Category: caregiver

Facebook Live Recap: Managing Difficult Caregiver Emotions

On June 12th at noon, we went live with Sarah Harlock, Program Director for the Dent Integrative Center for Memory. We discussed Managing Difficult Caregiver Emotions, a topic that comes up regularly in support groups, classes, and general discussion.

Caring for someone with Alzheimer’s Disease or Dementia poses some special and unique challenges. As a result, caregivers very frequently experience higher levels of anxiety and stress.  Reports have shown that 30% – 40% of family caregivers who are caring for someone with Alzheimer’s or Dementia are experiencing depression. Caregivers can also experience: frustration, fear, guilt and resentment.

 

The diagnosis aftermath

 

When someone receives that diagnosis, there is no question that is is very difficult.  It is hard on the caregivers as well. Everyone’s life changes after that diagnosis. “I want people to recognize that it is not all doom and gloom,” Sarah says, “It can feel very heavy and negative. But, there are moments of joy and really important moments that are going to happen on this care-giving journey.”

 

New relationships, skills, and strengths

 

Through support groups or classes, there are new people you will meet during your journey. You also may form a new form of an existing relationship, such as sibling who are taking care of a loved one together, or partners who were independent, but start to depend on each other after the diagnosis.  New skills will be developed throughout this process. You might be in control of banking for the first time, or have to take over cooking. Strengths will be developed from this.

“When you have the opportunity, if you can step back and just reflect on all the things you have done and learned and all the effort you have put in into care-giving, I hope you are as amazed by yourself as we, as professionals, are when we talk to you. The love and compassion that people put into care-giving is really amazing”, Sarah adds in.

 

The different emotions

 

Since these diseases are things that change over time, it is realistic to think that your emotions will also change over time. Be prepared that down the road, you may have more struggles or you could develop supports to help aid you in care-giving. Emotions are signals, and some of these signals mean that you need to make a change to alleviate difficulties. Two emotions come up frequently for care-giving: guilt and depression. 

 

Guilt

 

Guilt is complex, but there is a purpose for guilt. It brings our behavior in alignment with our moral compass.

Sarah explains this feeling: “Think of an example where you you’ve done something wrong. You’ve wronged somebody or hurt their feelings. Whether you meant to or not, if it caused pain to another person, you feel it. I don’t know about you, but I feel it in the pit of my stomach. I know I have done something that doesn’t fit with who I really am or the person that I should be. So, that feeling in the pit of my stomach is a signal that my behavior was not in alignment with my moral compass, and I need to pull my behavior back in line.” 

What caregivers are often experiencing is “unjust guilt”. You are feeling guilty, but you didn’t cause this pain to this person and you did not wrong them. Sometimes we bring it on ourselves and sometimes, other people expect us to do more. Very often, it is our own expectations of ourselves that fuels that guilt. 

Caregivers can also feel guilt after losing their cool and maybe yell back or snap at the person they are care-giving for. There is never any harm in asking for forgiveness. Again, this is a signal that you need to be taking some steps or making some changes. It is important to be comfortable with the fact that being is “perfect” caregiver may not be attainable.  Your intentions are good but your time, resources and skills are limited. Try to get comfortable with that gap between perfection and reality, and stop beating yourself up for it. 

 

Depression

 

Statistics say that 30% – 40% of care-givers of people with dementia will experience and suffer from depression. It is important that care-givers, or someone who supports a care-giver, monitors the emotional health of a care-giver. 

“I do remember a phone call from a couple. She had just received the diagnosis and she she was devastated by this diagnosis. Her husband was saying ‘I’m literally calling you from our bed. We’re lying in bed, we can’t even get up and start our day.’ And that’s how pervasive this very heavy, heavy depressive feeling was for them”, says Sarah.

There is a significant portion of care-givers that actually qualify as clinically depressed and are suffering from the diagnostic criteria of major depression. This is not just the feeling of being blue, and it passes in a day. We are talking people experiencing pervasive and a consistently low mood.

Depression can come out in a lot of different ways besides sadness. It can come out in a short-temper, lack of focus, or inability to complete tasks. “The first thing that I recommend it that you talk to your primary care doctor. I think that is really important. If you don’t want to take medication, there are other things you can do.”

 

The importance of exercise and diet

 

There is all kinds of evidence out there that talks about the impact of exercise on mood. Start with something enjoyable. It could be a walk up and down your driveway. If you can’t leave your loved one and your loved one can’t join you,  some movement chair exercises are very appropriate and effective. 

Additionally, your diet can play a very large role in how you are feeling.

“If your diet is heavily processed if it is loaded with sugars you know it’s it’s definitely going to have an impact on your mood and your energy levels so where you can you want to make sure that you’re introducing fresh fruits and vegetables and that you are trying to make your diet as healthy as you can, because that also will impact energy levels and mood”, Sarah explains.

 

Finding joy in small moments

 

Finding moments of joy throughout your day can be really tough. It is a thing caregivers struggle with. There are many different things you can do, but a gratitude journal is a great way to start. Find one thing in your day that made you smile and feel good.  It could be a nice sunset, something someone said that made you laugh, a great article you read, a funny video, or drinking a nice cup of coffee while it is still hot.

Once you start looking for those moments, you find them more often. These are not things that will improve your mood overnight, but gradually. 

 

Caregiver counseling

 

Sarah also mentions counseling: ” I would also encourage you to consider counseling. We have people that actually specialize in counseling very specific challenges of caregiving. Those kinds of opportunities exist as well.” Sometimes, it takes that objective person to get our thoughts out of our head and help us organize them. That objective person can help you recognize how you are feeling, what your goals are, and how you want to get there.

Not all techniques work for everyone. It is worth giving them a try. Ignoring any emotions you experience while caregiving will not help, so finding ways to manage them is incredibly important. “There has never been a need for you to be a perfect caregiver – only a caregiver that cares”, Sarah Harlock says.

 View the entire presentation by clicking here.

 

 

 

 

The content of this post is intended for general educational and informational purposes only; it does not constitute medical advice.  Readers should always consult with a licensed healthcare professional for diagnosis and treatment.

 

Making the Most of Your Healthcare Visits – Facebook Live Recap

Preparing for healthcare appointments can seem daunting for both caregivers and patients. There are questions you want to ask and updates you want to give, but you may find that preparing for an appointment is an overwhelming task.

“Sometimes we have patients or family members who don’t necessarily understand the process, and it makes them feel like they don’t get the most out of their healthcare visit,” said Program Director for the DENT Integrative Center for Memory, Sarah Harlock. “However, there are steps that patients, family members and care partners can take to get the most out of appointments.”

Booking and Scheduling

After a dementia diagnosis, it can feel like there are appointments every other week. One day you may have an appointment with your physician, the next week you may need to get additional testing or imaging done. The frequency of appointments and testing can seem overwhelming at first. However, those initial tests are an important part of confirming your diagnosis and creating an appropriate treatment plan.

“Once a treatment plan has been made appointments will become less frequent. Some patients come once every three months, others every six. Depending upon your diagnosis and your needs, you and your physician will create an appointment schedule that works for you,” said Harlock.

Appointment Preparation

Reminders

The way patients diagnosed with memory disorders respond to appointment reminders is very individualized. Some patients enjoy keeping track of their appointments and want to be reminded in advance. Other patients may become very anxious or nervous when reminded. If as a care partner you notice that the person you’re caring for has increased anxiety leading up to an appointment, it’s okay to be sparing with reminders.

Time of day

Caregivers, try to schedule appointments that are at the patient’s best time of day.

“If person the person in your care is generally more confused and agitated in the afternoons, schedule a morning appointment,” said Harlock. “At appointments we will do in-office assessments and we want patients to feel relaxed and able to perform at their best.”

Allot enough time to get ready

“It is important that a patient is fully prepared for their appointment, so try to be mindful of that when scheduling,” said Harlock. “As a caregiver, if you know your loved takes 2 hours to get ready in the morning, maybe an 8 am appointment doesn’t make sense.”

“At each appointment, we want to make sure the patient is in the best frame of mind. Rushing them out the door to the appointment, creating stress is not a good way to achieve that optimal frame of mind,” added Harlock.

Caregivers, it is also important to be mindful of how much help your loved one needs. Is a telephone reminder enough, or has it become necessary to have someone helping them get ready for the appointment?

Preparing for the Healthcare Visit

There are many things you can do as a care partner to make the most of your loved ones healthcare visit.

Make sure the patient has their glasses, hearing aid, etc.,

“One major part of being prepared is making sure the patient has remembered their glasses or hearing aid, or anything vital to their communication. It is very difficult to assess patient if we cannot properly communicate with them,” said Harlock.

Bring an updated list of current medication

Another important piece of being prepared is having a current medication list. This list should include over the counter medicine and supplements. “

This is important, so that we know exactly what the patient is taking,” added Harlock. “The other piece to this is that caregivers are knowledgeable about how well the patient is taking their medication and there are ways to be respectful about this.”

One way you can respectfully check in with your loved one to measure how well they are taking their medicine is to say something along the lines of I’m sure you’re doing this right but just so I can answer the doctor, I need to know you are taking your mediation the way it is prescribed.’

“We have seen many patients whose family member thought they were taking their medication properly, then something happens as a result, and they realize they weren’t.” said Harlock.

Document any changes since last visit

The day before the appointment take a few moments to think about or write down the changes that have happened since the last visit. 

Documenting changes in a patient’s willingness to take shower, ability to handle finances or take medication, is vital information for a provider to be continually updated on.

“Mood is also an important thing to be taking notice of. If there is a big change in mood we would like to know about that,” added Harlock. “Additionally, if there is something you cannot say, or don’t feel comfortable saying in front of the patient, write us a note. Slip the note to the medical assistant or nurse and they will get the questions to the provider who will then make sure it is addressed during the visit.”

At the Appointment

Have your list of questions ready

It is easy to be distracted by rushing to the appointment, or hearing something the provider said. This list will help you focus and on the appointment and get your questions answered.

“Be knowledgeable and honest about what the patient is capable of. If you are the caregiver for a loved on it can be difficult to share, however it is important to be honest and accurate,” added Harlock.  

Take notes during the appointment so you can be mindful of what to keep an eye out for and what to mention in your next appointment.

“It is also helpful for caregivers to ask if there are any red flags to be watching for, especially with medication changes.”

Additional Tips

For caregivers

Caregivers, you are part of the healthcare team! Your insight is vital in maintaining and adjusting treatment plans.

In addition, please do not wait for the next appointment to tell us about a medication side effect, or that the patient is struggling with or has stopped taking a medication,” added Harlock.

For patients

Consider bringing someone to your appointment with you who knows you. Due to the changes that are happening in your brain, even at an early stage, your perspective may not be the same as your families or friend’s. You may not be an accurately communicating or understanding what your treating provider is saying. This is not meant to be an insult, but the reality of the a cognitive impairment diagnosis.

View the entire presentation below!

The content of this post is intended for general educational and informational purposes only; it does not constitute medical advice.  Readers should always consult with a licensed healthcare professional for diagnosis and treatment.