Ten years ago I never dreamed that four years later I would be confronted with the issue of long-term care for my husband, who was diagnosed with Huntington's Disease (HD). I was unaware that my husband had a 50/50 chance of getting this disease, since I had never been informed about the possibility of the existence of HD in his family. At the time of his diagnosis, I did not know what the disease was all about. However, I was able to secure helpful material and valuable information about HD from the Washington Metro Chapter and from Johns Hopkins. My husband seemed to deteriorate quickly, and it became apparent to me that I could no longer work and properly care for him at home, leaving him for long periods of time during the day.
Having to confront long-term nursing care was an agonizing and distressful experience. But deep down inside I knew nursing home care was the most prudent decision for me to make for him, due to safety issues that affected him and the immediate family. However, for me and many others like me, locating a nursing home with expertise in HD care was not easy to do. Many nursing homes do not accept HD patients because of their inability to adequately provide the kind of extensive care that is required by HD patients (that is, dealing with the falls, hygiene, special dietary requirements, etc. as a patient deteriorates with the possibility of many years of nursing home care).
My husband is a veteran, and I am thankful that I was able to secure a nursing home with long-term care facilities for him with the Veteran Affairs Nursing Home in Washington, DC. This affords me the opportunity to visit on a regular basis and to take an active role in assisting in his care and treatment. I am able to observe changes in his behavior; monitor weight loss, diet, hygiene, sleep habits, general comfort, extreme movements, etc. and make recommendations as well as provide background information to staff members.
It seems that each HD patient responds differently to medications, staff, and surroundings. Since many professional caregivers have never seen an HD patient, I feel that it is important to provide information on care, medication, food, and what to expect as the patient reaches various stages of the disease. Many times professional health care personnel appear to be reluctant to take advice or recommendations from a family member on how best to treat the HD patient. However, I feel that it is our responsibility, along with the health care professional, to make the best decisions for our loved ones. Since there is no one way to effectively treat an HD patient, I suggest that you tour the facility and talk with staff members about your concerns. Be honest and up-front with the staff about your concerns and expectations. Express your thoughts in a firm, pleasant way and provide written material and videos to assist in the HD patient's care.
When you have located a suitable nursing home facility for your loved one, work on an individual basis with the nurses who provide most of the individual care to the HD patient. Using techniques that you can learn and develop as a result of attending support group meetings and seminars, teach caregivers how to feed, clothe and communicate (both verbally and through eye signals) with your loved one. Be patient and encourage staff members, reassuring them that your loved one cannot control his or her angry outbursts, dementia, movements and other aspects of this disease.
It is helpful to remember that many staff members have never seen an HD patient and are unfamiliar with the sudden jerky movements and mood changes. Encourage the staff to talk to the HD patient even though the patient may not speak. In some instances, it appears that some physicians tend to over medicate. Discuss with the physician the medications and dosages and try to agree on the medication levels that help the patient to maintain a balance and not over medicate.
It can be difficult to locate a facility that is suitable to you and your loved one's individual situation. There are negatives and positives about all facilities. There are no perfect facilities, but as more research and awareness become available, I feel that things will get better. Hang in there and let us continue to race for a cure for HD.
(Information below from a pamphlet from Four Seasons Retirement Center in Columbus, IN)
Not all facilities participate in Medicare and Medicaid, so if one of these programs covers you or the person you are helping, it is important to verify that the facility you have in mind is certified to receive that type of payment. Medicare is the federal government program for persons age 65 and over that pays for a limited period of time in a nursing facility after certain types of hospital stays; Medicaid, a program funded jointly by the state and federal governments and administered by the state, pays for extended care for persons who meet eligibility requirements tied to income and assets.
Similarly, a growing number of managed care plans, like HMOs, have payment contracts with particular long-term care facilities. It is worth asking about this, as well.
Do the residents appear comfortable and well cared for? Are they appropriately dressed and well groomed?
Do the facility's employees seem knowledgeable and well organized in the tasks they are performing? Are they courteous and attentive to the residents (for example, knowing and using a resident's name, and knocking before entering a resident's room)? Are they wearing name tags to let residents and visitors know who they are? Are they groomed appropriately? Do they seem happy and engaged in what they are doing?
Are the residents' rooms clean and comfortable? Do lighting, ventilation, and space seem adequate? Are the bathrooms equipped with non-skid surfaces and grab bars? If rooms are shared by two or more people, is privacy respected as much as possible?
What is the dining room like as a meal is being served? Do things seem calm and organized? Is the food appealing? Is it served hot?
Does the facility offer a variety of activities and outings? Does it keep residents informed and personally active as much as possible? Are calendars, posters, and photographs displayed?
Is the facility well maintained? Are there walkways or a courtyard for outdoor visits in good weather? Do stairways and hallways have safety rails?
Does your regular doctor see patients at this facility? If not, which doctors do?
What sort of written contract does the facility ask new residents to sign? Ask to see a copy.
What are the opportunities for family involvement? Find out about visits, availability of support groups, and participation in care conferences and care planning.
All long-term care facilities are regularly inspected ("surveyed") as part of their license renewal or in conjunction with their certification as a participant in Medicare or Medicaid. The results of the state's most recent survey are always available for you to look over. Were there any major problems? You can check out a nursing home's latest state licensing survey at: http://www.medicare.gov/nursing/home.asp
What does the facility ask of each resident...what are it's "rules and regulations"? What is the policy on smoking? On loud noise? On protection of resident belongings?
Created and maintained by Renette Davis. Send comments to Renette by clicking here.
Created: Oct. 9, 1999
Last updated: Dec. 4, 2010