We caregivers are counseled to put ourselves into the minds of our loved ones. It is so hard, but I have been trying to do this, because if I don't, I find myself being constantly irritated and my tone of voice is angry. I was told to respond to the constant repetition of questions throughout the day with an attitude of "please pass the salt." That has worked for me until recently, but I can feel that my "tone" has become increasingly frustrated and even angry. I can still remember when my husband was a bright, funny, capable man who I could always rely on and talk to about anything; who, although it did not come easily, could apologize when he was wrong, and whose affection always brightened my day. All of that no longer exists. But I know that his soul is still there and because of that I must keep telling myself how it must be crying out to be heard and I cry with him and for him. Yesterday I could tell he was more tired than usual and cranky too -we'd had a big day the day before as we celebrated out of town with family a birthday. He had not been around that many people in a long time and though he did well while we were there, I think it was exhausting both mentally and physically. And so I promise here that I will keep trying to be a better caregiver and to somehow help this man feel loved.
Having some respite can help your attitude. My husband bowled with a senior league. A neighbor picked him up and returned him. That one morning a week to myself was very helpful in extending my patience! Arrange some breaks for yourself!
My husband was very aware that he had dementia. We called it Lewy, since it was Lewy Body Dementia. It was helpful to be able to say, "Oh honey, I'm sorry I was so crabby with you before dinner. I wasn't really mad at you. I was mad at Lewy! I love you very much and just wish Lewy would leave us alone."
It isn't fair that the bright, funny, capable man you married is no longer there for you! Of course it is not his fault. But you'd have to be superhuman not to resent it sometimes!
Another thing that helped me a lot was belonging to a support group of other caregivers.
She, come here and vent, if it helps. Many of us have been in your shoes.
Saturday was a long day for you. And for him. He was overstimulated and over tired. That happens with me when I try to get hubby out of bed, into his wheelchair and into the car. I have a lift but it’s not electric and he’s over 300 lbs. Last time his power chair would not go back up the ramp. I had to push him and the 400 lb. chair UP the ramp. He was borderline hysterical and so was I. I was bruised and sore. And boy, was I cranky on Monday.
You are doing the best you can. You care for your husband, keep him fed, clean and safe and as happy and content as possible. This is a nasty, horrible and unforgiving disease for all involved. We all wonder what we ever did to deserve it.
Make sure you take “me time” when you can. Right now, after a really tough day that started at 5:30AM, Hubby is asleep and I am on my iPad. This is my me-time.
Come back often for hugs and support. ❤️
I know its really hard. Even the most patient person can feel worn down. I hope a trusted friend or family member can give you some respite.
I tried to be as empathetic as I can be most days, but sometimes the pressure and daily routine does take its toll.
We all know you are doing everything you can.
Sending you hugs.
Give yourself more grace, you are longing to be heard as well. HUGS & STRENGTH 2U!
**Hugs!***
You don't need to question yourself. The fact that you are trying to be pleasant, patient and not cranky shows that you love him and wish to do more for him. But all of us are human. We have good days and bad days. We all get tired from time to time. No need to be hard on yourself. Try to get some respite and recharge yourself.
Haven't settled into any kind of a routine, post h/a. He just sleeps and sleeps. 100% against what his cardio doc wants. If I say ANYTHING about ANYTHING he shuts me down with a sarcastic, mean comment. I inquired if he'd attempted any of the list of things that the drs have ordered and his response is the same "I'm just so very, very sick, you don't KNOW what this feels like". True, I don't, but his dr saw him on Tues and was shocked the guy hadn't gone back to work, even PT.
We've been on the merry go round for 12 year. He's only 66. I am so tired. YES, he can still work FT and that's right where he should be.
Thank GOD for my therapist. And this board. I am sitting right on the fence of "stay with him" and "leave and have a life". It's awful, to feel this way, every day, every second. He never, ever thanks me. He never says he loves me. He just lays in bed and groans.
I can't give him more love, I don't HAVE any more to give him. Plus which, he does not care.
That is the most insightful, poignant thing I have ever read on any of these pages. Yes, I believe that the real husband you know and love is aware and suffering along with you on how things have come to be. My hope (and belief) is that souls can see levels above us concerning what life is really all about, and the depth and understanding of your love.
I WISH THAT ALL THOSE CARING FOR THEIR LOVED ONES HAD YOUR UNDERSTANDING AND LOVE.