What do Dementia Caregivers Worry About and Why do We Hang Onto Guilt?


What do Dementia Caregivers Worry About and Why do We Hang Onto Guilt?



I've got 89 problems in my head, of which 77 of them are completely made up scenarios that I'm stressing about for no good reason.

Last night, unfortunately, played itself like so many nights before it.  I'm awake! I shouldn't be. My body is telling me it's tired! So, why is my brain so WIDE AWAKE?! Why does my brain and body contrast each other?! I believe the correct term is a "foil", or opposite personalities like Dr. Watson and Sherlock Holmes. Can't these two just get along?!

In short, I worry. And if I am being truthful I worry too much. I should know better, after all, I counsel other dementia and Alzheimer's caregivers the benefits in letting go of unnecessary worries. Taking care and time out for yourself is often the most overlooked part of being an Alzheimer’s or dementia caregiver. I even wrote a prior blog about it, and mention it in the EASY E Alzheimer's Caregiver Checklist (Y= Taking Care of You)

Maybe I stress it so much, because I battle it all the time. I need to practice more of what I preach.

But, at 2 am., I lie awake, and I've got 89 problems in my head, of which 77 of them are completely made up scenarios that I'm stressing about for no good reason.

That's not to say that I don't have valid concerns. I do, but none of which need to be addressed when my body needs its sleep.

What do I worry about?

A lot! I worry about what most of us do: health, finances, family. Besides being an mother, wife,  entrepreneur, Alzheimer's advocate, volunteer, speaker and presenter, I am still a family caregiver. I help care for my father who is currently battling brain cancer again.

Dad fightin cancer

For those who have been following, I do have a sad update, that the "C" word has returned. He also suffers from mild cognitive impairment, related to frontal lobe dementia from the previous cancers and surgeries.

My father's treatment regimen now includes radiation 5 days a week, weekly doctor consults, and chemotherapy every 3 weeks. That's just the medical aspect. Of course there is a lot more that goes into caregiving for a person living with two major illnesses (such as cancer and dementia).

I think a lot about my Dad, and how to best provide for his care and quality of life. I think a lot about making sure his wishes, including end of life issues, are honored. I stress because he has not put these wishes into writing, and am struggling with him understanding the importance of this. I worry about his finances, does he have enough to continue care? I worry how the cancer may spread and affect his independence further. And, of course, since I will always be his daughter, I always think "am I doing enough for Dad?!"


I have a lot of valid concerns that can lead to anxiety. The problem is I choose to make these experiences feel negative.

That sounds harsh doesn't it?! Am I being hard on myself? Yes! Am I being honest? Yes!

The point is it's my feelings, my choice. I choose to be happy, or choose to be miserable. In every situation, our reaction is a choice.

What do caregivers worry about?

I was able to read a bit from a good book titled, "Coping with caregiver worries (The caregiver survival series)' by Ph.D. James R. Sherman (available from Amazon) that talks about the sources of fright, anxiety, guiltiness, and depression, amongst caregivers and tells why they exist. It also shares advice on alleviating and managing these destructive forces.

I'd like to share the list compiled of what caregivers worry about, what makes us lose sleep.

  1. I worry about running out of money.
  2. I worry about losing my care receiver.
  3. I worry about making a critical caregiving mistake.
  4. I worry about the effect caregiving is having on my life.
  5. I worry about criticism from siblings or other family members.
  6. I worry about being able to provide the care my care receiver really needs.
Excerpted from Coping with Caregiver Worries by James R. Sherman, Ph..D., Pathway Book, 1998, p. 1.
Where do you fall on the list? Do you worry about a few, or can you say yes to all?!
quotes for the caregiver

Unaddressed anxiety often leads to more health issues!

It's time we all start addressing these anxieties and what needs to be done! Why?! Because unaddressed anxiety often leads to worse physical and psychological health , not just in you but in who you care for!

For me, when I experience stress and I handle it in  a worry way, my blood sugars spike. I am diabetic, and that's never good. The other day, from my lack of sleep and stress, my waking blood sugars were 250! Yes 250! Normally, my numbers are 110 (well managed diabetic blood glucose readings should be around 90)

Psychologically, I don't fare any better. Besides being tired in the head, I've know gained a new emotional enemy, guilt! You would think that with all that I do, I would feel pretty good, like I'm pitching in and helping. But the exact opposite happens. I feel like I am not doing enough, and guilt sweeps over me.

My problems now seem overwhelming, so I feel like I have to control all of them.

It doesn't matter if I have accomplished 8 out of 10 tasks to do, as a caregiver, the fact that I missed 2 will eat me alive with guilt and insecurities.

The impact of worry on relationships

Now, left unchecked all of these worries, guilt and anxieties have reeked havoc on my body, mind, and now will spread to my family, to my relationships.

I can become moody, short-fused, withdrawn, uncommunicative, and full of self doubt. All of which, make it difficult for anybody, let alone family, to deal and help with. Often times, caregivers can find themselves "burning bridges", so to speak, in allowing the people closest to us to help.

Psychology Today has a great article, "Are Your Caregiving Worries Harming Your Relationships?" that really helps shed light on what I'm touching on.

Why do caregivers fail so often at asking and accepting help?

Personally, I found that it was my duty to be the caregiver. I've always been a nurturer. Also, I am prideful in asking for help. A lot of my family members look to me for healthcare decisions. I get told often "Ask her, she's the nurse."

Many caregivers are proud of the fact that they can handle all the responsibility of caring for a loved one. If you’ve never had to ask for help in the past, the thought of asking for help now might make you feel like you’re failing.

Another good read on this topic, comes from LivHome "Why Some Caregivers Refuse to Ask for Help… When They Really Need it" LivHome often has great blog topics, especially for caregivers and the senior and aging population, and is worth subscribing to.

The good news is, all is not lost! There is light at the end of the tunnel.

There are things that I can do (and are doing! Ya!), and I hope you can too, to help change the way my body and mind perceive stress. The list is long, and you can learn more by visiting Aging Care's article "Anxiety Busters: 5 Ways to Overcome Your Anxiety", but I want to mention 3 that have worked great for me.

1. Physical Activity

Exercise! Even if it means getting out for a walk. Make a date with a friend to get to the gym. Your body needs to release stress. It needs endorphins for pleasurable and comfort feelings. I am embracing exercise, and I can feel it in my body already.

Sign up for group exercise classes! Besides the physical benefits, it can be rewarding socially. How about dance classes? Yes, that counts as exercise too.

Besides, there is mounting evidence that exercise, even in moderate amounts, can help ward off Alzheimer's and Parkinson's disease. (Click to see study results..Link 1, Link 2)

The point is, don't cave in to easy excuses to not be physically active. Your body, mind and soul will thank you for persevering!

2. Relaxation Techniques

Practice deep breathing; it can instantly lower the physical symptoms and mental worry associated with anxiety. In my EASY E Caregiver Series, I mention a technique called the Four Square or Box Breath technique. It works!


1. Breath in slowly through your nose for a count of 4.square breathing

2. Hold your breath for a count of 4.

3. Breath out through your mouth for a count of 4.

4. Hold for a count of 4.


   Image Source: Autism e-Learning Site

3. Accept Uncertainty

This is my favorite bit of advice regarding worry, anxiety and guilt. It's why I lay awake. I wrestle with control, or what I feel like I need to control.

It's the fear of the unknown. I feel that I  need to know with 100% certainty what's going to happen. The problem is, no one can predict the future or control of the outcome of every situation. Thinking about all the things that could go wrong doesn't make life any more predictable for me, and it won't keep bad things from happening.

It will only keep me from enjoying life. It robs me of sleep. It takes away from my mind, body, and spirit.

My hope for you

I hope that by being honest about my struggles as a dementia caregiver, that it will encourage you to take steps that you may need to overcome worry, anxiety and guilt in your life.

In case, no one has ever told you, or you don't hear it enough,

You are amazing! You have taken a role that many cannot do! You've stepped up! You are a hero!



Last modified on Thursday, 11 December 2014 21:49

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