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 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.

I too am feeling this way. And those who had been left around me couldn't understand why I was falling apart. I was screaming for help but none came. There wasn't even a person to call who understood. It gets old hearing, "What's ya gonna do?" or "Life isn't fair." or my personal favorite, "Enjoy the time you have left with him because it's going to go fast!" I didn't need anything other than some emotional support - just needed a shoulder and to know I had someone to call when I was falling apart. No one applied for the job of being an actual friend so I have few left in my life at all.

I also have extreme electromagnetic hypersensitivity that is making all of this so much more complicated. A lovely list of effects of this sensitivity include depression, anxiety and irritability. That's coupled with heart palpitations and chest pain. I can't go out to support groups. I can't run errands safely. I can't even shop without fear of falling over with a heart attack with all of the new technology that was deployed over the last few years. So I'm beyond isolated. It's tough enough making friends when you're older but it's impossible with the baggage I'm dragging with me.

I'm looking at where I am in life and realizing I have zero hope for a future that makes any sense. I'm angry, irritable, depressed, sick and always fatigued beyond measure. My DH is probably stage 5. Some days I've said late stage 5 and I wasn't wrong. Other days… I don't even know. I've had a huge reprieve these last several days which has been an amazing but unexpected gift! You'd almost not know he even had a problem. I don't know if this is normal. I never thought I'd see my DH again but he's here today and I'm grateful. He's all I have. Literally.

When he gets to the point where I can't safely handle him, I'm not sure what I'm going to do. We do not have the resources for care without selling our home. But our home is the only place I can find space where I can survive without symptoms. I have a perfectly nice home that's uninhabitable by me and now my husband is feeling the same effects which include dizziness and fatigue. So he's spending time with me in the old motorhome with limited power that I put in the back of our horse pasture. It seems to be helping his memory and cognitive function to be out of the frequencies.

There is a Dr Martin Pall who is professor emeritus at Washington State University. He believes the new frequencies are going to give us all dementia. He isn't likely wrong. If you can do anything to prolong your LO's mental faculties, removing RF exposure (especially at night) could make a ton of difference. I believe it has for my husband. His younger sister was diagnosed 3 years ago with EO (just like my husband) and given a 4 year prognosis. She did the experimental medications and didn't want to listen about the frequencies. She's about to go into a home. She's far worse than my husband whose memory issues started probably 10 years ago or more. Food for thought.