I am feeling overwhlemed with being a spouse of Parkinsos. My childen (ages 17/11) are suffering, Im a suffering, my hubby is suffering and I cant seem to make the right decisions to take off some of the presure of the life changes around us. The changes in our lives are just overwheming.
In the last 5 years, I have watched my family start to fall apart. My spouse was diagnoised with Parkisons in July '11 at the age of 49. He had two wrist surgerys. If only we had we known prior to his surgerys that he had a Parkinsons gene issue. The pain meds he took seemed to have accelerated his parkinsons. Although learning his disease process and the physical changes he has been enduring. It was a relief to me to at least know the challenge we were up against. Or so I thought.
My spouse is understandably angry. From his view, he has lost so much. His work changed his job and downsized his skill level from a baker of 25years to a gas attendant. Alhough he is still able to work, he is unhappy with the change.
He is also unhappy with me and the decisions I have had to make. I have had to take control of our finances. Our bills were so messed up. He felt he was paying everything ok, but his cognitive thinking has taken a big blow from this disease. I cant trust him with money or decisions involving money. Prior to his diagnois, he scared the family by his driving. So I started driving the family where we needed to go. My daughter also got her driver's licence around the time of his diagnois.
He is upset with my trust in her driving over his years of experience in driving. We've had some many arguements. He is now reluctant to tell me anything, cause I will take more things away. Which is not the case. He is still driving, just himself. He still has a job, just not theone he has done most of his career. He has threatened to run into a semi to end things. So now he gets upset with me, when he mentions something that could be dangerous, like driving in a snowstorm. Any concern I express is taken so negatively.
It doesn matter what I do or say, it's taken negative. My daughter 17, who has a giftedness of debating, argues with me because she doesnt feel right arguing with her dad.
My son has started pulling away and seeking refuge in his room and earplugs. I am running out of time to explain more, my son is intereste in my typing.
And free counseling just doesnt seem to be an option for my family. A few attempts to do EAP, hasnt worked well with our scheules. I work 2 part time jobs, the kids, the house.. I am exhausted physically and emotionally.
I just stood up fordaughter to a choir director who isnt getting along with a band director for a competition trip. And this director wanted another noterized medical from for her files and doesnt want to accept the band noterized medical form... The world just keeps throwing snares at me from all directions. Work is snippy with medical changes, short staff, lots of patiences and I just dont have the extra energy for all the changes and challenges.
Wearing down and no one to really talk to.. no one really understands th strains this disease has brought into our lives. My buddy, my partner in life doesnt want tospeak of the changes or these challenges. My girldfirends try, but not having experienced how it is.. cant understand.
Caregiving is not as easy and I feel like I am failing everyone I love the most. And we are just in the beginning of learning and adjusting stage.
Sugestions?? tips??
Craftcordmom.. the strong one, who doesnt feel she can be strong, or being strong at the right times.
