The Gentle Art of Keeping Help Coming Back

There’s a weird pattern that happens after your first DOD. That’s Date of Diagnosis, by the way. People come. They want to know. They have ideas. They have cures. They keep saying that thing caregivers hear – and cannot believe enough to follow up: “I’m here for you. Just tell me what you need.”

And then the illness your loved one has, or their injury, or those things that changed everything and made you a caregiver lasts longer than two weeks. It isn’t interesting anymore. It takes time. It takes you away from your usual groups and people. And suddenly you are alone.

You still may not know what you need. How are you supposed to ask?

In our culture grief is supposed to be over after the funeral. That’s also about two weeks (minus Covid’s impact). The same goes for taking care of someone. You mean they still need help? You still can’t return to normal schedules and activities?

Suddenly your world gets smaller along with your loved one you are caring for- just as you need to be reminded of what was and who you are.

I get it. I really do. I have been a caregiver for two terminally ill spouses. I am currently a caretaker for my mom, who is battling dementia (and I do mean battling). I helped her with my grandparents as a teen. I’ve stood by countless hospice families as their social worker. I get it.

Caregivers in general have some really bad habits. We do not ask for help. We do not take good care of ourselves. We do not sleep enough. We lose our old selves because someone we love needs help, and we want to be able to make that happen. (I will address self-care later in the Alpha program. Not today).

What do we do to get the help we need? (I use the “we” because I am one of you.)

Make Your Caregiving Lists

What does it take to make your world work?

All the things. Not just “grocery shopping” — get your loved one up, fed, dressed, into the car, write the list, get to the store, get into the store, shop, and reverse order, and put everything away. And that’s just one thing!

1. Laundry
2. Bed-stripping
3. Towel-hanging
4. Mopping
5. Carpet scrubbing under the potty chair and putting down protection
6. And on and on and on...

What personal errands do you need to get done and to do without your loved one? (Ladies —when was your mammogram?)

What legal documents are not yet done?

1. Identify them
2. Find a mobile notary
3. Decide how to find the right documents

What activities are you missing that lighten your heart and bring you moments of joy?

1. Which ones can your loved one go with you to do if you have help?
2. Which ones do you need help with so you can go or attend online?
3. What things do you still need to adapt your home to make it work better? Or do you need to move? As an example, my mom and dad made their home completely handicap accessible because my dad was confined to a wheelchair. We had a bigger home, but my mom was settled in her perfect house for someone who was handicapped. It was safe. We sold and moved in next door to her. The other option was to sell both and buy a home that would accommodate everyone. (We chose the live-next-door option to save some privacy and still have safety.)

I couldn’t move when my spouses were sick, so I added child gates to prevent stair falls, signs to stop them, removed furniture and rugs, added ramps to exterior stairs, and added lighting. I also bought comfy chairs that were the right height for sitting next to a hospital bed to prevent back and neck strain. I recommend it.

Make a list of your people — all of them.

1. Friends
2. Family
3. Colleagues
4. Social media friends you really know
5. Church/temple other friends
6. Anyone else?

Now: Put all these caregiving lists together.

1. Who is available you know you can count on if you give them just one task?
2. What tasks can you comfortably share? (Even if you order groceries online, can someone come meet them and get them out away and maybe clean out the fridge at the same time?)
3. What tasks can you afford to pay to have done?
4. Are there relatives who keep saying they want to help but cannot come? Can you ask them to cover a housekeeper or meals from a weekly delivery service that meet the dietary needs of your loved one? There are many out there and they eliminate the need to go shopping if done right.
5. Who is available to simply come and sit so you can leave? (If you need a notebook that collects medical and caregiver info you can download one at no cost at The Rebellious Widow — no cost, no spam. Just help.
6. Finally — give yourself permission to ask. And do.
   

I realize that seems oversimplified, but many times those not in the home do not know what you need. They may be nervous about helping unless asked and informed. And you probably do not realize just how much you do all day and night — and how much can be tasked to someone else. I can still remember how much of a difference it made to have laundry show up clean and folded — and out away! Or to see my yard being weeded. Or my kids being taken out for a weekend afternoon. Those who helped still talk about how much it meant to have been able to be part of things. They wanted to be asked.

And those who were allowed to come and sit so I could leave? It gave them the chance to spend some special time that they otherwise would not have had. It made my spouses' worlds bigger again, and it gave everyone time together to say the things and find some smiles. Sometimes it was just chocolate shakes and watching “Monk” re-runs.

Caregivers, we are each other’s people. Make your caregiving lists, and ask for help — you deserve it.

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Photo by Vlada Karpovich from Pexels