Eileen,
We did get a hospital bed while Bill was on home care and medicare did pay for it. We also had BC/BS so I'm not sure if they paid anything or not, I just know that we didn't pay anything.

Thanks Joyce & Jackie for the info - my minds in whirl.

Dad was into ER again yesterday - wasn't speaking - 3 hours later they were at home.
Mom took him out against the advise of the attending doctor - she signed a wavier of responsibility. My 2 brothers were there at the time, so I wasn't going to go there unless he was admitted. She said he was very combative and she couldn't take it anymore and would rather have him die at home. I feel that if I was there, I could have at least took her out of the room and let ER personal deal with Dad's screaming. Who knows?

At home his BP was very low & the sugar was very high. Ron thought it might be insulin shock so he called 911. I'm hearing from 3 different sibs that it was another mini-stroke. He re-gained his speech & mobilty & his Bp went back to normal once he was in ER.

Going over there today and will meet with his visiting nurse. I wasn't there Monday, so I don't know what really happened - each person tells a slightly different story.
Trying not to get upset, but too late. My IBS kicked in last night and I have 2 boils on my neck - I look fabulous

Thanks again for listening. I know we probably sound like a bunch of fools - doing all the wrong things.
Thanks - take care
Eileen

Eileen,
The first thing I want to say is you do NOT sound like a bunch of fools. With AD there really is no right or wrong. You do what you have to do when you have to do it, and decisions are made quickly with no time for thought. So you and your family keep doing what you all feel is the best for all.

When you start telling me things about your Dad now, it reminds me so much of the same things I went through with Mom. We also one time checked her out against the hospitals wishes and had to sign a waiver. The mini stroke thing we think also happened with Mom, couldn't speak and when she did, slurred alot. It got better in about a week, but her speech was really never the same after that. And your right, between nurses, doctors and family, each do have a different story. But you know what, at that point it doesn't matter much. My decision with Mom was that unless she had been healthier, I wasn't going to treat the stroke with medications and such. It was my greatest fear having a full blown stroke, but I had to just let nature take its course.

Eileen, stress is a horrible thing, and it affects us in so many different ways. To have your IBS acting up and boils appearing, you know your really stressed. Just a suggestion. If you aren't already, why don't you talk to your doctor about some meds for yourself. I was on Zoloft, still am, and I have to say, wouldn't have survived with some help from them. And an occasional glass of wine wouldn't hurt either.

And once again, you are doing nothing wrong. Just trying to cope with this the best you know how, and believe me it ain't easy. Too much info is just as bad as not enough. So for now, take care of you, help your Mom when you can, and put the rest on the back burner until your ready to deal with it. And of course, let others take over when they can.

Here for you,
Jackie

Jackie is right Eileen. You are not doing anything wrong. As long as you're doing what you think is best for your dad.
I was lucky in caring for Bill because as dumb as it may sound he was in good health up until the last two months. Even then there was never any reason for hospital care.

She's also right in that you should get something for yourself to help you get through this. I was on lexapro for about six months but had to go off of it because it screwed up my thyroid meds. Now I have my xanax just for those times I don't feel I can cope.
Take care of yourself or you won't be able to take care of your mother or your dad.

Just jumping in to agree with Jackie and Joyce. There is no right or wrong with this disease. All there is, is doing the best we can.
I'm worried about you though sweetie. Please talk to your doctor.

I’m nodding too. And I’m sure ALL of us following in the shadows continue to surround you in prayer to ease your whirl and give you strength to face each day.

Please don’t be hard on yourself, Eileen. Sometimes we can’t see the forest for the trees, but look at all the help you’ve already brought in for your Dad AND Mom, plus your brothers being there is a help to YOU too. Even with the brick walls you’ve hit, changes are happening and your Mom is even liking (some of) it. At least she likes having the people around. It all takes time. You deserve a big pat on the back!

Now you have to take better care of you. If the meds route isn’t an option for you, could you and your brothers work out something to take turns so you can get some real, mindful rest. You’ve held the reins so long I know it’s hard to pass them on to anyone else, but really being able to turn everything completely off, in your mind, for hours or even one complete day is very important for the body.

Thoughts and prayers continue for you all.

Hay there - everything's the same but different.
After being seen by the home doctor - he's off all BP & sugar meds. 1/2 the amount of the diuretic, same amount Xanax and now Resperdal was added at night only.
His OCD to the toilet is really bad now - and the where's my food matra. And of course hes not hungry and he doesn't go.
I have a break today - going to visit with my nieces - they are off for spring break this week,

You guys, how can I thank you enough for all your support?
Thank you
I'm taking anti-depressant & Xanax now - seems to be helping.
Peace
Eileen

Eileen,
Doctors took Bill off all BP meds in 2004 because his BP was going way too low.
Today I was reading one of my earlier posts and I was talking about him going to the bathroom and standing in front of the toilet. I didn't know if he forgot what he was supposed to do or if he was going in his depends.

I'm just glad you're getting a break and that you're taking something to help you get through this.
How is your mother doing?

Take care and keep in touch. I may be in Chicago the week after Easter week. That's two weeks isn't it? Theresa's son will be 16 and I don't want to miss that. Although I don't think he really cares. I'll let you know when I'm positive I'm going to be there and maybe we and Jackie can get together for lunch.

Hi Eileen,

I haven't been on due to working a lot of odd hours. What Jackie and Joyce have said is true.

You might want to set up a meeting with a hospice worker with you there, and just tell your Mom that she has to do this for your peace of mind. And if the worker doesn't find him a candidate for their services, then you'll leave her alone (for a while), but we need to have him evaluated all the same. That is what we had to do with Dad... he insisted that there was nothing wrong with him... but I wanted to get the opinion of someone in the field.

I know that one of my clients is now on hospice. His wife was reluctant for years to have him evaluated, but I (and the children) told her that it doesn't mean that he's dying right this minute. They evaluate and help with things that she was struggling to do by herself...bathing, respite, supplies (she really needed the help with that), visiting nurses and doctors, too. Her biggest help is the fact that the social worker talks with her concerning her own mental and physical health... providing her with an outlet for her emotional stress.

I'm so glad to hear you are getting a break sweetie. Now go out and have some fun!!

Hi Eileen,

I'm just checking to see how your day of fun went and how things are going right now with your father. I do pray that things are settling down a bit (if one can say that with ALZ).

Hi Everyone,
Had a great time with my nieces (ages 9 & 16) - fun & silly - good to remember that life goes on.
I'm home today - hubby took the car in - we're down to one car now so we got to keep the old girl goin' (she 10).

Dad is losing weight (the Resperdal?) - he moves too much to get a reading on the digital scale. I have an old needle-reading scale - got to remember to bring it.
Moms not eating much either - soups & salads - but small amounts. She chokes on her food if she eats too fast or too much.
She still refuses to call or have the GP call hospice. Finally convinced her that Helping Hands is NOT a hospice organization - hard to say if she was lying or actually believing that it was.

Dad's OCD is horrible - constant up & down to the bathroom - then forgets why he's there. I try to engage him with the memory book, the view outside the window - which works only for a short time.
He can barely get up to a semi-standing position and when he does he says he's going to fall. At this point, all I have to do is hold onto his belt in the back and walk with him - for security I guess. He walks VERY slow and talks to himself - hangs onto the door jams, leans against the walls for support.
The PT, Tom, still comes 2x a week and watches him walk and gets him to do leg lifts & marching in his recliner ... and get this ... Dad is considered ambulatory. I guess unless you're laying on your back like a dead fish - you're considered movin' and groovin'.

Tried enticing Dad with Ensure vanilla - no chocolate or artificial sweeteners anymore - causes explosive diarrhea. Maybe Mom will use it, the stuff's expensive.
By 4 p.m. he did eat a little and seemed to settle down - I could get him to sit and talk for longer stretches. Moms says he does eat a big breakfast - I guess I have to believe her because I get there by 11.

I keep offering water - don't want him to be dehydrated. He's starting to choke on the water and even sneeze from it. Before, he would hold water (and food) in his mouth for awhile and then swallow - slowly, but no choking.
I got bunch of bendable straws because I noticed that in the hospital, he would drink if brought it up to his mouth.
Right now, he uses water bottles - easy to hold and he likes to fiddle with the caps. But every-time I bring out a straw & but it in the bottle for him and get him to drink - I come back and see that Mom has removed it or tossed it out.
Frustrating!! Getting him to drink is the point - who cares if his spills it? There's enough pee on the carpet as it is - what's one more stain?

So now, do I have to demand a swallow test? ... and from whom?? ... and what good will it do???

He is using the Depends, for now, thank God. The swelling in down - not gone - but down a great deal.
His skin has a yellow pallor - but its not jaundice according to the doctor.
My brother Ron purchased an E-Vac chair on EBay and wants to get Dad out for fresh air - you need 2 men to lift a person in it. Don't know if Mom will allow it or if it will upset Dad. Seems like a waste of money to me.

I guess we kids are all trying to do something... buy something , to make things easier or better. But our hands are tied and we are only 'allowed' to do certain things.
Right now, I'm the laundry, shopping, and house cleaning lady.

In my heart I'm so glad I made him the Memory Book for his Birthday - its something I did without asking Mom for approval - and it works! Its the one thing thats gets him to sit still and talk and engage.

A small victory of sorts - God why am I crying about that??!! Silly... emotions come out at the weirdest times.

Thanks for listening and being there for me .. for all of us.
You guys help me so much
Love
Eileen

Hi Eileen,
I don't know if the resperdol causes weight loss, I think it's just that they don'e eat as much or that the body is forgetting how to absorb the calories from what they do eat.
You mentioned holding the back of his pants when he walks, Do you have a gait belt? That gives you a little more control.

I found the memory book was great for holding their attention. Bill had it next to his chair and would pick it up constantly and look at it. Did you lable the pictures in it? I mentioned before that as the time went on we had to be more specific when naming them. Where I started out with a name, he had no idea who that person was so I labled it with name and who they were. ex: Jack - Bill's brother.

I'm glad you have sibs willing to do their part. At the rate Mom's going you may soon have two to care for.
I'm not sure what an E Vac chair is, but if it takes two to get him in it, what good will it be?

Have you tried Thicken to add to the water?

Hospice told me they didn't consider Bill "walking" when he was having to hold on to things. He was moving and that was all. Walking is what a normal healthy person does to get around.

Keep in touch so we know how you're doing.

Eileen,
Everytime I read about your dad, it seems so much like what we went through with Mom. Also had her on PT for awhile, but I don't think it ever helped her. She was suppose to do the therapy that he showed us everyday, but Mom would never cooperate, so I stopped it. Hospice used to send over a massage therapist to massage her legs, back etc. She enjoyed that much better.

Straws? Mom would never drink from them. Seemed like she drank less with them, and choked more. She started drinking a little more when I added Thick-it to the water or liquid. and seemed not to choke as much if at all. They just don't want to drink, so I stopped forcing it. She just became too ornary when I forced things on her. I left a glass on the table beside her chair with a bottle of water. As she drank it, if she did, I would just go fill it up again. She sometimes enjoyed some of the flavored waters that are now available. Some of them have alot of vitamins and minerals in them, plus flavored and there very good. May want to check the labels. The one I buy for myself now is called Sobe, but it has zero everything and is flavored with natural juices, but it doesn't have the vitamins and such in it. I take that back, I just read one of the bottles and it does have vitamins in it, but no sugar and a bit of sodium, and no calories. To prevent dehydration, there good.

Mom had a swallow test when she was in the hospital last year. Not an easy test for an AD patient. They allowed me in the room with her and gave me one of those aprons to put on for radiation. They have to "on demand" drink a thick liquid, a thin liquid and eat a half of some kind of bar. As their swallowing, they start x-raying. And they can't move around alot. Mom's test at the time turned out fine but that was well over a year ago. But while on hospice they don't recommend it unless you plan on doing something to correct the problem, and at this point, what can you do? Surgery? Don't think so! Lessons on how to swallow? It would never happen!

The gait belt didn't work for me, but I did try it. Mom fought me and the girls so bad, that it was more dangerous to use it than not. The walker worked best with the wheels, and I still held on to her a bit. Even that she fought me on though. When she finally just couldn't walk anymore and I couldn't hold her up any longer is when we got the transport chair from hospice. Very light, and easy to wheel around and fit up at the kitchen table or to get to the bathroom. Don't know what an E-vac chair is either, but I guess if takes two men to get him in that, it might to get him into anything. When Mom "could" walk, she got into the transport chair pretty easily, and even a wheel chair. By the way, I have a wheel chair, a commode,(not from hospice) and some other supplies. If you need any of them, let me know, your welcome to borrow them. I say borrow as now that I turned 60, I'm not looking forward to a life completely without any obstacles! And I have to say, Mom enjoyed sitting outside in the nice weather. NOt for walks so much as just sitting on the front porch. Sometimes it does change their attitude, even if just for awhile. So if you have not purchased that chair yet, give me a call. You can come and get the wheel chair if you want.

Ensure did not do well with Mom, but not for the diarrhea. She just didn't like the taste. I would put it in a blender with ice cream, bananas - anything to disguise the taste. But she could not down it. It was really awful though. Try those little ice cream cups. Mom used to love those. I bought rainbow sherbert, chocolate and vanilla. It was a small portion and I think she didn't feel so overwhelmed with food seeing that. Big portions of anything seemed to really turn her off. Even her sandwiches. I went from whole cut in half, to just half and then I used to cut them in quarters and just try two quarters at a time. Seems like the smaller everything was, the better.

Eileen, we all really do know how you feel. And these are only suggestions on what we did. Like we all said before, every patient is different, and what works for one, doesn't for another. But most of my ideas were from others on here, and most were helpful. I know your hands are tied more because of your Mom. But you have to just a little at a time introduce some things to your dad when your Mom is watching, and if she can see that some of the stress is reduced because of something that works, she may give in.

Try not to spend too much money on supplies that you may need. She needs to be convinced somehow that hospice it not for dying. Show her what your brother spent on that chair, and show her what you spend on depends and other supplies that you need. And let "her" foot the bill. That right there may convince her that hospice is the way to go. I really do know how she feels though. It took awhile to convince me that hospice was the way to go rather than the other way. We all think of it as dying, and I sure she's just not ready to accept that yet. I really do think if you can just get someone in there to just talk to her, she'll understand it all much better.

Well my friend, I hope I didn't confuse you more. Didn't mean to if I did. Oh, and glad to hear your on some meds, they do help. And again, please, if you need any supplies, check with me before you go out and buy them.

Jackie

I never used the gait belt either, jackie. Bill couldn't use the walker either and he pretty much went right to the wheel chair when it got to the point where he couldn't walk by himself.

I'm with Jackie, Eileen. What I suggest is just that a suggestion about what worked for Bill and me. Not that you have to do it. You'll discover on your own what works best for you.