Joining with a thank you

Metta

Hello,

After a few months of reading and searching this site, I have decided to join to thank those who have posted advice. You have been a lifeline, and I hope that my experiences can be helpful to others here.

DH (77) was fully independent, driving, paying his own bills, and living a good life a year ago. Looking back, I realize now that he had cognitive decline that I didn't want to admit. He was always so healthy, fit, often biking 10-15 miles a day. He had started to have trouble using the remote control on the TV, organizing his calendar, and he lost interest in his bike, falling several times due to lack of balance. He also never regained interest in social activities after Covid, when we had just moved to Florida, so we have no friends here.

After two open heart surgeries in November 2024 and hospital delirium, he never returned to baseline. He improved temporarily and then it was like he "fell off a cliff." He forgot my name on Christmas morning and could barely walk with a walker by the end of January.

In February 2025, I had to call 911 when he thought I was an intruder and pinned me in the shower. I thought I was going to die. He had never been violent. In the hospital, neurology diagnosed him with NPH (Normal Pressure Hydrocephalus). I was very hopeful that his VP shunt surgery in March 2025 would reverse his decline. It did help with his mobility, but not anything else.

DH was probably MCI (maybe Stage 3) a year ago. He is now Stage 6d / 6e. Nothing shows on an MRI, CT Scan except "normal aging." He had the blood test and spinal fluid tested for Alzheimer's, and they were negative / "low likelihood." So we don't have a diagnosis except for "neurodegenerative" and no hope for anything except for the end to not be painful.

I have been determined to keep DH at home because this was his dream home, our home. Thanks to all of the advice here, I have a MC plan B chosen, but I do not want to place him. We have been married only 11 years, together for 16. His two adult children have ceased all contact with us, leaving me alone to care for him. They did not like the legal paperwork (POA, etc. that favored me) and the reality that he has a great pension but no money to pass on to heirs, including me, just our home. I work full-time from home teaching. We have a CNA who works for us 20 hours/week so that I can work and buy groceries.

Thank you for letting me join this community. None of us would have ever chosen to be here. I have no family, and we have few friends left who ask how we are doing. I am 55.

LearningCurve

Welcome to this family! It has been a God send for me. I am on a huge learning curve and am very thankful for all the kind caring folks here. The info and support has been priceless!

Jgirl57

Welcome and thank you for sharing!!

Dio

Welcome to the place where none of us wants to be in. You'll have lots of fellow caregivers who understand with lots of info and support.

charley0419

best group I ever joined I’d be lost without you all, no one knows unless they live this nitemare. Keep the faith

Timmyd

Thank you for sharing. That is a very well written introduction. One thing I tell myself repeatedly as I am traveling this journey is that disease progression does not mean care gets more difficult. I know that is not always true but for some people the most difficult stage to manage is not at the end.

Believing that it can get easier as we get further along gives me something realistic to hope for.

With disease progression, medication adjustments, improved care giving skills, and some outside help, the future is not always more miserable than the present.

Biggles

This site has been my life saver too. The kindness, knowledge, acceptance and virtual friendship have helped me so much. Articles on this site particularly ‘The Cavalry’s NOT Coming’ and ‘The Caregivers Brain’ are brilliant printed out on my fridge for ready reckoning. I have shared these with friends and even my suicidal very sweet niece (thank you Bill). I don’t know what to expect next but I know it’s very slowly one step at a time with the help and advice of those on this forum. Thankyou.

wose

Welcome to the site no one wants to be a part of. Thanks for sharing and just know the kind people here will have your back. My DH is same age and stage as yours and both of his sons and grandkids abandoned us… so sad. I still lock my doors. bedroom and bathroom out of fear. No questions are off limits here and it is so comforting just knowing someone is out there for those of us that have nobody. I still remember from years back, one of our members wife @M1 told him to buck up… so I repeat that to myself a lot…. Buck Up Betty even tho my name’s not Betty🥳 Anything that helps these days.