A ringing telephone awakened my husband and I. My grandmother's steady but noticeably concerned voice on the other end of the telephone line was the clarion call announcing that the plans I'd made for my life would change forever.
My mom had moved in with my grandparents to assist my grandmother with caring for my grandfather, who had dementia. She had only been able to enjoy her retirement from a stressful job as a first line supervisor at General Motors for a couple of years when my granddad's mental health began to deteriorate. A dutiful daughter, she took on the responsibility of overseeing all of their medical care, driving them to outings, and paying their bills. She also shared housekeeping and gardening chores with my grandmother. It got to a point where Grandpa needed to be bathed, dressed, fed, he had a catheter and was completely incontinent. Without complaining, Mom shared that responsibility with Nana for several years.
Unfortunately, years of caring for others and neglecting her own health took a terrible toll on my mom, and at age 64 she suffered a stroke. The caregiver now needed to be cared for - permanently.
At the time I was raising my two girls, one a high school senior, the other just about to enter middle school; but my husband, the girls and I pitched in to help as often as possible as well. At least once a week I'd go over to bathe Grandpa and take Nana to church and out for shopping excursions.
When Mom had the stroke, I had been working as a Legal Assistant/Law Librarian in the corporate legal department of Henry Ford Health System. I had only been working there for about 18 months after finally earning a college degree in Legal Administration. Prior to that I had worked at Health Alliance Plan, a subsidiary of HFHS in various positions for years ending my tenure there as a Legal Secretary in the Corporate Legal Affairs Department. Career wise, I was finally on my way up the proverbial corporate ladder, or so I thought.
When I received my Grandmother's phone call, my husband and I rushed over to my grandparents' house. Nana had been so traumatized that it didn't occur to her to send for an ambulance, but instead called a neighbor over and she didn't think about calling EMS either - the only thing they could think to do was to call me! Mom had lost precious time which could have made a world of difference in how much damage the stroke would cause.
Now she was the one who needed to be looked after - and so did my grandparents. Mom was hospitalized, then spent several weeks in a rehabilitation facility so my husband and I were all over the place trying to keep all the balls in the air while both of us worked full time jobs. Mind you our daughter was a high school senior when all this took place and we still had the traditional senior activities and preparation for going off to college to deal with.
For the first twelve years of our marriage, Rick and I shared the good fortune of having all four of our parents and both sets of my grandparents living. During our engagement we had a heart to heart conversation about our future lives together which included how we would handle things if any of our elders ever got to a point where they could not care for themselves. We vowed to each other that we would do everything humanly and safely possible to keep our elders at home, as opposed to living in a nursing home if the time ever came. When my mom had the stroke, it was time for us to honor that vow.
After meeting with her medical discharge team we learned that when Mom came home from the rehabilitation facility, she would need a visiting nurse, occupational and physical therapy at home and of course someone to help with her custodial needs. Rick and I came to the conclusion that it just wouldn't be feasible for me to continue working. Thus, my corporate career ended abruptly.
You might have noticed that I never mentioned anything about aunts or uncles to help with my grandparents, or siblings to help me with my mom's care - that's because there are none. Mom and I are both only children. However, I'm blessed to have the most patient and helpful husband and daughters you could ask for. I also have a cousin who is around my mom's age who has helped me from time to time since the beginning of all of this. Cousin Nancy is amazing. One day I will have to write a post about her alone.
Once we got Mom home and settled, we all worked together to adjust to our new lifestyle which included keeping tabs on my grandparents as well. Grandpa passed away a little less than 2 years after Mom's stroke. My grandmother kept her house and all of her belongings in place but moved in with us. For the first few years we'd drop her off at her house in the morning and bring her back in the evening so that she could interact with her neighbors, do a little housework or tend to her garden so that she would have some semblance of privacy and independence. She was also a great help to me with Mom for years. Like Cousin Nancy, she was the most upbeat, energetic person I've ever met. It must be in their genes. (Guess I didn't inherit that gene.)
The way that my family has cared for my mom and maternal grandparents is somewhat unique and is certainly not for everyone. I do however advise anyone who has living parents or grandparents to have a series of discussions to decide what to do in the event their health requires that someone else be responsible for their care. It's also important that we acknowledge our own mortality and begin to make our own "What IF" plans then share them with your children and other affected family members. Loving, cohesive families sometimes split apart when a sudden illness occurs. Each household and family must carefully weigh the options as they know them. Understand that circumstances change, life changes - sometimes the information you receive from one phone call will change the course of your entire life.
Nana lived with us until the Lord called her from labor to reward in 2005. She was 90 years young.
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| Enjoying the Detroit Riverfront with my mom and granddiva |
Who is a caregiver?
You're a caregiver if you give basic care to a person who has a chronic medical condition. A chronic condition is an illness that doesn't go away.
Some types of basic care are helping with bathing, dressing and feeding. Helping with household chores like cleaning, cooking and shopping is also basic care. Many people with chronic medical conditions like cancer, stroke, multiple sclerosis or dementia (Alzheimer's disease) need extra help.
If you're a caregiver, you might be doing these things for another person:
- Lifting
- Turning them in bed
- Bathing
- Hugging them
- Dressing
- Feeding them
- Making them smile or laugh
- Cooking
- Shopping
- Crying with them
- Paying their bills
- Running errands
- Sharing memories
- Giving medicine
How can I tell if caregiving is putting too much stress on me?
You may be feeling sad or blue. You may be crying more often than before. You may not have the energy level you used to have. You may feel like you don't have any time to yourself. You may not be seeing friends or relatives as often as you used to. You may have trouble sleeping, or you may not feel like getting out of bed in the morning. You may have trouble eating or you may be eating too much. You may notice you've lost interest in your hobbies or the things you used to do with friends or family. You may become angry with the person you are caring for or angry at other people or situations. You may ask yourself "why me?"
You may not get any thanks from the person you are caring for. This may add to your feelings of frustration.
Why is caring for someone with dementia (Alzheimer's disease) so hard?
The person you're caring for may not know you any more. That person may be too ill to talk or follow simple plans. This may make it hard for you to think of that person the same way.
The person you're caring for may have behavior problems, like yelling, hitting and wandering away from home. This behavior may make you feel angry at times.
What should I do if I'm feeling overwhelmed and have some of the signs mentioned above?
These feelings are not wrong or strange. Caregiving can be very stressful. Because being a caregiver is so hard, some doctors think of caregivers as "hidden patients." If you don't take care of yourself and stay well, you won't be able to help anyone else. Talk with your family doctor and discuss your feelings. Stay in touch with your friends and family members. Ask them for help in giving care. You're not a failure because you ask for help.
Look for help in your community. Start by asking your church or synagogue if they have services or volunteers who can help you. You also can ask for help from the organizations listed below.
Where can I find out about community services that can give me help or information?
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Is there a resource just for caregivers of people with dementia (Alzheimer's disease)?
This handout provides a general overview on this topic and may not apply to everyone. To find out if this handout applies to you and to get more information on this subject, talk to your family doctor.
Visit familydoctor.org for information on this and many other health-related topics.
Copyright © 2000 by the American Academy of Family Physicians.
Permission is granted to print and photocopy this material for nonprofit educational uses. Written permission is required for all other uses, including electronic uses.
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