I've got three possible candidates to care for Jim, no, four.
The one who runs the joint (I call her the UberMater) interacts with Jim the most because she takes care of everything--cooking, cleaning, shopping, bills, you name it. But she doesn’t like Jim very much. She wants to get things done; he impedes her progress. She wants things tidy; he’s a mess. She admires competence and demands an explanation for every strange comment, forcing Jim to explain what he means and why he said it, even though he now doesn't remember saying it. Kindness wastes time; impatient tolerance is the best she can offer. So okay, not the best person to care for Jim.
Her first lieutenant, Anger, is always at UM’s side, ready in a second to pop in and take charge. She is pissed and raging. She despises the situation, knows the cause but doesn’t care, and points to Jim as the reason everything has gone to hell. He has ruined her life, taken her love, made her a house slave, stole her future, left her alone. It is his fault and she wants him to know it. She mutters a lot. There is also frequent eye-rolling and occasional foot stomping. Definitely not the person to take care of Jim.
The third, the Artist, would be a good companion for Jim. She would play with him and love him up and let everything go and spend the money on goofy presents and dark chocolate, just to see him smile. Then she’d paint his portrait when he was sleeping. But she can only give as much as she is given, and these days, there is nothing left to offer the Artist, so *poof* she is gone. She could take care of Jim, but she is AWOL.
So that leaves one last person, Sad Girl. Sad Girl is the one who loves Jim so much it breaks her heart to look at him. She feels all the love and all the love lost and longs for old Jim. Every stutter, every broken thought, every frustrated outburst tears her up. She is tender with him, she holds him and rubs his back and whispers sweet words. But she is sensitive so when he says unintentionally thoughtless things, it really hurts. It is exhausting to feel so much sadness and grief without being able to withdraw into yourself. She cannot heal; the pain is fresh every moment. Sad Girl was never designed to carry this kind of load, but it looks like she is the best candidate to lovingly care for Jim, tears be damned.
Definitely Ubermater and Anger. It describes me exactly. I could not have described it any better. I am now in the process of placing him for his good but also hopefully so I can welcome the artist in and I am sure sense the presence of Sad Girl. Most of my tears have been of frustration and not sadness. I went out yesterday and ordered the bed for his room as I must furnish it. I prayed before I went in and it went okay. I thought at first I would be upset at having to spend the money but I was not. I had peace about it so that is good. Next week I visit the funeral home to get written estimates on the funeral per my financial advisor's direction. On August 17 my kids and I will be moving furniture and getting hIs room set up. I can hardly believe the time has come but it has. I know if will be difficult but it has to be better than things are now. I am so tired of being pissed off and angry. IT does seem though that since the room became available my anger has decreased and I seem to have more patience. I take that as a positive sign.
well the perfect candidate would be a dose of all of them. on varying days we have to call upon parts of ourselves different from yesterday to deal. incontinence say calls for the ubermater to get the job done. but when they are sick and hurting sad girl needs to come forward to offer compassion and caring love. Miss Anger should go about her foot stomping in private to help relieve stress and to acknowledge this disease wont last forever. there will be alife after and what we make of it. bunny that was a terrific comparison of all our characters. I hope you find a happy medium divvi
Bunny, I always look forward to reading your posts. This one is as great as the last.
When I did have Lynn home with me all those years it was "sad girl" who was present almost always. I had a boat load of anger but I was able to direct it towards the situation, not Lynn. I was fortunate that I never had feelings of anger towards him and never once did I blame him for being sick (perhaps because I became disabled at a young age and knew he couldn't help it any more than I could). As for the "UM", I guess I was never able to leave "sad girl" long enough for this persona to present itself. The "Artist" is who I desperately wanted to be for Lynn, and in the earlier years I was able to. We had many beautiful moments in the early years of dementia, but once the rages and aggression started the "Artist" went into hiding.
Lynn has been in placement for 4 1/2 years, I now have the luxury of always being the "Artist". I spend time with him every day and do just anything and everything I can think of to make him happy, to keep him engaged. That beautiful smile of his still lights my world.
I also sing to him daily, one of the songs I sing is Just To See You Smile......
"Just to see you smile I'd do anything, that you wanted me to When all is said and done I'd never count the cost It's worth all that's lost Just to see you smile"
As sad as it is not having him home with me, I am eternally grateful that I can now be the caregiver and wife I wished I could have been when "sad girl" was running the show. I feel so badly for all of you who are still overwhelmed in the sadness..... ((hugs))
But in the early stages, when we really don't have a grasp, yet, on what this disease is all about and what the price of being the caregiver is, we go through all the phases until we finally accept what it is, where it will ultimately go, and stop fighting to solve a condition we cannot, have no control over and get to a point where we learn to let go of family and friends who have written us off as we soldier on until the bitter end.
Along with Uber Mater, Anger, Artist and Sad Girl, I think there are a couple of other helpers.
The first is Paula Pragmatic, who takes a reasonable approach to everything that needs to be done, and does it as best she can, without complaining. She's not as efficient as Uber Mater, but she also doesn't dislike her DH, she just accepts him and the circumstances as best she can, without putting any emotion into it one way or another.
Then there is Nurse Nancy, who hands out the pills, fixes the little ills and is always there to make sure that DH gets the care he needs. She wasn't professionally trained, but she is learning as she goes along and always try to make her DH comfortable. She doesn't love her DH in the same way as Sad Girl does, but she cares enough about him that she will nurse him without complaining.
These two personalities are more likely to show up in situations where "emotional divorce" has already taken place, because before then, Uber Mater, Anger, Artist and Sad Girl have taken up all the time and space.
Oh God, don't forget Zombie Zero, a year older than Paula Pragmatic who doesn't put any emotions into anything anymore because they've been fried and fell off.
Or Caca Kafka who used to be like anybody else before life took everything away except a vat of black paint and a large brush.
Or Susan Sunshine who breezes through self sacrifice and despair full of love and untouched by tragedy (though perhaps secretly resented by the less godlike).
Or Sandy Seashell who doesn't do much anymore and if you hold her up to your ear you can not only hear the ocean roar, you can look right through her.
Or Perilous Paul/Pauline, who fought a hopeless war for love and afterwards felt alright with that and learned to love a good sandwich again.
Tell me, weren't they all little personality seeds in your head that germinated and bloomed from the fertilizer of care giving? (Can you tell I've been dividing lilies today)
Now here is the real question: As you reclaim your life these last 18 months, are these personalities all being rewoven in the fabric of your being or did you stuff them in a box and bury it?
Wow! Lotsa personalities banging around inside everyone. Not too many of the happy kind. Does AD kill them or just make them run so far away they never come home?
If we stuff our poor souls into a box I would call that a tragedy. Life is complicated, people are crazy, everybody's weird in at least some way, and so am I. Get over it I say.
As to the happy kind. I am nobody's victim except my own. I prefer to struggle and wallow out on the town square because I'm not afraid to be a fool and I actually do want the answers and not just feel comfortable.
Here's what I know:
- I not only now laugh, I look to be amused and look for interesting things - I'm not making myself do things or feel oppressed by them, I'm just getting them done - I notice a great deal more around me as though my senses have relaxed because I don't react to everything anymore - It feels like I can see myself better and I feel much more like myself which is so clearly different from the years I felt under siege and under duress - I'm less judgemental in a driven way (think about what AD spouses learn to do) - I genuinely care more about my cats, my plants, myself, and the people around me - I have thoughts about the future which are questions I'm interested in answering - not threats of the unknown. I don't care to structure my future which is another realization. - My feelings are beginning to return though it's through a river of tears. I actually wonder if you have to cry to find them again. I know I had very few emotions much of last year. This needs a bit more. Emotions are not just extremes, they are the harmonies and tonalities in all moments we go through. - I'm in the entire world at once rather than the compartmentalized defensive fragmentation that survival demands from us. That has been an eye opener which Carol spotted too - I'm here now and that feels ok. I can scan around and see that I've pretty much caught up with the things that were neglected and I fought a good fight and I'm trying realistically to put myself back together. That's pretty good stuff in my book. - I'm starting to care about my own appearance and my own health. I have to see a dentist, my doctor after six years, I have a cataract, and so on which now isn't oppressive. - And finally in this list a huge one. I feel strong. I've had some fabulous moments in my time and I've been completely and utterly reduced to a pitiable state. That's quite a range. Now if I could just hit a note.
You want happy???? I've taken my life back. Well, I'm just renting the space but that's a different story altogether.
Wolf, I am glad to hear that at least in your case, the positive personalities just ran away for awhile (to use Bunny's terms) and that, with time, they come back, if one is willing to let them through the door.
And perhaps, like persons who suffer from alcoholism or drug abuse, AD care givers have to hit rock bottom in order for that to happen (who was it who said that once you are at rock bottom the only way to go is up?) Care giving is a strange addiction - a choice we don't willingly make - rehab (respite) is never long enough for a complete recovery, but just long enough that the happy personalities that were once our outward selves can stop and wave from the window of our souls, before we are once more overtaken by the responsibilities of being the spouse of someone with AD.
I am glad you are on the road to recovery Wolf. I fear that because I have not yet reached the depths of despair I have a long time to go before I can do more than just stare back longingly at those happy faces in the window.
Bunny's Lamb When I first started to read your post, I was a little confused, but then realized what you were expressing (slow on the uptake here!). Beautifully written. I think I'm all of the above - it depends on how the day begins, what sort of mood I'm in, what sort of mood D. is in, what happens throughout the day. Sometimes, I think I can be all of them in one day! Sort of like a chameleon, changing according to the "environment du jour". That's how I refer to D's moods - "mood du jour".
I think I am all of the above mentioned plus a few more-just depends on the time of day(Or who you ask) I try to remain the calm, peaceful, loving, caring, giving wife---------then all He --breaks loose over something or other and out pops as you say "SYBIL" Then we sleep and start all over the next day and try to do better.
ÜberMater has to be there to be sure that everything gets done. UberMater is run ragged from the ever growing list of to dos. UberMater tries her best but is physically exhausted. Sad girl hides in UberMater while she does her job. But Sad Girl is never far away. Sad Girl's pain is always present.
Sad girl is who I am today. Have to hide my feelings around DH And family who has been visiting. Sooo tired of being Pretend Girl! Pretend everything's okay to DH, pretend I can handle it all, Pretend I'm fine, pretend My HEART is not broken...... I've retreated to my room and locked myself in for half an hr Just want to hide under the covers and not go back out to Company. Do you ever feel that way?
The mention of family brings out another "Sybil". They are all AWOL like UFO's...strange sightings! Only to be visible when the estate is to be revealed.
Yep, pretending takes a lot of energy. I'm almost relieved that so many people have disappeared off the radar because I'm just too exhausted to put on a happy face. Heck, not even a happy face -- even an okay face is about ten steps higher than I feel most days. Here's what I'd like to do today: Go the the bedroom, lock the door, turn the AC down to 68, pull the covers over my head and watch reruns of The Office on my Kindle for as long as I want. Oh, and eat really salty pretzels while sipping ice cold sangria. And not have to worry for one second about what anyone else is doing, what they want, what they need, when they need dinner or pills or attention. Ahhhhh....well, not today.
Helps to know I'm not the only one who is too tired to want t o see some friends sometimes. Yes, the happy face is Too much work and even the okay face is not how I am feeling either.
Just want to be all by myself for a while. Don't even want to go anywhere.. I'm too tired.
Lorrie, I too could have written your message about Sad Girl and Pretend Girl that you posted this morning. I woke up this morning in tears. Wanted to hear some love from somewhere so I called my DD - she was in transit to work and couldn't talk, which made me feel even worse. I know I am tired, no, weary of pretending everything is fine, to my DH, and to others. Bunny's Lamb is right, it takes a lot of energy to pretend all is well in the world, when in reality, it SUCKS!
Yes, it be very honest I am sick of pretending that everything is "lollypops and roses" when in all reality my heart is breaking. I have never had days heaped upon days of despair. Okay, we all have mini-melt downs yes...but today I have spent the majority of my day in my bedroom crying. (I rarely cry, but rivers were streaming) I don't know maybe it's all the days I have choked my emotions out, but I just can't seem to pull it together.
I am so tired. I am worn out cleaning, cooking, caretaking, banking, playing nurse, gardener, chauffeur, and social director. Each day ....every day is a repeat of the next. No fun in mudville because the Mighty Lullie as struck out.
I am still unable to pull myself out of the sinkhole of despair and sadness . It isn't even that anything has changed today. But the reality this summer Has brought that I cannot leave him at all is hitting me hard. Today, While driving to the store without him (company over), I heard a song That brought tears streaming down my face. It brought back memories of us before AD stole our life together. I HATE what it has done toy Husband!
So sorry sweetheart. I know how sad it is to be driving alone, listening to those sad songs, realizing that I'm the heartbroken one they are singing about. It's usually about how someone has left the other one alone -- just what is happening to us. All we can hope is that maybe, just maybe, tomorrow will be a better day. xoxoxo
Lorrie, my heart goes out to you. It is so hard when you realize that you are tied down because you can no longer leave your LO alone - I am right with you there.
Today I played chauffeur in the morning. Today my dH left for his weekend 12 step retreat. He has been going to these for a decade, but in all likelihood this will be his last, and he realizes that as his dementia becomes more obvious, and he is starting to have incontinence issues. He gets a weekend away with a group of supportive men, and I get a day and a half to myself. The reason I get only a day and a half is that the retreat is 3 hours away round trip, so I took him this morning, got back mid afternoon, and then will go back to pick him up on Sunday morning. I did get a nap this afternoon, but what did I start doing then? I'm Molly Maid. His retreat weekends are the only time I can get into his room, so I am spending my time "spring cleaning" - washing chair covers and drapes, vacuuming, dusting, dusting and dusting, going through his clothes closet, getting rid of garbage, and also hiding a few things that he no longer uses (I hope he doesn't miss them). I did get a soak in the tub, and a glass of wine, but tomorrow morning I will be back at his room so that it is finished before I pick him up. He probably won't even notice that its clean...
LFL, Thanks I know that much of my depression and despair is sleep deprivation. I don't know, I think so many here have insomnia ....this darn disease takes too much space our minds occupying 24/7. No matter what, there is no getting away from a spouse with dementia. I do hope that your are finding a solution to recent problems and that DH is recovery as well as can be expected. Thanks for your support. I really appreciate it!!!!!