Preserving Dignity and other Caregiver Tips

Since my last post Cindy improved a little bit. I can “walk” her again, rather than carry her everywhere in the house, though even more awkwardly and she becomes apprehensive when I do either. I have noticed that heat, whether from external climate or internal fever, impacts Cindy more than anything else. In hindsight, I realize she suffered from both for those few days when I needed to carry her. Recent events prompt me to share a few important caregiver lessons I have learned, starting with the threat of overheating, while there is still time.

After a few mishaps, I now err on the side of Cindy being cool. This contradicts our normal instincts to seek comfort for our loved ones. If someone looks cold we should warm them. Yet with dementia some things are not what they appear.

There were times when I put a blanket around Cindy before a companion visits, then find one or two more blankets around her after they leave. Indeed, I have taken Cindy out on 80+ degree days and concerned folks would wonder if she is too cold. The trouble is that “fetal” cues are similar to “chill” cues. Cindy’s typical sitting pose draws her arms close to her chest, as would happen with either being cold or being withdrawn; either could be the case with dementia.

I suspect the problem of overheating originates from an immune system constantly in battle against pathogens related to dementia. Erring on the side of comfort for Cindy has, on a number of occasions, driven up her body temperature further. Sometimes I would get Cindy up for a hug and feel like I was wrapping my arms around a furnace. Perhaps she was comfortable in regards to her body temperature, but these are the times when she is most in a fog.

Caregiver tip: Use common sense rather than body posture when balancing comfort and health.

Keeping Cindy too warm is not the most common mistake visitors make; that would be asking me how Cindy feels in her presence. There may come a time when Cindy does not know when people are referring to her in the third person; perhaps that time already is here. Yet why ever risk the indignity of the “third person” treatment.

Caregiver tip: Use the second person plural to ask about a caregiver’s patient. Example: “How are you guys feeling.” The caregiver will know your intent.

Speaking of dignity, I constantly seek ways to boost Cindy’s. I make a big deal over any simple thing she does. If our bathroom schedule works out well for a day I praise her. Sometimes I’ll even do a cheer: “Hooray for Cindy! Hooray for Cindy! Someone in the crowd is shouting Hooray for Cindy.” I praise her hugs. I praise her smile. I praise her when our “walking” goes well.

Conversely, I make myself the focus when anything goes wrong. I claim things like “I should have brought you to the bathroom sooner,” or “my bad” if she stumbles a little while I’m supporting her weight. When she occasionally mutters “no,” I seldom have a clue what she is talking about but I automatically respond: “OK, we’ll stop.”

Caregiver tip: Make dignity a high priority in preserving a patient’s will to live by heaping encouragement and deflecting.

The death certificate for Alzheimer’s victims usually cite things like “starvation,” or “infections” rather than dementia for the cause of death. We all have to pass away some time from some cause, but causes like these concern me. I can prevent infections from bed sores by our “walking” and “dancing” throughout the day. The “walking” poses a challenge, particularly when going up or down stairs, but the “dancing” provides additional rewards. I know that some things I do by virtue of being stronger, other caregivers might have to come up with different solutions, yet where there is a will there is a way.

Caregiver tip: Have a will to interrupt the sedentary existence of your patient.

The most active part of Cindy’s day is when we go out in the pedicab or the wheelchair. Cindy tends to be more alert outdoors and never agitated. Getting a sedentary person outdoors may once again call for finding the will and a way, not everyone owns or can pedal a pedicab, but the benefits to the spirit are undeniable.

Caregiver tip: Find ways to get your patient outdoors.

Aggravating the problem of infections for some Alzheimer’s patients are unsanitary conditions from fecal and urinary incontinence. I bring Cindy to the bathroom several times a day. We don’t always get the timing down correctly, but the consequences from accidents are not present for long.

Caregiver tip: Come up with a proactive bathroom schedule, rather than a reactive one.

I cannot guarantee that I will prevent starvation as a cause of death. The “starvation” of Alzheimer’s patients often results from simply forgetting how to swallow, something we have avoided so far. We must be doing something right given the advanced state of physical decline in other ways. We eat healthy; we eat together; we alternate bites.

On the other hand, I suspect there is a 50/50 chance that Cindy will do what my Mom did, decide to stop eating at some point. When Mom did that we sent her to the hospital. From there she went to a nursing home, where she stayed and grew increasingly morose. That will not happen with Cindy. If she refuses to eat I will respect that and do what I can to make for a comfortable passing at home. Until then, we will continue to enjoy healthy meals together.

Caregiver tip: Make meal times both as healthy and communal as possible.

No doubt there are many other caregiver tips that are too internalized for me to identify and share. Feel free to ask caregiver questions; addressing caregiver concerns is an important objective of this blog.