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 sleeping 14 hours a day 
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post sleeping 14 hours a day
Del saw his neurologist yesterday. They were concerned that he had something else going on as he is now sleeping about 14 hours a day. His halluciations, which had been gone, have returned. 4 months ago he scored 21 on the mini mental status test. Yesterday he scored 10. They did a bladder scan thinking that with his history of prostate cancer and his current rapidly accelerating PSA levels that there was something going on there. They also took blood and did a urinalysis.

He was going to put him on Namenda this visit but decided not to given the fact that he seems to have some other concommitant illness going on. We will see him again in 3 months.

I have been thinking that Del is just shutting down. I don't know how much more of this he can take. Diabetes, Hypertension, Essential tremor, Colon cancer, Parkinson's, a stroke, Prostate cancer, skin cancer twice, Lewy. Too much for one person to deal with.

Anyone else out there who has had experience with all of this going on? I could use some suggestions.

Meanwhile, I am having recurrent bouts with ulcerated corneas....four times in the last year. They get me in the same day I start experiencing it as they consider it an Opthalmic emergency. It is apparently related to my Psoriasis which I only have as a small patch on one elbow.....but with the ulerated corneas which are related to an auto immune disorder (Psoriasis) they want me to see a rhumatologist and get on some kind of oral medication. Anyone have any experience there? I am off to the walk in clinic as my right eye has ulcedrations dx a week ago and today my left eye is starting.....

Auto immune....stress....related???

Nan (67. Caring for husband Del PDD, 74)


Sat Dec 11, 2010 4:34 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: sleeping 14 hours a day
Nan, I'm so sorry things are going badly for you and Del. Right now they are for us, too. You will be in my thoughts and prayers this coming week. God bless you!
PS: I have psoriasis, too, which comes and goes. Haven't had a chance to see a specialist yet. Mine occurs mostly on my feet but sometimes on my hands. I've also had small patches on my knee and one elbow. I'm convinced stress plays a big role. It is, I believe, an autoimmune disorder.
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Pat [65] married to Derek [81] for 34 years; husband dx PDD/LBD 2005, probably
began 2002-2003; Stage 4. I am his caregiver at home.
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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.


Sat Dec 11, 2010 4:44 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Pat -
I'm really concerned about you, Pat. I think I know something of the struggle you are having... It's been all too much! (One indication is that you added your 'spouse signature' to this last posting .... which is a duplicate of what is already 'attached'. That isn't typical of you.)

Please know that you will also be in my thoughts.... as usual. I'm sorry to know about the physical problems that are obviously adding to your cares. (I'm also dealing with stress induced physical problems.)

Dale is wandering tonight and he keeps coming back to tell me about the 'women' he sees and what he has told them. A house full of women. What a life!

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


Sat Dec 11, 2010 7:59 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: sleeping 14 hours a day
My main physical problem I have right now is back strain. It gets worse each day because I'm still having to transfer him and sometimes he can't help and sometimes he won't cooperate. I'm trying to get him in for a week or so of respite care but I think everyone is reluctant to take him. I'm still hopeful, although I may have to take him 35 miles away. My back just needs a little time to heal.

_________________
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.


Sat Dec 11, 2010 9:16 pm
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Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post Re: sleeping 14 hours a day
"My back just needs a little time to heal." .... and so do you, my friend! (Maybe you also need ear-plugs! I don't think I could take what is dished out to you.)

Sending you (((((hugs)))))).....

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


Sat Dec 11, 2010 9:41 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: sleeping 14 hours a day
Nan - my thoughts are with you. My dad had multiple things going on too, some of which remained undiagnosed because he didn't want any more testing done. He said "what's the point? No more tests, no more hospitals, no more doctors." We agreed and honored his request. We just tried to keep him as comfortable in every way in his remaining time.

Pat - if you don't take care of you, who is going to take care of Derek AND you? Sorry to sound so bossy, but you really need a respite, girl! It sounds like things are at the point where you need to make a big change, and I know that isn't easy. But you can't wear yourself out, get injured or sick for anyone's sake.

I hope everyone out there has an uneventful day, sometimes the best that we can hope for. 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.


Sun Dec 12, 2010 11:54 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: sleeping 14 hours a day
Nan,

I hope that they are able to figure out what acute problem your husband currently has that would account for such an MMSE score drop.

Sleeping 14 hours a day is not so concerning to me, given that your husband is fighting Lewy plus so many other things.

Is Del overweight? We have one family member who has had some of what Del has had -- metabolic syndrome, kidney cancer, sleep apnea, asthma, and lots of heart problems. I asked him recently if he was thinking of calling it quits. He said no, he wants to live for the grandchildren. I do think that the spouse caregiver would like to call it quits. You might ask Del if he's wanting to call it quits. (Is communication possible?) If possible, this would be a good time to review end-of-life treatment wishes.

Sounds like your seeing a rheumatologist is a good idea. Can you get regular exercise? For me, it took over a year after my father's death to recover my health. Not only can stress make you stupid, but it can really do a number on your physical and mental health.

Robin


Sun Dec 12, 2010 2:23 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: sleeping 14 hours a day
Pat,
I do hope today is a bit better for your back and that you are still working on getting some sort of respite!

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Irene Selak


Sun Dec 12, 2010 8:33 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: sleeping 14 hours a day
Nan,
That is a big drop in his score of the MMSE testing , I also hope they can get to the bottom of the reasons for this and I do hope you are able to get some medical help for yourself, seems to be a lot going on in your house!

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Irene Selak


Sun Dec 12, 2010 8:36 pm
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Location: Vermont
Post Re: sleeping 14 hours a day
Nan- I hope your eyes clear up asap. Take care of yourself. 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.


Sun Dec 12, 2010 9:24 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: sleeping 14 hours a day (Robin)
Del is at a normal weight. He used to have sleep apnea when he was overweight...like 218 pounds. Now he's 155 pounds and there is no snoring or hesitations in breathing at night. He hasn't used the machine since he lost the weight and he would only sleep 8 or so hours. Now he's sleeping 12-13 at a stretch with a nap in the morning and one in the afternoon, making his awake hours down to about 9. I thought that was a sign that the body was starting to shut down. Am I wrong?

There are a lot of things that can be going on. We should get the results back tomorrow from the testing for the UTI and also all the bloodwork they did. If I don't hear from them it will be because they haven't found anything. I have found with the VA, that if there is a problem you get a call right away...if everything is okay you might wait a couple of days to hear.

I have discussed his rapidly accelerating PSA level with his Radiation Oncologist. He did not do well last time on the hormone shot that they give them...In fact he has told the doc that he would not accept another injection. I think his words were, "I would rather die." He may feel differently if faced by imminent death, however.

These are tough calls....we know the outcome will be the same...it is just a matter of choosing which options can give a better quality of life rather than a long life.

And, It might just be the progression of Lewy. Who knows. Smiles, Nan


Sun Dec 12, 2010 11:25 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: sleeping 14 hours a day
Thanks, Lynn and Irene. I went to the walk in clinic and got seen by a female physician who said she was delving more and more into holistic things and suggested some things that have been successful for her son who had a very severe case of psoriasis. (My ulcerated corneas are related to my psoriasis auto-immune wise.) She gave him a product called Olivenal and he has been clear for several years. I ordered some. She also told me that whey protein is good for this. I am going to try it all.....can't hurt...might help. Have the olivenol on order. Smiles, Nan


Sun Dec 12, 2010 11:32 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: sleeping 14 hours a day
Nan- I hope the dr.'s suggestions work well for you, and soon! As far as the sleeping goes, my un-medical observation is that people do tend to sleep more and more as the end gets near, but I also think that there could be other reasons. Low blood pressure, depression, perhaps infection?, not getting good quality sleep at night, medications, could be reasons for more sleep. Did the dr. tell you anything helpful about the 14 hr. sleeping? 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.


Sun Dec 12, 2010 11:49 pm
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Joined: Sat Jul 31, 2010 5:28 pm
Posts: 317
Post Re: sleeping 14 hours a day
Lynn, that's when they went into overdrive and did a bladder scan to see if he was retaining urine which might mean a blockage, related to the Prostate cancer returning. Then they took urine and blood to test for other things. Don't know what all. First he wasn't sleeping then he was sleeping too much. Same medication levels as before....just more sleeping now. Also more delusions and more hallucinations which are also hallmarks of infection going on....or maybe just Lewy rearing his ugly head again. Am anxious to see what the tests show. Smiles, Nan


Mon Dec 13, 2010 12:13 am
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Joined: Sun Aug 26, 2007 9:44 pm
Posts: 118
Location: Nashville, Tn
Post Re: sleeping 14 hours a day
TO EVERYONE FROM CHERYL. my husband is young (59)... has all these crazy LEWY symptoms but from what I can tell from all the posts WE NEED TO TAKE CARE OF OURSELVES... I KNOW I HAVE NEGLECTED MY SYMPTOMS (WE HAVE LEWY BODY TOO, IN A WAY).... If something happens to us.... everyone else in the family is s.c.r.e.w.e.d..... and I don't want to leave my kids with this problem!!!!!!! Symptoms of Lewy are so diverse and so constantly changing.... it is completely impossible to tell what causes what. I am constantly worrying if he has a UTI or whatever..... there are test strips you can get at the drug store that are suppose to tell you if he has UTI (found this out form someone on this forum) it really doesn't matter.... it is lewy taking hold.... as long s we know we can't fix it.... it is in god's hands..... we are just trying our best to fight off the symptoms.... I sometimes wonder, are we doing them a favor by taking such good care.... getting infections taken care of as soon as possible... worrying about every little thing>>>>> But for myself that's all I can do.... If I intentionally neglected anything, I would never be able to live with it...... BUT THESE SYMPTOMS ARE NOT CONTROLLABLE FOR VERY LONG... BY US... BY THE MEDS.... It is just how long do we want it to go on? Interesting questions.... but not so able to separate from the reality of the situation when we are the person's taking care of someone important to us.... fondly, Cheryl B.


Mon Dec 13, 2010 1:31 am
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