Caring for the Caregiver

At Sydney Creek, our staff is trained to care for people with Alzheimer’s and dementia. Our family members know their loved ones are in good hands. But whether you are caring for your loved one full-time at home, or visiting them in a community like ours, the following 12 guidelines will be helpful, perhaps even life-changing.

From an article by Esther Heerema, MSW, posted on the website verywellhealth.com    We have edited it for space and specificity to our community.

1. Don’t argue with someone who has dementia

It’s easy to become frustrated, even angry, with someone who has dementia. The tendency, especially with a family member, is to want to convince him he’s wrong and set him straight. Instead, remember that dementia actually changes brain function, structure, and ability. You will rarely win an argument in dementia; rather, you will almost always increase the frustration levels for both of you. Spending time being angry and argumentative is just not worth it.

2. Ignoring the symptoms won’t make them go away.

It’s not uncommon to spend valuable time in the early stages and symptoms of dementia hoping that the symptoms will just go away, or trying to convince yourself that it’s just a phase or that you’re overreacting. This attempt to cope by denial may make things better for you in the short term, but it can delay the diagnosis of other conditions that look like dementia but are treatable, as well as delay diagnosis and treatment of true dementia.

Instead, remember that while it can be anxiety-provoking to schedule that appointment with the doctor, it can also be helpful to know what you’re facing. Even having your worries confirmed by getting a diagnosis of dementia can actually be a good thing, since there are many benefits to early detection, including medications that are often more effective in the early stages.

3. Too many medications can make people feel and act more confused.

While medications are, of course, prescribed to help people, too many drugs can hurt people instead, causing disorientation and memory loss.

Instead, when you go to the doctor, be sure to bring in a list of all of the medications that your loved one is taking and ask if each one is still needed. Include all vitamins and supplements since some of them can affect how medications work, or they can interact with the chemicals in the medications. It’s worth asking for a thorough review of all of the medications to ensure that they’re truly helping, and not hurting, your loved one.

4. Validation therapy can help us respond gently.

People living with dementia often experience a different reality than we do. They may call out repeatedly for their mother or insist that they have to go to work, even though they’ve been retired for many years.

Instead of being irritated and reminding your loved one of her age, the fact that her mother passed away decades ago or that she hasn’t worked in 20 years, try taking five minutes to ask her to tell you about her mother or about her job. These are examples of using validation therapy, and using this technique can often improve the day for both of you.

The ideas behind validation therapy help us to remember to adjust our focus to see things their way, rather than try unsuccessfully to have them see it from our perspective.

5. It’s never too late to work on improving brain health.

Sometimes, people feel that after a love one receives a diagnosis of dementia, it’s too late to do anything about it. Part of that response may be related to the normal grieving process after a diagnosis, but many caregivers have expressed that they really didn’t know that brain health strategies can truly make a difference in functioning, whether cognition is normal or already declining.

Instead, remember that while true dementia won’t go away and generally is progressive, there are still a lot of strategies that can be used to maintain and even improve brain health and functioning for a time.

6. Sharing your struggle and receiving help is important

Millions of family caregivers make every effort to do the task of care giving well, and some end up doing it mostly alone. These caregivers often have no idea how exhausted there are, and if they do, they may feel like their fatigue doesn’t matter anyway because they have a job to do.

Instead of barely hanging on, day after day, seek out home health care services, adult day care facilities, respite care, and support and encouragement groups for caregivers. Communities like ours offer support groups that can help you be a better caregiver by refilling your cup of available energy.

7. Choose one small thing to do for yourself.

The risk of caregiver burnout is real. Caregivers don’t need to feel guilty or frustrated because they don’t have time or energy to exercise, smile, eat right, and get lots of sleep. Most caregivers are well aware these are things they should do but just don’t have the time. The last thing they need is another list of things they should be doing.

Instead, what caregivers need to remember is that doing even one little thing for themselves is important and beneficial. You may not have time to do the big things, but finding little ways to refill your tank of caregiver energy is critically important.

Practical ideas from dementia caregivers who have been there include a 30 minute visit from a friend, 20 minutes of quiet time where you read a religious passage or listen to your favorite music, 10 minutes to drink your favorite flavored coffee, five minutes of locking yourself in your room to physically stretch your body or call a family member who will understand, and 10 seconds of taking a deep, deep breath and let it out slowly.

8. Pick and choose your priorities and let the rest go.

Some people have said that dementia picks and chooses its own battles. However, others have shared that initially, they tried to “do everything right,” but as time went on, they learned that letting go of some of these pressures and expectations saved their own sanity and reduced their frustration.

Instead of focusing on meeting your own expectations or those of the people around you, change your focus to what’s important at the moment. You will rarely go wrong if you ask yourself if the momentary challenge will be important in a month from now, or not, and proceed accordingly.

9. Have the difficult conversations about medical decisions and choices

It can, understandably, be very hard to think about an uncertain future after a dementia diagnosis. You may need some time to absorb and process the information.

However, instead of avoiding the uncomfortable conversation about medical decisions and power of attorney documents, take the time to discuss these important choices. Have that talk with your loved one who has dementia sooner rather than later (or never). Why? Not having to guess about medical decisions and personal preferences can afford you with much more peace of mind, knowing that you are honoring her choices.

10. Remember that he really can’t control his behavior.

When your family member or friend has dementia, it’s tempting to believe that he’s really not that bad off. This can be a protective tendency so that you don’t have to directly face the changes that dementia is making in your loved one’s life.

Sometimes, caregivers would almost prefer to believe that a loved one is being stubborn, rather than the fact that he has dementia. The problem with that belief is that then, it’s very easy to feel that he’s choosing to dig his heels in and just being difficult You may feel like he has “selective memory problems” or that he’s just trying to provoke you or make your day difficult by not getting dressed to go to his doctor’s appointment, for example.

Instead, remind yourself that dementia can affect personality, behavior, decision-making, and judgment. He’s not just being stubborn or manipulative; he also has a disease that can sometimes control his behavior and emotions. This perspective can make it feel a little less personal when the day is not going well.

11. Twenty minutes later can feel like a whole new day.

Sometimes, loved ones with dementia can become anxious, agitated, and combative while you’re helping them with their activities of daily life. For example, perhaps you’re trying to encourage your mother to brush her teeth and she’s pushing you away and yelling at you. It’s just not going to happen right now.

Instead of increasing your demands about brushing her teeth, try giving her (and yourself, if necessary) a few minutes to calm down. Ensure her safety and go to a different room for 20 minutes. You might find out that when you return and turn on her favorite music, the task that she was so adamantly opposed to earlier is now much easier and not a big deal. While this won’t always work, it often does, and it’s definitely worth a try.

12. Quality of life is not impossible in dementia

Coping with a diagnosis of dementia is often not easy. There are losses to grieve, changes to make and many things to learn. However, you don’t need to fall for the lie that life will always be terrible with dementia. This is just not true.

Instead, listen to others who’ve been there, who acknowledge the challenges and don’t deny the pain, but who also strive to continue to enjoy life. According to many people who are living with dementia, there are ways to still enjoy life, to still have a high quality of life, despite their challenges. Take hope from their words when they say that they still enjoy socialization with friends, good food, pet therapy and laughter.