Hi, I don't know if this is usually done -- recommending a site on another place- but Daily Strength has a wonderful support group for both bi-polar support for those diagnosed with it and bi-polar family and friends that helps us understand. In my case it is my best friend who asked me to learn more so I could understand. The bi-polar support is open to families and friends which is where I am learning to understand what it is like to have it and some ways to help.

Flowergirl, I understand many of the things you mentioned about 24/7 caregiving. My husband aged 75 is in the middle stage of Alzheimer's disease. He is on medicine that slows the progress, but it is losing its effect so another two drugs have been added. His short term memory is almost completely gone, he impulsively will do just the opposite of what I have asked. I loved two little sweet gum trees and was growing them in the yard. Just minutes after I told him this I saw him tear them out, break them into bits and throw them in the yard waste barrel. He was not mean-- he just got confused when trying to clear out some weeds. It is hard but I try to not look too far ahead.

Sandy

Thanks for you reply.

My husband 's oxygen level is so high thats why he can't really go much.  I get him to go out for dinner while he can sometimes but that is rare.  He only has one lung and it's bad now.  His oxygen level is on 8 and can only go to 10 and at that point he will be bed bound.  The doctor said he is the only patient he has that is on as much oxygen as he is and still able to walk some.  It is getting worse because this time last year he was still able to drive and go to work as he was fixing to retire anyway and the doctor even said to work as long as he could beause he knew Walter would shut down when he was stranded at home.  He's scared now because he knows that he doesn't have much window before he is at maximum level and knows that he will be bed bound and that is not an outloook he wants.  I don't know whats ahead for us but I don't want to borrow trouble so I just look ahead one day at a time.  I do know I will have to quit work (work two days a week as a cashier) soon as he will not be able to dress himself and take showers by himself because its too triring for him alone.  I didn't sign up for this and neither did he, but you take for better or worse and do what you have too. I do  know that God has a plan for us all if we believe and trust him he will provide.  That in it self is comforting.  We do belong to a Local Church, but I haven't been active much lately, hiding out I guess.  For some crazy reason I feel more alone in a crowd and have a desire to isolate myself from people which I know is not good.  I don't want to be asked questions and have to explane things so sometimes I just check out.  I am close with my daughter and keep grandkids some too, work in my garden, work a couple of days and that helps.  People I work with don't  ask many questions and customers are friendly and it helps to have an outlet for differnt conversations all day.  I'm not looking for piety it just helps to confront my little demons sometimes and reflect that there are a whole lot worse situations out there and I am still blessed.  Thats why I checked into this site.  I might add my husband is the one who started on this websit with aarp and I suggested he start a site for people like him.  He did and its called SHUT INS and they have some new members that are in simliar situations.  But anyway thanks for taking the time to response to me, as I had not checked this in a while, its uplifting to here from other people that have been there. 

Elise

Thanks for your reply too. 

My husband can do nothing but watch TV too, but he did start a group on line called the SHUT INS with the AARP which is for anyone, especially for people who are inmoble.  They have 3 of 4 members now and it helps to talk to ones that are limited in their lives.  It also helps the caregivers too.  You might tell him about it if he is interested one getting on line.

My husband has bouts of depression too, and sometimes I do too.  I try to stay busy outside where I created a large garden full of pernnials and roses and all kinds of flowering shrubs.  I call it my oasis, he calls it the money pit.  Oh well, you can't take it with you, we don't travel, I don't have expensive taste in colthes, jewlery or any of that  stuff, so I buy flowers.  Besides thats what all us old southern women do, dig in the dirt with flowers, and get fat on southern cooking.

I do work a couple of days a week as a cashier, I make sure he has everything he needs before I  go to work and its 5 minutes away.. I know I will half to quit when he gets where he can't dress himself, but I will go as long as I can because it helps me to stay in with people.

I will keep you in my thoughts too and let me hear from you again, please.  Elise

Thank you for replying to my message, I haven't visited it recently, and was clearly cheered on be your stories.  All I can say to you is, WOW.  I can't begin to say how inspired I am by your families unforunate struggles and the way inwhich you have to decided to solve them.  

Yes, you have to keep a sense of humor or you'll go nuts.  I look at my husband's limited sourses and sometimes smile as he finds only the  bad in  his situation and try to remind him it could be worse.  To take one day at a time and make the best out of it.  Yes he is limited but he could work around somethings but refuses to try because it draws too much attention to himeself in front of others.  It's a guy thing.

I have already told him if he acts up when he gets worse, which is coming, I will hire 24 care and hand him the bill.  That gets his attention.  I do the best I can to make his life more comfortable and  go about doing things on my own.  That's where it gets lonely and I have to fight not to get depressed or  get on a piety party.  Life is not fair sometimes and we make decisions in life that can bite us in the rear later in life, but God promised he would always be there and hold us up for those who believe and trust him.  Who else but God could have a sense of humor in life as he looks at the things we do, the decisions we make, and wayward way we live out lifes as if we have any real control over the universe.

Thank you again for your insight and I will keep you and your family in my thoughts.

Elise

Wow, your all courageous women.  I'm inspired by you. 

I have a 25 year old son with schizophrenia (which is tough), a 28 year old daughter with Bipolar (which is throwing me for a loop because I know so little about it) and an ex-husband who fell down a flight of Pennsylvania stairs and broke his neck.  He wore a halo which is a metal contraption **** with about 4 screws into his head.  It became infected and he was in a coma for 2 weeks with a 50/50 chance of making it out alive.  He did survive.  Then he was told he had lung cancer.  I thought, gee, if he didn't have bad luck, he'd have no luck at all.  This was my children's father.  He was in San Antonio and I was in Fort Worth with my son.  My daughter was trying to take care of him but it got to be too much for her.  So I told him to come here and I would do my best to take care of him.

So now we all live together again.  I think fate/destiny is a very strange thing.  After 10 years of being divorced we are living together again as roommates.  I take him to the VA hospital for his doctors appointments and go with my son to his doctors appointments.  It gets really tough.  I think it helps to have a great sense of humour or I would cry.

I just found out about the area agency for the aged in Tarrant County and I'm going to apply for assistance with them.  They will take my children's father to the doctors appointments and help in other ways.  Perhaps some of the ladies in this topic group can check to see if there is an Agency for the Aged in your area to help alleviate some of the stress your going through.  Good luck and cheer.

Take care of yourselves because without you where would your men be.

Linda D.

 Hi, I am new to this group but not to AARP.org.  I am taking care of my husband, too, who lost his entire stomach over a year ago because of a rare condition, not cancer, in which all the blood supply shut down to the stomach.  He went from being 215 lbs. to 155 lbs. at nearly 6'3" and can barely eat. He is 75 and has given up all driving because he is constantly very fatigued and can do nothing but watch TV and read.  He has always been a very optimistic person, more than I am, but now has bouts of depression.  We have no family close by and lost friends we thought we had, so it has been difficult.  His 3 kids have rarely come to see him, and my daughter lives over 1200 miles away.  So needless to say, I have trouble keeping his spirits up--and mine, too.  The good news is that his diabetes, high cholesterol and high blood pressure all disappeared!!!  
But we are hanging in there, and I volunteer once a week at the hospital that barely saved his life to try to get out some.

Dear Flowergirl,

I have to admit I haven't posted much to this site recently, but I saw your post and, even though it's almost two months old, I felt compelled to write. 

I was 50 and my husband was 56 when he died five years ago this past July.  I wasn't ready for it; no matter how well you prepare, you probably never will be.  My husband was also on oxygen 24/7, but he was very mobile and worked full-time outside our home up until about six weeks before he passed.  I would like to challenge what you said above about he "can't go anywhere except to doctors".  Sure he can.  He doesn't want to.  He's wrapped up in his own little pity party and he's trying to make you his captive audience.  But don't let him.  Are there old friends and/or relatives nearby?  Maybe he's feeling sorry for himself because they don't visit any more.  So take  him there.  Oh, I know what a hassle it is to take the oxygen tanks - enough for three or four hours, and I'm not saying to do it on a daily basis.  But maybe once a week, or even once a month - whatever works for you and your friends/family, go visit someone besides the doctor.  Does he like to read?  Maybe a quick trip to the library would boost his spirits.  If his eyesight has gotten bad (who's hasn't?) maybe books on tape would be a good idea for him.  His day is monotonous, and so is yours.  Maybe a walk around the block for you while he naps, or maybe find a boy scout troop who could send a strong young man or two to help you push HIM around the block - the change of scenery might do you both good.

I know you love him dearly; but you also need to take care of you or you can't be the best caregiver you can be.  If he doesn't want to go out to visit friends, maybe one could come visit him while you go have lunch with the girls, or go for a walk in the park, or go shopping or to a movie or do something else you enjoy.  There are those who will criticize you for still wanting to participate in life and things that give you pleasure (a concert, perhaps?  book club?), but those are the stress relievers that can keep you going. 

And never ever ever feel guilty.  You're doing the best you can.  Nobody, not even God, will ever ask for more than that. 

Candy