Loss Of Caregiver

[turtlefairy5]

For the past few months, I have been relying on my mom for basic care such as fixing and/or fetching my meals, going to the grocery store, etc., enabling me to have the energy, most of the time, to do other things that are important for me such as go to my psychiatrist and therapist appts., my CODA meetings, teach my weekly violin lessons (the only way I am able to pay my health insurance), etc.

Recently though, my mom has gotten really really frustrated, resentful, angry and told me that she has exhausted herself caring for me to the point that she can't do the things she wants to do, like attend church. For background information, my mom hasn't been in good health either; hasn't worked in several years, ever since she was diagnosed with breast cancer, though she is in remission now and has been for several years. She suffers from depression, insomnia, and often says she doesn't feel good. She doesn't have health insurance and doesn't see a doctor. She doesn't get any nutrition either - all she eats are sweets and all she drinks is coffee or wine mixed with 7-up.

Clearly, not a good situation.

So, faced with mom's anger over all this, I told her that I would just have to take care of myself. I feel like that's what I have to do because my mom is worn out, especially with the extra strain of taking care of me.

But I don't know if I can do it. Today was okay, I even went for a short walk, but here it is at the end of the day and I am feeling really fatigued, feverish, with a sore throat again, like I'm coming down with something, as it has been all this month off and on.

I talked with firewatcher a little bit about the issue of pushing yourself, but I wanted to also ask here,

Here are my concerns/questions:

What do I do if I can't take care of myself? I did it today, but day after day...I worry eventually I'm going to give out. I don't have much stamina in a day-to-day situation, just bursts of energy if I spend most of the time, most days, resting.

If I push myself to take care of myself, am I going to end up making my condition worse - I mean - MUCH worse? Could I end up completely incapacitated, completely and utterly disabled?

Could pushing myself be dangerous in that I could end up in the ER or even die?

How do I know how much I can push myself? How do I know when I'm fatigued but can/should keep going, or when it is time to stop before I end up with major problems?

This is a bad situation and I really don't know what to do. My mom is at her wit's end, at the end of her rope physically and mentally. I've always felt guilty getting her to take care of me, and now I don't feel that I could possibly ask her to keep pushing herself so that I don't have to push myself.

Mom got mad in particular that she was taking care of me so that I could do other things (psychiatrist appt., therapist, teaching, etc.) that I feel are necessary but she feels are extra-curricular, I guess. I've already had to give up a writer's group I was hoping to attend. I don't think it's fair to have my mom take care of me, but I don't think it's fair for her to ask me to give up important stuff either.

Am I being selfish?

To top it off, soon enough, when the money I took out from my retirement (at the age of 29) runs out, I'm going to be completely financially dependent on her as well.

In the end, it doesn't matter, because it looks like I'm going to have to start taking care of myself, even though I wonder if I really can for any extended period of time. I worry that I'm going to give out and make this condition much worse and/or ruin all chances (if I have any) of eventual recovery.

Please help,

Amber

[taylortotmom]

I can only answer based on the information provided, so I apologize if I am simplifying this situation. It sounds very stressful for both of you. It may be in your best interest for the two of you to go to counseling together and work through some of the anger issues and resentment. Maybe a therapist can help the two of you find a way to get your needs met without anyone feeling burned out or overburdened.

There seems to be a lot going on in this situation including your mom dealing with her own poor health. You state that you will soon be totally dependent on her for financial assistance. If she is financially secure, do you think she would be willing to hire help for you- or even the two of you (do you live together?). Maybe a maid to clean or to arrange to have more meals prepared and delivered in order to save both of you energy. Have you applied for SSDI? Understanding that it is a very long process to get approved but it could alleviate some financial stress for you as well- and provide you with medical insurance.

Going from having someone provide essentially all your care to nothing is extreme for anyone, especially someone ill. Do you have anyone else that can help you while your mom and you work through this? If not, the best I can recommend is for you to save your energy for things that matter. Learn how to use your periods of feeling better for getting things done that absolutely have to be done. I wish you well, and hope you and your mom are able to reconcile on this issue.

[Sophia3]

I agree with counseling idea. Caregiving IS EXHAUSTING and your mom has had scary issues of her own. NOT downplaying your situation just saying.

Resentment builds up when communication has been lacking and somebody feels taken advantage of.

I hope you and your mom can come to some compromises so you both feel better and you nor your mother, abandoned.

[Ernie]

Hi,

It is very exhausting to be a caregiver for a long time. Your mom could join a caregiver support group.

You could negotiate with your mom that she does the grocery and you help with cooking and washing dishes.

[rymac]

Sorry to hear about your situation turtlefairy. I hope you and your mom can work things out. Don't stop looking for help. I'm sure it's frustrating to see your mom not take better care of her health. It does sound like you need a third person to help you both reach a compromise.

Take care

bluesman

[turtlefairy5]

Hi again, thanks for the responses!

To answer the questions,

I will be financially dependent on my mom, but my mom isn't working either. She also took out her retirement (she's in her early 50's), and when that runs out, I don't know what we are going to do, unless...

I did apply for SSDI, was denied, contacted a lawyer and applied for an appeal. Lawyer was not very encouraging, I wondered if he just took the case to hopefully get money out of it either because I get awarded, or I don't get awarded or give up and try to work before then thus appeal gets cancelled and he demands for me to pay for time he spent on the case - he didn't seem enthusiastically convinced that I could get SSDI, and he said that it could take up to 2 years just to get a hearing - money will most likely run out before then. Plus, I don't know that my cardiologist will be able to testify to what extent my condition is disabling - he seems to be pretty nonchalant about it. His nurse always asks me about how I'm feeling, and I tell her that I'm unable to work or even complete normal activities, but, I don't know if the doctor realizes how bad it is (therapist tells me that I need to make him aware).

So yes, I do have a therapist, and actually mom and I have tried to go together before to work on our issues, but the therapist is primarily my therapist, and mom knows that I've shared with her issues concerning our (me and my mom's) very rocky relationship, so many times she doesn't trust my therapist to be objective. She'll ask me to present things to my therapist that we argue about, but then when I tell her what my therapist had to say, she accuses her of being biased as my therapist. Essentially, she doesn't really trust the therapist. I couldn't afford to get a second therapist that we could see together, my money is running out and I need it to pay for health insurance or else things will really be bad, and my mom will not use any of her money to do therapy.

I do live with my mom, by the way.

Plus, and this is just a whole other barrel of worms, but even when I do try to do things on my own, I'm limited in that not just because of my condition, but also because of my mom's problem with OCD. She doesn't want me to touch things or lay certain things on certain places on the counter - she doesn't like for me to do things for myself because I don't do it her OCD-way. For example, the refrigerator is full with empty bottles and such, so after I made dinner, I couldn't find a place in the fridge to put the leftovers. She won't let me clean out the refrigerator - she's afraid I'll throw something away that she doesn't want me to throw away. If I even tried, she would want to stand by and point out things she wanted to keep. Momma wouldn't let me try to make a place in the fridge - she had to do it herself because of her OCD, yet I could tell by the way she acted that she resented having to do it. So then I felt like I was hurting instead of helping just by making my own dinner, creating work for her to do by having to find a place to put the leftovers in the refrigerator! Before I could cook tonight, she had to clean out the food that she keeps in the oven. Last night when I went to get groceries, she had to be the one to put them up because of her OCD - again, in a crowded pantry, she didn't trust me to find places to put the food. Ultimately, she stacked a lot of it on the counter, this it is even more difficult to prepare food. Good grief. The pantry is crowded, the counters are crowded, the oven has bread and bagels, etc. in it, but momma wouldn't let me try to reduce in anyway - part of the problem is that we don't have cabinet space because she hoards dishes (we have something like 25 coffee mugs). We have a lot of stuff we don't use because hoarding is part of momma's OCD.

Even if we had the money, there's no way my mom would allow someone in the apartment because of her OCD and the resulting state that the apartment is in - noone but she and I have been in this apartment since we've lived here (6 years).

I'm in a pickle. and completely off-topic.

Sorry to go into a full-fledged rant.

I find that I'm dealing with a whole lot more than a physical illness - I have to deal with my mom's health, physical and mental, not to mention my own pretty fragile mental health (I'm a "beeper" - bipolar).

Amber

edited to add: Though she's tried medication before, my mom refuses to get help for her depression/OCD at this time due, in part, to bad experience with last public mental health psychiatrist and, again, she doesn't have health insurance to seek a private psychiatrist. Again, pickle.

[Ernie]

Hi,

Ask your mom what she suggest as a solution to the grocery and cooking problem.

[Sophia3]

Wow. yea you both need therapy... your mothers issues alone are huge/irrational with the hoarding problem.

and well, honey, you need way more help than we can give you here as you well know. But I wish you well in getting joint counseling!! serious stuff going on in your household, no doubt. Hope you can find a way to peacefully co-exist.

[mjan]

So sorry for all you are going through.

Both you and your mother have serious mental health issues..hard to resolve..but not impossible. Do you have any friends? Perhpas living with someone else may take the burden off of you.

Getting SSDI is very hard. I dont know if 1st you even worked long enough to qualify..but SSI is for low income folks. Its not much to live on believe me. Getting SSDI under 50 is REALLY hard. The attorney will only get paid if you get approved. ANY disorder that can be TREATED especially by meds is usually denied..denied..until you are older. So.. could you work.. maybe part time? You can work p.t. on SSI.

Its hard I guess..but think of these things. STRESS can make you both sicker

Any support group YOU could go to?

Take care of yourself..

WArmly Jan

[turtlefairy5]

Hi, thanks again guys.

The caregiver support group could be beneficial if I could convince her to go.

You're right, I know I've got more going on than peeps on an online support forum can fix, but I appreciate all your concern and suggestions!

I've been pulling out my hair over the issues my mom has, the issues we have with each other, for years now. When I was in high school I went to live with my youth pastor's family because of it, had to switch schools and everything. It's just gotten more difficult with POTS now, as everything does, as you all know.

Thanks again for the advice and help!

Amber

Oh, and by the way, I have asked my mom what I could do, or how we could compromise, but at that point she just gets angry and gives the silent treatment, storms out of the room, or makes some unhelpful comment such as "I don't care what you do."

[Miriam Poorman-Knox]

Hi,

Since one of the things your mom wants to do is go to church, perhaps they have Stevens Ministers. They can do errands bring meals... anything that you need help with. It is indeed possible to get SSI, if you have the disability. I am no specialist, by the list you have you could be able to receive on different diagnosises. Find a lawyer that cares. If the approach is I'm not sure--then you will be that is not the one for you. You may also try Legal Aid. They help for free(within income limits). M

[pat57]

you have to take one day at a time. I will bet you that the answers you need come to you as time unfolds.

Its a difficult thing to wait for the future to come and not stress about it. But the reality is that -that stress is worst for you than the

unanswered questions.

Also there may be a human resources section in your phone book with places to call that could help.

good luck

[Guest brianala]

You may be capable of more than you realize. Perhaps you have a friend that you could live with for a few weeks to give your mom a break, and see if you can manage on your own (but with someone there to support you if you need it)?

I also agree that counseling is a good idea for both of you. There's more than just your POTS at work here; the combination of your issues and your mother's may be clouding your ability to see just how capable you are to manage for yourself.

I wish you the bets of luck!

[turtlefairy5]

Thanks again everyone for the support!

Amber

[jump]

What about meals on wheels? They deliver in almost every part of the country -- even really rural areas -- and they are completely free. If you have a little money to offer as a donation, they'll take it, but it's by no means expected.

I deliver for meals on wheels in my area as a volunteer (when I'm well enough) and there are several people on my route who are young but disabled. You do not have to prove you are disabled or financially discouraged to be allowed to get meals -- you just have to have a need for them. You also don't have to be completely housebound -- I have several clients on my route who can work part time, or get out to appointments, but can't do all that AND cook and grocery shop for themselves. And they usually accommodate some food allergies, depending on how severe and how restrictive they are.

And I like someone else's suggestion of asking someone in your mom's church to maybe grocery shop for you once a week. I belong to a church, and there are lots of people who do things like that for friends or family of other church members. Or, if you don't want to get too tied up with your mom's personal space, you could just call around your local churches and ask if there would be anyone willing to help. Something like a once-a-week grocery run is easy for church people to do because it's very specific, and a lot of people go to the grocery store anyway and don't mind picking up someone else's things as well.

I think others are right, it sounds like you and your mom have some "big picture" problems to work out (finances, caregiver stress) but if you can deal with the immediate issues of finding resources to help you take care of yourself in the day-to-day stuff, it might make it easier to tackle some of the bigger issues.