Tips for Caregivers

[okarol]

Tips for Caregivers

Whether you choose to be a family caregiver or the job is thrust upon you by circumstances, your most important responsibility beyond caring for your relative is taking care of yourself.

Too often, family caregivers are reluctant to “abandon” their patients, even temporarily, or entrust others with their care. But a caregiver should not feel guilty about looking out for No. 1.

Self-care is not a selfish act. It’s an essential act, because a caregiver who burns out, who becomes overly stressed, exhausted or ill, is no help to anyone. There are many ways for caregivers to protect their physical and emotional health, and a growing number of organizations that can help. Sometimes all you need to do is ask

Avoiding Burnout

While people who work for a living typically get lunch breaks, coffee breaks and weeks of vacation, a family caregiver has no such respite built into the job. Yet it would take a superhuman to meet the demands of caregiving 24 hours a day for any length of time without breaking down.

Here are some ways to protect against caregiver burnout, including suggestions by groups like Strength for Caring and the Family Caregiver Alliance:

~ Arrange for an evening or afternoon out one or more times a week. Ask a relative or friend to fill in for you. If you have a cellphone, you can always be reached if a problem arises that requires your know-how.

~ If it is very difficult to get out, invite people over to talk, knit, crochet, have tea, cook, play bridge, work on a jigsaw puzzle, read a play, discuss a book — anything you might enjoy that can be done at home.

~ Pamper yourself by taking time to relax for a small part of every day. Take a warm bath, read a good book, watch a favorite program.

~ If there is someone who can take over as caregiver for a longer period, or if you can afford to hire a respite worker, arrange a weekend or week away occasionally.

~ Factor regular exercise into your caregiving responsibilities to help maintain your physical and mental stamina. If you cannot leave the house to exercise, buy, borrow or rent indoor exercise equipment or get exercise videos and work out in front of the television.

~ Eat regular, nutritious meals. Groceries and restaurant meals can be ordered by phone and delivered to your door. Prepare large recipes of favorite dishes that can be frozen in individual portions and reheated. Think main-dish soups and stews. Consider asking friends, neighbors or nearby relatives to each supply a meal a week or, if there are enough cooks in the vicinity, a meal a month.

~ Keep wholesome snacks and drinks on hand, like fresh and dried fruit, yogurt, nuts and nut butters, cut-up vegetables, low-fat cheese, hummus, fruit and vegetable juices and herbal teas.

~ Don’t cheat on your sleep. If the person you care for awakens you or keeps you up during the night, be sure to take naps when the patient does. If anxiety disrupts your sleep, ask your doctor about medication that can help you get the rest you need. Or try an over-the-counter remedy like melatonin or valerian or a glass of warm milk before bed.

~ Don’t neglect your own health care, including flu shots, dental checkups and cleanings, mammograms and routine physicals. If you have trouble remembering to take your own medications and supplements, use a Monday-through-Sunday pill container or a daily checklist. Don’t postpone a doctor visit if you develop a worrisome symptom.

~ Heed the signs of depression. Take it seriously if you become unduly irritable; cry over minor upsets or nothing at all; feel overwhelmed or helpless; lose your appetite; cease enjoying things that used to give you pleasure; or find yourself sleeping too little or too much. Sometimes just talking things over with a trusted friend or someone who has also been a caregiver can bring relief. But don’t be afraid to seek professional counseling.

~ Consider joining a caregiver support group. If there is none in your area or you are unable to get out to one, try an online support group. Nearly every problem you might encounter as a caregiver has been experienced and solved by others. You should not have to reinvent the wheel. A Web search for “caregiver support group” will lead to links to organizations like the National Family Caregivers Association (www.nfcacares.org) and its Community Action Network (www.thefamilycaregiver.org), and the Family Caregiver Alliance and its online support group (www.caregiver.org).

Finding Outside Help

As with any task, being prepared for the unexpected as a family caregiver can go a long way toward success. You don’t want to find yourself like Mrs. R., who cared for her dying husband but was never told what to do if a problem or troubling symptom arose.

Start by asking the patient’s doctors and nurses for guidance about the expected course of the illness or injury and what resources will help you cope. Ask what medical and practical devices might be helpful — a special toilet seat or commode, for example, or a wheelchair, ramp, hospital bed or feeding equipment.

Inquire, too, about community-provided transportation, like New York’s Access-a-Ride, that can provide free or low-cost door-to-door service to and from medical appointments.

Ask friends and neighbors for help with tasks like household chores, home repairs and paying bills. Make a list of everything that needs to be done and when, and match tasks that can be farmed out with people capable of doing them.

A neighbor might be willing to take out your garbage or bundle your recycling. Another parent might be able to take your children or grandchildren to school and pick them up after school. Perhaps a relative or friend with woodworking expertise could build a ramp for the patient’s wheelchair. Most people are happy to help those in need, so don’t be shy about asking and don’t refuse help when it is offered.

Another approach to helping family caregivers was pioneered by a group called Lotsa Helping Hands (www.lotsahelpinghands.com). In partnership with dozens of national nonprofit organizations, this group provides a free service for family caregivers by bringing together community members who can help with meals, rides, errands, childcare and other activities of daily living, Barry Katz, its co-founder and president, wrote in “Voices of Caregiving,” a new book by The Healing Project.

You might also consult one or more of the many helpful books on caregiving that have been published in recent years, including the American Medical Association Guide to Home Caregiving (John Wiley & Sons, 2001).

[willieandwinnie]

Oh Lord okarol, if that was only possible. 

[okarol]

LOL
I know. I try to take care of myself, but it was hard when Jenna was on dialysis.

[Yvonne]

Thank you for such an interesting article and I hope many people will read it and take note. But John my husband said he knows this life is getting to me as I am now so irritable and weepy. He won't go out but tells me to go on my own(no fun) If the family comes to see us for more than a day he moans and keeps asking me when they are leaving. Here in the UK the doctor will not discuss with me John's health unless he is with me. I think John thinks he has not long to live and therefore He should have all the attention he needs from me. I keep telling him he could be quite active and do more things if only he would put his mind to it.  As I think I know he has many more years left in him else the doctors would not have spent all that money that his operations must of cost thousands of pounds, and still on going with all his medication. Sorry for the rant again
  Yvonne

[monrein]

Yvonne, I know that it's hard to think of going out by yourself and leaving John but I agree with him that you need to.  Even a couple of hours at a movie or lunch with a friend.  If the family visits, do little excursions.  If John doesn't go, you go anyway.  You do have to get your needs met too.

I really encourage my husband to do things without me , even go to the cottage for a couple of days to not have me and dialysis on the brain.  This illness sucks but please don't let it take both of you down with it.  Please remember that caregivers can succumb to depression too and you need to be having regular bouts of fun to keep your sanity.  You'll also feel more able to give John attention without building resentment.   
  (For John)

[okarol]

My husband has been disabled for 10 years. I had the kids and stayed home so I really never had time for myself. Then when Jenna got sick my stress level became almost unbearable. Eventually, with the help of a couple really great girlfriends I started doing more on my own or with them. I have been fortunate that I could hire a babysitter once in awhile. Even if Ed was alone with the kids, I'd have a rent-a-nanny come in to cover while I was shopping or having a pedicure or lunch. Then came Jenna's transplant, a wonderful and at the same time stressful event! I really needed more mental breaks but was feeling so much responsibility that I could barely allow myself any freedom. Being in La Jolla, just the two of us, going to the clinic appointments and watching her for any sign of problems, I was probably obsessed. I got little excercise, not enough sleep, and put all my energy into her care and well being. I am so grateful I could do that. But the next few months of her recovery made me realize that I needed to start taking better care of myself. She was getting better and I was a little lost, feelings of loneliness that I pushed away for a long time came up more, this kind of blindsided me. I guess because for the first time in a long time I wasn't needed as much as before. That was great, don't get me wrong, but I wasn't really prepared for it. You get accustomed to what your role is, and then you look at yourself and say, what the heck have you been doing all this time? I started walking 3 days a week with a friend, started eating better, and made an effort to get more sleep. I know how fortunate we are that Jenna was one of the lucky ones who had a very successful transplant with no glitches. And i also know that I need to stay busy. IHD helps me there. And my girlfriends still pull me out of the house. Thank God for them. Ok that was a long paragraph. LOL I guess I needed to get it all out.

[Kitty Cat]

Hi okarol!!

Thank you so very much for the reminder. I know what I should be doing, but actually doing is way different. I'm going to print this up so that when I am feeling stressed I can use it as a reminder and even if need be, just take some time and cross stitch. I've been reading like crazy lately and my hubby feels a little rejected because I'm not spending all my time with him when I come home from work, but as you know from my posts, since I have no family support I am taking some breathing room while things are good. Thank you so much, I hope all is really well for Jenna and your family. Also have a wonderful Thanksgiving Day.

[pelagia]

CKD: The Burden on the Caregiver
By Anna Bennett
http://www.billpeckham.com/from_the_sharp_end_of_the/2008/12/pbs-video-kidney-disease-the-burden-on-the-caregiver.html

In my last post, I posted a clip from PBS Second Opinion Stat!: Kidney Disease, and while going through the related website to the episode, I came across some key points, the first being:

In management of a chronic disease, the burden on the caregiver is great, and there are physical and emotional costs to the caregiver.  The patient is not the only one who needs to be watched and taken care of.

Even though the majority of people in CKD5 have a caregiver, the role of caregiver does not get much ink here on SEON, Bill and I are solo dialyzors, (ok, so now I am a former solo dialyzor - I've actually started calling myself a monourinator).  Bill experienced being a caregiver this summer when his mother was ill, and it was an eye opening experience for him.  Peter is married and currently incenter, and Mel was dialysing at home with her husband, (now Husband/Donor) Andy.

When you love someone who is ill, you too are suffering - it is the nature of human attachment.  This excerpt from Key Point 1 is a great reminder that you need to be a caregiver to yourself as well as the person that you love:

The energies of the caregiver can become totally absorbed by their loved one's illness.  Many caregivers try to provide care single-handedly and end up neglecting their own needs. It's not uncommon for them to think that their life has to come second to the needs of their loved one.  Yet, in additional to an overwhelming volume of things to be done, they also have to come to terms with the sacrifices they're making –  the loss of the fullness of their personal relationship with the ill person plus the life choices they are no longer free to make – and their own emotions.  Family members feel the same shock, fear, anger, sadness and loss as the person who is ill.  They are the witnesses to their loved ones' physical and emotional deterioration. 

Chronic stress without relief can lead to both physical and emotional problems.  Research shows that caregivers:

Are more likely to be have symptoms of depression or anxiety
Are more likely to have a long-term medical problem, such as heart disease, cancer, diabetes, or arthritis
Have higher levels of stress hormones
Spend more days sick with an infectious disease
Have a weaker immune response to the influenza (flu) vaccine
Have slower wound healing
Have higher levels of obesity
May be at higher risk for mental decline, including problems with memory and ability to concentrate
A study of caregivers published in a 1999 issue of the Journal of the American Medical Association reported that elderly spousal caregivers (aged 66-96) who experience caregiving-related stress have a 63% higher mortality rate than non-caregivers of the same age.

The irony is that the well-being of the patient depends on the well-being of the caregiver.   By neglecting themselves, caregivers put their loved one in danger of losing their most important support person.  To evaluate your level of caregiving stress, take a simple test from the PBS Caregiver's Handbook (part of the web site for the 90-minute program Caring for Your Parents).  Go to Caregiver Self-Assessment Questionnaire (PDF).

So, let's take a moment for the caregivers, even though they do not physically feel the pain of the needle sliding into the access, or the wave of nausea when suddenly your body reminds you that something is not right, We, the dialyzors can't feel their pain of being helpless while someone they love is being kept alive by a machine.

(you'll have to go to the link above to get to the secondary links in the article, including the questionnaire)

[monrein]

"So, let's take a moment for the caregivers, even though they do not physically feel the pain of the needle sliding into the access, or the wave of nausea when suddenly your body reminds you that something is not right, We, the dialyzors can't feel their pain of being helpless while someone they love is being kept alive by a machine."


This sentence really hits the nail on the head for me.

[del]

So true monrein!!  I am a partner to my husband not really a care giver in the true since if the word as he is quite able to take care of himself. I often feel like I wish I could do dialysis for him some nights just to give him a break.  he is not sick often but when he is I feel like I would like to be the one feeling sick instead of him.  We have known about his kidney failure for over 20 years and he has been on dialysis for over 11 years.  We have been married for 23 years so most of our life together has been dealing with kidney failure.  I have been the one to support him through those years. Very little family support ( he only has one sister) and she is always saying that he is sick and he isn't.  It makes me so mad!!!  She didn't want him to do nocturnal and tried to talk him out of it as did his mother!!  We have faced this disease together and it has just become a routine part of our life.  It has really made us appreciate life more and to live for the moment!!