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 Sudden decline over five weeks 
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Sudden decline over five weeks
I am posting this as a separate thread because Dale's five week 'decline' has continued and I think the suddenness of it is worth noting. From what I've read, others are experiencing similar - somewhat abrupt - changes and may want to contribute.

The newest development is daytime urinary incontinence. Dale has worn a condom catheter during the night for over a year. No urinary protection has been needed during the day. However, for two days now, he has needed to wear a disposable brief. The times we've omitted it, he has wet the bed. He says he leaks.

The first warning of this downturn was increased delusions and hallucinations which began five weeks ago. For two weeks, he has had obsession with toilet functions and toilet paper. (Yesterday, he wanted a sample sent to 'headquarters.') He has a fear of constipation even though he has been quite regular. He complains constantly of pain in his back and in his legs.

He has frequent periods of 'freezing' and, following the advice of some on the forum, I've found that counting gets him moving again. In fact, he often counts to himself to get his feet going.

His blood pressure readings vary widely. He is unpredictably hot and cold. He wants his clothing off and on and off and on. His attention span is brief so entertaining him is impossible. TV programs must be carefully monitored because he takes the story line and makes it personal. He can no longer write his name.

Dale has brief swallowing issues and often will not finish eating something because he gets tired chewing - or perhaps bored with the food.

His awareness of his surroundings comes and goes. He told me this afternoon that he was tired of belonging to this organization.

He has always been kind and appreciative of anything I do. I'm grateful. He doesn't always know who I am but even so, he wanted to marry me yesterday. That's not all bad.


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 27, 2010 7:20 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Sudden decline over five weeks
These symptoms don't sound like they are any different from the "normal" decline we see in many neurodegenerative diseases.

I think the saying is true: just when you get used to one set of symptoms, another set of symptoms appears.


Mon Dec 27, 2010 7:38 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Sudden decline over five weeks
As Leone knows, Derek has undergone a similar steep decline of late, both physically and cognitively. We were wondering if it's the season of the year partly responsible or just what might account for it. Whatever it is, it's not fun! :cry:

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Dec 27, 2010 7:45 pm
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Joined: Thu Dec 02, 2010 1:44 am
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Post Re: Sudden decline over five weeks
Leone, you could have been writing about Fran instead of Dale except for the urinary incontinence. Fran is on Proscar, and I am wondering if this might be helping him. He has been on this med for a long time. Although I will not be surprised if it starts being a problem for him. He is still on a decline. Only time will tell.


Mon Dec 27, 2010 7:59 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Sudden decline over five weeks
Robin - These symptoms may be 'normal' - but the suddenness of the decline has taken me by surprise. Perhaps I have been misled.

A couple of months ago, we were planning a trip to California at the end of January. Dale was no where near immobile and continually delusional then. My point in writing is that these changes all took place in only five weeks.

No one told me that was 'normal.' On the contrary, some have indicated a heart attack, an operation, a bad fall with perhaps a broken hip, or some other medical condition such as pneumonia caused the downturn they saw.

We have no evidence of anything like that. I can point to nothing that caused Dale's sudden decline.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 27, 2010 8:59 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Sudden decline over five weeks
It was the normal for my dad. There was the HUGE decline, and then other very noticeable declines that happened for seemingly no reason also over 18 months. Sometimes the declines were so great you could notice the changes overnight. That became the new normal for us. And, none of the medical folks ever told us to expect it either. I think they were clueless about what he had and what was going to happen. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 9:23 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Sudden decline over five weeks
Thanks for your kind response, Lynn. This is especially traumatic for a spouse, I think. I'm quite suddenly treating him like a child - out of necessity. I sing to him to get him to carry out the simplest of tasks. ("Here we go a toileting....") He seems unable to concentrate on even the most basic of instructions. He has completely forgotten where to go in our house and asks if we can sleep in our own bed.

Oddly, he is more willing now to be led than even a week ago. Then, he wanted to have his own way and make his own decisions much like the 'terrible twos.' He now seems resigned. There is no argument left.

Again, Lynn, I appreciate your compassionate input. This is tough!


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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 27, 2010 9:39 pm
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Location: Vermont
Post Re: Sudden decline over five weeks
I wish I could say something more positive like "this too will pass and things will get better." I've always felt like I could handle things better with more data and had absolutely no information for about the first 3 or 4 months after my dad's big decline. Finding this forum was really helpful to me - there were so many experienced people here who provided so much info. and from there I knew what questions to ask and where to find more resources. I was completely grasping in the dark, by myself, at first. The hospital folks were clueless about what was wrong, the rehab center treated my dad like a pile of body parts without looking at the big picture of what was wrong with him and months later when we finally were able to get a neuro appt. we started getting a little info. By then I at least knew what to ask about. I feel so badly for all of you going through this. Our journey is over, but some of you have been doing this for years, and all I can say is, you are doing a great job for which you get little thanks or positive feedback. You are wonderful to do what you do whether your LO is living with you 24/7 or in a facility. It is a very difficult and draining road. You're doing a wonderful job. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 9:54 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Sudden decline over five weeks
And, BTW, I'm not sure which is more difficult - being a spouse and having to treat your spouse as though they are a child, or being the child and having to treat your parent like a child. They are both hard roles to switch into. I had a hard time with doing that last year. It made me feel really awful when my dad started asking me for "permission" to do things. He had always been extremely independent and that threw me for a loop when it first happened. I suddenly had to take over all decisions for him, a role I'd never been in. It must be really difficult as a spouse too. We're just not prepared for it. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 10:04 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Sudden decline over five weeks
I think any decline seems sudden.


Mon Dec 27, 2010 10:08 pm
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Post Re: Sudden decline over five weeks
Prior to last July, my dad's decline was on a much less steep trajectory. I had noticed him slowly declining for about 18 months prior. After the initial big drop in his abilities, his declines seemed to be much worse and more rapid that they had been 2 & 3 years ago. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Dec 27, 2010 10:15 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Sudden decline over five weeks
Yes, Lynn.... Dale's path in this disease has seemed blessedly slow ... and that's probably why I was lulled into thinking we could go on forever like that. In fact, even Pat thought Dale was probably a year behind Derek.

If 'all declines are sudden,' then we'll have to find another name for what been happening to Dale very gradually since 2009...... :roll:

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 27, 2010 11:01 pm
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Post Re: Sudden decline over five weeks
Most of Derek's declines have come in fits and starts rather than gradually. Some I attributed to illnesses but it does seem that the 'biggies' came in early winter of 2008 and early winter 2010. He was walking a bit up until a couple of weeks ago and now cannot even stand or assist in a transfer.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Dec 27, 2010 11:16 pm
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Joined: Wed Oct 28, 2009 11:53 am
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Location: Ocala, FL
Post Re: Sudden decline over five weeks
Dale is frustratingly irregular. Whenever I want him stand, he can't do it. We wait forever until he can get his legs to support him.

On the other hand, when he wants to stand and walk around, he just does it - often without the walker. It makes no sense. In fact, it is very dangerous because without the walker, he could easily fall. He is quite oblivious to the danger.

It reminds me of a baby who is beginning to take the first steps without hanging on to something. They are usually unaware that they have done it.

Dale wanders totally unaware..... and I'm the one who has a fit when I see him.

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Leone Carroll (75); wife of Dale (75) who passed away March 23, 2011


Mon Dec 27, 2010 11:45 pm
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Joined: Thu Dec 02, 2010 1:44 am
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Post Re: Sudden decline over five weeks
Leone, Fran does the same thing. I have to help him sit down , get up, and help him walk around the house. His wandering around the house are over. But, somehow he managed all by himself when I was out cleaning the driveway. There is was outside trying to give me directions, of course I could not understand a word he was saying. So as soon as I started towards him, wouldn't you know it he falls backwards over the railing. How in the heck did he manage to get up from the chair and come outside I'll never know. This disease never ceases to amaze me.


Mon Dec 27, 2010 11:55 pm
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