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Lacey Girl

How does one educate his family that lives 600 miles away

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Thanks for being there, guys. It helps to know we are not the only ones to have this happen.

Question for the day: How does one educate his family that lives 600 miles away? We had a trip scheduled to see them (and my family - on different days) this weekend. With the doc's permission, we are still going. However, it is turning into a major circus. My family knows about stroke so they're keeping their gathering quiet. No small children, pets, loud music, etc. His family, on the other hand, wants to get together with the WHOLE family at once. I explained that he tires and gets confused easily, and suggested we meet with his two brothers at a quiet restaurant so we could actually talk. It has turned into twelve people, including two teenagers and two children under the age of two! They just don't get it! (BTW - this is a very nice place - not one where you would expect or want babies.) Also, when I mentioned the tired thing, his dad replied "yeah, I get tired easily too, especially when I go out to play 18 holes of golf". Not the same! So how does one educate these folks? Or should I even try? None of them have come to visit in many years - they expect us to go there instead. Stupid us: we go annually. I feel as though they're coming to see for themselves what a stroke looks like. Perhaps I should dress my husband in a clown suit.

Yeah, I'm kind of bitter. These people never even sent a card. Although each of his brothers have called once.

Other than that, things are going well - slowly, but well. Therapy is progressing, transportation issues are settled for the time being, and life is, well, getting back to routine. I almost said normal, but what is normal, anyhow?

BTW - DH is 56. Luckily, his patience (even before the stroke) lasts a lot longer than mine. And he han't lost his sense of humor. I think mine has gone into hiding.

Thanks for the idea on the book. I plan to order it today. Educating myself seems to give me a measure of control.

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Hi Lacey, I also have had noooo family support from my husbands family. His mother has minimized the whole thing. They are very well off to say the least,and live in the same state 3 hours away.They never came to our house after the hospital stay. I can barely stand to look at them anymore. To answer your question, you tell people what you know,and if they really seem to get it you will see it on there faces. You can even print out some pages of imfo from this web site about being tired all the time,confused all the time ect. copy and hand them to family members, if they care.Another good book I read is stroke for dummies.Good read. Because my husband looks okay and returned back to work,people assume he is a okay. But he is far from it. He struggles to to get everything done and it takes him twice as long. We own a small business and my son and I work very hard to keep it all together!! My in laws don't understand why we cant bring in 1,000 a day or more. I finally explained the he is only at half capacity! I think with some people that they just don't want to care because they are to self absorbed. You have to forget about these kind and focus on you and the husband. In the future tell them its to mush for you two that he needs down time. I am to the point after a year that I make the choices,taking it all off the husband you will discover this woks well with many major things that come up.Like I said use what you have learned to educate people[like the brain takes 6 months to stop swelling],I learned that from reading these posts. Try to get that sense of hummer back if you can,let us know how it goes. this site is a god send! Pal

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Ask them to join this board as family, and then let them read, ask questions in the forums, they will learn exactually what impact stroke has on the survivor and family.

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hi lacey, i am so sorry the family just doesn't get it. we can't choose our families, just friends. i think alot of them really sense their own mortality after a family member has a stroke, or they just don't care. sorry to be so blunt. but come on. family should always be there for each other when a crisis hits, shouldn't they? stick to what you know, if its to much for hubby, don't do it. you are the only one that truly knows how he is post stroke. i too would keep it quiet for him. if they dont care enough to abide by your wishes. then another time it can happen to get together. no one understands unless they have walked in our shoes. something like this just shows their ignorance. people can educate themselves with books, internet and this website, if they cared to do so. its not that hard to figure out. good luck and i hope your visit goes well for you both. do not get overly stressed over it all. just leave if it becomes to much for either of you.

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Lacey,

 

Yes, family can be horrible at a time like this. I know that first hand as well as from what others have gone through. Short of smacking some sense into them, provide them with the link to Strokenet and let them read for themelves. You can probably talk to them til you're blue in the face and not get anywhere. You know what's best for you and hubby.

 

I hope they get it finally.

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So, I guess smacking them is out of the question, huh? Leaving is definately an option I will consider if necessary. While I don't want to spoil the visit with his family, it may not be much of a visit. I will tell them about this site but I don't expect them to use it. They really do seem pretty self-centered and not interested in learning about anything. It's funny about the self-centered as I was thinking that about them, but was afraid to admit it. Maybe they just don't want to believe that something could possibly be wrong? Mortality issues, maybe? Or just plain stupid?

 

Thank goodness for my family. They also live in the same area as his family. As soon as my sister heard, she told me to say the word and she would be here on the next flight. I held out for a day or so, but finally admitted I needed her. Sure enough, she was here a few hours later. She spent a large amount of time at the hospital with us, and the rest of the time she cleaned, did laundry, and lent her shoulders when I needed them. What a treasure. The rest of my family called, sent cards and email, and did what they could to be there for us. In his family's defense, one brother (unfortunately not one of the ones we're going to see - he lives elsewhere) also said he would be on the next plane if we needed him. And, I believe he would have come if I had asked. Sometimes that's all I need - for someone to make the offer. Too bad most people don't bother. I think we've been exceptionally lucky so far.

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Lacey,

After reading your post it sounds to me that your husband may need to be the one who determines what and how much you do with his family. I know that even meeting with cousins he was not close to became a real boost for my husband post-stroke. I can understand meeting with the family if that is important to your husband. IF he doesn't feel like it then just bow out. If you decide to go and he gets tired, at least you can stand up and leave. If you have told them your husband's limitations and they still do not understand it is their problem. You have to do what is best for your husband. You are his biggest advocate and sometimes you have to take a firm stand. On the flip side you need to allow him the time he feel he needs with them as well.

Ruth

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Lacey Girl,

Since you obviously can't smack them...I would take the naughty wife/nurse approach. I was a nurse for 25 years and we never hesitated to be the "BAD GUY" when our patients were involved...you simply tell them their plans are not acceptable for your husbands health, if they baulk then you cancel your trip. It sounds like a disaster from a health viewpoint. If they really want to see him they will cooperate. If they don't cooperate, they don't have his best interest at heart. You can give them all the reading material in the world until you are blue in the face and it will make no difference. These people are selfish, want what THEY want. You are his wife and patient advocate...tell them what you will or won't do . You are in control. Pjoy ALIAS NURSE CRATCHET :) :)

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Lacey, it doesn't pay to be over-protective either. I know Ray really sparks up when we go out to dinner. He may cough and choke at home but never in company. I think it brings out his best social skills to be out somewhere nice for dinner. I keep what I order for him as simple as possible and then he and I can both enjoy the food. Of course he is over-tired the next day but it is still worth it to see the enjoyment he has just being there among those he loves. I have turned down a few invitations and now looking back Ray would probably have managed them okay.

 

I think we often don't go out in company thinking that something might happen that we are not able to cope with, or that people might react badly to something that happens. It is better in some ways for family especially to actually see the reactions, they should be abe to draw their own conclusions from how your husband looks and sounds. Hopefuly they will notice the differences but still love him the same!

 

Putting the elders up one end of the table and the youngsters down the other works for our larger family gatherings. We have family who still participate in our lives and some who just view us from a distance. There are some who will just write at Christmas or phone twice a year. But it is their problem, not ours. Those that are still in contact with Ray manage to enjoy his company and mine too.

 

If you just enjoy the moment things often work out much better than anticipated. Hope this visit does for you.

 

Sue.

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This is wonderful! I need the good advice and support and am getting both from all of you! We leave tomorrow morning, veeerrrry early. Saturday - his family, Sunday - my family, and home on Monday. I'm thinking the "day at a time" is going to be modified to an "hour at a time". I'll watch and play bad guy if necessary. I like the idea of putting the kiddies at one end - as far away as possible (neither of us are baby people, nor have we ever been). Perhaps we can have a quiet conversation among a few adults. He enjoys being out among people, and han't seen his brothers in a couple of years so I'm hoping we'll have at least a little while when he can "stay connected". Those are the words he uses, "staying connected". And if it gets to be too much, we'll go back to the hotel room. He is very tractable, looks to me to make the decisions, and pretty much goes by what I say, but will voice his opinion. I'll just have to be careful to pick up on all the cues, both verbal and non-verbal.

 

Yes, I'm still worried - I think I'll worry forever. Having a concrete plan of action makes me feel better. Though I still like the idea of smacking them :)

 

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Well, everyone, hello again. An update on the family visit. While I wouldn't file it under favorite times of my life, it wasn't as bad as I was afraid it was going to be.

First off, I was adamant about scheduling a nap and was very glad I did. After visiting his dad, we went back to the hotel where he was easily able to take a 2 1/2 hour nap. Shortly after, we met his family for dinner. The restaurant wisely chose to seat us in a private room where there was little distraction. The visit went very well. I was able to explain, with his help, the types of problems he/we are facing. I don't know how much got through, but at least some of it did, with some of the people. And I guess one can't expect more than that. He was having a good day as well, so that helped, too. If nothing else, I think he earned their renewed respect. There were comments about medical retirement, but I think they were just jokes. Al in all, I have to say it was a fairly successful trip. He was wiped out for a couple of days later, but fine to go to therapy scheduled on the second day after our return. Since then, he has had several "not good" days, but I don't think they're a result of the trip. If I recall correctly, "not good" days come without warning, and often go just as quickly. So maybe we educated some people after all!

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Glad the family visit went well for you. Yes, those bad days appear to crop up quite unexpectantly but they are less over time.

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lacey, i am glad the trip went well for you both. now maybe they will take a much bigger interest in how you both are doing and offer help when needed, bad days do come and go and we never expect them to pop up but deal with them when they do, the best we can. now you both can rest and relax that its over for now.

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Letting them see first hand what you two are dealing with might have been a psychological slap in the face. You should now be comfortable asking them for physical, emotional and financial help.

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lacey,

from one newbie to another....i just spent a bit catching up on your planning and then going to see family. glad to hear it turned out well.

 

i totally agree with you in your first comment about people and friends coming to visit to see "what a stroke looks like" i am also experiencing that and it is so upsetting and hurtful to see friends-some family-react out of curiosity rather than love. my ex also had a huge indention on his left scalp from the craniectomy to remove a bone flap. i knew people were coming to gawk.

his family and i took the stand that pjoy has---nurse cratchet to the rescue!!!! i am a nurse also and agree with her.

you are his biggest advocate and he needs you to stand up and protect him when he cant. his family and i have absolutely no problems explaining that a visit is nearing the end-due to overstimulation or whatever. we have found and you will too that the true friends will be more than helpful and obliging. and some will even ask questions or pick up on hints. i even try to insert humor and throw in a joke.

 

one other comment you made also struck home...you stated that good/bad days are unpredictable. how true is that. we are fresh into the stroke-april 14 2008 and are still reminding each other daily of it. we try to joke and say that he is just taking us on a huge roller coaster-one of his favorite things to do with his daughter-only this is an emotional roller coaster. we all joke together that we would like to return our season pass to get off these wild rides. i then add " how about you take us on a nice sweet merry-go-round??"...still waiting for a slower ride......

 

hope to read how you are doing soon. good luck! kelly

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Well, we've had a (hopefully short) setback. Tuesday wasn't a great day and by Wednesday night, things weren't looking better (some vomiting and queasy stomach - no appetite). Thursday morning we went to the Dr. where they did an exam and bloodwork. Kidney functions were off by quite a bit and BP was low - 100/65 or so. The Dr. was concerned enough to actually call me. He is off BP meds for the time being, drinking lots of fluids and seems to be doing better. He was able to eat a bowl of cereal this morning, and kept it down. We're re-doing the labs on Monday, unless he gets worse, in which case we'll head for the ER. Of course, I'm hoping for the best. So far, so good.

 

In other news, we haven't heard from any of his family at all since we've been home. Interesting. Now that their curiosity is satisfied, I guess we won't hear from them until we get a Christmas card. Might be better that way, anyhow.

 

Friends and my family are still staunchly by our side. They call or stop by for visits, and have helped with the chauffering. One friend took him out for a couple of hours on Tuesday, just to get him out of the house. How great was that?

 

And here is the really good stuff: once we get the medical stuff sorted, he is cleared by therapy to go back to work (part-time, to start)! He's been fired by OT, and will continue speech twice a week - still working on cognitive stuff. She wants him to go back to work so they can decide if there are still areas that need to be addressed. It is so hard to tell here at home. Sometimes he seems to be his old self, and other times there is a brain hiccup that leaves him seemingly blank and wondering. We joke about having to kick-start, or -re-boot him from time to time.

 

Each day I am reminded that miracles happen, right here at home. And, when I forget, the doctors are quick to remind me. 'Course, once I am cruising along complacently, a bad day comes along to bring me back to the ground. With any luck, the landings will come easier. Perhaps the day will come when I won't have a need to turn on my inner b***h.

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Thank you for the update. Sorry to hear that hubby has had an icky spell. I remember before my stroke I would just keep forging ahead even when I did not feel well. Now, post stroke, that is much harder to do. Another side affect of stroke that we must deal with.

 

As to family - glad to hear you're still getting help from your family and friends. His family might be going through their own stages of grief regarding his stroke whereas they remain in denial and not moving forward to acceptance.

 

Whoohoo - returning to work - even part-time that is stupendous. Wish him the best of luck. Working will help keep his good brain cells churning.

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Lacey:

 

Just read this thread but am going through something similar with my moms stroke. I recently heard a show on how people react in crisis and how many people will simply freeze. Examples were given of ship sinkings and other major catastrophes were people were observed doing the most mundane task. The net of the behavior is that most (the majority) will seek normalcy through resumption of some normal activity. I think something like this might be partially to answer why people just turn off when someone you thought they loved gets this sick. Alternatively it could be good old fashion selfishness.

 

Anyway if its any comfort there are others out there going through the exact same thing. There seems to be some solace in knowing that so its the best I can offer.

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