Becoming the caregiver for a parent or spouse with dementia resulting from diseases such as Parkinson’s or Alzheimer’s can be overwhelming, almost as overwhelming as the diagnosis itself.
It is very difficult to watch your loved one progress through the disease. It is also overwhelming. The demands that are placed on your time will make you feel stressed, lonely, angry, and sad – and guilty for even having those feelings. Often, you feel like when you’re doing everything you can it’s still not enough,.
“Let go of your expectations of other people,” said Catherine Hammond. “What they do or don’t do, how they should act or feel: they won’t be able to understand exactly what you are going through, even if they have been a caregiver before. Most importantly: let go of your expectations of yourself. You can only do so much. You are human, and human beings have limits.”
Catherine is the founder of the Hammond Law Group, which practices only estate planning and elder law. Catherine established her practice after her difficult experience caregiving for her mother at a very young age.
“When I was still a teenager my mother was diagnosed with early-onset Alzheimer’s disease. I moved her into a nursing home when she was 57. I was 22. Things were pretty difficult in my journey with my mom. She had no documents stating who her caregiver should be or what her medical wishes were. The lack of planning meant I had to get permission from a judge to be appointed as conservator and guardian so I could just make basic decisions and sell her home.
“There were some disagreements with my brothers, and it tore my family apart. All of that unnecessary suffering made me want to go to law school so I could help people minimize some of the distress.”
If you are caring for someone you love who is dealing with a diagnosis of dementia, be sure to take care of yourself, too. Watch our caregiver series to learn more.
Catherine oversaw her mother’s care for more than twenty years and understands the very personal trials that accompany caregiving.
“This is going to be messy,” said Catherine. “It’s helpful to recognize the stories you carry in your mind about the right and wrong ways to do things. Remember that everyone feels guilt. Recognize where you feel guilty for not doing more, for not doing the ‘right thing,’ and even for resenting your loved one. Be gentle with yourself, practice lavish forgiveness of yourself, which will help you let it go.”
Allow Others to Help
Another aspect of caregiving that can be extremely difficult is realizing that you don’t have to do everything yourself. There are a variety of resources that are available to you, including in-home care and skilled nursing facilities ,– if you will let yourself use them.
“It’s difficult to conceive of placing your spouse or parent in the care of others when you believe that you are the only one capable of providing them with the care they need,” said Kent Mathews. Kent has spent 25 years as a hospice and geriatric social worker where he helps families manage the emotional and practical issues surrounding disability and dying.
“I call it the super-caregiver syndrome. It’s the belief that you are the only one who truly knows what is needed. This type of thinking is often reflected in comments like, ‘I know the staff are good and well meaning, but I just know the staff won’t be as attentive to mom and dad like I am at home with them.’ And you know what? You’re right. The paid staff won’t care for mom and dad like you do. They can’t, because they don’t have the same emotional attachments and commitments that you do. But that doesn’t mean it won’t benefit your care receiver to receive the care from another person, and giving yourself a break is vital for everyone.”
“We must have different relationships throughout our life in order to thrive. Your care receiver also needs different relationships if they are to thrive as they live with their dementia.”
You Are Not Alone
There are times when, as a caregiver, you can be surrounded by people – your care receiver, well-wishers, relatives – and still feel completely alone, like no one understands what you are going through.
While it’s true that your caregiving experience is uniquely yours, there are people and resources that have undergone similar experiences. They can help ease your suffering, just as you are easing the suffering of your loved one.
“You should also talk to people who can help you understand what is going on with your loved one,” said Kent. “Your care receiver’s doctor should be able to provide you with information about the physical progression that will occur, especially if you have the right legal documents in place. And look for dementia support groups in your area. Your local Alzheimer’s chapter or your local Area on Aging are good places to start for getting this information.
“Support groups are a great resource to help you understand the emotional and behavioral issues your care receiver and you will face.”
Catherine and Kent examine the issues caregivers face in greater detail in The Caregiver Course, an online, comprehensive resource for individuals who find themselves caring for someone with dementia or Alzheimer’s disease.