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Mojorox,

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!!!
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@Fisherman
Also, we went to hospital because I thought we had leg infection. We were not in hospital prior to it.
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@ Fisherman
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.
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3 days was a more accurate statement.
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Mojorox .... I think it was you ... posted that your Mom had a leg infection while in the hospital. Do you or the professionals attribute that to her being in the hospital, her dementia disease or something else?

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.
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Mojorox .... I think it was you ... posted that your Mom had a leg infection while in the hospital. Do you or the professionals attribute that to her being in the hospital, her dementia disease or something else?

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.
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Avocado,
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.
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Mojorox
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.
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@ Avocado
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.
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@ Avocado
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.
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I can so relate to the statement, 'Do I need to be dead for anyone to care?' It has been about two months now since my already difficult father suddenly became even more unmanageable than he already was...it was like flipping a switch in November. And after having previously bragged to people about how he had stopped drinking after a fall and concussion four years ago, saying that he never drank at home, he suddenly decided that he was going to drink at home. We had a very dramatic night over it when I told him that I would not have alcohol in the house. And he is still driving which makes me very nervous. I cannot take away his keys without another person present and I have been desperately trying to get help. No help from his Dr yet, but I will give her one more chance next week. Spoke to a dementia advisor for the county in November...no help there. So today, when I noticed that he was having wine before noon, I called and told the police when he went out driving today. They had no advice either, but said that they would look for him where he usually goes shopping. I feel like I have been sending out an SOS for close to two months but nobody is responding. He was already having difficulty driving, and there is no way that he should be driving if he is going to be drinking again. Your post is spot on in so many ways!
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I've suffered with bouts of depression all my life. Some deeper and darker moments but mostly manageable. Flash foward to now.....welcome to my Bermuda triangle of depression!

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.
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Sending love and hugs to you all.

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.
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If anyone says no they don't deal with depression when caring for a loved one, they aren't being truthful. I have my mother with me in Florida right now 24/7 and will have had her for 4 month and maybe permanently . I am having a big issue with depression and it's only been 5 weeks since I have had her 24/7. My life is no longer my own. My husband is very supportive and without him I think I would break. I started taking Xanax when mom came. I was a nurse for over 40 years and I never thought I would have an issue with caring for mm and she isn't even total care yet, but the beginning of memory loss, the monitoring of diabets, her refusal to eat properly, her refusal to move, she just sits and sleeps a lot, all of this is taking its toll on me already. So you are absolutely justified in feeling depressed. Don't hesitate to talk to your do for about getting on an antidepressant and seek out a support group.
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Yes,every day. My life has no meaning except to house and care for dad. I'm so isolated, have zero friends and no time or money to go anywhere. At least I have my cats.
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I have been dealing with my angry, ornery 89-year old father for about two years now since my mother passed away in late November, 2015. I retired from my job this summer and almost wish that I hadn't. It has been a nightmare being in the same place with him for so much of the time. I am the POA and some of the legal stuff that is meant to help protect the house means that I have agreed to live with him for a certain amount of time and we have Joint Tenancy so I don't feel like I have the freedom to move out or place him in a facility just yet, but hopefully that will change sometime next year.

All that I can say about my father is that he was a good employee for the most part and worked six days a week during his last years of employment. But other than that, I have no fond memories of him. He has always had inappropriate anger management issues and is an alcoholic in denial. He should have acknowledged these things decades ago and gotten appropriate help and treatment. His current issues are in large part related to his alcoholism and I do hold people accountable for their actions. He gets no sympathy from me, and his anger and verbal abuse towards me is inexcusable. I deserve better than this, and hopefully I will get it before the end of next year. It would be different if his condition wasn't exacerbated by the alcohol, and if he had been a kind person before. But he wasn't.
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Zelda, he was diagnosed 5years in? OMG. I can't imagine. I've been coping 2 years and it is wearing me down. I am so sorry.
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Thank you.
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Zelda44. Please continue to vent here. It’s about the only place where so many understand. Hugs
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If only..... I've been married for thirty seven years. His
was cc'd with m.s. Five years in...two small children.
He's to the point where walking more than ten feet is
impossible. The constant neediness, dependency, New
and serious problems, the incontinence issues. I've reached
The point of every day I wonder which one of us will die
first. Truthfully I no longer care. I feel as if I have nothing
left to give...to anyone..him, me, our children. I have no
friends, very little interaction with "the outside world".
My relatives/sibs are all older and live quite a distance
away. I'm tired of it all. Glad to have a small cyber place to vent. Thanks all.
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Yup deeper by the day !
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This is an old post, but I would like to respond to oleput's question "what do you do when you no longer love the one you are a caregiver to?" Years ago, when my siblings and I started rotating 24/7 caregiving to both parents (along with some professional caregivers), I used to dread going to their house. There were so many unpleasant memories associated with their home and with my parents themselves. As an adult, my greatest joy was being able to leave after a short visit and go to my peaceful home, now I had to interact with them for long periods of time, when my impulse was to run. The hardest thing has been to do this with hardly any feelings of affection or love. Over the years of caregiving (which started about 16-17 years ago, when we had to take over their finances because they almost went bankrupt) a numbness has developed. Truly, as the oldest daughter, I have felt responsible for my Bipolar mom and alcoholic father all of my life. I remember a time whenI was very young when I loved them fiercely, but over the years, I suppose I started to protect my heart and I'm still doing it. Most of the time it works, but sometimes, a little crack opens up, and I feel so intensely that I can't bear it. So, I do my caregiving, from feeding to toileting with no feeling whatsoever. Before I start my caregiving, I ask God's grace to show them compassion and love even when I don't feel it. And I wait for it, because it comes. Of myself, I could not do any of it, from my father who is still at home to my mother who has now been placed in a facility and still needs my caregiving. But the grace comes, when asked for daily. It is really miraculous to me that I can appear to be such a loving, caring daughter when I am only doing so on God's grace and power.
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For "Misunderstood 10" perhaps you need to pack Mom up and drop her off at the brothers and tell them find the one for $5.00 hr and when you will be back give them list of meds Rx etc..........
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Yes, I'm depressed, so much that the clutter is piling up, I am barely holding on to my job, and the chores aren't getting done. Actually work is a saving grace because I have an aide take care of mom so for a few hours, I get a break. SSRI's work for many people but I can't tolerate them, and I get in a vicious cycle of too depressed to go to the gym or declutter the house, and then more depressed.

I think depression and anxiety go with caregiving, even when the parent is relatively easy to care for, and with a spouse, I imagine it's even worse.
If they become abusive, it seems that's the time to say enough.

My aunt cared for her husband with Alzheimer's. She put up with the wandering, the sundowning, the verbal and emotional abuse, lashing out at her in anger, but when he became physically violent, then she had to put him in a facility. Sometimes we can't do it any more, and when our mental and physical health is endangered, placement is the best option. That doesn't mean caregiving ends, since you still visit them and keep an eye on things, but it takes a different form.
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My "answer" is not really an answer, but an acknowledgement of your right to these feelings. I truly understand and am going through this too. I never thought this ,journey is one that I would be taking, and nothing prepares you for the fatigue and the sadness. My only advice may seem trite, but for me it works-as I journal my feelings but also find small things to be grateful for during even the hardest days and nights, a sunny morning, the crispness of the beginning of Autumn, petting my cat as he purrs in my lap, a pot of stew which means I don't have to cook our dinner for a couple of nights-thes are just a few things I write down. I was dubious at first, but find that it helps. Give yourself permission to shed tears and be sad too.
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Oleput, I have always been a believer in love, but, do think there are different kinds of love & yes, some forever & stronger than others.  For example, I may love a  friend, even a pet, but not anywhere close to my dear parents (rip).  That love & magnitude is different.

I do think it's a must to have compassion & empathy for others to caregive.  You have to feel sorrow, the desire to help, or to try & make a difference.  Think of all our first responders, they care, instincts seem to take over.  They are not always "bad guys."  Thank God for them.

Caregiving is a choice, you may  have to try & remember the love that used to be or  the good memories that you have for that someone you find you are now caring for, there may not be a lot, but hopefully a few that can bring on the "Wow I remember that," feel good moment.  Things may not  have turned out the way we hoped for but work on letting it go. 

There's nothing wrong if you choose or can't caregive for any reason & it's only fair, & right, to seek out other alternatives.  Someone abusive when well will probably be the same when ill, maybe even worse.  Caregivers have to care about themselves.  You have to keep yourself safe & well, mentally & physically.

Trust yourself, your feelings & your decision.  You matter!  

Blessings 🌸
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I have just read several pages and they are all about taking care of parents. Are there any threads on taking care of abusive husbands with dementia. I probably could have been a caregiver to my mom if it had been necessary. What I want to know is how do you deal when you longer love the person.
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Yes. I'm depressed. We moved, my husband and 2 kids, from Orange Co CA to my parents city in the Central Valley in 1990. Ever since our lives have been consumed by their lives. At first it was ok. We were young and enjoyed being close. At least I thought I did. Husband couldn't wait to get us away but that took 8 long years till we moved. Mom passed in 97 and so the 1.5 hr drive back and forth has been going on since. Brothers passed and now it's dad, his beer and dementia. We go down and work, work, work. physical work caring for 1 ac and his things. I come home and don't want to do a darn thing except watch tv. My husband is wonderful but he's wearing down. Dad hasn't wanted to pay for yard care and with so much junk sitting everywhere I'm not sure anyone would want to do it.
So I joined a gym to try to get out and get the endorphins up but I wonder too....how long?, and how hard?
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Fear. Fear of what's coming next and when. Pretending. Pretending a little bit to myself every day that today is status quo. Patience. Trying to get more of it. Annoyance. The stupidity I deal with on a daily basis. Guilt for thinking she is stupid. She is my mother. What a horrible person i am to think my mother is stupid. Sadness. This probably isn't half way over. Coping. Reading this site. Depression. Fighting it. Really hard . Hope for the future. 
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Its been 9 months since my father passed away. I was his primary caregiver and I feel not only am I struggling with grief but depression as well. I don't think any of us know what we are getting into till we are in the trenches every day. It is overwhelming and frustrating. There are so many challenges with siblings and other family members, rude doctors and nurses, and the list just goes on. None of us are martyrs or saints, it does take a toll.
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