Hello all. I just found you on the internet and hope you can give me some advice. My 50 year old daughter had been living with me for several years . The last five years she took respirdol and amantadine and we got along fairly well. Since Dec 2012 she has been hospitalized 3 times followed by rehab. Each time she had been refusing to take her meds (resperdol and amantadine). The last time the doctors recommended long term care. She is in a nursing home now and extremely unhappy and showing this by anger at everyone she comes in contact with (staff, therapists, room mate.) She refuses to talk to me and doesn't want her dog to visit even though she normally loves him).
The only good thing is she now takes her meds. My question to you all is: Where does this extreme anger come from? Could it be she wants to come home? I would like to bring her home but what do I do when she again refuses to take her meds. I am unable to care for her when she does this.. Has anyone ever made a deal with a nursing home to reserve a bed for later on? Thanks in advance for any responses. Willie

Willie,
Anger is often a stage in the disease and makes it very difficult to care for the Phd. Chances are she will not stop being angry if you bring her home. Anger will probably continue when you bring her home compounded with refusing meds at home does not sound like a good combination. How long has she been in the nursing facility? If it has not been long, she may not have had time to adjust to her new routine. A medication change may help and you might try getting recommendations on meds to help the anger from an HD center of excellance. Many would be willing to talk to the NF to confer with them on meds that may help in her stage of the disease.
Some NF will do a 10 day bed hold when a patient goes to hospital in anticipation of returning to the NF but she may lose her spot and they could refuse to take her back. At the very most i would try to adjust meds while she is still in the NF and not try doing it by taking her home.

LizzieAnn. Thanks for the quick response and especially that you hit the nail on the head.
Sounds like you had some experiences with HD patients. My daughter is now 5 weeks at the NF. I asked them for a med review and the daughter refused to talk to the therapist. So now we are on hold. I really would like to have her at home but as you were saying the idea is full of problems. Can you think of anything of how I could establish a better relationship with her? We did get along untill the end of 2012.
I am unsure of how much I should visit. Had been going every day. Now I am skipping some days and she does not seem to care. She is just mad......Again, thanks LizzieAnn!

I know Phd's in the later stage have difficulty communicating verbally. I know my husband hears a lot of things i am saying but he may not respond or says something back that makes it apppear he did not understand or hear me. Later a word will come out of his mouth ( could be hours later) that tells me he heard atleast some of what i told him. He just can't get the right words to come out.
So, i might tell her you understand she is feeling angry at HD, and that you love her and are going to do your best on her behalf to try to get some help in fighting this disease with her and on her behalf to find some meds that will help her find joy in some days. Tell her you understand she has a right to be angry at HD and that you are too, but mostly that she as to deal with HD makes you sad. Do you have any home movies of days when she was younger? Make copies ( not the originals) and take them and watch them at the NF- make sure she gets to see nurses seeing her when she was healthy and maybe younger so she will know they see her for herself as she remebers herself. I think thats a good thing for all NF residents to share with everyone their young memories. It can be a bonding thing and they may feel like, hey these people now know me when i was young. If you can't do home movies you can get a bunch of copies of photographs thoughout her life and put them on a wall as a conversation starter. Copies only, as with anger they might all get torn up.
Maybe to give her time to adjust ( tell her that) that you are going to come see her on (saturdays).

Also, anger is a way of "distancing" ourselves from someone. Tell her you understand she is wanting to distance herself from you for awhile and you are respecting that. She may come back with an intersting response to that one



Edited 1 time(s). Last edit at 07/14/2013 08:04AM by LizzieAnn.