The Agony of Isolation and Family Caregiving:An AlzheimerƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s tragedy
Posted on February 16th, 2012

Ethelle G. Lord, DM Professional AlzheimerƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s Coach

The pain of isolation for the family caregiver increases exponentially as AlzheimerƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s advances. On a scale of one to ten, ten being the highest, isolation must be at the top of the list.ƒÆ’-¡  As a woman once wrote and providing care for her aging father, ƒÆ’‚¢ƒ¢-¡‚¬ƒ…-With Easter tomorrow IƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢m feeling forgotten by people around me and itƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s making me feel blueƒÆ’‚¢ƒ¢-¡‚¬. It is estimated that millions of baby boomers with be diagnosed with AlzheimerƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s within the next decade. For every one diagnosed with AlzheimerƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s, a primary family caregiver is becoming responsible for an average of four to six years, and perhaps as long as 20 years, after the diagnosis of AlzheimerƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s according to the AlzheimerƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s Association (http://www.alz.org/news_and_events_generation_alz.asp).

When I became a family caregiver for my husband 10 years ago, I was focusing on creating systems to provide the best care possible, safety was top of my to-do list and living two lives at once (taking care of all his needs, thoughts and feelings along with mine) required a shift in perspective. By the time I felt established as a family caregiver, I noticed everyone around me had disappeared, my social activities were non-existent because there was no time after devoting 24/7 to my husband, and I was feeling extremely isolated in this world ~ not even able to share thoughts and feelings with my husband for fear of confusing him even more.

Words that come to mind when pondering on this feeling of isolation are: sadness, mourning, loss, fear, and despair. Although I have a background as a mental health counselor and know the importance of combatting isolation, it became obvious to me that devoting 24/7 on family caregiving duties and responsibilities became overwhelming for me. Such a schedule did not leave any room for reaching out and getting in touch with others. There was no energy or desire for engaging in activities outside my home. I was simply physically and emotionally exhausted, and the expression ƒÆ’‚¢ƒ¢-¡‚¬ƒ…-canƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢t see the forest for the treesƒÆ’‚¢ƒ¢-¡‚¬ seems fitting.

What I found most helpful was an occasional visit from my sister and her husband who were able to see physical and emotional changes in me because they know me well. My sister did not hesitate to ƒÆ’‚¢ƒ¢-¡‚¬ƒ…-dragƒÆ’‚¢ƒ¢-¡‚¬ me to a restaurant when I was having a professional caregiver for a few hours for respite. She also did not hesitate to let me know when it was time to place my husband in long-term care because he no longer was able to walk unassisted and all the lifting on him meant my own body was starting to fail me. Did you know there is research showing that an individual living at home does not live any longer than living in long-term care?

It has been almost two years since my husband moved into long-term care but I am still recovering from being a family caregiver. I must have slept at least four months, sleeping in bed or a recliner (any time of day or night) in those months. Now that I have more time and can get out and socialize, I have trouble finding avenues where I might make new friends. Creating an exercise program that benefits me has not been as easy as I thought, but IƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢m getting there. Results of this isolation includes, but is not limited to, premature aging, depression, exhaustion, high blood pressure and even despair in many family caregivers. They often feel they have been abandoned by family, friends and even their close neighbors. In reality it is often the profound emotional and physical changes in them that create such feelings, whether these feelings are real or imagined.

Possible solutions:

ƒÆ’-¡ Treat caregiving as though you were a profession and take regular breaks. Keeping a 24/7 schedule is a recipe for disaster. My advice is to find in-home help or support early after becoming a family caregiver. Start from the first day to look for that professional help and get out of the house while that individual is there with your loved one. Let family members know that you need them in your life now more than ever and visit with them more often. In order to visit relatives avail yourself of respite care in long-term care where you know there is a team of professional caregivers to cover your time away from home. Take time to pause in order to be able to ask for what you want from others.

Know the four stages a family caregiver will experience (http://www.practicalcaregiverguides.com/four-stages-of-caregiving) and actively take steps to manage each stage better:

  1. Early Stage: Basic care
  2. Middle Stage: Intermediate care
  3. Late Stage: Advanced care
  4. Bereavement Stage: End-of-life care

If you care for a parent or relative outside your home, consider moving them into your home to minimize travel time on your part. Get financial advice early in order to make proper budgetary adjustments so the financial stress is reduced and it is possible to make ends meet. On holidays and special occasions treat yourself so that you feel special. Finally, you may want to consider the services of a professional AlzheimerƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s coach to provide the guidance and support you need through this challenging period in your life.

 

 

About the author:

Ethelle G. Lord has her Doctorate of Management in Organizational Leadership from the Universityof Phoenix(2010). Dr. Lord is an adjunct Professor of Business, author and professional AlzheimerƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s coach. She has her own coaching business at Remembering for You (dot) Com and Teamwork Coaching (dot) Com. From 1992-1996 she had a private practice in mental health counseling; in the late 80s she was a paralegal for Legal Services for the Elderly and from 1992-1996 she was a two-term President of the Maine Gerontological Society of Maine. Ethelle is married to Maj. Larry S. Potter, USAF Retired. They live in Maine. Visit us today at http://remembering4you.com and contact the author at Info@remembering4you.com.

7 Responses to “The Agony of Isolation and Family Caregiving:An AlzheimerƒÆ’‚¢ƒ¢-¡‚¬ƒ¢-¾‚¢s tragedy”

  1. LankaLover Says:

    You have to check out Coconut Oil Keytones i.e. http://www.coconutketones.com/ There are many resources on the web. In Sri Lanka and many other Coconut Oil eating countries, Alzeimer’s disease is rare.

  2. Fran Diaz Says:

    Care for the Sick & Elderly in proper surrounds is not given enough attention In Sri Lanka. Grown up children are expected to look after the Elderly Parents, relations, etc. It would be good to have Sinhala Buddhist establishments which are more in number and beter, doing this type of work, at least partly subsidised by the State. The elderly should be made to feel of use to the community too, as they can make good contributions by writing of their views to society through their long experience in life in their chosen fields of endeavor, even as a housewives or laborers. There may be experts in their fields of work without opportunities to share their knowledge.
    As for Alzheimer’s patients, I have read that bad fats & oils that cannot be easily digested by the human body can be responsible to a large extent for this disease, as fat deposits form in the brain area as well as in the arteries and other organs. Trans fats such as margarine is an example. Also, fats & oils break down under high heat to produce altered fats & oils not good for us. Ghee & Canola oil can stand fairly high cooking temperatures without breaking down fast. Butter breaks down very fast under heat.

    We have been informed that Aluminium cookware is another cause for deposits in the brain that causes diseases of the brain such as Alzheimer’s. If acidic food is cooked in Aluminium (Al) pots, the metal leaches into the food. It is alright to boil water or milk (Non acidic foods) in Al ware.

    Any fat that is altered from its natural state is now considered by health experts as not good for human consumption. Also, pelase note the Bromelain enzyme found in pineapple helps digest fat. Vinegar (pickles) helps too.

    Lanka’s own ‘sekkuwa’ produced coconut oil (cold pressed) is an excellent oil to use. If this oil is organic, it would be one of the best oils in the world.

    Also, training courses on how to look after the elderly and the sick at home would be useful, together with relaxation techniques and ways to find outlets for routine, tough work. Self Help as well as Group Help ideas for people in this would be welcome. Books, leaflets in this regard would be of real help. I think there is a fair amount of information on the web too, but the actual work of looking after the elderly & sick at home over long years needs to be looked at in depth and help given, both by society & the state.

    Do write in and correct if any of the above information is wrong.

  3. jimmy Says:

    Coconut oil is bad Fran

    you said ‘Lanka’s own ‘sekkuwa’ produced coconut oil (cold pressed) is an excellent oil to use”
    it is a wrong info you are giving
    There is cholostrol in coconut oil . Do not use coconut oil . better to avoid it if you want to live longer

    take Vitamin D and Omega Fish oil every day

    bye

  4. Fran Diaz Says:

    Hi Jimmy,

    You are incorrectly informed about coconut oil. It is the bottled, commercially sold, machine/heat extracted oil that is not good. The ‘sekkuwa’ cold pressed oil is good as no heat is applied to break down the original oil structure. If it is organic, it is even better. Organic, cold pressed coconut oil is now sold in the west as one of the best oils to use. If heated too much, even this oil will lose its good properties.
    Beware of marketing gimmicks to mislead the consumer. Also, any oil or fat in excess is not good.

    You are right about Vit.D, especially in sunless climates of winter days. Vit.D is produced naturally by the sunlight falling on the skin. In tropical countries such as Lanka, sunlight is plentiful and we need less Vit.D.
    Omega Fish oil is good too. Trouble these days is that fish are contaminated with mercury.

  5. Fran Diaz Says:

    I am told also that solvents are used in extracting oil commercially and these solvents remain in the oil. Solvents are not good for human health.
    Therefore, cold pressed organic oils are best, with little heat in cooking as possible.

  6. Fran Diaz Says:

    Talking about best diet to people who do not have money to even buy essentials is an unhappy thing to do …..

  7. jimmy Says:

    Thanks for the info on coconut oil Fran
    You are right ” cold pressed coconut oil is good “

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