5.7 million people in the United States live with Alzheimer’s, the most common form of dementia. The vast majority of them are over the age of 65. However, there are some 200,000 who are under the age of 65.
That’s approximately 1 in 3 seniors struggling with dementia or another form of memory loss.
Dementia doesn’t just begin out of nowhere, and as your parent ages, it can become overwhelming and frustrating.
In this article, we’ll discuss some of the warning signs that one of your parents may have dementia and how to live with them as the disease progresses.
It can be frustrating and challenging living with parents with dementia, but you’re not alone.
Read on for some of our best tips, including knowing when to let go and begin looking for a facility for them to live in.
What is Dementia?
Dementia itself is not a disease, even though many people are described as having dementia. Instead, it is a collection of symptoms that many people have all at once. It is typically characterized by a loss of memory, the ability to care for oneself and the inability to do the same things the person used to.
Many people with dementia have Alzheimer’s or vascular dementia.
Vascular dementia occurs when the blood vessels that lead to the brain experience damage, thereby affecting the way the brain continues to work. As one would imagine, this results in memory loss and cognitive impairment. This specific type of dementia affects 20 in 100 people with dementia.
Vascular dementia can occur after strokes or other traumas or incidents.
Alzheimer’s is the most common form of dementia, and the one most people recognize and think of when they think of dementia.
Researchers have found that Alzheimer’s is a result of the build-up of specific proteins in the brain, which affect memory and cognitive function.
All forms of dementia are, at the moment, progressive. That means that once a person is diagnosed, they will not get better, but will get worse as time goes on.
What does this mean?
Those with dementia may, as time goes on, have trouble remembering people close to them. They may not remember what year it is or think they’re in living in the past.
For instance, they may believe that their children are still little. Or, if they lived through some trauma like a war, they may think that the war is still happening or that they’re in danger again.
People with dementia may also have hallucinations and believe things have happened that didn’t. They may explain to you in earnest all about a walk they took around the countryside that afternoon when you know it didn’t happen.
Or, they may have scary hallucinations that involve flashbacks to traumatic events or are similar to nightmares.
Dementia looks different for everyone, but it is universally difficult to both care for a parent with dementia and see them deteriorate.
In the next few sections, we’ll talk about tips and tricks for managing care for someone with dementia.
Recognizing the Early Signs of Parents with Dementia
If you don’t live with your parent, the signs of dementia may seem to come on all at once. This is especially the case if you’ve gone a while between visits. But if you do live with them, the signs and symptoms may seem very subtle and to creep in slowly.
Make sure your parent sees his or her doctor regularly and that they keep them updated on any changes, including mental health and dementia-related symptoms.
Some early signs of dementia may include feeling increasingly depressed, withdrawal, apathy and loss of interest in activities they once enjoyed, loss of memory (especially with recent events), confusion, inability to concentrate and being unable to complete routine tasks.
Parents with Dementia: Preparing for Reversing Roles
No matter what happens in your parents’ old age, there is a point when all of us have to reverse roles and parent our parents. No matter if they have dementia or not, everyone who is lucky enough to have their parents live into old age will have to care for their parent and make tough decisions for them.
Finding one of your parents with dementia can make these decisions and their importance even more pronounced. You may need to suddenly worry about your parent’s safety, their well-being, and personal hygiene.
If your parent is diagnosed with dementia or you notice them going downhill, you should speak to them about some of the difficult choices you may have to make for them in the future. Some people may already plan this out if they’re incredibly pragmatic, but not everyone will.
While your parent is still him or herself, have several serious and frank conversations about what they want you to do for them as they progressively get worse.
Do they want to go to a specific home in the event you cannot care for them? Do they want to hire a home aid? Do they want to move closer to their children?
All of these things should be discussed plainly and openly. As your parent’s dementia worsens, he or she will be unable to make these decisions for themselves. While you’ll likely make the best decision possible for them, knowing what they want makes both of you feel more secure in the future.
Make Financial Plans
You can also make financial plans for what your parent would like to happen before your parent is unable to do so. This way, you can decide amongst yourself, your parent and siblings who will pay for any care necessary.
This will eliminate guesswork and should hopefully mitigate financial hardship.
Do not ignore that your parent is ill or has dementia. This will only lead to complications, confusion, and family fights.
If someone in your family is in denial about your parent’s dementia, it might be a good idea to enlist the help of a counselor.
Many facilities also offer family education that can help.
Make Preparations for End of Life
While no one likes to think about it, everyone is going to die. According to AARP, 60% of Americans do not have a will or proper plans for the end of their lives.
You need to discuss these matters, however unpleasant, with your parent before they decline in health. For a will to be valid, and honestly what they want, you need for them to dictate it or draw it up while they’re still themselves.
At this time, you may also want to discuss things like caskets, funeral arrangements and anything else your parent might wish to have. This way, you can be sure that when the time comes, even if they are no longer themselves, they’ll have exactly what they wanted.
Communication with a Parent with Dementia
Communication may become more and more difficult and frustrating as time goes on and your parent’s condition worsens. However, there are a few things you can do to make it less frustrating for both of you.
When speaking to your parent, include them, even if someone like a home aid or carer is there. Don’t talk about them as if they’re not there.
While they may not be the person you remember growing up, they are still a person who should be included in their care plan and treated with dignity.
Include your parent when discussing their daily routine and things that have to do with them.
Above all, you should be as patient as possible. This can be difficult, especially when you spend long days caring for them or they begin to repeat themselves. It can be natural to feel exhausted or exasperated by them asking you the same thing over and over or repeating the same request.
Try to remain calm and reassuring, and let them know that you’re here for them.
Raising your voice or becoming frustrated can cause them to feel less secure and even anxious. Instead, you should smile and let them know you’re there for them, no matter what happens.
Even if things progress to the point that your parent no longer recognizes you, speaking to them, sharing about your day and your children will still make your parent smile.
Just having you there can increase their sense of safety and security.
Treat them with Dignity
You will most likely not forget this, as you’ll only want the best care for your parents. But it bears repeating that you should always speak to them like an adult, and ensure that they have all of their needs met. Do not treat them like a child when talking to them or helping them with hygiene.
Likewise, do not allow them to be in a situation where they would be embarrassed if they fully knew what was happening. For instance, don’t let someone walk in on them changing or bathing, and think it doesn’t mean anything because of their dementia.
Respect them, their privacy and their dignity.
Set a Schedule
If you’re caring for your parent in your own home, set a schedule and stick to it each day. You may even want to write this out for them so that they know what to expect at each time of day.
Stick to the schedule so that they know what to expect and when.
Write Down How-Tos of Daily Tasks
As dementia advances, many individuals may have trouble doing simple things like making a cup of tea or putting the clothes in the washer. However, this doesn’t mean that they should refrain from doing them.
Instead, write out instructions for them to allow them to maintain their independence for as long as possible. Leave instructions near each appliance to help them remember what to do when.
Intervene with Things Become Dangerous
In a reversed role situation, you’ll likely need to intervene at some point. Whether your parent is living with you or on their own, it will probably become dangerous to allow them to continue to cook or clean on their own. If and when this becomes the case, set up alternatives for them.
This can mean hiring someone to cook food for them, having a meal delivery service, or hiring someone to do the cleaning for them. Allow them to maintain their independence, while still being safe, as long as possible.
Discuss Long-Term Care
If you’re at your wit’s end caring for a parent in their home or your home, it is likely time to consider having them move into a memory care facility. This may be necessary to keep them safe and to allow you to continue to live your own life.
While your parent may make you feel guilty for making this decision, rest assured that often, it is for the best. Knowing when to let go and let someone else bear the burden for the majority of the time is an act of love for your parent.
Part of having to reverse roles is knowing when to decide that it is time to move into a facility.
Moving Your Parent Into a Memory Care Facility
Your parents with dementia may be very reticent to the idea of moving. The change can be scary, especially around people they don’t know when they’re already confused.
However, memory care and palliative care facilities are already fully equipped to deal with individuals in your parents’ position. They can provide care and resources that you just can’t at home.
If you’re interested in learning more information about when it is time for a nursing home, bookmark our news and updates section for caregivers and seniors.