One of the blessings that come with Huntington’s Disease in the family is that you will, if you do not already, come to treasure the family and friends who offer continued support and friendship as well the new friends who will become your extended family.
We live in a society that glorifies youth, beauty, and health, devalues the elderly, and denies the reality of death. This pretty much guarantees that there will be family and friends who will be unable to offer the support we need. In addition, Huntington’s Disease carries some extra baggage with its genetic component that further complicates some family relationships.
The same friend who listened endlessly to our career woes, dating difficulties, or mother-in-law problems may just not be there to help us to cope with Huntington’s Disease. The at-risk brother-in-law who is the life of family gatherings may stop visiting our spouse or inviting us to his home once our spouse is symptomatic.
I’ve seen people waste an extraordinary amount of energy on people who should be there and are nowhere to be found. It is not worth it. Deal with this issue up front and get past it. Write some people off, forgive others and hope they come around, and accept the limited friendships that some people are able to give. You cannot afford to waste the time, energy, and emotions to continue to engage with people on this issue.
Instead, treasure the old friends who are there to help, the new friends we meet along the way, and the family members who help fight our battles with Huntington’s Disease along side of us.
I put people in four categories. The first is the category of people who are callous or mean and not worth taking the time to understand. Fortunately, most people in our lives are not going to be like this.
I don’t know why they act like this and I’m not going to try to find out either
One online friend told me about her mother in law. She apparently made a heartless and bizarre decision to write off the son with Huntington’s Disease and embrace only her healthy children. Who knows why someone would do something like that? I do not know why, I do not care, and I do not want to know this woman. Life is too short to spend any time or thought on people like this.
Once my friend needed to go to the doctor for herself and could not find anyone to sit with her husband after the arrangements she had made fell through. She called her mother-in-law and asked her to come. This was the first request she had ever made after years of caring for her husband. Certainly her mother-in-law had never helped in any way. She did this time; she came and sat with her son while my friend visited her doctor. Later she complained about her daughter in law throughout their small community. Was her mother in law incredibly irritating? Yes. Worth venting about to friends? Absolutely! Worth stewing about? No. Some things are their own punishment. What would you think if a mother complained to you about having to sit with her disabled son when his devoted wife needed to go to the doctor herself? Yes, that’s what I would think, too, and so did everyone in town.
A caregiver in England had the unfortunate experience of running into his sister in law at a community gathering. He and his wife with Huntington’s Disease were manning a table with literature about the disease. Her disease was becoming advanced but she was happy to be there, happy to help, happy to be out in the sunshine. The sister-in-law, who had tested negative, asked her brother in law in front of her sister, “Haven’t you put her in a nursing home yet?”
These people have their own issues. Maybe they feel guilty for passing on the gene or for testing negative and they’ve reacted with misplaced anger toward others. Maybe they are people who avoid unpleasantness at all costs. Whatever the cause, their behavior is toxic and needs to be avoided.
They may be suffering too so just wait for them to come around.
The second category of people are those who should be there to help but aren’t because they haven’t dealt with their own serious issues. When Huntington’s Disease was new to me, I simply could not understand those people who wouldn’t just do what it takes to resolve their problems and be there for others. This is comparable to wondering why people with a clinical depression do not just use willpower and ‘snap out of it.’ Then I became clinically depressed and understood for myself!
I learned about this issue when I once spent an entire night in a chat room with someone who was at risk for Huntington’s Disease and was agonized over not being able to bring himself to visit his end stage mother. He was considering suicide. He had gone to a psychiatrist, a support group, and had a lovely, caring wife. It wasn’t enough. He visited the chat room often over the next few weeks and explored his feelings with others who understood. Eventually, he decided that he still had hope for his own future. He might not have the gene. If he did, there might be a cure before he got sick. Even if he did get sick, he would find a way to live positively. He resumed working with his psychiatrist. Finally he reported that he was able to resume visiting his mother. Our final contact came when he came back one more time to report that his mother had died peacefully, that he had been able to say good-bye, and that he believed she was now happy and whole in the next life with his late father.
I wrote the following for a grandfather who was disappointed that his grandchildren weren’t ready to forgive his daughter, their mother, for their difficult childhoods, now that she had finally been diagnosed with Huntington’s Disease.
There is nothing that you can do right now. You'll just have to give it time and see if your grandchildren turn to you. They are adults now and you have no control over how they choose to live their lives.
There's a big difference between what one knows intellectually and what one knows in the heart. This is all new information for them. They are very angry about their childhoods, angry at their mother and probably at anyone who could have intervened sooner on their behalf and didn't. You are their mother's father, you have always loved her no matter what and you always will. For you, being educated about the behavioral aspects of HD explained so much. You must have felt all along that the person you were seeing wasn't the 'real' daughter you raised. So you expect that your grandchildren will react the same way you did. They won't - they are young adults, they have a different relationship with their mother than you do and you've now told them that they are at risk for a really bad disease.
It may be that they will come around eventually and reconcile with their mother. But right now, it very likely seems to them that you're telling them that they don't have a right to feel angry, that they shouldn't feel bad that they didn't get what they needed from their mother, that they have to forgive her - in short that they are not entitled to their feelings. They are. When we are young it can be hard to forgive because it seems like it means minimizing that we were wronged when we need to feel validated.
As others can tell you, denial is endemic in HD families and it often results in not very attractive behavior. Think about this, accepting that their mother's abusive behavior is a result of a genetically dominant illness would make her children think that there's a 50 percent chance that they will become just like her. Now you and I know that this isn't so - that a diagnosis and medication can give HD positive people many more happy years and that the research is progressing at a very fast pace. But remember, this is new to them. You've done all you can do for now. Let it go for a while. You're in good company, sad to say.
I think all we can do is educate when we can, offer hope, love people despite their limitations (and we all have them), forgive them, and keep a light burning in the window. I'm betting they will come around.
They don’t understand Huntington’s Disease but I can still enjoy their company
Huntington’s Disease is such a bizarre illness in so many ways, that it’s no wonder people who don’t live with it on a day to day basis can’t understand it. Even the caring physicians who specialize in treating Huntington’s Disease patients don’t quite ‘get it.’
One of the most striking aspects of participating in chat room discussions is talking to caregivers who are interacting with others in the HD community for the first time. Inevitably there are discussions about behavioral and psychological symptoms. Everyone can understand about involuntary movements, swallowing problems, and an unsteady gait but the other symptoms are harder to grasp.
Conversations would go like this, “My wife has Huntington’s Disease and I notice that she wants to be more punitive with the children. Everything is right or wrong, there are no nuances anymore in how she thinks we should discipline. Is this a symptom?” “Yes it is.” “My husband gets a thought in his head and he just won’t let it go. I can’t distract him or redirect the conversation. Is this a symptom?” “Yes it is.”
The conversation would unlock the flood gates
“Well what about…?” “Yes, that’s a symptom too.”
“Yes, that too.”
“Symptom. Symptom. Symptom.”
We shouldn’t be surprised when our friends don’t understand . Keep in mind that we all tend to complain about family members to our closest friends. We do this precisely because we know they won’t take us seriously. If a friend with a healthy husband tells us, “If that man throws his dirty socks on the floor one more time, I’m booting him out the door!” she expects us to sympathize and maybe tell a story of our own about how our husband thinks his mother is still around to pick up after him! She feels free to complain because we know her husband too, we are aware of his many virtues, and we know that they love each other.
So if I tell a friend that my husband’s obsession with a clean counter is driving me crazy, she’s bound to take that remark as a trivial complaint. If I tell her that no, it’s a serious complaint that impacts my life, she may feel the need to tell me that life is short and that I shouldn’t sweat the small stuff.
She won’t understand that it’s impossible to cook when a man is standing over your shoulder, ready to throw out the cooking oil you are using because you have put it back on the counter in case you need more. She won’t feel the frustration you feel because you have just brought in your crystal salt and pepper shakers from the dining room to wipe off finger prints and your husband has swept them to the floor to break. She won’t be ready to scream when you are unloading and putting away groceries and your husband is accusing you of using the counter to do it just to make him crazy. She won’t be livid when your husband has taken a hot lid off of a skillet with food you’ve been keeping hot on the stove in case he wants seconds and put it on your antique dining room table instead of the trivet you keep on the counter for this purpose.
Considering that I would never in a million years have expected that my husband would get a disease to cause him to do all of the above, I cannot expect that others are going to easily understand. But I can still appreciate my friends. I can enjoy going to lunch or on shopping expeditions. I can laugh at their funny stories and enjoy the latest antics of their children or grandchildren.
I would only be hurting myself if I stopped listening to my friend’s everyday complaints with sympathy, if I couldn’t agree that, “Yes, men will just drive ya crazy!” It’s true that she lives in a different world than I do, but it doesn’t hurt to step right back into it.
And it may be that someday they will understand Huntington’s Disease. My friend, Barbara, whose husband has HD, was recently startled to have her best friend Leigh confess to her that she had never understood what she was going through. Barbara had talked quite a bit to Leigh about her husband’s rages, the difficulties in getting him on the right medication, the 24/7 caregiving and Leigh had always had time to listen. Her almost matter of fact sympathy was just what was needed; no one wants pity after all.
But in fact, Leigh simply didn’t ‘get it.’ Because Barbara’s husband was jealous of her friends, they had always met to socialize elsewhere. One day, however, when Leigh stopped by to pick up Barbara for lunch, Barbara’s husband was in a rage. He was angry with Barbara, angry with the aide that Barbara had gotten to come in to stay with him for the afternoon. Leigh came in while Barbara attempted to get her husband to calm down and cooperate with the aide. She started to understand for the first time what it meant not to be able to leave your spouse alone even for a few minutes, to deal with irrational anger, to be simply unable to get someone to respond to your logic, to be responsible for feeding, bathing and changing the man you vowed to love, honor and cherish, the man who fathered your children.
Friends and family who want to understand and be there for you
There’s going to be a special place in heaven for the third category of friends and family – those who may not fully understood what the disease means to you and your loved one but want to understand and be there for you.
This is what we want more than anything from family and friends but surprisingly we might be the ones to push them away. Maybe we don’t want to ‘burden’ them by telling them how serious the disease is or that we’re having problems or that we’re feeling angry, sad, or depressed. Maybe we’re struggling to understand the complexity of the disease and the changes it brings and just can’t get our thoughts together to share with them. Maybe we are so overwhelmed with everyday living that the only people we can bear to talk to are other caregivers who absolutely know without explanation what we are describing and how we are feeling.
These are understandable and common reactions but we are doing a disservice to distance ourselves from those loyal and loving folks who want to share the journey.
If you aren’t ready to talk in some detail about the changes and challenges that Huntington’s Disease has brought to your life, you need not go into detail. You can give a general statement that lets them know where you are. “Right now I’m immersed in all the paperwork that has to be done to file for Social Security Disability and for the insurance company that carries the disability policy. I miss seeing you regularly for lunch but I’ll call about getting together just as soon as I can.”
You can tell them about the disease a little bit at a time. “This disease has psychological components too. Right now, we’re finding life to be difficult. Jane is struggling with depression and irritability and we’re hoping that her doctor will find the right combination of medications for her.”
You can thank them for their concern. “I am so grateful that you want to learn more about this disease and how it is affecting the family. Right now I am still processing this myself. When I can get my thoughts together I will want to share them with you.”
Making new friends in the HD Community
Realizing that you are not alone and that you can talk and socialize with others who are going through similar experiences is another blessing. Of course none of us want someone else to have to deal with a disease like HD, but we know there are others out there and connecting with them is a wonderful source of support.
Most of the HDSA chapters run support groups which meet monthly. If the attendance is large enough, people usually divide into caregiver, at risk, and HD + groups so that people can speak freely about their issues, concerns, and emotions. These meetings are a wonderful source of support and friendship and encouragement as well as information.
If there isn’t a support group near you, you can always start one, either under the auspices of the nearest HDSA chapter or the local hospital and its social worker may be happy to have you start one up.
Another possibility is to attend support groups at the local Alzheimer’s chapter. Families coping with other neurodegenerative disorders are always welcome.
Internet support has become perhaps the most important source of support for families dealing with medical problems. Monthly meetings and occasional outings are wonderful – and people may not be able to get away if they were held more often anyway – but daily support is very helpful.
One of the advantages of Internet support is that you don’t have to worry about disturbing another caregiver at an inconvenient time. You need information or need someone to listen but just maybe you’ll call just as they are getting time to slip into a hot bath or while they are trying to do three things at once and so you hesitate. With Internet chat rooms, mailing lists, and instant messengers, someone is usually online. The HD community in Australia is a big supporter of Internet groups so even if you are awake in the middle of the night in the States, you are likely to find a friend from Australia to chat with.
As with all friendships, some are closer than others. Some people you’ll enjoy talking to in a group, some in one to one chats. As time goes on, you may meet your Internet friends at a state or national convention. Some of the online support clubs even organize informal gatherings. Eventually you will form close friendships, a circle of friends who are like extended family. There have even been some marriages in the HD community.
Of course there are cautions. What you post on a bulletin board or on an email list will remain for years to come for others to read and you don’t necessarily know who has signed onto large lists. Proceed slowly until you get to know the group and reach a comfort level. One friend felt great after venting about her in-laws on a large HD mailing list, at least until she found out that they were also on the list and rather unhappy with her. I save these kinds of vents for instant messaging with friends.
Also, be careful about disclosing identifying information to strangers. Fortunately, I have found the people that I have met online and then in person to be just who they say they are, but that may be because I take my time and get to know people.
Also, don’t expect that each and every person you meet will consistently participate in chats and e-mail lists over time. Caregivers get busy. Sometimes we are overwhelmed with the things we need to do and don’t have time to participate in online activities. Other times, things are going so well that we have some time to get out of the house more, to socialize with old friends. We might need a break from online support. It does not mean that we don’t care about the HD community. Wish people well as they take a break and welcome them back when they return. If you are taking a break, let your friends know so they don’t worry. The advantage of Internet support groups is that there are always people who are active at any given time.
Family and friends are the greatest source of support to caregivers. They can also be our greatest source of frustration when they don’t understand or willfully misunderstand and when we cannot count on them. Wasting our time being angry or sad about the people who can’t or won’t be there just takes away the energy we need for our caregiving responsibilities. It can also blind us to those special people in our lives now -- and those we have yet to meet along the journey -- who will lighten our burdens and enrich our lives through their caring and friendship.