August 20, 2019: Dementia and Dying – Caregiver Burnout

August 20, 2019 Caregiver Burnout

Everyone who is actively involved in the care of an older relative or friend has probably experienced some level of burnout. Whether you are caring for your aging or declining parent at home, or handling their financial and medical needs while they are living in a senior care facility, the responsibilities and continuous required daily actions can be overwhelming.  

Many people I have spoken to about their experiences with caregiving have expressed feelings of guilt at not being able to provide more complete care, or fear that their lack of medical training made might actually cause damage. For example, I wanted to provide care for my mother-in-law but have no background in nursing; when it came time to give her a catheter, I was completely out of my comfort zone. I felt like I had failed because I wasn’t able to do that for her.

What I have discovered is that, while there are things better left to the professionals, there are many things that I can do for her that are meaningful; for example, I am very good at connecting with her. She smiles when I show up because I do my best to let her know that I love her in many small ways. We often look at photographs, listen to music, play with stuffed animals (she loves birds), sing, or just sit together holding hands. I do the things that I actually can do for her, and I try to be aware of my boundaries or when it gets to be too much.

One thing that has been present in almost all of my conversations with caregivers is the experience of burnout – of the inability of caregivers to care for themselves while caring for another, or their inability to balance their families, work, and caregiving responsibilities.

Some caregivers hide the stress they are experiencing because they feel they “should” be able to provide care for a loved one without struggling to find balance in their lives. Burnout is a real problem for caregivers and it is important that caregivers care for themselves first so that they can continue to provide care for their loved ones – just like the stewards/stewardesses advise when they instruct adults to put their own oxygen masks on before putting one on any children they accompany; if the caregiver gets sick, they can’t take care of the other person.

Ways To Deal With Burnout:

  1. GIVE YOURSELF CREDIT FOR THE THINGS YOU DO.

When family members have dementia they may not express any gratitude for what is done for them; in fact, they may be unaware of most of what goes on around them, which includes the care being provided. Also, when you are the primary caregiver, other family members may or may not support your efforts, or may just leave it all to you because you have stepped up to handle the situation, leaving them free to ignore what needs to be done, or to sit on the sidelines and criticize. You may be the only person who is fully aware of all of the big and little things you have to do to make sure your family member receives proper care. Make sure you give yourself credit for all of the things you do to care for your loved one!

2. GO EASY ON YOURSELF

It’s probable that you will make mistakes – how you deal with those mistakes will make a big difference in how well you can continue to provide care. Some people beat themselves up over mistakes to the point where they become paralyzed and fearful of making any more decisions. If you are doing your best to provide care for a loved one, then trust that you are doing more good than harm.

I’ve personally known people who deliberately abused or took unfair advantage of those in their care. I’ve known people who have ripped off their siblings as soon as they got the all-powerful Power of Attorney. I’ve also known people who felt they didn’t deserve any payment for all of their hard work, almost as if their internal voice was saying “if you were a good son or daughter, you would take care of me because you owe it to me.” Caregiving is stressful and you need to be kind to yourself while you go through the process. 

When I was the executor of my father’s estate, I found myself refusing a fee as executor and paying for lots of little things because I never wanted to look back and feel badly about any of my decisions; as a result, I never felt like I owed my siblings anything beyond the final settlement doled out by the attorney I hired to oversee the process. I’m sure I made mistakes, but I also was transparent in my decisions and made sure that (to the best of my ability) my decisions reflected my parents’ wishes. Whatever mistakes I did make, I took responsibility for,  learned from, and finally left behind.

3. GET SUPPORT.

Caring for someone with dementia can be particularly hard on caregivers because dementia patients are often unable to express their wishes – leaving the caregiver in a position of having to make important decisions without guidance from the person the decisions will directly affect.

Often caregivers feel isolated and stressed out because no one else may be fully aware of all of the difficult financial and medical decisions that need to be made, and the daily actions that have to be taken in order for insurance payments to be made, doctor’s appointments to be kept, medical supplies to be purchased, prescriptions to be picked up and administered, and so on. Medical supervision is complicated and caregivers can burn out because of the amount of daily actions they may be required to take.

I’ve heard the complaint many times that a caregiver doesn’t have any time for him or herself. This stress can be hard on the caregiver emotionally and physically. Getting support definitely helps! Support can be from a group of people going through a similar experience who share their stories and offer each other comfort and advice, or from a therapist who may delve into unresolved issues the caregiver with the person for whom they are providing care.

While I was able to resolve many of the issues I had with my father before he died, my mother died before I was able to resolve my issues with her and I was left with a lingering sense of frustration, anger, and sadness. Therapy helps!

4. REGULARLY DO THINGS THAT BRING YOU JOY

My partner loves to climb mountains; it brings him tremendous joy. I love being outside and active, theatre, and being creative – I even love writing – once I’ve finished something and had a chance to polish and publish. Meditating may also be really helpful if you are feeling stressed. Doing the things we love gives us the energy to do the things we have to do that are stressful.

Resources:

You can find a good description of the signs that you might be burning out as a caregiver on the Alzheimer’s Association website. The Alzheimer’s Association also offers tips worth taking a look at on how to manage stress and where to find support resources.

I’m a big fan of meditation and Michael Sealey has a lot of wonderful meditations on YouTube that I highly recommend for helping to relieve stress. My favorites: Natural Healing Sleep, Let Go of Negative Attachments, and Meditation for Mornings.