Midwest Mary

Identifying the severity of Alzheimer’s disease in even close friends and family members can be difficult. We need to spend solid 24/7 time with them. Short visits are quick snapshots of our loved one. It rarely offers a true perspective. The main caregiver, particularly if it is a spouse or life partner, is the one person who understands the needs of their other half.

The following is an excerpt from The Alzheimer’s Spouse. Finding the Grace to Keep the Promise that describes some of the responsibilities caregiving spouses face.

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Our responsibilities to a spouse with Alzheimer’s never end. As the disease progresses, so does the required level of care. We must monitor our spouses’ feelings and needs. They may not know if they are hot, cold, hungry, or tired. If they are agitated and unable to tell us why, we have to figure it out. We are detectives, always striving to find the underlying cause of their discomfort. Did they miss a meal? Is there a draft? Is some article of clothing binding? Are they in pain?

We are our spouses’ memory. As their past becomes increasingly jumbled, we help them sort it out. Like an external hard drive, we keep tabs on important data such as past health issues, friend and family connections, appointments they must keep…

Their critical decisions about things like healthcare and finances become our responsibility. We are their money manager, nurse, advocate, housekeeper, and personal assistant. This is all in addition to tending to our own needs, other family members, holding down a job, and managing our household.

Through it all, we listen to endless repetition, the same question or statement spoken over and over again. If our spouses repeatedly express their displeasure with something we have done, it feels as if we are continuously being attacked. Until we learn to turn that off, it can be grating. Even with that discipline, it is wearing on the more difficult days.

Responsibilities also become increasingly more physically demanding. There is a lot of lifting, and they may need assistance with walking, bathing, dressing, and toileting. And everything in their trail needs to be constantly cleaned as they are messy eaters and bathroom users.

Doctor visits and tests fill our schedule. Medications must be monitored and changes in health have to be addressed. This is one obligation that can’t be pushed off.

Gatekeeper is another title we’ve added to our repertoire as we must guard them and their activities. This is a position we don’t want to be in any more than they want us to be in it. They are adults, not children or prisoners, and often chafe at the ongoing erosion of personal power. But we protect them for their own good. Their actions are so irrational.

As gatekeepers, one of the many things we monitor is their careless spending. The concept of money and its value has little meaning to them. We become quite unpopular with outsiders when we stop payment on our spouse’s most generous checks.

Their continuous safety is a priority that isn’t easily achieved. Keeping a grown man or woman from wandering out the door takes tremendous gentle persuasion. Spouses may be setting out on what in their mind is an important mission, but it is freezing outside, they are in their pajamas, and they will have no idea where they are once they step beyond the front door. Knowing how to redirect their attention, perhaps saying we need their help inside, is an invaluable tool in our growing repertoire of such devices.

They come to feel secure only in our presence and become our shadow. Panic strikes them if we step out of sight. They are constantly underfoot as we move through the house. We are an inseparable couple at this point.

What We Can Do…

• Don’t let outsiders’ critical comments get you down. It is not just that they don’t understand; they cannot understand.
• Try to enjoy your spouse’s constant presence. It will be gone someday.
• Ask your spouse to assist you in taking over little jobs. They still need to feel valued.

*Photo and Post©2024, Mary K. Doyle