Let's face it. When you're the primary caregiver for an Alzheimer's patient, no one else in the family will ever truly understand what you're going through. Nor is it likely they'll understand just how demented the loved one is unless they spend a lot of time with that person - and they usually don't.
Having a loved one with Alzheimer's disease can create a tremendous amount of stress in families, although sometimes the diagnosis brings family members closer as they work toward the common goal of caring for the patient.
In families where there is generally good will, conflicts can typically be worked through for the common good. Advice given by the Mayo Clinic includes strategies such as sharing responsibilities among family members, meeting regularly to discuss care issues, being honest in discussions, not being critical of each other, and, if needed, joining a support group for Alzheimer's caregivers or even seeking family counseling.
However, in families where people didn't get along well before the diagnosis, it can create nightmares, especially for the primary caregiver. The situation can be even worse when the primary caregiver is not a direct family member, such as, for example, when the patient has remarried and the caregiving spouse is not a blood relative of the children.
The situation can become worse still if some of the family members live out of town and only see the loved one for short, infrequent visits. They just don't have the opportunity to witness the severity and frequency of demented behaviors you have to deal with every day.
You may find you're being criticized unfairly for the care you're providing even though you're doing a heroic job and making major sacrifices in your personal life to do so. This can lead to bitterness and create extreme disharmony in the family.
It can be endlessly frustrating to have others make caregiving suggestions that are unreasonable because they're based on a complete lack of understanding of the patient's condition and abilities.
For example if a parent living alone is no longer able to do laundry, a child might recommend using a laundry service. What the child might not know, however, is that the parent wouldn't even be capable of opening the door and giving the laundry to the service person when they arrive for the pickup.
Another example is that a well-meaning sibling might advocate for placing a parent in an assisted living facility when the parent couldn't even find his or her way to the dining room and back. Siblings who haven't been around their parent very often might not be aware of that basic fact.
Although you can probably never convey the full extent of the patient's impairment or the burden the caretaking is placing on you, there are some things you can do to try to reduce friction within the family:
- Be Patient and Understand Where They're Coming from: Try to put yourself in the other person's shoes and understand why they lack knowledge of the situation. If you can stay calm you'll have a better chance of decreasing stressful interactions.
- Educate Others about the Patient's Condition: It can help if you make very detailed lists of the patient's dementia behaviors and share them with other family members. Remember, they've never seen the patient do many things you see on a daily or even hourly basis, so put down even the smallest details. Update these lists frequently and share them with everyone on a regular basis.
- Have Other Family Members Care for the Patient for Awhile: The best way to let other family members get a better understanding of the loved one's condition is to have them take care of the patient for a while. Ideally, this would be for a week or two while you go on vacation, not just for an afternoon while you're at a movie or go shopping. Almost anyone can deal with a demented patient for a few hours. Let them take care of the person for a couple of weeks and you may find you're being criticized less and appreciated more.
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