Hi Eileen, just checking in to see how things are going..........

I personally doubt the resperdol is causing the weight loss -- I believe it's just another facet of the disease. I agree, you want to keep him hydrated so keep giving him straws if it helps. I would argue against a swallow test -- at this point why would you want to put him through that? Choking is also another manifestation of AD. Their body simply forgets how to do it, and so they choke. Thick-It helped with my mom when she started having trouble choking. It may be worth a try. I'm pretty sure you can find it at a medical supply store.

As for the PT.....since he does get him up and walking I hope he will continue to come. Movement is a good thing. Particularly when there's someone there who knows what they're doing. And if your brothers feel confident they can put him in a chair and haul him outside, more power to them. As long as they understand the responsibility they would have to assume.......

I'm really glad you had a enjoyable visit with your nieces and could relax a bit. Every little bit helps. And I'm glad you got some help from your doctor for yourself. Most caregivers need some help to take the edge off -- me included when I was in the thick of things.

You remain in my thoughts and prayers, Eileen. (((((((((((((hugs))))))))))))))

Hello Eileen,

My heart goes out to you, I keep reading your posts to see how you are but I don't have any wisdom like the others do, so I'm just learning and keeping things tucked into the back of my brain for when my mom is there. I'm so glad you have these wonderful ladies to help guide and support you.

Please know that my prayers are with you as you travel this very difficult journey.

~Kelly~

Eileen,
How are things going? You ok? Give us an update when you can.

Jackie

Hello There,

Sorry for the delay - Its been up & down. Dad is the 'Come Back Kid'. He's off all medicines except Resperdol & Xanax & a mufti-vitamin w/o iron.
His OCD is slowing down and he's pacing from the living recliner to the bathroom to the dining room and back again. Longer stretches of rest in between the toilet OCDing - which is good.

Thanks for the heads-up on Thick It - I ordered it from Walgreens online - now if Mom will only use it on him.
We did start Dad on water with electrolytes & Gluscerna(sp) - its like Ensure for diabetics. He's using a straw for all liquids now. And he has to be hand-fed a lot more frequently - if not - he just says he's not hungry and won't eat. Jello, applesauce & ice cream are his favorite - 'eat by himself' foods.

He goes to bed at 6:30 p.m. and gets up between 7-9 a.m. It gives Mom some quite time at night.
We found him lying on the bedroom floor only once since I last posted.

The hospital bed situation - sigh - I was so happy the Friday(Good Friday) before Easter. Mom said the nurse was ordering the bed for Dad, you guys were right, it is covered by Medicare.
We told the nurse, who told Mom that it needed to be ordered ... see how she'll listen to others and not us!
Well 2 days later then she says, no not yet - then we start cleaning up around & under the old bed as if it were coming - and then , its no again.
I give up.
So long as he's ambulatory, we'll keep the old bed. When he becomes bed-ridden we'll have to get a hospital bed.

In between all this my husband & I have had some 'disagreements' - I'm over there a lot. When I get home, dinner has been soup & sandwiches. I'm sure he's feeling neglected and worries about me but... his anger comes out in weird ways.
He didn't talk to me for 2 days because he didn't agree with the 5 year payment plan Mom chose for Dad's interment. He does the silent treatment when he's upset - I guess it better than the yelling & getting physical like my parents did... right?!?

Now my Doc called with blood results and said I'm on the road to diabetes - I have to go back in a couple of weeks to work out a plan of action. We caught it in time thank God.

Well, this sure sounds like a soap opera. Thank you all for support, suggestion, and kindness. You all seem so close to me - even tho we're miles away.
Thank you for allowing me to vent.

I wish you all Peace and a beautiful Spring.

Peace

Sat 8:15 pm - Dad's going to Er again.
BP was 90 over and his sugar was 300+. He's mumbling & can't swallow. Another mini-stroke? I'm not going to the hospital until Ron calls me back.
This is crazy. What can we do ?
Grant me Peace
Eileen

Oh, Eileen. the roller coaster ride does seem to be never ending. As soon as you get "used" to one thing something else pops up Sometimes the only thing you can do is hang on, but you knew that already.

So, dear friend, hang on and take care of yourself. You need to be as good as you can be (and I do remember how subjective that is). We are all here for you any time you need to vent or ask questions, and will do anything in our power to help you shoulder your burden.

((((((((((((((((((((gentle hugs)))))))))))))))))))))) and, always, prayers.

Waiting to hear about your dad. It does seem like they always show an improvement right before some big catastrophy.
I'm concerned about your blood work too sweetie. Hope you are following doctors orders.

Thinking about you Eileen.

Hello Friends,

Its been a hell-of-a 5 days.
Dads home now - Hospice is here - the long goodbye.

They think one of the reasons his BP dropped was because he was dehydrated and anemic. He has a huge hematoma on his left hip down to his knee. He was given 4 units of blood for it.
X-ray of chest, barium CT of his hip( nothing broken), ultrasound of his kidneys(tumors) and then the swallow test (he failed). He will eventually silently aspirate, get pneumonia and go.

We decided not to place a gastric tube into his stomach. The case manager set up the call to hospice for us - Mom finally agreed - they spent 2 1/2 hours explaining, listening ... I feel relieved that someone understands. They have all his medical records now - it won't be like starting from square-one each time.
If he falls again (he still wants to walk back & forth to the bathroom) we call hospice, Not 911.

He is so unsteady on his feet, but he still wants to stand to urinate. We have to watch & walk with him constantly. He has forgotten how to sit for BMs, so we change him standing up. Everything is so loose.
There can be no more, "just let him pace back & forth by himself' - I believe he fell MANY times before all this.

I was so naive - he should have been watched constantly BEFORE all this. I believed or wanted to believe my Mom that he is 'moving slow but OK'.
I should have been more forceful in demanding Hospice. Mom is so tired, she has no patience with him anymore. She can be a bit rough in speaking & handling him - which makes him even more agitated. She pokes and punches his arm to get his attention. I say, "touch his arm and say his name loudly". She says, "don't tell me what to do".

I know, she's tired. I know me & my siblings are caring for a man who never cared for us. He was verbally, physically and overtly-sexually abusive to us. Lots of memories & feeling are coming out now. We all are trying to keep him calm, comfortable & pain-free. But, when you're physically tired, thats tough to do.

He's a sick frail old man and a fellow human being - - regardless of what he did in the past.

I will try not to take to heart what we might say to each other.

I don't know how to begin to tell you about the 8/12 shifts at the hospital to keep him calm so they wouldn't have to strap him down. The constant repetition to reassure him. Watching to make sure he didn't pull out the IV or the monitor leads (he did anyway).
With each sift change, having to re-tell them, he's diabetic, he's allergic to penicillin, he needs his Xanax, pills have to be crushed, his food has to be soft because he has no teeth, speak loud and slow he's deaf ... and the most obvious .. he has Alzheimer's!

Thanks for listening - got to go for my 8 hour shift.
You guys are my strength - many many thanks
Eileen

I'm so glad that hospice is finally involved. They can be a huge help.
I really have to give you all credit for taking care of your dad considering the past. You are a much better person than I am.
I hope that you are getting a chance to breathe a bit now. Hospice does provide volunteers to come in. Please take advantage of everything they have to offer.

I'm glad you finally got hospice in. They should be a big help if you mother will let them.
It sounds like you have your hands full.

Hang in the Eileen you can do it. We will all be praying for you, mom and dad.

Dear Eileen,

I tried to post a reply to you back in February and for some reason it didn't post. My mom was in a geropsych unit after Christmas and then she went to a nursing home for physical therapy towards the end of January. My mom passed away on March 25.

I just wanted to let you know that my heart goes out to you, your mom and family. I'm glad that Hospice is there to help. My mom's psych nurse said to me 2 days before my mom passed that often times people with dementias have a period of agitation, confusion, hallucinations and then they calm down before they pass. My mom lost her ability to walk and then her swallow was affected and she did withdraw from her surroundings. She still knew when I was with her and she was at peace towards the end. She had aspiration pneumonia.

Eileen, you've been a faithful, loving daughter. I think that you're an exceptional person to care for your dad in light of the past. My father was an alcoholic and he was verbally abusive for a while, but I understood the emotional pain he was going through and forgave him a long time ago.

God will bless you for honoring your earthly father and keeping His 5th commandment.


Take care of yourself too, Eileen.

Peace be with you,
marcie

So glad hospice is involved. I can never thank them enough for all the help they gave me when I needed it most. Having a hospital background I didn't need the physical support as much as the emotional support and they were there for me all the time. I hope and pray your relationship with them is as fruitful and comforting. I hope mom will accept their help in all areas, too.

You have been and continue to be a wonderful daughter, and you are number 1 in my estimation. You remain in my thoughts and prayers.

Eileen,

I've been away from the board for a while, and I'm sorry to hear about all you're going through. This disease holds a lot of people hostage, not just the patient, and that lack of respite is just as draining as anything else. I'm glad you have managed to get some help, and even though you're still spending lots of time at his side I hope it is some relief to have others caring for him too. This must be very hard on your mom too, and I hope she's doing well.

- Jezza

Hello Eileen,

I'm sorry I haven't been online of late... between work, keeping the condo in showplace cleanliness AND trying to find a place to live once this place is sold has me hopping. Enough about me.

I'm so happy to hear that Hospice is involved. Encourage Mom to talk freely with the hospice social worker to give her an outlet for her own fears, etc. And, like the others here have told you, you are a caring, loving daughter and you are doing the best you can with what you have to work with.