Recently I posted on the topic of "Why caregivers are so tired". This is a sort of follow-up to that.
Last week I called a member of my husband's family. DH's father also has AD, diagnosed several years after DH, and is cared for right now by one of DH's brothers and his wife. The family member told me that she and her husband and DH's sister and her daughter had flown to the old home town to work on the father's house, give the caretaker brother and his wife some time off, and pitch in to work on all the paperwork to get the father admitted to a nursing home.
After I got off the phone, I sat down and cried. Who do they imagine does everything here? Our fairy godmother? Who do they think works on our house, or does the Medicaid and other paperwork, or all the daily care? And they never even call to see how DH is, or to ask if we need any help of any kind. As for time off, in the last six years, I've been away from home for a total of three nights, but since I was in the hospital those three nights, it wasn't much of a break.
I sat down and wrote a very emotional letter—three pages, single spaced!—to DH's family. I didn't think I'd ever send it, but it did make me feel better to write it. But maybe it would make me feel even better to send it. We are starting our ninth year since diagnosis. Maybe this "anniversary" would be a good time for a letter like this. I was afraid that if I sent the letter, DH's family would get so mad that we'd never hear from any of them again. And then I wondered in what way that would be different from how things are now. At least a letter would make it a little harder for them to ignore the situation here.
Oh, Jan, how sad. What have they said in the past when you have asked for help? Most of us have found that people don't OFFER. We have to ASK, specifically, for the help we need. I hope you are able to get some assistance.
First I would reread the letter you wrote and if you think it is unfair in anyway then rewrite it. But if it just pours out your feelings then mail it and let them see the anguish you are facing. If they aren't really in contact now you have nothing to lose. Sometimes I think people feel that if the spouse is there to take care of the person with ALZ then all is well. <<<hugs>>>
I wouldn't send the emotional letter. I would give yourself a few weeks to think it over. And then write a letter that is heartfelt - not emotional - and ask for help. Who knows? Maybe they'll say yes...
Jan, have you directly asked them for help? Most of the time people are willing to lend a hand, but in most of our cases we put up such a good front that people don't realize that we are barely keeping it all together.
i think its as phil4 has said. if its a spouse doing the caregiving they are the ones designated for the job. i believe the concensus would be if its your spousethats ill in any disease, its what sorta goes with the marriage vows. in sickness and in health so most would think its part of the marriage and feel they should have no part in taking on that responsibility from the well spouse. and for me, if the offers dont come from them then i dont believe in asking. i dont want anyone doing us any 'favors' that dont come from the heart. of course that way of thinking has also left me 11yrs and running with not one offer from his side of family.
Don't send the letter. Least said, soonest mended. I think that once they have a chance to think about it, they will know and appreciate what you've done. And, once this is all over, you may find they will be your staunchest supporters. It will be lonley afterwards, and family can mean a lot. I know that doesn't help your fatigue now, or feeling of lack of appreciation, but we know and appreciate, what you're doing. Look up all of Carosi's posts to find ways on how to conserve your energy and ways to ask for help.
I know exactly what you are talking about. My hb's and my family has refused to help in any way. Neither family has ever called to see how my hb is doing. My hb's brother is financially secure and has the means to send my hb a few dollars for meds. I have been the sole supporter for three years and I am the only one taking care of my hb at home. I have no one to help. I haven't had a break in years either. I'm mentally and physically tired but I have to go on. Take care of yourself and good luck.
Jan--I have an idea. What if you said your doctor has ORDERED you to get a break for your health, and you need coverage from his family. Leave the emotion out of it--it is clear that if they had wanted to do anything to help you, they would have offered by now. So I don't think an emotional appeal is the best way; just be matter-of-fact and say that your doctor says you cannot continue caregiving unless you get a break, give them an amount of time, i.e. a week, and say it has to be soon.
I may be cynical, but I wonder if in the case of your husband's father, there is any expectation of an inheritance. Perhaps that's why relatives have been responsive in his care, but not in your husband's?
Jan , I hear you loud and clear! If it were not for my bil who comes up from LA every couple of months to visit and do things with my hubby, I would have no one who even begins to understand..to let you know how good he is, they have a sister who also has AD, and she has 4 kids..she is in the NH and those kids live a life like none other..just got a postcard from one of them in Spain on holiday now and the other is always on hiking trips somewhere...the other two are out of state and come when they can..but the ones here have another pretty care free life...but my bil God love him, makes it a point to see the sister and another brother in a NH who is diabetic and blind..in other words this ONE bil goes out of his way to try to help out where he can....one sister who is well will call now and then and stands by " if you would just take him off all those meds and have him take vitamins he would get his memory back"... However on my side of the family, not one ever calls to see how he is. My brother's wife is battling lung cancer...unless I send a message or note asking how she and they are doing, there is not one word coming this way. My sil and I do write but she does not dwell on her disease and so we talk about her new grandson and a few things like that..but they don't ask about how I am coping with this nor to they ask about dh... If you were to send that letter I don't know what bridges you would burn...it almost makes me think THEY think YOU should be kicking in to help with the dad...yet they are willing to grant the other caregiver a break..Maybe they think your side of the family is pitching in..do they know otherwise? Maybe they would be able to help if they understand no one on your side is there to help you with him. Just a thought. But I do know how you feel.