Introduction 2015:
More than 15 years ago our family was forced by circumstance to come to a decision point. My husband's mother had become too frail to live alone any longer (Dad passed on many years previous) and something had to be done. Our situation was a bit unique in that Mom was a U.S. citizen and we are naturalized Canadians. Assisted care and Nursing Homes in Canada were not an option. Elder care places in the States were very expensive and not that impressive. So our solution was home-care, 6 months in Canada with us, 6 months in the States with my husband's sister. This was a viable (and acceptable to Mom) solution for several years until Mom's dementia took a toll on both our families.
Many of my friends have now come to this point in their lives and are dealing with similar issues. Some, whose parents needs are minimal, have arranged for home-care services. Others have parents residing in assisted living facilities. The parents either chose to do this or a crisis point was reached and a place had to be found. (The process of finding an available, affordable, and satisfactory care-home for a parent can be daunting in itself.) Assisted living facilities, which graduate to meet the changing needs of residents, are a common and probably less stressful solution for both generations. I clearly remember how important it was to Mom that she was not a burden, how often we had to reassure her on this point. It is likely that care-homes alleviate these feelings but other emotions may come into play - abandonment, loneliness, helplessness, loss of independence, confusion... A care-home in a small town, where Mom or Dad already know many of the residents, is, in my opinion, a better place than a care-home in a large city centre. Unless your parent is gregarious and makes friends easily, unless the staff is sufficient in number and has empathy for the residents, they can end up lonely in a crowd. But we do what we can do, choices are often quite limited.
When parents are in care-homes, hopefully at least one sibling lives nearby and can visit often as well as advocate should the need arise. This sibling will be depended on, by parents and other siblings as well, and resentment for the role thrust upon them can crop up. In some cases the sibling with the more nurturing nature, often a sister rather than a brother, is leaned on even when it is more difficult for them to "be there" for their parent. Some people's natures make them raise their hands and say, "Sorry, I just can't deal with it!" and responsibility by default lands in another sibling's lap. Siblings who live at a distance and cannot be in frequent contact are faced with different issues, both emotional and practical (feelings of loss, helplessness, guilt due to an inability to share responsibility; financial, time and travel constraints). Some people have no siblings and no choice. Every family must come up with its own solution but shared or delegated, responsibility needs to be allocated.
Watching the slow deterioration of our parents physical and mental well-being, advocating for them, being there when you are needed, is a ride on an emotional roller coaster. One day all is well, the next day it all falls apart. The grieving process mentioned in this article is no less for those whose parents dwell in assisted living facilities than it is for those caring for a parent in their own home. And, although our conscious mind tends to bury the thought, we all realize that someday ... someone ... somewhere ... we too will be in the same situation as our parents are in now. That is a scary thought. We think we can plan, can avoid the dependence of old age, but no one knows what their future will bring.
A Family Solution to a Human Problem
by Mary Lynn Tipton, 2001
Many 50 plus individuals are finding themselves thrust into the position of providing care for a frail ageing parent. Because home-care has proven to be less expensive than institutional care, and because facilities for the elderly (assisted living units, nursing homes) have growing waiting lists, there is a push being felt these days to care for these individuals at home.
Eldercare in the home is a family solution to a human problem. While your parent's physical and mental health is still fairly good, you may take comfort in the knowledge that you are providing a secure and loving home for him (or her) while solving problems relating to security, transportation, forgetfulness and loneliness. You and your parent may develop a rewarding relationship as adults, based on sincere friendship; and your parent may appreciate your support.
But no solution is ever perfect. As your parent's physical and mental condition worsens, the role of caregiver can become exceedingly restrictive. Living with an elderly person can put a severe strain on your emotions, your privacy, your time, and your other family members.
Providing a safe environment for a person with physical infirmities requires thought and research. Physical aids, as loaners from your local health services or as direct purchases, and a great deal of common sense combined with sensitivity to the individual disabilities of your parent can help you elder-proof your home. Grab bars in showers, tub transfer seats, commodes, grab bars attached to beds, elimination of throw rugs, lifts, wide steps or ramps, good lighting, adult incontinency supplies and separate thermostats can all be helpful in elder care. Each situation is individual, but you may be surprised as to how many different aids are available.
Developing a do-able routine to ensure personal cleanliness can prove to be a touchy situation. If the elder person is incontinent accidents do happen and odor can be a significant problem. The dignity of the elder person must be considered and balanced against his ability to keep his own person, clothing, room and bedding clean.
Cognitive disabilities are the greatest challenge. Living with a conversational partner who has vascular dementia or Alzheimer's disease can bring your stress level to a point of crisis. Dementia causes short term memory loss, lack of trust, anger, and inappropriate behaviors in social situations. The elder person feels out of control, confused and frustrated. The caregiver's reserves of patience are strained. Until you and your parent experience first hand the effects of short-term memory loss, you will have little understanding of how incredibly frustrating this disability can be. Events and conversations can be forgotten almost immediately. Constant repetition becomes the norm and hurt feelings are common. (A point to remember - when mental capacity begins to decrease it is wise to obtain power of attorney in matters of health and finance.)
Living with a frail elderly person can put you on an emotional roller coaster. Nothing is static or predictable. Every time things seem to stabilize something new crops up. Frailty, chronic illness, and dementia initiate the grieving process (denial, bargaining, blaming, anger, depression and acceptance). You lose your parent a piece at a time; witness his slow deterioration; watch while his personality and physical well being goes through so much change that he almost becomes a new person, sometimes a person you don't particularly like. With each setback you may find yourself starting this grieving process anew. Grieving is a normal, intense emotion. Until the finality of death it cannot be resolved.
You will be amazed at the inner strength you are able to summon as each change in your parent's condition occurs. But feelings of isolation, because others, often unconsciously, may allow you to bear the burden of care on your own, can cause serious problems. Do not allow yourself to become a martyr. Get help when you need it. Your own health depends on it.
There are numerous books a caregiver can read, books written by people who know what you are going through. One such book is "Mother, I'm Doing the Best That I Can"* by Len Fabiano. A few stress relieving suggestions from Mr. Fabiano's book are: 1) join a support group, 2) find a confidant with whom you can share your emotional reactions, 3) become informed by reading and asking questions, 4) take time for yourself, and 5) make use of respite care.
Following any or all of these suggestions will ease your stress for a time. As your parent's condition deteriorates you must learn to assess your stress level and, as the need arises, ask for the help and support of others. The most effective stress reliever of all, in my opinion, is respite care. Taking a break from your routine by having a home-care worker come to your home or by taking your parent to an adult day care program can make a nearly impossible situation tolerable.
The decision to care for your parent at home should be made with your eyes and your heart wide open. Personality and lifestyle conflicts, finances, availability of other options, and the wishes of your parent balanced against an honest assessment of his mental and physical abilities and disabilities must be considered. Home-care may be the best solution, but it could be temporary. The time may come when you must pass on the duties of care to a nursing home. You, as the primary caregiver, will know when and if this option must be considered.
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*Fabiano, Len (1991). "Mother, I'm Doing the Best That I Can. Seagrave, Ontario: Education and Consulting Service (ECS).
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