They often refer to caring for someone with dementia as “the long, sad goodbye.” The reason being is that you are slowly losing pieces of your loved one as the disease progresses. It can be a very challenging experience and one that can take a lot out of you the caregivers. Here are a few tips to help you manage your grief while saying goodbye.
During the late-stage of Alzheimer’s disease, the caregiver’s primary responsibility is preserving the quality of life. Here are some tips for not only taking care of your loved one’s basic needs but also for reconnecting through the different senses.
The Sense of Self is not Lost
When the late-stage of Alzheimer’s comes, some caregivers may think that their loved one is completely lost. Studies have shown that that is not true at all. Your loved one may not be able to communicate verbally, but there are other ways to reach out. Sensory activities can be powerful ways to help your loved ones express themselves through alternate means. You could listen to a favorite song or rub on a lotion with their favorite scent. Though they may not be able to say what they’re thinking about, the smile on their face or tap in their foot tells all.
Think about a Move to an Assisted Living Center
Once your loved one reaches the point where he/she needs assistance with the most basic tasks, it may be time to consider looking for a full-time care facility. Moving your loved one to an assisted living center doesn’t mean you’re giving up or passing on the responsibility to someone else; caregiving is an exhausting job and takes its toll mentally and physically. As the disease starts to spread, it becomes harder to juggle personal life and caregiving. Senior living facilities can help alleviate some of that stress while also providing a safe environment for the individual.
Research should begin in advance so that you’re well prepared to make a move in case an emergency occurs. When touring the facility, keep in mind what would and wouldn’t work for your loved one. No living center is perfect, but there may be factors that can make or break your decision to choose that residence. If possible, have family and friends alongside you to help decision process go more smoothly. It’s easier to make choices when multiple eyes are looking at the situation.
This far into the disease, it’s imperative to keep an eye on your loved one’s health. Without your help, he/she will most likely forget when to bathe, brush teeth, etc. Because people with dementia are not able to communicate pain or discomfort, infections start to become more common. Monitor general health and be on the lookout for common side effects alluding to other illnesses. Symptoms can include:
- Irritation or aggression
- Sudden Bowel or bladder changes
- Distressed sounds such as moaning
- Visual signs such as bruising, uneven skin tones, swelling, or pained facial expressions
If you are unsure whether it’s severe enough to call a doctor, err on the side of caution and call anyway. Describe your loved one’s symptoms, and the doctor can decide whether further medical examination is needed.
One of the most important tasks in caregiving is monitoring eating. The person with dementia may forget how to eat or lose their appetite entirely. If that occurs, it’s essential to encourage eating as much as possible. If the sense of taste starts to decline, adding sugar in meals may encourage more eating. Since feelings of thirst also diminish, consider serving high water content foods such as watermelon, peaches, and sherbet to help prevent dehydration.
If your loved one has trouble with swallowing, choose soft foods that can be digested easily. Another option to consider is food thickeners. As one grows older, the muscles in the esophagus tend to lose tone, potentially causing swallowing problems. It’s especially more prevalent in people with dementia, who may forget basic eating habits altogether. Food thickeners help liquids go down the throat slowly, so it’s easier to prevent aspiration (or food entering the windpipe). You can buy food thickeners at any major store or can substitute with unflavored gelatin if you want to include more natural ingredients.
This post was written in collaboration with AFC’s social work team.