My father, who lives with us, was just recently diagnosed with Alzheimer’s disease. We don’t know how to plan for his care or what we can expect as his condition worsens. We have heard horror stories from friends who have had relatives with this devastating disease. Where do we start?
With the economy the way it is, more families are caring for Alzheimer stricken loved ones at home. With the monthly cost for an Alzheimer facility running $5,000 to $10,000 each month, there often is no other option. Now is the time to develop a plan for his care while he can still participate. Things to consider:
Financial aspects: Get all his financial and legal documents together, including: his will, medical and durable powers of attorney, deeds, mortgage papers, bank accounts, pension and other retirement documents, life insurance and health insurance policies, social security info, stock and bond certificates and any documentation about his monthly and outstanding bills.
Resources to tap: While the costs can be high, there are resources you can turn to including Medicare, disability insurance, long-term care insurance, life insurance, Social Security Disability Income, Supplemental Security Income and Medicaid. The Alzheimer’s Association website alz.org describes these different financial resources, as well as just about everything else you need to know as a caregiver for a patient with Alzheimer’s.
Tax Deductions: This site also has lists a number of deductions caregivers take for medical/nursing care, transportation, home modifications, etc.
Also, be sure to put safeguards in for yourself. You can not take care of your dad 24/7 – you will need help. Eldercare.gov is a great resource for finding quality local care providers. Also seek out local and on-line support groups. They can offer invaluable advice.
Receiving a diagnosis of Alzheimer’s or a related dementia for your loved one can be devastating. The second biggest challenge? Adapting your home to best care for the needs of your loved one overwhelms many caregivers after leaving the doctor’s office.
Here’s the good news: there is a wealth of information and resources out there that are easily accessible. That being said, what you need to remember above all is that flexibility is the key to success. No matter how many books you read or checklists you follow, your loved one’s care needs will change, or his needs might be so unique that you must create alternative solutions other than those suggested. Buying an expensive, high tech gadget to assist your loved one with daily tasks may not always be the best option – in fact, the gadget itself could present more hazard than help. Alzheimer’s does not fit in a box, so any resources you consult may have to be adapted to fit your care recipient’s unique situation.
Caregivers must begin to look at the home in a brand new light. What hazards exist that could be easily removed? What environmental features should be brought in to foster independence while maintaining safety? And, perhaps the most complicated question is, simply, where does one begin?
An understanding of the changes that can affect the person with dementia is helpful to provide a firm foundation. According to the Alzheimer’s Association, there are five key changes that will occur throughout the disease process:
• Judgment: forgetting how to use household appliances, etc.
• Sense of time and place: getting lost on one’s own street; being unable to recognize or find areas in the home
• Behavior: the care recipient will become easily confused, suspicious or fearful
• Physical ability: the person with dementia may have trouble with balance; depending upon a walker or wheelchair to get around
• Senses: changes in vision, hearing, sensitivity to temperatures or depth perception
Clearly, these changes underscore the importance of flexibility. Some persons with dementia may experience all of these changes at once, others may never have a change in behavior, but may have a drastic drop in physical ability. Some may only experience moderate changes in these areas but these changes may occur over a longer period of time. There is no timeline for these transformations, making the challenge of adapting the home all the more difficult.
* Taking Care of You *
Before diving in to the seemingly endless stack of literature or ordering a plethora of items from suppliers of creative home aids like The Alzheimer’s Store, caregivers must recognize the crucial need for respite. If the caregiver is not aware of his own needs or pushes those needs aside, both the caregiver and the care recipient will be at risk. Caregiver burnout is often unseen, but it is all too common. It won’t matter how many non-skid rugs are placed or how many door alarms are installed if the caregiver is not able to meet the care recipient’s needs. In many cases, the caregiver may have health needs of her own and could also benefit from a safer, more streamlined environment.
Keep a positive outlook as you adjust your home. Remember, it is still your castle, but making certain adjustments for the care recipient may even make the lives of other household members easier, too. Involve all members of the family in this process. Children, grandchildren, or other inhabitants may offer valuable insights that might otherwise go unnoticed. It will also ensure that when their help is needed (and it certainly will be needed), all household members have been included in the decision-making process and are part of the action plan.
While caregivers encourage independence and safety for the care recipient, they must do the same for themselves. There is rarely a timeframe accompanying a diagnosis of dementia or Alzheimer’s, so you may be in it for the long haul. The person with dementia may live at home for five years or 15 years. The care recipient may remain in the early stages longer than the end stage, or vice versa. You have to learn to accept what comes each day and deal with new developments as they arise. For many, enlisting the services of a home care provider is essential to helping accommodate the growing needs of your loved one. (I like the home care search offered here: http://www.boomerater.com/senior-living/search-for-senior-housing).
As you carry this burden, an extensive support system of family, friends, and neighbors is absolutely crucial. As the challenges of caregiving intensify, the caregiver will need the support of their surrounding community to prevent isolation or depression. In addition, if the diagnosed individual wanders away from the home, neighbors will be aware and could assist in times of need. We have all heard the expression “it takes a village,” and it could not be truer in the case of caring for a loved one with Alzheimer’s or dementia.
My family has been dealing with Alzheimer's for generations, and the best thing I can tell you is to get a good caregiver with Alzheimer's training because you need to have time to take care of yourself, too. And have patience as the disease progresses and your dad's mental age regresses - you have to know not to take some things he says personally. It's a horrible thing to have to deal with, but with the right help, you'll be ok.