I think I'm in Denial: What helped you as a caregiver to accept?

@georgescraftjr I love this prayer: Psalm 23:4. As caregivers, we all pass through the "valleys" of fear, grief, uncertainty, denial and/or hardship. A reminder to have faith over fear, presence over panic, and divine guidance over darkness.
Thank you, Karla

My husband and I have been European travelers for years. The last time we were in France we took an Uber to a park nearby. It wasn’t that far from the apartment where we were staying and we decided to walk back. My husband has always had a great sense of direction so I don’t doubt what he is doing. Although this time I knew he was going the wrong way. I had to reassure him that we were going the wrong way and redirect him.

After that instance I began to realize he was often confused.

We made it safely back home but have never traveled to Europe again. My husband has MCI so I only accepted he had neurological problems after seeing a neurologist.

The entire experience does not resolve easily. It is a long process- being angry, adjusting to how to communicate with someone who doesn’t like you to ask them a question or tell them to do something.

I am not perfect and occasionally get caught up in his inability to understand. The last couple of years I have explored services that can help me when he is unable. All this planning has made me calmer.

Currently we are scheduling a fiduciary financial advisor. My daughter will go with us.

My husband is very concerned about money but I understand this is a common obsession of men particularly. I am hoping a third person can present the facts to us.

I have also keep a journal. I write down my frustrations regarding certain events where it is not possible to resolve with him. After you write it down you don’t obsess over the situation.

Best of luck working with a problem you never thought you would have.

@kjc48

...and thank you for this beautiful post. You should print it and read it whenever you need inspiration.

George's Wife

P.S. And thanks again for the morning mantra you wrote and share.

Based on my own experience, I think that not wanting to believe where you find yourself with your husband's Alzheimer's diagnosis is the reaction that most loved ones and future caregivers experience initially. Along with fear of what the future will bring and whether we caregivers will be able to manage what will come. This is not what we signed up for nor how we expected/hoped to spend our later years.
I agree with the other posts that urge you to find a support group either in person or online. This support doesn't have to cost anything. The Alzheimer's Association has a lot of resources to explore. This website was and is so important to my mental health. The people posting here "get" what my life is like.
I believe that I am a better caregiver by prioritizing my mental and physical health. Sort of like "put your own oxygen mask on first before attempting to help others".
My husband has vascular/mixed dementia that may or may not been caused in part by previous head injuries. I think that there is a genetic predisposition as both his parents had dementia later in their lives.
I also think that it doesn't really matter what the cause of the dementia is going forward. In my experience, what matters going forward and what will determine the quality of life for your husband and just as importantly yourself is educating yourself about what to expect as the disease progresses. How to recognize different aspects of brain failure and how to utilize what skills/ abilities he has left. This "Positive Approach to Caregiving" can significantly reduce the stress of not knowing what to expect and how to deal with it. I highly recommend taking the Champion Caregiver courses (4) offered by Teepa Snow on her website "Positive Approach to Caregiving" sooner rather than later because "knowledge is power" and there will be days when you feel powerless. These courses explain the stages of dementia progression and how to work with your husband at each stage. Also, very importantly, these courses discuss common feelings that dementia caregivers can experience, how to recognize them in yourself and how to find relief for yourself so that you don't burn out. I also recommend a book called "Loving Someone with Dementia" by Dr. Pauline(?) Boss. There are many other helpful books out there when you are ready to read them. Please continue to post here on this site. There are so many kind and helpful people posting here that can understand what you are facing.
Wishing you strength and courage.

@shmerdloff I personally think that we who care for our loved ones with dementia experience what is known as "ambiguous loss/grief" This I feel is different from the grief we experience when someone dies. It is hard to get to "acceptance" of our loss when our loved one is still here.
The concept of ambiguous loss/grief is explained by Dr. Pauline(?) Boss in her book "Loving Someone with Dementia". As the disease progresses we lose the person we knew by bits and pieces. They are there (physically) but not there (mentally). There is no funeral, celebration of life, sympathy cards, casseroles because the person is still here not dead. I feel that our society/culture does not support those of us experiencing the gradual loss of a loved one with dementia despite the fact that the loss is real and devastating. In a better world there would be cards to send upon learning that someone is on the dementia journey that offered support, prayers and ask "what can I do to help out" and a response card to send back with specific requests for help. Transportation, sitting with the loved one for an hour or two so that the caregiver could have a break, bringing dinner, doing grocery shopping, fill in the blank. Just an idea.

@defleurs I've been a member of Al-Anon for decades. This is a support group for people who love someone who has problems with alcohol, drugs, etc. One of the best things I learned is to write down whatever it is that is troubling me and put it in my "God Box". I am physically turning over my problem/fear to God. This small action has given me so much relief over the years as I believe that I will receive what is needed at the appropriate time. I think that journaling is like this, writing it out somehow reduces the magnitude of the fear/anxiety. I journal too. Sometimes I look back and see that what I thought was a huge problem has resolved itself without any help from me!
Also I think you are wise to review your financial situation and documents with a fiduciary financial planner and to take your daughter along. I recently changes my Durable Power of Attorney for Healthcare and Finances( two separate documents) and my will as these all had my husband as the decision maker for me. If you have a joint revokable trust you may want to look at that as well. I recently learned from our estate attorney that I cannot make any changes to the trust that she recommended unilaterally as it is both our names and my husband is now not mentally competent to approve any changes. Best of luck with everything you now have to deal with.

@defleurs Thank you for bringing up the fiduciary financial advisor. I've been stressing over this whole thing with financial plans, wills, estate plans in a blended family, where we are both executors for one another but that will need to change to possibly my husband and my son from a prior marriage...then there's revocable or a change to irrevocable, and what needs to be changed before something happens and he is not functional to sign anything. If anyone has any suggestions, please advise and/or please send me a private message. As I mentioned, we're a blended family so just trying to figure out how to protect both sides especially if something was to happen to me first....with what now is going on with his MCI. Thanks to another poster, she did mention an elder care lawyer (someone outside of who has our trust/wills now who I'm going to make an appointment to see. All so confusing and you're right, where we're trying to work through a problem we never thought we would have. Best, Karla

@georgescraftjr I did print it out and I have it right by my PC for my early morning read. Best, Karla

@ocdogmom
You are right. Good idea. One thing. It appears difficult enough for the familiar person to stay with the patient LO. The LO might be "thrown" waking up to find a new or different person there, trying to explain where his/her
wife/husband went.

I agree. I always tell my husband when I am leaving and that his caregiver will be here if he needs anything. Fortunately we were able to have a long time friend move in with us and sit with him when I want to get out. I pay her for this as well as having her sit in his bedroom downstairs from 11pm to 7am M-F to keep an eye on him when he gets up to go to the bathroom during the night (he has had many falls) so I can go upstairs and get a good night's sleep. He has known her for over 40 years. This arrangement has been critical to my physical health. I know that I could not continue to get up with him several times a night every night and still function well enough to care for him during the day. When my daughter is in town she will sit with him and is able to do her work on line. I feel that I am blessed to have these resources.