Hi Guys. Mike got back [in his mind] from meeting Johnny Depp for heaven sake, so I know it's delirium from lack of oxygen. This is so very hard on me. I am repeatedly asking the nurses to check his oxygen. He was gone for five days and what a story he told me about his adventures with JD.
It's very hard on me when he goes. My sister told me to quit living in a fantasy world and wake up to the fact that one day he will 'go away' and not come back. I wish she could understand but her husband has been gone about eight years now and frankly, she doesn't miss him. Never has.
I guess I want him around until the end. Is that so bad? I feel grounded when I am with him and no one seems to get this.
Temper
Is he watching much t.v., by the way? You could turn it off and substitute music. It won't stop him going away but it might make the destinations less lurid and less topical.
It hurt me to the core to think that my dad, who had been her caregiver and was the best man you'd ever know, could be forgotten just like that. However, I eventually realized that the Invisible Husband was reality to her, so I stopped worrying about it and embraced this fantasy as reality because it was HER reality.
We had Dan the Invisible Man in our family for nearly three years, so thank goodness I stopped fighting it. He kept my mother from being sad and lonely, and the caregivers at her memory care said she handled their lockdown much better than most residents because Dan never left her.
What surprised me was that when my mother died last July, I didn't feel the kind of grief I had when my dad died. I came to realize I'd been grieving the loss of my mother for years already, and there wasn't much left to mourn. I didn't sign up for extended grief, but apparently I had and didn't realize I'd been grieving since 2014 until she was gone.
It's a tough way to have to experience grief -- losing them while they're still here -- but I believe that's what you're going through. Please see if there's a support group somewhere that you can join. You don't want to do this alone if you can help it.
A therapist might. help you explore what is it that leads to your feeling of being 'grounded' when you are with him, and help create some rituals/meditation that help you to return to that safe center even when he is gone away.
Or a caregiver support group, ideally led by a licensed therapist and not a peer volunteer, could help you connect with others who are struggling with anticipatory grief.
You are in a hard place, so just be gentle with yourself.
The husband you knew and loved is no longer there. You may catch little snip-its every now and again of the man you fell in love with, but you must understand that he will only continue to get worse.
You must just meet him where's he's at. If he's with Johnny Depp, then go with him there. It will make your life so much better and easier.
I would recommend reading the book The 36 Hour Day, and watching some of Teepa Snows videos about the disease of Alzheimer's/dementia so you can better educate yourself. You will be much more capable to deal with what lies ahead if you yourself take the time to learn as much about the disease and what your husband is going through and will go through.
I wish you the very best as you take this life changing journey with your dear husband.
San Junipero is a sci-fi concept that came out of what they call reminisce therapy, and shot from the POV of the protagonists, who were young in 1987. I despise millennials trying to make 1980s movies, but they get every little detail right. It’s not until about three fourths of it that it’s divulged it is all in their minds, assisted of course with ai tech that doesn’t quite exist yet.
They go places we don’t. That aren’t objectively real, but to them, it’s reality.
Your husband is acting perfectly in line with how dementia/ALZ folks act when the disease is advanced. My mother used to tell me long winded stories about how the caregivers in her Memory Care were moving her to a different hotel every night and taking her to different fancy restaurants, too, with entertainment. And how tired she was from all the running around. I never 'corrected' her b/c it was HER reality she was living in, and her right TO live in that reality. I'd ask her questions about the new hotels and the different meals she'd had instead, and so things went a lot smoother that way.
Enter HIS world and accept it.
The “Dont's”
· Do not reason and argue
· Do not demand that they reason or problem-solve
· Do not demand that they remember
· Do not demand that they get their facts straight
· Do not correct their ideas or scold them
· Do not reorient them
· Do not think that they are being uncooperative on purpose
· Do not think that they really do remember, but are pretending not to
· Do not use a “bossy” dictatorial attitude in care
· Do not act with impatience
The Do's
· Enter into their frame of reality, or their 'world'
· Be aware of their mood or state of mind
· Use few words and simple phrases
· OR use no words, just friendly gestures and simple motions
· Do everything slowly
· Approach from the front
· Wait for a slow response
· Constantly reassure them that everything is 'OK'
· Keep people with dementia comfortable 'in the moment' - every moment
· Maximize use of remaining abilities
· Limit TV or radio programs which they may feel are frighteningly real
· Maintain privacy
· Provide a safe physical environment
Language Needs
· Use short words
· Use clear and simple sentences
· Speak slowly and calmly
· Questions should ask for a “yes” or “no” answer
· Talk about one thing at a time
· Talk about concrete things; not abstract ideas
· Use common phrases
· Always say what you are doing
· If they repeat their question, repeat your answer as you did the first time · Give them a longer time to process information
· Wait patiently for a response
· Be accepting of inappropriate answers and nonsense words
· Speak softly, soothingly and gently
Best of luck to you.
Enjoy the times he "is there".
Perhaps you are in need of some therapy to help you deal with this turmoil you are experiencing and help you to prepare for the inevitable.