Husband diagnosed with MCI, meeting criteria for probable CAA.

This is just such a difficult situation to be in. No one understands it until they become a caregiver. When a loved one can no longer drive, shop, cook, manage money and medication, etc., the caregiver essentially gives up their entire life and future for an unknown length of time.

It only gets worse when the loved one can no longer dress themselves correctly or figure out the mechanics of using the restroom. As I have learned, others mean well, but there is no REAL help. Your loved one needs constant assistance.

You will find much support and many good ideas here, and on similar forums for caregivers. We toil away in silence, mostly hidden from society. There are 53 million unpaid caregivers in the US alone. When my dear wife was still able to travel, we used to say this: For every gray-haired tourist you see on a tour bus, there are two others trapped at home as unseen caregivers. Now I am one of those unseen caregivers.

For reference, I have been caring for my dear wife with vascular dementia for nine years. My life as I knew it just stopped suddenly in 2015.

Hang in there, and know you have support here.

Love Bill2001

I'm learning tht this is a shared experience. Thank you for the hugs. It helps me to read of others dealing with the disease. I fear of other simple health issues like colds, upset stomach, etc. becoming much biggr issues.
It took me a while to learn the different types of dementia. My wife did not really had any parkinsons like symptom before her dementia onset. She was clearly heading for LBD.
How does one decide when this is too much to do at home? I am a firm believer that staying in ones home as long as possible is the best for us and for the whole elder care system. Some points in time will be easy: rapid decline in health.

I would highly recommend a wifi camera system in your home. I have one by her bed, one in the kitchen, and one near the laundry. It has given me some limited freedom. I can monitor her on my phone. It's private and reasonable to buy and install

It can be lonely being a caregiver. I learn something new every day. Yesterday, my wife was scheduled to go out to lunch with a very good friend of hers. I went through extra effort to get her showered, hair washed, and dressed nicely, feeling good about myself, to only have her get an upset stomach. We had to cancel the lunch and the rest of the day went downhill. But today is off to a good start.

I asked my husband's preference if I could no longer care for him, and thought I'd better ask while he's still fairly competent, cognitively. He said he prefers to stay in our home, so I may need help here someday.
I read everyone's posts to try and stay on top of things.
Thanks.

My wife's sister has advanced parkinsons. Her husband's health has started to fail. Actually his health is worse than hers right now. They just moved to an assisted living space last week. Their children, in Portland, searched for a suitable place for them, and they love it. They were in denial at home for over a year. I would get emergency calls from them, 30 minutes away, to come right away to help. It was not good and dangerous. But emotions take over. They were going through the stages of grief. They were in denial. They thought they were losing their home. I hope you can find help in your home. There are some true angels out there that do that kind of work. You should explore all the resources you can find.

We just completed 8 weeks of in home physical therapy for my wife. What I learned. It takes a doctor to request therapy. Then, I found a home health care business, They did an in home assessment and scheduled visits to help us get the proper excercise routine for her health. She is weak and has trouble getting up off of chairs and toilet. You have to have a defined goal with the therapists. My wife loves to swim. She hasn't been strong enough to swim in over a year. Our goal is to make it back in the pool with some degree of ability. We learned there is pool therapy also. She could get in the pool to do her excercises with the help of a therapist in the water.
If your doctor agrees that therapy could help, medicare will covers a certain amount of visits. We didn't have to pay.

Caregiving is very humbling. I pride myself in being a problemsolver. I try to be in charge of taking care of my wife but tend to get humbled often, sometimes daily. Ilike to cook and grocery shop. Some days managing a kitchen is a lot of work. I did a fair amount of cooking before my wife started MCI.

The prune juice event
One of the possible symptoms of lewy body dementia is constipation, sometimes severe constipation. We've been there and done that. The signals from the brain to different body systems just keep failing slowly. Eventually all systems are affected. Our solution is be dilligent with stool softeners. Prune juice also helps. In my desire to be prepaired I had an extra half gallon bottle of juice. It didn't fit in the frig so I put it on the pantry at eye level. An hour later coming back in the house there is prune juice dripping out of the pantry. She had tried to open it and moved it just a little, enough to drip. So today was the day to clean the pantry....

I realized with my brother, for his care and safety, a residential placement was important. And so I wouldn't become a grouchy, resentful, but loving sister. I cried for 6 months before placement. He seemed to improve somewhat with greater social opportunities than I could have provided.