Coping with Dementia from a Caregiver’s Perspective

Dealing with dementia as a caregiver can be a very draining process – emotionally, physically and even financially. It might start off as a situation you feel confident handling, and quickly devolve into one that’s overwhelming.

This is a journey that affects an entire family, but for the primary caregiver, it’s often a huge burden that can feel as if it’s breaking you down. You may feel exhausted, hopeless and frustrated on a regular basis.

Even if you have a spouse who is supportive and somewhat involved, it can still be defeating for many caregivers to be in this situation. There are many obstacles you’re going to encounter, and you have to know how to cope with these issues.

Many people focus on the patient, but the caregiver is the one who needs the most support and resilience when faced with the toll this health tragedy takes on their entire family.

We need to address the coping mechanisms you have at your disposal when you’re dealing with behavior changes from a loved one, an emotional rollercoaster with you, a lack of self care and resources and tough decisions that have to be made.

Dealing with the Changing Behaviors of Your Loved One

One of the toughest challenges you have as a caregiver is simply the enormous changes in the personality and behaviors of your loved one. The changes aren’t by choice, and you know that – but it doesn’t make it any less difficult to handle.

There’s not only a loss of memories, but a cognitive decline and level of confusion that makes them unable to function as they once did, if at all. And their emotional reactions, ranging from aggression to childlike fear can a lot of deal with.

You can cope better by learning how to communicate effectively with someone who has dementia. Some people, for example, always try to “set the person straight” and argue with them, trying to correct them about something they’re claiming.

Instead of arguing with your loved one or forcing them to think a different way, it’s often best to simply play along with them, redirect them and diffuse the situation completely. You may need to know how to understand their non-verbal communication, too.

You’ll want to reassure your loved one – especially when they’re feeling paranoid or acting threatening. Try to usher them into a calm environment or space and redirect their attention so that they’re being stimulated by another activity like coloring, doing a puzzle, listening to their favorite music and other things that minimize their agitated state.

Some of the most challenging behaviors you may have to deal with including things like wandering. Dementia patients will often feel a pressing need to go elsewhere, like home or just out for a drive.

They may search for their keys, which you’ll need to hide or do away with, and make sure your home is locked in a way that they can’t leave unexpectedly. Dementia patients might get up in the middle of the night to cook and accidentally start a fire, or somehow harm themselves, so you need to have safety locks, lighting that comes on when someone is moving in an area, and lock things up can cause issues when you’re not around.

That may even include food! For example, if your loved one has dementia and diabetes, they might get into the pantry or eat an entire gallon of ice cream while you’re asleep, putting their health at risk.

Sundowning might be something you have to deal with. This is when the agitation and restlessness increases around sundown, something common in dementia patients. A routine can help, as can strong lighting that keeps them awake until bedtime.

You want them more active during daytime hours so that they’re emotionally and physically tired by bedtime. If they don’t have proper stimulation, that restlessness will increase as the hours get later.

You might be tempted to let them nap so that you can get a break but this will backfire on you when you’re trying to go to bed and now have to deal with their restlessness and sundowning issues.

You also have to watch their sugar and caffeine or other nutritional issues that can affect moods. Don’t forget to also check medicines, because some of those will cause sleeplessness, too.

By addressing all of these issues for the loved one, you should get some relief for yourself because their needs are being met in the best way possible, resulting in fewer negative encounters.

Caregivers of Dementia Patients Are Often Riddled with Emotional Guilt

One thing you’ll have to cope with as a caregiver of a dementia patient is your own emotional roller coaster. It’s normal for you to feel a mixture of sadness, anger, and frustration.

But this is going to result in you feeling an immense amount of guilt for the negative feelings you have regarding your loved one. You know, logically, that this is not their fault.

But sometimes, you may blame them irrationally or lash out at them because you are exhausted and not thinking clearly. Some of your guilt may stem from wondering if you are doing things correctly, or if you have the resources to take care of them properly.

If you make a mistake as a caregiver, you have to forgive yourself and move forward in the right direction. Acknowledge that you are doing your best with a very hard situation, and show yourself some grace and compassion.

Besides forgiving yourself, make sure you get the support you need for your emotional state. There are video counselors now that can meet with you on your smart phone or computer without you having to leave home to get therapy.

Take time to journal at the end of your day. You want to acknowledge what you went through, but also find some joy in little moments where your loved one may have been more lucid or where you felt at peace.

Remind yourself of why you do this – the love you have for your family member, the fact that you hope someone would do the same for you in your dementia state, and so on. If you need to, write some positive affirmations you can repeat daily to get through those rough moments.

Self-Care Is Vital to Your Caregiver Journey

Perhaps the best coping mechanism is for you to routinely engage in self-care when you are the sole or primary caregiver to someone with dementia. You may notice that friends and family disappear, when you thought they would be more helpful.

You may feel isolated, even if you are married or in a relationship and expected your significant other to step up and assist you. Self-care should be a priority, but it’s often the lowest priority for many caregivers who put all of their energy and attention on the one who is suffering with dementia.

Try to maintain relationships outside of the home with friends. You can use caregiver services that come in and take over for you while you simply go to lunch or to a spa day with them.

You’re going to experience burnout, and you don’t want to engage in self-care once you hit that roadblock. Do it regularly, before you reach that point. Even if there’s some activity you love doing, like going to the gym, going to an art class or playing golf, do it from time to time.

Don’t forget to take care of your physical health, too. Don’t only take the dementia patient to the doctor – you need to go, too! Whenever you plan meals, plan to make nutritious ones for yourself as well.

If you can’t take time to leave and meet with friends, find some online and join groups and forums where you can interact with people who have similar interests as you do. Social support comes in many different forms.

Remind yourself that you are more than just a caregiver. You need to have a life of your own. Be mindful throughout your day and check in on yourself as if you were your biggest protector – because you are.

One thing many caregivers forget to do is ask for help when you need it. Sometimes, people won’t realize you’re overwhelmed and they’re more than willing to step up and assist you if you need a break, but you may have to ask.

Finding Resources That Provide You with Freedom and Support

There are many different ways you can get the support you need as a caregiver. Others can support you with planning, with tips and knowledge and even in taking over duties for you when needed.

There are online resources like groups and forums where you can communicate with others in the same situation. They might be able to help you in understanding better ways of doing things regarding caregiving.

Or you may find blogs or social media channels and profiles that provide good information for you to consume to help you become a better caregiver or to take care of yourself as a caregiver.

Respite and home health care services can give you a temporary reprieve from your caregiving duties if you need a day off, or even to take a short vacation and just get away to recharge your batteries.

You might even have a home health aid come in and take over some of the caregiving duties for you on a daily or weekly basis. This might be cleaning, bathing, medical or other caregiving responsibilities.

If your loved one is capable of attending, you might see if there are any adult daycare services near you. They often have these for dementia patients, allowing you to drop them off and pick them up after a day out having fun or running errands.

If you’re struggling financially as a caregiver, look for resources that help people who are in this role. There may be non-profit organizations, community and government programs that can offer assistance.

Keep in mind that some help doesn’t come in the form of finances or people. Sometimes, technology can be a blessing for caregivers. For example, you might find a monitor or air tag device that helps you keep track of your loved one if they tend to wander.

Knowing When to Make Tough Decisions

It may be tough, but there will be some people reading those who have to make a decision in the future about whether or not they are capable of continuing their journey as a caregiver for someone with dementia.

This is a very rough road for many people to handle, and in some cases, professional help is not just a convenience, but a necessity. This is an emotional task because it involves someone that you love and hoped you could care for on your own.

You want to be honest with yourself about whether or not you have done everything to the best of your ability. If there is anything you can change, such as engaging in more self-care and leveraging resources that are at your disposal, you can try that as a last resort.

But if your health, and the health of the dementia patient are both deteriorating to the point where neither of you have a good quality of life, it may be time to seek a different solution, such as considering a memory care facility to handle the majority of the caretaking for you from this point on.

This is not just about whether or not it’s ethical or hard for you to put your loved one in the hands of someone else. You have to remove the emotional aspect from it and look at it from the viewpoint of everyone’s safety and overall well-being.

You might find that in-home help is an option, if that makes you feel better. But for some, this won’t be enough. You have to navigate the feelings of guilt and recognize the fact that your loved one would want the best for you if they could communicate it.

Ask for guidance from professionals when making your decision. This not only includes the dementia patient’s healthcare advisors, but yours, too. Your doctor might warn you about high blood pressure, fatigue and other concerns like depression that influence your decision.

Being a caregiver for someone with dementia is a noble and loving task. You are stepping up to give back to someone who has shown you love or cared for you in the past.

While you go through this journey, make sure you’re also taking care of yourself.

You are a priority in this world and deserve happiness,  peace and enjoyment each and every day.