Please help- Need advice

Pumakitty

Hello everyone,

I am sorry to bother you again but I really need some help and advice.  I am sure you have read my post since the holidays about my dad and his decline.  He started back in treatment for his third reoccurance two weeks ago, but things continue to be up and down with him.

Since New Years he has had a major mental decline when he is at home.  He is very forgetful, wonders around at night, hears things, and treats mom and I terrible.  He will not get out of bed for any length of time.  When the change first happened we thought it was because of bad pain patches but this is continuing. 

When we go to the oncologist he tells him he feels fine, talks fine and normal.  I talk the the doctors and tell them what is going on and they tell me he is better with each visist and he does act that way during treatment and checkups.  As soon as I get him home it is a different story.

I work at night and mom is home by herself with him.  I am an only child and mom's family will not do anything.  Do any of you have suggests about what we can do.  I can not quit my job because I am the source of money for the three of us.  When I talk the the dr the can not understand what I am describing because he does not act anything like that.

 

Please offer me some advice.  I can not take much more.   Please, Please give me some advice.

 

Kathy

 

 

phrannie51

Boy, this is tough....

but it does make me wonder if when he's at the Dr.'s if he's not putting a ton of energy into being congnizant and "with it"....while at home he doesn't have to, and can let himself relax.  My experience just in life has taught me when one thing isn't the problem, there's usually more than one thing going on.  Like he may be having some dementia, but it is being exaberated by the pain meds....Of course, my expertise is minimal ....I do know that people with dementia have a harder time as the day goes by....they are the sharpest in the early part of the day.

p

HobbsDoggy

Did You Tell the Doctors?

Had this problem with my Mom not cancer related, but age related.  Doctors are in a bad position here as their paitent is the one the "have" to listen to.  Still we told the doctors that my Mom was losing it and what she did.  We did this in private and the doctors evenutally got to whre they asked my Mom the right questions and figured it out. 

Best of luck.

Tim6003

HobbsDoggy said:

Did You Tell the Doctors?

Had this problem with my Mom not cancer related, but age related.  Doctors are in a bad position here as their paitent is the one the "have" to listen to.  Still we told the doctors that my Mom was losing it and what she did.  We did this in private and the doctors evenutally got to whre they asked my Mom the right questions and figured it out. 

Best of luck.

Gosh Puma ...don't know if this helps or not ..

But if I recall your dad is into his mid 70's or older, right?  My mom is 73 and is begining to get like you describe your dad.  It's really hard bc I am 2,000 miles away and come to my conclusions by moms erratic behavior on the phone and then her friends tell me the same with them.

I contacted social servivces and they said a doctor could order (for a very limited time) home health nurse visits once a week if a doctor felt it needed. I explained that mom would never go for this and they advised I tell the doctor what was going on (much like you did your docs) and ask for the visits to be unbiased but confidential.  Now what that means is the visiting nurse would be the judge of the behavior, but would not tell mom the real reason for the visit, but the visit would be to ensure she did not have any questions related to her meds, last visit to the doctor and a previous procedure where they had to stretch her esophagus (choking issues) ....

My mom lives in Florida and is old enough to qualify for this under medicare, but she also has tri-care for life (dad was in the Navy for 24 years)  Dad died in 2011 of Leukemia and mom lives alone.

So I hope you can revisit the doctors and ask for this service, sometimes this has to be presented to a patient advocate at the treatment facility, they know more than often what steps to take to get this service for your dad if it is available.

I sure hope this helps, and I am sorry for what you are going through.

Best,

Tim

alligatorpointer

Sundowners?

A syndrome often referred to as 'Sundowners' may be what you are dealing with.  When I worked night shift at hospitals, occasionally there would be elderly patients who had been perfectly rational during the day but regularly start behaving in bizarre ways late at night.  It was a challenge to keep them from disturbing the other patients who were trying to sleep since the bizarre behavior often included yelling things like "Help! Police!" and talking loudly to imaginary room-mates.  Take a look at the following link:

http://www.wisegeek.org/what-is-sundowners-syndrome.htm

katenorwood

alligatorpointer said:

Sundowners?

A syndrome often referred to as 'Sundowners' may be what you are dealing with.  When I worked night shift at hospitals, occasionally there would be elderly patients who had been perfectly rational during the day but regularly start behaving in bizarre ways late at night.  It was a challenge to keep them from disturbing the other patients who were trying to sleep since the bizarre behavior often included yelling things like "Help! Police!" and talking loudly to imaginary room-mates.  Take a look at the following link:

http://www.wisegeek.org/what-is-sundowners-syndrome.htm

Agreed to a point

Kathy,

I too experienced this with my Mom, but towards the end of her fight.  She was 75, and for most of her life took an asprin for pain period.  The confusion of what was happening to her once strong body coupled with the extreme pain, that these STRONG meds wouldn't touch, and trying to grasp any and all hope was too damn much.  Kathy, don't be afraid to reach out to respite care, your family deserves it !  And please don't take anything your Dad does personally, and help your Mom to understand it's this dang dx not him.  I'm so sorry you are having to go through this.  Try to take a breath, and know you are a wonderful daughter.  This is not ever an easy walk, and some day's I know I felt like I just wanted to run away screaming !  I pray these doctors do right by your Father and things turn a corner for you all.  I will be thinking only good things for you all.    Katie

Pumakitty

Thank you

Thank you so much for your thoughts.  I have been reading about sundowning and it does sound possible.  He sleep all night and then was really confused when he got up this morning.   I am waiting for a call from the nurse at the chemo office. 

Your words of encourgement helped so much.  When I get really angry at him and want to get as far away as possible I do not feel like a very good daughter. 

We tried having our neighbor stay with him, but that made him very very angry and then he acted worse. 

Also,  we can not get him to change his clothes or take a bath.  He sleeps in his jeans and coat every night.  I feel bad, but I can not make him do these things. 

Thanks again for listening to me complain.

Much love and prayers to all of you.

 

Kathy

 

 

phrannie51

Pumakitty said:

Thank you

Thank you so much for your thoughts.  I have been reading about sundowning and it does sound possible.  He sleep all night and then was really confused when he got up this morning.   I am waiting for a call from the nurse at the chemo office. 

Your words of encourgement helped so much.  When I get really angry at him and want to get as far away as possible I do not feel like a very good daughter. 

We tried having our neighbor stay with him, but that made him very very angry and then he acted worse. 

Also,  we can not get him to change his clothes or take a bath.  He sleeps in his jeans and coat every night.  I feel bad, but I can not make him do these things. 

Thanks again for listening to me complain.

Much love and prayers to all of you.

 

Kathy

 

 

You know, Kathy....

tho your dad's behavior is getting stranger by the day.....what I find VERY strange is that the Dr.'s aren't picking up on things like him not wanting to bathe or get out of his clothes to sleep....right down to wearing his coat......don't they see that as a bit different??  Especially since this is new behavior? They can hardly pass that off onto the pain meds.

p 

Pumakitty

phrannie51 said:

You know, Kathy....

tho your dad's behavior is getting stranger by the day.....what I find VERY strange is that the Dr.'s aren't picking up on things like him not wanting to bathe or get out of his clothes to sleep....right down to wearing his coat......don't they see that as a bit different??  Especially since this is new behavior? They can hardly pass that off onto the pain meds.

p 

I agree

I just told the nurse about the clothes issue today, since this is new.  Dad claims it is because he is cold.  I am still waiting to here from the doctor or nurse.  He goes in for bloodwork tomorrow morning, so we may just talk then.  Talked to mom a few minutes ago and he is acting pretty normal tonight.  You just never know from on minute to the next.  Which is what makes it even stranger. 

I think the problem is the extreme difference in his behavior at the doctor and treatment and at home.

 

Kathy

 

donfoo

Pumakitty said:

I agree

I just told the nurse about the clothes issue today, since this is new.  Dad claims it is because he is cold.  I am still waiting to here from the doctor or nurse.  He goes in for bloodwork tomorrow morning, so we may just talk then.  Talked to mom a few minutes ago and he is acting pretty normal tonight.  You just never know from on minute to the next.  Which is what makes it even stranger. 

I think the problem is the extreme difference in his behavior at the doctor and treatment and at home.

 

Kathy

 

short videos

do you have a camera in your phone? Maybe a few short video clips might show the doctors a couple examples of what you are describing? Even audio would be helpful.