A dual existence

storycrafter

Though I'm conscious that a qualified, skilled doctor made the diagnosis of my dh's condition, it's as if my mind likes to pretend I live a "normal" life like my friends and acquaintances. Some part of me "takes vacations" from the reality. It's as if I've become adept at living in two worlds, side by side. I live with one foot in the world "normal" people live in when I go out in the world. And one foot in the other world that exists when I walk through the door into our home.

Also, when others seem to question the diagnosis, though they may just be trying to naturally focus on the positive, I find myself questioning it too. It's disconcerting to feel the incongruence. I need to remind myself to reframe what I'm hearing from those not living in my shoes. The comments and assurances, "Oh, he looks good/sounds good/seems like he's not declining like you'd expect," butt up against what I'm dealing with inside and at home. When I'm in need of validation, such comments are annoying.

One of the things I seem to need most, in the ongoing effort to cope and adjust, is validation of what's real. It's too easy for me to go into wishful thinking, minimizing my own reality. It's one big reason I come here to read. It helps me feel more sane in some important ways, to have the affirmation found in reading others' stories. Though our situations may be very different, and we're all in varying stages of the process, we all share a strange duality most of the world doesn't understand.

So. I'm trying to be charitable instead of annoyed by what can sound/feel like denial and dismissive unacceptance. I need to remember when others focus on the positive, I can put a positive slant on it in my head and remember they mean to be kind. I can't possibly expect them to know what it's like living with dementia in my particular situation (even if they have known someone with dementia and assume they know what I'm going through).

Thank you for being here and "listening" to my late thoughts. What I've written isn't well thought out, but I hope it makes some sort of sense. It helps to get some of it out of my head.

DiBush

You stated this conundrum perfectly! I, too, find myself in two different worlds. I understand and thank you for your thoughts!

M1

Storycrafter I think it's natural for us to want to minimize how affected our LO's are. When we see the changes so gradually and we remember and project what they used to be like, we minimize how seriously impaired they are. When I moved my partner recently, one of the cooks at the new place wondered to me whether she really needed to be there--she's still quite verbal, can joke, and has a good sense of humor, so she comes across as much more functional than she is. But ten days later the same cook said to me, "I see now." That was validation, to me.

yes it's a very strange dichotomy. I don't try to explain it to anyone except this group.

Denise1847

I get the same thing from some family and neighbors. I just respond that people with dementia can sort of hold their own for a little while, but they can come visit any time and get a bigger picture. People try to minimize it because it is such a devastating disease, and they don't know what to say.

Right now, I do everything I can to keep my mind focused on motoring through this maze. I am really in this alone so I really don't pay much attention to others' unless they have walked in my shoes. I have decided that I will survive this and will do everything I can to support my DH and have no regrets.

Pay no attention to the people behind the curtain, you know you live in the land of OZ at home.

Blessings and God speed.

toolbeltexpert

Story crafter you write well, no problem understanding what you said. I feel that way as well as I start having new relationships in my new neighborhood and I met a lady last Friday at a oldies music fest they put on in the town I live in. I made it clear to her about being married to someone with Alzheimers. A young man next to me asked if this lady was my wife,no I replied, I explained we just met. One foot in one foot out, nailed it, but the shoes are tied together never far apart that way. Wanting socialization and friendship but always wishing for what I had, now just my memories, hers are gone mostly. Validation for my friends from church became clearer when a young man and his aunt visited last Sunday and dw ask if they were married, he's in his 20's she is in her early 60's. They also noted that dw has stopped asking about a member of their family who has passed away not only in body but now in dw's memories.

It's a long way home

When you go the way you came!

Goodbye only comes,

When they get to home again.

Sights and sounds familiar

Go flashing by the way.

70,60,50,40

Then 30,20,10

And almost to 1 again

Days make months

And months make years

It's a long way home

When you go the way you came!

Just some rambling sorry.

Stewart

ThisLife

Your message is quite clear. I used to get angry at the comments on his functioning early on as they were said in front of H and then he was sure I was nuts. Repair people saying he seems just fine. My eyes have rolled so much I'm not sure they're even attached in there anymore. I think these comments stem from a desire to distance from the issue of dementia as it is just too scary. The ones who know even a family member though not directly involved in care, who "know" how difficult it is I believe mean well.

But when you receive a comment that gives validation - A sharing of a challenging situation with a loved one, a doctor who takes the time to hear, understand and reassure you... those are priceless.

Joydean

Storycrafter you have a wonderful gift, everything you write is so crystal clear. There is a couple that we met and became friends with about 8 years ago. They are older than us and they have a lot of medical issues. But they don’t have dementia. They of course know David does, but for some reason they can’t admit it. They make more excuses for him than I do. So yes we do live in 2 worlds. Some days I even think I’m nuts, then I see the reality and want to scream and cry at the same time. But like everyone else I just keep doing the best I can for my dh.

Just Bill

I know what you mean exactly living in two worlds. At home I am a captain on a ghost ship going nowhere. In the world I present myself as stoicly as possible. Everything is under control. She has good days and bad days is about all the detail anyone gets. I play golf, bet, win, and lose while insulting and getting insulted by my golf buddies. I go to work and solve problems, create, teach, manage, produce as well as insulting and getting insulted by my coworkers. I normal it up as much as possible while moving around in the real world. When captaining my ghost ship the weirdness just keep increasing. Luckily I am still able to bring my wife to golf and work so they can see her progression from week to week and help me feel normal and I appreciate them for that. She had a psychotic episode tonight, 3 years ago that behavior scared me. Now I worked out through it. It hardly made a dent emotionally. I am used to it. What a surreal experience this is. Just another day in the life.

Crushed

DW has been in a facility since 2017 and has had no idea who I am since 2018 I say am married De Jure but not De facto. I make sure she has excellent care. I see her on facetime almost every day. and try to have a sort of life. But the ties of love and memory run very deep. A female colleague says I am more married than most husbands.

I am going on a cruise starting Sunday. I don't actually know when I will be back.

Whyzit

Storycrafter you make a lot of sense and thank you for sharing. I made up my mind today that it is time to get going on placement for DH. The leader of the day program dh attends two days a week disagrees because dh excels compared to the others in the group. He isn’t with dh all the other hours in a week, when the bathroom gets flooded again damaging the ceiling in the unit below or when dh wanders about our unit in the middle of the night and eats whatever he can get his hands on, or when dh wakes me up at 3am to order a pizza, etc. Our loved ones can put on a good act for outsiders whose judgement unfortunately sometimes counts more than ours.

Best wishes to all!

RCT

I can relate and you spoke clearly….I have been struggling with this very thing. When my friends stop by they always say how good he looks..he is “fine”. He is not fine and if they spent 24 hours they would maybe start to understand. So I just agree with them….and at his memory class they tell me how great he is doing! I have accepted that I am living in two very different worlds but I still feel like I am nuts at times! Thankfully our primary doctor totally understands and supports and validates. Friends and family just don’t get it. My local support group understands too so I know now who to turn to. It has taken me quite some time to learn how to navigate.

saltom

Storycrafter you hit a nerve with me. I don't think the dual existence ever stops. DH died two months ago and one one hand I grieve for the man I married and dream of his still being here. On the other I am relieved we are both free of the daily grind that was slowly killing both of us. Then the guilt for not doing more sets in and the grief starts all over again. I I have not been reading much on this site but am glad I signed in today. In a round about way I found affirmation in your story. Thank you.

Rozieglow

Reading Storycrafter's articulate description of the situation and the comments that follow is such a comfort to me. My DH has not yet been diagnosed, but I haven't pushed the issue because he has threatened suicide several times, saying he refuses to go the way his father and other relatives with Alz have gone.

So the reality of the situation is tenuous. With a couple of exceptions, the people I've confided in have all downplayed my concerns. I joined a local support group, but they only have zoom meetings which don't work because my DH comes in and out of the room and he will know if I'm talking about him.

What has helped somewhat is keeping a log of some of the issues and behaviors that arise. This way I can look back and see progression, know that this is really happening.

RickM

I agree that caring for my DW creates a dual existence. However, to me the existence in Dementia Land is pretty isolating being that it is mainly the experience of only myself and my wife. Further down the road in Dementia Land it's becoming nearly impossible for DW and I to share time in Normal Land. Activities and socializing become less fun and more of a burden for me. Thus I spend less time in Normal Land and more time in Dementia Land. This becomes frustrating and will likely become unhealthy for me, putting my ability to provide loving care at risk. Thus, I have decided to leave my DW in MC following a short trial/respite period.

In MC only Dementia Land exists...until you get the bill, anyway. There are people who support her and support me. There is a community and together we have the opportunity to share our lives. Life in Dementia Land is no longer so isolating. Additionally, now I have fewer concerns and constraints when spending time in Normal Land, not to mention more time.

At least that is part of my "justification" for moving my wife. Does having her in MC make the loss any less? No. It still hurts, like nothing I have ever experienced.