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Old 01-16-2009, 08:53 PM   #1
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Status update!

Well, hi all!

I have missed you all so much! I literally pray for all of you every day - even though you don't see me on here much. Between computer issues and the fact that I need a 40 hour day so bad - seems like I just don't get to be on the 'puter like I used to. No matter, though - I still read your posts when I get a chance.

Let's see...where did we leave off? Oh yeah. I got dad enrolled in day care 2days a week, he is set up for respite care so I can go on a 3 day trip (hopefully) with my daughter. He is on a few waiting lists for care facilities, and we are just keeping on keeping on.

His mobility issues are becoming critical. Mentally, he is just about all gone now; can't complete any kind of sentence, doesn't know who anyone is (but is aware when we are familiar and welcomes my presence), and is incontenent a lot of the time. His only real capabilities at this point are putting food into his own mouth and dressing/undressing and toileting.

Two days ago, I knew it was time to get him out of the house for a bit, so I took him to Walmart (kill two birds with one stone - we were out of milk and eggs), and it took literally 45 minutes to get out of the car and into the store. He has that "frozen to the spot" walking difficulty - take a couple of 2" shuffle steps and then *wham* he is literally frozen to the spot, knees shaking and incapable of movement. I tell him to stop, wait, and try again. Two more 2" shuffle steps, and *wham* frozen to the spot. Fortunately, they have wheelchairs in our Walmart. But I see now that every outing must be in the chair. He looked at me during the odyssey and said, "I didn't know..." and I said, "Know what, daddy?" and he said, "So bad. Me." It's heartbreaking.

So other than watching my beloved father sink further into the land of Dementia, nothing is different here. But I do think of you all all the time and wonder how your loved ones are doing. Catch me up, k?

...lil' deb

 
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Old 01-17-2009, 05:37 AM   #2
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Re: Status update!

Lil deb
So good to hear from you!! When I was reading your post I thought to myself lil deb just gave us a synopsis of a "day in her life" I couldn't help feel gee that sounds an awful lot like a day in my life. It is amazing how we all basically live the same type of day when caring for our loved ones.
It is so good that you have your dad in day care 2 days a week. We tried so hard to get mom to do that. She just fights us on it all the time. No I am not leaving my house. I like my house. So eventually we gave up on it. Plus, she was in the hospital so much and so long that we felt give her a chance to be home. Now we have enlisted the help of a Home Health Aide coming into the house through the VNA. The contract was just written up last week. When the VNA nurse explained to my Mom and myself Mom shook her head and agreed. Then when the nurse left she turned to me and said I am not going to do that. I said well, then you call the nurse back and tell her because the paperwork is being drawn up right now. So far it is still supposed to start I think next week someone will be coming. So we shall see how that works out. It is mostly for my Dad so he get a little break for an hour or so while this person is here. Typically, they need someone like me that does what I do on my days off from work, but that would be something we would have to pay out of pocket for.
I understand just what you mean about the walking too. Mom has fallen twice since she has come from the hospital a month ago. Her mobility and balance is so awful. I just have to keep reminding her USE YOUR WALKER!!
She cannot go out at all. Geting her from house to car is to much. The only out for her these days is trips to her Doctors apt's which we have had to cancel because of snowstorms. Way to danngerous to get her out in dry ground never mind snow and ice.
Keep up doing what you have been doing it sounds like it is going along for you. Enjoy the much deserved 3 day out with your daughter!

Love Pauline

 
Old 01-17-2009, 06:23 AM   #3
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Re: Status update!

I wonder sometimes if that stubborn insistence on taking care of themselves is in the long run a life-lengthening attribute. I have a 91 year old friend here who goes to a prayer group I attend. She ought to be walking with a cane, she ought to be staying home in icy weather, she ought not to be driving a car once a week (to church and back) BUT, she flatly refuses to stop doing anything she always did. She is in good mental health and a wonder to all of us younger people.

Maybe that stubborn streak keeps an elderly person going, prevents giving up?

Just a thought. Welcome back Skimps, I have missed you!

Love,
Martha

 
Old 01-17-2009, 07:32 AM   #4
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Re: Status update!

Big hugs to you little Deb. I have missed you, wondered how you were doing, prayed for you, and I am glad you took the time to catch us up on what is going on in your corner of the world. We have basically given up on taking Dad out except to necessary appointments. Not only is getting him into the car difficult at best, it totally exhaust him and confuses him. He seems to be just fine where he is. I understand that frozed in place. The other times he out walks his abilities and stumbles. We tried him on a walker and he is unsafe when he uses it because he can't remember to slow down.

I am glad you have him in day care and thrilled that you are going to be able to take a few days off with your daughter. It has been a long time since that happened. Hopefully you will find placement soon, for you and for him.

I do understand how busy life can get and sorry you are having computer problem. But it is so nice to hear from you and what is going on in your world. I do worry about you when you are not here

Love, Deb

 
Old 01-17-2009, 09:24 AM   #5
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Re: Status update!

Oh LilDeb. So glad you're back. If you have computer problems again! get to a library (haha) You scared the heck out of all of us. We may not be able to drive over and knock on the door to check that you're ok so you have to send carrier pigeon messages when your computer's not working.

Have someone else (your daughter) jump on and let us know that you're having difficulty and would be back soon.

take care and God Bless Yippe she's back! Oh, where you going on the trip with your daughter???

 
Old 01-17-2009, 09:36 AM   #6
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Re: Status update!

Good to see you post Deb! Your name has been mentioned several times because you weren't here!

Sounds like you've accepted what is happening...and that's the hardest part. Love your sentence..."and we are just keeping on keeping on"...

It's just so darned hard to convince them how much easier that wheel-chair is...I agree with Martha, there's a part of them that doesn't want to give in or give up.

Keep on being the daughter you were raised to be...he DOES still know there's somebody with him who loves him very much......Pam

 
Old 01-17-2009, 11:12 AM   #7
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Re: Status update!

So nice to be back, and to see that you are all still here! Well, actually, I wish you were all gone, and I was gone too because this horrible disease is eradicated from the face of the planet.

It's so tragic to watch this happen to my dad. I had my arm around him last night during dinner, and realized I could feel every bone in his shoulder. His weight is dropping little by little (a couple pounds a month), even though I feed him a lot (and his favorite things are sweet - ice cream, choc cake <got one cooling on the counter right now!>, pudding...), but his activity level is so low. Well, except when he's "spinning".

I went over last Wednesday at 8 in the morning, and he was sitting in a chair in the dining room. Not so unusual you might say. Well, it is when the dining room table is now in the front room, upside down with his socks hanging from the upended legs, the other 3 chairs are now in the bathroom, and he is sitting there in his underwear. That, my friends, is unusual.

So I said, "Howdy! What's goin' on?" To which he replied, "I don't know!" I said, "Looks like you are doin' some rearranging!" and he said, "I don't know!" So I restored the dining room, removed the socks from the table leg, and made pancakes and bacon for breakfast.

We all have a "New Normal", don't we? If I walked in on that at YOUR house, I would assume it was time to take you away. But in the land of Dementia, it's all perfectly part of the status quo.

Glad to hear from you all. I have missed you more than you know...

...lil' deb

 
Old 01-17-2009, 04:17 PM   #8
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Re: Status update!

Good to hear from you. DH is losing speech to the point that he sometimes says things like your Dad. Taking him out (we went to WalMart today...) is getting harder. He lags behind and we have to keep encouraging him or he would just stop walking. He doesn't talk at all in restaurants or with other people - just smiles blankly at everyone.

So far he's still continent but is having more trouble getting dressed (I just got him slip on shoes since he can't manage velcro anymore). DH needs to be monitored as to whether he's using soap and shampoo in the shower. Still losing weight too, although eating well (puts his own cereal in a bowel but would use water with his cereal instead of milk and eat it with a fork if not helped).

Hard to believe DH was diagnosed 7 years ago...and that this year he turns 65.

You've been very helpful through the years Deb. It's hard to believe that AD has been our lives for so long now.

 
Old 01-17-2009, 05:00 PM   #9
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Re: Status update!

You bring up some good points, Beginning, that I have wondered about. Maybe some of the veterans at this can answer.

As I have said, dad can barely walk. Two inch shuffle, glued to the floor, two inch shuffle, glued to the floor, knees shaking...he is bound to fall sooner rather than later. He doesn't speak to hardly anyone, but does try to talk to me and my DH. Sometimes, complete sentences. Most of the time - gibberish. Made up words, and real words. In nonsensical order, and inappropriate often. (You gotta find humor in this - Thanksgiving, 12 people around my dining room table, family and friends. Got dad sat down, napkin in lap, and he looked around the table and said, "**** and ***!" ) Can get cereal AND milk in a bowl, eat it and put the bowl in the sink - but can't remember to use soap to wash it out. Can dress self fully, takes nearly an hour, but often wears hat and coat in the house, and pajama pants outside. Memory is totally shot. No recognition of anyone; but knows who is familiar. Forgets daily he has a dog, and leaves the poor stupid fat thing outside for the longest time, till I go let her in. Does not remember name of dog. Will turn water on in sink, and forget he did so - and leave the room.

I guess my point is that he LOOKS old, frail and debilitated. But sometimes, I think he can THINK.

Deb, Ibake, Martha - do they still THINK? REASON? I would just LOVE to know...

...lil' deb

 
Old 01-17-2009, 07:10 PM   #10
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Re: Status update!

My mother seemed to have lost all memory and power to reason. And yet -- the last time I spoke to her before her death, on the phone, when I was telling her about the family members coming to visit me for Christmas ('07) she said as plain as day "I wish I could be there too." Until then we had many calls where I did all the talking and wasn't even sure if she was still there. Or she said completely irrational things. But every now and then something broke through.

The last time I saw her in person I had my daughter and son in law along. We talked for a while. Jenny did Mom's nails and put hand lotion on her hands, all the time she was looking at D without any recognition. Suddenly she called him by name and said "D, I almost forgot you!" That was the highlight of that visit.

So, yes. They are still inside there somewhere, confused by all the plaques and tangles in their brains, but still on an occasional lucid moment the real self flashes through. It is like a senior moment - we all get those as we grow older, but maybe once a week, once every 3 days ... with the AD patient their whole life is a senior moment except once a week, or once every few days, they have a lucid moment.

Enjoy those while you can!

Love,

Martha

 
Old 01-17-2009, 07:33 PM   #11
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Re: Status update!

Little Deb...
Thought for dead
Raised her head
Right off the bed
Hurray we called
Both loud and small
she came from past
she returned at last
we mourn no more
no tears on the floor
Lil Deb came home
No more to roam......

Yes, Litlle Deb...they do think. Two examples. Momma didn't know me for the last two years of her life except that I was the link to her"two boys" that were the light of her life. Remeber that I am-was-an only child. My mom and dad used to call my hubby "the Buoy" It's a family joke...but Mom was sitting at the dining table-this was about three months before she died. I had been helping her with lunch. I was wiping up the table-she turns around and says-out of the blue-"Where is my other kid, where is Buoy?" Tickled my hubby to no end. STill didn't know who I was, but had remembered Craig. When he came over and said, "I'm here, Honey(what my kids called my Mom). She looked at him, smiled and then went blank...

Then I had been talking to mom on the phone one time, about 5 month before she passed. it was the usual thing where I don't know that she really knew much of anything. But at the end of the conversation when I was telling her good bye she said"wait! she paused and then said so clearly..Remember that I will always love you." And it was my mother that I had always grown up telling me that. So yes, they still can think and occasionally it comes through. Sometimes the stars on the Planet AZ align with ours and the comets carry the lines of communications across the skies so we can hear the love from our beloved ones telling us they care. I knoe of no other explanation dear little deb.

try not to stray so far...we were beginning to think daddy's pile of rocks had fallen over on you and buried you. We missed you and poor dumb dog...

 
Old 01-17-2009, 07:52 PM   #12
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Re: Status update!

Lil' Deb...Your Dad sounds much like my Mom and FIL in the first couple years.

We were told early on that "they don't loose their intelligence"...and it took me a while to truly understand this. What you're seeing and hearing is exactly what this means.

Those garbled words make sense to THEM! I was always surprised when understandable words would come out too....and I found that if I simply repeated a word or two that was somewhat legible, Mom would think I understood exactly what she was talking about! The fact that I didn't sure made no difference...she'd get a satisfied look on her face.

Even in the last stages, our loved one may speak a few words together or even a single recognizable word! I've been surprised many times. My MIL (who was at the end of this journey, and passed away a year ago) looked directly at my husband about 12 hours before she passed and said in perfect words..."Are you coming to the funeral"? Such a stange thing she must have been worrying about...and she had not said anything for several months before that.

About 6 years into this disease with my own Mom, my daughter had come home to visit. She hadn't seen Grandma in 2 years, so that was our first place to go. When Mom heard her voice, she shuffled over to her and held her hand against my daughter's cheek...and started a conversation. We had "Grandma" back for over a half hour! Even the caretakers were shocked...and we considered it a little miracle! Mom hadn't even recognized any of her own children for over a year...and seldom said anything we could understand, yet something sure stirred in that little brain.

When you ask about "reasoning"...yes, they can still do this early-on. I found the best success I had was to "go to their world" and try to look at stuff like them. When I saw Mom water her little African violet that she'd had for years...(we had taken it to the A facility) with a teapot she'd insisted on taking also...I understood why she wanted it there with her!

Another time early-on I couldn't keep the tears back as I sat with Mom on the bed. She wiped a tear away and told me "I had a leak"...somehow, we both ended up laughing and laughing...

When they REALLY start to forget things...there's still a few things that stick around in their brain. I remember Mom wanting a banana...the caretaker peeled it and sat it on the table in front of her. She gave me a quizzical look, then looked back at the banana. She carefull picked it up and ate it like an ear of corn.........she recognized the SHAPE, but not what it was! Such an interesting thing the brain is!

Sure had to be a memorable Thanksgiving for you...Pam

Last edited by petal*pusher; 01-17-2009 at 07:58 PM.

 
Old 01-17-2009, 07:55 PM   #13
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Re: Status update!

Wow! Thanks, ibake, for the poem! You're a poet and don't know it!

And thanks for the insight, ibake and Martha. Makes perfect sense. It's funny you mention "the buoy" - I have a brother in California (yeah, the one that flys out every time I send him a four figure check but never calls or writes), and a DH and 3 kids here in Denver. Dad NEVER fails to ask if my "dad" is home. He means my DH. I will tell him that he's at work, and dad nods sagely, as if that's what he expects to hear. We all figure out what they mean, don't we? He can ask me, "Where?..." and I know he wants to know where DH, son and daughter all are.

As I was giving dad dinner, I thought of another couple of things: Dad has not been in the shower for over a year. Remember what he told me the last time? He said I was torturing him. So I sponge bathe him every 2 or 3 days. He has always been so meticulous, and now, will not shave (I do it now, every morning), forgets to brush teeth for days at a time if I don't set it all up for him at the dining room table and sit there while he brushes, cleans nails obsessively (I had to take all clippers. He cuts them so low they bleed), and picks at himself. Dry skin, a little buggy bite...all pickable till he bleeds.

As for the rocks, well, there has been a development there. The piles of rocks seem to be of no consequence any more. Now, he is into these HUGE slabs of granite or concrete he finds. I swear - I almost broke my neck the morning I tripped over this 12"x12"12" huge LUMP of concrete he had moved to the top of the stairs! Here I come, sausage, eggs and hotcakes in hand, round the corner and WHATTHEHELLISTHAT? I asked him how he moved that heavy thing, and where did he get it? Blank stare. I never did find out. Three days later, there is a chunk of beautiful quartz residing right by the front door, on the inside of the house. I didn't even ask. No point. But the rock collecting seems to be over. Stages, I guess.

And yes, the fat stupid dog has become my buddy. I have found out that she is not as stupid as I once thought. She is still fat, though. Dad marvels at this lovely animal, when he remembers that he has one. She can do no wrong in his eyes, even thought I want to throttle her with every box of $1.25 Kleenex she shreds. He leaves the boxes out, and she busts out a can of whoop-a** on every one of them. Whadda mess.

So good to hear from you ladies again. I wait for every post.

...lil' deb

 
Old 01-17-2009, 08:21 PM   #14
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Re: Status update!

OK lil deb I guess I've lost my mind for sure. I know I typed a long "Hello" to you as soon as I saw your post. I can't find the stupid thing. I guess I cancelled it or didn't hit submit reply or something????? I have no idea.

Anyway I'm very glad to see you here again. I've missed you and have been worried about you and your Dad and his big, fat, stupid dog. I know how busy you must be but I'm sure glad your here. I've missed your humor and your caring posts.

So sorry I'm late in saying my "Hello". I swear I typed it!!!!!!! Oh yeah, I'm losing it and I'm very tired.

I sure have missed you Lady.
Love Chris

 
Old 01-17-2009, 08:32 PM   #15
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Re: Status update!

I'm sorry but this just won't do. My three rescue dogs have put up a stink about you calling her a big stupid dog. They say that even big stupid dogs have a name.....so lil deb....what is dear daddy's dog's name?

 
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