VENT: before I lose it

LadyTexan

I have learned not to blow up at DH, no matter how upset I am. I am especially anxious and edgy right now. I want to scream. This is what would likely come out of my mouth, directed at DH, if I weren't penning this post right now.

• I want you to listen to me without interrupting me. 
• I want you to let me talk without arguing with me.
• You want me to go away? I would love to go away. I will be back next week.
• I shouldn't be so angry? I am entitled to get angry. People get angry.
• All I do ALL DAY LONG is feed you, clean you, clean up after you, cook, clean, manage the finances, arrange your care, manage your meds, maintain the cars, feed the animals, try to keep money in the bank, light your cigarettes, wipe your butt and try not to sob because our life is so messed up.
• I haven't had time to eat today. Please give me a break for an hour.
• Yes, I am tired because I have several panic attacks during the night while you are snoring like a freight train.
• No. I don't want to go to bed at 4 in the afternoon.
• Please be considerate of me.
• When does it get to be about me?
• When do we get to do what I want?

DH has already sensed my anxiety. Slamming the door was the give away.

I am in for a pouty day or two. At least I didn't escalate things by saying any (or all) of the things above. Instead, I took a shower. Washed my hair. I am drinking cucumber water. My loyal companion Hap, is by my side. I hate this disease. 

Thank you for allowing me to vent on this forum. Venting here keeps me from losing it in real life.

Buggsroo

Hi Lady T,

I could have written this.

Today I took the wagon to go grocery shopping with the husband. A gent on a bike kept telling my husband how lucky he was to have a strong wife like me. The wagon was full of cases of diet ginger ale because he does not drink anything else except chocolate milk. It weighed a lot, he just ambled along, watching me struggle. 

He has no empathy whatsoever. Sadly as I brought it in the house, it ripped the cat litter bag, huge mess. I yelled: ‘I hate my life, I want out’. So long story short, I have way less patience than you. I often lose it and then I feel awful.

I often tell my mother that I must have really did something really bad in a past life to merit this. We both laugh ruefully. Hang in there.

abc123

Hey Friend! I’m currently in Richardson (North Dallas). If I were wealthy, I’d rent a helicopter and pick you and Hap up for a day of fun and relaxation! We’d take Hap to a Doggie Salon for a shampoo and doggie massage while we would get a manicure/pedicure and full body massage! Then we’d take Hap to visit my friend(a vet) at The Humane Society of San Antonio. You and Hap would both like Doc. Then I’d bring y’all home just in time to tuck in DH. That’s what I’d do if I could! 

Hope this brings a smile to you! You are well loved. I hope tomorrow is a better day for you both. Hug Hap for me. I had to leave my boys (Hank & Loki) at home with a house sitter. I miss em both like crazy. 

Bhopper

Amen! Sister maybe it’s the Texas heat but I have had 2 in a row that you just wrote for me!

After speaking with my son and closest family that is actually involved I finally admitted to someone outside this group I am completely out of gas overwhelmed and realized I have gotten to the point where the24 hour cate I can’t provide as it’s needed so we are transitioning in the next 2 weeks found a wonderful facility that will take everything we have saved but it’s time that I admit she needs more than I can provide. I can’t be 5 minutes away when home when I try and work she has started abusing caregiver because she says I lied to her and not working.

I live for the hours she sleeps and the 2 hours before we wake in the morning because it’s just the same as 40 years ago but once she wakes it’s starts and does not stop until she sleeps again.

Sorry I turned it in to me but I certainly understand and from the outside not knowing all you have done a fabulous job surviving and caregiver. Please don’t kill your self he would not want that for you!

BH 

Mint

(((Dear Lady Texan))),  understand.   Would like to ask my mom to be considerate of me also.  Like you it would not help.  The ability to do that is gone.

Doityourselfer

Lady Texan, I hope you have a better day.

Bhopper, my favorite part of the day is when my husband is asleep.

amicrazytoo

OMG! LT - Thank for putting into words my exact sentiments. I took DH to the store for cigarettes yesterday afternoon. He bought a carton with my credit card, cause his is maxed out from buying cigarettes in the past month. He smoked a full pack in two hours when we returned home. I know some folks would say, just don't buy him cigarettes. But, I say why add to the grief, they haven't killed him yet, why spend your time arguing. In the past two months he has increased his smoking to 5 packs a day. Economically we can not keep this up, it's $100 a carton, that's $50 per day up in smoke. I hid the carton and told him he was allowed 2 packs per day. If he smoked them all in the morning, he would have to wait until tomorrow for the next 2 packs. I say this as if he can follow the logic, of course he can't. It does make me feel I'm at least trying....

Buggsroo - I have had the same question in my mind. What did I do in the past for karma to comeback and kick me this hard?

I pray we all survive.

LadyTexan

Thanks everyone. My attitude is better today which is a good start. Thanks to all of you, I bit my tongue with the exception of  

• I want you to listen to me without interrupting me. 

@abc123 - I imagined in my mind, flying in a helicopter over the beautiful State of Texas and enjoying a day of pampering and fun with animals. It was a great boost. It put me in a happy place that I hadn't anticipated. THANK YOU for getting me out of my frustrating day. Side note - I lived in Dallas from 2000-2003. I worked at UT Southwestern. I adopted my prior dog from the animal shelter in Wiley.

@amicrazytoo - the cigarettes and smoking are a giant challenge here. DH told me yesterday that he wanted to stop smoking. He has since forgotten he wants to get on the patch. Smoking is so ingrained in his memory. He will light a cigarette or I will do it for him. He might take one puff, then throw it in the ash can. So yep, we go through a lot of expensive smokes also. A carton is now around $80 and we go through a carton a week. It is a cost we cannot afford but the arguing and anxiety and general pissy-ness of him not smoking sounds like a hellish encounter that I would prefer to avoid. I often play out the smoking risk in my mind - health wise, not smoking is a good choice. Since DH has a terminal disease, its not on my priority list. Do I want to enhance his longevity just so he can languish in Stage 7 longer? No I do not. I love my husband. My wish for him, which I am sure will be distasteful and appalling for many. is that he leaves this earth, before Stage 7. Alas, that is not something I can control.

Thanks again everyone. Yesterday was a real pressure cooker, not caused by any particular event. It was the drudgery of the endless demands that caregivers endure.

Best wishes to all for a better day for all of us.

Rescue mom

I have cried too many times in the shower asking what did I do to deserve this. Empathy,consideration, and interest in my condition are long gone. I have accepted (mostly) they are gone for good. When will I get to do something for fun, for me, for maybe more than 10-15 minutes? Then I feel guilty.

. Some people say to imagine how bad he must feel. Not much help, by all signals, he is happy as a clam, except for the rare, and brief times I am not totally focused on him, like talking with a neighbor or a quick grocery run.

I still wonder why we are dealt this card. Is it random cruelty, or some judgement for past life?

The animals are my saviors.

Ed1937

I know some of us feel like the tops of our heads are going to blow off, even though we might not have a headache. We often ask "How much more can we take?" I sometimes feel that way, and I have it comparatively easy. I pray for all of us.

60 falcon

Lady Texan, regarding the smoking issue, I can relate with you on that... With a bit of a twist.  My wife and I both smoke.  I smoke more now mostly because I'm constantly stressed.  DW also talks about quitting, but as long as I continue to smoke there's not much hope of her quitting.  She can't light them, she holds them the wrong way, she plays with them and gets burned, she sometimes goes to put the lit end in her mouth.  I have to really watch her.  We've never smoked in the house... That would be a disaster now.

I'd really like to quit but I've smoked a long time and it's my only vice.  I think DW is at a point that she'd give them up fairly easy... If I did too.  It's definitely expensive.  I sure wish I'd never started smoking back when I was a dumb kid. Now I'm a dumb adult that still smokes.

LadyTexan

60 falcon wrote:

Lady Texan, regarding the smoking issue, I can relate with you on that... With a bit of a twist.  My wife and I both smoke.  I smoke more now mostly because I'm constantly stressed.  DW also talks about quitting, but as long as I continue to smoke there's not much hope of her quitting.  She can't light them, she holds them the wrong way, she plays with them and gets burned, she sometimes goes to put the lit end in her mouth.  I have to really watch her.  We've never smoked in the house... That would be a disaster now.

I'd really like to quit but I've smoked a long time and it's my only vice.  I think DW is at a point that she'd give them up fairly easy... If I did too.  It's definitely expensive.  I sure wish I'd never started smoking back when I was a dumb kid. Now I'm a dumb adult that still smokes.

LadyTexan response:

DH and I met when we were teenagers in Galveston. We were both smoking at the time. Fast forward 23 years to when we reconnected: DH was a heavier smoker and I was a sometimes smoker. Shortly after that I quit smoking entirely. Then in 2016, dementia symptoms started creeping into our lives and causing havoc. I returned to the cigs due to the stress. I am a daily smoker but consider myself a lite-smoker at about 1/2 pack per day. I regret starting as a kid and restarting as an adult. Quitting is not on my radar right now. We do not smoke in the house. I wish neither of us smoked. The cigarettes are expensive. Additionally, we pay an additional monthly premium on our health insurance because we smoke. I am convinced that nothing good comes of smoking, unless you are a shareholder in a tobacco related entity.

June45

LadyTexan wrote:

 I often play out the smoking risk in my mind - health wise, not smoking is a good choice. Since DH has a terminal disease, its not on my priority list. Do I want to enhance his longevity just so he can languish in Stage 7 longer? No I do not. I love my husband. My wish for him, which I am sure will be distasteful and appalling for many. is that he leaves this earth, before Stage 7. Alas, that is not something I can control.

LT, that is not appalling to me at all.  I took my husband off his statin drug a couple of months ago. My husband is on the cusp of stage 7 and like you, I don't want to "enhance his longevity".  In addition, putting his constant needs first for the last several years is destroying my health.

P.S.  If you look at the FAST scale, it is scary to see how many years stage 7 can last.

jfkoc

I suggest a little Texas Ranch Water...lol

loveskitties

. Do I want to enhance his longevity just so he can languish in Stage 7 longer? No I do not. I love my husband. My wish for him, which I am sure will be distasteful and appalling for many. is that he leaves this earth, before Stage 7. Alas, that is not something I can control.

Dear LT,

What you wish is not distasteful or appalling to me in the least.  There are times in life when the kindest thing for a loved one is to "move on".  

I have felt the same for my father who pre-dementia was the rock of our family...the go to man with a heart of gold and ability to manage any issue.  I know that he doesn't recognize any of us as family any more, just faces he sees often.  Dementia of any form is a cruel disease for the patient and their loved ones.  How can we not wish them to have no further indignities placed on them?

You do a wonderful job of caring for your DH.  Saying these things "out loud" here, is good for us all...and we know that people will understand.

Hugs

Quilting brings calm

LT…. As a daughter, I can’t comprehend what you feel as a spouse in this situation. That being said, I’d accept my Mom going tomorrow because that is what she wants.  She is moving into stage 5, so nowhere as far along as your spouse. It’s so hard to tell because she has some behaviors of 4,5 and 6.   She is still just cognizant enough to know she is only going to get worse and she watched her mom and MIL have this…. Although she was never involved in their care at all.

This is no life for her, or for anyone involved in her life. 

Rescue mom

What about vaping? But otherwise, heard my mother, in late stage dementia, wish repeatedly and sincerely “why can’t I just go be with the Lord.”  In late 90s she outlived all her friends and family, was bedridden, had no idea of time, who or where she was 95 percent of the time, nor who I am. She had gotten her own DNR earlier, and received only comfort care. She said for years earlier she did not want to live like that. I think she would have suicided if she could have figured out how. Prolonging their longevity…????

Re cigarettes. I wonder about vaping, which would be safer with no flame, no smells, substantially cheaper, and still satisfies that urge for nicotine and to “handle” something. Vapes still must be filled, and battery charged, which many PWDs may not be able to do, but maybe a caregiver could? But would PWD even want to quit, or be able use a different thing??

amicrazytoo

Rescue mom - The vaping was the ticket for me, I was able to quit smoking 6 or so years ago. It was not easy, as DH refused at the time to stop smoking in the house. I have tried many times to get my DH to go to vaping, with no success. I think the newness of it causes confusion. He would need my help refilling and charging, a small price to pay in comparison.  

Buggsroo

The smoking issue is huge, however I agree with the opinions expressed.

My husband doesn’t take his meds, except for the Arricept and the tranquilizer the doctor has prescribed. At first I tried to get him to take them but it was a losing battle. I have realized that sometimes you just have to go with whatever the Alzheimer’s sufferer is willing to do. Sadly he forgets when he has just eaten, he asks where is his dinner, if I let him he would eat ice cream all day. This leads to fecal accidents in bed or not making it to the toilet on time.

I understand the roller coaster of emotions. Sometimes I just make the explosion gesture with my hands saying mind is officially blown. I wish all of you well, thank god I found this site. I am grateful to you all.

DrinaJGB

Oh, my-- I have been right where you are many times over the years. I just have to walk away and go outside with my dogs and throw that darn* frisby until my arms fall off, or start digging in my garden like a maniac. I completely understand.My fantasy is that some nice person will drive up and take me to dinner so I can sit and have a conversation and enjoy a good meal that I haven't had to cook. I get it.

DJnAZ

Thanks, LadyTexan and others on this post for saying exactly what I've been feeling. I know this horrible disease is not her fault, but at times my wife absolutely drives me crazy. And although I'm relatively new at this, those times are becoming more frequent.

So I'm curious...how did you manage to stop blowing up? I try my best not to get so frustrated I raise my voice, but after the 10th or 15th time she asks the same question my blood pressure starts increasing and I simply can't answer her again. Walking away doesn't help, she just follows me.

I suppose I will become better at understanding our new world at some point. For now, however, I'm trying to deal with it and concentrate on blaming her gene pool. Her mother and maternal grandmother both died of AD and their legacy was passing this disease on to her.   

I'm very happy I found this forum and now have a place, as you said, to vent and hear from others who share this terrible situation.

LadyTexan

DJnAZ wrote:

So I'm curious...how did you manage to stop blowing up? I try my best not to get so frustrated I raise my voice, but after the 10th or 15th time she asks the same question my blood pressure starts increasing and I simply can't answer her again. Walking away doesn't help, she just follows me.

Lady Texan response:

How do I manage to stop from blowing up? 

In this case, I reached out to people that understand (this forum). I used my frustration to write instead of react in anger at DH. Sometimes, I say the serenity prayer. Sometimes, I reflect on the consequences of reacting in anger.

Whichever method I use, it's the same strategy one uses to get to Carnegie Hall: practice. practice. practice.

Additionally, I am motivated because I want to avoid a catastrophic reaction from my DH. A bad reaction from him may include:

• verbal aggression or 
• days of DH pouting and the silent treatment or
• DH goes on a hunger strike and refuses to take meds or
• DH shooting imaginary spears at me based on the look of hate in his eyes.

Like anything else, you learn by doing. And because the consequences of blowing my stack are so incredibly uncomfortable, it was a survival mechanism to learn to:

1. stop. 
2. take a deep breath.
3. not react with anger. 

However, it was not easy and it did not happen overnight. I had to change my thinking by reminding myself that DH's brain is broken. My brain is not broken, so I have a choice of how I respond to DH.

M1

This seems to be my day for it too.....I think having to reisolate is getting to me.  We live in an area where masks have been nonexistent for months--and of course cases are surging, so we're back to extreme caution.  And the farm is a beautiful place to do it...but the lack of respite, the 24/7 caregiving, the lack of intelligent interaction are getting to me.  This forum and talking to my kids on the phone is about it......I'm sick of Andy Griffith, vacuuming, playing hide and seek for kitchen items, overfeeding the pets, what is covid and do I need another shot, where is my (fill in the blank).  Meanwhile the heat and humidity make even escaping to the yard problematic.  I'm sure this too shall pass.....but right now it's hard to put one foot in front of the other.

DrinaJGB

M1--I know exactly what you mean. This covid thing is so isolating and we live in an area that has not taken it seriously, so we are rather stuck in place. Our daughter and granddaughter live only 5 miles away, yet we do not see them much because of all of this covid stuff. Our granddaughter is too young to be vaccinated so it makes me nervous being around her and possibly exposing her. I do not take my DH anywhere other than his appointments with doctors because I am fearful of transmission even tough we are vaccinnated. It is stressful going to the grocery store. Life was isolating before being a 24/7 caregiver, but now even more so. I can really relate to your feelings here as I have felt the same way for what seems like an eternity now.