I’m sure you can think of many times when you have been put in a position where you felt you had been relegated to the “back seat” ~ “the end of the line” ~ “playing second fiddle.”  We find ourselves in circumstances, that we have no control over, that place us in positions that we don’t like, we are uncomfortable with, make us angry or we feel we have been ignored or taken advantage of.  It happens to all of us at one time or another.  It’s part of life. 

Caregivers of Alzheimer’s and dementia patients find themselves in these positions, not just frequently, but many times daily. Their place in life has changed dramatically, not for a short period of time, but for many years to come.  The thought of this happening can be daunting and overwhelming to a caregiver.

I recently had a message from a caregiver whose wife has Alzheimer’s disease.  He was sharing that he wished people would just ask him how he was doing…that it would be nice to hear from family and friends that he was doing a good job.

Conversations with doctors, friends, professional caregivers, nurses and family concentrate on the patient, seldom the caregiver.  Seldom do we give the caregiver an opportunity to express what is happening to them.  What are they feeling?  How sad or lonely or angry or confused or overwhelmed are they?  The caregiver carries a very heavy burden.  It’s the caregiver who now needs to make all decisions… who needs to take the car keys away… who needs to consider selling the family home to pay for residential placement expenses… who needs to turn over to someone else the care of a loved one…who needs to go to the hospital because Mom wandered away and the police found her…who can’t sleep at night because Dad’s internal clock has changed and he thinks he needs to eat dinner at 2:00 am…who is interrupted 10 times a day at work with phone calls.

CAREGIVERS…you need to share your burden, your needs and concerns, with others who will listen and have an understanding of what you are going through.  It could be a friend, a family member, your clergy person, at a support group meeting or with a counselor.  Your needs are as great as your loved one’s – just different. The book The 36 Hour Day by Rabins and Mace is named that because no day feels like 24 hours.  Each day is long, hard and seems endless.

FRIENDS – FAMILY…don’t forget to ask each other how things are going and what can you do to help each other or the primary care giver.  Can you do laundry, prepare a meal, get groceries, invite the caregiver to go to lunch or a movie, go for a quiet walk together, go to the post office, sit with the patient so the caregiver can take a nap, etc.?  Many times it’s the little things that can make such a tremendous difference in a caregiver’s life. It is not unusual for the caregiver to become seriously ill or die, prior to the Alzheimer’s patient, because of the stress and pressure that the caregiver has been experiencing. 

Family members are a team who may not all agree on things in life.  But when it comes to dealing with this disease, the team must rally in the best interest of the patient and all caregivers involved. The burden of caregiving needs to be shared by as many people in the family as possible.

Photo Credit: CBS

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