For those who don't know me, my husband and I live with my mom who is 91 and has Alzheimer's and a weak heart. I take medication for depression but it still gets a hold of me. We rarely get out together as my mom can't be alone. My brother and sister live far away...brother gives us breaks maybe once or twice a year. Sister doesn't lift a finger. I've been doing this for almost 5 years and making other arrangements is not an option for me. My husband says I'll feel better in the spring. I don't know... Guilt goes along with the depression. If I don't do anything I feel guilty, but I some days don't feel up to doing a thing.
People thought I had my act together all the time but in reality someone said I might have been high functioning and still suffered from depression. It is dangerous. I wished I had recognized that things were escalating beyond my control and I needed to make other choices. Being a martyr or superwoman was not a good idea. My dad passed last year and the grief and depression has been difficult to work through. I keep trying but some days are harder than others.
It started slowly, with some expected losses. Friendships, travel, personal time, romance, etc. As I busied myself with what needed to be done, I stopped looking up and around buried myself with tasks. Mom required more time now. Not that she needs constant care but we don't leave her alone in the house. I work all day, errands on the way home, and switching with the day sitter, home all night. Work.home.work.home.work.
Bye bye freedom.
Even though when I had the choice, I stayed home now that the choice itself was gone.......
Trapped. Begin to freak out.
OK breathe.
Set a goal to turn things around. Make a plan.....
Sister from out of town arrives on a visit with husband.....marital issues boil over..hubby goes home, sister stays for 8 months. Trying to help her with her depression, care for mom, work full time, daily life hurdles and speedbumps......
Wait. Am I still breathing?
Inhale. Exhale.
Falling further and further behind. Sis tries and helps some, but causes more work and stress regardless. Sister going home now, sigh of relief.
Sister #2 comes to stay the very next day, caught in-between homes temporarily. Did I mention my suite is tiny?
2017 begins and so does the sorrow. I am now worn out and sick. Risking TMI, I am so backed up, the pain is excruciating. Days off work. Missed my birthday, but so did everybody else, thanks guys. I start to notice that regardless of how sick/tired I am, everyone around me just carries on with their own lives. Like I am not even there or at best an afterthought????
Sorrow weighs heavy on the heart.....
Everyone now squared themselves away. I am on my own again. Sigh of relief.
Wait. What's this feeling of drowning? Just keep swimming...now I'm sinking. Try harder. Work faster.
The only time I hear from siblings is when they need something...everyone wants more, more, more. No one will make a move, a decision, and all responsibility is mine and mine alone. Cracks become fissures. I shake. Coherent sentences escape me. I'm screaming in my head all the time.
Stop. Breathe.
What do I do?
Ask for help. OK.
Honestly open up. HELP ME. I'M DROWNING.
Yup. I get a deflated life raft sewn together with empty promises.
Anger fuels me. Pull myself up.
Set new goal. Make new plan.
Steel myself for hard work. I shall be victorious!
Nope. With that raw lump of bitterness in my throat, I ask for help again. This time I am very specific. Is there hope?
Sister #1 plans to visit again with the sole purpose of helping me. I lay out my request. I need to complete the dehoarding of mom's place so day to day tasks are manageable. I have 2 weeks of holidays from work. 1 week back and then another off. I require sisters dedication and focus on the task at hand. To be priority #1 until project complete. No side distractions. None. Period.
She agrees. She promises.
I ask sister #2 for help with specific tasks on specific days. Schedule me in please.
I relax a little bit knowing that help is coming. With this project done, a lot of pressure will be gone. I am hopeful.
Bwahahahaahahaha.... .
My so called time off begins. I begin to work. My sister goes to the beach. A church weekend rally adding on an extra day while I watch her dog. WTF??
Returning only to tell me that she is picking up granddaughter to come and stay. WTF?!?!?!
How is that not a distraction.
Sister #2 shows up but leaves soon after due to my attitude.
Wow. I've warned everyone in earshot how stressed I am and I may react badly. Apologies ahead of time. Never got the second days time from her.....
Spent every waking moment of 2 weeks doing the job on my own. This includes moving furniture, sanding and painting, yard work etc.
A team of one.
While my sister keeps promising me that she'll be here as long as I need her....flitting away to go swimming now....I lose it.
The screaming has come back with the shakes. As a special treat, vomiting has now joined the party hand in hand with uncontrollable bouts of crying.
I can't verbalize anymore and am afraid to open my mouth for the profane nastiness that will spew forth.
Returning to work, I ask useless #1 to take care of all the daily chores and I will continue on the project. Make sure to feed me etc. Tasks better suited to her possibly.....
Reality....I spend the week going to work. Return home to do HER chores, mom's stuff, then my stuff, make my own dinner at 2am (not a typo) bed, get up and do it all over again. For a week.
I am going to hit her with this shovel. Swallowing all these emotions to maintain a calm with mom.
Enough is enough. I am leaving for my last week off. Project undone. Whatever. This is a must.
I say I'll be gone and she'll need to be responsible for mom.
Can't. Have to leave.
What? You'll be here as long as I need you and now that I need you....poof. gone.
Crushed. Devastated. Dumfounded. Gobsmacked. Heartbroken.
She had watched me slave, shake, vomit, breakdown, cry, scream, collapse and after caring for her for 8 months in her time of need, after caring for her mother too, this is the support and compassion I am given.
You are not my sister.
#1 cries to #2, who then calls me to say I'm being harsh and need to fix this.
????????????
Do I need to be dead for anyone to care?
Mom takes a turn for the worse. I start to think about her mortality, then my mortality, then my dogs mortality, death, death,death.
If the will splits the house among all, they will want to sell and I'll have no where to go, no friends, no one cares, am I really here...welcome anxiety!
Irrational fears taking over. In my head, all I have cared for these past years is dead and I'm living under a bridge, invisible. I'm scared to death of growing old. If Noone cares for me now what happens when I'm old and infirm?
Sheesh. Anything else?
I'm caught between not wanting to be trapped hereally and not wanting to go out into the world. Limbo.
I'm becoming (become?) someone I don't want to be.
I'm not even a real person anymore, I'm just stress and sadness. It was better when I felt invisible then knowing I'm in plain sight just ignored. This forum, God bless you, is my only confidant.
2017 was an emotional mess. Definitely scarred. Still bitter.
I battle every day between the loss of my life's choices and freedoms, the overwhelming anxiety, my broken heart and the stress that binds it all together. And I'm one of the lucky ones. Mom is still with it, capable of basic self care, happy and appreciative. My situation is heaven compared to the realities of so many others.
Ahhhhh, this is only the tip of the iceberg but I'm going to put my baggage down for awhile....I'll end saying that mom is doing much better now. I'm slowly working through the backlog (paperwork, taxes, blah blah blah). I'm releasing myself from my expectations of others and of myself.
I'm still very bitter and angry and sad. I will need to concentrate on not feeding negativit.
My motto of 2017 was "people suck. I hate people"
My motto for 2018 is "love thyself. Do good. Be kind.
And if you can't be kind, be quiet. (OK, I'm still working on that)...
Breathe.
Hugs to all of you, going through a rough time.
Love to all of you who give all your love to others.
Thanks to all of you for being there.
It's frustrating when the one person closest to the situation is not taken seriously. As if, you are exaggerating or mistaken. I get this all the time. Then when something does happen, it's " I didn't know" "why didn't you say something? " or "why didn't you do something about it?"
Arrgh!
It's been almost 3 years of letting family/friends know of the stresses for me. I keep repeating that no one is hearing me. One of the final straws was a month or so ago, when I was told by sis "maybe you're not saying things in a way that can be heard" and "well, you could always move"
Wow. That's sooooo helpful.
Just this morning, I had to turn down a friend's invitation to a quiet new years eve. He's alone and would make dinner, drinks etc. Very kind.
I explained that mom has a leg infection that is not looking good and I most likely will need to take her to the hospital for iv antibiotics at the very least. His response was "I think you could swing it".
Really? What did you not understand about infection and hospital that makes it OK for me to leave her alone to go drinking?
It all leaves me completely deflated. It's a beautiful sunny day today (rare for no rain) and I can't seem to get out of bed.
I wish you luck. And that your father doesn't hurt himself or worse, someone else. Keep trying to do the right thing. At the end of it all you'll know you did everything you could possibly do. Be at peace with that and shut out the idiots (pardon the negativity) who live in denial and do nothing.
Happy new year. Here's hoping that 2018 wI'll bring unexpected blessings.
I'm in Canada (BC) and we contacted ICBC (our licenxing/insurace) and had them send a letter to mom for retesting. This was after several minor mishaps in the car. When she failed and lost her license, she gave it up freely because it was them and not us saying it. I don't know if you have anyway to do something along the same lines where you are but be sneaky if you have to, it could save a life.
I was wondering about the DMV- that is the Division of Motor Vehicles in the US. I had hoped that the police would have advised me but they didn't. My father did do a test with an occupational therapist at the hospital last spring and did OK but he wasn't drinking then. He has been having more and more mishaps with hitting and breaking the sideview mirrors and the garage door so it has been a regular stream of having to pay for repairs. Even before the alcohol. He is blaming it on his vision, and did see an eye Dr last spring and he was fine with that. He scheduled another appointment with the eye Dr in a couple of weeks but I wouldn't be surprised if he was fine again. In fact case, if he feels that he can't see well anyway, that should be enough justification for him to lose his driving privileges. But as you know, it can be a very difficult subject for some and he would likely become even more difficult if he had to use a taxi. I certainly will not take him out every day- I only go to Dr appointments with him now because of his verbal abuse as well as his unacceptable behavior in public.
A rock and a hard place is not a comfortable place to be. Im so sorry you get verbally abused. That becomes traumatic, at least for me.
The cops showed up at mom's door one day because she hit another car in a parking lot and didn't even know it. Drove off...tra la la lala.
Mom's retest was a driving simulation in front of a big screen. Tested for reaction time, road rule knowledge, seeing pedestrians, different situations and conditions. I think it scared her into handing her license over.
Even if the doctor were to agree with you, would he listen? Or can the doctor recommend lose of license and that's enough to lose it?
I guess than he would have more time to drink at home and get abusive (but less access to alcohol).
Rock and a hard place.....
God grant me the courage....
Hugs.
In my case, my wife developed a leg infection within a day after she was admitted (full time to a care center where she now lives (has for just over 2 months but the leg infection started within 3 days of her being admitted). Thanks, I'm just seeking all info possible.
In my case, my wife developed a leg infection within a day after she was admitted (full time to a care center where she now lives (has for just over 2 months but the leg infection started within 3 days of her being admitted). Thanks, I'm just seeking all info possible.
It turns out (after spending new years eve in emerg) that mom does not have an infection. She has stasis dermatitis from bad circulation , poor blood flow, and zero exercise. The fluids are seeping through her skin and overnight her legs are covered in blisters (not painful-just excess fluid). Upon further research this condition mimics cellulitis, which is what I thought it was. Looks like infection but is not. It started awhile ago but the worst of the symptoms came on overnight. This condition can now result in cellulitis because we have open sores where bacteria (which is everywhere) can enter the body. Mom had some scrapes on her shins from a fall awhile back and with incontinence and lack of hand washing, I was sure something got in there resulting in an infection.
Your question is very reasonable. I think about it every time I've been at the hospital....what am I being exposed to? Now with mom bring there with this condition and open sores, I am extra diligent. Care facilities run the same type of risks I think, maybe I'm a little paranoid, but odds are.....
How is your wife's immune system? Compromised by other illness? Did she or does she have any open wounds, or scratches for bacteria to roost.. skin condition of any kind?
I hope you find the answers you seek. Being in the dark is soooo frustrating. cant fight something you can't name or don't understand.
Good luck.
Also, we went to hospital because I thought we had leg infection. We were not in hospital prior to it.
You should write a book. Seriously! consider it. You might think I’m crazy suggesting that you add such a time consuming project to your already beyond busy life, but I’m pretty certain writing a book would not feel like a burden to you..you’ve a talent to say things in a way that reading them feels like living them!
I am exactly on your same boat minus your sisters, as I’m an only child. I truly feel I’m invisible, like you.
Actually, since I moved here (overseas) to care for my mom, I’ve not had one ounce of help, not even a phone call from any of my four cousins (on mom’s side) or five cousins (dads side). Actually one of them came the day before Christmas, not to invite us to spend Christmas with family (not that we could have gone, but being invited would have felt nice), she came to bring a supermarket cake just to “check the box” and say she remembered us...well, I’ve been here the entire year and not even a phone call...but she brought a supermarket cake for Christmas! Redemption.
She also said “oh! Did you go see all the beautiful nativities displayed? There’s so much to see and do this time of the year...! I should’ve asked you to come! Right? You know what it is? I keep forgetting you’re here!!! Seeeriously!! I never remember you’re here”
Everybody FORGETS I’m here. Just like everyone forgot my mother was here, alone and sick, before I moved here to care for her. No one ever called her to see if she was alive! So what am I expecting? What can I expect? Exactly! that’s what I expect: Nothing.
Yet, for a person to hear and know that you’re truly invisible to people it’s hurtful. Just because you’re devoting your life to help someone to have a bit of a more dignified life themselves..you become invisible! The world considers you nothing. They can criticizethough!! They do judge, but help? No!!! Our situation (caregivers) is so ignored that we really can expect nothing! If we ever get something/ someone’s help, their time or listening ear..feel thankful, just don’t expect it.
And normally that will come from someone that’s not your relative or friend.
And believe me, you should write a book!!!
What a cool compliment, thank you. Wow, I forgot what it felt like to be noted on something that doesn't involve mom. Like I'm actually a real person.
"A Wrinkle in Time: A Caregiver''s Descent into Madness"
Written dear diary style and saying all the things that caregivers don't say aloud.
People have selective attention. They see and hear what they want. If they paid attention to you and your mom's situation (existence? )
Hahaha haha. .....fell asleep and didn't finish the message. Must have hit send by accident. Late for work too today.
Just another day in the life......
Will try to come back and finish the thought later.
And don’t worry because I literally fell sleep as I typed the last few sentences of my previous message. Next day I didn’t know if I had finished my thought and sent it...just part of the madness and tiredness of our life!
If you do write a book please make sure it can be shipped overseas or bought online! ;-)
If I ever had the gumption to write one I'd send you a signed copy promise.
Continuing from where I dozed off.....of others took an interest then heaven forbid, they might have to participate and contribute. Much easier to tell themselves everything is fine when they see nothing. If and when they find out how hard it's been and how hurt you are, then they can whip out the "well, I didn't know" defense.
I am very familiar with the token effort as well. People have offered to help and if I don't have a specific task right then or distractions get in the way, later when I say something, I get attitude with "well, I asked you".
Sigh...
There are days where I am desperate for help and other days where I believe it's better for my sanity that they stay away.
Being invisible is an awful, lonely feeling bit it was better when I could tell myself that they just didn't know what I was going through. Now, that they've seen first hand all the work and effort, along with all the stress and sickness, liberally coated with cries for help, and they CHOOSE to ignore it, I feel worse than ever.
At first, they gave me props. Thanked me. I felt i had a support system. I dont know what happened. But as I grew weary and began to ask for help, the props lessened. As I began to get frustrated and react, I was abandoned. Unless, they need something of course.
Heavy sigh.....
Here's an example from last summer's fiasco when I needed to purge mom of her hoarding ways....at this point I had spent 2 weeks holidays working at home. Every day, every waking moment, never left the house except to walk the dogs (and one was my sister's). I had returned to work on week 3 and was 4 days in still having to do EVERYTHING while sister did ???????
At this time mom was very wobbly and was having troubles getting around, dressed etc. The incontinence was ridiculous. A constant stream of accidents and a wet bed working me to death.
Thursday night, after a full week of work, doing sister chores, mom chores, my stuff, maybe eat at 2am, I'm exhausted and one frayed nerve is all I have left. I've done the priority tasks and that's good enough for the evening. I just can’t do one.more.thing. I just need to make it through one more day of work and then I can breathe.
Before I make my great escape downstairs, mom takes a little spill in her bedroom. Mojorox to the rescue! While helping mom up and off to the washroom, sis emerges from her room (staying with us at the time) and surveys the scene. Mom has wet the bed I had just finished changing…….I can feel the emotion rising like Vesuvius and tell mom I’ll be back in 15 minutes to clean the bed. I go downstairs and begin to shake. I pour myself a giant shot from the liquor cabinet and begin to cry and can’t stop. Trying to count to 10 and remember to breathe. Sis walks in and looks at me in surprise “Why are you crying?”.
I have no words. I can only look at her in dismay…She exits. I finish my shot and pull it together. I go up thinking sis has started to change the bed and it’s always easier with 2 people.
Wrong. So very wrong.
She is nowhere to be found. She actually left the house without telling me after mom just had a fall and there’s a wet bed to contend with!!!!
@#!!*&???#^^&!!
I change the bedding and throw all the wet stuff out in the hall. Done. That’s when my sis walks in with food in hand. Now she has the room across from mom’s so she has to step over all the sheets, blankets, pillows etc to get to the door. “Do you need a hand changing the bed?”
Ummmm. No, I’m already done. Duh.
Does she follow through her offer to help by taking the soiled down to the laundry room and start a wash while I get mom back to bed?
Bwahahahahahhahah. No.
She goes into her room to eat her dinner or whatever. Since I’m starving and was not offered any, I proceed to cook my own damn dinner.
It’s 2am on a work night.
This is when her name changed to useless.
This was also the night before I found out that she was leaving and would not look after mom for my last week of holidays.
That was when I told her she was no longer my sister.
It would be too easy to say that I feel invisible. Instead, I feel painfully visible and entirely ignored. In my moments of greatest need.
I know that I said I would try to not dwell on the negative but I am having a hard time.
We are experiencing a minor crises with mom’s legs and my sister who has been too crazy busy at work to help me has gone up to visit useless these past 2 weeks and help her instead. She’s supposed to be my back-up with mom and couldn’t even bother to tell me she was leaving out of town. Wow.
With a very heavy heart I say “People Suck”
Depressed? Doesn’t even begin to cover it…..
TGIF
I’ll take your word on the promise that if you write a book I can count on a copy, hopefully autographed!
My agenda with contact names has become one where the “U” (as in Useless, to your very well made point) includes uncountable pages..!! I completely empathize.
But your story about the bed being wet, your sister not grasping WHY you were crying, her not caring to to a thing about the bed or your mom AND!!!..leaving to get dinner..not bringing you any and going to her bedroom to eat...!!! Lord Almighty, It’s hard to believe things like this actually happen in life. I’m so, so sorry Mojorox from my heart!
All of the sudden you completely made me realize I am actually lucky to not have anybody that I “should” be able to rely on. What I mean is I know that there are plenty of people that if they had a conscience and a heart and know my situation, I’d imagine and hope would be willing to help..but I’m an only child, all of that would be a ‘great to have’, not a ‘should have’...because that simply opens widely the door for deep disappointment...as if the situation of being a caregiver wasn’t enough reason for a heartbreak!
Hope that makes sense.
My mom’s birthday was yesterday, I worked SO hard, honestly, to make the day shine a little for her. She literally had spent at least two weeks literally in bed, not seeing the sun light, feeling bad. So finally got her in decent physical shape enough to get up, get dressed, and have a couple of her friends over to break her sickness routine for a day. I realized once again how lonely I’m in more than a thousand ways. People simply don’t realize what my world, our world is, and I also realized that I cannot hope for an ounce of understanding.
It’s a lonely life Mojorox, but at least we know there are others that are living what I like to call different shades of the same story. At least a little consolation!
I don’t keep writing because I’m so tired I need to close my eyes. Hope your week is going better. Take care!
Sometimes I wish I could run away but Mom needs me.
My life is basically over. This is just reality. I'm coming to think that caregivers don't have lives.
I know this was posted 8 years ago but I just read the phrase "Screaming Into the Night" and I must say I Laughed Out Loud.
Thank you
The Rest of My Possible World
I dreamt of grace and wisdom.
My mother’s virtues, surpassed.
Yet now I face each troubled day.
And cannot find the heart.
Not refined, knowing, good.
I failed to reach the best I could.
I am not one who rose above
I’ve rarely touched the best I can.
Dreamers live for what should be
And toil to make it real.
True hybrid breeds improve growth
Spreading forests in moral soil.
I wasted time believing ours
Would thrive from our Great Love
I never braced my own two feet
To stand in my own earth
The concealed weeds, parasites
Have sundered spine from limbs
And mortified our spirits through
till life is sand in open hands
And health is our despair.
Would-be grace succumbs to pain
Lost memory hobbles wit
And virtue has no tread where vigor’s grip is lost
Hope for joy now passed to offspring’s eyes.
May they persist in strength, and wisdom reach;
and health and courage keep their road ahead.
---SKG