Caregiving: When reality smacks you

marley411,

You are a wonderful human being. You are in no way selfish. This disease is so awful. Being concerned about yourself is not a horrible thing. My husband wants to constantly hug me. He is 87 years old. We have been married for 57 years and I love him very much, but this is exhausting. It's a good thing to be concerned about yourself. I have been told that the stress of Alzheimer's and or dementia can actually hurt the caregiver more than the person with the brain disease. The idea that you have gone through this for 5 years is mind boggling. My husband has only been diagnosed with Alzheimer's with hallucinations for 4 months and I am already tired out.
Do you have anyone who can give you a hand?

I would like to know how you have kept so strong for 5 years. I am in awe.

Respectfully,
Katrina

First, welcome Marley.

Second, bless you for being a loving caregiver for so long!
It is so sweet to hear that your mom is so loving and appreciative. You sound like you have a special relationship.

Any caregiver, especially those for dementia, relates very much to everything you said. It’s very common, and probably even natural to have feelings of guilt. But don’t let them overwhelm you. You are doing everything you can and so much more than many are willing or capable of doing.
Also, don’t be afraid or ashamed to ask for help. Aging and diseases, and dementia is one of the worst, are not something we are built to deal with. And I don’t think anyone can do it alone.

I relate especially to the feelings of the “smack of reality”, the guilt and the realization of the insidiousness of watching a loved one consumed by this disease. I have a large family, but sometimes I feel like I’m the only one who is in touch with the reality of what is happening, and what will happen to my dad (he’s in moderate stage Alzheimer’s).

I wish I had advice or a “magic wand” to take away the negative feelings and symptoms you and your mom are experiencing. Or, at least advice…but I am currently in the same boat. Utterly and completely overwhelmed. angry. exhausted.

Hug to you if it helps

You have said this so beautifully. And sometimes it’s ok to be selfish. This disease puts us caretakers into a position where we become people we never wanted to be. Some days it just takes too much energy to be kind and loving and cheerful person. Be easy on yourself. You’re doing a terrific job. 😊❤️

Sounds like you are burning out. Do you have extra help with caregiving?

Very interesting how different people are affected by this disease. Also how care takers react. I guess I am fortunate that at this point only my memory is shot. Sometimes answer same question 15 an hour. It not the physical strain that bothers me. But every now and then the mental strain is overwhelming. I went to a therapist to learn how to cope better but it was a disaster. Obese women just sat there and yawned after three sessions I said the heck with this. So far my load is a lot less than most I read about for which I am thankful. I yea a 350 mile trip to therapist. Thanks

I’m listening to Travelers to Unimaginable Lands - stories of dementia and caregivers. This was a book recommended somewhere on this site.
I think it is very helpful for understanding both the caregiver and the one receiving the care.

Katrina,
Love and hugs all days sounds nice, right? I never imagined it would be exhausting, like you said.
Thank you for your kind words. My five years have moved from helping with some minor mobility issues and mild cognitive impairment to where we are today (good days/bad days/wacko days). So I’m lucky to have had more good days overall. I get overwhelmed looking at Past and Future, so my current goal is to have Plans A, B, and C mapped out so o can just be Now. (Sounds good, in theory.)

Thank you. Like you, I have a large family. Early on, they were somewhat helpful for short periods of time. But now that she is “just not acting like herself,” they are less helpful. And I get it. She’s not the same person she was ten years ago—even five years ago. (Who is?) as much as I struggle with acceptance, I’m light years ahead of them. They are still looking for that magic wand (and we know that would be lovely, but it just doesn’t exist). Instead of helping by just hanging out with her, they “help” by trying to “fix” her. If only.

It has been immensely helpful to me to find this group. Alone, but maybe not as alone as before.

You nailed it—“we become people we never wanted to be.” Those around me think I struggle because I can’t go away for a week-long vacation. The real struggle is with keeping all sorts of things in perspective. And being that person who loves enough to become a caregiver for our person.

Thank you.

I think you’re correct. I am pretty much on my own in caring for my mother, even though I have a large close-knit family. She gets agitated when I’m not around. So even though my husband and her sisters are good for occasional outings (like when I need to go to the doctor, dentist, etc), it’s almost more trouble than it’s worth. I need to say to them, “Thank you for staying with her for an hour. Please do not feel the need to give me a list of all the ways she has changed. Leave your suggestions and criticisms of me in the trash can.”