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The humdrum, limbo-life I lead...
storycrafter`
Posted: Sunday, June 23, 2019 5:36 PM
Joined: 12/17/2014
Posts: 1093


The humdrum-ness of it all, the limbo-life I live, feels all so strange. I live with this lost-man, and at the same time watch both our lives slip through my fingers. I try to recreate meaning for our marriage, for my own life. Sometimes it feels as frustrating and futile as trying to grab handfuls of melting jello. And here we are with so much more than many, many others; in a long plateau where he does all his ADL's just fine and appears normal to unsuspecting outsiders.

I just needed to write something, connect with somebody. No point to it really, but, thanks for reading.


John1965
Posted: Sunday, June 23, 2019 5:53 PM
Joined: 8/19/2016
Posts: 317


All ADLs in tact here, yet there are daily incidents of insanity. The bad moments are ALWAYS reserved for an audience of one — me! 

Yesterday we hosted a party for our daughter’s HS graduation. DW had a GREAT day and was a great hostess. Long story short, the day was very taxing and she melted down at bedtime - again when I was her audience of one. I am the only vessel for her frustrations, whether those frustrations come from her disease or from everyday life. 

I’m lucky to have friends and family who care and seem to “get it” but none really understand how soul crushing it is to live with a loved one who continues down the path of progressive dementia. 


Mike&BrendaTX
Posted: Sunday, June 23, 2019 10:04 PM
Joined: 7/10/2017
Posts: 603


storycrafter,

I liken it to living in a shadow world where things only vaguely resemble reality.  Dementia is one of the only diseases that takes two lives instead of one.

I have been doing the 24/7 caregiver gig for just under 7 years now.  I have abandoned any idea that my life will ever be the same as it was, or even somewhat as it was.  That door has closed; that season has ended. This season is nightmarish.

What will the next season be?  Will I still have any purpose?  Will I even recognize it as a life?  I don't know.  Maybe it will be like awakening from anaesthesia.  Maybe this season will linger on.  Maybe, as many caregivers do, I will die before my LO, so this is all there will be for me.

For now, just the waiting...

Mike


Marabella
Posted: Sunday, June 23, 2019 10:58 PM
Joined: 2/2/2019
Posts: 136


My DH is mid stage 6 so needs assistance with ADLs. I am a 24/7 caregiver with no family near to provide support and assistance. As Mike says, dementia is one of the only diseases that takes two lives instead of one. We really do lose touch with the real world as our reality is so very different and “strange”. Friends and acquaintances offer sympathy and advise me to take time for myself but these are people who have not walked this path and do not really get it. As John says, it is soul crushing to live with a loved one who continues down the  path of progressive dementia. I do not even think about tomorrow or any future. Storycrafter, I understand your limbo-life reference. It has become the norm for me and no longer feels strange.
Gig Harbor
Posted: Monday, June 24, 2019 12:41 AM
Joined: 3/10/2016
Posts: 563


It is so boring!! My husband still likes to have conversations but can't remember what we talked about even an hour ago. Every conversation is a new one and I get tired trying to explain things. We never get far into a new topic as the explanations take up so much time. I find myself not talking at all. He still does all his ADLs and I have a feeling this life could go on for years. We still go out with friends but he really can't contribute to a conversation. I get very resentful that this is my retirement whereas he has had 18 years to relax. Thank God for my support groups. The only people who really understand are the ones who have been caregivers. It is hard to find joy in life at times. I guess the song "what doesn't kill you makes you stronger" is true. We live in our own house but I do see some value in a CCRC. You can see other people just by walking to one of the common areas or going to the dining room. It would be a relief from loneliness and boredom.
Molokai16
Posted: Monday, June 24, 2019 12:48 AM
Joined: 10/23/2018
Posts: 60


All I can say is "I get it". I really, really get it. My husband's favorite pastime is watching TV all day and all night and looking for our cats. He just turned 60 - symptoms began two years ago. Going downhill. So sick of going to "renowned" doctors. Renowned for what? Being complete jerks? Being fucking moron "neurologists"? Last in their class at Podunck University? Just a couple of years ago we were having a blast on Maui. Money was flying in thru my husband's job. Top of the world. He won an Emmy, a magical night, just a few years back. Just fond memories now. Money stopped. Career stopped. Huge home repairs had to be done. I have to do EVERYTHING which requires me to think and make important, vital decisions. Yet, I am SO tired all the time. Each day a new "emergency" - sometimes real, mostly not. Please don't give me advice. I've had so much advice I want to throw up.
Gig Harbor
Posted: Monday, June 24, 2019 1:07 AM
Joined: 3/10/2016
Posts: 563


I get it. I plan all the repairs for the house, discuss them with him and he promptly forgets them. When he was diagnosed in 2016 the neurologist said the only thing that was really known to help slow dementia was walking for 45 minutes a day. Today that is what he does - walk for up to 3 hours. He also watches a lot of TV but the shows have to be simple to understand. His decline has been very, very slow and primarily related to short term memory loss. He feels bad about it and tells me I will just have to get used to it as he can't change. Molokai I would not presume to give you advice except this: try to meet other women in your same situation. They will become your lifelines and friends. They will be the ones you can say anything to and they will not be shocked nor will they judge you. I originally met three women from my town on this site and we have added to our group. We meet once a week and talk for about 2 hours. We are only a call or a text away at other times. I used my town as my name and they contacted me. Do whatever it takes to meet others in your situation. I figure that within the next year or so I might be much more tied to home so it is important to keep meeting others and they are out there in droves. Good luck.
Rescue mom
Posted: Monday, June 24, 2019 7:14 AM
Joined: 10/12/2018
Posts: 909


So much here I could have said....many friends have vanished, the ones I could most count on are gone for summer—like we used to do until this disease. Marabella and Gig, I know, my DH can’t even have or respond to conversation., and the house is quiet as a morgue..I think I could handle the work if there was someone to talk to...I’m so darn bored I think I’d cut myself just to get a break and see if anyone noticed, but I doubt I’d be able to walk away when I wanted...

Molokai,  we too had a great life. We shared things. Now I have to do every single thing, plus prevent and “fix” his messes. How can I be so tired and so bored at the same time? There is, in fact, plenty to do, just nothing any sane person would want to do.

John, the last couple times we saw family—the only semi-large group DH tolerates at all—he behaved appropriately in their presence. (No conversation, but no bad actions). Then melt-down at home. Try to explain that to them later....the most common response is but he looks so good.” Yeah, because I fought for hours to get him bathed and dressed.

Gig, on house repairs...our house needed serious, major repair. DH kept saying He’d take care of it (this was before Dx, he was showing signs but still thought maybe he just not in mood, etc). Of course repairs never done, almost has catastrophic failure. In meantime, got Dx and I proceeded with contractor. DH stood there, heard and approved everything. I warned  contractor he had Alzheimer’s. Contractor says “oh my grandfathers old and forgets things, I get it.”  Well, he did not get the Alzheimer’s patient he had to deal with, who forgot who the worker was, why he was there, and screamed he’d fire him, every hour or so.. 

I should go back to some of the support groups I tried earlier, when I wasn’t so bored and desperate. At least it would be somebody to talk with who gets it. At least they wouldn’t just say “but he looks good” if I mention DH problems.

I used to think about the life I’d have after he was gone. But I’m in my mid 60s, I question now whether I’ll be able to last long enough to have any kind of life.

 

 


Rescue mom
Posted: Monday, June 24, 2019 7:51 AM
Joined: 10/12/2018
Posts: 909


Limbo life, a shadow world...both very good descriptions of where we are. Not screaming looneymcrazy, not bedridden crazy, just kind of regular to the outsider but  a nightmare for those inside.
Dunc1129
Posted: Monday, June 24, 2019 8:44 AM
Joined: 12/7/2017
Posts: 47


As a professional pilot, this Alzheimer's life I am living is like being in a perpetual "Holding Pattern". Just spinning circles in the sky and waiting for improvement and the weather to clear somewhere and sometime. Six years of care taking at home and  placed her in a M/C facility eight months ago. Yes, she is not living with me and the 24/7 stress is lessened but she is still with me 24/7 and M/C presents its own issues and your life does not change all that much. Not sure I will reclaim life as I used to know it when released from the holding pattern. Blessings to all you care takers.
Kaswife
Posted: Monday, June 24, 2019 8:51 AM
Joined: 6/15/2016
Posts: 51


I relate to a lot said here.  I have zero help or support at home and we’re three years past diagnosis.  It’s soul crushing to see him fading away and living a smaller and smaller life. 

I would never understand how this feels if I hadn’t lived it.  I love my husband but he’s going where I can’t go.  This is a lonely life. We are married 41 years and I’m with him to the end but trying to redefine “normal”.  

Thank you all for sharing the reality of your experiences.  It’s painful to look ahead.  Today is enough to deal with. Who could see this coming?  The emotional drain catches me by surprise sometimes.


Lorita
Posted: Monday, June 24, 2019 9:05 AM
Joined: 12/18/2011
Posts: 10636


Hi,

 I know the rigors of caregiving because I went through them for 7-8 years.  I realize that my caregiving years were much easier than most.  Up until two weeks before he left me, Charles was ambulatory, could feed himself, dress himself but did need help with other things.  He enjoyed going to town and walking around in  the stores.  He even used the electric carts in the stores until a month or so before.  He never ran into anyone or into any of the displays.  We  had conversations and watched TV together.  Sometimes I didn't fully understand what he said but after being together 44 years I had a good idea of what he was saying.  We enjoyed being together.

 Then, in two weeks he was gone, another victim of dementia and aspiration pneumonia.  Now, the house is lonely and empty except for my dogs and cats.  I do the same things each day - if I want to - or I let them go until tomorrow - if I want to.  I watch TV and talk to it.  I play with the dogs and cats and talk to them. I walk among the cattle and talk with them.  All of this makes me feel better because Charles and I did the same thing when he was here.  I've become somewhat of a recluse although I do enjoy talking to my friends on the phone and to visit with them when one does drop by.  I go into town very infrequently and probably wouldn't go that often if I didn't have to get feed for the cattle.  I have most things delivered such as dog and cat food and heavier items for myself.  I don't enjoy going to town by myself and probably never would go if it wasn't necessary. 

 I realize everyone is different and most do have a good life after their caregiving years.  They're able to move on and find another person to be with.  I'm happy for them but that's not for me.  I found the one love of my life and have no desire to try to look for another.  I once told my sister, after our parents passed away, that one day she and I would sit on this hill and live out our lives.  But, that was not to be, she developed alzheimers and is in a MCC 150 miles away.  So, I sit on this hill with the cats, dogs and cattle.  I'm not unhappy because I guess I've reconciled myself to the fact that this is the way my life will be.  For some reason, and I have no reason why, I'm in a rather gloomy mood this morning.  The day will get better and my mood will change. 

 I just wanted to tell you all that if you're still caregiving, you have with you the person with whom you wanted to spend the rest of your life.  Enjoy each moment you have with them, try to be patient with them - you're their security blanket, the one person they have they can depend on and give them love.  I did that to the best of my ability but I'm sure I failed in many ways.  I wish I had it to do over again - there would be things I'd do differently. 

 I do not want to come across as preachy - just wanted to share what our lives can become after caregiving.  Tomorrow or later today will be better for me.  Just in an odd mood right now.  Caregiving life is hard but many of us the years after are also hard - just in a different way.


Dreamer Lost
Posted: Monday, June 24, 2019 10:50 AM
Joined: 3/7/2019
Posts: 236


Limbo - a place or state of confinement or imprisonment; an intermediary, transitional, or midway place; This is a good definition of my life. 

 

Doityourselfer
Posted: Monday, June 24, 2019 2:26 PM
Joined: 9/5/2017
Posts: 325


Perfect definition for my life!  I don't like being stuck in limbo.
McCott
Posted: Monday, June 24, 2019 11:11 PM
Joined: 8/22/2017
Posts: 360


Dreamer Lost wrote:
Limbo - a place or state of confinement or imprisonment; an intermediary, transitional, or midway place; This is a good definition of my life. 
 
 

 In Dante's <Divine Comedy> and in traditional Catholic theology, Limbo was the first circle of Hell, where virtuous pagans (Virgil, Plato etc) and unbaptized babies were confined for all eternity.  They experienced "sorrow without torments" -- sorrow at not being in Heaven, but none of the brutal punishments of the rest of Hell.  There was No Exit, no way out -- they were in the best place in Hell, but still, they were in Hell.

We are in our own kind of Limbo, and I identify with everything those of you still in that crazy-making place have said above.  Some of us will have a life after ALZ, but for many if not most of us it will define the rest of our existence, and some of us will in fact die before their spouse -- this to me is the worst of possible fates. But the universe is random and spares no thought for any of us -- we are just road kill, collateral damage to a disease process that isn't even understood -- a fact that remains as annoying as it is difficult to comprehend.  But the brain, I guess, is still the last frontier.  

When I have really bad days, I tell myself that I'm not in prison, not being tortured, not homeless, not a refugee, etc.  I try to think of the things I still have, but like the sad pagans in the  First Circle, it doesn't usually help much.  

PS: The Church recently announced that unbaptized babies probably can go to heaven, but I don't know what they've decided about the pagans. There is that nasty N.T. verse: "He who believes and is baptized will be saved."

 

 

 


Mrs. O
Posted: Tuesday, June 25, 2019 1:01 AM
Joined: 8/1/2017
Posts: 288


I feel everything that all of you do.  Like life is so reduced now- to just getting through the day calmly and peacefully.  It makes me wonder... What’s life all about anyway?  What if the “Hokey Pokey” really is “what it’s all about?”
Beyond Sad
Posted: Thursday, June 27, 2019 5:49 AM
Joined: 4/1/2019
Posts: 40


I know how you feel.  I feel like my life has been "put on hold" ... for how long, who knows?  I look at my DH and there is just not that person that I fell in love with 41 years ago.  There is a stranger in his body who acts nothing like the person I loved for so many years.  I still love that person and I will continue to love and care for him, even though I don't think he has the ability to appreciate it one bit.  I know it's not his fault.  It is the disease, but it is a cruel joke that we spend out whole lives working hard so we can enjoy our retirement, only to get there and have this happen.  I basically just survive each day hoping that he will not pick on me as much as yesterday, not yell at me as much as yesterday, not say all the mean things he did yesterday.  But today is often just a repeat of yesterday.  If I did not have my two cats who give me unconditional love, there would be no joy in my life at all.  I am all alone in caring for him and, yes, family and friends care, but they don't live this hell every day and until you do, you can't truly understand.  We are all here for each other and just writing our feelings down is therapy of a sort.  I hope it helps that many of us understand exactly how you feel.
Crushed
Posted: Thursday, June 27, 2019 6:47 AM
Joined: 2/2/2014
Posts: 4620


You are all heroes, every single one of you. 
Fischie7
Posted: Thursday, June 27, 2019 12:40 PM
Joined: 7/27/2016
Posts: 178


DH is now early stage 6...incontinent, needs direction showering, picking out clothes etc.  No coversation in the evenings just the same questions repeated over and over...I've even started NO Question Zones where I ask him to give me 15 minutes of NO questions...Yes life is much more boring than before when we had a relationship as partners socializing, entertaining, travelling, discussing so many things...but I have gone from the early days after diagnosis of maybe I couldn't continue to live to finding things I like to do and doing them...so I continue to work full time(we need the money I can't afford to retire, I take French lessons because I am determined to go to France for the first time after he is placed or gone, I adopted a new kitten, I look for and dream of the day when I can sell this home that we loved and move to a condo maybe in a 55 and over community, I still daydream...and I'm determined to survive this.
abc123
Posted: Thursday, June 27, 2019 7:17 PM
Joined: 6/12/2016
Posts: 484


Dear Story,

I know how that feels. I’m sorry that this is happening to you.


storycrafter`
Posted: Thursday, June 27, 2019 10:16 PM
Joined: 12/17/2014
Posts: 1093


Thank you for your caring responses. Coping with everything in this situation is so isolating and there's great comfort in being heard in cyberspace, knowing others are out there who understand. You are deeply appreciated.
Stunned805
Posted: Thursday, June 27, 2019 10:50 PM
Joined: 9/8/2018
Posts: 145


I have been through almost all of  everything all of you have written. I have lost my voice so much that everyone at work knows why. I have written on a notepad in big letters: NO MORE TALKING! because every comment is a question and he will not accept silence as an answer. I have been through this with my mother 11 years ago, so know it is going to get so much worse. I'm terrified.
LMMbc1
Posted: Friday, June 28, 2019 8:48 PM
Joined: 3/20/2019
Posts: 20


I agree that the caregiver loses touch with reality when you're around the dementia patient 24/7. This was a totally new revelation to me.   Sometimes I feel like I don't know how to act normal anymore or have relationships with friends like I used to have.  My DH is non-conversational around me but with others he is so outgoing, it's impossible for them to understand what life is truly like for me.  Very unemotional and self-absorbed.  I just want to scream at times.  I have been doing everything, as for  keeping a household running, for the last 3 yrs.  Last October we sold our house and moved into a condo.  I did all the packing, disposing of items, and arrangements for the move and remodeling of the condo.  I could have had the walls painted purple and he wouldn't have cared or even noticed.  The last 6 months I've had to pick out his clothes and help him get dressed.  He's less interested in showering (once a wk now) and before he was so particular about his hygiene.  He wears depends all the time although rarely has accidents, but because of residual effects of strokes, etc he goes very slowly with a walker, so can't always make it to the bathroom on time.  I hate taking him out because he stares at people and gives dirty looks if a child is noisy or someone's laughing loudly.  His inhibitions with speech are gone and sometimes says very embarrassing things to complete strangers.  So it's a relief when he spends his time watching TV and napping off and on all day.  It's so depressing being around him, and yet I feel guilty when I do things without him. And I know it will only get worse.  I do find solace  working for  2 days a week 6 hrs each day.  He stays by himself and I do worry about him but we have a medic alert system which gives some peace of mind.  I also find comfort in talking to my pastor.  I find it's hard to share with friends and I really  don't understand why, although they all are aware of the situation.

,  


Rennbird
Posted: Sunday, June 30, 2019 11:36 AM
Joined: 2/23/2017
Posts: 48


You describe this new reality so well.  I keep thinking there is something wrong with me that I feel this way.  I am just putting in my time.
Mamie1015
Posted: Monday, July 1, 2019 8:46 PM
Joined: 7/1/2019
Posts: 1


Storycrafter, you have done an excellent job of describing the life of the caregiver,  It is a dark tunnel with no light at the end; just descending one slow step at a time.  The worse part is the hopelessness.  Knowing it will never get better, only worse.

DH is stage 6 or so.  I often feel out of touch with reality, though we have some connection with the "real" world through nearby family members and our church.  I had to quit my part-time job, and we had to sell our home and move; actually, I had to sell our home and move to a new area near family.  As others have said, I made all the decisions, made all the arrangements, packing, unpacking, finding new place to live, etc.  DH can't even choose which shirt he wants to wear, or select an item from a restaurant menu.  

Fischie7, you are an inspiration to me!  I am also determined to survive this!  I have only one child, and DH's children have nothing to do with him.  I cannot die first and leave my child the burden of caring for stepfather with AD.  Fortunately, my health is excellent.  But you, Fischie7, have spurred me to take some on line courses.  I love taking classes, but cannot leave DH alone.  He panics whenever I am out of his sight.  I can continue to study by taking courses on line, and even though it might be difficult, I am determined to do it.  I may be in a hard place right now, but I am still living.  


Jo2
Posted: Sunday, August 25, 2019 10:07 PM
Joined: 8/25/2019
Posts: 1


All of the replies to Storyteller have resonated with me. My DH has Alz and is probably mid-to-later stages. He's been on Aricept and Namenda (11 years, 4 years) and I was wondering any thoughts about discontinuing the meds? I'm at a loss. His neuro said his behavior might get worse (it's been a real challenge). My DH is having more panic attacks at night and has told me he's stuck, unhappy, has no life, wants to 'end' it.. (there's no way he is capable of doing so). The decline seems to be happening all the time. He's on anti-anxiety meds, meds for depression..
By the sea
Posted: Sunday, August 25, 2019 11:47 PM
Joined: 8/2/2019
Posts: 6


In response to Jo2, my husband was on aricept until recently. His getting up at night caused him to insist on taking another pill when he put his pajamas back on, to the point that he would search the house for them. His doctor said that the pills weren’t working for him anymore, and to stop them. Strangely, once he stopped for a few days, he’s never asked for them again. The odd thing is, since stopping them, he has more words. He hardly spoke, only one or two words, and usually just stared at me and not answered. Now he’s speaking in sentences. They are short, but they are still sentences. Instead of saying just “no”, he’ll say “no, I don’t want any” Although he still doesn’t carry on a conversation, it’s still better than nothing. I really haven’t noticed any other changes. He’s on a decline, but that had started before taking him off the pills.
Mrs. O
Posted: Monday, August 26, 2019 1:38 AM
Joined: 8/1/2017
Posts: 288


We took my DH off of Namenda because of his severe constipation (too many meds). The only result was increased agitation and meanness, so we resumed it, and he’s back to where he was before. Constipation is now managed with daily doses of  Miralax.
lvcatlvr
Posted: Monday, August 26, 2019 1:04 PM
Joined: 5/7/2018
Posts: 113


From all the replies to this post, it is obvious we all feel the same way. It's normal to feel resentment for the things we miss and for the work we all have to do for our LO. None of us expected this to become a part of our lives when we started our life journey together with our LO. I remember reading The Notebook and thinking how sad it was, never realizing this was my future.Of course, I wasn't in the situation they were in where they could afford to live in a wonderful assisted living facility. I won't be able to put my DH in one, so it will be up to me to care for him until the end. I have a few friends still that I can meet with once in a great while. My DH has two loyal friends who come to take him hiking. Sometimes we really have to prod him to go.All of our other friends have deserted us. I don't blame them. Being around someone with dementia makes people uncomfortable. I am starting a two day part time teaching job this week, so that will be some escape for me. I just hope my DH will be okay because this job lasts until December. I can't just quit it.I feel like I live with a ghost. There is very little conversation between us, and I now do everything.Intimacy is also gone. I think most of the time he really doesn't know I am the woman he has loved for 48 years.
 
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