Trying to figure out what stage of HD my sis is in and what to do...

She had a mess up in medication while out of town. She was out for a day (sick, sleepy, etc..) Then 2 days later on the ride home she became agressive and verbally abusive in a gas station refusing to leave. Mom and step dad left her and called our dad to pick her up (which is what she wanted). She insisted that I come to talk w/her. (even though it was late at night). I did come to see her because she was implying that she had been assaulted. When I got there she wouldn't say anything until I took her back to my place. I explained that I could get her the next day in the evening but I had several obligations the next day. She became explosive and claimed I hated her and did not really love her and said she should just die (then she broke free from my dad and I and took off... in middle of night in a city...) After searching for 2 hrs with police (in the dark) we found her and they took her in (prsch eval and petition for treatment). She was out of control once in the hospital and blames me, even though the EMT's heard her threaten her own life.

It seems as though my sis's primary caregiver (mom) isn't strong enough to force my sis to take meds correctly and she often gives my sis to much responsibilty because she "seems" okay more often than not. Then, every time the shit hits the fan!!! Our step dad still thinks that he can tell my sis she is acting like a child and she will "fix" her behavior.... I get it, but I can't assume the careegiver role because of work and my own kids safety (my ex would try to take full custody, because of my sis's violent behavior in the past: which I wouldn't blame hiim for... My daughter, 5yrs, old has already seen more than any preson should ever see).


Is it fair to continue to ask my mom to assume home care for my sis or should we consider NH placement??? It seems to early for me, but when it goes bad, it goes really bad and I fear my sister is dead. I feel I am letting my sister down as I know she wants to live with me. The fact is if I take her, I will have to let my kids live primarily with their dad (he's an awesome dad, but my kids need me too).... My sis really thinks I am betraying her and I feel that I am too...

I am so sorry that you are having to go through this. It really does seem like a nursing home would be an option. I don't know if there is such a thing as an adult day care that can deal with an HD person. It really sounds like your sis needs a bit more care than your mother can give her. I am praying for you and your family.

It is important to realize that with HD there are seldom ideal solutions to problems. We cannot focus on just what we want to have happen but must consider what we don't want and are afraid might happen. Safety must come first. Your five year old's safety is paramount since she is a child; if your sister is violent and refuses medication then you are quite right to conclude that she cannot live with you.

At your sister's stage of the disease, it might be very difficult to get nursing home placement although it is a good idea to explore this possibility while you have assistance from the social worker at the psychiatric hospital. If the psychiatric hospital succeeds in stabilizing your sister, perhaps the social worker can mediate a family meeting about future care. I sat down with my ex husband and drew up an agreement at a point when he was doing much better on medication, specifying what he needed to do and what I needed to do for him to continue living at home with me (regular doctor visits, taking medication as prescribed, etc.). I was able to keep him home with me for another five years. At one point, after he became angry and grabbed my arms and bruised them, he called the doctor himself for a med increase! (I filed for divorce later after he insisted that he had the right to hurt me as long as he didn't kill me and the doctor refused to change his medication). It may be possible for your family to draw up an agreement that keeps your sister home by specifying everyone's responsibility.

You may find that the social worker does not understand HD as well as HD families and HD specialists so you may need to educate her and the whole family. I'd download the Understanding Behavior in HD book from the HDSA website for family members and the social worker and anyone at the psych hospital who would agree to read it. As I have said before in another post HD is not like AD and evaluations used for AD patients may make it seem that an HD patient is less impaired than he or she is.

Good luck and keep us posted!

Bluedaisy, I think it is the entire familys responsability to care for the family member as long as it is safe, maybe switching family menbers houses for a while? About the 5 yr old...she doesn't need to be put in that situation of fear or possible hurt and if she was to inherit the HD can you imagine the fear she would have knowing that she could be like your sister! God be with you my friend !!!!

I was able to find a placement for Tim in a NH that has a behavioral/psych unit. It has been a blessing. This was after placement in one "HD" specialized NH (not) and one regular NH (where he lasted for 12 days before becoming out of control) So far there have only been outbursts occasionally and mostly directed at me...it will be a year at this place September 5th. He went there from a psych unit in a hospital.
I am sending you hugs {{{{bluedaisey}}}} because you need them! This disease is just so awful, so awful.

Take care and keep us posted.

Carla

It sounds so so much like my husband, different name, diffierent situation. at leasr she is in the hospital hopefully they can stablizer her and get her more help. in and into a NH.

I know I am new to this site but one thing I have found out is that routine and stability is paramount to an HD individual . If that routine can not be provided the situation gets worse. Even a planned trip or outing can trigger undue stress and emotional outbursts. The routine of same activity at same time weekly, daily, is so important.

My mother is almost 81 and was diagnosed when she was 78. She had a routine of walking around her neighborhood which my dad thought was dangerous because she would become disoriented occassionally. Instead of choosing to walk with her, ( which would have been good for his health too ) he chose to forbid her to walk and as a result she became more and more isolated and less communicative and more contentious and angry.

It is so easy to pretend that these are individual incidents and not part of the progression of the HD. I do encourage you to be strong and sit down with a mental healthcare professional that is compassionate concerning the HD and your situation. If you do not have a mental healthcare professional that is familiar with your family then be sure to go to the HDSA site and forward the information given to help inform healthcare professionals that will be working with HD families.

The person in charge of your sister's healthcare must have not only the courage but the physical strength at times to do whatever is necessary to keep the HD person who is confused, and frustrated and cognitively and emotionally disturbed in a safe environment. If that means a facility or that you have at home acess to medical help that can administer a calming shot or medication when necessary, then so be it. The safety of those around is important as well as the safety of the HD sufferer. It may mean installing security camera for observation or/ and at times locking the doors to the outside in order to provide limited freedom of movement within a safe environment of the house or a locked gate in a fenced yard, just as they do when they lock the doors and have security at nursing homes.

You and your family must sit down and consider what are the alternatives and what you can afford and still have your own lives. It may be that she is to the stage where there is no alternative but a nursing home,if she is a danger to herself and to those who are trying to care for her.

A regularly scheduled day at an adult day care center can provide relief for both the caregiver and the person with HD if it is a regular routine.

This is soooo very important. Regular routine. Same thing every Sunday routine, same seat in church, same class, same time. same place to eat. and even if the routine changes for Monday, as much as possible the routine of each Sunday, each Monday, each Tuesday , etc. should be on the calendar and remain the same week in and week out. This is part of the security and comfort of a care facility. Bath same days, around the same time, medications same time, meals same time, activities in the center are posted on a calendar and are routine. this provides security and stability and thus fewer and less severe emotional stresses and resulting outburst. If is scary to an HD person to be in a situation that they are unfamiliar with even if they are with familiar people. sometimes even preparing them verbally and reassuring them that this is what we are going to do, and we are stopping here for what reason , and we will be here for so long and continually reassuring them that you will be there provides the needed stability, sometimes not, but never, never surprise as it is so disconcerting and the fear and anger and confusion result often in physical confrontation with those responsible or those the HD Suffere think is responsible.

Your child, is a child and children are spontaneous and that is something that she should be able to retain . You can not sacrifice her childhood for your sister, but you could give your mother a break on the days and evenings that your child is with her dad. Not every time but every other time or once a month, just so your sister knows that one weekend on a regular basis will be spent with you. Again routine, repeating the same thing whether daily, weekly, monthly or even yearly as on holidays, is a must for the HD person.

God bless you and guide you to the answers that are right for you and your family.

Thank you for all the advice. Switching homes isn't really an option as everyone in the family is already taxed. Great aunt is caring for my sis's kids, dad has HD himself and while he is doing quite well: he just can't care for my sis as he believes any false information she tells him and he has cognitive decline that makes him not capable of making sure she takes her meds and keep track of her appts. My brother lives out of state and is a recovering addict & at-risk for hd, that only leaves me and my mom. I work full-time, and am gone to long for her to be w/me. I do realize that I need to create regular visits and outings with her. She did live w/me last year before it became apparent that she needed someone always with her. Then she moved to my moms yet I still saw her daily and had her for weekends. It was fun. But issues arose and my family often was angry w/me for my stance on her care. I was told to butt out since I wasn't having her live w/me. It hurt. I quit smoking this summer, began exercising, started graduate school, and just focused on my kids and my health. I think I needed that as I was feelinglike I was drowning in the sea of HD discontent. I am very oppinionated about my sis's condition and know that she could be doing better if she had me to advocate for her. Doc visits, court appts, parenting visits, supplements, diet, exercise, etc... But the truth is I can't give up my career to be with her daily or even her doc visits (she has many), or even daily routines,... I am a single parent living on a teachers income.

I try to offer my advice and am constantly informing my family of the information I learn from here and everywhere else; yet most of it goes right out the window. Then when I try to help, I get the cold shoulder. So, this summer I just alienated myself from the situation and lived selfishly in my own little family. It's hard to see family with HD and not doing the things that could help. But, I was eating up all the stress and had developed excrutiating pains when I thought about the situation. Turns out I have stress induced gastritis. Inflamed and bleeding stomach. I am a fixer. I try to fix everything. Come up w/a plan and the act it out, follow steps/ learn to cope and keep living. It has worked w/ most things in my life ( and I have had many life tragedies) but my action plan isn't working for this situation and I don 't really know how to accept that. It's worse than coping w/ death because there isn't any finality: just chaos. Always waiting for the next bombshell. Not that I want to lose my sis, absolutely not! I need her, she has always been my friend and a wonderful mother. It's just painful to see HD destroy her life, mind, and joy.