TJoe....I hadn't been reading the posts here very much AT ALL and had no idea your wife had become so ill! It's a slow morning here. Get back to us reall soon to give us an update. Jen.
TJ, glad things are more in control and you got her in the hospital. Take care of yourself, read your book and let's hope things will level out for you. Hugs.
JOE, talk to her doctor TODAY ...since she has been so listless and difficult to feed, etc., he may agree to put her in a nursing home (MEDICARE PAYS AFTER HOSPITAL STAY) for the allowable time, - to build up her strength..and YOURS.
I used to think it was at least 30 days, but I've read here on these posts it can be longer..with Medicare picking up the tab. It would be as good for you (if not more so) than it would be for her. Once there, you would be required to hit the road for a week or so and let someone else take care of her. You can visit all of us...and stretch your legs!!!!!
This is YOUR CHANCE. Take it. Just tell the doctor that you need this break, and he will understand. No skin off his back...and all he has to do is sign the order. Also,ask to talk to her CASE MANAGER on the floor. She can make the arrangements for you..you won't have to do that.
Home for lunch. She slept all morning, but just as I was getting ready to leave, she woke up kind of with a start and looked more alert than I’ve seen her in weeks. I think they have the advantage…they can force liquids into her with an IV, whereas I cannot. And she doesn’t like to drink. She was supposed to go to the next step down from ICU, but they didn’t have any beds, so she is in ICU. She never has been a good patient….pulls things out of her all the time, from feeding tube in the belly to IVs and 02 masks. But she’s doing fine, so thanks for all your kind thoughts. Her Dr. is on vacation now, and although a NH is a good idea for me, I don’t think they would feel that way about her. It WOULD be a great time to travel around and meet several of you, which I would love to do, but I think I would be so guilt-ridden about leaving her ‘alone’ that I couldn’t enjoy the meetings. Plus, I don’t think the kids would understand. Love to you all.
Joe, ..Joe...Joe... You see for yourself that she manages better with professional care. If you read your last few days' posts, you'll see the contradiction in your feelings. I was kidding about travel...but you could visit your children, stock up the pantry, get your hair cut, ... things you can't just GO & DO when you have to watch her every minute. What makes you THINK they wouldn't agree that she could use 30 days rehabilitive care????? That's what it would be..to get her back up and truly stabilized. What is this guilt thing. Don't you want the best for her???? Do you feel guilty about taking her to the hospital?? Please talk with the case manager (on staff) assigned to her case.
Go for it Joe. If you get the chance. I agree with Nancy. A 30 day respite would be great for you. Around here most NH let you bring in patients for respite around $100. a day. Would not work for me now but sounds like it might for you. Be sure and take your meds and take care of yourself. Remember our cruise one day. If Medicare would pay for it, that would be even better.
Medicare and a medigap policy will cover 100 days total, but she is in such a condition that rehab doesn't help. We have tried that before, from PT to OT to ST, all of which might help in a small way if they were ongoing, but there are time limits, and when they end, so does the benefit, which starts to leave her going downhill again. No, we have tried, but without success, believe me. So it would just be a warehouseing situation which is what I would feel guilty about. If I could not care for her, that would be a different story...sure, I'd do that, but permanently.
Medicare covers up to 100 days of skilled nursing care and rehab as long as her condition is improving. But as soon as she doesn't need skilled care or isn't showing improvement in the rehab, it will quit paying. We went through this with my mom several times. There was no way she should have been at home alone when they sent her home, but she couldn't stay in the nursing home without paying for it or applying for Medicaid.
Texas joe, i just looked up various inhome care agencies inyour area here in Tx. thereare so many ! that offer the ADL's that your wife would need. like many of us here i am sure its reasonable rates and there is one Caring Companions agency in your area that offers as little as 2hrs at a time and 24/7 respite services or imhome campanions. why dont you call them and get setup with one like this for a few hrs /week so you can get out and have a little time for yourself. you are burnt out on caregiving and need some help. i think EVERYONE here agrees!! your posts have been a scream for help, here is a way to get some time for yourself. i am sure you can find one to your liking and reasonable rates. plus they can even do lite housekeeping, AND shop for groceries! anyway they can help or is with DW while you go to a movie/lunch. today my 4hrs out iwent shopping and then had lunch at a local restaurant with wine and by myself! it was very nice! iwill go again-its so nice to have a day out. and dont tell us you cant afford it. you can start with 2hrs! /week. feeling like you need this extra 'push' from all of us here to get moving on this! divvi
Guys, we are going to have to keep a keen eye on Joe because after his new meds kick in and he gets some respite we won't be able to keep up with him, he is going to feel so good. Go Go Go Go!!!!!!
I am going to try something new next week. Yesterday we met a old gentleman friend whose wife passed away last winter of cancer. He was so thin. I talked with him and he said he was missing his wife terrible. They had been married 54 years and he had lost all interest in anything. He was a Deacon in his Church and a Officer in a Important Public Service Job. He said he had lost 60# and had only been to Church twice since he lost his wife. I am going to call him next week and see if he would care to help Paul and me out by coming over and sitting with him about 3 hours one morning next week so I could go to town and I would bring back lunch for all of us. He lives about a mile from us.
I discussed this with Paul and explained we would be doing a good deed by helping Jim this way and he liked the idea. I will let you know how this works out. It would be a win win situation for all of us. Jim doesn't need money so I would just have the cost of his lunch and he would have company (at least in body) for 3 hours and feel wanted.
Some of you might have similar situations like this. If it works out I hope to be able to get him at least once a week.
Almost every Friday night I invite a friend of ours - 89 years old, lost his wife 4 years ago; goes to our church, etc. and the four of us used to go out all the time. He comes for dinner, cookout, whatever. I leave him and DH to talk for awhile and I do whatever, and then serve the meal. Right now they are on the back porch talking. It's good for both of them - and for me!
Latest wrinkle...they needed to put a Pick IV (I think that's the name) in the upper arm that goes directly thru a vein into the heart (that's what they told me) because her veins and thin skin pose a danger of severe skin problems resulting from the med (Dopamine for one, antibio for another) getting under the skin, or something...I don't know. Anyway, it's in o.k., but with her record of pulling things out, I hope she doesn't try pulling THAT out. Couldn't be good. I'm going back after dinner, which I will microwave in a few minutes.
Tjoe, you can tell them they could try using the 'soft restraints' on her hands to keep her from pulling them out. we used them on DH when he kept pulling the cath and IV/ when its in their best interest for their care i believe they can use them. you can give her just enough room to move some but not get to the IV. it worked find with my DH. he scratched face etc and ate but couldnt get any farther. it will keep her from misery of reinserting them which is quite painful. hope you askfor them divvi
Joe, It's awful to read about all of her problems,.... and she is only 72. (I forget how long she has been diagnosed). Is she able to walk at all on her own or is she completely bedridden? I hope you are getting some rest during this time she is being cared for by others. I don't understand why she has to have a pic line into her heart. Surely they don't expect you to care for her with that in place, do they? So so sorry.
Nancy, I'm sure this is just a substitute for the hand IVs and so will be removed when she gets discharged. Divvi, the way I understand it, restraints are just not really allowed unless o.k. by the dr., the hosp. pres., and Obama. They won't even put up ALL the 4 side rails. You have to leave one down. Stupid! I will ask about what you said, though. Thanks all.
it must depend on the hospital then, we used them with much success. and it was very easy to undue them with the special knot they use to have them off in an instant. it was much easier to 'softly restrain' rather than have wasted hundreds in meds that ran into the bed after being pulled out and the constant damage to the arms for iv/s. divvi
Whaaat? they are not allowed to put up both side rails? When my DH was in the hospital in Houston, not only did they have to use the wrist restraints, they NEVER let anyone leave a side down unless they were working with him. It's a safety rail, and hospitals do not want to be held liable if the patient falls out of bed.
Are you absolutely certain about this, Joe. I realize you have reached the last knot in your rope. Your advocate is the case manager assigned to help you with your wife. Are you in the Richardson hospital or a small clinic. Wish I could help you. YOU need a strong willed spokesperson to speak up here. We call it "Girl Power!" :-)
I wonder if the pick line was inserted so that it goes 'toward' the heart rather than into the heart. Some people are fed through this line when they cannot eat normally. My granddaughter had liver cancer and had a line in her stomach. (She was only one year old) and we pumped antibiotics in through this port. As you said, it prevents multiple pokes, and I'm sure her skin and veins are very delicate. Bless her heart.
Nancy, these beds have 4 separate rails, 2 at the top half of the bed, and 2 at the bottom half. You can only have 3 up at one time, not all 4. You may be right about just 'toward' the heart, but I'm sure the nurse described it as going in the heart. I'll verify. She is in the Richardson hosp. which is now part of the Methodist group, or whatever they are called. Happened just recently.
The Methodist hospitals are good hospitals. Please understand that I don't know one thing more than you do about these hospital rules,..just like you, I question every little thing that doesn't sound just right. When my DH fell and broke his hip last year, and had to have a new one "installed", I tried to get him into the nearby Methodist Hospital-NW, and it was full to overflowing..and they were not accepting new admissions. In the past, he has gone to the big Methodist Hospital in the Texas Medical Center. I wonder if they have Nursing Facilities..etc. Hyatt is big into this now, - think they have one in the D/FW area. Don't forget what Divvi suggested, .... ask them about Hospice. This would be no cost to you and a great opportunity to get out every day.
TJ a hospice patient may have all side rails up. A pick line goes into a major blood vessel that goes to the heart. It's great for long term use. Sorry for the decline.
TJ, I second what divvi and nancy said about hospice. They might have a lot of help and support to offer you. It's worth asking the doctors. We're here offering all the e-support we can. Please keep us posted.
Update: She's doing fine, just trying to get weaned off the Dopamine for bp. She will be moved off the intermediate care floor to a regular room probably tomorrow. Then when she is off the IV she should be able to go home. I suspect they will get some home health care for the usual 4-6 weeks for us because she has a small pressure sore on her tailbone area I've been trying to treat with Neosporin and a band-aid for several weeks now. That should get her a nurse once or twice a week, and an aide for bed baths. That will sure help me, too. I got some apple-flavored Pedialyte to try on her, and I'm going to initiate a program of getting her to drink ANYTHING every half-hour or so. I think she doesn't like to drink because it needs to be thickened, and she doesn't like to be filling up her Depend pants all the time. Thanks again for all your help and support, you guys!
Update: She's alert, eating well, but they're giving her potassium and....great, I don't remember the other thing...'cause they were low in her blood test this morning. Every time they reduce the Dopamine, her bp drops, so they have to boost it up again. No idea when she'll be able to go home yet. I have a call in to the dr. to call me.
Just a reminder TJ, this is a perfect time to see about some in-home help. She would come home to it being in place, and probably adjust easier to it. Plus, it would take some of the stress off you and give you a little respite time. Talk to the Dr. and to her Case Manager to see what's available. Finding out commits you to nothing, but it might just improve your situation.
I have held off starting my med due to the crisis du jour 4 days ago, plus it being a holiday weekend. I hope to start tonight. I spent the night at the hosp., and am home now to clean-up and eat. Yesterday she vomited about a half hour after I left for dinner, and when I got back, they said they had an x-ray taken to make sure she didn't aspirate. She's still in the intermediate care unit, waiting to get weaned off the Dopamine for bp.
Joe, I've been away from reading and posting for a few days so just read about your DW and the current problems. I am so sorry this has happened and pray things are getting better, both for you and your wife.
Joe, I take my antidepressant in the morning. If that is what you are going to take, doublecheck if morning or evening. I hope you can start it soon. I don't think you will notice anything drastic with starting it so I hope you can start sooner rather than later.
TJ- Just wondering how you are coming along with the meds.... Just thought you may want to get a copy of the book "Depression for Dummies".....think it may work??
Phranque, you mean if I read the book I won't have to take any drugs? I'm for that! Imohr, I plan to start tonight, since it is the weekend and both kids are available in case of any unusual reaction. Today is homecoming, and in 104 degree heat. Wonderful! Thank you my friends, for all your support.
Homecoming….what a disaster! I took one change of clothes and one Depend, and her tennis shoes to wear. Two nurses got her dressed, except that her feet were too swollen to fit in her tennis shoes (even untied), so no shoes to wear. After they got her dressed, which involved a lot of rolling back and forth on her flat back, she threw up her lunch (had about an hour earlier) plus a bunch of phlegm, all over her top, and while doing that, she pooped (rather loose) in her Depends, and had to be changed to an adult diaper, a hosp. Gown, and scrub pants (cause her pants got a little dirty too). Then we had to leave in the hottest part of the day, a wonderful 103 degrees, after the car sitting in the sun for 2 hours because there were no shady spots when I got back from lunch. Now I’ve got to get her 3 prescriptions, but I have to take her with me into the store ’cause its too hot to leave her in the car, and so I need to re-dress her in order to do that. I think I will wait until tomorrow morning when it’s cooer (80 degrees). And I have to see if I can get her to drink enough fluids to make up for what she lost vomiting. I’ve done enough. Why doesn’t anything go right? Why is it always wrong? All I need is ONE LOUSY person to help me with all this. Where are they? God help me.
Joe...I wud call your pharmacy, and explain your situation and ask if some kind hearted soul could possibly deliver it to you...sometimes, some of the clerks may be happy to help/ Sorry about your problems today...sounds like you have a bit more to handle than you should...Wish I was closer so I could go over and help you....grab some more rope and hang on tight...you certainly need it...and if you tell me the pharmacy name and tellephone, I will gladly call them and give them the super sob story and I am sure they will deliver....
Nice idea, phranque, but first they have to get the prescription in their hands so they can fill it, then they would tell me, I'm positive, that they don't deliver or don't have the staff to accomodate that, so it's wait until tomorrow, or grab some of that rope and hang myself. I appreciate the offer anyway. What a life. (sigh).
TJ.....the rope you have has been specially engineered not to fit around your neck.....the minute it senses the neck, it breaks..Do you have a neighbor who could drop off the scipts at the phcy?? that way they could fill them and you cud pick them up later...or if you have cabs, they will pick up the prescription and drop it off at the phcy for you...but that might be expensive...just trying to help, and remember that the rope will be very uncomfortable if you tie it around your neck....it stretches alot, and the fibers are very itchy, and then you would be known as a redneck......
PatB, I totally forgot about CVS pharmacy. Yes, they are a little farther away, but do have a drive-in service. I think I will change pharmacies permanently...tomorrow morning. I'm too tired right now. Thanks for the help! Does anybody deal with CVS? I buy all my caregiving supplies there. Is their pharmacy good?
Oh great! Now my back is cramping up. I guess from lifting her after having a week off. What next? How about a nice heart attack to put me out of my misery? Then no more caregiving...yea!