Being a caregiver while newly dx and being treated for Lymes

Hi,
I'm not sure if this has been addressed or not, but need some help. I am the primary caregiver for my mother who has several health issues as well as is in the beginning stages of dementia. She also can't drive so I do all of that as well. My issue is I'm just starting treatment for Babesia and will need to treat other co infections of Lyme. I am having strong herx reactions and had to stop meds cause my mother had to go to hospital, is extremely unsteady and fell the next day so had to wake her up every two hours. Couldn't do that with the herx reaction. How do I do both. With her dementia she doesn't understand my need to rest etc. I also have MCS, FM, IC Kidney Disease, Brain surgeries, Heart issues, nerve pain, thyroid issues.

Hi avidreader,

I am very sorry to hear of your situation. You must be of very strong stuff, indeed, to bear up under all that you have been given to carry. My thoughts are with you.

Perhaps it would be a good idea for you to alert your doctor of this situation. He or she would be able to advise you on the best way to take your meds to avoid such violent herxes, allowing you to keep up with your mother's care. Just stopping the meds is not the best way to do that, I think. The doctor will know what level will be still helping you move on with your healing.

Are you detoxing? That can help you weather the herx reactions better. Have a look at our "New to Lyme?" thread at the top of the forum for some good tips on that.

It does sound like you need and should have some help. Would your mom's doctor be able to help with looking into that? Social Services? Friends? Family? I'm not being much help here, I feel. But I want to urge you to keep up with your treatment so that you can be well in the long run. You won't be any good to your mom if you don't get well.

Wow, I remember wheeling my Mother for blood transfusions after her chemo.
I didn't even know back then it was lyme causing my problems. I was so sick.

My hemoglobin was 8.6 and is has to be 8 or below now to get blood. My Mom would perk up after the transfusion and ask me if maybe she should wheel ME out!

It was insane. Almost 3 years in and out of oncology ward with my Mom
and everything that could go wrong went wrong. We would be there 3 to 8 weeks
at a time trying to bring her back to life after chemo.

I was so sick then it was a joke that I was the desiginated care taker for her at
thehospitols.
At home it was easier because people were in and out and my Dad made the meals.

My brother? Was everywhere but here. Bahamas, florida, Up north, Palm Springs.
They just can't handle it. I see it now with my Dad being ill now and my brother
is trying to be there. It's easier without him around. Everything freaks him out.

I used to be in bed 14 hours a day upstairs and get up to take her to the appointments.
My sister would fly in for a month at a time and was great.

You can't do this alone. Even if social services can come in for helping out with going shopping and cleaning. ( they do that)

Try to incorporate who ever else you can from the family.One day or a couple hours a day is a big reliever.
You have to take care
or you too. Truth is ..YOU need a care taker right now.

You gotta keep your spirits up to get through this. It's hard to see your Mom so sick too. It all piles up on top of us emotionally.

The treatment can throw you into depression and make you feel the load even more.

Might try contacting local area churches to see if they have caregiver support services.

Also, talk to a Social Worker at a local hospital for caregiver support and any other help (financial, house cleaning, shopping, doctor visit ride assistance, etc.) for which you & your Mom might qualify.

You might also look into Adult Day Care programs.

If your Mom has Medicare, call them and ask if they cover home nursing or in-home care (non-medical - they do stuff like run errands, clean house, etc.). Even if the person only comes once a week for a few hours, that's a break much needed for you.

Some grocery stores deliver (I know Safeway does this, others might too).

For family members who don't believe in the existance of chronic Lyme, don't talk about Lyme. Talk about your needs and how it makes you feel when they don't believe you. Show your pain to them - it is human nature to hide how bad we feel, but sometimes we really do need to show others how much we are suffering.

Obviously, with dimentia, the previous paragraph doesn't apply to your Mom - there's not much you can do for her to be able to see how much you are struggling.

The only thing that comes to mind is to approach it from the standpoint that you have things you need to do to take care of yourself so that you can be there for her, and then make sure she knows her needs will be met (by services such as home nursing, adult day care, in-home aid, etc.).

I hope this helps...take care,

Some more ideas:

A local Senior Center may have or know of additional services and resources in your community.

Also, might want to contact the National Council on Aging for resources and ideas http://www.ncoa.org/

Utility companies sometimes have special rates for low-income or financial hardship situations.

Medical bills:  Most doctors, hospitals, etc., have some kind of program or help for those struggling financially.  Ask about charity programs, payment plans, and applications for financial assistance.

Prescriptions:  Patient Assistance Programs are available for many prescription medications.  Check out the Partnership for Prescription Assistance http://pparx.org/

I hope this helps...take care,