Who am I?

Losing yourself when you’re a caregiver is common feeling. You are grieving what you’ve lost and what will never be. It helped me to stop thinking of my DH as my spouse and companion and to think of him as my patient and me his nurse. It took the emotion out of it. It wasn’t easy to do but with self talk I did. You may want to make.an appointment with a counselor to talk about your feelings. You are angry at the disease, not your DH. Can you get respite help? Even a few hours each week help. Some days I would just go to a coffee shop or bookstore with a coffee shop and sit in peace and quiet. Some MC facilities have support groups open to the public. You can also call the Alzheimer’s toll free number on the top of the main page. They may know of resources in your area. So sorry you are feeling this way. Hugs. 💜

I’m where you are more often than not. I also think I’ve got it figured out, then comes a gut punch. My DH drains me with his constant yelling out, “mother”, “mom”. Sometimes I say what? And he answers, not you! It’s so exhausting because he has great lungs and can really shout it out. I feel bad when I hope he gets laryngitis for a little bit. This dementia thing is way stronger than I am. I’m starting to realize I’m in a near constant state of fight or flight. Need to get a handle on how I’m handling this. Maybe it will help to think of a patient/nurse relationship.

I too am on this long journey caring for a man who has become mostly a stranger. I have lost myself and sadly a lot of our friends as well. Guess it is no fun to be around a crazy person (him not me 😉)

I was finally able to get him into a once a week Adult Day Respite program for 4 hours starting 2 weeks ago. We were on a waiting list for 8 months. The facility also runs a support group. Something I was never able to participate with since I am with him 24/7. He gets extremely anxious when I leave even though I only leave him with relatives (eg his brother, our daughter). While I have only attended one support group session I did come away with a tip that has been helpful. Each day, morning or night write down one thing that brought you joy for the day. It may be as simple as he laughed at a joke I made. I have a refrigerator magnet that says “Every day may not be a good day but there is good in every day”. If you look for the bad things you will certainly find plenty of those but try to look for the good things. It has helped me and I hope can help one of you.

I all this does change us and I will never be who I was, and I like who I was. I look at other people different (more understanding of some, but also less supportive or caring for the family that abandoned my wife when she needed their support). I gave up a business that I started and liked doing to stay home and provide care. I lost almost all of our socializing (friends and family have slipped away). A year later she had a stoke and that push the move to MC. I can never go back to being who I was, but there are options to be who I want, I just haven't figured out who that is and if I want to put the effort in. I still feel bunt out and used up.

I can relate to this.

Just reading your comment and the replies helped me to understand (again) the I’m not alone in this painful, exhausting journey. My DW is still home with me full time, but I’m moving toward support on several fronts — day care, home respite visits, support group for me. My wife’s agitation has increased, especially at night. No sleep for either of us 3 of the last 6 nights. Oddly (and wonderfully) the in between days have been some of the best in the last year! Thanks for your honesty and courage.