What is next

Welcome. I am sorry you are here. Others here will tell you to read The 36 Hour Day. It will help you prepare for what’s next. I highly suggest that you get a plan b in place immediately. This will involve finding in home care and touring memory care facilities to place your loved one on the waitlist. If something happens to you and you can no longer care for your loved one, you need a backup plan. Make sure that you have a gps tracker on your spouse. Notify your local police or sheriff’s department of your spouse’s condition. They have Project Lifesaver which will place your spouse’s picture and background information in a central database and allow for gps tracking through a watch they provide in the event your spouse gets lost or is missing. I am assuming that you have seen an Elder Law attorney and have taken care of all legal documents. If not, do this immediately. Come back here for help. Everyone is supportive and extremely helpful.

Welcome to the forum. You will get valuable information and support from this group. You definitely need a plan B in place. I was in your situation being the only caregiver and I had no children and no family close by. My plan B was going to be a memory care facility. While investigating those, I tried some in home caregivers and the third try worked well to give me a break a couple times a week. Another option is adult day care which provides socialization and engagement in activities. It’s better to try some type of respite earlier rather than later, in my opinion, if only for your own sanity. Your role will get harder later.

Managing the family members who contribute so much less that you would expect or hope for is hard. That is a subject that comes up frequently in this group.

This is my approach. I often fall short of my goals. But here they are.

The disease has already created an enormous level of unpleasant emotions (sadness, grief, despair) in myself, DW, family, and friends. I am not going to do or say anything that is intended to add to that pile. No guilt, no shame, no snark. Any contribution I get from any source is met with sincere gratitude and appreciation, regardless of how short it might fall of what one might expect. People who aren't involved who I think maybe should be: I either tune them out by spending no thought cycles on them, or I try to empathize with their circumstances (meet them where they are at).

"She cannot get access to drive and I keep keys for me to get back in because she has started to lock doors"

Yes, you have to watch out for this. My DW did the same to me and I now carry our house keys on me always.

These are just my thoughts based upon my life experiences. It is fairly common for close family members to be heavily involved, and also common for them to be not involved. I have also seen things in between.

About 12 years ago my mother was diagnosed with terminal cancer and died about 6 months after that. It was a short journey compared to dementia. She was the matriarch. There were many family members who disappointed me in their lack of interest in my mothers' condition. Other people stepped up. In general, I think cancer is easier because people can still connect. What I have seen with dementia is people try to connect and fail in a way that is very scary to them. That makes it harder to try again and the contact eventually falls away. On the other hand, there are people who I may not have expected, but stepped up and continue to help in the most amazing ways. Even when DW and myself make the rare public outing, it might be someone like the receptionist at the dentist or a clerk at the grocery store who "gets it" and is able to really shine bright, if only for a moment or two.

There is this quote I ran across on the subject that I found interesting:

"Let people do what they want to do, then you will see what they would rather do.   That will answer the questions you have...."

My DH kids aren’t really involved in his life. They drop by every couple of months to say hi - never for respite or other help. I think it’s too difficult for them to see their dad in this state of decline. My thought is if they’d come over more often it wouldn’t be such a shock to them. But sure, visiting every few months to going to be disturbing. I hate where we are and I’m sure they do too.

My wife's Neurologist tested her in December. He said she was at 4.5 on a scale of 7. He said typically the patient enters a Memory Care Facility at 5 or 6. Some of this depends on how the caregiver is doing. I plan on keeping her at home as long as I can. At the advice of our Doctor I did get my wife on a waiting list at a Memory Care facility that we had picked out. If they call with an opening we can turn it down until we need it.