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temper13 Asked April 2022

I can't handle this "going away'" thing that my husband is doing. I need your advice!

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

Countrymouse Apr 2022
You can buy a pulse oximeter online very cheaply if you want to monitor Mike's O2 levels yourself.

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.

MJ1929 Apr 2022
It wasn't my husband but my mother, but the story's the same. My dad died (married 66 years and soulmates), and within a couple of months she'd "taken up" with her old high school boyfriend in her mind and eventually was married to him. (Apparently I was the maid of honor.) She never mentioned my dad again.

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.
ArtistDaughter Apr 2022
That's interesting that you felt you hadn't much else to mourn with your mother's passing. When I lost my dad I was in a sort of shock type grieving for a long time because it was a sudden death. With my mom it was 10 years of her slowing leaving, but I grieve her even more profoundly. It hurts me to the core of my being every single day to be without her and that surprises me. I think it's because she needed me, eventually trusted me to take good care of her and make her decisions for her for so long, and because she became so much a part of my every day life. Grief takes so many forms, doesn't it? I also have still different kinds of grief for my sister and brother.

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Clairesmum Apr 2022
Counseling can help....ideally someone who is familiar with the grief of losing your life partner....some of what is happening to you may be anticipatory grief.....when he 'goes away' that seems like a preview of what your life will be after he dies...And you are also grieving that the man you loved and still love is changing in ways that cannot be stopped and lead to disintegration of his personality, etc
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.

iameli Apr 2022
I’m so sorry this is happening to you. It’s obvious you love him very much and the idea of losing him is terrifying. Is he in a care facility now? I suggest getting as much information as possible about his condition from the medical professionals and maybe speaking to a counselor to prepare yourself for what’s to come.

funkygrandma59 Apr 2022
It sounds like you my dear are in denial about your husbands dementia. It really doesn't serve you any purpose at this point to continue to live in denial, as all it hurts is you.
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.
Fawnby Apr 2022
I totally agree. Have had parents and relatives and husband with dementia. They are gone and there’s no going back. Better to accept and disengage somewhat than tear oneself apart over something that is over.
PeggySue2020 Apr 2022
Go watch Black Mirror San Junipero right now. It’s on Netflix, it’s on Amazon. It’ll be the best 20 bucks you’ve ever spent.

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.

lealonnie1 Apr 2022
You cannot prevent an elder suffering from dementia/ALZ from going into their own fantasy world, no matter how hard you try, or how silly you think the whole matter is! Nor do the episodes have to do with 'lack of oxygen' but with brain damage caused by the disease itself. You may 'want him around' mentally, but that's unlikely to happen. Acceptance is the key to the matter with your DH, not you trying to 'fix' him or change him into something he no longer is. If he's with Johnny Depp, so be it. Ask him about his visit and act genuinely interested in it. This isn't about you 'feeling grounded' when you're with him; it's about how you can best help him along with his condition and enter his reality now.

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.
Fawnby Apr 2022
My mom thought she was going to marry Elvis. She’d watch out the window for him all day. It made her happy. She was gone but lived 4 more years. I hope she’s with him now.
JoAnn29 Apr 2022
My grandmother died in 1987 from ALZ. I remember them giving her oxygen to help but...she still had ALZ. Oxygen is not a cure. What you need to do is enter his world. When he says he was with Johnny Depp you go along with it. Your sister is right that a time will come where he doesn't come back. TV and dreams will become part of his reality. He will not be able to differentiate. My Mom would ask me "Did this happen or did I dream it". (We have very vivid dreams in my family) Once she told me the doctor wanted to talk to me. It was Dick VanDyke on Diagnosis Murder.

Enjoy the times he "is there".

MeDolly Apr 2022
Where he is mentally is where he is, it is about your acceptance, and, understanding that this is your new husband for now. Tomorrow who knows, his illness and progression is beyond your control.

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.

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