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6/20/12 11:29 A

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Oh, gosh, that is rough. I'm sorry to hear everything you have been going through. :\ I can kind of relate because I just spent a year a a half caring for my grandmother who had severe physical limitations. It can be so hard to find an aide who actually cares and is competent. I hope one comes your way, though.

If you're tired of starting over, quit giving up!


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6/8/12 3:22 A

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JMORRIS is TOTALLY bang on!

You can STILL be soft-hearted, but that is totally different to being assertive, and THAT is what you need to be!

There is a book that you might benefit from reading; it is called "Boundaries" by Henry Cloud and John Townsend! I am sure that a local Library will have it if you don't want to buy it!

Good reading, and remember, please DON'T allow your son to see "Doormat" written over your forehead!!

BIG Hugs,
Kris

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6/8/12 1:15 A

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First, you are not an awful parent or grandparent. It is apparent that you care for your family and want the best for them. However, your son needs to grow up and learn that he is responsible for himself and his child. If you don't stand up to him, what is he going to do one day when you are no longer around to take care of him. He does not have a right to talk to you like this. emoticon

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6/7/12 1:23 P

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Kris,

I am a very soft hearted person, in case you could not already tell that. I wish I was not, but I am. My (adopted) mom was very hard hearted, pretty cruel to everyone and did not give a hoot about anyone's feelings. I tend to naturally be opposite of that. And it is very hard for me to be otherwise, even when I know that someone is doing me wrong. When I do treat someone as they should be treated, I feel badly.

My son would never come over here long enough to take care of his dad. The ONLY time he comes over now is when he wants something......money or a babysitter.

He says that I am an awful parent & grand parent.

~~Starr~~

HAPPY 2014. MAKE IT A FUN & HEALTHY YEAR!

"RIP MY SWEETIE, I LOVE & MISS YOU." MARCH 3rd 2014


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6/5/12 6:01 P

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I hear what you are saying, BUT you NEED to learn to say NO more often, AND THEN STICK TO IT!! If you son doesn't like it then stiff bikkies! Tell him if he doesn't believe you about the time and energy-sapping that is involved with the care of your husband, then HE should do a day or two, and then for him to remember that you have medical problems yourself with makes it even harder on YOU, and then he will (hopefully) understand! It DOES sound like he is excessively selfish, tho'!

Where it comes to your husband and the urinal needs, is it possible to talk with his Dr about having a Catheter in place. That way it alleviates a lot of your time because it can be emptied less often than your husband would need a urinal.

You really DO need to be harder on your family and more gentle on yourself!

Kris xx



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6/5/12 11:30 A

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Kris,

I hate, hate, hate that I always FEEL so guilty when I say no to people....even when I know that I should say no to them. My mother lived pretty much for herself, and my needs were put to the side most of the time. So I guess, this is partly why I have such a hard time saying no to folks. But what ever the reason, I hate it.

Usually when my DH is calling me it is for things like needing his urinal, which he can't get or hold and he needs right away. Or he needs to get on the toilet. It is usually something urgent like that. He has to take Lasix (don't think that is the right spelling) but it makes him have to pee about every 10 to 15 minutes for up to 4 hours after taking it. This is on a daily basis.

I have told our son that I am very tired & sick (I have CFS, Fibro & back issues too, as well as migraine headaches) and am barely managing taking care of DH :& myself without having 3 rambunctious hyperactive little boys to chase & worry about. Our son says that I am just "making up a huge store so that I don't have to babysit his kids".Talk about adding insult to injury. If you have not already figured it out, our son is all about him. If everyone is doing what he wants them to do them they are great people and he brags on them. If they don't jump thru his hoops, them they are the worst people in the world and he is not going to do a thing for them.....family or not.

Really, I do understand my brother not wanting to be here alone during a meal and risking my DH choking while he is feeding him. But I don't understand why he can't come over a couple times a week and shave him and play some computer games with him. Every time I turn around I am always helping him, my sister-in-law & nephew out. Loaning them money, driving them some where, giving them food, pay their rent. Why can't they try to help us out just a little? Please don't mis-understand me, that is not why I help them.......to get "paid back".........but it sure would be nice to have a little bit of a helping hand every once in awhile. You know?

HAPPY 2014. MAKE IT A FUN & HEALTHY YEAR!

"RIP MY SWEETIE, I LOVE & MISS YOU." MARCH 3rd 2014


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6/4/12 6:51 P

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My Sweet, it is understandable that you are so depressed. Learn to NOT be at everyone's beck and call!!!. Learn to say "NO" - even on occasion with your husband! I am sure that if you prompt him with things before you leave, and tell him you will be busy for 1/4 hr or whatever, then he may learn to give you a breathing space. Having cared for physically and mentally disabled people, I know that this technique can and does work.

When your son wants you to babysit, TELL HIM that you are too worn out and that YOU CAN'T DO IT because you are doing too much now, and need a breather.

I wouldn't be expecting a family member to travel all that way to help back to help. That is getting into the unrealistic realm. Your husband's brother sounds like he is fearful rather than selfish. You just need to keep working on him, and any Aide your husband has needs to be in on it too, confirming your explanation about the eating/choking and the choking not being a problem other times.

Good Luck,
Kris

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6/4/12 5:55 P

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THANK YOU EVERYONE FOR CARING.

WHAT I WANT TO DO, ALL THE TIME, IS STAY IN BED WITH THE COVERS OVER MY HEAD. I AM SO DEPRESSED ALL THE TIME

ALMOST EVERY TIME THAT I SIT DOWN MY HUSBAND CALLS ME TO COME AND DO SOMETHING FOR HIM THAT HE CANNOT DO. OFTEN IT IS JUST SECONDS AFTER I HAVE SAT DOWN. I KNOW THAT HE DOES NOT CALL UNLESS HE NEEDS SOMETHING. BUT I AM THE ONLY PERSON THAT CAN DO. ADULT SON WANTS ME TO BABYSIT HIS KIDS, BUT DOES NOT THINK THAT HE SHOULD HELP ME & HIS DAD. DAUGHTER LIVES 5 STATES AWAY, BUT COULD COME HOME AND HELP IF SHE WANTED TO. BROTHER COULD HELP IF HE WANTED. WHEN EVERYONE IN MY FAMILY HAS PROBLEMS THEY WANT ME TO JUMP AND RUN TO HELP THEM. BUT TO THEM MY PROBLEMS ARE NOT AT ALL IMPORTANT. IF EACH OF THEM WOULD GIVE ME A HAND A COUPLE DAYS A MONTH, IT WOULD BE WONDERFUL. BUT I PROMISE YOU, THAT WILL NOT HAPPEN. ANY TIME THAT I ASK FOR HELP, THERE ARE ALWAYS A DOZEN EXCUSES FOR WHY THEY CANNOT HELP. MY DH LOVES FOR MY BROTHER TO COME OVER AND PLAY COMPUTER GAMES WITH HIM BUT THE ONLY TIME HE WILL COME OVER IS WHEN THE AIDE IS HERE. WELL, WHEN SHE IS HERE, THE MAIN THING IS TO GET DH'S SHOWER, SHAVE & MEAL DONE. SO BROTHER COMPLAINS ABOUT THE TIME NOT BEING SPENT WITH HIM. WHEN I SUGGEST THAT HE COME OVER LATER OR EARLIER, HE SAID THAT HE DOES NOT WANT TO BE HERE WHEN THE AIDE IS NOT IN THE EVENT THAT DH CHOKE. WHICH IS NOT GOING TO BE AN ISSUE, BECAUSE HE EATS LUNCH WHILE EITHER ME OR THE AIDE ARE HERE. I GET SO SICK OF ALL THE EXCUSES THAT PEOPLE MAKE.

GUESS I WILL GO. I HAVE A HEADACHE FROM CRYING. GONNA GO TAKE SOME PAIN PILLS.

HUGS,
~~STARR~~

HAPPY 2014. MAKE IT A FUN & HEALTHY YEAR!

"RIP MY SWEETIE, I LOVE & MISS YOU." MARCH 3rd 2014


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6/3/12 10:53 P

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Hi Starr. I hope that your situation improves soon. Don't feel that you are alone and that no one cares. If we are too far away to do anything else, at least we can commiserate with you. emoticon

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6/3/12 10:33 P

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Hi.I know what you mean about the agencies. I don't have a health worker but I do have a homemaker and a chore person. They are sometimes late and they leave early. When they feel they have done enough, they want me to sign the paper and leave. Sometimes if I ask the homemaker to do something, she will tell me that is not her job, that is up to the chore person to do. I guess they feel they don't make enough to put themselves out.

As the others have already stated, if you don't take care of yourself, you won't have the energy to take care of your DH. Even if it is to take a 20 minute hot shower, do something nice for just you. Take care and stay in touch.

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6/3/12 6:49 P

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emoticon I am sorry! I hope you feel better soon! emoticon

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6/3/12 6:43 P

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Hi Starr - man, you have had a cow of a week :-(

I used to work for a Home Help Agency in New Zealand. Here, the onus is on the Agency to ensure that this sort of personal cares is covered by staff - even if only relief until a permanent one is appointed. They have a answerphone which is covered 24/7, and important stuff is actioned during week-ends including Public Holidays.

As the others have mentioned, it is vitally important that you get some "ME" time. It CAN be done in your own home if need be. Otherwise, when the caregivers arrive, try to get out of the house for a breather and to do what YOU need to do!

We are here for you and will support you as much as we can.

BIG hugs,
Kris xx

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6/3/12 5:22 P

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Hello Starr! I am sorry this has been a difficult week and sincerely hope you will find someone soon to give you some relief. We are definitely here with support and encouragement anytime you need us. You matter and we care!

If your husband is in line for a replacement aide, perhaps the VA can find a qualified and competent individual to do what needs to be done. Why don't you see if the Patient Advocate at the VA can make things a little easier for you both.

Like Nancy has suggested, I really encourage you to get some serious 'me' time. Perhaps a bubble bath with some soft music and a few candles will help you relax. Be kind to yourself and know that we are here for you. Come back soon and post often. We are here for you. If you use our support you will find it is here when you need it. Eat well and take care of yourself.

hugs,

vicki

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6/3/12 4:17 P

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Starr - I am sorry that you have had a tough week and you can vent all you want here because we do care. Sometimes just getting it out helps to release pent up emotions and helps to put things in perspective.

Sounds like things are pretty much out of your hands as far as getting another home health aide so I hope you can try and be hopeful about getting another that is caring and supportive. I would think the agency would have back-ups in place for events like this, no?

Make sure you are getting some you time. I know it may sound impossible but if you don't take care of you it will be difficult to be of value to your dh. I know we have said this before but it does bear repeating.

Keep us posted and do share as much as you need.
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6/3/12 1:59 P

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HI EVERYONE.

IT'S BEEN A TOUGHER WEEK FOR ME THEN USUAL. emoticon

WELL, AT THE BEGINNING OF LAST WEEK THE DOCTOR ISSUED MY DH ANOTHER KIND OF MACHINE WHICH WILL HELP HIM WITH BREATHING. HE HAS BEEN USING A MACHINE CALLED A NEBULIZER, WHICH A LOT ASTHMATIC USE. BOTH ME & MY DD HAVE ASTHMA. BUT THIS MACHINE COMBINES TWO MEDICATIONS AND BLOWS THEM OUT IN A MIST INTO THE NOSTRILS THRU A OXYGEN MASK. THE NEW MACHINE IS CALLED A COUGH ASSIST AND I THINK IT IS BEST DESCRIBED AS A MACHINE WHICH MAKES HIM BREATH IN AND MAKES HIM BREATH OUT, SIMILAR TO A RESPIRATOR I THINK, BUT NOT AS INVASIVE. WHICH ALSO MAKES HIM BE ABLE TO COUGH UP JUNK THAT HE GETS IN HIS LUNGS WHICH SHOULD NOT BE THERE. WITH THE NEBULIZER & COUGH ASSIST TOGETHER, THE DOCTOR'S ARE HOPING THAT HE WILL GET PNEUMONIA LESS OFTEN. BUT WITH ALL THAT HAS TO BE DONE EVER DAY FOR HIM (WHICH DOES NOT INCLUDE WHAT THE HOME HEALTH CARE AIDE IS SUPPOSE TO BE DOING) IT IS TAKING ME 3 & 1/2 HOURS IN THE MORNING & 4 HOURS IN THE EVENING TO GET JUST THE VERY MANDATORY THINGS DONE FOR DH THAT HAVE TO BE DONE EVERY DAY.

AND LAST FRIDAY DH'S HOME HEALTH AIDE QUIT, JUST LIKE THAT. WITH NO WARNING AT ALL. NO 2 WEEK NOTICE, LIKE YOUR SUPPOSE TO GIVE WHEN YOUR GOING TO QUIT YOUR JOB. THE ENTIRE TIME SHE WAS HERE FRIDAY SHE ACTED LIKE EVERYTHING WAS FINE, ACTED LIKE HER NORMAL SELF. THEN WHEN SHE WAS WALKING OUT THE DOOR AT 4:00 SHE SAID THAT THIS WAS HER LAST DAY WITH US AND THE COMPANY, SHE WOULD NOT BE BACK. THIRTY MINUTES LATER WE GOT A CALL FROM THE COMPANY....EVIDENTLY SHE DID NOT TELL THEM TILL THE VERY LAST MINUTE EITHER. AND OF COURSE SHE TELLS US ON FRIDAY AT 4 PM, WHEN WE CAN'T DO A THING ABOUT IT TILL MONDAY MORNING. I AM REALLY IRRITATED ABOUT THAT. IT'S NOT RIGHT AND IT'S NOT FAIR, BUT WHAT IN LIFE IS, RIGHT?

WE HAVE TO GO BACK THRU THE VETERAN'S HOSPITAL TO GET ANOTHER AIDE, SINCE THEY PAY FOR IT. SO WE CAN'T PICK JUST ANY COMPANY. THE LAST TIME THAT WE TRIED TO FIND A GOOD AIDE, IT TOOK MONTHS OF HAVING PEOPLE COME IN ACTING LIKE THEY DID NOT EVEN KNOW WHAT TO DO. PEOPLE WILL EITHER ARGUE WITH WHAT THEY ARE SUPPOSE TO DO OR THEY WILL DO WHAT THEY ARE SUPPOSE TO DO ONLY HALF WAY. AND IT IS NOT UNCOMMON FOR THESE AIDES TO EITHER BE VERY LATE OR NOT SHOW UP AT ALL, WITH NO PHONE CALL. I HATE HAVING TO RELY ON OTHER PEOPLE FOR HELP. EVEN WHEN THEY ARE PAID, THEY ARE NOT RELIABLE.

WE HAVE NO FAMILY CLOSE BY, WHO ARE OF ANY USE, AND I HAVE SEVERAL PHYSICAL LIMITATIONS. A LOT OF MY DAYS ARE A LOT MORE THEN A LITTLE CHALLENGING. TO SAY THE LEAST. MOST OF THE TIME I AM JUST DRAGGING MYSELF FROM ONE DAY TO THE NEXT.....IF THAT MAKES ANY SENCE.

I AM CRYING NOW AS I TYPE THIS. I FEEL AS THOUGH NO ONE REALLY CARES.

OK YOU GUYS, I WILL QUIT COMPLAINING AND LET YOU ALL GO.

I HOPE EVERYONE WILL HAVE A WONDERFUL REST OF THE WEEKEND.



~~STARR~~ emoticon

Edited by: TEENYSMOM at: 6/3/2012 (14:30)
HAPPY 2014. MAKE IT A FUN & HEALTHY YEAR!

"RIP MY SWEETIE, I LOVE & MISS YOU." MARCH 3rd 2014


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