Sometimes I wonder if I'll ever be able to be happy again without this feeling of shadow over me. Always knowing that whatever happiness or ease I find in my life that I'll always feel guilty for it because my mother is suffering and will be until she passes which could easily be over a decade from now. Every now and then I will happen to have a good day or even good news and it's almost inevitable that my mother promptly has a crisis or some new misery to ruin it.
It almost feels like my life is already stolen, not really mine anymore and I'm long-distance from her for now but that is soon to change. I'm finding it harder to manage things from a distance, so one way or another she will be local but I plan to never live with her or I'd go crazy. Maybe I'd feel different if we'd had a good relationship up until now but we definitely did not. No matter how many services I arrange or how many professionals I put between me and her, I'll never be free of the responsibility unless I leave her to the state but the guilt would kill me.
How do the rest of you manage? Are you able to maintain any real happiness in the face of all this endless illness and decline?
No, I do not enjoy caregiving. I've never liked it and here I am, 24/7. It's hard, Sunnydreams, to be happy as a caregiver, unless maybe your mother was your best friend. I do hear people say that all the time. I have to realize that isn't the case for me, never was, and never will be. I just try to get away and have a little joy. Good luck in finding some.
My dad is 86, has been living with me and my husband since 2002, and has always been independent. He was a professional driver and still plays pool at a championship level. My mom passed on in 1986.
Only recently has my dad been displaying need for certain kinds of assistance -- i.e. finances and medical. The past month and a half have been a blur of VA doctor's appointments and hospital stays for a variety of things. There was even some dental work early last month. There have been two nosebleeds, one requiring EMS. I give Dad nightly injections of an anticoagulant (for DVT). He has an enlarged prostate, and is being treated for depression.
Suddenly, my focus now includes his well-being -- making sure he gets his morning and evening meds, eats and drinks enough, gets to the doctor, and other concerns. My workplace has been very flexible, thank God, and since I have no children, I am better able to devote my time and effort.
Can a caregiver be happy ... I've been wrestling with this one. I have already decided upon what I can and cannot handle, which areas of my life must remain unchanged (need job, need activities, downtime, etc.).
I have vacillated between being hopeful and encouraged and balanced, and feeling despondent and filled with dread. Every day I wonder, "how is Dad doing at home?" or "will his depression keep him on the couch today?" When I'm at the office, I can somewhat relax. When I'm home, and I go downstairs and he's in a bad way/feeling horrible/wanting God to take him, I feel completely powerless.
And the kicker -- things are still relatively manageable! I cannot even think about the future.
At this point I am learning how to separate Dad's needs from my own, and trying to maintain an emotional balance. I refuse to entertain any sense of guilt because that is unproductive. I have assumed a lot of responsibility over the past couple of months, and I realize that I am just one person. My husband is a wonderful soft place for me to fall.
I CAN be happy, at times. It's an ongoing challenge and I am learning how to navigate this new role.
Thank you all for your perspective and what you are teaching me.
This woman has been dying since Aug. to the point of having the family gathering and the crying and all about 5x's. I've had Hospice since Nov. She has been in respite care for a week for extreme anxiety, aggression and hallucinations. And now is her old self again. Selfish, cruel, greedy, lazy,etc. and isn't affraid to tell me and whoever what a bad caregiver I am. I asked her why this evening and her response was something about the corner of her blanket and I said "I fixed it" and she said I know, I said,(and I know better, to keep my mouth shut) "Oh, it wasn't fast enough".
I like how you point out about not getting credit when things go well. I'm not looking for credit, but it sure would be nice if it were in the picture.
So she had me call my 'Golden Child ' brother who she has signed everything over to (that reminds me she accused me of taking control of all her money, this evening) to come as soon as possible, as she wants to go to a nursing home where she can get proper care.
And Blah, Blah, Blah
It's all about control. Right from the begining. And I like the part you say about revenge on some percieved slight. I think it's got something to do with my relationship with my father. He died in my arms. I came hear to care for him because she was (in my eyes) abusing him. Maybe she feels I took better care of him. Who knows. Then your very last statment. She would not want anyone else to care for her, after all, on the good days, she says I'm a 'good waitress'.
All I ever wanted to be was her daughter.
Tonight I am happy, so I guess you can be happy. Why I am happy, I don't know, but I am. Earlier today my nerves were jangled. I look for what I call pockets of peace in my life. The past week I have been through a pile of emotions - up, down and sideways. Do I live in the land of "happy"? No, but I visit it when I can. Sometimes it is stroking my tabby and hearing him purr. Sometimes it is achieving what I want when I prepare a dish for supper. Sometimes it is feeling good about a new haircut. Sometimes it is being on the computer and listening to good music.
Being a caregiver is very stressful and I find I have to look for/create these pockets of peace. I can't hold my breath waiting for it to end. I have to live now. Time moves on and if now isn't good enough then it is time to change something.
My mother is suffering too - with paranoia, but I didn't cause that and I can't fix it. I can try to get her the help she needs, I can cooperate with the professionals, I can agonize about the ethics of concealing meds that she doesn't want to take, I can take whatever action I see beneficial, but - what I can do is finite, there is only so much one person can do for another, there is an end to it. After that, let it go and get on with your life.
There are crises and there are crises with narcissists. If the crisis is life threatening, by all means do what you can. If the crisis is that she can't get the right brand of toilet paper, let it go. You will never stem the stream of crises. It is how she functions - or dysfunctions. It really has nothing to do with you, though it affects you deeply. If you get hit by a bus tomorrow she will carry on as she is.
So why do you feel guilty? You have done nothing to cause her to suffer. You are doing what you can to help her. You cannot live her life for her. Whatever suffering she has is hers to deal with. You can't take it away. Because she is suffering, it does not mean that you have to.
My friend that died at Christmas taught me a very good lesson. Her husband was in hospital dying from cancer. They had been an item from Grade 2 and were very close. Yet, every morning she took time to read her newspaper, and then join the girls (her support group) for coffee and often breakfast. She turned up at the hospital about noon. I was staying with her during this period, and one day she said to me, "I know Rod (her husband) would like me to come in the morning, but I need this time for myself."
It had nothing to do with her love for him. They were a very solid couple. He had a need and she had a need and they conflicted. She choose to take the time for herself because she felt it was essential for her. Perhaps he wanted her there, but it really was not a need. She went at noon daily and stayed well into the night, at times all night. But she also looked after herself,
I am going to suggest that you do the same. Any narcissist is a bottomless pit of needs and wants. Deal with the ones which are, in your view - not hers, legitimate and worth your efforts. Also plan good things for you and don't let her crises spoil them. Don't even let her know about them as she will try to upstage you. It is the nature of the beast. Work on stopping obsessing about your mum, letting go of the guilt and focussing on yourself and your needs. You deserve a life too. Take a ten minute break from thinking about her and do something you enjoy. Then take a 20 minute break and so on. Finally allow yourself a limited period of time daily to worry about her and then let it go and do things for you.(((((((hugs))))) I know it is hard but it can be done.
Unless someone has a condition that caused them to mentally change, most loving, caring parents would never ask you as their child to sacrifice your own life, time, career, family, etc in order to be a caregiver. Not say a parent who asks for some help is a bad person; but good parents/patients keep in mind what is reasonable to ask and what is not. They would never blame you for things that happen, and they would never take your help for granted.
On the other hand, parents/family members/etc who have been selfish, cruel, greedy, lazy, etc all of their lives will continue to be those things and demand that you forfeit your life to cater to their every desire. These are people who spent a lifetime learning to manipulate you, and do it shamelessly. For these people, nothing is ever good enough, and they aren't afraid to tell you and everyone else what a bad caregiver you are. To them, you are the one who should be responsible for any problems, and if things go wrong you are the one who takes the blame (while never getting any credit for all the times things go well).
Most of us, I think, are in that latter category, and it sets the mood for a very unhappy situation. I've seen parents and patients who start off lazy, and just view a caregiver as a servant. Even worse, I've seen people who do things to make the caregiving job harder because they want revenge on the caregiver for some perceived slight.
I've also seen some good patients/parents who try very hard to ease the burden of those who care for them. They are the ones who try so hard to maintain control of their lives, and often they can graduate from even needing a caregiver.
These are just my observations, and I know it's never quite that black and white. Still, I think many caregiving situations are just built to cause unhappiness due to the type of person who would want (not need) you to wait on them 24/7.
"Happiness" was such as pregnant word and an elusive state when I cared for my mother. I think the only times I was happy was when I made fun of myself after those brainless moments.
neighbours (ideally appoint one as emergency point of contact, and make sure they have your number, too)
doctor
local social services (ideally she should have a key worker, whom you clutch to your bosom like your oldest friend)
local ER
Consider getting her a panic button if she hasn't already got one. Any service will help you identify a list of priority contacts depending on what the emergency is.
Hope this helps for short-term peace of mind until you've got her safely moved. x
PS More pie for fun things! Meditate, read a funny book, take energetic exercise - whatever gives your mind a rest.
Thanks Countrymouse, that makes a lot of sense my responsible adult and inner child are definitely in great conflict. I definitely will be thinking about what choices I do have that I can make. I find it hard not to think about the situation with her all the time (so my pie chart is wacked) because right now it's in that phase of waiting for something to happen before I can act.
Hi Debralee, yep strange isn't it that your caring and responsible nature has earned you first responder status even though you'd not choose it. And even just constantly hearing the complaints and dumping of negative emotion during every single contact even if there isn't a crisis is wearing. I'm glad you've managed to get some distance - I'm not sure how to get any more distance without being unable to know what is going on and help her when it's needed.
It's not quite as simple as that. I think: you can be as happy as a caregiver as you can be as a person. Which for many - most? - of us means, not necessarily that happy.
The added complication of caregiving is that it often - especially in your circumstances, Sunny - brings us into direct, involuntary contact with one of the key sources of common difficulties: our parent. And not just our parent, but our parent in need, our parent suffering, our parent as an individual separate person whom we have to look at objectively, as well as the mother we owe, or don't owe, reciprocal loving care.
So that at exactly the moment where the responsible adult in us in trying to work out good practical solutions to provide this individual with the best possible quality of life, the remembered child in us may have a radically different set of emotions towards its parent - which form a separate problem.
It's no good saying firmly "this is not the moment to address your issues." True, your parent is most unlikely to be able to help you with them, so in that sense it's futile expecting him or her to respond. But at the same time the presence of your parent in your life is forcing those issues to the surface, so it's equally unreasonable to expect yourself to put them completely out of your mind. They're right there, you can't just ignore them.
Hm. Once, as a junior doctor in ER, my ex-husband was required to treat a terrorist who, having shot and killed his target, had been shot in turn and injured by security personnel. My ex had no warm feelings towards the terrorist's cause, to understate it by some way. He managed to detach, and the patient lived: it was one of the things about him that I most admired. But, extreme as his experience was, he didn't have to practice emotional detachment 24/7 for an indefinite period; he didn't have to keep it up without knowing, even, when the end would be. So, how's it done?
Search me. But I know these help a bit:
It feels like it's overshadowing every aspect of your life; but actually that's up to you. Peg Bracken quoted the Bible in a domestic context thus: "when you cook, you cook. When you clean, you clean. Sufficient unto the time is the evil thereof." So: when you're dealing with your mother - administratively or hands-on - you're doing that. When you're off-duty, you're not. Take and enjoy your active off-duty time; don't spend it on worrying about your mother while someone else is responsible for her (and I'm a fine one to talk!).
Remember and enumerate the other things in your life that matter to you. They are still important. You could even do yourself a pie-chart of your time and thoughts: your mother might have the biggest slice, but there'll be plenty of other slices too. I am a full-time caregiver, but I haven't stopped being a rugby fan, a mother, a keen reader and an incorrigible shouter-at-the-radio during political discussion programmes - so I seem (to my surprise) to have quite a lot of mental space left over from thinking about my mother's needs. And that's not counting the time I occasionally devote to wondering what the hell's to become of me once this is all over...
Statistics say you are likely to be the survivor. When that day dawns, you will have done the best you could. Don't store up failures to feel guilty about. Learn from mistakes, learn what characteristics in your mother trigger your anger and avoid bringing them out, learn what needs doing because it makes a difference and what you're doing for form's sake - figure out what really matters and what you can drop. It's an imperfect world. Why should you have to get everything right?
I personally have found that correcting my mother's caregiving faults (I'm sure I make different mistakes instead, I'm not claiming sainthood here!) makes me feel less sore about them. I don't ignore medical symptoms. I don't dismiss her fears. I attend promptly to her comfort. I tell her, aloud, that her wishes and her happiness are important, and that she no longer needs to justify her existence. And, do you know, it's as if every time I'm crossing off a historic problem. Not only that, I feel as if I'm also correcting the even older abuses that made her so ill-equipped to look after anyone else - including me. It's surprisingly comforting, and not in an "aren't I superior" way - in a "this was wrong, that's better" way.
Sunny, of course I have no idea what your issues with your mother are, let alone what their roots were. Maybe, if you feel that your mother is actively culpable for example, caring for her is going to prove literally impossible. Take your time thinking it through. Remember you can ensure her care without actually doing it: that does NOT make you a bad or uncaring child, merely one who's had all she can take. In the end it's only your judgement that counts, because it's only you who really understands all the factors.
I conclude that caregiving in itself doesn't affect your ability to be happy. The problems it adds are the lack of choice about having the moral responsibility, which you can't do anything about; but then the question of how you fulfil it, which you can. Choose the ways that are right for you.
Hopefully one day I'll again be able to break that shell and find my sweetness again!
My mother is in her 90s and often in physical pain and also suffers from dementia. That certainly does not make me happy, but I am happy to spend some time with her. My relationship with her does not consume my whole life.
I think one factor here is that I never felt responsible for my loved ones' impairments. I certainly did not cause their dementia, for example. I had absolutely nothing to feel guilty about. And I didn't/don't feel guilty.
Perhaps more importantly, I had a good relationship with these loved ones. I knew that if our situations were reversed, my husband would do his utmost to take good care of me. I took satisfaction in protecting the quality of his life. I love my mother, and she was nurturing, caring, and loving toward me.
Sunnydreams, perhaps with help you can get off the guilt treadmill. How can you feel happy when your mother is suffering? You can separate your own feelings from her. Surely you won't be happy BECAUSE she is suffering, but what good does it do her for you to be unhappy? You do not cause her suffering. You have no reason to feel guilty for it. Did you mother do a thorough job in installing some guilt buttons? Is that why you can't be happy now? Whatever the underlying cause, I urge you to have a few sessions with a therapist who can help you give up the unnecessary and unproductive guilt.
You can't go back and change the nature of the relationship you have had with Mother. But you can change how you view it, and what you do in relationship with her now. Again, a trained and objective outsider can help you will this process.
I think that the shadow hanging over you is not just that your mother is sick, but that you have never had a good relationship with her.
You do not have to "leave her to the state." Other caregivers have managed to distance themselves (both emotionally and physically) from their abusive, neglectful, or narcissistic parent, and still manage to see that they get good care.
Best of wishes to you as you struggle with this. You deserve some happiness.
But then there are grouch-pusses such as me. Nuff said. :)