You Wanna Have a Plan

The caregivers:

Eileen

Eileen moved in with her mother, Verna, when Verna could no longer care for herself. Verna had dementia and got to a point that it was unsafe for her to live alone. Eileen was an only child, and Verna’s only living sister lived in a skilled care facility and had her own health problems.  Eileen was divorced and had no children. She worked hard taking excellent care of her mother.  As Verna’s disease progressed, Eileen’s small group of friends began drifting away, because Eileen didn’t have time for them. Still, she prided herself in her own ability to take care of everything herself. However, Eileen knew she was getting burned out from the non-stop care her mother required, but what could she do?

One day Eileen accompanied her mother to a doctor’s appointment. The nurse asked Eileen how she was doing.  “Fine,” Eileen said automatically.

The nurse studied her, but didn’t respond.  Instead she took out her blood pressure cuff.  “Do you mind if I take your blood pressure?” she finally asked.

Eileen agreed. When the nurse finished, she said, “Eileen, your blood pressure is very high, and you look exhausted.

“I am tired,” Eileen admitted. “Actually, you’re right. I’m exhausted. And I’ve been getting weird pains in my chest lately. But I have to keep going. What choice do I have?”

The nurse sat down with Eileen.  “When was the last time you saw your doctor?”

Eileen said it had been way too long, she knew that, but she didn’t have anyone to stay with Verna. She didn’t want anything happening to her mother.

The nursed moved a little closer, and said gently, “Eileen, what happens if something happens to you?”

Tess

Tess took care of her husband, Jim, who had Parkinson’s Disease with dementia. Tess and Jim had lots of family and friends with whom they visited. Tess also had constant knee pain. Sometimes it was so intense it brought her to tears. Still, the kids were always dropping by at dinner time, or bringing their children over for Tess to watch. It seemed like there was always an extra dog, or child or demand on Tess’s time, yet when her doctor told her she needed a knee procedure done that would require an overnight hospital stay as well as rehab, Tess immediately refused. “No way. What am I going to do with Jim?” she responded.

Paul

Paul took care of his wife, Mary, who had COPD (Chronic Obstructive Pulmonary Disease).  They had three grown children, all within an hour’s drive, but they all had jobs and busy families. While they visited regularly, Paul didn’t want to burden them with Mary’s care, so he rarely discussed her care with them. When Paul fell on the icy driveway and had to have emergency surgery for a broken leg, he didn’t know what to do.  Mary needed help with her breathing treatments, her oxygen, her medications, her meals….how could he manage?

He realized he couldn’t. He had to have this surgery and Mary needed assistance. He needed someone to help, but he didn’t know who could or would be able to make such a sacrifice. After many phone calls and texts and explanations, and a lot of stress, Paul was able to line up enough helpers to ensure that Mary had the care she needed. 

In the past, Paul had thought about what would happen if something happened to him. But when reality set in, he wasn’t sure what to do.

“It made me realize how important having a backup plan is,” Paul said later.  “If something left me in the hospital, or worse, well….”  Paul paused, and wiped a tear from his cheek.  “You wanna have a plan.”

The Plan

Eileen, Tess and Paul all needed to have a caregiver contingency plan in place. A caregiver contingency plan is a backup plan that ensures that the person you are providing care for will be safe and will receive proper care, even if you cannot provide it yourself. It’s your emergency plan. It can be used when you really need a break, if you need to schedule some time for a mental or physical health issue, or if an emergency arises. It’s a plan that begins with the first person you want to get in touch with, and ends with knowing your person is safe and well cared for.

Start With a List

Imagine what should happen if you needed to schedule some time during which you could not provide care for your person – perhaps a family or work obligation, a medical situation or maybe a vacation! Or, not as fun to think about, an emergency situation which left you unable to provide care for your person.

Think about what your backup plan would look like. Who needs to be contacted? What do they need to do? A well thought out plan is more likely to work and save both yourself and the person you care for unnecessary stress. Then write it all down. If it’s possible, write the plan with the person you care for so you can get their thoughts on what should be included and what they’d like to have happen. You may also decide to include other family or a trusted friend in this process.

Needs Help With….

List everything your person needs help with – the things you do for them. From preparing meals, helping them dress, medications or treatments, to grocery shopping, feeding the cat, and balancing the checkbook. You may want to write everything out on a calendar. Is there a daily routine? For example, Mondays are for grocery shopping, Wednesday is laundry, and Sunday means the pill caddy must be filled.

Healthcare Needs…

What are their healthcare needs? What medications do they take and when?  Can they manage the medications themselves? Where are they kept? What pharmacy is used? Note any allergies, incontinence issues and specific products used.

Other Needs…

Be sure to list any communication difficulties, behavioral issues, dietary, meal preparation or feeding requirements, and any mobility challenges and mobility aids such as a wheelchair. Is overnight care required?

Make a note of your person’s likes and dislikes. Are there any particular things that would upset them?

What about pets? Think about arrangements for them in an emergency.

List contact information for doctors, pharmacies, and any other professionals that your person sees or deals with regularly, including insurance information.

Passwords are required for everything today, it seems. Provide a list of passwords so if the need arises, your trusted person has access to what they need.

Do you currently have someone coming into the home to provide care or services? If so, provide contact information for those services, too.

Emergency Contacts

When your master list is complete, decide who you can rely on to provide care in your place.  It may be one person, it may be a few, or it may be many. Be as creative as needed to get the job done. One caregiver had an Emergency Contact Person (ECP) who lived next door.  The ECP called three other people and stayed with the person until one of the three arrived. The ECP had a key to the house, an up-to-date calendar with daily routines, and information on the person’s needs. The other three people included two adult children and a trusted friend, who was retired. They all knew exactly where medical, financial, and legal information was if they needed it. The three coordinated their schedules with each other so that someone would always be with the person, as was needed in that situation.  Other situations might include daily or weekly care, depending on the individual’s needs.

When deciding on emergency contacts, consider whether or not the person will actually be willing and available to help in an emergency or will they have their own commitments. Speak to them. Determine if there are specific days when the ECP will and won’t be available to help, and the length of time they can help. Will they stay overnight? Do they live far away, so you’ll need someone to cover until they get there? If needed, are they eligible for a family leave program at work? Be sure to have a conversation with the person to make sure they are on board with what you are asking.  It may sound good as an idea in your head, but reality may play a different tune. Be sure to include contact information for the ECPs on your master list of information.

Finally, make sure they have a key or a way to get into the house. It may also be a good idea to go over any unusual or more complicated care needs – in person if possible, so everyone involved feels comfortable. Review and update the contingency plan regularly so you can fill any holes if needed. Have a copy of the plan available in a place the ECPs know about, or provide them with their own updated copy.

A good, well thought out contingency plan will give you and the person you care for peace of mind, knowing that back up support can be put place in case you need it. This could help prevent a stressful situation in the future and lift a weight from your shoulders.

If you have questions, comments, or have caregiving topics you would like to see on this blog site, please send an e-mail to caregivers@upcap.org.

Until next time, pidä huolta itsestäsi!

Disclaimer: This blog exists to provide general information, not specific professional advice. No content on this site should be used as a substitute for direct medical advice from your physician or other qualified clinician. No products are endorsed on this blog.