Need some ideas regarding getting more help

[kristin]

My daughter is my sole support person and she is getting burned out. I only ask her to do the bare minimum but as my illness progresses; I am able to do less.

Currently she takes me to all my ME/CFS doctor appointments, does all my grocery shopping, and prepares my meals. She also helps me financially because my only income is disability. I blew through my retirement waiting for SSDI and paying cash for medical care for about two years. She lives about 50 minutes away so the drive is long for her as well.

I used to belong to a very large church but they do not have a ministry that helps members that are chronically ill. I have called United Way and all other social service agencies in my county. I either do not qualify because I am not old enough (like transportation services to/from doctor appointments are only for retired) or there are no services. There is no mass transit where I live and like many of us, all my friends are long gone.

Other family members are not available. I feel my daughters resentment growing and do not want to further jeopardize our relationship. Any ideas would be greatly appreciated. Thanks to all.

 

[Andrew]

One idea. I order my groceries from Vons via their web site. There are probably other market that do this. See if you can have your groceries delivered, and see if you can afford the charge.

Anyway, you have said you checked everything, but I'll list some ideas anyway. There is Meals on Wheels and Project Angel Food.

On Google, you can enter your zip code plus the word "church." Then email all the churches near you. This didn't work for me, but maybe it will for you.

With unemployment so high, there might be someone who will work for you as a caregiver at a low cost part time. This will take some load off your daughter.

Also, let your daughter know you are looking for ways to take load off her. And check ProHealth's search gizmo for support groups. Maybe there is one near you.

 

[caledonia]

You may be able to dial 211 to get hooked up with various social services. This is a service of the United Way (I think) and covers about 80% of the country.

You can go to benefitscheckup.org, plug in your info and financials and see what you eligible for. For example, I get one of my drugs for free from the drug company (which saves me $150 a month) and I get a discount on my phone bill (saves me $10) a month.

Since you blew through all of your savings, you are probably also eligible for SSI, food stamps, etc.

I've heard of someone getting a helper through the Centers for Independent Living. You have to be low income to get this. The helper is not free, but is low cost.

If you are on disability, that should be treated the same as being retired/elderly. Maybe different agencies vary on the policy, not sure.

 

[kristin]

You may be able to dial 211 to get hooked up with various social services. This is a service of the United Way (I think) and covers about 80% of the country.

You can go to benefitscheckup.org, plug in your info and financials and see what you eligible for. For example, I get one of my drugs for free from the drug company (which saves me $150 a month) and I get a discount on my phone bill (saves me $10) a month.

Since you blew through all of your savings, you are probably also eligible for SSI, food stamps, etc.

I've heard of someone getting a helper through the Centers for Independent Living. You have to be low income to get this. The helper is not free, but is low cost.

If you are on disability, that should be treated the same as being retired/elderly. Maybe different agencies vary on the policy, not sure.

caledonia,
Thank you for your response.

211 is where I started 3 years ago and I still call them every six months to see if they have added anything new. I don't know if it's because I live in a conservative state but 211 has extremely limited services for disabled.

There was one agency that would help with a wheelchair if I needed it (I don't) and a disability transition support group. That would have really helped but no transportation and it is 30 miles away.

I qualify for $13/mo in food stamps which I have chosen to forego because of the benefit vs. stress factor.

Also have checked into Centers for Independent Living but my income is slightly too high.

I went to http://benefitscheckup.org/ but that site is no longer supported. I may look around to see if there are similar websites.

 

[kristin]

One idea. I order my groceries from Vons via their web site. There are probably other market that do this. See if you can have your groceries delivered, and see if you can afford the charge.

Anyway, you have said you checked everything, but I'll list some ideas anyway. There is Meals on Wheels and Project Angel Food.

On Google, you can enter your zip code plus the word "church." Then email all the churches near you. This didn't work for me, but maybe it will for you.

With unemployment so high, there might be someone who will work for you as a caregiver at a low cost part time. This will take some load off your daughter.

Also, let your daughter know you are looking for ways to take load off her. And check ProHealth's search gizmo for support groups. Maybe there is one near you.

Thank you Andrew. Your idea to just let her know that I am looking for ideas to lighten her load was a big help and gave me a few ideas as well.

 

[jenbooks]

Is there a meals on wheels around you? I bet if you could get the groceries delivered, and some of them were easily prepared by you (healthy tv dinners, peanut butter sandwiches or cheese and egg sandwiches, frozen foods--Koan has talked about her lentil/egg/veggie stew she makes in no time at all), then at least your daughter would not have to grocery shop and cook. That would make things easier.

 

[Dainty]

As for your church, even if there's no ministry officially dedicated to helping the chronically ill it's likely you could find individual people happy to help out if you let the word out that there's a need. Perhaps a note in the bulletin, or if you know someone who is really involved in the church and who would be happy to spread the word and organize for others to help out as they volunteer.

 

[caledonia]

benefits checkup kaput

Too bad, that was a great resource.

If the area you're living in is bad for social services/transportation, you might consider moving to a better area.

How is the area around where your daughter lives?

 

[kristin]

Feeling tremendous relief

I want to thank everyone for all of your ideas and suggestions. You have provided me much food for thought and I already have the ball rolling in a couple of areas.

My girl is feeling much less burdened and wanted me to extend her appreciation to all of you as well.

Peace and much gratitude to everyone on this forum.

 

[Andrew]

Here are a few more things I do.

1. I buy prewashed salad mixes. Sometimes I just add dressing. Other times my part-time caregiver adds other veggies and puts them in bags to last me several days. Salads are actually the most tiring thing for me to make.

2. There is an Italian restaurant near me that delivers. One of their dinners is so large I can make three meals out of it, and that's a big savings. I simply reheat as I go. In fact, I have saved every flyer I get about restaurant's that delivers. Some are inexpensive. So, for example, I might have chicken and fish delivered that would last a few days. With this I heat frozen veggies and eat my premade salads.

3. On days when I'm too sick to get my mail, ask a neighbor to help.

4. All my prescriptions and supplements are mailed to me.

5. Sometimes lunch is just a can of progresso soup, rice cakes, and some V8 juice.

Anyway, this is me. I don't know what works for you. Just some ideas here.