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Topic Working Full Time, 2 Teenagers, College & PD Go to previous topic Go to next topic Go to higher level

By Josie On 2016.10.18 21:46
Hi there, this is my first time posting to the forum. I read about 60 post and finally jumped into the water. Thank you for all sharing in this forum and the caregiver forum. I felt some of my burden lifted just reading post that made me know I am not losing my mind.

Short version of my family story - my husband was diag. at 42, but they believe he had since 35 - He is now between 6-13 years of the disease, his gfather died in the 70's with PD complications.

So... in the past six years we have had 2 DB surgeries, he is still working full time, and we are raising 2 teenagers, one graduating this Spring. I am in Grad school, finishing up in December. Our iife is so stressful from all aspects.

We are broke, from past med. bills, prescriptions, college cost, 2 teenagers, life and a mortgage. My husband works for the insurance and normally spends 60 hours a week doing a 40 hour job. He is severely depressed, sleeps when not working or complaining about everything.

I am finishing my grad work for more money in my job, my husband resents and thinks it is a waste of time. I really want him to go on disability, but know that I will have to do all the paperwork and logistics with no promise of him getting on disability.

My teen boys always have the look of what is going to be wrong today. I hate that their youth has such a cloud of stress, money problems, and fear of the unknown.

Finally, my husband tells me about 4 times a week he just wants to die or that he is going to divorce me. How much do I blame on PD, depression, or exhaustion?

I feel like there is no support from my family or his, except for them to hear all is well and move on. Really struggling and would love some advice - (We have both seen counselors, he is on psych meds, he refuses to go to church anymore)
Thanks for letting me vent and feel that I am not alone.

By LOHENGR1N On 2016.10.20 00:19
Hi Josie, welcome to the forum, glad you found Us. Going to counseling can be tough unless the counselor is well versed in P.D. ( I'd suggest even if one tells you they are to check out Their credentials and how many P.D. ers they have). Basically they seem to want to put the P.D.er back to "normal" however with the disease and our medication we cannot get back to normal pre-P.D. add a couple of DBS's to it and wow! I don't know if any suggestion was made to look up the stages of grieving, but I'd suggest copying the steps and keeping them handy because We really don't ever work through them all. We can go through some only to have disease progression or change in medication or in your case tweaking the voltage in the DBS and it knocks us back to work through the steps over again. Also we are fed through advertising many things that don't work on P.D. or don't work as well as they claim. Expectations are raised only to not be met. Then we can become depressed over it. Along with depression, P.D. and exhaustion, add in side-effects of our medication and it is confusing trying to sort out which to blame. Feel free to post on the main forum also not many check this board out that often. You found a great place to help you and your family along on this journey great people who will help any way they can. Again Welcome to the forum

By lurkingforacure On 2016.10.22 23:13
Hi Josie, I would second what Al said and add that we just had a thread about young onsetters with kids at home ibver on the main forum here. It is titled "Question for Daisy123" I think and several of us mom/caregivers chimed in. You may find it helpful.

You have so much on your plate I don't know how you cope. Thank you for sharing and welcome. I hope you will find comfort and support here:)


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