Eileen,
So glad hospice is now there to advise and help out. The social worker that works with hospice is a very valuable player. Talk to her or him when you can, and have your mom do the same. The comfort they give you is remarkable. And they help with any guilts you may have, although in your case, geez, you are quite a daughter!!! God bless you for what you do my friend. You are a wonderful daughter in every sense of the word.

OH I remember so well the shifts when Mom was in the hospital. Did it for the same reason. And to re-explain everything all over again was the most frustrating thing especially to hospital staff. Wouldn't you think that's what patient charts are for?? Go figure.

One thing I do want to mention to you about calling hospice versus 911. Whenever Mom ran into anything that I knew I couldn't handle, passing out and not coming to, and a few other scary things, I called 911. They knew that it was just for them to examine her, and to check her vitals. They, 911, actually encouraged me to so I would never have to be alone in case it was at the end for Mom. She had a DNR, so it was just to have someone their of the medical profession just in case. I always refused transport, and of course had to sign a paper each time, but they were invaluable to me many times.

Yes, you do call hospice, but you have to remember, if something scary comes up, especially for your Mom, hospice does not get there as quick as 911. Many times they take well over an hour to get to you and sometimes longer especially at night or during the night. And as long as you don't have your Dad transported to the hospital, you still get to keep hospice. If you do have him transported, then of course the paper work starts all over again.

Now keep in mind, the above is what my hospice said I could do. I don't know if all are the same, but you may want to find out before the fact. One time Mom fell on the floor, had a bowel movement, passed out, and the only ones here were me and one of the helpers. No way we could get her cleaned, back in the chair etc.

I called 911. They checked her vitals, she came too, they wrapped her in a few sheets, brought her up in the bed, and we were able to clean her up. Hospice could not have provided that for me. So please, find out about certain things like that before anything comes up.

Well my friend, I do know what your going through, and I feel for you. But you will get through it. But please Eileen, don't do what I did with Dr. appts. and such. Get yourself taken care of. My back and my knee took a toll, and a few other health problems that I let go.

As far as hubby, well I have to tell you, he does understand, he just doesn't know what to do for you anymore. Sometimes their only recourse is just to not talk. They don't mean to, but I think it's just their helplessness that makes them like that occassionally. Just try to give him some attention to make him feel you haven't forgot you have a husband too. I think that's all they really want.

Keep in touch. WE know its hard. We're here for you.

Jackie

How are things going Eileen? I just got home from a visit to Theresa's in Chicago. The next time I get there, maybe we can get together for lunch, if you can find some free time. I was able to see Jackie while there and she hasn't changed a bit, still smart and sassy, but a lot of fun.

Let us know how you, your dad and mother are doing. How is hospice working out?

Hello Everyone,

One day at a time here. Hospice people are great - very nice, responsive to questions and material necessities.

My sister Sharon & I alternate every other day from noon to @ 8:30 or until he falls asleep. My brother Ron goes home @ 10 and is there is Dad gets out of bed in the night. We are still working with Mom in regards to allowing a hospice worker come 2 hours a week.
Mom seems more relaxed - she gets to sleep, read or watch tapes of her shows while we watch Dad. The simple things she didn't get to enjoy before.

Dad is getting the majority of his water from jello, applesauce, frozen ice, etc.. He still gags on water - won't get it with Thick It. His appetite is coming back - but he eats well one day and then won't the next.
He's amazing. He still wants to stand up to pee. He drops his pants & diaper. You have to stand behind him but its a good time to check the diaper for poop. Sometimes he poops standing up. I'm learning to watch for the 'signs and smells' for a poop explosion. Everything is so soft.
He still wants to pace to & from his chair to the bathroom. Everything in slow motion. You walk behind him constantly. I'm getting my exercise, that's for sure. We don't have to worry about bedsores with him.

The podiatrist came and cut his toe nails yesterday. He was supposed to be here at 4 - Dad decided to go to bed at 5 - the doc got here at 6 and cut his toes in bed anyway. Dad was yelling and mad , but I calmed him down. So glad - his toe nails are so thick & hard to clip - plus with diabetes you don't want to take a chance with cutting him. The doc said he will come back in 9 weeks.
The nurse comes once a week - she thinks dad might last 3 to 6 months this way. How much longer?

This waiting ... expecting each day to be 'it' ... I hope I can pace myself for the long haul.
I feel terrible for thinking this way - but when will it end? He gets to the brink, gets saved and starts over again.

Trying to get used to all the meds I have to take now ... probiotics, anti-depressant, anti-anxiety, diabetes - watching my diet & exercising ... all I want to do is sleep. I feel like a mess sometimes.
Today's my day off so I'm going to work in my garden.

Thanks for listening. I know you all understand.

Take care
Eileen

Eileen,
You are so lucky to have your sister and brother to share the care. I'm really glad your mother is getting some free time also.

I remember Bill wanted to stand to pee also. The problem was that he wanted to stand two feet in front of the toilet. Several times I had poop and pee to clean up after he went. I remember one time he was standing and I was cleaning him when he started going and I ended up with a hand full of poop. Never thought I would be able to stand and catch poop in my hands. Thank goodness for latex gloves.

No one know how long they have. I'm sure hospice was about ready to pull out four days before Bill died. Only God knows the answer to "how long?"

Make the best of your day off. Just let us know how you're doing.

How's it going Eileen?
I'm heading north on Fri. so and you know how my internet is up there. I just want to check on you before I go.
I hope hospice is working out ok.

Hay There,

Things have stabilized.
Dad is on Namenda and Xanax - that's it. He seems more alert, more stable on his feet, and much more talkative.
His BMs have normalized in consistency and timing - he even sits & goes my himself. I still have to clean his hands & check his backside & change the pull-ups.

He's much better than he was 2 weeks ago.
He's more aware now and gets mad when I check his pull-ups or follow him to the bathroom. He says he feels so ashamed. He points to Mom & says, 'I worry about her, she's in so much pain.'
It appears he gets most of his water intake from jello & pudding - he still sips water & coughs & sometimes sounds like hes talking underwater. His appetite has come back.

This will sound horrible but, in some ways it was easier thinking, this is it. Anytime now he will pass.
Now, hospice says he could on for awhile like this. No fluid build-up in the lungs.
I guess we have 6 months with hospice and then back to home help if it stays this way.
Sometimes I feel like people think I'm a lier or drama queen - he was so bad - things were so dyer ... and now .... he's stable. People must think I was exaggerating - but I'm not. I had a 'friend' say, isn't he dead yet?

Dad fell again Thursday and Mom called hospice and they told her to call 311 non-emergency - firemen came. If he keeps falling when I or my sister aren't there, what's the next step? How can he be so bad one minute and then so 'ok' the next?!
When I get there at noon, I can tell its such a relief for Mom. I stay till he falls asleep - anywhere from 6 to 9 p.m.. I'm trying to set up a schedule with my sisters, the CNA & nurse - so someone is always there - but its hard.
We have our own lives, my car is on the fritz - how are we going to juggle this?

I truly have been taking it one day at a time - but I need a schedule of some-kind - but with Dad - tomorrow he could be on dying again - who knows?

Thank You All for the kinds words & support & thoughts for us. It means a lot to me.
Eileen

Eileen,
Don't worry about the six month thing. Bill was on hospice for almost a year. And The last time the nurse saw Bill she was commenting on how good he was doing. The was she was talking I thought she was thinking of taking him off hospice.
After she left that day he went to bed and never woke up again. I guess I don't have much confidence in their predicting how much time is left. I wish she had told me Bill only had two days but he was doing good the day she was there. I think if they're not agitated , the nurse thinks they're doing good.

I hope your dad didn't hurt himself with the fall. I'm sure your mother likes having you there. I enjoyed when the girls would come over even if they didn't really help with their dad. It was just nice having them there. I think two of the girls each helped me change their dad once each. I'm sure they would have helped more if he had lived longer being bedridden.

I'll be thinking of you while up north even if I can't get back here as often. Remember all you can do is all you can do. We never know what tomorrow will bring.

Thanks so much Joyce. It helps to hear your real-life experiences. I feel safe knowing hospice is around ... but ... if they got to go .. oh well, we'll survive.

Thankfully he wasn't hurt from the fall . With all of his falls - he has not broken any bones!

Have a wonderful time up north - is it the U.P.? My Mom's Mom was from Iron Mountain.

Take care my friend.

Eileen

Hi Eileen,

It is always so good to come here and find an update.

It doesn't sound horrible at all to me that you would feel calmer and more peaceful thinking you were in the final stretch of this long journey........... I don't know how many times I thought "this is it" only to have mom bounce back. And you do feel like you're the boy who cried "wolf" and figure people will think you overreacted, or worse, lied (for what purpose I can't imagine -- why would we lie about THAT?) But you don't need to worry about that here. We all know that it really IS that bad today, but tomorrow may be a completely different story.

My mom was on hospice for 2 1/2 months -- I waited a really long time before I called them in (being superwoman I had it all covered, of course..... ). I was really glad once I did and they were extremely helpful, but not at all accurate about predicting how long she would last. Really, how can they be? (Most hospice care involves cancer patients where the disease tends to follow known patterns and so it's easier to predict -- AD follows NO pattern and they just don't have the experience with the disease to give them realistic guidelines.) You already know your dad will be up and down, good then bad. And you know the ups are never quite as high and the downs are lower each time.

My mom had a drastic decline 2 days after engaging hospice. She rallied but that decline marked the end of her ability to walk. She leveled off and would have small dips and smaller upsurges, a very bad day when I thought we were going to lose her followed by her most lucid and uplifting day in months..........these ups and downs continued until there really weren't any more "ups" just more and more gradual "downs". One afternoon she fell asleep and didn't wake up again. And so it goes for us all.

You and your family are in my thoughts and prayers. Hang in there and come here for relief as often as needed.

Eileen,

Glad to hear from you. I envy the cooperation with your siblings. The nearest relative besides us lives over 2 hours away and works so many hours that we were lucky to have him show up every other month. There was lots of verbal support, but I really needed others to help out as I had most of the burden on me with FIL.

Keep us posted dear.

Hi Eileen,

Oh, this all sounds so hard. I know what you mean about him doing so well one moment, then you think the end is right there the next moment. AD is so strange that way. One dear lady at my mom's home has done that, she was so bad, we really thought we were going to loose her, now she is responding to us, talks to us, puckered up to kiss me the other day, so very amazing. Before we couldn't even get a response out of her. It is sortof bitter/sweet though. My mom does that too, although not as bad. She can be agitated, sleep through the whole visit, totally confused to the max, cheerful, talkative, weepy, bawling, demanding, sweet, you just never know what you are going to encounter when you go to visit.

I'm sorry this is all so hard on you and everyone, including your dad. You are an amazing daughter, thanks for being such a wonderful example.

Take care and thanks for keeping us informed, it is good to know how you are. ~Kelly~

Hi Eileen,

We're all following your story, and I'm glad to hear that things have calmed down for the moment. I hope you can find a little peace amidst the trials...

Hi Eileen,

Yes I'm up North again. Not the UP though. That was Bill's old stomping grounds and I really don't want to go back without him.

I hope things are still going good for you. Take care of yourself and when I get back to town I'll check back in to see how you're doing.

Hay There Support Group,
Things are going along here. No major changes to report.
Dad is drinking maybe 16 oz. of water a day - but eating tons of jello and other semi-solid foods - so he's still peeing & pooping.
He's getting more aware or should I say more sensitive when it comes to wiping, temperature and holding or touching him. He'll scream/yell if the wipes are too cold.
Yells at me to get away when he needs help-up from a sitting position. Yells when I try to change his clothes (he had a shirt on for 3 days).
I can usually step back, pause a moment, and resume as if nothing happened.
I have learned not to fight it - hence the reason for the shirt he slept in & wore for 3 days.
Thanks for listening.
Eileen

You were right about stepping back and then resuming. Maybe you should rephrase statements as a a suggestion and not as a command. That would usually work with Old Navy.