Delusions can be a big part of Huntingtons with some people. I have a sister who is completely delusional. It really keeps us on our toes to try to keep up with all the different ideas she comes up with. Trying to reason all the time with someone who has an altered grasp of reality and a 5 second memory span is a full time dance/job. She keeps coming up with these brilliant ideas but because she does not see her disability at all she feels she is capable of everything and everything. She decided one day that she was going to get her driver’s licence back and become a real estate agent. She wanted to have another baby. Just wild and crazy ideas out of thin air, and most of them involved running away from us because we were not letting her do any of doing things she felt she could still do.
I know a small percentage of people with HD become delusional but l never knew until experiencing it first hand just how debilitating is can be for the person and the family members. She makes up false memories in her head. She remembers things that never happened, but because her delusions are so strong she can no longer separate reality from fantasy. A few months ago we had no other choice but to put her in a care home. We stalled as long as we possibly could but it does not lessen the guilt in feeling that we have somehow failed her. There had been a bunch of different scenes that had gone down with her and in the end she became a danger to herself, others, and a flight risk. We became the enemy because she did not see herself as disabled she blamed us not her disease for limiting her.
It is hard when the dynamics of your relationship changes so rapidly for the worse. About 15 months ago she was working, in a relationship, and being a parent, but she was not doing well at all with any of these responsibilities she had been gliding on auto pilot for years. Once our other sister started caring for her and living with her she just starting to let go. I know it took a lot of her energy to try to keep herself together with the HD. Her chorea has been bad for years and I know that robbed her of a lot of her energy. But she is only 51 years old, it does not seem possible that her life is almost over. This disease has really had its way with her. All we could do is watch helplessly from the sidelines.
It is always an extra hit as we are all well aware that I also have the same disease. My family is afraid of my going the same way our sister did. I am more afraid now than I ever was before. My family assures me that I will never be like that but we all know that is wishful thinking to some degree. No one knows if I will become delusional or not, we can only hope I don't. My sister has now been in care for 4 months and she was still calling everyone she knew to come and get her out and take care of her. Some people stopped answering her calls years ago. And because of her nonexistent memory she forgets she has called the same person and left multiple messages on their answering machines. Each day for the last 15 months she would announce that someone was coming to get her and take her home to care for her. No one ever called back, not once out of the hundreds of phone calls she made and messages she left.
In the end we had no choice but to do a long distance block on the house phone. We are talking pages and pages of phone calls. After she went into care my other sister who is her POA tried to give her another chance with the phone. After one week at the care home she had already made 138 phone long distance calls. She is obsessive compulsive over the phone. She is like a junkie, she just cannot help herself. I have wondered just how many times a day her head tells her to call someone.
It is really hard to deal with the craziness sometimes. It is like arguing with a drunk; they are not going to get what you are saying and then they are not going to remember the next day. And yet I still find myself trying to help her understand what happened and why she cannot call long distance or why she is in a home, or why can't I just take her home and care for her. I felt mean each time I had to remind her that she is delusional and remind her off all the ways she cannot care for herself but because she does not see any of her disabilities she does not really understand why she is now in a care home.
We try to take her out at least once a week to go to a movie at the theater and dinner but it will never be enough for her. She has never been happy no matter where she was and that was true of her entire life. All we can do is hope eventually she will come to accept her new home. But it is the same conversation each and every time starting with “Why I am here?” followed by “Did you bring your cell phone?” She is locked onto a bunch of different themes at the same time.
I find the whole thing so heartbreaking for all of us. She lived far away from us for a lot of years so we only saw her occasionally. We really had no idea how bad she had gotten until her initial deep six after she left her husband. I wish the cure that is right there on the horizon would come in time for her but I know now that even if there was a cure tomorrow it is too late to save her. This is my oldest sister who was always good to me so I have a lot of love in my heart for her. But she is breaking my heart right now and I feel so helpless inside. I would do anything for her.
The level of stress in our family dropped considerably after she was put into care. My chorea was at an all-time high which was really freaking my family out. It really scared me too because I knew it was either the stress of being around my sister all the time or my disease had REALLY progressed in the last year. I am relieved to say my chorea has now dropped right off. I know firsthand the difference stress can make in my severity of my symptoms. At lease there are no more scenes in public with her now.
One of the scenes was when I went to take her out for lunch and she said something crazy to the cashier. I told her we had to go home and could no longer stay for lunch; she crossed her arms and refused to leave the store/restaurant. She said "I am sorry I made a mistake I won’t do it again." I said we need to go; she said noooooo. After 5 minutes of her standing there arms crossed refusing to leave I finally got her outside by saying look we obviously need to talk about this and I would rather not do it in public, please come outside with me. She finally did. I then told her we needed to go home and went to the car which was parked about 12 feet away and I sat in the driver’s seat for another 5 minutes as she stood with her arms crossed just outside the restaurant refusing to come with me. Finally she came. I thanked her for getting in the car and drove her home.
I did not cry until after I had dropped her off at home with our other sister. I jerked all over the place for the next week and really freaked everyone out. I also have HD and can be obsessive compulsive so that scene in the store just kept replaying itself and I would jerk all over the place. I cried hard for the next week because I knew I would not be able to ever take her out on my own again now. My family is very small so there was only me and our other sister to care for our HD sibling and I have HD so she never wanted to ask too much of me. But as our sister's main caregiver and POA, my healthy non HD sister's life completely fall apart with all the extra stress and responsibility.
I very much remember her being against us all sharing a place as she felt my living directly with our HD sister would add way too much stress on me. I went along with it but I really did not agree with what she had said. Wow was I ever wrong! I was only the backup band but I know how much to affected me. I can’t imagine how much worse my stress level and chorea would have been if I had been the one living with her for the last 15 months. I am so saddened by all of this. Other than the outside package this new stranger does not resemble my old sister in any way. She has our Mothers eyes but it is not really her, just a pale imitation. I hate this disease so very much.
I cannot tell you how much I am hoping and praying for that cure to come in time for all of us. They are so very close with the gene silencing. Way too many generations have had to deal with the effects of this disease. HD is a family disease as everyone who is touched by it cannot help but be affected. Most of my family is gone now. I have HD, my sister has it, and a first cousin has it plus there are two more kids in my family who are still at risk for it, but that should be where it ends in my family either way. Once there is a cure so many lives will be changed for the better.
Remember-- "It takes two to speak the truth, one to speak, and another to hear."