Staying sane while living with Huntington's and dealing with affected family members can he a huge challenge for HD families. We are all set to different levels of sanity so some of us have more to spare then others do. I have always found it funny that it is the insane people who believe themselves to be completely sane but it is the sane people who actually question their sanity. So if you wonder if you ARE crazy it is actually proof that you are not. Crazy but true.
My oldest sister who is 52 and living in a care home has not been sane for a few years now. AS her family we know her mind has been gone for awhile but then things happen that make you go wow she is even more far gone then I had thought. Case in point there was an official person she had to see just recently and within 4 short questions her insanity was glaringly obvious. First they asked how old her son is and she said 8 when he is 9. Then they asked when his birthday was and she had no idea and said I don't know. Then they asked her where she was currently living and she answered her old town in Alberta that she has lived for years which is wrong she is now living in a care facility in BC 30 minutes from where we live. And then she said to the person "is there a dog in here?" And when the person left the office to grab the paperwork she said to our other sister "can you hear a dog, I hear a dog in here." Which was a complete hallucination as she was in an office in a city. While such stories no longer surprise me they do indeed sadden me as if shows just how far her brain has deteriorated. Only 5% of people with HD will develop psychosis as one of their many symptoms and my sister has been losing pieces of herself for years now.
A complete lack of energy has become a huge problem for her as well. About 6 months ago me and my other sister had taken her out of the care home and out to dinner. During the meal I noticed that she had kept looking at her lap. She looked at her lap for over half the meal. I assumed she has spilled something on her lap and was obsessing on it by not being able to take her eyes off of it. So after we had dropped her off I asked my other sister what our HD sister had dropped on her lap and she told me nothing...she said that she was now so tired from eating that she was now having to drop her head down to rest it in between bites.
Her head just gets too heavy sometimes and that is happening more and more often. She also now needs a wheelchair to get in and out of the care place and soon will need one while she is in the home as well because she had no energy at all these days and also is constantly falling. Plus because of the reduced diet she is on and all the meds she is now taking she has lost a lot of weight since she went into care. She is choking almost constantly on what ever she tries to eat or drink as well.
Some of the people involved in her care do not understand that it is not the food itself or liquid itself that is making her choke on what she puts in her mouth, rather it is a mistiming in swallowing that makes HD people choke. Well intentioned health professionals can and do put HD people with choking problems on liquid diets but it rarely corrects the problem as it is a timing issue.
Insanity runs in both sides of our family, our biological fathers family had almost 100% HD positive people for generations in our family tree. My mother's family had a lot of mental illness as well, so maybe we ended up with a double dose of crazy in our bloodlines. My one HD Uncle was sure he had cameras in his knees that the enemy was watching thru, he actually threw a blanket over his knees to block the cameras when family came to visit in order to keep them safe. Which showed that his heart was in the right place even though his mind was gone.
But the most insane HD psychosis story I ever heard was in the HD chat rooms I ran for four years about ten years ago. There was a guy with HD who thought his wife was an alien. She said she tried to laugh it off in the beginning. But he kept on about how he was afraid that she was not only an alien but that she had been sent to kill him. One night she woke up and he had a knife in his hand and was standing over her in bed and said he has to kill the alien before the alien killed him...he was put into care immediately. But wow what a difficult time it must have been for both of them. No matter how much she tried to convince she was not an alien he did not believe it and felt threatened by her very presence. His loss of trust towards her and having to put him into care broke her heart. I don't remember how long they had been married but a long time anyways.
That story always really freaked me out and I really hoped that I would never develop psychosis myself in the future. Thus far I have escaped it but my sister did not, she is right in the middle of it. She still believes she is capable of going back to work, raising her 9 year old and being in a relationship. Not only does she think herself 100% capable, she will say she is actually still doing all these things when asked by a DR. It is easy to understand why some HD family members think their loved one is lying to them when they make up such wild stories but the hallucinations really can take hold of them. If someone honestly believes what they say when they say it does it make them a liar or just inaccurate?
Four weeks ago I hurt my knee badly and was bed ridden for three weeks before they operated on it last week. It has given me a whole new appreciation for all the things a disabled person needs help with or done for them in the run of a day. I have gained a lot of insight into what it feels like to be bedridden and I did not like it one bit. I was able to walk away from being bedridden because of the surgery but many people with various disabilities are stuck there full time. My heart goes out to all those people who are forced to depend on others for most things the rest of us take for granted. Thanks so much to my Dad and sister who cared for me those long three weeks, I salute you both. I know they are as glad to have their lives back, as I am to have my independence back.
My family and I are doing our best to stay positive in the face of the craziness around us. For me staying sane has a greater value then for the average person. Keeping busy doing the things I enjoy helps to keep me sane as well. I am still singing with my sister and playing the guitar as well as keeping in touch with my family and friends. I am looking forward to being able to serenade my sister this summer now that the weather is good enough to take her some where nice.
I wanted to let people know how insane this illness can be for the person with HD and their family members. To the average person my story sounds like something out of the twilight zone. But for the caregivers who care for the people with this devastating family disease every moment of the day, this is the story of their lives and is just another day, week, month, year, decade and lifetime. Sadly most of these families are also caring for multiple HD people in the family at the same time, it is a multigenerational illness.
"When life is sweet say thank you and celebrate. And when life is bitter say thank you and grow"