As our loved ones start to age, a special kind of fear surrounding Alzheimer’s and dementia grows. And while there are neurologists to help with diagnosing and medicating, it can be challenging to know how best to help as an Alzheimer’s caregiver, or if you're providing a loved one with any type of regular Alzheimer's care.
Increasing irritability and confusion can make anyone afraid of making a wrong move. And while there’s no one right way to deal with Alzheimer’s, there are steps you can take to ensure your loved one has the best care and support possible.
1. Remember You Can’t Do This Alone
Undoubtedly, caring for and supporting someone with Alzheimer’s is one of the hardest things you can do. As of right now, there’s no cure and all you can do is treat symptoms and keep people as comfortable and safe as possible.
That being said, one person can’t do it all on their own. This is where family, friends, and professional caregivers come in. Your life doesn’t stop when someone gets diagnosed, and dealing with not only your responsibilities but their feelings as well can be challenging at times.
If you're an Alzheimer's caregiver for a family member, consider taking shifts or switching days of the week with others so that the person has the oversight they need to be safe, but no one person is taking on the entire load. This can help you balance your life and ensure your loved one is cared for.
2. Do Research and Understand the Disease
Knowledge is power, and the more you understand about the disease, the better equipped you are to handle the upcoming challenges and provide help and care for your loved one. If you were getting your wisdom teeth out or suddenly showed signs of an autoimmune condition, you’d want to know everything you could about it.
Demystify the disease, and it can help diminish fear and equip you to help your loved one. This isn’t a condition you want to go in blind for, but thankfully there are free Alzheimer's resources you can take advantage of:
3. Keep a Record of Their Behavior & Symptoms
Keeping a record of a person’s behavior, lapses in memory, and mood and motor skill changes are really important when someone has a degenerative disease like Alzheimer’s. If you think someone might be experiencing early signs of Alzheimer’s or dementia, then this record can be an important snapshot for neurologists to better assess their situation.
If they’ve already been diagnosed, then having a record can give doctors important insight into how they’re doing in their everyday life. They might recommend new medication or new doses, changes in occupational therapy, or suggest memory care facilities if needed.
Since Alzheimer’s eats away at things like memory and motor function, people can’t always recall their struggles and symptoms to the doctors on their own, so caregivers and others in their circle are a big help for getting them the care they need.
4. Bring People With You to the Doctors’ Appointments
Alzheimer’s is a destructive disease in more ways than one. All throughout the stages, you and your family members or close friends might have differing opinions about how well they’re doing or how much independence they can handle.
At the end of the day, unless you’re a medical professional, you’re not equipped to have those conversations. So, one way you can help is to make sure everyone who’s interested in caring for and supporting your loved attends as many doctors’ appointments as possible.
Let the doctors lay out the reality of what’s happening and the care your loved one is likely to need going forward. Emotions run high with a disease like this, and the empirical evidence can be helpful in getting everyone on the same page. This can also help make daily care easier because everyone understands what the person needs.
5. Follow-Up on Their Daily Medications
Once someone with Alzheimer’s is prescribed medication, they’ll need to have someone keep track of their daily meds and check that they’re being taken. Remember, the person with Alzheimer’s might fight back about micromanaging, but often these medications have to be taken at the same time every day and the nature of the disease is that — at some point — they won’t remember to take it on their own.
So, clearly labeling every single medication and when to take them is one way to help more independent folks be in charge of their pills. Also, setting alarms or calling them as a reminder can bypass that lapse in memory. However, if they’re further along in the disease, they might need you to come over and give them their pills or have a professional caregiver dole them out.
6. Establish a Consistent Routine
Kids, adults, and people diagnosed with Alzheimer’s all love a routine. Routines can be super helpful in mitigating confusion and aggression. If your loved one knows what to expect throughout the day, their more limited memory capacity is able to feel comfortable and not on edge. As their memory starts to fade and confusion sets in, having a routine can stave off some of that fear.
And building a routine is important for caregivers, too! It lets you get all the stuff you need done in your life while helping support theirs as well.
7. Take Advantage of Their Good Days
With Alzheimer’s, there are going to be good days and there are going to be bad days. It’s all too easy to get hung up on the bad days, when they’re irascible and maybe don’t remember who you are. Instead of focusing on the struggles, take advantage of the good days!
If they’re still able to stay at home, then be really present in your time with them. It’s difficult to accept, but these memories are the ones that’ll be freshest in your mind when they’re gone. So, give yourself a ton of good memories to take with you.
8. Know the Signs for When Outside Care Is Needed
If you're a family caregiver or assisting with a loved one's care, you have to prepare yourself in the beginning that — at some point — your loved one is probably going to need professional care. There are very very few people who can afford private in-home 24/7 memory-specific care. But knowing that a memory care facility might be in the future doesn’t mean that your loved ones won’t be able to live by themselves and with family or friends for a period of time.
As you work in tandem with their doctors, you’ll need to be the eyes and ears that notice the behaviors that mean outside care is needed. Some examples of these behaviors to look for include:
- They’re becoming increasingly volatile and violent.
- They’re struggling to swallow or breathe.
- They’re falling down a lot and don’t have good mobility.
9. Place Them in Memory Care Facilities at the Right Time
Nursing homes have their own stigma, but memory care facilities are much different. Most people with Alzheimer’s — if they live long enough to reach the severe stage — will need to be professionally cared for. Unfortunately, memory care facilities are costly and so a lot of people wait to get their loved ones admitted. And of course, there’s the emotional element of feeling like you’re abandoning your loved one.
But, once you’ve gotten the recommendation by their doctor that it’s time for professional care, get them in as early as possible. The longer they have to transition to the new environment with a clear mind, the higher likelihood they’ll have of being emotionally stable for a longer period.
One NC woman spoke on her experience caring for her mother with dementia, “getting her there while she still had most of her faculties helped her be able to make friends and socialize, which is something I know she wouldn’t have been able to do if we waited a lot longer.”
No one wants to wake up in a bed they don’t recognize, so giving them time to get familiar with their surroundings can be the kindest thing you can do.
10. Don’t Take Their Emotional Volatility Personally
Alzheimer’s comes with mood changes that are unavoidable. People can become irritable, irascible, and react to their lessening memory in violent ways. You have to remember not to take these outbursts as an attack against you as a person.
And if there’s another person there to care for them and you’re feeling overwhelmed, take a break and take care of yourself. You’re not doing them any good by pushing through your own emotional reaction. But when you hit those emotional moments, try to remind yourself that this is the disease speaking and not your loved one.
11. Consider Talking to a Therapist to Help You Process
Just like with a divorce, Alzheimer’s doesn’t only affect the person that’s been diagnosed. In fact, it can tear through a whole family network. This is where taking care of your own mental health comes in. For most people, dealing with loved ones going through Alzheimer’s is a first, so you don’t have any tools or coping mechanisms in place to help you.
Consider talking with a therapist if you don’t already have one to learn ways to cope with the grief, frustration, anger, and exhaustion that can come with taking care of someone that has Alzheimer’s. If you’re healthy and well, you’ll have a bigger bandwidth to offer to your loved one.
The More You Know, The Easier It’ll Be
No two cases of Alzheimer’s are the same and there’s no rulebook for how you’re supposed to handle it. But the more information you know about how the disease works, how other people have managed their loved ones' experiences, and how to cope, the better prepared you’ll be to make your loved one's next few years (or even decades) on Earth happy and content.