A diagnosis of dementia can be devastating not only for the person affected, but for family members of that loved one as well. It may initially seem more comfortable for your family to care for your sister or brother at home. As the disease progresses, the challenges of home care can become much too difficult for the family to shoulder alone. Continuing home care, at this point, may come at a great mental, physical and financial cost to all of the family caregivers.
Making the decision to move your sibling to a memory care community is a very emotional one. Feelings of guilt, anger, and frustration abound as you may struggle to release the burden while finding the care and comfort your sister or brother needs and deserve. It is important to start the conversation with your family about memory care, before the burden has become too much to bear.
Because this can be a very emotional decision, it’s important to stay objective. There are a few signs and stages of dementia where you know that your family is not capable of managing alone.
Evidence that home has now become unsafe
With the progression of dementia, it may become difficult and eventually impossible for the affected person to stay in their current home. Everyday items can become very dangerous for your loved one with a dementia diagnosis. They might misuse household cleaners or become unfamiliar with sharp objects and cut or injure themselves. For these reasons, it may even become too difficult for them to live with you. Simple items like kitchen appliances and stairs become extreme hazards through the progression of the disease, and more supervision will be necessary in order to keep your family member safe and secure.
Signs of aggression
For some people diagnosed with dementia, there may be a stage where they may become aggressive or even violent. The reasons behind this aggression will be different from person to person, but the results can be devastating. With many dementia sufferers, there is a strong occurrence of agitated behavior at “sundown”, or later in the day. Violent outbursts, physical confrontation, and even throwing items are common behaviors that one might see during this time.
In the case of family members caring for a loved one with dementia at home, when your sister or brother becomes agitated, aggressive or violent, they become a significant safety issue for all caregivers. Yes, some people with dementia have reached a level of physical frailty where the violence may not be particularly threatening to caregivers. But, this frailty can become its own issue, as they may lash out, and in doing so, hurt themselves.
Manifestation of additional stress
Caring for a loved one with a dementia diagnosis is very stressful. No matter where the stress is manifesting—in you, in your sibling, in your children or other family members—the results can be life altering. Stress will affect daily routines, sleep schedules, appetites and so much more around your house. The manifestation of stress can also have significantly negative impacts on your loved one with dementia. You need to remember, they don’t know why everyone is so stressed out all the time. They don’t know why you’re crying or yelling or slamming doors. It can become ever more disorienting for them and maintaining that level of stress can negatively impact progress of the disease.
Signs that wandering may be an issue
As dementia progresses, those affected may wander if left unsupervised. There is a greater risk for injuries and falls when wandering behavior becomes a routine. In addition to the risk of injury and falls, the opportunity for a loved one to wander outside and become lost increases significantly. It can be highly problematic, as wandering Senior Citizens don’t appear to be out of place. Unlike a lost child, a lost adult can appear as if they’re going about daily routines, though they’re truly unaware of their surroundings. Because they may already be familiar with catching a bus or driving a car, they may be able to travel significant distances in a very short period of time.
How Do I Handle This Next Step?
It is important to make this next decision as a family–it affects all of you. Think about these things as you prepare to make your sibling comfortable in the later stages of the disease.
- Recognize what stage your sister or brother is in—Educate yourself about the various stages of dementia and the patterns that are displayed. We know it can be difficult for you to identify these phases, so we advise you to stay in close communication with your sibling’s physician. Knowing what to expect in the various stages will help you to prepare for the best transition from home care to a memory care community. It’s important to remember, your experience with your brother or sister is your experience – meeting one person with dementia is meeting one person with dementia.
- Have frequent discussions with your family members—Asking your family members what they can and will be able to handle will allow you to plan and prepare for what you will all be going through. These discussions will hopefully facilitate agreement among family members and provide you with a base of support from which to draw on difficult times.
- Start searching for memory care communities in advance—Don’t wait until your situation has become too much for you to handle before you start searching. Ask for help and support from friends and family who have experience with this kind of care, and don’t be afraid to ask questions. The more information you have and the more comfortable you are with a decision to make the transition, the more likely it will be that you will all benefit from the move to a memory care community.
- Know and acknowledge your limitations—Be honest with yourself and encourage your family to be honest as well. Knowing your limitations will allow you to make decisions faster for both your family and your brother or sister, and allow you all to preserve your health during this difficult time. As soon as you identify that you have physical, mental, or emotional limitations that will make home care difficult or impossible, it is time to start searching for a memory care community suitable for your sibling.
- Surround yourself with support—lean on your friends, parents, family members who have had experience with a diagnosis of dementia. Ask for help when you need it, and accept help when it is offered. Know that you are not alone in this struggle, and that you don’t have to shoulder the physical, mental and emotional burdens by yourself. There is a tremendous opportunity along this difficult journey to find hope, courage, and love within yourself and reflected by others. Acknowledge your journey, accept your reality, and look forward to spending those precious moments together that you have with your sister or brother.