I count 1, 2, 3, and push myself up from the recliner, grabbing onto the handles of my walker positioned in front of me. I pause in my standing position, take a deep breath, and adjust to the pain in my knee. The pain has been getting worse, but I don't want to bother my kids about it. I can take tylenol or ibuprofen if it gets really bad. I wait for the slight lightheadedness to clear. I tell myself, "It's just seven steps to the kitchen." I carefully step forward, gripping the handles of my walker tightly. A couple nights ago, I had felt wobbly and caught myself from falling just in time by grabbing tightly to these same handles.
"Oh shoot, I left my mug on the dining table." I let go of my walker for only a moment, turn to my right to reach just behind me, and "AAAGGHH - "
I'm on the floor! I've landed on my right side. "Oh no," I grimace as I start to feel excruciating pain from my hip down.
Many times, as a combination of illnesses or diseases worsen, a person's physical ability to care for themself diminish. A person with decreasing stamina or energy may no longer be able to complete a shower. Worsening shoulder pain may make it difficult to brush hair or brush the teeth. Dizziness or imbalance issues may make a person nervous about bending over to pull up their socks or put on their shoes. They may have trouble with any part of the toileting process. Falls from imbalance, fatigue, leg pain, lightheadedness, or other symptoms may result in fear of walking due to fear of falling.
At times physical ability is not the concern, and rather issues such as initial memory changes or financial difficulties cause the day to day stress. A person may forget to pay bills or become confused with driving, getting lost on the way home from the grocery store. They may not be taking their medications every day, though they intend to, finding leftover pills in their pillbox at the end of the week. They may be able to afford only three quarter of their medications to buy bread, milk, and eggs for the month.
Sometimes a person does not want to share these personal life changes with family members nor ask for help because they do not want "to be a burden."
Many of us strongly value our independence and control. We take pride in our independence and resiliency, and a perceived loss in independence may result in our feeling "like a burden." Yet, there may be a time in our lives when our bodies will force us to redefine independence, and this new definition will be different for everyone.
"Independence" for one person may be not having to rely on someone else to "wipe the butt" after a bowel movement. "Independence" for another person may be retaining the capacity to say "No, I don't want to take that medication" even if they are dependent on other people for all physical care.
Or we may feel that our children or other close family members should not have to take care of us, that they are busy enough already and that they should not have to worry about us as well. However, we may not realize that keeping the truth from close family members may result in their feeling dismay or shock if and when they learn later how we have been living.
Sometimes adult children discover how their parent has been getting by when they are notified of a medical emergency (such as their parent breaking a hip from a fall) or health crisis (such as their parent losing a significant amount of weight and strength from inability to obtain groceries). Sometimes a brother or sister learns how their sibling has actually been living when an adult protective services liaison contacts them.
By hiding our day to day difficulties from our children or close family members to "not be a burden," we may unintentionally be setting them up for bigger worries in the future.
The following are suggestions for the person who feels "like a burden" and is hesitant about sharing with family members their difficulties in performing what had previously been routine day to day tasks.
1. Be honest with yourself about what you are able to do and not.
I feel nervous I'm going to fall. I don't feel comfortable walking on my own anymore. The knee hurts more, but I don't think it's the pain. I feel wobbly.
2. Think about what would be acceptable for you versus not.
I want to stay home as long as possible, and I want to feel safe in my home. I'm not moving in with one of my children. If I get to the point that I could not stand up and needed help getting from the bed to the chair, I'd rather go to an adult foster home.
3. Tell your children or other involved family members that you want to talk to them. Ask for a time when everyone can sit and talk for a half hour to an hour.
"Sammy, can you tell your brother and sister to come up with a time when we can talk together online? You're going to help me with Zoom again."
4. Talk to your children or other close family members about how your day to day life has changed now compared to a year ago.
"Things have changed the past three months. It's harder to keep my balance. I fell once getting from the bed to the walker. I was able to eventually get up - I didn't tell you because I didn't want to worry you - but there have been a couple times when I've had to catch myself against the wall. My knee has been acting up, but I don't think that's it."
5. Keeping in mind that your ability to perform day to day activities may change further, share with them what is most important to you.
"I don't want to lose my independence, which to me means having to move in with my children. I know all of you are busy with your own families and your work. I wouldn't want to be an extra burden and an extra worry in your household. If I have to hire help or move into a home, then so be it. I don't want to, but at least that is how I would maintain my sense of independence. I don't ever want to have to move in with any of you."
6. Ask your children or other involved family members to be honest with you about their struggles and concerns so that it is easier for you to be honest with them and for all to work together.
"I'll try not to keep things from you again. But I want you to be honest with me if any of this becomes a burden for you. I don't want you to have to do all the worrying and planning and doing. I want to be a part of the conversation - I want to have a say in what happens to me! - and I can only do that if we don't keep things from each other."
7. Develop goals together. Develop back up plans together.
I feel relieved. We should've had this family talk a while ago. Sammy is going to stay with me weeknights until the kids can hire someone to stay with me at night. They're going to look into insurance coverage and cost. Bri is going to stay with me on the weekends. Mark is going to look into getting me a Life Alert for when I'm alone. He had the good idea to ask my PCP (primary care physician) for a physical therapy referral.
Even if a plan is established after the initial conversation with close family members, conversations like the one above will likely have to take place multiple times as a person's strength, balance, energy, breathing, memory, or alertness changes over time. What is most important to a person may also change over time (read Post 8: I Want the Best Care Possible for ME - Part 2 of 2).
Bri is dropping by every morning after she gets the kids to school and every night after her kids are asleep. She says it's not safe for me to sit in my chair all day waiting for her to come so she can pull me up from the recliner to use the bathroom and help me into bed. She's been really good about helping me since Sammy moved to Dallas. I just wish we could find a night time aide that'll stick around. Bri keeps asking me to move in with her, but I don't want to be a burden to her. I don't want to use up more of her time. And I've already given up a lot. I don't want to lose my home too...
Yesterday, Bri shared with me something she's never told me before. Before, she used to say she wanted me to move in with her because it would be safe for me and it was what my PCP recommended. Yesterday, she admitted that she's struggling to make the drive to my home every morning, worried if she'll find me in bed or on the floor, worried if she will make it to work on time. Her marriage is being affected by her leaving every night to help me to the bathroom and to bed. She said it would ease her worries and her time constraints if I moved in with her. "Please move in with me for ME," Bri said.
I'm going to move in with her.
Hopefully the above steps will help some people who feel "like a burden" to initiate and maintain open communication with their loved ones (in Post 48: How to Respond When Someone You Love Says, "I Don't Want to be a Burden - 5 Thoughts, I encourage open communication from family members as well). Acknowledging the reality of a situation and addressing it earlier on may allow a person more opportunities to have a say in where and how they end up living as their health changes (and hopefully to prevent medical emergencies).