Caregiver Stress

The definition of a Caregiver is one who is responsible for someone else's welfare.  When thinking of this definition one typically thinks of a parent caring for a child.  However, as the picture above depicts, often it can be a child caring for a parent, a spouse caring for a spouse, or someone caring for an individual dealing with a chronic or terminal illness. 

Often the Caregiver is overlooked because most of the focus tends to be on the individual receiving the care.  However, it is important to focus on the Caregiver as well, in order for the Caregiver to continue being an effective caregiver.  That sentence seems redundant, so let me try to explain.

The "real" definition of a Caregiver is one who keeps paperwork organized, is a medical insurance expert, a scheduler, a chauffeur, helps clean the loved one, cooks for them, gives them their medications, runs errands, pays the bills and cleans the house.  In some cases, one can add taking care of the children, and a variety of other tasks as well.  This list is definitely not inclusive of all the responsibilities that are heaped upon the Caregiver, and this list doesn't even begin to mention the emotional components of being a Caregiver.

Some of the symptoms of Caregiver Strain:

Sadness:  Caregivers often feel an intense sadness for a variety of reasons.  Typically when one is making life plans, rarely do they include caring for a spouse or parent who is suffering from a chronic or terminal illness, or the issues of old age.  It can be very upsetting for a Caregiver to see their loved one changing right before their eyes.  To see what was once a vibrant, independent, healthy person now becoming a shadow of their former self.  Also, a sadness for the dreams that were lost and can no longer have, such as retirement plans, special trips, or goals that can no longer be met.

Irritability:  Caregivers are often stretched to their limit and their tolerance becomes limited. 

Mood Swings:  Care plans can change on a daily basis, which leaves the Caregiver in an emotional see-saw situation.

Fatigue and Disruption of Sleep:  The Caregiver often does not have support in the home, so has to be available when their loved one needs them, twenty four hours a day, seven days a week.  This means that if the loved one wakes during the night, so does the Caregiver.  If the loved ones naps during the day, often a Caregiver does not have the option of doing the same because they are using that time to catch up on housework, pay bills or other errands.  It's like taking care of a baby, you have to take advantage of the quiet times to get as much done as you can.  So when does that leave time for the Caregiver to rest?  It often doesn't which leads to an overwhelming fatigue.

Disruption of Eating Patterns:  The same holds true for eating.  Often when it is meal time, the Caregiver must feed the loved one and then proceed with the post meal clean-up.  Again, Caregivers often don't have the time to eat in a healthy fashion.  The situation is often a quick grab of this or that and the food or meal choices are usually not the best.

Decrease in social activity and a feeling of isolation:  Caregivers often can not find support to give themselves a break, so they may  reject invitations to get out of the house.  Also, once the Caregiver gets out of the house, they are so consumed with worry over their loved one that they find they can not enjoy themselves, so avoid social situations altogther.  This only increases their sense of isolation as their support of friends dwindle.

Frustration, overwhelmed, anger, guilt and feeling like there is not support from family or friends:  Caregivers often find themselves overwhelmed and frustrated with their responsibilities to their loved one.  This can also lead to feelings of anger toward their loved one and family members for perceived non-support.  This vicious cycle leads to feelings of guilt for feeling angry toward the loved one.  After all, this once vibrant, independent, healthy person certainly does not want to be dependent on their loved one for all of their care. 

Typically what happens in a Caregiver Strain situation is when the loved one does die, the Caregiver finds themselves in a strange situation.  What once ruled their daily life, is now gone.  There is a sense of not knowing what to do with oneself or what direction to go.  They feel like their lives have no meaning now without being able to care for another.  In addition, their immune systems are so compromised because of the lack of sleep, the poor nutrition and the general lack of self-care, that it is not uncommon for the Caregivers to break down and succumb to illnesses of their own.  Caregivers also struggle with grief issues.  They either feel surprised at the acute feeling of grief they have, or they feel guilty for not feeling the acute grief and having a sense of relief or acceptance instead.

If you find yourself in a situation of being a Caregiver, it's important to try protect yourself and reduce your symptoms and the strain as much as possible.  Many Caregivers feel like it is a gift or an act of love to be able to provide the care to their loved ones.  You have to take care of yourself if you want to be able to provide a high level of care to your loved one.  This is easier said than done, but it is very important to try to "internalize and own" this concept. 

Here are some key concepts to consider:

1.  Caregivers often run by schedules (doctor appointments, meal times, bathing times, etc.).  Try to put yourself into the schedule.  Schedule an hour to replenish yourself.  What is important and meaningful to you?  Do you like to read, watch a special show, knit, garden, meditate, pray?  Can you find a volunteer, parish member, neighbor, friend or relative to come in for one hour in an effort to provide you with this time? 

2.  Call the Social Service agency in your community for Caregiver tips and ideas.  Often they will have "respite program" designed to give the Caregiver a break or change of scenery.

3.  Try Journaling.  People often find a great release in keeping a journal.  People have used journaling as a way to share things with their loved one, as a way to get out their own feelings about being a Caregiver, or to focus on things they can be grateful for on a daily basis (reframing your situation).

4.  Try to stick to a daily routine.  Change can be disruptive and add chaos to what can be an already overwhelming and frustrating time for the Caregiver and for the loved one.

5.  Keep a folder handy that will help to keep all your paperwork organized and easily retrievable.

6.  Incorporate exercise and proper nutrition into your daily schedule.  This will enable you to keep doing the good caregiving work you offer to your loved one. 

7.  If possible find a support group for Caregivers in your area.  There are several on-line supports available.  Here a few:

Caregivershideaway at http://groups.yahoo.com.  This chat room is designed to be a safe place to share feelings and experiences as they relate to caregivers.

 

men_support at http://groups.yahoo.com.  This chat room is designed specifically for the male caregiver.

 

Also, you can try to contact:

 

The National Family Caregiver Support Program (NFCSP).  This federally funded program provides services to help family caregivers.

 

National Eldercare Locator (800)-677-1116.  This organization can help you locate your local Office on Aging.  You can also visit www.eldercare.gov.

 

So if you find that you fit the definition of Caregiver - add caring for yourself in that definition and you can probably prevent the symptoms of Caregiver Strain and the after effects of grief.

 

Until next week, please be gentle with yourself.

 

Diana

 

P.S.  If you have found this posting or previous postings helpful, please consider making a donation to The Bereavement Center.  We are a non-profit organization that serves the community, and we operate solely on donations from families, clients and the community.  As always, your donation will be greatly appreciated and acknowledged.