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Posted

HI everyone,

I am still sitting here in my hole but a little higher and need some advice. As I have told you my dad has been ill and though he is doing better he is not better yet. Both my parents are having a hard time dealing with his illness and the resulting being at home and change in their lives. My sister who has been great is also having problems of her own. The thing is that they try and not call me but yesterday things got bad and I spent a lot of the time on the phone trying to calm people down and think of plans and it was just bad. And I feel so awful. My sister keeps saying that my parents should move up closer to me but what can I do? If my day falls I can't go over there. I can't get out of the house. My husband is wonderful and does all he can but to add that burden???? What do you do when you are the one that everyone calls when things go wrong and you are having a hard time yourself. It is hard to because what little extra energy I do have some days I would like to have for Jim and I know it upsets him sometimes that they drain me so. But I can't not be there for them either. And to be honest it frustrates me because I think hey 9 years of dealing with this! And I don?t call them for crisis's. It just seems that I have no one to call on, they are all calling on me. Except you guys which I know! My friends do this too and I am so tired and having a very bad back slide right now. My mother now has shingles, she has to take care of my dad, their doctors are ridiculous (another loooooong story),my sister is trying to sell her house take care of her 3 year old and her ?husband?. Any advice? I guess I just needed to vent a bit but do you understand and can you help me deal with this all without making myself worse and still helping. Reading through this is it is a bit of a jumble but hope you get what I am trying to say.

Sorry for the cry of help again the hole I am in is deep but you guys and Jim are my light.

Stacey :-)

Posted

Stacey, wow, that is a lot to have on your plate. You should put a message on your answering machine that says "sorry, I am in a potshole right now and can barely deal with my own issues; please redial someone else!" Stacey, just my poor attempt at humor but I know when it comes to family that you must be very clear about what you need and in this case don't need. It is good that your dad is making improvements and I am sure that the changes in your parents' lives are hard for them. My guess is that although you have been challenged with POTS for 9 years, you have handled it in such a way that your family sees you as the "strong" one....and of course you are....but that doesn't mean they can put everything on you. I am sure they don't know where to turn but there are agencies that can work with families to help.

Learning how to say no to family can be very difficult and emotionally upsetting of course which just makes POTS that much worse. I hope you can help your sister and others to see that while they may be under stress at the moment, their stress will probably fade in short order, but yours will not. I think it sounds a bit selfish that you would be asked to have your parents move nearer you for the primary reason that YOU (and therefore your husband) will care for them. This does not in any way make you a bad person...the opposite....would either parent want you to become worse trying to look after them???

Maybe you can let your family know that you will be available to participate in a family discussion when you are feeling better and until then, ask them to respect that you need time yourself to get back to your baseline. I don't know any answers, but certainly sympathize with you over everything that is going on. I hope you can put yourself first until you are feeling better Stacey.

Take care

Posted

Dear Stacy, I'm sorry for all the trouble you are having. I too was the "rock" for my family and was always there for them. Now it is the other way around for me too. Though I still get calls to come and help with something, they have learned that there are days that I will say "no". And believe me, saying no was very hard to do. I was a great "yes" type person for years. Can you come to work early, stay late, YES. Can you help such and such do this, that and whatever. YES. Now that just isn't an option. Living your life at your pace is just as important as theirs. There are times you just have to say NO. I have found with time that saying no has become easier, is it still hard, yes, but easier to do than before. The trade off of being overly tired so that I can't do my own things just isn't worth it.

I hope for a quick recovery for you and your family through all of your troubles.

Blackwolf

Posted

Wow! that's a lot, Stacey. Here's what we had to do- in a similar- sort of situation.

Before Nicole had this last relapse- my husband had already been dealing with issues regarding his failing mother and it was getting more and more difficult on my husband. My husband's sister who has the energy of twenty people insisted that the mother not go into any sort of assisted living and she was calling on my husband to help in ways that required lots of time and effort- he was taking vacation days and thus using work time to compensate for where there was no assisted living arrangement. He works full time and has his own limits to the stress he can endure. Then Nicole had this relapse and this really consumed our time as you can well imagine if you have been reading our posts.

My husband has NEVER been able to say no- ever. But he finally had to. He told his sister that his own plate was way too full and he was also griefstricken and stressed and worried about Nicole and explained that he could not help anymore. He explained until the sister understood.

Eventually she understood and no longer called for help. In fact - sometimes now- very occasionally- she even offers to help us and Nicole while doing all the extra things for the mother. But recently- even she reached her limit and began to allow someone to go into the mother's house for several hours per day to help the mother. And on weekends - the sister takes the mother to her house to stay. Eventually the mother will move in with the sister- once an addition is built. But it was her idea to refuse assisted living for the mother and to take her in. My husband felt a great relief when he learned to say no. And to repeat- you've got to know my husband- he has never, ever been able to say no to anyone ever- he always pitches in. But he did say no and he feels fine about it now. He feels unbelievably relieved to not get phone calls to help with his mother. And by the way- he is a totally devoted son but he ony has so much energy. The ony thing he does is help his mother with all her financial things. Writes her checks and pays her bills and every Saturday he goes and gets the mail. This is stressful but this is what he can manage as there are so many extra jobs to do now that Nicole is here with us. He has to help me to help Nicole because I can't do too much because of my own chronic illness.

So anyway- you have so much on your plate, Stacey and you have to take care of you first and foremost. The bottom line is that sometimes we have to explain and explain until others get it even if at first you feel badly. But you mustn't feel badly or guilty. You are doing nothing wrong by being realistic about your own situation. You will find that by saying no- the other people will find a way to manage without you. Have faith in this, Stacey.

Take care,

Bev

Posted

Hi Stacey,

You and your sister should compromise on what you can do for your parents. Then look into getting outside assistance. Some cities have social service agencies that can help with the needs of senior citizens...bring food, offer transportation to doctor's offices, social workers, nursing care, etc. Call in the city that your parents live in (and also in your city just in case it becomes necessary to move near you) to see what types of services are offered. Also look on the internet for private agencies (try the AARP website) that may also provide assistance. In addition, the organization that provides information and assistance on whatever health issues they have may be able to offer some help. Religious organizations may also provide some assistance. Make sure any service offered is legitimate. After you see what type of help is out there make a long-term plan and a back-up plan (for emergency situations) for helping your parents. There may be things that come out of the blue, but at least for the most part your parents could be taken care of and some of the stress can be taken off of you. Sounds like a lot of work in the short term, but may be worth the effort over time. Hope there is something here that is somewhat helpful to you.

Etoly

Posted

I know this may not sound very "nice", but when I'm feeling awful, I've had to put a stop to the things that drain me further. I wont answer the phone if I know it's one of my more needy family members--I have to say, we're not rich, but the $ I spend on caller-ID pays off so much because I can see who is calling, and screen my calls. Particularly, I often wont pick up if it's my mother--unless I'm feeling pretty good--takes too much out of me even on a good day.

I hope you find a way to cope that works for you. <_< Nina

Posted

Geez Stacey, I think we have the same family! I'm so sorry you are going through this. My dad got hit by a car in April and because I was a nurse, I get all the calls for everything. I mean everything. I've even had friends calling me to tell me they were constipated, but then had an explsion and now feel much better. Okay, a little more info than I wanted, but if it makes you feel better, blather away while i watch little house on the prairie. <_< I know how hard it is to say no, and that you are too sick to help, but it's what you HAVE to do. Can you help anyone if you are flat on your back? Any energy I have goes to my little family here and I just tell my family that. They think I look "great" because I lost 50 pounds. It is totally lost on them that I lost it due to the inability to eat as opposed to trying to lose it. I finally just made it clear to them that I am no longer able to help them, not that I don't want to. There is a difference. Will there be hard feelings, maybe. But what that shows is that they are not validating you but expect it from you constantly. Not fair and therefore unacceptable. My family has become to come around. The ones that haven't, I can't do anything about. I have to take care of myself and my kids and hubby. They absolutely come first. There are days I feel guilty, but I have done more than my share through the years and now I need a rest. Validate yourself, you know your limits, stick to them and stick to your guns. Good luck, we will always be here for you if it gets rough. morgan

Posted

Hi Stacey. I'm so sorry to hear about all the stress that's piling up on you! I can hear (or maybe read is a more appropriate word? -- sorry, brain's a bit foggy again, so I may turn rambly :) ) the emotional turmoil you're battling right now. Wish I could be there to help you out!

As for the situation you find yourself in, I completely agree with your hesitancy at allowing more work/stress to be added to Jim's life. It's so hard to say no to family mambers, isn't it though? We had to go through some very tough decisions regarding the major messes my aunt's family had gotten into. Same deal of everyone calling us because we were the "stability" of the family -- I think part of it had to do with the fact that we were willing to listen to everyone longer than other people were. :) Anyhow, we had to come up with compromises, too. We couldn't just turn our backs on them -- they're family and we dearly love them. However, the more we allowed ourselves to be sucked into the whirlpool of decisions, the harder things became for us. We ended up agreeing as a family on what we could and couldn't manage, then communicated it to the rest of the family gently & lovingly & firmly. They understood that we had needs as well as they did -- sometimes you just have to remind them that you too are human -- you can only carry so much before things start to drop & break.

I would suggest really sitting down and talking with Jim about his feelings on the matter. He's your number one priority -- you don't want to risk stretching that relationship too far. You've said that he's your support. With both of you in agreement, I'm sure you'll manage to find a way to help meet as many of your parents & sister's needs as you are safely able to -- that doesn't mean that you'll fix everything. I especially don't like the sound of your parents moving close to you under the expectation of your caring for them; as you said, you have enough trouble looking after your own health. Be loving yet assertive in protecting your sanity time -- if you cannot handle so many calls from your loved ones, make that clear. Caller ID might be helpful (like Nina, we found caller ID worth the extra $), but as an extension of the policy I just outlined -- not as a replacement.

Your family doesn't want to see you start to crumble under the pressure that they are putting on you, either. They may not even realize that you're having trouble coping if they still see you as the rock of the family. Set the boundaries and stick to them for your safety and Jim's. It'll be very hard at times, and you may even feel callous in some instances, but remember that you'll all reap the benefits of it in the end.

Thanks for sharing the load with us -- it's a big first step! Keep us in mind whenever you need to talk, vent, sob, ask advice.... I'll be praying for you all! Sending you a smile and hug! :)

With love,

Angela

Guest tearose
Posted

Hi Stacey, I think there is every answer here with good choices to consider. I will also sometimes say "I'm saying no to your request for help right now because I just can't be there as you need me. But that doesn't mean I won't be able to help in the future. So please ask me sometime in the future."

Keep getting stronger! One tiny step at a time! warm wishes, tearose

Posted

Hey all,

Thanks. It just keeps getting worse now my father in law is the hospital with gastroenteritis and pnuemonia(sp?). ACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I thank you for your words and will respond more later.

Stacey :)

Posted

Oh, Stacey, sorry to hear this latest turn of events. What's the old expression that bad things come in three's?? OK, already, you are due for some positive news! I hope everyone gets an effective treatment plan and begins to see improvement soon. Having both inlaws in the hospital last year during the holidays was difficult for us and when they came home they had weeks to go to improve. My husband and I did the cooking but were fortunate to get home health care in twice a week to monitor their medical receovery. I hope that you and Jim can find a similar solution.

Posted

HI guys!

Sorry I haven't posted it has been insane but things are sort of clearing. My father-in-law is out of the hospital and doing better Thank God. My parents are still a mess and my sister is now considering taking a job away from them and then eventually moving them closer to both of us. They all live about 2 hours away and when she moves it will be an hour. The thing is is that she has to go immediately and that means my parents will be left behind until we can get them moved. Now with a new job she is going to be to busy to help much at first which leaves it to me and my husband. I can't ask her not to take this job but besides the logistics I think it is a bad move. So today twice we were on the phone "discussing/fighting? about it. I finally said look it will be really hard for Mom and Dad to live near us we have enough now. I was proud of myself for that but of course that did not go over well. I know my mom is going to panic and more hours on the phone. Jim of course says well we will just deal with it as it comes but he was getting annoyed again because it was taking it out of me. On top of it all my parents can't come up here for Christmas, I am still in my hole and so Jim said that we really can't have company or go down there for Christmas maybe the next week. Which I agree with I need some recovery time. And my Gran says well I really hope you can go down there it would mean so much to your father. Well DUH?? But if it is go to make me sicker I can't do that.

Thank you for all your support. Sorry for the venting post again. I am working on the nos but so far not so hot. But like you said Jim and I are the important ones and I have to take care of us first.

Hey Nina just a side note one psychiatrist said to me "so your not the average bear" . LOL

Today I was feeling guilty about the conversations with my sister and the fact that I really don?t want and don?t think I can handle them living down the street and I came here and read your responses and realized it is ok. I am right not to want that-- it is not bad, Right???

Thanks you guys!

Stacey :-)

Posted

oh stacey...

i don't have any good words of wisdom...just wanted to let you know that i am thinking about you...

i do agree...take the darn phone off of the hook for a while and take a nap! :) i admit to often not answering if i am too tired or screening whose calls i answer...

aaahhh...our dark sides emerge! :) he-he.

no, really, i think you are right that you have to work really hard at asserting yourself. sometimes though it is hard to decide which is the path of least resistance...and then you just decide to keep being the strong one...but in the end, i think you have to say 'no' more and take care of YOU.

yup, easier said than done. if i knew the secret to perfecting that art i'd let you all in on it. i've still got a long ways to go!

hang on...and keep us updated.

emily

p.s. and come here to vent if you need to again!

  • 3 weeks later...
Posted
HI everyone,

I am still sitting here in my hole but a little higher and need some advice.  As I have told you my dad has been ill and though he is doing better he is not better yet.  Both my parents are having a hard time dealing with his illness and the resulting being at home and change in their lives. My sister who has been great is also having problems of her own.  The thing is that they try and not call me but yesterday things got bad and I spent a lot of the time on the phone trying to calm people down and think of plans and it was just bad.  And I feel so awful.  My sister keeps saying that my parents should move up closer to me but what can I do? If my day falls I can't go over there. I can't get out of the house.  My husband is wonderful and does all he can but to add that burden????  What do you do when you are the one that everyone calls when things go wrong and you are having a hard time yourself.  It is hard to because what little extra energy I do have some days I would like to have for Jim and I know it upsets him sometimes that they drain me so.  But I can't not be there for them either.    And to be honest it frustrates me because I think hey 9 years of dealing with this!  And I don?t call them for crisis's. It just seems that I have no one to call on, they are all calling on me. Except you guys which I know! My friends do this too and I am so tired and having a very bad back slide right now.    My mother now has shingles, she has to take care of my dad, their doctors are ridiculous (another loooooong story),my sister is trying to sell her house take care of her 3 year old and her ?husband?.  Any advice?  I guess I just needed to vent a bit but do you understand and can you help me deal with this all without making myself worse and still helping. Reading through this is it is a bit of a jumble but hope you get what I am trying to say.

Sorry for the cry of help again the hole I am in is deep but you guys and Jim are my light.

Stacey :-)

Hi, I'm Miriam

Boundaries are very important and it sounds as though you are pretty good at that. Perhaps its time for your parents to move into a retirement community where they have there own apt and someone to clean, meals etc...That way you can see them when you are well, and know they are cared for otherwise. I just went through this situation myself. Its hard yet there aren't many other choices keeping sacred your husdband and his needs and concern for you.email me anytime

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