In the world today there are countless diseases, some preventable some not. Several of them are lifelong but cause no serious terminal issues. Others have a slow or fast onset with deadly symptoms. Either way, whether it be one disease or another, each person contracting or born with a disease all have one thing in common: Psychosocial issues. These issues describe the mental rise or decline a patient has when he or she is diagnosed with a disease. It also describes the family, and their mental rise or decline as well.
One illness in particular that has an abnormally high decline in health and psychosocial coping is ‘Huntington’s Disease’. From the patients’ side, their decline comes from knowing that their life will end because of this disease ultimately and watching themselves lose control over one body part or system after another. On the familial side, having to give total care to this person is just as equally difficult because of the hardships that come along with it. It is necessary to understand what Huntington’s Disease is and what it does to the human body.
This will be explained as well as each side (the patient and family) being thoroughly described by the end of the research. Huntington’s Disease is a progressive brain disorder caused by a defective gene in chromosome 4 – one out of the 23 total chromosomes that care a humans’ genetic code. This specific defect is deemed ‘dominant’, which means that anyone who inherits this from his or her parent, will indefinitely develop the disease some time in life. This defective chromosome creates the protein called ‘huntingtin’.
This protein has been known to be the cause of ‘Huntington’s Disease’. This protein leads to the brain changes that create the persons’ severe decline in thinking and reasoning, involuntary movements, irritability, depression and other mood changes. The symptoms of this disease on a general note develop in the prime of life, between the ages of 30 and 50, but can appear as soon as 2 or as late as 80. One part of the symptoms are the movement disorders which will include both involuntary movements and impairments in a persons’ voluntary movements as well.
For example: •Involuntary jerking or writhing movements, otherwise known as chorea •Involuntary, sustained contracture of muscles, also known as dystonia •Muscle rigidity •Slow, uncoordinated fine movements •Slow, abnormal eye movements •Impaired gait, posture and balance •Difficulty with the physical production of speech •Difficulty swallowing Following the difficulty moving, the cognitive disorders create another issue, especially with a persons’ day to day activities. A few examples of this would be: •Issues with planning, organizing, and prioritizing tasks •Not being able to begin a task or start a conversation.
•Lack of awareness of one’s own behaviors and abilities •Spatial perception issues which causes falling. •Difficulty focusing on a task for long periods Psychiatric disorders are included but the most common is depression. This is not simply caused as a reaction the disease. In fact, it is actually because of the injury and changes to the brain. To name a few, some of the signs and symptoms are: •Feelings of sadness or unhappiness •Social withdrawal •Feelings of worthlessness or guilt (Mayo Clinic, May 2011) Other mutual psychiatric disorders include: OCD, Mania, and Bipolar disorder.
Needless to say, this is a very difficult degenerative disease and definitely a life changing one in which much family support is needed. Now that the cause and the symptoms of Huntington’s disease are known, it is necessary to go into the psychosocial effect of it on the diagnosed and the family. Family support is, without argue, one of the strongest forces that keep a lot of human beings ‘going’, for the reason that this is one group of people that, no matter what, will remain a constant in your life, whether you want them to or not.
‘Bowen’s Theory’ is a great explanation on what family is viewed as: “The essence of the theory holds that a family is one dynamic emotional unit, one system of individuals who are all interrelated, where any changes in the life of one will have an effect on behavior, thoughts, and feelings of everyone else. ” (Bowen, M. Family Therapy in Clinical Practice. , 1978). When it comes to having HD, some families break apart since a lot of people, realistically choose not to ‘deal with it’ anymore as it requires a lot of patience, time, and mental stability.
Having to be the one on the receiving end of the disease also causes anguish and stress in their own right as well, knowing that your family will have to be your sole form of assistance, especially as an older adult understanding that you are not even into your 40s and it is required that you have a caregiver. Needless to say, a lot of adaptation is necessary on both ends. From a family point of view, things that go on in their head are feelings of deep sadness and sorrow for their loved one and the strong need to help and do all that is possible to make their situation more comfortable.
Years down the line after being the caregiver of whom is diseased, it is human for one to be burnt out. Tired of giving up their life for their loved one, even though it is ultimately the “right thing to do”. They love them wholeheartedly and only want what is best, but in the back of their minds, they become weary of the doctor visits, keeping up with medications, getting them cleaned, clothed, and cooked for on a regular basis.
This is especially true of a child taking care of a parent; they may feel like their entire life is solely dedicated to their parent. It begins to cause depression in the individual and sometimes resentment toward the parent or individual with HD, even though it is known that this disease is hereditary. At times, it gets to a point where the family has to decide whether to put their loved on in a long term care facility, and the ethics involved in it.
They feel as though in order to live out their lives as they wish, should they keep this family member home and continue being the sole provider for him and her, or send them to an institution with a great amount of other patients where they really do not know if they are being taken care of as they should or not. This is a hard decision to make because who really wants to put someone in a long term care facility? But, sometimes it is necessary in order to maintain peace of mind, or to keep finances afloat.
As stated by Jean Harker, “One of the major reasons for entering a nursing home is that the person’s health is poor, requiring nursing care that is not available to them at home. ” (Jean Harker, 1997) , with that being said, when a family member becomes increasingly difficult to care for, such as what is mentioned above, the family as a whole may have to resort to looking at the facility in a different light, like, “Well, there is a strong possibility that the institution would be able to take care of mom better than we can at home as her disease has heavily progressed over the years.
”. To say the least, it is rather complicated to be the family member, caregiver, and sole provider to the unwell. As for the diagnosed, psychosocially, having Huntington’s Disease is equally, if not more complicated to deal with as they are on the receiving end of everything. The end of being diagnosed, losing all sense of being and control of their body; and also being on the end of being forced to be taken care of. Knowing that because of this disease, any thought or hope of living a normal life is next to impossible since it is progressive and only gets worse.
On a personal note, I would think that this is the more difficult end to be on. As this rather lengthy quote states, “Emotional cutoff is a term used to describe the creation of a psychological barrier that makes a person “blind” toward a current issue that is emotionally charged, in an attempt to manage certain aspects of the relationship that have not been resolved in the past. Bowen associates this approach with those who have a low sense of self.
Insufficient confidence in one’s ability to deal with the situation results in an emotional closure whereby any thoughts related to the dreaded issue are suppressed. It is a process of one’s separation, isolation or withdrawal – a mechanism adopted to deviate away from the sensitive topic. Emotional cutoff can be seen in family members and spouses of an individual who has been diagnosed with HD prior to the onset as well as during early stages of the disease. ” (R. Goldbeck, 1997) It is a rather emotionally draining feat to have this disease.
From the beginning, the acceptance aspect of being diagnosed may be one of hardest parts. Feeling like giving up because you know that this disease is the end of your ‘normal life’. Also, as HD progresses, it physically causes the body to resort to depression and apathy. Overall, just a hard pill to swallow is what the individuals with this disease have to deal with. All in all, Huntington’s disease is a degenerative disease, affecting the brain and causing many physical, as well as mental changes to both the family as well as the diagnosed.
Fortunately, there has been much research done in the past 10 years which has helped with allowing the overall quality of life of the patient could potentially be improved. There is no cure as of yet, but many researchers have been working hard on a cure. Many families have also been affected for generations upon generations with this disease to the point that they create funds in order for research to carry through. Stem cell research has been a big part of this, and as findings continue, so will the health of those diagnosed with this tragic disease.