feeling the chronic stress

M1

Really reacting this week to the grinding, one-sided nature of our interactions.  There is much that needs doing around here, but my energy is zilch.  It takes everything I've got just to keep us in the road.  This morning it was merely taking the dog to the groomer, and I'm already exhausted by the time we get back just listening to the mindless prattle.  The same comments over and over.  Just want to sit and vegetate.  Not have to answer questions for a while.  Not have to find something.  Not have to fix a meal or get a pill.  Or stop a check, or hide the truck keys.

I need to take LT's lessons to heart and be grateful.  But I'm tired!!!

LadyTexan

Good Morning M1.

My week has been exhausting too. Nothing especially challenging going on in our house, just the day to day drudgeries of making meals, cleaning the kitchen, getting DH showered, dressed, administering meds, feeding the cat and dog and remembering to eat too. As soon as I flop down in a chair to rest, DH asks for one more thing.

Interestingly, our home is a little more calm this week because the hemorrhoids are less bothersome for DH. And yet, I feel like I have been run over by a train and I am super tired.

Please give yourself a break and be kind to yourself. Caregiving is so very hard. You are doing a fantastic job caring for your partner! I will be your cheerleader until you have enough energy to pat yourself on the back. 

LadyTexan

Another thing - good for you for listening to you body! Do NOT ignore what it is telling you. Is it possible that a medical check up is in order here? I am not trying to give you another thing to do, but consider checking in with your doc about YOUR health.

Please stay hydrated.

Take care and let us help you.

LorettaP

M1,

What you’ve described sounds exhausting emotionally and physically. I cannot imagine how hard it is for you. I am somewhat new to this site, but have found comfort in all the helpful people who post comments and suggestions. I wish I could give you some helpful advice, but honestly, I’m at a loss for words. I was ignorant regarding the horrific consequences of dealing with Alzheimer’s, and my heart goes out to you and anyone else who has to deal with this disease.

Crushed

After 7 years the stress got to me so badly that all my lab values went crazy and my Doctor said it was time for placement.  So did DW's doctor. So did my therapist, my daughters and  my siblings who had all dealt with mothers dementia.  I also went to three caretaker funerals.  (two younger than me)    Some folks I knew seemed to have a death wish just to prove  they were the world's only person who could take care of their LO.  Well in every case the LO went into care when the caretaker died or was themselves sick, and often into a much worse situation than would have been the result of planning .  

You do what you can do as long as you can do it.  But don't make promises your body and spirit can't keep

Doityourselfer

M1,   Listen to your body and take a nice break today from the household chores.  Hope you get re-energized.

John_inFlorida

I like the way you stated it as one sided. It is tiring taking care of everything. My DW is mild at this point but its been almost 9 years. And I am just tired of doing everything. Even worse when she points out something that I need to do. I think to myself, why dont you just do what ever it is. But thats not going to happen

Rescue mom

M1 I think I know exactly what you mean.The endless responsibility is what exhausts me. (And yes, I’ve had diagnosed gastro and immune system illnesses flare up, one reoccurring and one brand new). 

Knowing anything that gets done—eating, getting food, bathing, gas in car, cleaning up a spill,  paying bills, getting meds, getting DH to shower—anything and everything is up to us caregivers. I think the responsibility and having to plan/schedule every single thing, is as tiring to me as actually doing it.

At least DH doesn’t really “ask” for anything, nor complain about much (except “injuries” anytime he touches something). At this point, I could count that as conversation from him. Other people have no idea. Single moms of babies/toddlers come close, but at least they have progress ahead. Other people  actually ask what I do all day. 

I’m sure DH is “easier” than most; he doesn’t or can’t do *anything*. If he was worse, I could place him. I *could* hire more help, but they’d just be watching DH sit for 95% of the time; and I can’t get the energy to find and train another “errand” person. 

I’m still dealing with anger that my life is essentially over. Under normal, pre-Alzheimer’s conditions, I’d have about 10 good years ahead. Now it looks like I worked all my life to be a...babysitter.

Ok pity party over. I have to do laundry and think about the next feeding.

JoseyWales

Add me to the list of those who are exhausted today!

ButterflyWings

M1 and everyone...yep. Same here. Trying to stay one step ahead, feels like a losing battle. And it is CONSTANT. I, too, was feeling overwhelmed and started mentally noting all the things I have accomplished in the last 2 weeks. It made me straighten my shoulders and lift my chin just a bit.

But still...so much to do and I feel so far behind. I am glad DH is not harder to deal with (he's still fairly capable of most ADLs, and is only beginning some urinary incontinence.) But the most stressful part for me right now is his oppositional, defiant, obstinate, flat out refusal to cooperate with anything I need him to do. So, not only is it 1-sided and me having to carry the weight of two...my other half is pulling in the opposite direction, full speed ahead. Makes it so much harder and infinitely more stressful. Plus, it can make us caregivers feel like a failure, (me anyway) when we really aren't. 

Let's ignore the UTI nightmare of the last 2 weeks with the wastebasket thrown at me as I exited the bathroom, and other fun stuff I never imagined we'd go through. Urinating everywhere too. Almost back to baseline now, but the conversation has gone from "No, I'm not doing that", "shower?...mind your own business", to almost pushing me aside to walk past, to "get out of here", to "tell the Dr. to kiss my @$$", refusing meds, and (to me, his darling wife): "F-you" (loud and clear). I am getting so numb, I almost wonder who I will be when this is all over?  

He has never been so uncooperative this entire journey and yep it's getting me down, right now, and I am truly exhausted. The last 2 days have made me face the first real thought that I might have to consider placement at some point one day. He's healthy enough, but if I can't (cannot) get him to take off the smelly damp 2-day old depends that's under the dry one he put on top yesterday, and keep finding little pills lying around that I "watched him swallow"...makes me realize I just may not be equal to this task, already. Sobering. Sad.

I called Home Instead today, to book an intake interview for a 1-day, 4 hour helper at $30.50/hour. That's all I can budget right now. Adding that person may or may not help, as it will be 1 more thing for DH to fight me on, on top of me handling all the million other things you all mentioned just to keep us going. Yes, we caregivers all are doing a really huge job here. I hope your weekend stays calm at least. Don't give up on yourselves. We can't.

Joe C.

I hear you about having no energy. I had mulch delivered two weeks ago and have not finished spreading it yet and a hummingbird feeder I pick up on Monday which I have not hung yet. After getting DW up, making her breakfast, medications, cleaned up & dressed half of the day is over and I’m spent. Last night I washed the floors at 9 PM after DW was asleep, otherwise she would just pace around on the wet floors. If I try to go out and do yard she will follow me and just wander off when I’m not looking. Maybe putting this in writing will be the kick in the butt I need to get these task done.

Jeff86

I am sorry, M1, that the cumulative pressures of caregiving are wearing you down just now.

PWDs’ needs are so relentless.  They never diminish.  They grow, they change, they shift shapes.  Interactions are, indeed, one sided.  A nontrivial amount of the time my DW’s utterances are impossible to understand or interpret.  Other times, there’s mind-numbing repetition, challenging my ability to treat each comment or question as if it were the first time it was said.

No surprise you’re tired—those endless demands.  Think of it like the Colonial Pipeline....you are out of gas at the moment.  But there are rhythms or cycles to our reactions to our caregiving burdens, and hopefully soon there’ll be a turn and you’ll feel more energetic and more capable of coping.

We all understand what you’re going through, and we support you!

M1

Went to bed before 7pm, reading your responses with gratitude. Helps always to know others feel it too. Couldn't do this without this forum to lean on.  And yes, LT, I'm due to go in for a checkup- just got Medicare so no more $5000 deductible!! I am going to call. Love my PCP but docs are not great patients....me included. Hard to ask for help and I don't want to break down in his office, fearful I might. But some discussion is needed.   Don't think I'm depressed, but don't want to get there either.

Hang in everyone. Thanks for being there....

sandwichone123

I'm much newer at this than many of  you, and my dh is still functioning relatively well. But yet...not only is everything repetitive, it's also childish. It's never "cold," it's "chilly-willy." Ten thousand times a day. I almost look forward to the desperate heat of summer just to stop hearing whether it's "chilly-willy."

I took the hummingbird feeder down to refill about two weeks ago and still haven't gotten it up again. There are four adults living in my household. I'm the only one working FT--my son works half time and the person who used to be my daughter isn't working. I'm tired, and my classes start Monday.

[Deleted User]

The user and all related content has been deleted.

Mint

M1 sorry you are having them days.  You are right you need to talk with your physician.  You have  received some  good thoughts here. Take care of yourself.  Ok if you break down at the doctors office, it is not a sign of weakness.  It is a sign of the road you are traveling.  May be time for you to put your oxygen mask on.  Your thoughts here are always appreciated.

Ed1937

M1, I'm sorry it is so hard. It sounds like you really need respite, and I hope you can find some. Hopefully today you will feel a little better.

beeps123

My dh is 90 and was diagnosed with dementia a month ago, but had symptom for a long time.  I have just gotten aides 2 times a week because I had to have a break.

tcrosse

I don't mind so much doing the cooking and cleaning, but DW insists on "helping". The less competent she becomes, the more obstinate she gets.

jfkoc

A story to share. It was the Sunday morning after the 50 year reunion. Some one asked where Susan was.  He cousin replied that she had already left and to tell others she had "run out of  nice".....

Sometimes nice is on empty and you just want to yell "shut up". 

LadyTexan

Hello M1.

I am very glad to hear you are going to see the doc. 

BTW - if you cry in your doc's office, it is NO BIG DEAL. While there may be "no crying in baseball" (according to Tom Hanks in the movie A League of Their Own), there is plenty to cry about when a loved one has a dementia related disease. This long, exhausting and uncertain journey has so many heartbreaking and soul crushing moments. I can't imagine what kind of human travels this hard road without shedding many a tear.

Thank you for making YOUR health a priority.

anneleigh

Yes add me to exhausted list today as well..........so many things to do and not enough time.  Trying to get things done and make sure DH does not escape down the street for a walk on his own.  I look forward to 7:30 PM in evening every night when he goes to bed for my alone time.

Paris20

I am another member of the caregivers’ exhaustion group. After winding up in the hospital two months ago, I finally listened to family and friends who had told me to get help for caring for my husband. We were very fortunate that an experienced caregiver was available. The problem I have now is that my husband thinks he is fine and will not let the caregiver do anything for him. He becomes very irate and I fear the caregiver will quit. She cooks and does laundry, some light housekeeping and I take care of DH 24/7, as always. 

I still want to keep the caregiver because she has freed me from many responsibilities, but I need a break from DH’s incessant repetition, the sundowning, shadowing, vile language, etc. I speak to a counselor once a week via Zoom but my husband walks in on me, regardless of where I try to hide. He resents my meeting with a therapist but I continue nonetheless. I feel trapped by a man I no longer recognize. I’m worn out.

riajean

Dear Friends, I don't understand why more of us don't opt for placement?  Seven years into this, working full time (my own business with lots and lots of responsibilities), caring for my husband, paying for a home health person only 6 hours' a day when I try to fit everything in.  Can't leave my DH alone for too long or he gets upset and angry, depressed and says he wants to die.  Always a lovely conversation that gets nowhere.

I'm tired.  Every morning he won't get up unless I do even if it's 5:30 or 6:30 or some other time and I don't have to get up.  Even if he's restless, sitting up in bed, stroking his hair, scratching his legs, lying back down and pulling the covers so tight I choke.  He'll get up, turn on the light, try to make the bed with me still in it.  Frustrating and maddening knowing I was up half the night with anxiety, pounding heart, talking myself down.

I've put a deposit on a specialty Alzheimer's unit; lovely interiors and grounds, very helpful staff, but can't bring myself to place him.  HE STILL KNOWS WHO I AM, and to me, that is the crux.  Though he can do nothing for himself, though he showers and pees without me, there have been many mishaps and lots of confusion, like when he came out of the powder room, pants off, telling me he had a problem, showing me a soaking pant leg.  I almost couldn't bear to go into the bath to see what happened.  Luckily he had flushed but for some reason removed his pants and when picking them up for some reason, dunked them in the toilet.  There was water all over the floor.  Upset, I faked "it's alright", taking his jeans from him, removing the belt and getting him fresh pants.  This is NOT THE MAN I married.

Recently my mom came to visit - after 2 years - coming into the kitchen she said, "you're so busy in here".  "Yes mom", I said, "making my DH coffee, feeding the cat, making breakfast for my DH, making coffee for me, maybe breakfast for me, emptying dishwasher, cleaning up anything left from the night before, etc., etc.  Oh yeah, and I work full time (can get out of the house for 6 hours/day) and need to make my lunch, make sure I have something to drink, get meds out for DH, and vitamins/prescripts for me ---- me?  Oh ... right.  I count too.  I wanted to laugh out loud, but didn't.

Yes, we need and must think of ourselves.  Recently, I went to my PCP twice.  Once I was given an antihistamine to help relax me at night.  I already take a 12-hour allergy pill as I'm allergic to everything and didn't want to take more.  So, I went back, telling her I was fragile, depressed and anxious waking with both a pounding heart and racing heart.  She prescribed something I have yet to take and something for panic attacks which is sitting in the med chest.  I don't want to have to take meds to live my live and yet, here we are.

I'm thinking my DH needs to be elsewhere and I need to be free to live my life, even though it will mean at least weekly trips an hour plus away from home.  I'm not ready to die.  Don't want to be sick; don't feel like I should surrender my life at this point.  I love him dearly.  We met 49 years ago as kids.  I know everything about this man, but now?  I'm so torn, mostly lonely, can't do anything with him, take him anywhere.  His visual/spatial decline is crazy stupid, practically making him a blind man.  Can't read.  Can't write.  Can't understand language. 

I think there's just a point where professionals must take the reins.  I'm not divorcing him.  Wouldn't think of it.  Not leaving him.  But both he and I deserve a quality of life - his is ending and I've accepted it, but mine is still going strong and there are many, many people, both in my business and in my life, counting on me to be here for a bit longer.  I think it's just the way it should be.  Talking myself into it for my sake, for his sake, so I can be around for my kids.

White Crane

Dear M1, I understand your stress and fatigue.  This disease is mind numbing and can wear down the strongest caregiver.  The mindless prattle as you so aptly called it and endless repetitive questions sometimes bring me to the point of tears.  I long for some meaningful conversation but that is long past.  M1, from your posts I know you to be a loving and caring caregiver.  It's hard but you are doing a good job and I hope you can get some rest...both physical and mental.  Please take good care of yourself.

Bhopper

Please don't stop posting you feeling you just described many of my days and I sure several others. I have not had the time or energy to get on this site that I know is a huge benefit for me as well as others. So again please if nothing else know your getting through it helped me today & boy did I need it!

Thank You

M1

Made that doctor's appointment this morning, for Thursday.  Need to take her, too, but this time I'm going by myself and I have good excuses for doing so.

I'm reading all these posts, and obviously a lot of us are in the same boat.  But I hardly know what help to ask for.  She doesn't need ADL help yet, so I don't think an aide is in order; and she loves to dust and vacuum, so we don't need that so much.  I don't think she would accept a "sitter"--she wouldn't ask them to do all the stuff she asks me to do (like where are the forks, the trash bags, the drinking glasses; how do I turn on MSNBC, what channel is Andy Griffith on; why are there text messages on my cell phone).  I think a lot of us who are sole caregivers are just stuck in this role.  No one can provide the "scaffolding" that we do.  And most of the time, we do it gladly; but it is so wearing.

What I don't get is prolonged time to myself--would love to go spend the night with my daughter/SIL and grandkids, for instance, or even take a short trip with them.  She would not acknowledge that she needs someone with her overnight.  And living in the country like we do, there are not day programs readily available--nor would she be a willing participant, that was never her thing.  If I could find one that masqueraded as a watercolor painting class or an animal rescue program, I might get her to go--but I doubt those exist around here.  What I really need is farm help that she thinks SHE should hire, because it's her property and her farm, and this has always been her bailiwick.  Every time I mention calling someone to fix the gate, mend the fence, fix the tile on the porch, wash the windows (some are 30+ feet off the ground), she'll say "Oh I can do that" or "I bet there's someone cheaper if I just ask around."  But she's incapable of doing that any more--and yet she won't relinquish control and let me take charge of it.  So it ends up just not getting done, and I have to just let it go, realizing that there will be a LOT of repair work that will need to be done after she's gone or is further down the road.  We would have the same dynamic if we tried to sell the farm now:  she would go nuts with letting an estate company organize the cleaning up and auction that would need to happen before sale.  I think it would make her very unhappy, so it will be easier just to stay here and for me to deal with it (and all the associated costs) when she is no longer here to gripe about it.  But meanwhile, if the property is not maintained, it will lose value.  So it's a catch-22.  But she loves this beautiful place that she created, and she's happy here; so I want here to be able to putter and hopefully for us to stay here for the rest of her life.  We'll see.

She went outside this morning saying she was going to work outside all day, but this ends up being like "working" at her desk--she just putters, and that's all she can do.  But it's okay, if she's happy out there.  This is the formerly most OCD neat person in the world--and now the barn and workshop are a shambles, she can't remember to put the tools away, or I find them in odd places, just like in the kitchen.  The physical disorder is reflective of the disorder in her mind, and it makes me so sad.

In the car the other day I tried to have the "what would you think about doing if something happened to me" talk--there was an opening for it--but it fell flat.  She doesn't see how limited she is.  We have all the legal/medical stuff covered, but she is way past the point of being able to live alone, and she just doesn't see it.  All she would admit to is that she would need to find a meal service like Meals on Wheels.  No clue that she would be in MC in short order or would need to hire full-time help.  Our accountant (who is backup financial POA) is coming for lunch next week, and I'm going to tell her the upshot of the discussion.  Backup medical POA is a good friend who is also a doc, and they would have some influence with her, but that's it:  there are no siblings, kids or even nieces and nephews to step up.  My kids would do what they could, but even that would be pretty limited.

Sorry I'm rambling this morning......

Glopark

Let’s face it—for many of us, our lives are over. I’m 71 and my husband is 65. I also have struggled with PTSD from being in OKC bombing. Always planned his staying at home until he could not physically eat but the every day stress of his totally being dependent on me is more than I can take. I no longer care about the house, laundry or anything. There is no joy or laughter left.

caberr

Wow...this is exactly how I have been feeling.  I'm tired of the questions, needing something now, getting breakfast, lunch and dinner, cleaning up the mess he makes but doesn't see, etc.  I'm just plain tired. 

He gets up in the morning usually happy but I just don't have it in me to be happy!   I am grateful he is happy.  And grateful he can still do things for himself (with me usually fixing after) Hoping this is a phase for me and I will "outgrow" it sooner than later.  

Bunny314

Hi: I'm new to these forums but not new to trying to fix what obviously i can't.  My LO is currently in a healthcare setting which is not set up for Memory care.  The exhaustion, frustration, anxiety and sadness are constant. I'm trying to care for myself and have someone I can talk to professionally but I really am trying to find an appropriate support group to be part of.  When I say constant stress, when not dealing directly with the disorder, I thinking about what has to be done practically, Then in my sleep my dreams are obviously reflecting the fear and anxiety we all live with. I then sometimes wake up in a panic over the nightmare I was just having.  I'm not whining but its a hard merry go round to get off.  People keep saying "You have to find something else to do."  I understand that but my focus keeps going back to the elephant who's always in the room.      I'm babbling but I suspect i'm not the first newbie to do that.  The hardest part for me is THERE IS NO RIGHT WAY TO DO THIS, The game and the rules can change from moment to moment and just trying to FIRST DO NO HARM is like being on point all the time.    At the moment i'm trying to not be overwhelmed by the things i'm reading in various forums while trying to find the right ones to fit in.     Thanks in advance. I'm sure you get it.  I'm just reaching out, going through this alone is impossible.  My wife's reality isn't something I can change or should even attempt to. My own I have to find a way to relax and hold on to.

I was suggesting to someone the other day it was like being with someone tripping on LSD but you knew they would be back in a couple of hours, No such luck with this demon.

PEACE

JJAz

I am almost 2 years past the death of my DH.  I am mid 60's and have spent much of the past two years on health issues that were definitely aggravated by the stress of caregiving.  Even though caregivers cannot eliminate stress in their lives, I cannot stress (ha ha) how important it is to try to reduce your stress as much as possible during this journey.  You too will someday have a life to live and you want to be able to enjoy it.

Blessings,

Jamie