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In the 5 1/2 years that I've lived with my mom and been her caregiver my life has fallen apart. She has dementia and degenerative disc disease. At this moment I have zero friends other than online. Family members have either disappeared or are fading away. I have no home of my own. I live with my mother and since her house is small and she's a hoarder there's really no room for me at all. I've lived these years out of boxes and laundry baskets. I can't leave her alone so I have to work from home. Freelance jobs are unpredictable and can disappear in an instant. I took over paying all her bills and expenses so I'm working 5,6,7 jobs at a time. I never get a break, I never leave the house, I'm growing old in a bedroom that's not mine in a house that's not mine. I'm alone all the time. Everything I own sits in a storage unit I can barely afford to pay for each month. I am depressed, I am exhausted mentally, emotionally, physically, financially and spiritually. Before moving in with my mom I'd lost my job, my home, my car, my kids, my sister and best friend died, my brother died and my relationship with the man I planned to marry ended. But I've had no one to go to for my own personal losses and grief. Everything focuses on my mom. I push back my own grief and loneliness and unhappiness so I can function enough to care for her and work my multiple jobs. Her dementia has turned her into a very rude, mean, stubborn person. Every day I'm told that I'm lazy, I'm stupid, I'm a liar, I'm an idiot, I'm a bad daughter, a bad mother, a bad person. I'm told that I obviously don't care at all about her because I've told her no about something or gotten mad. She does the exact opposite of whatever I say or ask or suggest. I know this because if I switch and ask the opposite she'll then oppose THAT. My mom's always been stubborn and manipulative and self-centered. Dementia hadn't caused that but it's worsened it and has removed any desire in her to curb it. I am the bad guy every day, always. We have two pets and I battle every single day, many times a day, for their health and safety. She feeds her pets anything she wants to feed them, this is very unhealthy for them, and since one of these pets is my dog I fight every day to keep him away from all the junk she puts down for him. Some of our biggest arguments have been because of this and it's honestly the stupidest conversation I've ever had to have every day. I never see my kids anymore because not only are they young adults just getting their lives, careers, families started but nobody wants to come to this house. I cannot blame them. But I'm always alone. I used to walk nightly just to cry, pray, calm down, or all of that but I don't have that any longer because I just spend the time worrying about what she's doing: feeding my dog junk, feeding the cat junk, locking herself out of the house, falling down. It's totally counterproductive now. I've not had a vacation from this since 2016 when I went with my sister-in-law to California. Being here, losing what I've lost, being around my mom all the time, going through all this alone, has all changed me. I hate who I am now. I hate the person my mom brings out in me. She now spends all day looking for, talking about, and asking about her parents - where are they, has her mom called, refusing to go anywhere because her mom will be looking for her, etc. My mom's 88 years old. Her parents have been dead for over 30 years. Every day I'm told to get out if her house, she doesn't want me, she doesn't need me. She calls me a "homeless idiot." There's no part of my life that's not broken now. There's no part of my life that is easy or happy or positive or normal. I'm no longer me. I go through the daily death of my mother, I'm always in mourning, all of her battles and problems are now mine, not hers as my own stuff gets pushed to the background.
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Kimber166 Nov 2019
Why on earth do you stay?
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Do not beat yourself up for the choices of your adult children, but DO put one foot in front of the other for yourself , if only for today. On April 24, 2016, everything changed in my life and I haven't taken a breath since then. My younger sister took her own life and mom had a stroke. It's been an insane 3 years of a divorce and care taking. The whole life is a disaster thing IS real, and I empathize. I used to have everything in its' place and a place for everything. Now I get home (after teaching full time AND part time), and care for mom. I cry far too much. I hate opening mail and yup, just trying to finish her last year taxes gives me heart attacks and a BP of 180. I loved to run but have gained 20+ pounds by stress eating and not having me time. You are NOT alone. Please find something , someone, that helps you to cherish who YOU still are in this world xx
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anonymous979634 Nov 2019
ScullyRed,

I’m grateful for your empathy and advice. I’m working on my own well-being, both mental and physical. I’ve got a long way to go but I feel like it’s a step. It’s people like you that have reached out and inspired me to be better. Thank you for your help.
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I am carepartner for my husband who had a stroke almost nine years ago. I believe in my marriage vows in sickness and in health! I believe if it was me he would do the same. Our daughter told my sister that she lost her mom and dad nine years ago! So I guess that says it all. I guess I have changed too. We do the best we can each day! DL
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anonymous979634 Nov 2019
I admire your dedication and determination. We all do the best we can do but goodness knows that some days are definitely better than others!
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I have it easy. I have an aide who takes care of J's urinary incontinence issues, showers him, sees that he doesn't fall and takes care of almost all of his physical needs. All I have to do 24/7 is: be the shopper and cook three meals a day, the secretary, the accountant, the supply clerk, the phone operator, the company and watchdog during his many hospital stays, the doctor coordinator, the drug coordinator, the PTs and OTs and nurses coordinator, the family "How is J" handler, the receiver of endless remarks on what I'm doing wrong and what I must do to make him eat more and exercise more, and the recipient of endless advice that I should be sure to take care of myself--in my spare time!
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bmillerhanna Nov 2019
Love your sense of humor. Some days, if you can't laugh, what's left?
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It's now been a little over a year since my MIL with Parkinsons moved in with my wife and I. This arrangement came on us very suddenly as she fell twice in 2 days at her home, both times with an ambulance showing up. In a matter of 1 weekend, we went from coming and going as we pleased, to almost no privacy, independence, and spontaneity whatsoever. While I've tried my best to not have days that I get pretty down, it's impossible not to have them crop up. Plus, the deepening feeling of resentment. My wife and I are 58 and 56 years old. These should be our most enjoyable times. This has had a definite affect on our relationship.

Bottom line, if I knew how things would be, I would have NEVER allowed this living arrangement to happen. Especially if I would have had the insight that I've received from this forum ahead of time!! Would my refusal to allow her to move in affected my relationship with my wife? Maybe, maybe not. But allowing her to move in has anyway, so what difference would it have made?
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losingitinmo Nov 2019
Thank you for posting; it's so helpful to hear that I'm not alone. Six months ago we started planning an additional bedroom and bath to be added to our house, thinking that my 93 year old mother could move in with us. Then, before construction was even started, my mom needed surgery and stayed with us for eight weeks to recover. We got a taste of what it would be like to have her live with us. My every moment belonged to her. I was never allowed to leave her sight -- I couldn't run errands, or do something with my husband or daughter. If I even went to my bedroom to read a book, she'd come find me and demand to know why I wasn't sitting next to her on the couch watching TV. My kids hid in their rooms all summer. My husband started working late to avoid coming home. I started having heart palpitations from the stress. Everyone was miserable. We were lucky to have gotten a chance to do a trial run before we committed to having her live with us permanently. Hoping for you and your family that your MIL agrees to AL in the near future and that you get your lives back.
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I am also and only child. My husband is great but he worries about his own mother who is several states away.
Mom and I had an interesting relationship - mostly good but when not - rshe could be really tough. IShe went down fast - one year ago she was living by herselg with help twice per week. Today she is in Memory Care. 9 months ago it was clear she couldn't manage days and nights on her own so I was paying for 24 hour care and basically running and AL home (that is what someone told me - I never realized it!). The move was hard. Her CHF has gotten worse - of course I wonder is that because she lives in MC or because it was happening any way (she is 96). Either way, the MC place is small and very caring. They don't do everything the way I want but they do everything! I can go visit and now there are only "good" visits and timed the amount I want. She wasn't ready any sooner than I took her. I also remember she was happy to move in until she realized that this was where she was staying. That broke my heart a bit. But she didn't know her house either so she missed something - not sure what.
I fully support finding a place away from your own home. This gives a separation that I cannot imagine not having. You all who are keeping your loved ones at home with you - you have my heartfelt admiration. Also know if you want to make a change....you can. No regrets - they aren't helpful!
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Your circumstances sound very dire. Can you have an honest & open conversation with your adult children now about what’s best for all of you? I care for my mom and both my in-laws in our house. I’m very resentful of my siblings and my husband, who wanted his parents to move in but doesn’t lift a finger. I’m instructing our kids to put me in a nursing home but commit to visiting me regularly. I don’t want them to have to set their lives aside to take care of me. My own dad had Alzheimer’s and my mom has dementia. The odds I’m headed down the same cliff are high. It’s just too hard to care for people at home while trying to maintain a life.
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anonymous979634 Nov 2019
Hi Violet

Thank you for the advice. You’ve got so much going on in your own life, I’m humbled that you reached out. I appreciate it. Like you, I told my children to carry on with their lives and place me in a nursing home if the time should arise. I don’t know that they will but I want them to know it’s okay. They deserve that.
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I moved from Hawaii back to upstate NY to become the 7/24 caregiver for my beloved mom who was in middle stages of dementia. It was MUCH harder than I thought because she would always want to come with me-- "I'll sit in the car" -- wherever I went. I felt like a prisoner. That lasted all of 8 months until I had a heart attack due to the stress. (I'm 61) From my hospital bed, I had to beg a local Memory Care facility to take her in since I could no longer care for her. Luckily, I had already made contact with them when touring facilities, so they bent over backwards to take her. That move caused her to deteriorate rapidly and now she is in a nursing home (long term care) burning through her life savings (despite her healthy pension AND having paid for a LTC policy since 1995. The charge per month at this place is over $15,000).
Meanwhile, I still stress over her everyday because I have to be her guardian and advocate at the nursing home and make sure they are treating her right.
I stress over her finances because her savings will only cover her for the next 2.5 years. It's considerably less stress than when I was 24/7 caretaker, but I still feel my life is not my own.
And the worst part of all is watching the brilliant woman who was stuffed with common sense struggle to even figure out where she is and who I am. Every visit to her is stressful to me, now. I miss the mother I used to adore and respect. It's hard to love a cantankerous shell of a person. Thanks for listening.
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anonymous979634 Nov 2019
I am happy to listen any time. I only wish I could do more. I can relate to what you describe though. Whether our loved ones are in the home or in a facility, the stress is the common denominator. And when you get a routine and think it’s okay, something else happens to pull the rug out from under you.
I also appreciate what you’re saying about missing the person your mom used to be. My dad is actively dying and people think that’s the worst thing in the world. But from my perspective, “my dad” is already gone. I mourn every day for the person he was. It’s incredibly painful to stand witness to that physical and intellectual decline. Of course I’ll miss him, but most people don’t understand that I already do.
Thank you for sharing your story with me. You’re in my thoughts.
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Boy have you got that right.
I have a blind, disabled 65 yr old wife, and a bipolar schizophrenic 44 yr old-going-on-16 son who came back home.
I used to be free. Amiable separation, apartment, job, little dog, come and go as I pleased.

Then, doing the moral thing? I moved in to help when her vision failed, and soon after came our son, fresh out of the Pen to add to the pot.
I have no free time. I have to juggle two unhappy, illogical people, cook, clean, laundry, shop, drive, etc., on a fixed income. I'm working more now than in my past careers and getting poor.
I'm supposed to be retired! (70) Is this what I can expect til dead?
I am a bit depressed.
I wholly sympathize with you. Your selfish kids should help you first! Please watch your health and eat healthy. I know it's a pain to do, just more work. There are housing, food, and counciling programs out there that are good, they just take persistence to get.
I'll think about you and send good energy, its all I got.🙂
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anonymous979634 Nov 2019
Tucson,

Thank you for writing. I truly do learn something from everyone and appreciate feeling less alone in my struggles. You’ve taken on a lot and doing the best you can. I’ll be thinking of you and your family also. Keep us posted. Good energy received and returned!
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I became, as many here, less tolerant. Though I don't lash out at them, I feel fed up with people giving advice. I don't mind advice, but what I get fed up with is that they give advice to ease their mind about not helping, not to really think of our situation. Typical advice, for instance, to someone having an alzheimer parent, is : you should write things down for them (when you tell people that your mother has forgotten how to open her door for instance). These people give the advice without asking first how things go. If they did, they would know that you have already written on the door, that your mother has problems understanding what she reads and forgets it as soon as she does. And even if she manages to open, once she is out, she won't be able to enter back. So, you HAVE to live with her and do it, or have her live in a specialized place. But people don't want to know (it frightens them). They want to give quick and irrelevant advice, to feel better about themselves, and to reassure themselves that you can keep a moderate freedom with a few tricks.
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anonymous979634 Nov 2019
FreddieFr,

You’re absolutely right. I’m sure my eyes glaze over when someone is giving me ridiculous advice. It really just shows how clueless they are and is completely useless. So, I appreciate your frustration. I keep hoping someone will show up and say something sensible like, “Here’s some money. Go get some lunch or get a haircut and take a walk in the park. I’ll stay with your dad.” That person never appears.
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First, may God grant eternal reward to those of you who take care of a LO in your own home.
In my situation, my wife and I each have a mother in AL. My mother has alz and my wife's mother was seriously injured in a fall down her basement steps. We both advocate for them, visit them, and administer all their financial needs.
I had always been in control of my life. But I have been humbled. There is no planning possible. Some good days and some really bad. I never know. It gives me great anxiety. When I am anxious I eat. I have gained weight since I have been monitoring my mother. My friendships have diminished a bit. My relationships with siblings have hardened. I have four. Two are moderately supportive from five hundred miles away. Two don't give a darn and never check in to see how I am doing. I would like to travel but must always plan for the needs of the moms. I would like to visit my children more frequently but before I do I must always make sure there are sufficient plans in place for the moms. The relationship with my wife has deteriorated. She is stressed and I am stressed. She retired early to take better care of her mother and I think she resents it. The backwash from that sentiment lands on me. We never communicated well but now it is terrible. We try to take a break but they seldom work out. Example: near the end of a recent trip my wife got a call that her mother had been taken to the hospital after a fall. We returned early and instead of slowly unwinding she immediately had to spend the next night with her mother at the hospital. I admit I resent the time her mother requires as I am sure she resents the time I spend with mine. We have a workable arrangement but...
I could go on but won't. Just writing this reply has been therapeudic (sic). We were both the most logical candidates to take care of the moms but doing so has been tougher than we imagined and I am doubtful our relationship will ever heal.
There I said it. You asked. I realize every family has these issues. So I feel kind of selfish for complaining. I don't know what to wish for anymore other than that tomorrow will be a better day.
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anonymous979634 Nov 2019
WVson1,

Thank you so much for sharing your situation. I’m glad it was therapeutic to write it down but please know it’s also very therapeutic for me (and others) to read. I have to say that this forum has been a miracle for me. It doesn’t change my circumstances but I don’t feel so alone as I’m navigating through them. Perhaps it will help you as well. Hoping for that better day for you, your wife, and your respective moms.
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My mom is 93 and now takes up most of my time and concern.  I have no life, so I decided to retire early and take the social security cut I am getting at 64 years old. I have no friends, no social life, and I feel like I am just a servant, like I was born to be nobody, and sometimes I think I'm just invisible to everyone. I love my mother, but I honestly thought this situation would not last that long. I know this sounds selfish, but I want to do some things on my own bucket list. I will never be able to; mom is fairly healthy and likely to live past 100 years old.  My brother and sister live out of state and have visited mom, but they have never let me know when they may be here to take over for a few days. I have this awful fantasy that if mom should die before me, I will not have a funeral, I just don't want to see anyone who says they care but never came by, never showed any concern, never lent a hand. If I die first, I don't know what will happen to her, but maybe then one of her other "kids" would step up to the plate.  Anyway, I retire at the end of 2019 and I look forward to joining a gym first. Then, maybe taking myself to a leisurely lunch where I can get the foods that I like instead of always having to consider what mom likes.  And if possible, I will become that volunteer in my community that I always thought I could do when I no longer had a job. Of course, I can only do any of those things for an hour or two at a time because my time is not my own.  Do I sound like a brat? I may sound like a selfish brat, but I am being honest about how I feel about me and my life. Burnout is real.
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Tucson70 Nov 2019
Hi Forgotten 2, I thought I had written your post! Ain't life grand?
I'll be turning 70 soon, wait'll I'm gone and my sponges meet the real world- hah!
Hang in there.😉
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Your comments could have been written by me. Like you, I've been stripped of everything including a place to live when this is over. I cry endlessly at times and have been for 1 month now. Yes i would do things differently. I should have packed my son up when he was younger and moved us far away years a go. My mother would have had to make decisions on her own rather than just moving in on me to be her constant slave. It is highly unfair to lean on a child to take care of them 24/7. She should have prepared for these years long a go. And i should have too. Now I'm not strong enough to do anything about this role I've taken on. I've spent literally hours doing research trying to find ways to solve my situation but to no avail. It indeed takes a village to do this work no matter how much you love your LO.
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anonymous979634 Nov 2019
EssieMarie,

I was touched by your story. Caregiving is such an overwhelming task that it really does take a village. And yet there is none. When I was young, there seemed to be a sense of community. When something happened, neighbors showed up with casseroles and offered to babysit, etc. I don’t see that now. My neighbors aren’t bad people, they just don’t want to get involved. I don’t know what the answer is but appreciate you reaching out and hope for better days for you. Hugs.
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Hmmmm, so you’re all telling me I’m not the only one who thought God was calling? 

Thanks for putting this out there, Canoe. While still in the early phases of caregiving, my spouse and I have made significant changes to our lives to be closer to my parents and help them out. And in the 3 years we’ve been around, I’ve been astonished to see my siblings taking baby-steps away, setting themselves up for being unavailable in the future, while telling me “No one asked you to do this.” They’ve even made jokes about me coming to take care of them when my parents are gone. (Yeah, no.) So I feel like a sucker, at times. It’s totally true, no one asked me to be here, and in the beginning, no one could have stopped me.

This forum has helped me see what’s coming, and I thank everyone for sharing their experiences, good and bad. I am resolved to setting boundaries and not letting toes slip over the line. I am slowly understanding that there’s a fine line between “helping” and enabling; that I can help my parents navigate their future, but I can’t save them from what’s coming; and that, when all is said and done, only my siblings will profit from me running my life into the ground for my parents.  To be clear, I could not live with myself doing nothing for my folks. But I know now that I have to have a plan for myself, despite the fact my parents continue to have no plan for themselves. And I cannot be their full-time care plan.

I continue to think God has called us. Just not as sure as I was that I understood the message correctly.
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anonymous979634 Nov 2019
Thank you for your heartfelt reply. Your last 2 sentences stopped me in my tracks. You’re right. Instead of questioning my faith and discernment, I just needed clarity on the message.
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Caregiving has profoundly affected my life. Before I gradually started taking on the responsibility of both parents I was single, life was fairly pleasant, happy.. I was pretty free.. I did work but I only had responsibility for myself and could spend my free time as I wanted.

My Dad started getting signs of dementia. in 2012.. he was functional for another year.. year and a half.. but between 2013 and 2014 he really couldn't do much on his own. My mom was extremely stressed caring for my Dad and seeing his mental decline and she had a mini stroke in 2014.

So from 2014 to today I have had varying levels of responsibility for them. Instead of being a person on my own... my life became about them. People no longer asked how I was..it was always about my parents.

I have 3 siblings but they all live in other states miles away and they became less and less involved in my parents lives as they slid downhill. There were fewer to no calls, no more cards for birthdays, holidays... and no more gifts or visits.. they were backing away from me and from my parents.

Fast forward to last April and my father is on hospice, advancing dementia.. at this point my mom also has a dementia diagnosis and they have both moved into a memory care. My father had a blockage in his intestines that the drs said he would most likely not survive a surgery from and if he did would not have good quality of life.

Now.. one of my fantasies was that at some point my siblings would realize just how much I had given up to care for my parents all these years... well.. that did not happen.. in fact when they did show up (finally show up for my Dad dying)... they were all against me, blaming me for his death, were cruel to me the entire time they were in town.

So needless to say.. the fantasy did not come true... they not only weren't grateful to me .. they blamed me.

Being in this caregiving role kind of opened my eyes to people and what they are really like. It drove a wedge between me and pretty much all my pre caregiving relationships. The times when I need these relationships the most is when I had them the least.

There are a few good parts .. one is that it really strengthens who you are and what you can bear.. I can't believe I handled 2 parents with dementia.. virtually alone for all these years. I can't believe I could keep going after really losing so many relationships..also keeping my job through it all as well.

Now I am trying to restart my life.. I am not totally successful at it .. but I'm going to give it a good try.
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whatdidigetinto Nov 2019
Keep going, katiekay. You did good. No one who's not on this kind of journey would ever believe it!
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I feel very fortunate to have two family members helping me with my mom, but I had my problems too, especially at the beginning of my caregiving journey for my 97 year old mother. I have done it alone for eight years before I had help. It is not easy but with faith and determination I am able to care for my dear mother. I became a stronger person through the 19 years of caregiving. I am now able to say no to others, and not feel too bad about it.I am able to take one day at a time, I am more conscious of other caregivers in the same position as myself, I enjoy the little things in life. I enjoy lifting up the blinds in my mothers room in the early morning and let the sunshine in, I enjoy seeing my mom sleeping with a smile on her face. I enjoy a smile from a stranger, a warm hello, a car letting me go first. I learned so much since caregiving, I am wiser. I let things ride more, learning not to be a perfectionist in most things, learning to say nooooooo!!! to others. Thank you, certrude for your wonderful post. It made me think too.
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anonymous979634 Nov 2019
Early bird,

You are wise indeed. I admire your graciousness. I’m working on mine and also praying for patience. I’m grateful for everyone that shares a part of themselves to help me through!
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Who choose? Money makes the decision.
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Shayze Nov 2019
Absolutely! Mom’s only income is Social Security. She is 89 my dad died 30 years ago and therefore her savings is gone.

I wish for for her sake and mine that things were different and more options for her care were available.
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Well I found out what younger sister is made of...

I am a *one thing at a time* person, no multi-tasker here & I admit it!

But YS is a *one thing in front of my face right now" person. Eg her kids, cooking dinner, tomorrow's agenda. That's it. No parent welfare AT ALL. She is a very caring person... just in thoughts & prayers. Not hands on practical help.

Regrets? Not really. Just wished I'd figured out it would be just me earlier.
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anonymous979634 Nov 2019
Hi Beatty,

Sounds like we both learned what our siblings are made of the hard way. Thank you for your comment!
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My mother ended her journey with dementia Aug 17 2019 and I found myself in the same situation... my personal journey of caregiving lasted 10+ years through both parents... I found myself with 30 days to leave behind a home because it was in a 55 and over community, no job, freinds I thought I had have almost all turned out to be fairweathered types today only calling when they need something or think I have money to lend (let's face it 'lend' is just a nice way of saying give.), I had to restart my whole life at age 50 and not many jobs look at caregiving as a redeming attribute on a application so I had to learn to really dress it up and call it 'Self Employed' to even get interviews...
I'm still struggling a bit, made the mistake of jumping on the first job I got offered and about killed myself to make a few extra bucks but things are finally starting to level out in life... I have no family to bail me out if I fail so stress and anxiety have ruled a lot of my time along with serious self doubt but as I said it starts to balance itself out over time, the self doubt is still sticking around but not as bad today I'm between jobs yet again but should be starting a job in the week where I know the business and feel more comfortable in my own skills set to make it work and it's not a highly physical demanding type job like the others I jumped on in a moment of panic to just get back to work... although I don't discredit those jobs because they did force me back into the flow which was something I desperately needed to get through a ton of depression and sorrow... now facing the holidays alone I do some reflecting it's the first Thanksgiving alone, first Christmas, you get the picture but I'm feeling okay with it... I'll manage.
Time feels against you and the weight of the world is on your shoulders to work and put a roof over your head, it's not an easy time but you will get through it... I know it sounds like BS right now but I was there, I lived through it, I made many mistakes along the way... and yet I'm still here today, not going to lie it sucks in the beginning and depending on how long you've been out of circulation may take more time to get back into the swing of life... but we must carry on...
Personally I made the choice to live in a Van I converted in those 30 days to get out and have been living pretty comfortable at a campground for the past month, before that lots of hotel hopping and boondocking while I was searching, I'm happier now then I have been in a long time not a 100% mind you but getting there.
You've just gotta keep working towards your goals and time will heal the wounds sooner then later you'll find life is beginning to come back together in the mean time just know many of us have or are going through exactly the same situation as yourself and feel free to lean on us for support when times get tough...
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anonymous979634 Nov 2019
Madhatter,

Wow. No it doesn’t sound like BS. I guess we all need to be reminded that life goes on and to keep placing one for in front of the other. You’ve inspired me and I really needed that. Hug!
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I almost destroyed my own health years ago by caring 24/7 for almost six months for my MIL. Fortunately she passed right before my breaking point. At that time I swore that I would not put myself in that position again. Fast forward years later and my mother reached a point that she could not live alone and appeared to have only one year max to live. Six years from that decision she is still alive and more needy but not at the critical care level - just at the level of the needs of a three year old. My health has been going downhill rapidly and NOW my husbands health is failing and I have two people completely dependent on me. I retired a month before my mom came to live with us and have not been able to travel or just relax at all. I feel both my husband and mother are very selfish individuals and expect that my life should revolve around them completely. I was a very young mom and had three children with my first husband during the Vietnam era and with the now identified PTSD that he experienced raised the kids alone and with a lot of stress. I realize that we all have our burdens in life and everything could be worse. However I am at the point of hoping for my early death just to escape. And I do try to self help with walking the dog and practicing yoga and stretching exercises and everything else. I used to feel there may be an end in sight with one or both of their passing but I realize that is only a fallacy. They will outlive me as the stress of taking care of the two of the them is destroying my well being. I hope should I reach a point where I need care that I will consider the incredible burden it creates and check myself into a care facility instead of allowing family or friends to become unpaid; under appreciated and unqualified untrained care professionals.
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anonymous979634 Nov 2019
Pamgman,

My first instinct is to just hug you and then I wish I could just step in and help you in some way. Honestly, I’m so sorry you’ve had to endure all that you have. I have no easy answers, but know you have a sounding board here. I care and there’s wonderful people here that care too. Please vent as much as you need to.
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I cared for my mom 15 years, and the last 5 years required around-the-clock supervision and the last 3 months she was totally bedridden. I sacrificed my life for mom, but she received the best care anybody could ever hope for. I do not regret it, but at 59 years old it is difficult to restart my life, especially with age discrimination in the work place.

The decision to be a caregiver is a personal one and you will sacrifice your life for a very feeble person whose prognosis means they will get worse with no hope getting better. I never been separated from my mom all my life so this has been especially hard on me. For myself putting her in a nursing home was NOT an option. I thought about it but was unable so my finances are in a shambles, as is my life.

Mom has not been mom for at least 10 years..she was not the same person I used to know, go out with, enjoy stores and flea markets and just doing things together. The last five required around-the-clock supervision since she tended to wander--and fall in the middle of the street so working was out. The last six months of her life getting her out of bed was excpetionally difficult and on July 9, 2019, she lost the ability to walk..not that she couldn't, but she forgot how and could not focus on the task. In the end she died of liver tumors. Not Alzheimer's disease. She was bedridden for only a few months. That was just a month ago and my life is devastated. I took care of mum all by myself and received no help from anybody. It was very hard and stressful. I am thankful she reached 90 years of age. She had to get a feeding tube because she forgot how to eat and drink, but she was healthy until her liver failed due to underlying liver tumors. If she did not have liver failure she would have lived for years more even though 100% bedridden and unable to respond to the environment. She could not even move her facial muscles and I had to do range of motion a few times a day so her arms would not lock up and get contractured. She never bothered that feeding tube and I did daily dressing changes it never got infected. Her needs were met. I flushed her tube well with water, so it never got clogged.

I've managed to get back to work..thank God. Employers DO understand since most people have been touched or was affected by Alzheimer's disease. DO NOT go deep into it, but simply explain the reason why long absence from work is 24 hour care required. Keep on plugging away eventually you will land a job.
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keepingup Nov 2019
Thankyou for your wisdom. I was 60 when my narcissistic mother, for whom I had been a caregiver for ten years, passed away. I contacted friend and old employers I hadn't talked to for years and was surprised and shocked at the understanding. I felt exactly like the lady here. I want to encourage her to find support groups, starting with this great site. I know it is excruciating....the depression is unbearable....but I promise there is hope. Just the examples she has given as a caregiver illuminates what a fine person she is. Many hugs, prayers...
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I noticed how many comments above came from fellow only children. This is very heartening. I am retired caring for two: an 89 old Dad with dementia and a very lucid and alert 87 yr old Mom with mobility problems. I spend a lot of time day dreaming of life without them in a warm Florida climate- I live in very cold Montana- and feel guilty about it, I do a lot of volunteering to get away and when the weather is nice and the bears aren’t out, I walk my newly rescued from a puppy factory little dog. I read a lot, listen to interesting podcasts, go to social events in my small town but still am missing something.
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anonymous979634 Nov 2019
Hi Bob

It sounds like you’re doing the best you can for your parents and yourself and your little dog. Animals have been a blessing in my life and I trust that your rescue will be the same in yours.
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I still feel guilty. It’s been 3 months. She , my mother, has Alzheimer’s. I’m an only child. No support , period. Placing her was harder than giving birth . It had to be done. She was failing daily, I could no longer do it on my own. She’s fine, she’s as happy as she can be in memory care, and I no longer wake up 6 times a night checking on her with a heart rate of 120 and blood pressure 170 / over something. I’m 58 , 5 feet 3 , weigh 115, walk 10000 steps a day. Didn’t matter with the stress of 24/7 care for Alzheimer’s parent. Those are my readings, not hers. She was / is great.shes been on blood pressure meds for years
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anonymous979634 Nov 2019
Ellie,

I’ve found that the right decisions are always the hardest to make. Long story, but I had to have my mom placed in LTC at one point. It was absolutely the right choice but that didn’t stop me from feeling guilty. I guess the guilt is something we have to work through. Please know that you sharing your feelings helps me deal with my own. Thank you for that.
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I'm done with CG for parents. My dad passed away 15 years ago and mother has continued to live with YB and his family. Slowly, my BROTHER has begun to have some serious issues with health, both mental and physical. He is holding mother 'hostage' and what he says goes.

I used to go to mother's place twice a week and clean and run errands or do whatever she needed. About 3 years ago it just got to be too hard. I called a family mtg to discuss bringing in outside help. Just a calm family mtg to all be sure we were on the same page....not a financial worry about this, she had insurance for just this kind of thing.

Brother absolutely blew up. I mean, screaming and pounding on the table. I have no idea where this anger came from--he complains incessantly about her living there--all I was talking about was 2 day a week help for 4 hours--he went crazy.

The other 3 sibs just sat there--open mouthed.

The takeaway was that HE didn't want help for mother. He does not get paid for caring for her. She covers a few of the bills for the family, and maybe he was worried those wouldn't be paid (he has lived above his income for 32 years--the rest of us sibs always slip him a nice chunk of money at the end of each year)...

CG after that, for me, was non existent. And since not one of my sibs would stand up for me--there was a tremendous amount of hurt. I went less and less and had to OK every visit with YB. It just came to be too much.

I just finished 7 months of chemotherapy.....I have been so sick and sooooo tired, and mother was told I was 'lying for attention' and so she never bothered to call or see how I was doing. Final straw on this camel's back.

I am bitter about the total lack of gratitude from all sibs and mother alike for 15 years of helping to care for her. After she dies, I will probably have no relationship with a couple of my sibs.

I DO see families where they have multi-generational families living under one roof and I admire and they do seem to get along well. Whatever their 'secret' we didn't figure it out.
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Beatty Nov 2019
Do whatever you need to do to protect yourself. I love your writing & insight!! Your relatives are overpassing a gem. Their loss. Hugs to you.
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I would not do this again. I love my Mother but if I had it to do again I would not. It consumes your life day and night. I retired to take care of her and thought she would not be around long as Dr's said 3 weeks at the most ,but it has been 3 yrs since she went into Hospice care at home and I have had no life since. I have to pay someone to come just to give me a break for an hour or two and it is eating up my retirement and savings. I was sure this was God's plan for me to do this but now I wonder if I will make it through.. It is very stressful and is affecting my health, I have no social life and have put on weight that my Dr calls stress weight. Please, if you read this be aware of the pitfalls of taking a loved one into your home and caring for them. I still love my Mother very much but am beginning to wonder if I really like her..and that ,is where I struggle most. God Bless to all caregivers, it is the hardest ting you will ever do. Oh and if you think your family will jump in and help out, don't count on it.
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anonymous979634 Nov 2019
Suzierich,

Thank you for your response. I’m so sorry for all you’ve had to endure. Like you, I thought it was God’s plan for me to take on the caregiving in the family. But in retrospect, I feel like it’s been a suicide mission. I’m doing the best I can but if I had it to do over, I would say no as well. Hugs to you.
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I placed my parents in Assisted Living back in 2014 when dad fell and broke a hip. He passed in 2015 and mother is still in Assisted Living, now in the Memory Care building due to dementia and being wheelchair bound. I have no regrets about placing them where they were, and are, properly cared for by trained care givers. I don't have the desire or the knowledge to do it myself, and know that what little relationship I have with my mother would be completely obliterated if she lived with me. I grew up in a home where her mother lived with us and to say it was a nightmare would be a gross understatement.

As an only child, I have no siblings to help me out, and do all the care giving myself from 4 miles away. Doctors, emergency rooms, rehab, specialists, care conferences, medication meetings.....even though mother lives in AL, my job as her POA is more than enough. Just the bill paying and financial management aspect of this is quite a lot to deal with. Applying for Medicaid will be my next gargantuan task if she's still alive in 18 months when her money runs out. She's 93 in January.

No regrets, but still tired and stressed out about all the drama and medical /financial issues that keep me involved continuously. No matter how we care give, up close or from a few miles away, there is TON involved.
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anonymous979634 Nov 2019
Lealonnie,
Thank you for your response. I am most struck by your last sentence. There IS a ton involved and every day seems to bring a new adventure. For me, I honestly had no idea exactly how difficult it would be.
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I have no regrets for stepping up to the plate and doing my part. However, I've become distant from my siblings and attempt to avoid them as much as possible. An aging parent needing care will bring out the very best or worse in either the person caring for them or their family members. Especially siblings. On at least two occasions I've seen the very worst in my siblings. First when with my father and now with my mother.

I've come to realize the close knit family I thought was there, would be there in any crisis are very shallow, back stabbing, self-centered individuals who've leveled false accusations against me of which none are true. I feel so betrayed by them, and realize I'm better off distancing myself from them. Both the caring or helping to care, first for my father, now my mother (I'm basically alone), along with the false accusations began to impact my physical, emotional and psychological health. I realize the few times they stop by is because they've gotten wind of some out of town relative from out of state coming into town, so they feel a need to rush over and put on a good front. On those occasions they'll stop by moms place prior to the out of towners coming and bring a few items, and continue to show up sporadically while the out of towners are there, even bringing over a little money to soften her up so when that out of town relative ask who comes around she'll start naming them. Giving the impression they're always there. Which isn't true. Usually, I get pushed back to the background anyway when 'company' arrives. I become invisible, even with mom. And there's always the barbs, and sly insults aimed at me I ignore for her sake. Otherwise, I'd have told them where to go and how to get there a long time ago.

The only reason I've not packed up and left altogether is to be there when she needs it, and I'm cordial if and when any sibling drops by and I happen to be there (I'm not the confrontational type, but I do have my limits), but I make a quick exist, because I can no longer stand to be in their presence. . If and when 'that' time comes and I outlive mom, which is a toss up at this point, I plan on severing all ties with the family and moving away.

I'm tired. Most of all I'm tired of all the false accusations I've had to endure. One sibling actually tried to get his police former son-in-law to come out and search my house looking for mom's 'things' he thought I have, but never had. There is no money to my knowledge, but some of them have even accused me of taking money from her when I actually give her a small monthly allowance (50-100) to help spread her small SS check.
When she had to have surgery in another city, but the same state, my daughter from out of state would travel to town and we shared rental car and gas expenses to get her back and forth to that hospital for post surgical followups, because my car at the time wasn't in good condition for traveling. They never offered so much as help with gas money. I've been accused of trying to 'control' the situation when it was they who drifted away and eventually stopped coming around. To the point that mom came to rely heavily more and more on me. So on the rare occasion they'd offer to take her somewhere she'd immediately say "That's okay. I'll get _______ (me) to take me."

If I sound bitter, maybe I am. I don't even know my own feelings anymore. It's as if I've had to place everything on the back burner when it comes to emotions and even my physical health. The one feeling I do recognize is that of a deep hurt I don't think I will ever get over anytime soon.
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anonymous979634 Nov 2019
Thank you for sharing all that. For you to describe in detail the issues you’ve had with your siblings is incredibly therapeutic for me. They mirror many of the issues I’ve had with my own. Like you said, it’s the deep hurt, the betrayal from the very people who should’ve had your back...it’s devastating. Hugs to you and thank you for helping me.
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I have become a much harder person - and less sympathetic. Taking care (only one weekend a month but it went on for five years) of my dad and dealing with manipulation, anger, self-pity, violence (he blackened my eye, broke my arm), refusal to bathe, change depends, cooperate, etc - I got all of the negativity of caregiving. I didn't get positives such as a closer relationship.  Plus people judging me for not doing enough and being a horse-chit daughter and being vocal about it. (my stepmom, the full time caregive, did NOT judge, she was grateful for the help as no one else offered - for all of their sanctimonious pearl clutching and tut-tutting)

So, when people are feeling sorry for themselves - I'm not the most patient listener. And I have flat out told my mom, and my IN LAWS, who all want to ring a bell and I'll respond to do whatever they don't feel like doing - NO - hire someone. I have a job that is full time and much overtime, a house, a husband and 11-year old son. I do not have time for stuff they don't want to do. Hire it out, do it  yourself, or if you cannot - move and I'll help you research places and services. But if you keep rejecting what I find - then I will back out and you can take over.

I have told my mom and IN LAWS - no one is moving in. Disappointing both mom and MIL, especially MIL who has never lived on her own, or made a financial decision, has just been the little housewife. They complain about this decision to all and everyone and again - I am a horse-chit daughter and daughter in law. I do not care. I have learned to smile and "bean dip" the conversation.

Now, to those truly struggling, who try and really look for avenues and not just to ding a bell - I will help. Such as my step mom - who NEVER asks me to do anything - just visit and have a cup of coffee and a few laughs. I do like to surprise her by washing her windows while she is at the grocery store and stuff like that.

Fire away.  Flame resistant suit on.
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anonymous979634 Nov 2019
It’s interesting that you mention becoming a harder person. I think in many ways that I have as well. I find my tolerance for bs is completely gone. It definitely changes you and your priorities. Thanks!
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My husband had a stroke 7 years ago. He recovered nicely and was very capable of leading a normal life. However, in the past 3 years he has deteriorated so much. He can no longer drive, gets lost in our small house, and has difficulty remembering even simple things. His daughter is not interested in his well being and I am his only caregiver. I still work full time and I am exhausted. If I question anything or suggest going to the doctor, he gets very upset. for about a month now he has been sitting on the couch with 2 big knives, just recently, he has added a gun. I am afraid that he will hurt himself or not recognize me and hurt me. So, my caregiver experience has been one of constant worry and fear.
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anonymous979634 Nov 2019
I am stunned by what you have written. You recognize that you are not safe and neither is he. Please don’t accept this as okay. It is obvious that you love him and care for him but there has to be intervention. Any suggestion of self harm or harm to you, he should be baker acted. From where I sit, just the fact that he has gathered weapons is a threat. Please contact someone immediately. This will not be easy but it has to happen. Don’t wait. Pick up the phone. 911.
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Yes, regrets and I'm still in the early stages of being a CG!

I would not have had my parents move in before they really needed to. I would have suggested AL instead of moving into my house when they couldn't and didn't want to take care of a big house and yard. I would not have babied my mom and would have therefore forced her to be more independent and make better decisions about her failing (but very fixable) body. And the list goes on....

So sorry that you have suffered so much loss from being a CG. You can rebuild your life. It will take some time, but you deserve it.
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anonymous979634 Nov 2019
Thank you so much. Hindsight is 20/20 for me, and I suppose for all of us. I appreciate you sharing your thoughts. It helps me deal with my own.
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