I have been caring for my mom all on my own, but when she was in hospital all these people came out of the woodwork offering their support. Now she’s coming home, they’ve disappeared again.

Give them specific tasks, says our elder. You can’t do this alone.

Dear EWC

My mother hasn’t been able to walk ever since last Thanksgiving because she was diagnosed with fatty liver disease and it has heavily affected her legs, so she can kinda walk but it’s very weak. Watching your mother not be able to walk at 40 is very hard. At one point she couldn’t get out of bed to go to the bathroom so I would have to pick her up and carry her. My brother is not strong enough to pick her up like I do so if she falls he can’t do anything to help her except try to help her up. All of her friends knew she was going through this but no one offered me any kind of help when I was working and going over to my mom’s house and making food for her or carrying her to the bathroom. I would come to her house in the morning and go to work and then come back late at night and I would repeat and no one was there. Just me.

In late May she got very confused and scared and wanted to go to the hospital so we called her an ambulance and told her we would meet her there the next day. She was moved to the ICU. That weekend I started calling around notifying friends and family, and my mom’s sister came from a few states over to help. Turns out my mom had legionnaires pneumonia. It’s a mostly fatal disease.

But all of these people came out of the woodwork and were there by her bedside crying and offering me so much support, and everyone wanted to be on the list of people to be able to call and get updates on her condition. But where were these people when my mom needed help walking to the bathroom or getting food or I needed help because I was exhausted from getting a few hours of sleep in between taking care of her and working? Things weren’t looking good for my mom — she was just getting worse and one day she just woke up. She started talking and she began to recognize people when they came in and she was back to normal. That’s when people stopped coming around. She woke up and now I’m in the same situation and all those people that care so much aren’t anywhere to be found. My mom got moved out of the hospital into a rehab center and she will be released in two weeks.

It just really bothers me because I had been so excited when she woke up and I was telling my mom about how many people really do care about her and she doesn’t believe me because no one is there. Day after day I drive the hour drive from work to the rehab center and I’m the only one that comes — none of her friends that needed to be on that call list so that they can be updated are there. Just me. I guess I’m writing this more to vent or to get someone else’s opinion on the matter. Am I right to be bothered by this?

Granny J replies

Thank you for writing to EWC. I am sorry to hear about your mother’s illness, and all her health issues, particularly at such a young age. As you said, there were many people who came forward and were concerned when your mother was very ill, but they have receded now that she is better. Unfortunately, that tends to happen, and frankly the kind of help you need with your mother is not just a few people who stop in for a minute, every once in a while. You will need regular, reliable, responsible people to help care for your mother so that you can continue to work and live your life. If you continue as you have been, you will burn out.

People really are willing to help, but they have to be given specific tasks. They won’t call you and say, for example, “I’m going to go help your mom to the bathroom tomorrow”. You have to assign that task to them (of course the person needs to be willing and able to carry out that task). Does that make sense? If you have a large enough group of family members and friends that have offered help, give them some things to do. Make a list of the things you need help with every day, call the people who have offered, and ask each one to take a task. Maybe a few days a week three people can bring a meal. Maybe others can go check on her once a day, or whatever the need may be. You might consider giving that a try to see if it works out.

Your mother will more than likely have Home Health visits from a nurse, physical therapist and a nursing assistant once she leaves rehab, but this is for a limited time. If you can get volunteers to go check on her also, that may fill in many of the gaps to give you some relief. However, the question is what will happen in the long term? It sounds like your mother’s issues are chronic, and recurrent. She may need more continuous supervision and care at times, for her own safety and well-being. In-home sitters are expensive, but it’s an option you may consider in the future, possibly on a part-time basis.

The rehab facility more than likely has a case manager and a social worker assigned to your mother. I suggest making an appointment and going in and meeting with them. Explain that you are her “primary caregiver” (I assume your dad is not in the picture?) and ask them for suggestions and options for obtaining assistance with her daily care at home when she has exacerbations of her disease. They will know what resources are available in your area, and which ones your mother will be qualified to obtain.

I realize your mom may be “well” when she gets home from rehab. She will likely be alert and in charge of her situation, but things may change over time and you may be faced with the same dilemma. I encourage you to meet with rehab, as I suggested, before she goes home, so that you have that information to fall back on. I also suggest you and your mom talk about possibly hiring sitters, even if just part time, if a future need arises. You may consider offering to share the cost of sitters with her if she has limited means. Lastly, don’t hesitate to call those friends and family members that offered to help, and ask them for an hour or two to go stay with your mom, whenever that need arises.
I hope this helps If you have any questions, or need more advice, please feel free to write again. I will be thinking about you and wishing you, your mom and brother the best. Take care!

Letter #: 443342
Category: Family