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Topic Reality Sets In Go to previous topic Go to next topic Go to higher level

By TwiceCursed On 2016.05.24 22:38
Posted in YOPD forum, but Posting here too since it is directed mostly to caregivers....My spouse was diagnosed with YOPD at 49, so we are 7 years into this. Struggling with med amounts and timing (typical I'm finding out) and ever increasing debilitation, no state of denial for either of us, but today I reacted to a fall and the resulting spilt milk (no expression, literally, milk was everywhere) with impatience and little regard for whether he was hurt. I'm just pissed off at PD. It is not his fault, but I know it is going to get worse, not better. Mostly his pride was hurt, but it sent me into a head shaking "I can't do this, I can't do this" state of see "Twice Cursed" is in reference to growing up with a cerebral palsy sibling - I had to share a room with her, I had to help her all the time with everything, including pouring her milk because she would spill it. And the only way I could get away from her was to grow up and leave home. Now I am facing being a caregiver again and after 30 years of raising children (yes, they were spread out, and still supporting one in college) I am TIRED. I am a breast cancer survivor and don't know if I can keep caring for others (maybe this is why I got breast cancer? - did not take care of myself?). Sounds like a pity party I know, but I just found this forum and hoping for some sanity, some advice, and anything to help me find courage and patience. I just don't know that I can/will survive 20 or more years of PD caregiving. Options???

By LOHENGR1N On 2016.05.25 00:56
Hi Twice, welcome to the forum! You have found a great place filled with people who care and will do all in their power to help if they can. I can see where you would be overwhelmed with your history. If I can offer some advice? Don't take over too much too soon let him do as much as he can for as long as he can even if you could do it faster. The longer We can function the better we feel about ourselves and the less of a burden we are on our caregivers. Going along with that If we are struggling with something but making headway try not to hang in the background looking worried or sad. If you can't do that go into another room because we can see the worry in your eyes and we don't want you worried. Keep a steps to grieving page bookmarked or printed out and keep it handy it will help you recognize how or why you are feeling things and remind you it is a normal feeling or action and everyone feels it. You're not awful or bad for the feelings that arise we all grieve over things as simple as spilled mike at times. With P.D. we grieve often and may skip over a step or leap backward to earlier steps and we never finish the process. And don't let that get you down because it is normal with P.D. to grieve like that. Try as much as possible to live in the now and not linger on what might have been. Because the now is all any of us have if you think about it when you're 40 and make plans to retire and live at the beach you're still 40 and can't instantly become 65 and living on a beach we all still have to live in the now, today. Much happens along the way from 40 to 65 that stop the best laid plans so live in the now as much as you can or else depression will mess with you making you lament about the future. Well I better quit for now hope this helped a little. Again welcome to the forum I'm Al, a young onset many many years ago. Others will add their sage advice to help you take care, best of luck and hang in there

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