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lola64

Member
Joined
Oct 10, 2007
Messages
20
Diagnosis
06/2007
Country
CA
State
Newfoundland
City
St. John's
Hi all,
First, I wanted to wish you all a Merry Christmas. I hope everyone has a happy, peaceful holiday season out there.
I have a question.. and a few comments about caregiver burnout. I think my mom is finally there. The short version of the story is this.. dad has been diagnosed for almost 3 yrs now. For the majority of that time, I've been helping out however I can.. helping relieve her, to feed, move dad, etc. etc. Recently, I had a back problem and had to give myself some 'time to myself'.. I was becoming burned out at work, my boss was complaining about my mistakes, my personal relationship was very strained, I was moving into a new house, just outside life really. I had to reduce some time spent with my parents.. to 3 or 4 times a week visiting and shortening my stay. She was still getting out when she needed too.. but I guess my mom has taken this very personally and has now turned completely against me and my partner; ripping at me that I am 'never there' to help, etc. etc. That she will 'never ask me to do anything for them ever again, that this time next year Dad won't be around so I will have nothing to complain about anymore...' No logic really. It just makes me feel horrible and guilty. I understand she is scared. That she is tired. But I have been the only family member that has stuck by them this long. But she makes me feel so much guilt over every little thing. I cannot be her doormat any longer. Now she has blown this completely out of the water. And my poor Dad will be the one to suffer from it.
SHe has a long history of emotional instability. I have been worried about her mental health from day one with this caregiver role.. however, they both refuse to no end outside respite care, support groups, etc; they 'expect' that their grown children should be there to cater their every whim. And I agree.. to a point. We should be there to help. However, their expectations are very very demanding.. ,and even when I WAS there all the time, nothing is ever good enough. I finally stepped back for a bit for my own stability and now I will reap the emotional backlash.. for being there for them the whole time? Ugh. Anyone have any advice? Just words of encouragement? I just need something to keep going.. advice how to get some inner peace in the middle of all of this torment. I cannot lose another personal relationship, my job, or my inner sanity for their illogical unreasoning.
Heavy times friends. Thank you once again for listening to my rants:)
 
There have been a couple of threads lately that I could have posted this so I hope you don't mind, Lola. Perhaps this could help you & others.

I came across an interesting article about Compassion Fatigue. I know this has been mentioned before, but thought it would be of relevance here.

It states that anyone taking care of the elderly, disabled or chronically ill loved one knows that it takes superhuman strength & patience- and loads of compassion.
Given the constant demands on your time & energy- for months or years on end- as well as the stress & frustration involved, having large reserves of empathy is crucial.

Yet as strange as it sounds, all that empathy can backfire, flooding you with the other person's pain, and leaving you exhausted, angry, even unable to care anymore.
No one likes to talk about these feelings; they seem selfish, shameful, indecent. They take a toll, however- on both you & the patient. And they're a growing concern among physicians, who have a name for what's happening: compassion fatigue.

The author of a report in the Journal of the AMA on this subject said about 6-8% of dr. & nurses suffer from it. Unlike burnout, which is caused by work stresses, compassion fatigue results from taking on the emotional burden of a patient's agony.

It is similar to PTSD, except that the stress is a reaction to the trauma of another. As with PTSD, symptoms include irritability, disturbed sleep, outbursts of anger, intrusive thoughts, and a desire to avoid anything having to do with the patient's struggle.

For the ordinary people who become caregivers, the most important way to prevent compassion fatigue is simply to recognize that it can occur. "It means saying to others,
'This is really getting to me, not because I'm weak or inept, but because it's a terrible situation.' "

Caring for yourself may seem like a low priority while trying to care for another- but it is essential for the patient. "Knowing that someone is crying for you and feeling your pain really is therapeutic."

Five ways to help yourself: practicing self-awareness & self-care can help you maintain your boundaries; this, in turn, allows you to be fully compassionate without being consumed by the other person's pain.

1) mindfulness meditation- decreases depression & anxiety
2) keeping a journal- reflective writing helps prevent compassion fatigue
3) a daily act of self-centering: set an alarm for 12noon & take 4 deep breaths; or when you wash your hands, sink into the experience, feeling the water on your skin while noting "I am worthy of my own time."
4) staying connected to the outside world with at least a phone call every day. Better yet, get outside, even just to take a walk.
5) don't be afraid to ask for help.


Food for thought for all of us!
 
PERFECT TIMING! Thank you Mare! lola64, we hear you-we are right here with you. :]
 
Thank you mare and indigo... I appreciate your article and your comments. I understand what my mother is going through.. however, I'm not sure where to go from here anymore. So many times I have tried to sympathize, help more, give her more breaks.. but she sees it as if I am doing less and less.. when really Dad's care is requiring more and more.. it is so hard to keep up with. She fights everything, every step of the way.. and instead of accepting some care, or making our house more accessible, etc. etc.. she is making it all even harder on everyone than it already is and I just feel at the end of my rope. The family is torn apart. What am I missing? Is there more that I can do? But I'm tired of being her doormat. I'm sorry.. it's just that this has been building between us for some time now.. the two caregivers and now we are pitting against one another. I hate where this is headed. I tried talking to her about it last night but it ended in a huge row and I had to walk away. Where should I go from here? Thanks again.. hugs to you all:)
 
I'm so sorry lola, I wish I had the answer. How upset would she be if you went ahead and lined up some outside help? I know you said they are against it but would they refuse it if you signed them up for it? Hospice which I know is a "dirty" word to some families can be a tremendous help. They pay for and deliver all medicines and home needs like hosptial beds, comodes, etc. You could possibly get her to look into Hospice just from a financial and convenience standpoint then take advantage of the inhome help they offer. Maybe if she can get the breaks she needs and can step away from the situation it would help her. Hospice is so wonderful and can be utilized for an extended period of time it doesn't have to always be just a short term thing.

Or what about going to a counseling session together you and your mom? Tell her how sad you are that you two are having problems and think it would help if you had someone help you sort it all out? Not everyone is willing to give it a try but if you could get her to go I know it would help her to sort through some of her emotions. I'm sure you know her lashing out at you really has little if anything to do with you. It is her frustrations with her situation, I know she feels exhausted, helpless, sad, there are so many emotions caregivers go through both physical and emotional. If your mom isn't interested, maybe you could do some individual sessions just for your own well being. We are taught so much in life via textbooks and lectures, but I have yet to read the one that tells us how to cope with LIFE. Counselors give us tools to deal with life.

We are all here for you to support you in anyway we know how. It's hard when life's answers aren't obvious.
 
Regarding trying to line something up for them.. just a story from personal experience: After my dad passed away, my mom (who had, shall we say, a bit of a drinking issue) suffered a couple of pretty bad falls. So my brother arranged for people to come in and help with housework, shopping, physical therapy.... she called and fired them before they ever set foot in the house. So you do the best you can, and try not to judge yourself through the eyes of others but know you are doing your best.
 
Hi again-

thank you again for your suggestions. This is where we keep hitting that large obstacle. My parents are of the variety to refuse outsiders from coming into their home at all costs. I have no doubt that if I were to go ahead and line up help anyway, they would not open their doors to let help enter. I have broached the subject numerous times, even made a list of available hospice options we could approach in our area.. every time, all hell (excuse!) breaks loose and the battle fails. It is demanded that everything should be coming from myself and my brothers (who no offense, have checked out and I understand pretty much why), and it is left on my shoulders to tend to. The old argument, 'why should we spend money on a stranger when I have three children who should be helping me' arises. But I have learned the hard way, that even when I go above and beyond, try to pick up the slack of my brothers, and do everything I possibly can for them, it still is not enough. They still want more. Expect more. I hate to sound like I am whining here, because I really will do everything humanly possible, but this is just ridiculous. I am building resentment; why should I go so far above and beyond when it is not appreciated, when they can't do things to help themselves, when I have sacrificed three years of my life and a long term relationship for them already?

It just feels so impossible and hopeless. I'm at a loss. I absolutely do not know where to go from here. To refuse help completely breaks my heart because it is my Dad that has to lie in bed all day thinking, suffering. I am currently 'on break' from talking or contacting them until I can get my head on straight again. Though this leaves me ridden with guilt as well. Christmas is here and I don't want to spend it arguing with them! Please help..
 
Lola-

Sounds to me like if they did not have you they would be lost. You are in the cat-bird seat and you don't know it. You are being manipulated (sorry) by your parents and your siblings. I know because I've been in your position with my mother and my brother (not ALS related, but health issues just the same). You are right to step back away from the situation. Take your time and perhaps your mother will appreciate your help when you can offer it. If not, it may be time to have a tough love talk with your mom in private. Try not to feel guilty and try to enjoy Christmas as best you can.
 
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