View unanswered posts | View active topics It is currently Fri Sep 19, 2014 11:58 am



Reply to topic  [ 89 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6  Next
 End stages? 
Author Message

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: End stages?
jweeks,
If memory serves me well I believe dealing with these tiny steps in our own situation the command that the PT used for him was "Heel to Toe" , if we did say that he was able to do it and we often had to repeat it several times even on a small walk of just a few feet !

_________________
Irene Selak


Sun Jan 16, 2011 1:25 pm
Profile WWW

Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: End stages?
Thank you for responding to my comments regarding Wayne. He has fallen twice today and can start to fall so quickly - both times my home health aide was holding on to him and let him down "gracefully". He will get up out of a chair too when no one is looking his way and there he is walking around. We have a wheelchair in our bedroom and he was confined to that room most of the time but he has wanted to come down stairs and be with the family lately and we help him down with a gait belt.

I will try the "heel toe" commands to see if it helps his gait. Irene. Lynn when you say your dad was conversing at the end, I am amazed....Wayne,doesn't say anything that makes sense. I think that is the hardest part for me - not to be able to communicate. I long for just one hour of time to talk like we usta do. I heard a good quote today:"Speech is civilization itself. The word, even the most contradictory word, preserves contact - it is silence which isolated." by Thomas Mann

It is a devesatating disease anyway you look at it. Another quote says: "We may not be able to control events in our lives but we can control our attitude toward them"....so with God's help I caregive almost 24/7. May you all get a good nights sleep. Jeanie


Mon Jan 17, 2011 11:25 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: End stages?
Jeanie,
If someone cannot be with your husband 7x24, then perhaps you can consider getting a bed alarm and a chair alarm so that you or the aide is alerted when he gets up.
Robin


Tue Jan 18, 2011 12:18 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: End stages?
Robin, it's kind of funny--in a warped way--that at my husband's SNF there are so many residents with alarms on their wheelchairs and beds that often the staff can't tell who is going off at any given time. Sometimes it sounds like a wild, shrieking chorus in there. :lol:

_________________
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.


Tue Jan 18, 2011 12:46 am
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3362
Location: Vermont
Post Re: End stages?
I was with my dad 4 days before he died, and sometimes during that week his speech was clear enough to understand, most of the time it was a real struggle to even figure out one word in a sentence. But his CGs said he was conversing with them less than a minute before he died. There are so many surprises, aren't there? 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.


Tue Jan 18, 2011 2:31 pm
Profile

Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: End stages?
Yep, I have an alarm and a baby monitor that I use when he is sleeping..He is never left alone - someone is always responsibile for him.

What a hoot....the alarms in the nursing home.

The hospice nurse comes tomorrow and I am going to ask him if he thinks W. is in the end stages.


Tue Jan 18, 2011 9:20 pm
Profile

Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: End stages?
The hospice nurse was here today and Wayne had a seizure....he has never had one of these before. It really scared me and I was glad the nurse was here. I really thought he might be dying. He became very ridged, shaking and his teeth were clamped. He stiffened straight out and would have fallen out of the wheel chair if the nurse didn't put his leg between Wayne's leg. He was also unresponsive. We finally got him into bed and he went to sleep for 2 hours and woke up back to his Lewy self. Has this type of thing ever happened to anyone else out there?


Wed Jan 19, 2011 11:15 pm
Profile

Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: End stages?
This happened to us, too. Shortly after we brought my mother-in-law to live with us, she had a seizure similar to what you described. She laid down for a nap and had the seizure while in bed, luckily for us. Happened out of the blue. Her neuro said that about 20% of Lewy patients suffers from seizures. We sure got lucky. The seizures are being controlled with medication and we have not had an incident in over a year. Good luck.

_________________
Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Thu Jan 20, 2011 10:33 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: End stages?
Yes seizures are common in some LBD'ers !

_________________
Irene Selak


Thu Jan 20, 2011 4:32 pm
Profile WWW

Joined: Tue Feb 23, 2010 10:32 am
Posts: 215
Location: Kalispell, MT
Post Re: End stages?
What should we do if a seizure occurs? The most valuable part of this forum to me is knowing about things before they happen. Like the Capgras thing--I had never heard of it and would have been totally freaked out. Because of this forum, it was almost a non-issue, and something I certainly don't take personally.


Fri Jan 21, 2011 5:52 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: End stages?
When a person has a seizure, just try and make sure there is nothing they can hurt themselves with them thrashing about and it is helpful if you can to try and turn the person slightly on their side, saliva tends to build in their mouths.

My daughter is an epileptic and I have been through this many times with her !!

_________________
Irene Selak


Fri Jan 21, 2011 5:57 pm
Profile WWW

Joined: Wed Sep 30, 2009 8:25 am
Posts: 227
Post Re: End stages?
Seizures seem scary, but the main threat is the person hurting themselves while thrashing. The right meds should help to alleviate the violent seizures. See your neurologist. Main thing is don't panic. You could always call the paramedics to take your LO to the hospital. They might admit the patient to get the meds right. That's what happened to us.

_________________
Donna (age 56) caregiver for mother-in-law Margaret (age 88).


Fri Jan 21, 2011 6:33 pm
Profile

Joined: Fri Jun 05, 2009 4:15 pm
Posts: 82
Location: Onsted MI
Post Re: End stages?
Thank you all for your help regarding the seizures. He hasn't had another one (yet). Actually he's having a good week, hasn't fallen or been aggitated so I'm happy.


Thu Jan 27, 2011 11:15 pm
Profile

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3362
Location: Vermont
Post Re: End stages?
So glad you are having a good week. You'll need LOTS of those and really appreciate them when they happen. 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.


Thu Jan 27, 2011 11:58 pm
Profile

Joined: Wed Oct 28, 2009 11:53 am
Posts: 969
Location: Ocala, FL
Post End stages?
LTCVT wrote:
..a hospital bed with special mattress that inflates and deflates to prevent pressure sores.... not able to be lifted into a chair or wheelchair, and is in bed 24/7. He still does love to have visitors.

For the most part he hates being touched now. ... I can only hold his hand for a few seconds to a minute or two. He seems to be in pain when people touch him at all. He doesn't want music on, and even wanted the tv off today, which was totally not like him.
I just re-read all you wrote, Lynn, and Dale is right there now. Everything you wrote is so very familiar.

He had guests yesterday and after they left, he cried. I think he knew it might be their last time together. He has now been sleeping since about 7 pm last night. I talk with him but he does not want any food. I've been holding his hand. When I touch other parts of his body, he winces.

A nurse will be here this afternoon to evaluate him for hospice.

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


Fri Mar 04, 2011 1:33 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 89 posts ]  Go to page Previous  1, 2, 3, 4, 5, 6  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr