Caregivers Check List Part I and Part II

Today I received five “asking for money” letters.  I’m on the list for melanoma because I sent a donation when my cousin died from the disease.  I also gave money for research for amyotrophic lateral sclerosis or ALS because another cousin is dying from that disease.

If I thought to be bothered by all the solicitation, I abruptly stopped and said prayers for my strong, amazing cousins, but also for their caregivers.

The care-giving for Jenny: the visits to the doctors, the agony during chemo-therapy, the last moments with hospice and then her husband’s death—is over.  For Mary it inexorably continues and will be an inevitable struggle to do everything she can for her husband as he loses the ability to eat, talk and eventually breathe.  He is suffering.  But so is she.

The desire to do everything for the loved one who is ill is most often spontaneous and immediate.  Incredible strength usually flows through the person when the husband or mother or child’s diagnosis is first made:

I will do everything I can to help this person get well; I am strong; I can do this even if I have to work or raise the children or deal with the household chores and bills at the same time.  I can do this. I can.  Watch me! 

So often initial offers from friends are turned away.  The zeal to keep things normal, to keep things going within the confines of the nuclear family is strong.  And those observing from the outside talk about the special grace that this person, the caregiver, has received to do all that he or she is doing.

Bottom line to all of this: the zeal, the energy, the very foundation of the resolve will go away, will fall apart.  No one is superhuman.  One day the caregiver awakens and can hardly face what she has to do.  She’s exhausted, saddened by the way life has changed for her.  She might even feel resentful and depressed.  And it’s inevitable that the ill person will notice the change.  More stress and angst to deal with.

At this point, the caregiver might long to go back and solicit the help he at first kindly refused.  Well he should, he must.  Help is often just a phone call away.

Let’s learn from this RIGHT NOW.  For us boomers, those of us in the sandwich generation, the time will come when we have to be caregivers for our parents or a dear friend or sadly, our spouse or maybe even one of our children.  Its’ highly possible that some of you reading this are already there—right now.  It’s unwise to be a hero.  You spend your own health in the process and then where are you?

It would be better in the long run, and you often don’t know how long that its, to resolve to do the following:

  • After the initial shock of the diagnosis, give yourself time to adjust to a new schedule; (depending on the diagnosis you might have a month you might have a day–some cancers have to be treated ASAP)
  • Don’t quit your job, if you work, but try to get a few weeks off to get organized;
  • Accept any help offered to you, even if it’s the kid across the street who wants to walk your dog;
  • Let go of the tight controls you have on everything in your life;
  • Select only those things which you feel you can keep a tight control on;
  • Talk to your own doctor about how to stay healthy during this stressful time;
  • Set up a schedule with those who have offered to help so that you can get a good night’s sleep at least 3 nights a week;
  • Accept meals, offers to drive your children to school, to drive your loved one to the hospital for chemo, to clean your house—whatever;
  • If you discover that you would rather continue to work at your job and hire someone to do the caregiving for the loved one who is ill, hire people who can do just that; (please see below)
  • If you cannot afford to hire anyone to assist you, check into federally funded programs that offer respite care for caregivers;

In the angst of the diagnosis and the turmoil of life you have been thrust into, try to find one hour those first days to sit down and THINK.  Plan.  Prepare.

Bottom line: if you can take care of yourself while your husband is having chemo or your wife is having a mastectomy and radiation or your uncle is dying of ALS, everyone will be better off.  You become the center of this storm—and you have to seek help to survive it.

Remember: take care of your loved one and also yourself!

Caregivers Check List Part II

www.caring.com

Founded in 2007, Caring.com aims to provide information to persons seeking support for aging parents, spouses, and other loved ones. Their mission: to help the helpers:More then 40 million people in the United States care for someone over age 50, yet most have little preparation or experience when they begin their caregiving journey. We provide thousands of original articles, helpful tools, a comprehensive local directory of caregiving services, and the collective wisdom of an involved community. Our content includes advice from a team of more than 50 trusted leaders in geriatric medicine, law, finance, housing, and other key areas of healthcare and eldercare.

This site’s home page provides links for finding housing, home care, legal help, medical information about dementia and related diseases, and general senior health and living information.

http://www.alz.org/apps/findus.asp

This site offers a map of the United States where one can find local chapters of the Alzheimer’s Association.  The Association provides supportive programs and services to help people with the disease and their caregivers.  Each chapter offers five core services: information and referral; care consultation; support groups; safety services, and education. There is a 24/7 Helpline for local referrals.  This site is a good place to start if one suddenly has to help a relative or friend with Alzheimer’s or dementia.

http://www.mayoclinic.com/health/dementia/DS01131

The Mayo Clinic provides a definition of dementia:

Dementia isn’t a specific disease. Instead, it describes a group of symptoms affecting intellectual and social abilities severely enough to interfere with daily functioning. It’s caused by conditions or changes in the brain. Different types of dementia exist, depending on the cause. Alzheimer’s disease is the most common type.

Memory loss generally occurs in dementia, but memory loss alone doesn’t mean you have dementia. Dementia indicates problems with at least two brain functions, such as memory loss along with impaired judgment or language. Dementia can make you confused and unable to remember people and names. You may also experience changes in personality and social behavior. However, some causes of dementia are treatable and even reversible.

This definition leads into a discussion of symptoms, causes, risk factors. and complications.  The Mayo site is easy to navigate and the language accessible and readable.

2 thoughts on “Caregivers Check List Part I and Part II

  1. Elizabeth,

    Such great practical and actionable advice!

    I have spoken to our local caregiver’s group about the importance of transforming one’s own stress in order to have the energy and strength to continue on caregiving. One of the biggest concerns posed to me by the group was that they felt they couldn’t justify looking after themselves when the person they loved was suffering.

    I reminded them about T.O.T.O.M. The Theory of the Oxygen Mask – the message that you get on the plane before take-off. Practising in-the-moment stress transformation techniques will help them help in their caregiving role by allowing them to remain healthy and strong.

    I live with rheumatoid arthritis, so from time-to-time, I’ve needed extra help, either because of one of a flare-up, surgeries or because of a situation such as this: (http://changeofheartstresssolutions.blogspot.com/2009/07/lessons-of-fall-continued.html .

    I’ve also been in the position of caregiving.

    It is crucial to accept the help on offer. It is equally crucial to take some time to restore, rejuvenate and revitalise oneself, even if it’s for 5 minutes at a time.

    “Letting go of the tight controls on everything on your life,” is a powerful message. One that bears repeating and practising.

  2. Marianna: I love your reference to TOTOM and though I have never heard it expressed that way, it makes perfect sense. I too have had some health problems in the past and know how important it is to have help with just the daily stuff (my kids were little). I think the greatest challenge is sometimes the mental one–as your group mentioned–they feel guilty when they take time for themselves and are not with the one who is ill. It’s all a matter of balance. Life is a matter of balance. Thanks for your comments. Beth

Comments are closed.