I posted this as a comment to an article, but decided to post it here in the forum instead. So, apologies for the double-post.
I've recently relocated to take care of my mother after my father's death last year. She's not ill other than what appears to be some type of approaching dementia. Really it's a continuation of a pattern of dependence she's had for about 40 years. I feel so resentful and so guilty for being resentful I am not even fifty years old and this was the time I was supposed to be rebuilding my life. There is a small window of time to put my own life together, to build a career and find a significant other, but I am stuck in this town taking care of her. Ostensibly due to finances, because she was left with no money (mostly just bad choices) and now I am living with her to help support her. I cannot leave because she will not be able to support herself. I am rebuilding after medical issues myself and so I do not have the money to buy her a place. Maybe at some point I will have the money to move out and still support her.
But she is also showing signs of dementia and so even then I would not be able to move out of state because she needs to be looked in on. I am an only child and have no other family. I have compassion for her that she has been left in this condition, and would not abandon her, but she is needy and emotionally dependent and often like a child and I feel only resentment. This is a lifelong pattern that I would call emotional blackmail, except that she appears to have some real problems handling things.
I was hoping to move two hours away to a larger city where business might be better (my hometown) but she insists that she must follow me to any city that I move to because she does not want to be alone "in case she gets sick." Even though I could come up a few times a week and check on her.
I have moved into my father's old room and now have to take over his role of driving her to the grocery store and doing basic tasks and listening to her go on incessantly about mundane household things and childlike comments about the squirrels. This should be delightful but really it gets on my last nerve. She was agoraphobic for many years and very rarely leaves the house; when she does, it is usually accompanied by an anxiety attack and I have to go with her.
She worked on me for about a year before I came down here and living with her was out of the question, but after I got down here, it was clear that it was the right thing to do. Apparently I have always been her retirement plan - she thought that she would live with me, just like they lived with her grandmother growing up. No one told me. This is a retirement town and a number of her friends have been living with their mother into their 90s. This is horrifying to me although it appears I have been assimilated.
I had only a few years ahead to build a career and find a significant other and that is probably gone now. I am trapped here and will probably be released from this just when I am old enough to get a few cats and look back on a life that didn't happen. That said, I am trying to cultivate gratitude for this time with her, compassion for her situation (I do have that), and am trying to be the best steward possible of the time we have together, and trying to zip my mouth and not let my anger come out at her because she is really not capable of coping right now, try as I might to get her to carry in her own grocery bag.. That said, I resent this but do not want to look back and be someone who did not step up. But it sucks, it really does. Reality is that it's about her and it probably will be for the rest of her life (and the rest of my productive years). I always did like cats so maybe I can rescue some from the shelter before I die.
Selfish attitude? You bet. It's ugly. I'm trying to be a better person around this but so far have only a small bit of success. I wish I could be one of those saintly types who loves taking care of the elderly but it's just not there. I did not have children for this reason and now I have been given a special needs "child" to care for. I wish I could simply say, my home is your home (except I don't own a home, but you get the idea) - that is how it should be. I always thought I was a good person until now and I am bitterly disappointed with this selfish response. She's like an open would laid out, and if you resent it you're kicking the victim - this is the dynamic but now it's worse because she really is missing a few marbles.
My life is over but I should be honored and grateful to be able to be there for her. So far, no joy on that one but I'm working on it.
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There are some benefits to being in this sleepy town though - it's quiet, the cost of living is lower, and it's seductively easy to breath a little and not have to fight the world - but from a business perspective, letting the world pass you by is deadly. It's very easy to get lulled into laziness. And the opportunities here are fewer as well.
Regarding the health effects on caregivers, one can only imagine. Cortisol? You bet. I've been swallowing that cortisol with bowls of ice cream and trying not to engage. (Thankfully for the most part, it's peaceful). I went to bed angry after a confrontation last night - tried to back out as quickly as possible but it wasn't soon enough), journaled to release some of the adrenaline, but could feel the toxic cocktail still in my system this morning upon awakening, well mostly just the tiredness and after-effects of it.
I wonder if it would be different caring for a spouse because of the diffferent dynamic? Not saying it would be, but just asking the question out of curiosity. Because you choose to be with a spouse (unless this person was an abusive jerk who kept you there under threat or who you don't love and just marrried for the money). But I've been in love, and had to see this person through some rough medical times, but it was very different. It seems in the case of a person who is younger, caring for a parent, you didn't choose the parent, you didn't ask to not have siblings, and perhaps this parent was a saint and the one you looked up to, but often some parents were abusive, toxic, rude or needy and use emotional manipulation and guilt to get you in their claws. Now my mom's not that bad thankfully, just difficult, and most of the time we get along, but It's easy to see where some people would be tangled up with toxic family they would otherwise not want to be involved with. Do you think it's different with a spouse, when one has elected to be there and promised such? Not to minimize the frustration and resentment that some people may have experienced at a particular situation. Also, the above point that they are probably a similar age - if two people are in their 80s, at least they have lived their life. Whereas if you become a caregiver at 35 - whole different story.
Regarding the relationship aspect of things referred to earlier. Yes, I don't plan on dragging partners home to mom's for an all-night romp. LOL However that is a part of it, there is a privacy aspect of just being able to live your life that disappears when you are a grown adult in someone else's home. But it's more about the bigger parts of that - why would someone want to get bound up with me where I"m trapped in a caregiving situation? What are they going to do, move in with me and mummy? I want my own life, a partner, a home, maybe even a cat. *grin* It's about autonomy, living your own life, being able to build something on your own. If your life is captive to caregiving, you are not truly free and available to build a life with someone. That said, of course mom comes first, but really?
I think also that one of the problems with studies with those kinds of conclusions is that so many situations are different. One of the women I know who cared for her husband with AZ did for for something like 10 years if not more. He remained in their home, was bedridden and noncommunicative for the last 3, but she managed with the help of in-home care.
Another was a man who cared for his wife at home until she became combative and physically violent, at which time he sought institutional placement.
Both of these people wanted to care for their spouse, and I think saw it as an opportunity to share their last days and make something better of them than might otherwise exist under the circumstances. They also had strong support from friends in their religious circle.
I think so much of it depends on attitude. Those who feel trapped and resentful are probably going to be more stressed and more likely to suffer physical ailments. Those who see it as a challenge or duty will probably not be as affected.
Another interest aspect to explore is the effect of cortisol on caregivers. Sometimes what I find scares me, but at least I have some idea what might be on the horizon and how I can avoid it.
Again, I hope I didn't offend you with my less than tactful suggestion.
I have personal experience with only a few people who've cared for someone with Alzheimer's, and they've both outlived their partner.
There are some interesting facts about the effects of caregiving though. Years ago I did some research, which was unsettling. It addressed a higher level of IL-6 in caregivers, equivalent to what the level would be in persons much older. It's a complicated issue so I won't go into a lot of detail on the effect of IL-6 on health.
If you're interested, check out this symopsis: http://www.ncbi.nlm.nih.gov/pubmed/16960028. Read the first paragraph. If the Admins delete the link, Google "IL-6, caregiving."
Here's another study synopsis: http://www.ncbi.nlm.nih.gov/pubmed/20808097. This one also addresses the ability of the caregiver's "self-efficacy", apparently a medical term for various aspects of coping skills. This was a very limited study, however.
I and I'm sure many others here can tell you from experience though that caregiving of anyone is going to lead to changes in health and challenge coping skills. But we have forums, which our parents and grandparents didn't. They just did what they considered was right, probably without much support and certainly not an online community of people in similar conditions.
But I think it's good that you're concerned about this so you can take preventative measures.
I know I feel resentment, big time. When my parents were my age, Dad had already been retired and the last time Mom worked outside the home was in 1946.... once retired they were traveling the world, eating out, going to the movies, taking the subway into Washington DC to visit each and every historical site. Neither of my parents had hands-on care of their own aging parents because they lived out-of-state and had siblings who became the caregivers.
Last year my Dad said it was time for me to quit my job to spend more time with them. So, I asked my Dad if he resigned from HIS job to care for his parents. I knew what his answer was... it was *no*.
With my major health issues that popped up since dealing with my parents [even though they still live independent] I will never enjoy a retirement like my parents had. In fact, there are times when I actually believe that my parents will out live me. I should be enjoying my parents company, not trying to avoid it.
If you can get your mother into a retirement community, it would be great. Some communities are subsidized by the state or federal governments in the US, so you can get a nice apartment for a cost your mother can afford. I hope you can find one. My hubby and I used to live in one that had some subsidized 1-BR apartments in TX. They were nice -- perfect for seniors -- and provided social outlets.
About social things for us. I'm 62 and I'm surprised there are still men out there interested. I always heard that no one wants a woman after a certain age. Apparently these people were only asking younger men. There are many older men looking for companionship, and they are not looking at the younger women. Well, actually they are, but only 5-10 years younger. There are a lot more men 60+ now, many who are divorced or widowed. They're out there, so that is no worry. What "they say" about older women finding someone has not caught up to the reality of change in the number of seniors without partners. (I ran into one that seemed near perfect the other day until I learned he loved to dance. I have four left feet -- terrible dancer. And he doesn't like animals. I'm an animal person, so we were doomed. But it was fun imagining he could be Mr. Right.)
When I get old, there will be no children/siblings/whathaveyou to help. Wonder if that's when my karma will come home to roost.
I hope I go out earlier than that - preferably with some flair, like skydiving or something.
People live too long these days. I don't want to live to 90.
Then again, it's not all that long away really so it's not really that bad. Once you pass 50, you might as well just live it out - it does go fast.
Switching gears, do you think that as only children we just don't learn this? This whole family thing that others seem to get?
And as for the time and boundaries issue, yeah, I'm starting to set that now so it will be in place for later.
As for not being cut out to be a caregiver (can you call yourself that in my situation? I think so). - I really feel like what I should be is welcoming, homey. It should be, 'my home is your home.' Mrs and Mrs Walton would never have told Grandpa Walton to go buy a mobile home. She should feel like she cam come to me and be home. But I feel like an awful person for not wanting that. Isn't it normal to want to build your own life and home? And maybe help and be a support person? Assuming the person is capable of living independently with a little support?
Maybe it's just our selfish culture. They would never do this in India or China. Or Mexico. Maybe they have it right and our culture is lying to us. But I still don't want to live with mom or be a caregiver. And the thought of anything medical - ugh. I'm ultra-squeamish and could NEVER see myself changing a diaper. Ugh. Ugh Ugh. Yuck. Gross. Can't go there. Really.
But back to the point, I feel like a horrible person for wanting my own life, stuff, personal space, retreat. Is that healthy? Or not? Or is our culture lying to us?
How am I ever going to have a relationship living in the back room of my mother's house? Or have any independence or privacy with my life being held up to someone else for their scrutiny and commentary? It feels like a dimming of my personal identity. This just seems ... wrong.
Sometimes when I'm angry and have to work on my attitude I think I'll use a screen name of Clydesdale, or Mule, or something like that. Then I have to remind myself that I can't allow myself to accept that I don't have the right control what I do and don't do.
This is not an easy job and in fact other than court reporting it's the hardest job I've had.
I'd much rather be back in the busines world than traipsing around the county and sitting in medical offices.
I think it takes a special person to really want to do this and make the sacrifices; unfortunately, I don't have that qualification. But I still try to do the best for my father as I know no one else will and I can't get past the guilt I'd feel if I didn't.
My parents are in their 90's and still live independent away from me, but I still feel hijacked having to drive them to all their appointments, shopping, and get their groceries for the past 5 years. My parents tend to forget I still am gainfully employed at a career I love.
One day I asked my Dad that if the time came and he needed to hire a Caregiver and the agency sent over a person who had zero training, didn't know CPR, couldn't do a blood pressure reading, couldn't pick you up if you fell because of a weight lifting restriction, disliked housework, was a terrible cook, and she was close to 70 years old, would you accept that person? My Dad said *no*..... well, Dad, that person would be me.
I've been trying to get my parents to move to a really great retirement community where they can make new friends and not be bored like they are now.... where the community offers transportation so they wouldn't need to keep depending on me... and I would have actual QUALITY time to visit them, instead of feeling like an errand person. Any time I mentioned that, I get the look like my hair is on fire.... [sigh].... yes, I have a lot of resentment.
Time for me to go hug one of my cats :)
I am failing miserably as a caregiver if that's what you would call this. I am resentful, selfish and try as I might to curb it, it's coming out as passive-agression. If it is possible, living independently would be the best solution for us both. But from what you guys are saying this could be the cage lowering over me for good.
I saw a wildlife show sometime ago on a PBS station, and there was an otter that had become injured. He broke his leg or something like that. His little tribe tried to help him but shortly thereafter, abandoned him. The camera was viewing a lot of different scenes in the wild, and every so often later in the program we would see him, crying out, alone, by the waterfall, hoping someone would hear him, but you knew he was going to die there. It was really haunting. I don't want to be that family.
As for resentment I think that some of it comes from the fact that there are long-standing helpless patterns with her that are now just wired in and can't be changed. Really, I feel like she finally "got' me in her hooks. and i resent the hell out of it. I've been telling her for years that I am not going to do things for her that she can do for herself but often she is irrational and gets angry when challenged, then blames me because her blood pressure is up.
Regarding the moving situation, I don't want to give too much personal detail for reasons of identification, but I am absolutely sure from our conversations she would not be open to assisted living since she is still physically capable, or an elderly community situation although I wish she were.I completely agree that the interaction would be better for her but to her it would be 'the home.'
Financially she will need to move, without going into too much detail, and we are looking at some more affordable options and hopefully ones that have a social community so that may be a good mid solution. Whether she will utilize the community is another thing - she has one now and only partly utilizes it and she has not been responding to change well so I am concerned about handling the major change of a move, even close-by. I would love to move to the larger area but the affordablilty aspect may stop her as the cost of living is higher and she is on a very small fixed income. it would not support her in that area, and she wants to stay here anyway, but I'm looking into options with that though just to see what's out there.
It could be up to a year before any kind of move happens. I am hoping to be able to live independently at that point since right now my reason for living here is financial (really it's helpful for both of us so there are more sides to this). It's just frustrating. It may depend however on how things look with her issues in a year or so. I am not sure if I am dealing with a progressive dementia (my guess is, yes) or age added on top of general problems. And I dread the guilt trip that will be laid at my feet if I am able to leave about how she's lonely and there's no one to sit at the dinner table with and, oh, God, the guilt. Argh. Just an extension of hearing about every lonely holiday for the last 30 years, why can't I live closer etc. Kill me now.
Why should your mom develop other friendships or work on managing her fears when she can sit in her little cocoon with you meeting her every need? And that's not a criticism of you...it's just that I'm not sure that you're doing either of you a favor by playing into her fears/limitations and giving up your life and future.
I'd try to get her some help so that you can get some space and freedom to live your own equally important life. There are a variety of supportive living situations that might work for your mom. I'd start exploring them if I were you. Good luck and please keep us posted on how you're doing.
My resentment prevention/cure is to remind myself that I have a choice. We always have choices about our own behavior. My dear husband had no choice about whether to have dementia. Neither did my mother. Neither one of them had a choice about whether they needed to depend on others for their care.
But I always knew I had choices. I didn't "have" to keep Coy at home with me. I chose to. I never promised him I would do that forever. I promised him that I would never abandon him, and that I would always see that he had the best care. It was my choice to make that promise.
Of course, our choices have consequences -- often financial, emotional, health, welfare consequences. Sticking in the caregiving role may only be the least of the miserable choices open to us, but it is still a choice. To me, viewing it that way changes my perspective -- rotates me in that circle a little.
I hated the disease, and the disruption to our lives. I felt sad sometimes, and angry sometimes, but I don't think I felt resentful very often.
Realizing that we make choices also gives us rights to take credit. One a man in my local support group was explaining how hard caregiving was on him, but that "he had to do it." I said, "Wait a minute. You do not HAVE to do this. You aren't even married to your partner. You don't even have legal responsibilities. It is very clear that you are doing this out of love. At least give yourself credit for making that choice!"
I really believe that changing our perspective from thinking we have no choice to taking responsibility (and credit) for the choices we make can help reduce resentment. At least it helped me.
Although I might agree with her on the quit smoking point...but trust me, I get it, I"ve gained nearly 20 lbs in the last 6 months going to sugar to medicate the stress.
Thank you for your post - I would just edit it to make it a little less long, take out information specifics, and to also add that this is as much about frustration with my own life as with the situation here.
Alongside with all this stuff, there is also gratitude for being able to spend the time with her (when not being guilted into it) and grateful to be there to help her, and glad that she is no longer in the situation with my dad. I'm happy to offer help and support, just didn't want the price of that to be a total obliteration of my own life and future. I do want her to have a happier life than she did and hate that I'm not doing a good job of making her feel better. I'm trying but can't give her what she needs, namely me wanting this. Maybe that will change. But when the situations happen you just rise to it.
That's an interesting representation of changing your angle of perspective. I do try to do that and it does help. It's really the only thing that does (short of getting on a plane and going somewhere far away).
I am thankful that things are not to the stage where mom cannot be left alone. I see signs of what seems like a dementia, but don't really know for sure what we're looking at. It does seem to be getting worse as she gets more childlike and clingy. She gets anxious when I leave. I do see signs of approaching dementia - relying more on notes, forgetting things, inappropriate rude behavior, extreme difficulty learning simple things (although she is making progress slowly on those) , and just general out-of-it-ness. She is highly childlike although she always has been to an extent, and she has reported some minor what she would call spiritual visions and what I would call hallucinations. I have also noticed that her bottom jaw sometimes juts out a bit when she's tired and she has a general empty minded look. She is able to manage her affairs (bank accounts, bills, cook dinner etc, so she is not incompetent per se although I guess it depends how you look at it ) It is downright maddening to try to reason with someone who is being irrational. I did talk to her doc on the downlow and he didn't really do anything after her appt but I am going to give him another call to get more information.
Kazaa I know what it's like to be around the negativity because she's very anxious and loops on all of her problems (to some degree, understandably), she complains constantly about her health, energy levels, anxiety and so on. I have gotten into the habit of being here at the house too much and it's really getting to me. I can leave, thank goodness and need to do that more or at least retreat to my own personal space. I try to keep my private space here private and do our talking in the living room. Also to adjust my schedule to be up early before she gets up to have some uninterrupted time.
I have been looking a little into the 'emotional blackmail' suggestion and it definitely is relevant. I would put her dynamics in the category of 'self-punisher.' But not in the category of someone who does it consciously.
I don't know how to handle this childlike emotional dependence on a day to day basis. Being with her feels like a too-tight sweater that I can't peel off. I am smothering in her emotional needs and this is not an area I am good at. She does have some friends but really never gets out at all. and resists opportunities to do so. They do talk on the phone.
Sometimes it's okay here - we will watch a movie or laugh or have dinner and it's okay. It's not always bad and I am grateful to be able to help her while at the same time feeling trapped and smothered. If it's possible for those to coexist. This is the time in her life when she needs the most help and everyone has bailed on her and even though it is a challenge I won't leave her stranded.
Unfortunately, it seems there's not much that can be done about it except change our view of the situation and make respite plans to help keep a balance on things.
There are times when I became angry that I wasn't getting help from the family, but it only made ME upset and more tired and stressed. I finally realized I'm the only one who can change the situation, and that's through my attitude.
But by joining this forum and seeing all the problems others have had with family members, contributory or not, I'm now glad I don't have to share decision making with anyone else. It's a lot easier that way, even though it also means no support.
I've mentioned this before but I'll write about it again because it's helped me. I envison myself in the center of a circle, facing a certain angle. Sometimes that angle is a point of anger, sometimes stress, fatigue, exasperation - you name it. I'm the only one who can change the angle, by changing my perspective, and when I do I look for a place on the circle that's more positive and hopeful.
Sometimes I change it to a gardening angle, sometimes reclaiming my life, sometimes finishing my degree, but always something positive.
It's really helped me.
As to sacrificing and losing the opportunity for a career and/or family, you still have a lot of years left. I'm almost 70 and still plan to finish my degree when my caregiving days are past, and I also plan to ease into a cottage industry business that I've been considering for years.
The opportunities won't be as great - I'll likely never be able to work in an office again because of my age, but as a friend suggests: reinvent yourself.
Hope this helps gain a more positive perspective on your situation.
The last week im just so tired its not "physical" its mental im absolutely drained and cry alot wondering how long more can i do this?
Like you i will be 49yrs old in September and am living with mum for financial reasons five years now and i want out!
I had an bad accident five years ago and NOW the court date has been set for October which means that i will finally have to money to leave and kick start my life again.
I have a sick feeling in my stomach now as "whats going to happen to mum" i just cant do this alone anymore and family are "hateful".
Mum will get a carer to come an hour in morning and evening 7days but she cant be left on her own so what on earth is going to happen i just dont know.
Yes im fulll of guilt but this caring with no support is making me ill and yes people say enjoy your time with your mum i wish i could but shes a very negative unhappy woman and always was and now add dementia and i feel as if i am "drowing in a bath of negativity" shes draining the life out of me slowly every day is it ok that i live like this? do i not deserve my life back before its too late?
Im so worried now as i feel this is my last chance to be happy as ive been through alot bad childhood bad divorce and yes time is running out for me.
I have to tell nurses and docs now and find out what help will be available for her but very little so my family will have to wake up now.
So youre not alone of course im glad ive spent this time with her but its hard to be with someone whos NEVER happy and just moans all the time.
I just pray that a solution will appear as ive had to let it go for now as its eating me up to stay and have a life which may mean mum going into a NH or stay and crack up?
Big hug its a horrible place to be!