One of the toughest aspect of Huntington's and some other neurological conditions is dealing with dementia on a daily basis. My sister had dementia for many years and I spent many hours answering all the same questions and trying to explain things only for her to forget and get confused all over again. The dementia symptom I noticed the most was how easily she was confused by things. She started asking a lot of child-like questions as her ability to reason things out was completely gone. She lost the ability for small talk and for initiating conversations.
Because of my own certification as a home support worker I had been trained to work with dementia clients as well given a do and don't list to practice with my dementia clients. Things like making a point of asking them yes and no questions rather than open ended questions that would confuse them. That worked well with my sister years later as well. For some people with dementia, answering questions can be difficult and they may need help in the form of giving them three choices of what they may like to eat or what they may like to do rather than just asking “so what do you want to eat” and them being unable to pull something out of the air like that.
Dementia by definition is the loss of the ability to understand and process information correctly and to function normally in social and occupational situations. People with dementia experience a lot of confusion, poor judgement, faulty memory, restlessness, difficulty following a conversation, fear/anxiety, rambling speech, unstable emotions (laughing, crying) and even withdrawing.
Some times when they are out doing things or even at home they can experience sensory overload where they need to have some quiet time to balance themselves out. The inability to control the emotional flood gate also comes into effect. But the inability to solve every day problems can be what gets people with dementia into major trouble both at home and on the job. The constant forgetting makes it really hard to remind them that problems have already been solved, or to answer the exact same question up to 50 times a day because your loved one keeps forgetting the answer.
I kept trying to explain why things were the way they were to my oldest sister every time she asked why this and why that again. Why she was living in a home, why I could not bring her home to look after her, and all the other whys in her life on her more lucid days for the two years she lived in the care home. I was told by family members to just stop trying to explain those things to her because it was an exercise in futility between her 5 minute memory span and her inability to recognize her own disability and her Huntingtons. But whenever she asked me why am I here I would try to explain it to her over and over again.
It was just my birthday and Christmas a few days ago and I had one of the best Christmases of my life. I got to spends it with my boyfriend and his family and their new puppy which was great fun. And such a huge contrast to my last birthday and Christmas where my sister had just passed away and I was spending my first Christmas and birthday without her. I have come a long way in a year grief-wise and I am looking forward to many happy Christmases and birthdays in the future. It has taken years but I have finally gotten my Christmas spirit back...which is important with my being born on Christmas eve.
Stress is bad for people with dementia too because it makes all their symptoms worse, the same as with Huntington's. My stress level right now is at a life time low and because of that my HD symptoms are at an all time low. Additionally I have been taking an antidepressant for the last 7 months which has done well to balance me out chemically which has made for less stress as well. Life long "habits" that turned out to be part of my HD wiring have been rewritten with my being chemically balanced for the first time in my life.
With dementia there are quite a few things you can do to help the person feel safe and more relaxed. You can try to keep to a daily routine; the predictability is comforting. You can also incorporate different activities into the routine. For example you can pick Saturday afternoons to go out to lunch or Tuesday evenings as pizza night. Another important thing to do for a person with dementia since initiation of activities is impaired, help the person by laying out clothes in the morning. Or assemble items for hobbies. Get cleaning supplies if the person feels like doing chores. It is really good for their self-esteem if they have a sense of accomplishment in doing even one small thing like folding dish clothes for example.
My friend Ross had HD and his daughter lived in another town so she made him his daily routine laid out in order of the pieces of paper that were laminated and held in order with a silver ring. The first one was shower, shave and brush teeth, next was eat breakfast and 6 choices of what to eat, lunch also had 6 choices of what to make followed by take pills, right up to go to bed and the bedtime routine written out and then in the morning he would just go to the beginning of it and do it all over again. As long as he had that he was fine because he always knew what came next.
You also need to be aware of their physical and emotional limitations. After a day out or a visit with family or friends don't schedule anything for the next day. Let them recover with a quiet routine day. You need to be aware of triggers for anger and anxiety and try to avoid them. Simplifying their environment is helpful too. Try to keep meal times quiet and keepthe distractions to a minimum. It is never a good idea to move the furniture either as that may cause injuries and confusion.
There is so much to dementia and so many people suffer from it that knowing how to interact in ways that are easier and non-threating to them is extremely helpful to the person and their families. It broke my heart to see the simplest things completely confuse my sister but being easily confused is a big part of it as well.
I am looking forward to the new year and all the fun and joy it stands to bring with my being surrounded by so many family and friends who love me and accept me just the way I am. I am going to write a new bucket list in the new year and think about what resolutions I may like to make in 2016. I am wishing all of my readers a happy, healthy and wealthy New Year.
Remember---"Ring the bells that still can ring. Forget your perfect offering. There is a crack in everything. That is how the light gets in." (Leonard Cohen)