How to Help the Person in Your Care
Changes in memory/other thinking skills
The range of what's remembered shrinks further. The person you're caring for may have a harder time retrieving even early memories now. Names and faces of close family members may go unacknowledged -- although the main caregiver(s) tends to be recognized the longest. The person may get lost in his or her own home.
Urge friends and family not to take it personally if they experience little recognition. It's not a reflection of the quality of their relationship.
Don't leave the person unsupervised for any period of time.
Continue "reminiscence therapy" with someone still verbal. Show a tangible object (not a photo or papers that must be read) representing a past interest: a flower, a toy doll or tractor, a tool. Talk a little about it: "Look, Mom, some yarn. You sure made a lot of amazing sweaters in your time." She may take the bait and respond, or say little. But you may still spark a smile from a triggered memory.
Communication grows harder. People generally speak less and less through the last stage of dementia. Some use nonsense speech -- strung together words or syllables that sound more like babbling than talking. Variations: singsong, continual moaning not linked to pain, crying.
Continue your own natural, respectful speech. Hearing isn't affected by the dementia, and you're apt to still be understood.
Tune into what's being said through body language. Grimaces, frowns, smiles, and so on speak volumes.
Ignore singsong and nonsense speech, especially if it seems to be a self-soothing device. It's best not to use baby talk back, though.
Changes in emotions/insight
Disappearing self-awareness makes everything seem worse. Your loved one's' condition may seem to decline suddenly, with poorer memory, weakened mobility, little initiative or judgment, a less helpful attitude in personal care -- even fewer annoying, odd behaviors (wandering, restlessness). What's happening: Losing one's sense of self affects the degree and quality of participation in all aspects of life.
Review your care plan. Know that this decline, which can be alarming, doesn't necessarily mean the end of life is very near, only that you've entered a new stage.
Use your voice, your touch, and your loving attention to connect. Know that emotions are still felt: fear and security, uneasiness and calm, sensing disrespect or love.
Consider introducing a stuffed animal, blanket, or doll as a self-soothing item.
Changes in physical function/personal care
Expect more medical complications. A growing brain-body disconnect (including reduced mobility and incontinence) leaves the person more vulnerable to such health issues as infections, pressure ulcers (bed sores), breathing difficulty, aspiration pneumonia (from inhaling food), and falls or fractures.
Stay attuned to signs of pain that may not be communicated with words, such as a grimace when moved a certain way.
Talk to your love one's doctor about palliative care, which emphasizes pain relief and comfort care for people who aren't yet candidates for hospice.
If feeding problems develop, explore options other than feeding tubes. Feeding tubes have not been shown to prolong life and can cause both complications and emotional turmoil. Learn alternate ways to feed someone with severe dementia.
Be vigilant about turning the body and exercising limbs for someone limited to a chair or bed to reduce the risk of blood clots and pressure sores.
How to Take Care of You
Grieving is understandable, important, and necessary now. There's no way to know how long severe-stage dementia will last, but it is the final phase of a terminal disease. Studies confirm that sadness, mood swings, longing for the past, guilt, and other dark emotions felt now -- called anticipatory grief "“ are the same as "real" grief.
Let yourself mourn, rather than holding it in all the time. Anticipatory grief can actually soften the pain of emotions following death.
Do put on your "brave face" in front of your loved one with dementia, but find other places to unload your grief. Depression is a real risk now. If friends don't feel sufficient, this is a great time to try the emotional outlet of a professional therapist or counselor.
You need specialized support, 24/7. If you haven't explored out-of-home care or hospice care yet, now is the time. The round-the-clock needs of severe-stage dementia often exceed what families can handle at home without extensive (and typically expensive) support. At least check your options.
Call your local Area Agency on Aging to find out about end-stage dementia housing, stepped-up home care, and hospice programs near you.
Long-distance caregivers, especially, may find a geriatric care manager to be a handy alternative to being there in person -- to be their eyes and ears, and health advocate, for a relative in a care facility.
You need and deserve guilt-free time away, more than ever. Whether you're providing more or less hands-on care now, the emotional toll remains high. And long-term stress is especially dangerous.
Set aside feelings of guilt and obligation to regularly step out of an intensive-care situation. You're being smart, not traitorous. It's a health issue, plain and simple.
Consider a long-term commitment: taking a class, volunteering, or adding a part-time job. You may feel your "job" is to remain at the side of the person with dementia, but it's also important to set the stage now for resuming a post-caregiving life of your own.
It's not premature to begin final arrangements. "The long good-bye" eventually ends with a permanent good-bye. Making plans for that day doesn't "jinx" anything or make you a bad person. It can actually ease stress both now and later.
Begin to informally discuss funeral and burial plans with immediate family. This lets you brainstorm together and work through conflicts now.
If your loved one is a veteran, explore free burial programs in national cemeteries.
Consider drafting a eulogy, obituary, and/or photo/video memorial. Contrary to being morbid, the task can actually help ease stress now (as you think about the person in a positive light) and later (because you'll have done much of the work when time constraints were less pressing).
How to Build Your Family/Support System
Others may find it easy to criticize, hard to collaborate. Decisions that are potentially divisive -- about medical care, housing, finances, and final arrangements -- lie ahead. Because they're emotionally fraught, old clashes and differences that might exist in your family may come to a head. Communication now can sidestep clashes later.
Explain that experts agree there's no single "right" way to handle dementia care. You can only do what seems best at the time.
Ask critics to stick to describing what they dislike about the situation, not about you personally. You're already doing the best you can, but try to be open to ideas that could make things easier for everyone.
Respect others' viewpoints -- everyone has a different relationship to the person with dementia. But insist that your ideas are respected as well.
Bring in third-party experts, such as a trained family mediator, to help navigate tough choices as a group. Cheaper alternative: a family friend or trained clergyperson who can be neutral.
What seems like lack of support may be lack of understanding. It's hard to relate to severe-stage dementia unless you see it firsthand. If friends and family have drifted away, they may need a nudge to provide emotional, practical, or financial aid.
Share what you see. As much as you can, regularly and candidly update others. Even when there's no change, it's a reminder you're still at it. Share links about what happens in severe-stage dementia.
Encourage others to spend time with the person who has dementia. Some things have to be experienced to be believed.
Ask for what you need. Help with Medicaid? Cheer-me-up phone calls? Be specific. People are usually grateful for a chance to help but are also often helpless about knowing just what to offer.