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Is it just me? My mother had a life threatening illness over two years ago which required hospitalization and she is doing great now. Both her primary physician and cardiologist credit my diligent home care with her great recovery. However, with her many conditions, high blood pressure, heart related problems, etc., any letting up on her diet, medications and care so forth, can result in her getting sick again. Her relatives keep inviting her (without consulting with me first) for day trips and recently for a trip which requires a 10 hour drive one way, staying there for a few days and visiting with alot of relatives that she hasn't seen in quite awhile. I don't feel in anyway that this is appropriate. First of all, no one else is involved in her care and I know her limits, diet and so forth. She would never think of saying she was tired or hungry because she wouldn't want to impose on anyone. I have been told I am keeping her from people who want to spend time with her and trying to totally control who she is with. I feel because I am her caregiver, out of respect, I need to be asked if it would be alright for her to go. People seem to have the mindset that she is an adult and should be able to make her own decisions. If she was able, I wouldn't be her caregiver. She needs daily weigh in because of her heart condition as well as her daily medication and a heart friendly diet. When I started to take care of my mom, I never thought I would have to deal with people asking to take her places. I don't understand it, that's why I am asking, "Is it just me".

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Another thought is that in case you have a family emergency or a health issue, it would be great to have another person who is a little versed in caring for your mom.
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Dawn, I know exactly how you are feeling. Stop me if I'm wrong: you are feeling angry, put upon (by "those" relatives who want to come for the FUN TIME), burdened, because no one wants to come and cook those strictly monitored meals, and just plain frazzled. Yes, we love our elders but sometimes the relatives who never lifted a finger in the tough times aren't the ones we are so happy to see in the easier times. Being a caregiver to me is the equivalent of being the parent that disciplines....leaving the happy times to the other relatives. All the feelings are normal and don't reflect badly on you or your love for your mom. It is hard to see the possibility of "all your hard work" ruined in a trip. But I can promise you that if you put together a check list of things that are required...no excuses allowed and go over that list with the "traveling caregiver" before the trip, that person will get the jist of the routine and might decide it is too much, but may do a great job. Make sure to include medication checklists and how it is to be taken.
Good Luck and BREATHE, much love, Angel
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I understand where you are coming from!!! I too have had this same "problem" with my husbands siblings. When you are the caregiver, and you know how different changes in environment effect your MOM/MIL the others just don't understand. We live down the hall and she won't tell us what is wrong, how are people she sees once in a blue moon suppose to care for her. The person they live with is the one to pick up the pieces when the fun is over and the pain is uncontrolable, confusion is increased, memory loss as increased, crankyness and hatefullness is increased. The normal routine has been interupted and the consequence falls on the caregiver!!!!! Boy do I understand, and I cannot believe that the others on this site have been through anything like you are trying to describe. My MIL cries to her other kids that she is so unhappy. Again, we have planned a trip, she always cancels at the last minute, but this time she is going. My SIL called the respite careprovider to see if she would bring her the 7 hour drive....we fired her the the week before. Making plans for her without asking us first I thought was inappropriate, but I have learned since moving in that people (who know her condition) will call and make plans with her and not speak with us. Then she doesn't remember making plans!!!! Why do we live here now people?
So......I understand your position, we have given our whole heart and soul in to making sure this person is healthy and reasonably happy (she's still in her own home) that we should be consulted before plans are set in motion and asked if this is a good time. In our case also the road goes 2 ways, only a handfull of her realatives come here to visit, at 81, I feel like she is still expected to be the one to head their way. She's too old and her health and mind are not up to it, but they keep pushing it. When she cries and says she misses them they just need to learn to say "I miss you too, wish we could get together" then get on to another subject.
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Bless you for being there for your mother. I hope I have someone who cares for me when I get older. It is very hard to deal with family members who don't understand the whole situation. I don't know if this would work for you, but Mom and I have created a file with her meds, doctor's orders,limitations, and medicare info. I make sure Mom gives this to the friends or relatives whenever she goes and she has a similar list of information about my doctors and asthma in case I need her help. I often remind her that she used to send something like that with me until I married. I also show her the medical information in my pocketbook, so she will know how to help me. I send an email or letter to relatives before Mom goes on a trip just to leave contact numbers and gently mention Mom's needs. In turn, she makes sure my friends know where my epi-pen is even though I am 55. The point to this is that Mom and I look after each other instead of it being a one-sided situation. Mother keeps her dignity and her ability to be of use to others. I tease her when she leaves me, and I ask her how she sent me off to camp and college because I miss her. However, I tell her I want her to have a great time. It is so hard to be a caregiver. I truly think it is more difficult take care of our parents than our children, sometimes. You care about your mother and she will need you more and more as time goes by. Try to do some things for yourself when she is gone. You are a good daughter. Just try to find other ways to make sure your mother is safe. Best wishes, Rebecca
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I assume that your mother's relatives are your relatives. Are you invited to this event? Are they driving 9 hours to pick her up, take her, and make the round trip to bring her back? They must be very committed to the idea of getting her together with their parents.

They have elderly parents with health issues. What makes you think they aren't capable or willing to understand your mother's limitations if you explain them carefully? Could they make the trip with frequent stops for everyone to stretch their legs?

It sounds like Mom is not accepting her limitations gracefully. Conspire with the relatives to limit the time she spends on her feet without making her feel useless.

In other words, I think there are ways around the obstacles, if Mom really wants to make these visits. And what about the one-day outings you mentioned? Surely those should be manageable.

For so many of us who long for a loving relative or close friend to spend time with the Loved One we are caring for, an offer of an outing sounds heaven-sent. It is really hard to see why you are so offended by the whole idea.
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I really appreciated reading all the comments and no I didn't regret asking it. I feel that is what this forum is for and why I asked. I feel it is important that she continue to be around family and friends and she visits with her friends on a daily basis. I guess what annoys me, is that because some relatives will call one day and ask her to go with them on a long trip. These are not people that visit her on a regular basis and by some of their comments I realize that they don't understand her health issues. Because my mom doesn't like to bother people, she would never let them know if she is tired, hungry, or just wants to sit and relax. The trip is too long for her to take as she would be in a car for 9 hours each way. I have also commented to the relatives she is going to visit that the road goes two directions, however they never make the trip with their parents because it would affect their health. Why don't they understand my mom is in same situation as their parents? Instead they question me. And we made the trip last year but by plane so it wouldn't be so hard on mom. My mom has always been the type that would cook up a storm and enjoyed attending to everyone's needs whether you were a guest in her house or she was in yours. They don't want to accept, that she can no longer do this and this is what worries me. It can seem that I am over bearing, but when her knee and ankles swell up because she was on her feet all day and her hands begin to hurt her because she over used them, I am them one that needs to deal with it. They will be back in their own homes relaxing on their easy chairs and I will be applying compresses and compression hosiery, giving additional medications and get to sit there listening to mom tell me what hurts and how she can't move her leg because of the swelling.
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ONE:

You're probably regretting having asked the question in the first place. Don't feel so bad. We're only telling you what you need to hear.

Love is blind; and often blinding. Sometimes we don't see the the real impact of our love and devotion for our parents; or don't want to see it. Especially if it's all true. Common sense can be very uncommon when people run on fumes. It's a lot easier, then, to deny than to admit any wrongdoing.

Caregivers go through a rollercoaster of emotions, so we often go through the motions as if watching a movie or having an out of body experience. How could this be happening to us? Well, it is. Doesn't matter where it came from. What matters is that it's here and we have to deal with it to the best of our ability with what we have and don't have. Face the music, hang on to our underwear, and pray things get better. Or delude ourselves into believing they are when the only thing left is the memory of the hope we once had. Good luck my friend.

-- Ed
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Oh how I wish someone would ask to just sit with Joe for an hour but to take him on a day trip?? I couldnt imagine it. It would be really nice for me and him but I know I would worry about him the whole time, of course he has late stage ALZ which is different. But if he were able and someone was to ask I would jump at it.
I think it would do us both good, but you know best. after all you are the one thats with her all the time.
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Sorry, but you sort of sound like the "older brother" in the parable of the prodigal son who spoke of his younger brother as 'this son of yours.' Are not your mother's relatives also your relatives? Is your mom not mentally capable of making her own decisions?

Maybe because they have not seen her in a while, they don't know that much or anything about her health? Do they just show up at your house and take her? I would assume they let you or your mom know when they are coming to get her? Have you given them a written description about the diet she needs to be on and the medicines she needs to take and when? What kind of shape is your mother in when she returns from these trips? It sounds like these relatives are trying to help you out, plus evidently your mother wants to see them before she dies, but you resent them because then you are not in complete control like a controlling parent. How about go and visit some of these relatives when your mom goes as well?
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DEAREST SISTER:

I don't think this is really about communication or who consults whom. It's about control. Your type of caregiving demands it so much it seems as if Mom couldn't live without you. Every little detail has to start and end with you.

It's okay to take a break from each other every now and then; if only to re-discover the joys of living again.

Good luck my love.

-- Ed
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Naheaton, your MIL has dementia. It is certainly reasonable that relatives would ask you about her schedule, etc. Dawnone hasn't mentioned anything about her mother having impaired cognitive skills. If I asked a woman with a heart condition if she'd like to go somewhere next Tuesday, I'd assume she'd tell me if she had a doctor's appointment. I would expect to treat her as an adult who could make her own decisions. Now if that expectation is not correct, Dawnone can certainly step in and explain the situation and, as you suggest naheaton, ask them to please check with her in the future. I just can't see automatically expecting others to know that they should ask the daughter what mother can do, when mother is not mentally impaired.

Anyway, naheaton, I think your advice would work like a charm. The important thing is to get Mom out and about, among loving relatives for suitable outings.
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Even though my mother-in-law lives in an asst living facility, I am still the one that takes care of her beyond what they do. When one of the family wants to take her somewhere (which I love for her sake) they always check with me. First of all, I could be taking her to the doctor that day or already have plans with her, who knows? So Dawn, you're right they should check with you first, but then you need to make every effort to make it happen for your mom to get out and see people (if she wants to). I would put the word out to those relatives that are wanting to take your mom out. I would tell them that you think it's a wonderful idea, but she's not young anymore and things needs to be prepared before hand. Just give you a little notice and you'll make it happen. That way you're getting your point across and stopping them from getting defensive. I think it's win win.
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I think that you are keeping her from people who want to spend time with her and trying to totally control who she is with.

Sorry.

I certainly don't accuse you of bad intentions. I am positive you have only your mother's best interests in mind. But I think you are not taking a broad enough view of her best interests. What is the point of having good health if you can't enjoy it with people who love you and want to spend a little time with you?

My husband (85, LBD, CHF, diabetes) needs a daily weigh-in for congestive heart failure. What happens when we go on little jaunts for a few days at a time? He misses the weigh-ins. I know the signs to watch for, and in any case congestive heart failure symptoms are not going to come on and be debilitating in a few days. Your mother can take her medications anywhere. I assume anyone who cares for her enough to ask her on an outing will be willing to give her her meds at the appropriate time. Your home isn't the only place she can eat a heart-healthy diet. And do you know what? Two days of eating "wrong" will not cause her a heart attack. Really. Ask her cardiologist.

It has been two years since her life-threatening illness. You have done a magnificent job in nursing her back to health. Now let her enjoy the results of her recovery. If you are not comfortable, ask her PCP and the cardiologist whether she really needs to stay home the rest of her life.

I suppose it is natural to be over protective of a loved one who has had a serious illness. But really, as one who has 2 life-threatening illnesses myself, I can tell you that once you survive those illnesses you really need to get on with your life.
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