Top 8 Truths of Dementia Caregiving

42 Comments

Most of us find, as we travel our unique journeys, that certain phrases or concepts take on the status of truth in our world view. Our personal truths may not be identical to those of others, but we know what is true for us.

Below, I've shared, as food for thought, a few of my own truths that have developed during my personal caregiving journey.

My Personal Truths to Caring for Someone with Dementia

  1. What type of dementia does your loved one have? Alzheimer's is the most well known type of dementia, but there are many others. Vascular dementia, Lewy body dementia (LBD), Frontotemporal dementia (FTD), Parkinson's disease with dementia and mixed dementia are some of the most prevalent. For this reason, it's important that the physician who tends to your loved one knows the different signs of dementia, and is qualified to treat his or her specific case. Educating yourself about the type of dementia that your care receiver is coping with will help you understand his or her behavior and allow you to provide more compassionate care, as well.
  2. Be as flexible as possible. People with dementia often change not only day to day, but moment to moment. If your loved one is having a bad day it's most likely not your fault. Do what you can to help while hoping that tomorrow will be better. Watch for patterns, but know that some days will be better than others. Caregivers may have to shift a shopping day to another time because their loved one is having a particularly bad day. Try not to let these small disruptions become larger than they really are.
  3. Accept that others will offer advice. People with no understanding of what caregiving entails will be more than happy to tell you how you should handle your caregiving life. Since they haven't been in your shoes, they can only guess at what they think they'd do under similar circumstances and in their minds, they are right. Take a deep breath and smile while they have their say. Then do what you feel is right for you and your care receiver. If you feel you need advice, find someone with similar caregiving experience and ask for their perspective.
  4. Detachment is vital for our mental health. We need to detach from our care receiver enough to keep our own sense of self and not allow their needs to define our whole lives. If we have a controlling, cranky elder we cannot please, we can't let their behavior saturate our sense of self to the point that we feel we are failures.
  5. Empathy is necessary for compassion. No, this is not a contradiction of my point above, nor is empathy the same as sympathy. While we must detach from our care receiver to remain a separate being and have perspective in our lives—and we likely feel sympathy for their pain, their confusion and their loss of dignity—empathy is what makes us a compassionate caregiver. When we empathize with someone, we put ourselves in their place. We consider how we would act if we were in a similar situation. What would we want someone to do for us so that we could feel better?
  6. Self-care is not a luxury. If we neglect our own health, we will pay a price. There are certain routine medical tests caregivers need. If a middle-aged woman doesn't have a recommended bone density scan, she could find that she has developed osteoporosis the hard way - by breaking a bone as she shifts her care receiver to a new position. Take care of your own needs; for your personal benefit as well as for the benefit of your care receiver.
  7. Don't judge your caregiving skills by the response of your care receiver. People with dementia are going to have bad days. If you are educating yourself on how to cope with negative behavior, and asking for help when you need it, you are likely doing fine. Try to remember a good day when your care receiver seemed to find some enjoyment and see if you can replicate that to some degree.
  8. Know your limits and ask for help. Nearly everyone who is trying to care for a person with dementia is eventually going to need some help and it's vital to keep in mind that caregiving needs to be a team effort. Whether help comes from respite care provided by friends or family, hired in-home caregivers, adult day care, assisted living or a nursing home, dementia caregivers need assistance. Without at least occasional breaks, neither the caregiver nor the care receiver is likely to have the best quality of life that can be realistically expected.

Many of your truths may be different, my friends. But I believe that a number of them will be similar to mine. It's what we caregivers share – that fellowship of having given of ourselves to help our vulnerable loved ones and others.

Carol Bradley Bursack

Follow this author

Over the span of two decades, author, columnist, consultant and speaker Carol Bradley Bursack cared for a neighbor and six elderly family members. Her experiences inspired her to pen, "Minding Our Elders: Caregivers Share Their Personal Stories," a portable support group book for caregivers.

Visit Minding Our Elders

View full profile

You May Also Like

Free AgingCare Guides

Get the latest care advice and articles delivered to your inbox!

42 Comments

I agree with all this, but getting help and taking care of ourselves isn't always that easy, or possible. In my own situation, I'm an only child, responsible for my mom for about 12 years now... I don't have family, except my son's. My oldest son has helped the past 2-3 years, but even two people are hard pressed to care for an alzheimers patient around the clock. I know, you know, that care givers need more help...but the way I see it, the government doesn't know...or care. They have free labor that saves them billions...last article I read says we save them not 35 billion a year as I first thought, but more like 75 billion a year. Where is some of that money for more help for us? The REAL kind of help we need....time off? I got as much help as I was able under insurance, and that was all I could get. It's not nearly enough. It should be against the law for any one person to be expected to take care of an alz/dementia patient, on their own, around the clock, 7 days a week, 365 days a year. It's ridiculous. You're damn right it needs to be a team effort...so where is my team? Nobody here but me... You can ask...BEG...for help, Carol...damn sure doesn't mean you're going to get any, sad to say...
i like carols explanation of and emphysis on empathy. you have to put yourself in the elders shoes in order to figure out their needs.
my thumbs up goes to lildeb who pointed out the importance of helping only when help is needed or requested. this leaves the elder in control and feeling usefull . i took aunt edna to the grocery today and just had a ball utilizing the little things ive learned from moms care. i just push the wheelchair. edna makes every choice from locking the door to pushing the elevator buttons, to whether she wants a sandwich on the way home. it is crucial to me that she has control and dignity and there is no stress or no hurry. i left mom in control of every decision in her life too and she loved me for doing so.
well except for the one night we hauled her to the hospital in the rubber truck. lol, but she quickly forgave me..
I like the article and especially part on, #2“Being flexible as possible.” It is hard sometime while trying to do hundreds of things as a caregiver. However, their r times where I have to stop n slow down n observe my mil which now has moderate Alzheimer. We were never told what kind, just Alzheimer’s. She has her days where how can I say a bit sluggish with her cognitive functions n movements. Not a lot of times but u can see them when it happens. I just pull back a few n observe, n reflect n emphasize n go with her at her own pace n help when she will ‘allow’ me to help her. I know it has to be hard on the person that has the illness as much as it is on a 24/7 caregiver. However, during my first year of caregiving, I was doing n making it easy for my mil when she was capable of doing things for herself. I had to stop on some stuff for she was becoming too independent on me n becoming helpless. Besides that she was treating me like I was her own personal servant! Debbie can do that for me or I will wait till Debbie does it. I guess too much empathy played the role in that situation but not now. I help when I can tell she needs the help. Besides, it helps her feel a bit more independent n self-worthy.
The #8 “Know your limits...” If you are lucky and can find a place for an adult day center for a few hours that won’t cost n arm- n-leg, it does make a huge difference for both. However, it seems if the person with the illness is in the severe state of their illness that, the cost of getting help seems to multiply. Not to mention sometimes they don’t won’t outside help. Sometimes u have to just get cleaver n find out ways that will work. (The lady nurse aide is here to help give u a bath n she is getting the training she needs for her job while u allow her to help you). This would work most of the time.
The #7 been through it more than once. I think a lot of people just want to offer suggestions to help even though they have no clue until they walk these shoes. However, I don’t think its intentionally in a bad way from them. However, their r some that have no clue n make assumption that we have no job n just sat around all day just because we r not bringing in the $! More public education n education others if possible is much needed in order to understand what its like having a 24/7 caregiving job. I do believe that education is one part of the key to being a good caregiver but u also have to learn as u go for everyone’s situation are different n so are personalities on both end. Overall, this was a pretty good article for the basic caregivers.