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By futureMD On 2009.07.28 00:16

After much thought, I finally thought I would join this forum to share my feeling with others we live a similar life like myself.

I am 22 years old and my father has had Parkinson's disease since I was 10 years old. Although he was diagnosed in 1997 at young onset (he was only 50), his condition started to truly worsen in 2004. That was the year I graduated high school, and I remember him quitting his job the month I started college.

Over the past 5 years, I think I have been able to cope reasonably well with my father's condition. However, I am currently in my second year of medical school and due to the demanding lifestyle and time that it entails, I have found it increasingly difficult to cope with this. I live 1.5 hrs from home and my mother is the primary caretaker. My dad does go to the adult day care center from 8am-2pm everyday, and then my mom takes care of him. She also works part-time so she can pay the bills. I come home for 3 weekends in a row, and then stay at school another 3 weekends, which are closer to our exams.

I have been totally independent for the past few years on school loans and so at the least, I think i have had to mature quickly for my age.

I am hoping for light at the end of the tunnel. Since I have been home for summer vacation, everday is a reminder of how hard my mother works and how difficult it is for her to take care of my dad. i feel pretty hopeless for the most part because i am going to be away from school for some time.

i am fortunate for a few close friends, but they all live pretty different lives than me, so i don't know who understands me.

i know this may sound totally immature, but i am single and truly wish i had that companion in my life to share my life's joys and in this case, struggles. i feel very lonely on this trek that very few understand. i sometimes wish i could just find that right person so i can have at least one thing to be happy about or one person always there for me. sometimes i just cry of the thought of how my childhood has been, or more so, how my 20s are being lived. it is quite unfortunate because i feel like i never had a dad. i am am ambitious person and always try to solve problems as they occur in my life.
this is one problem i feel hopeless about.

does anyone out there have any helpful thoughts?

i appreciate you reading this.

By Tara On 2009.07.28 04:50
Hi futureMD,

Welcome to the Lonely Hearts Club. My dad is 79 and just had to go into a nursing home because of a stroke which worsened his PD by ten times and I could no longer take care of him. Before that, I was his sole caregiver for four years.

I know how hard it is to balance having your own life and taking care of your father. The hard truth is that something has got to give -- neither you, your mother, or your father will live full lives as long as he is suffering and the two of you are trying to alleviate that. The best you and your mother can do is work to balance your own half-lives with his half-life.

I also know the feeling of being alone and wishing that I could have someone in my life to share all this with; but surprise, surprise, there are no takers.

You made the right choice to come to this forum. This is the time when you find out who your friends are. And they may turn out to be people you never see.

At least on this forum, you can find others who can totally relate to what you are going through, because we either have been there or are there right now. You can come here to vent all of your feelings and no one will judge you. Keep coming back. You won't regret it.

By WitsEnd On 2009.07.28 08:59

I understand the single life and parent with PD. I was born fairly late in my parents' life. They had given up on children by the time I arrived so I have no brothers or sisters either. I have some friends who are married and from time to time they debate whether I've got the better life or they. They like my independence--but it is not without sacrifices like being lonely. When my parents' health failed they both failed at once--and both having mental issues. Mom had a stroke and dad's PD dementia had also started. Although I had helped my parents most of my adult life (either by living with them and helping pay bills, them living with and me paying the bills or me sending them money), I suddenly found myself the sole decision maker without any advice from either parent. It was incredibly difficult and the last thing I expected.

The good news is that God gave me the skills I needed to deal with the situation. I also had some incredibly good friends and during the process got introduced to someone who stood by me. My significant other has been wonderful--but frankly he never completely understood although he meant well. I said something the other day and he said "I understand how hard it is to lose your parents"--and I said "no you don't". It's been since February that I lost dad and suddenly these tears sprang out of no where. He still has both his parents. He thinks he understands--but he don't.

Although I have a timeconsuming and fulfilling job, friends and a significant other, there's still a hole. There's a part of me who was a caregiver so long that I feel like I have lost my purpose now. I know that's silly, but that's the way it feels. Time will heal I am sure and the future may even include a wedding. A part of me is holding back on that though because life has been so incredibly painful for the past three years that I'm almost afraid to let myself be happy again.

Bottomline is welcome to the forum. I do understand how you feel about the single life and dealing with your parent's health problems including pd--been there. The important thing now is to make sure you keep balance in your life. Seek out friends. Develop some hobbies. Segregate some "you" time amid all the demands on your time. You will need a support network so friends are so very important. Don't hang your future on just one person who is going to make you feel good. Forgive them when they don't completely understand what you are going through. As crazy as it sounds with all the time commitments--focus on what you can do for other people. It will help pull you out of yourself. And when all else fails--put yourself in God's hands and pray. When you feel the most alone He is always there.

I too was the "problem solver"--often asked to solve problems for my parents way beyond my years even as a child. I took it hard that I couldn't solve my parents' medical problems. I also found myself grieving for "the good old days" when I was a child and didn't have responsibilities and parents didn't get incurably sick or fade away right in front of your eyes. No suffering--and no having to face my own mortality either. Realizing I am the next generation to go this path.

Hang in there and good luck...and if you ever need to just know where we are at....

By annwood On 2009.07.28 20:47
Welcome to our forum. We are always here for you.

My PD husband was a physician who was director of medical student education at the local university for 39 yrs. I say this because I know the stress and time committment that medical students have. I have no idea how you are even managing to give the time you have! It must be quite a struggle.

Although I don't know your family I would be willing to bet that your parents are tremendously proud of you and all that you have accomplished and that fact that you have done it all on your own. I doubt that they would be very happy if you threw all of that away to be of more help to them at this point in time. You are in a profession that will allow you to help them when you finish your training. There really isn't that much you could do if you were there.

Yes, it would be nice to have someone at your side but the other side of that coin is you would just have to stretch yourself that much further - med school, parents and a family of your own. At 22 you have a great many years ahead of you and time to find that perfect partner.

You have probably had enough psych at this point to understand that guilt is a useless emotion. Do what you can, stay in school (if that is what you truly want) and try to develop a social life that does not dwell on illness.

Stay with us and prayers.

By lynn On 2009.07.28 21:43
I care for my husband. We both feel as parents that children should be able to live their life. I feel that caring for my husband is my responsibility, not the childrens. I suspect your mother feels the same way. In fact, there are certain aspects of care that my husband is more comfortable having me do. Having said that I do feel strongly that adult children should be involved. From your post it is clear that you are very much involved. Continue your pursuits. Even though your dad is sick he wants you to accomplish your goals. We all regret the situations that pd causes but guilt is a useless feeling. I bet that your dad feels really good hearing about your studies. This gives him a break from the pd.

By tryinghard On 2009.08.01 22:21
Hi futureMD, I'm new to this forum but wanted to say you are not alone. Although I'm a bit older than you I'm taking care of my 85 year old dad who has had parkinsons for the last 20 years. He moved in with us a few years ago and it's not easy. Not at all. Keep doing what you're doing. Help your mom and keep up with your friends. It really is important for you to take time for yourself. Good luck!

By ihatepd On 2009.08.05 18:11
Hi futureMD,

I just wanted to let you know that you are not alone. My two daughters, ages 19 and 21, have been dealing with their dad's PD since they were 11 and 13. Many times they've expressed the feeling that they can't even remember what their dad was like before he was diagnosed with PD. While they've tried to be patient, they've been frustrated, angry and sometimes embarassed by what PD has done to their father. It's been a learning experience for all of us. We wish we could do more to help him. We wish we could change the situation and yes, we feel cheated out of the kind of relationships we all expected to have with him before PD came into his life. My daughters eagerly seek out opportunities to be with their friends as an escape from all of this and I hope you'll do the same. Is there a Parkinson's family support group near you? If so, you might meet someone else close to your age who's dealing with the same issues. Also, try looking back at old pictures of your dad when you were younger. They'll probably bring back memories and help you reconnect with the guy he used to be. I know it always helps me and my girls to look at old photos of my husband. We see the contrast between then and now, and gives us more empathy for him. All the best to you and your family!

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