Single mom caregiver

[Renae610]

As a single mom caregiver coming to the end of my small amount of spousal support,
I need to get full-time employed but I am full-time caregiving for my 22 yr old chronically ill daughter! The public health nurse assessed two years ago and confirmed what I'm doing is full-time. Now what do I do? My daughter's sleep disorder shifts her unpredictably around the clock so I have no predictable hours to be employed. I would be burnt-out if I added a job on top of what I'm already doing. I know of noone else to help.

 

[TwoCatDoctors]

I put various resources on the board here to help, so start reading through them. Another suggestion is to contact the main number of your City and ask to speak with the Community Services Department. Ask that department if they can come out and see if a caseworker can be assigned to your daughter. Explain your situation and your reasons for getting full time employment so they understand the necessity. (Also understand that full time employment may place you in a higher financial level so that some services may not be available.).

My friend has her adult daughter living in a place on her own. The state provides caregivers and adult day care, but again, her adult daughter does not live with her. Check out all possibilities. The resources on this board are other places to check. Renae, I'm sorry that you are going through this and that our health system just doesn't have clear cut ways to help those that help loved ones. Thank you for all you have done. Good luck and many hugs.
[This Message was Edited on 03/05/2010]

 

[Renae610]

TCD, I greatly appreciate your response! Thanks for everything you have posted on this board. I have read much in the past. I'm just revisiting this issue now, trying to refresh my memory and see if what didn't work before might work now.

My biggest question is, how much "control" does the state or caseworker take over a loved one? How much do they decide of everything and you and your loved one have no choice? For examples,

(1) if my daughter could get her own place (subsidized?), she could not be dumped in some crowded public project building, or adult-day care place or nursing home, because she has an immune system issue and catches illness easily. She can't be around others much (too stimulating for her nervous system). Besides her big sensitivities to noise, smells, light, stress, chemicals, etc. and she needs uncarpeted & allergy-free place, meals made for her based on the few foods she doesn't get sick on (very bad digestion) etc.

(2) How much "time" do they provide for such caregivers to come to the home?

My experience is this:
Shortly after my daughter's breakthrough diagnosis (2007), an integrative doctor ordered PCA care and Medica had to pay for it-- but they decided since she was doing mostly natural healthcare, they'd only pay 2 hours a day, which stopped in 3 months due to other redtape!! They were not basing it on what her needs were and the fact that her body is drug-resistant! Wasn't that discriminating against a special needs person? And if I was working full-time, I could not have them drop her help ever. Plus, I'm afraid that her "politically incorrect" diseases (Chronic Lyme disease, coinfections, etc) and needs will be poorly understood and inadequately met in their hands. I have come too far with her to drop the ball now, when she has her best chance in 10 years now to overcome this disease with the best doc in the country-- I cannot take her out of state to him every 4 months if I am full-time employed.

I just feel that I'm between a rock and hard place.

 

[TwoCatDoctors]

Truthfully, I believe the "system" is set up to try to force family to take care of family members 24/7 and if they succeed, then it is more money left in their budgets. But it does nothing to help you. So you will have to keep searching for help and really push for help.

When the mother and her daughter I know had the state going to cut caregivers hours to the daughter's place, the mother appealed and really fought and won. Most people never appeal. It's the squeaky wheel.

Our Community Services Department of our City has some great people and I know the one social worker/therapist. She works exclusively with seniors, but there are others that work with other age groups. If you cannot get a caseworker do much to help you, please stick with it and be in contact with that caseworker. You may also require an advocate to help. And I think somewhere in the resources are advocates. I do know that because your daughter is disabled, you can also speak with your Agency on Aging and talk to them to see who they can recommend in your area if they can't help you. If one place can't help you, then ask if they can suggest another place you can call--that's how I found disabled services for me a few years ago.

There is also the Independent Living Centers (ILCs) in various areas that are centers and not living places. Find the one closest to you as they are also good resources for info. Ask them about advocates to help your disabled daughter.

Good luck and keep going. Many hugs. Hopefully others will be along with other ideas too.

 

[Renae610]

Wow, I'm glad I asked...*smile*... you are VERY helpful! ... thanks sooooo much!

Also, yesterday I think I may have had a divine appointment-phone call!!.... You see, a couple weeks ago I stopped by a local mega-church, picked up a brochure, and found a Caregiver support group and Hope for a Cure group.... I left a phone message to get dates/times (got no response), so I called again yesterday... I was immediately connected to a lady (pastor)...I didn't have to say much besides that I'm single/caregiver.... and she immediately said, "you deserve an income for all you do and you can get it!!" I was stunned. She mentioned the long-endurance, financial stress, etc. many like me go through. She encouraged me to connect with the groups and invited my daughter to join in if she can with all the 18-30 year old gals. She prayed words that fit exactly for me. She said --we have people here who know a lot, including 2 lawyers to help!

Between what you said and this pastor... I think I've got some new hope!!! Thanks again!!!

 

[TwoCatDoctors]

That is wonderful news. I have a poem I believe in called "Don't Quit" and part of it says "rest if you must, but don't you quit." It may seem tiring to keep pursuing resources, but keep going. Meet with these two lawyers about resources and take a notebook and pens so you can write everything down. Sometimes it is amazing where the resources come from.

 

[Renae610]

Dealing with the crazy life that this disease demands, plus constantly having to research various things is all exhausting over the years, besides the financial pressures. Today I needed a couple hours nap! There ought to be some free in-home stress-relieving massages for caregivers! *smile*

Thanks, TCD!!

 

[TwoCatDoctors]

I forgot to tell you, my friend has a Power of Attorney for her disabled daughter. That way my friend has to be consulted on everything and the State/County doesn't just come in and take over and do what they want.

The major problem is that my friend is terminal and has been given a few months to live. I know that having her daughter taken care of weighs heavily on her mind and she is working with her other relatives to take over in her stead for the future.

 

[Renae610]

Thank you for sharing that about getting a Power of Attorney.

I'm so sorry to hear that your friend is terminal... I pray for her and her daughter!!...

Thanks,
~Renae

 

[Renae610]

Turns out that the local mega-church people could not help... they told me to find an advocate, which I found through Indep. Living Ctr....she is trying to communicate with the State right now to get my daughter approved for disability here... that would qualify her for M.A. and PCA --and again I could maybe get some insurance income... let's hope. I'm also applying for the second time for SSI.. seems that the online application requires more detail than before--frustrating.
My daughter has been sicker this year, post-viral syndrome on top of everything else--it is draining her and me... I am going to take a break tomorrow...have to...

 

[TwoCatDoctors]

Glad you got an advocate to help.

Just a suggestion, before you do the online SSI application, contact your local Agency on Aging. They help ALL AGES who are disabled with completing applications for Social Security Disability (The Agency on Aging came to our local disabled support group and did an entire presentation to him, including telling us they help people fill out the applications for Social Security Disability and it is a little known fact). It may be that an agency helping you complete the application may more completely focus on the answers that SSA wants. (It's hard for us individuals to fill out those forms and they are so long).

I'm hoping things work out and sorry that the church help fell through. Please don't give up and keep going. Thank you so much for helping your daughter.

 

[Renae610]

for this information. The advocate who is helping me with the state disability will also review everything I have typed into the online SSI application and will recommend any changes I should make before submitting it. She will also help to write a narrative that will grab their attention. If or when necessary, she would refer me for legal help or else I can work with the national advocate I talked to before. So I think I'm on the right track, but this whole process just takes way too long when our needs are now.

Thanks so much. I'm grateful that you are "here" for people like me!!
~Renae610
[This Message was Edited on 05/22/2010]

 

[Renae610]

In January 2011, I took my daughter to an MD at a Natural clinic in our state and he helped me get my daughter approved for State Disability. He repeated a test we did a year previous with an out-of-state expert, did the neuro-muscular evaluation, ran other labs, reviewed our records, etc. It cost us alot. She needed the labs anyway at that time.

Once the State approved "certified disabled", several months later, a public health nurse came to our home to evaluate and said my daughter only gets 1/2 hour of daily PCA care... Then I contacted a PCA agency, they sent out a nurse to fill out papers, I wrote up a care plan, I took a PCA training class online, got a copy of my driving record for the agency (so I can drive my daughter where she needs to go), etc. This doesn't help much financially but it is more than I had before. However, her State Disability runs out in June this year. I will find out what they need to renew it for us. Also, in July, if a Judge in our state rules one way or another, family caregivers will get 20% less than other PCAs and/or all PCA will take a cut in pay.

Wow, it's hard enough dealing with an illness, but all these other issues complicate it more.
[This Message was Edited on 03/18/2012]

 

[TwoCatDoctors]

Sounds like you have come so far, but still have to keep at it to try to renew the state disability. The real victims of the state reducing PCA are the disabled.

My prayers are with you and take care and you are a true hero.

 

[Renae610]

Thanks so much for your advice and encouragement.

 

[Maithyl16]

It's really very difficult, sorry to hear about your daughter. But thanks a lot for your advice and encouragement.

 

[rogitgarg4411]

Besides her big sensitivities to noise, smells, light, stress, chemicals, etc. and she needs uncarpeted & allergy-free place, meals made for her based on the few foods she doesn't get sick on (very bad digestion) etc.