The Decision Point:
Alzheimer’s Care Decisions have been confused by varied opinions along with an uncertain Dementia definition. When does an Alzheimer’s Disease patient’s decline reach a critical care decision point? Bruce’s posits this to be when a patients reaches the point where they no longer can self-sustained Activities of Daily Living (ADL) and caregiving issues magnify to where care attention 24 hours a day, 365 days a year is needed. This is the switch that changes AD care to the mental disorder syndrome of Dementia care. Different disorders take different forms but end up in need of constant care. Each mental disorder symptoms need assessment relative to the biological impact causing loss of the ability to sustain ADL. Care stakeholders face decisions. Denial of the situation is often a first decision. Lack of disease knowledge and/or realism become major detrimental contributing inputs. Apparent normal memory can be deceiving for non-AD disorders.
As seniors reach the transition point to dependent lifestyle, there are various types of institutional care facilities, such as, Assisted Living, Skilled Nursing, Memory Centers, and Continual Care Communities (CCC). Finances and health play a role if choosing a facility. Quality of Care is a variable. If affordable, a CCC offers the best value and quality care. Most CCC offer independent living along with transfer, as needed, to all levels of care under one contract, including memory care (shown here).
In Home Health Care:
In home health care is either a personal caregiver or medically trained caregiver. The difference is state certification and insurance responsibilities for medical care that is not required for personal care. 24/7 in home care is normally estimated at a cost of ten to fifteen thousand a month.
Family Member Care:
This care is probably the most common care and can either be admirable or big mess. When the decision point is reached, it is usually made by the family member that is currently providing care. This assume a realistic caregiver without decision issues. Often decision issues create family differences of opinions. Each family decision is unique. Usually, one family member has been caregiver while others (siblings, children, or previous marriages) have opinions. Bruce’s view is to realistically assess the issues relative to the patient’s current and future condition and the care needed, as well as the impact on a family member’s health if caregiver. Knowledge of the patient current mental disorder and current physical condition are often difficult to judge properly. Address each issue based on “what is the best care” for the situation and the patient. Avoid viewing the patient from your past memories
The ideal situation is a realistic spouse , with sufficient resources to decide for either Memory Center Care or In-home Health Care. There are situations with multiple marriages, pre-nuptial agreements, other stakeholder interests (business ownership, Trust documents, etc.) that can make the decision point very complex and possibly unpleasant for some.
There are situations were a patient is placed by a judge under control of the government’s social system care. The care quality in these cases is based on the placement. Other legal situations could involve divorces (especially more than one), business ownership under separate legal instruments.
My love one is not ready for Memory centers. I can be the caregiver. For many people, this becomes the only possibility due to financial situations. However, the impact on their caregiver is tremendous. For those who can afford the cost, in-home care can help. Though this may work initially, as the disease progresses and 24/7 care is needed., the cost can escalate to ten to fifteen thousand per month and far exceeding quality memory care facilities if available now and in the future as Dementia care explodes.
When an Alzheimer patient reaches the point of needing ADL support, they also reach the point where they demand continual attention. Without attention agitation, anxiety, behavior problems all surface. For other mental disorders, it may be hallucinations, paranoia, delirium, mini-strokes, aphasia, verbal abuse, tremors, etc.
Possibly portrayed as love or duty, a spouse or child doesn’t want to let go. Are they concerned for themselves or their love one? What is best and affordable? Though love is 100 % concern and dedication for your love one, the real issue is the best care for your love one, as well as, your health.
Decision Maker – at a distance from the Patient:
Often a family decision maker my reside in a different state, or city. Such decision makers without first-hand knowledge of the patient’s (possibly a love one) is relying on subjective inputs along with past memory images of the patient condition. This situation also complicates care decisions needed for ongoing care as the patient declines.
Bruce’s recommendation is to make a patient visit at a minimum of once a week. Otherwise, you need to trust and follow the recommendations of whoever has day to day caregiver responsibilities. Bruce’s love one has been in memory care for 4 years. He sees her twice a day for about a total of three hours. This is 365 days a year. The break time has provided me a lifestyle similar to when we both work.
This is playing the cards you are dealt. Bruce’s advice to caregiver’s in 2020 is to recognize that you may be the patient in 20 years. Put aside a piggy bank for the future. It can be done by finding an expense to sacrifice.
Lack of Disease Knowledge.:
Most people find themselves a caregiver when a parent, love one, or family member is diagnosed with a mental disorder. They find lacking knowledge of the disease as well as not understanding the medical terminology use to discuss the patient’s condition, symptoms, and expectations. This was my situation in 2001, when I received the news that my love one had AD.
Being retired, I choose to learn about Alzheimer’s Disease. It was learning a new language, taking courses on the Brain, Genetics, and the Human Body along with studying “The Principles of Neuroscience” and following research on the internet. This provided me with the ability to accept and manage my love one;s disease along with realistic discussion with neurologists and geriatric doctors for appropriate care decisions.
My effort and knowledge allow me the write my book “ABC’S of ALZHEIMER’S DISEASE; A SHARED REALITY by ME and MY SHADOW” along with developing my website to share AD and Dementia information.