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what we're dealing with now
Posted: Friday, April 6, 2012 10:05 AM
Joined: 4/6/2012
Posts: 67

After the 1st week of mom just being off the wall on absolutely everything things settled down some.  She was on pain meds every day but now it's just as needed which is just at night.  Nights are horrible!  Before this it was rarely but now it's every day that she asks where her mom, dad, grandpa are, when they're coming home, where her past pets are at, wanting to go home, which can be the home of her childhood, home she had before this one, even a home I"ve never heard about.  At night she dont' know who I am and/or thinks I'm her mom. 


She dont' do well when she sleeps in her bed.  She wants to go there but once there it's anywhere from just a few minutes to an hr and she's crying, says back hurts, neck hurts, stomach hurts.  Wants me to rub whatever but when I do she screams in pain and wants me to stop.  I stop, she crys for me to rub her, I rub, she wants me to stop. Why are you rubbing me? it hurts when you do that, cause you asked me to, I did not!!

 She wants her socks off, they're making her hurt,  she wants the depends off, they're making her hurt, she wants the brace off, it's making her hurt.  Set me up, lay me down, set me up, lay me down.  I try to comfort her but I usually don't care about me at all. 


Up till the past few days she slept great on the couch setting up, would only get up once or twice to use the commode.  But now she's starting to do the same thing on the couch.  I move my couch either next to the bed or the couch so it "traps" her in and she can't move without waking me up.  Cause even tho she can't walk 2 feet or even get off the couch/bed without help she of course still trys. 


We had PT for a while, we have 2 excercises to do to help with her balance.  We were doing them everyday couple times a day but then one day she said her foot hurt.  I rubbed it put some icy hot on it and her leg.  Now her leg starts hurting and it jerks and shakes and she says it hurts really bad.  It sort of looks like she's doing it  or maybe it's just cramps but I'm calling the Dr today to see if they can come out and check.  IF I can have the original one back since I haven't heard back from when I called and complained about the other idiot. 


Have a visiting nurse that comes once or twice a week too.  She has been a blessing!  She has helped me alot with the pain meds and trying to get mom regular.  She doesn't have a BM every day and she thought that might be the cause of some of the restlessness.  Mom's never been one to go everyday but with the pain meds guess she should.  Sensa which is a stool softener and laxative, prune juice heated up is better than cold.  Fiber added to food/drinks. And I still can't get her to go daily.  She'll go 3 or 4 days but then 3 or 4 days she don't.  She's drinking more now than before and I still give her fruits, jello, popsicles, etc.  She still eats really good even tho it's left handed and makes a mess.  One night she said try eating left handed and see how fun it is.  I did..not fun! lol 


She still wants to take her daily rides, she can barely make it to the car. I let her walk there just so she gets some sort of exercise.  The ride goes fine but now when we come home she says ..who lives here?  Our name is on the mailbox and she  asks...what "last name" lives here?  Once in the house she's still confused for a while but then gets better.  The sundowning thing has moved from around 5 or 6 pm to anywhere from midnight on.  When we had 2 weeks of really warm weather, I took mom outside with me, set her in a chair in the shade and let her watch me weed flower beds, etc.  She loved it!  started a list of what she thinks I need to do next. 


I have a sitter come in 3 days a week now and will be increasing that even more.   I'm so tired and need a break more often than before.And with this great weather I want to be outside.  I'm considing having a sitter at night even if it's just a couple of nights so I can go to my bed and get some real sleep.  The local alz assc calls me every week now, I've been talking to them for years. 


ok people I think I"m done, no more posts, at least for now. 

Great to be back!



Posted: Friday, April 6, 2012 10:18 AM
Joined: 12/15/2011
Posts: 3978

Does your mom have any swelling of her arm or hand now?  The reason I'm asking is because there is a pain syndrom called RSD which some people develop when they have a broken bone.  It needs to be treated by a pain doctor as it can spread all over the patients body.  I had RSD when I broke my elbow and some of the symptoms you are describing about your mom, might fit that.  The biggest indicator would be the swelling, though.
Posted: Sunday, April 8, 2012 10:28 PM
Joined: 4/6/2012
Posts: 67

Thank you for that info, I'll check with the Dr.  AlMost  all of the swelling has gone , but they said it will come and go, just a little at her wrist right now.
Posted: Monday, April 9, 2012 9:30 AM
Joined: 12/15/2011
Posts: 3978

Here's a link which explains the signs and symptoms of RSD.

Stephanie Z
Posted: Monday, April 9, 2012 9:54 AM
Joined: 12/15/2011
Posts: 4218

Hi cb55, Your profile is not filled in but I did find a past post saying mom broke her knuckles. I have some suggestions for you. Try giving mom pain meds about an hour before she goes to sleep. Sometimes people become agitated because they hurt and then when given the pain meds, they take a while to work and the agitation increases. When the pain meds do kick in, they don't work as well.


Check with her physician, but you should also be able to give her melatonin and you might ask him about something for restless leg syndrome as well. The melatonin should not be a problem because our own body makes it  but  we make less of it as we age and sleep can be a problem.


You mentioned that mom liked to be outside with you. I encourage you to do this whenever possible in the nice warm weather. Just watch for sunburn, put sunglasses on her and keep her in the shade. The reason is, her circadian rhythms are probably all mixed up. Being outside in the sun for a while helps re-establish the differences between day and night and the fresh air and activity of going outside will also help tire her out a bit.


You might also try putting a stuffed animal in bed with mom to see if it offers her any comfort. Sometimes this helps too.


Keep in touch and let us know how things are going



Posted: Thursday, April 12, 2012 4:52 AM
Joined: 4/6/2012
Posts: 67

Thanks all.  I asked the Dr about RSD, it's not called that anymore but he knew what I was talking about and no she doesn't have it.  Suggested if this doesn't go away to take her to a pain clinic.  They have much better meds for dealing with any and all sorts of pain. 


I took her to the chiropractor and she hasn't had any of the leg hurting/jerking since. 


Everything got so bad Monday I took her to the ER and they found nothing wrong with her.  I know something has to be going on with her to be acting like this but what it is, I doubt we'll ever find out. 

Posted: Thursday, April 12, 2012 5:03 AM
Joined: 12/21/2011
Posts: 2431

is she taking tylenol regularly?  or something to help with the pain, non-narcotic?


my mom was not feeling well Sunday or Saturday, I got them to give her Tylenol - all of a sudden, she was sleeping beautifully...


so the doc prescribed it every 6 hours, i think...


esp since she's in bed, it can make you have tenderness you might never imagine...


do any of the topical pain gels help?  (not the icy cold ones, i imagine)