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I would like to give the Hallmark answer: cherished memories, rewarding moments, uplifting experiences. Unfortunately that has not been my story. I realize there are many that do have wonderful CG experiences and I’m happy for them. Sincerely. But as I near the end of this chapter, I realize that my life is an unmitigated disaster. I have no family relationships left, my friends have all faded away, I sacrificed my career, my own health is poor, and I will soon be homeless. And my adult children, rather than learning from my mistakes, seem to be taking on their own caregiving tasks. I can’t help but wonder if I’d demonstrated more self care then maybe they would be more diligent in practicing it.


Any regrets? Would you do it differently?

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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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Canoe63 Nov 19, 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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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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Canoe63 Nov 20, 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 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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Canoe63 Nov 21, 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 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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Canoe63 Nov 19, 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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The family suffers, spouse and kids. Friends do too, no time for friends or extended family. All are neglected. Plus the caregivers are neglecting themselves. Only person not neglected is the elder.
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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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Canoe63 Nov 22, 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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Hallmark is a commercial SIMILAR TO THE Hallmark Channel. It has no connection to reality. The toll it takes on you to be a caregiver in no way resembles the Hallmark brand. I believe all caregivers are heroes, dealing with the physical and emotional job... You work your heart out to give them quality of life. I did it for ten years with m.s.. Please, please care for yourself. The years do not come back.
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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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Canoe63 Nov 22, 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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Yes I would have done it differently. My mother lives on the east Coast and if I had to do over again, I would have moved to the West Coast.
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LittleOrchid Dec 3, 2019
LOL. You should have told me this 5 years ago, when we sold our house on the East coast to move to the West coast to help my sisters with Mom! Mom is still going strong, which is more than I can say for my sisters and I. We all have/need surgeries to correct back and joint injuries sustained while caring for Mom. Mom gets more and more disabled and can do ever less for herself, but she still has a strong voice when it comes to asking us to take on more.

I have told Mom very clearly and frankly that when she can no longer get to the toilet on her own or get from her transport chair into the front seat of my car that she will have to move into residential care. She is in denial and refuses to make any plans.

She has no money so she will be looking for a Medicaid bed. I have been equally clear with my sisters, who provide more care than I do. They may be willing to further injure themselves doing Mom's housework and laundry, but I am not. I see that as enabling Mom to avoid making the obvious choice to move into a care situation where these details are taken care of.

I have come to think that if a person is over 60 and an even older parent needs more care than a cheer-up visit and picking up a few things at the store the immediate response should not be "let me help you" but "let me help you find a nice place in a caring place where these needs will be met by someone who is trained to give care properly." We are excessively trained to "help" even if we, ourselves, are not really all that strong. Sometimes, for short term needs that is a good thing. Caring for an aging parent, however, is not the same thing as giving support and care for a friend who has spent a couple days in the hospital and needs help with making meals for a few days. This is a long-range thing that can go on for decades.

Indeed, move 3,000 miles away if at all possible and do the nice thing of calling frequently and sending photos through the internet of all the nice things you are doing so Mom can enjoy them vicariously.
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I was a caregiver to my mom for more years than I care to remember. It changed my life drastically and not for the better. It wasn’t because I didn’t care. It was the opposite. I cared so much that I neglected myself.

No matter what anyone says. Anyone! Caregiving is not easy. Ask any caregiver and if they are truly honest they will tell you that.

Yes, some people are blessed with lovely parents. But even with lovely parents, people are not perfect. They aren’t perfect. Caregivers aren’t perfect. Let me tell you that you don’t know a person until you live with them. Their true colors eventually come out.

Nothing is easy in caregiving. Like I said, even in the best of circumstances there are ups and downs so don’t believe the ‘Pollyannas’ in this world because they are portraying a fairytale life that simply doesn’t exists.

I don’t believe in sugar coating. I believe in speaking the truth. The hard truth that perhaps some people don’t want to hear or face but only the truth will set us free and truly help. Denial does nothing to help but causes so much harm to everyone.
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keepingup Nov 30, 2019
Amen. I kept so many secrets as a caregiver, making sure everything looked fine. When my mother passed, my own neighbors were shocked when they became aware that I myself had MS. If
I had let in a little light, a little more truth during those years, the process would not have been so difficult. All caregivers: Take the help where you can get it.
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