- Have rigidity, immobility, jerks or seizures.
- Be feeling deep emotions and may scream, moan, or fall.
- Be vulnerable to infections, especially pneumonia.
At the same time, you may also notice that they are still attuned to the emotions of others, enjoy companionship, respond to physical touch or music, and can encourage others to slow down and focus on the present.
- Experience profound grief.
- Become aware that the end-of-life for your loved one is near.
- Find that friends and family are also experiencing grief.