I'm new here and I want out...: (

Welcome to the forum Mia. We can all relate to your post and i am so sorry. Someone will post a link to tam Cummings stages of dementia, unfortunately they were recently removed from the website. Stages can overlap, though. Many in stage 4 have lots of rage as their deficits worsen, and we spouses are the safe target when our loved ones don't understand what's happening to them. Reminding them the dementia diagnosis doesn't help. Many have anosognosia and cannot even see that anything is wrong. Medications may help with the anger and aggression, but geriatric psychiatrists may be more helpful at this than neurologists ( to get him to go, you can tell him it's for a second opinion and don't say it's a psychiatrist).

You talk about where to start: number one priority is legal legwork, you need to have power of attorney for healthcare and finances and these need to be signed while he still can. Your own papers should be updated as he cannot serve in any capacity for you. A certified elder law attorney can help with all of these and can advise you about financial planning. You need to think about how you would finance memory care, and that may include qualifying for Long-term Medicaid for many.

Don't give up on the travel books yet. This is also time to consider your bucket list. My partner and I took a very enjoyable 25th anniversary trip to the North Rim of the Grand Canyon when she was stage 4,and also attended her 60th high school reunion a few,weeks later. Those are very precious memories for me now, as she is now stage 6 and in memory care for 20 months.

This forum is a lifeline. Hope it helps. You are not alone.

Hello Mia and a very warm welcome you. What you are facing is something most of us have experienced, so we understand. I learned very early to never, ever mention the words "dementia" or "alzheimer's." Guaranteed to cause upset and agitation of course directed at the person doing the most for them. Agreeing with his false beliefs is alright; it calms him and does not further the upsets.

You are on the first rungs of the learning ladder and you will soon be getting things in better understandable order. My failing, before I understood better, was to argue, or point out the facts and not let false beliefs stand which of course made things far worse; but I was flying by the seat of my pants in full confusion myself because I was new and did not know.

Soon learned NEVER to argue or point out inaccuracies; just use fiblets and agree with whatever belief is present; if it is about unfaithfulness; then one states that "I would never leave you; we are a team together and I will always be here for you . . " and then refocus onto another topic asap.

Read, read and then read some more re dementia. Though your spouse looks the same and much of the time may sound the same; his brain is "broken." He no longer processes things with a normal brain. His judgment, logic, ability to even understand consequences has been damaged and this will not improve. He feels and will lash out in the feeling of the moment; filters are damaged, so he will move forward his feelings right or skewed.

If he is getting highly agitated and being delusion driven to the point of affecting quality of liife, the dementia specialist can prescribe medication that can make a difference.

We find we have to educate ourselves and for sure, get all legal ducks in a row while your husband can still legally sign a document. An Elder Law Attorney, with only you at the appt. would give you much information and can often assist with positioning you best financially for the future. Knowledge really is power, so best to get all you can.

You will have decisions to make as to how to position yourself, what you are willing to do in the long term; that will evolve as you move through the early stages. And yes; our Loved One (LO) will often blame US for everything and take anger out on us; it is safe for them to feel that as they know us but does not make us feel better.

Do try to find a dementia support group you can attend, and the ALzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900. If you call, ask to be transferred to a Care Consultant; there are no fees for this. Consultants are highly educated Social Workers who specialize in dementia and they can be very helpful, and also a good place to be able to openly vent one's feelings. They can also often assist us in our problem solving. Sometimes getting counseling for ourselves is helpful in keeping us centered and somewhat lessening our stress.

Do come here and talk and read; there is a lot of experiential wisdom here and we all support one another and that now includes you too.!

Warmest of thoughts are being sent your way and we will look forward to getting to know you better.

J.

Yes, you'll be the bad guy most every day but there will be good and bad days and as things progress remember you are doing your best for him and remind yourself that you are in the right. He will never understand your decisions. Don't take anything personal, I know, easier said than done. It's very hard to see the changes in your LO and it seems they can fight you all the way.

Try not to second guess yourself and your decisions, I know I know, way easier said than done. You didn't ask for this and neither did he but now you are the sole decision maker in the family. Don't feel guilty for blowing it, for getting frustrated, for losing control or for wanting to run. We all want out, I know I do but I'll carry on as far as I can but I'm thinking that won't be much longer and I'll seriously have to think about placement, finances be dam'd. I've never heard of any lone caregiver actually enjoying this journey but I'm sure there might be a few out there. I'm not one of them for sure.

IDK, I say all of this to say take it one day at a time. Get help when you can, wherever you can. If you just can't do it anymore there is no guilt or shame in finding a place that will care for him better than we can care for them by ourselves. Take care of yourself first and don't feel guilty for it.