Hello @dianajane I am sorry to read of the healthcare challenges you are facing with your husband's situation. It is always a challenge to be a caregiver, but especially when our patient has mental challenges from dementia and related diseases. I am Scott and I was my wife's caregiver during her battle with brain cancer, during which she had multiple dementia-like symptoms. I also was one of the caregivers for my mother in law who had dementia.

We have two adult children and we wanted them to be able to live their lives without having to give up too much for their mom's care. It made caregiving a bit tougher for me, for sure, but did make my wife feel better seeing them be able to accomplish things they wanted to in their lives. It is a fine line to walk and a very difficult situation in caregiving.

I can tell you I fought depression and being anxious during much of my caregiving years for sure! It is impossible not to I believe! Plus it is an incredibly heavy burden to carry! I like to say "Superman and Wonder Woman only exist in the comics. Caregivers can do their best, but it is impossible to be a Super Hero!

What kind of hints and techniques are you interested in? Any particular area of caregiving! Folks here are always very happy to share what they have learned during their caregiving journeys!

Strength, courage, and peace!

Thank you Scott. I too have bouts of anxiety and depression but try desperately to take one day At a time. I fear being unable to care for my husband and leave a double burden on our children. 3 have younger school and college age children, 1 has grandchildren and all are still working besides. They are very supportive even so. My main concern is that my husband cannot find his words and is unable to communicate his needs. I'm going to ask his neurologist if we should look into some patient trials that may be available if it's even worth the time. Just finished with the 2nd speech therapist who was unable to help. It is a progressive disease and he may eventually have trouble swallowing choking and not be able to make any sounds. I'm scared. He doesn't know this. He's not very active. Sits most of the day but is doing physical therapy lately. Sorry to ramble. Looking forward to chatting..

Good evening @dianajane You aren't rambling at all! Just doing what every caregiver I have ever met has done....search out some way to deal with the sense of loss we each grapple with daily, the isolation of caregiving, and looking for any hint, tip, or kind word we can find to help us have a day a tiny bit better!

My wife was never qualified for any of the patient trials during her illness, but she would have done it in a New York minute! She said, over and over, if her suffering could help someone else in some way, she'd do whatever she could.

One thing which occurred due to my wife's illness was it had a positive effect on our grandsons. Seeing the situation of their grandmother they developed an amazing deeper empathy for people in their lives. I never saw that coming for sure.

Feeling helpless when we are caregiving is a double whammy. It hurts us inside as we wish we could do more for our patient and outside when we so want to see our efforts help improve our patient in some way -- any way at all!

I hope Connect can give you the same support as it has me!