I once read a quote that said something like “so often we think something has changed when I’m fact only our perception of the situation has changed”. It has helped me over the years. It was really about relationships - and meant in the context of how you might at first absolutely adore some quirky thing your significant other does and then later, if you are breaking up, suddenly that trait is no longer cute and you literally can’t stand it. Really nothing changed - it’s still the same quirky expression, only your perception has changed. This simple concept has helped me many times to consciously choose to change my perception in order to no longer mind a situation. Simple and very powerful - it allows me to change how I’m feeling about a situation simply by using the power of my own brain. But ....I would never have thought to use this technique had I not read that quote.

I feel the same way. Although I don't think one of my children understands the full compass of the illness. When I get overwhelmed ( which is daily) I close my eyes, pray then nap. It is my only alone time. We have cried together and get so mad at each other. Then things even out for a while. Being the caregver means, you are the one who they take out their anger, frustration etc,on. It sucks and then sometimes they don't remember. I hate this disease, I hate what it has done to our marriage, his independence and the fact that his freinds don't come around. I have to stop now. Or I will be throwing things. I will walk it off later

I have always told my own kids that they cannot say “oh it couldn’t be worse this is just awful” because then shortly there after we will find out “oh yes....it actually can be worse and here is a taste of that”. I spend nearly all of my energy focused on what I CAN do and on identifying things I CAN change that I am also WILLING to change. I let the things go or accept what I cannot change or am unwilling to change. Those simple things help tremendously to stay positive. My dad is doing horrible by comparison to a normal healthy person but compared to his peer group (old guys who have had parkinsons for nearly 10 years and got their knee replaced after they started using a walker) he is doing absolutely amazing. Things that have helped him the most have been exercise, extremely healthy eating with lots of fish and fruits and veggies, minimum of 36 oz of water per day and more if possible, taking the amino acid n-acetyl-cysteine and being kept at home with family but included in all our outings. What has helped me the most is to have the right equipment and set up in my home to care for him by myself and to have a handicap van. He had aspiration pneumonia recently too but I caught it right away because I take his oxygen level using a finger sensor - u can get them at any drugstore. Thus I know his daily baseline and took him to the hospital very early since his oxygen level baseline changed. His doc said his peers are all 100% bed ridden and can no longer swallow. He can still stand using his own strength and he can even walk using a machine with a harness to keep him safe. But.... No matter how hard i work with him I do fear he may slowly get worse. I hope not - my wish for him is that he will be as able as possible for as long as possible in hopes he can leave earth peacefully without extended suffering. My dad is the sweetest and gentlest kind soul I have ever met. I will help him no matter what and I feel happy helping him. I have felt a little frustrated at times because there were other things I wanted to do. After thinking it over I realized I will never look back in the end and say “I sure am glad I got to go to or do (....fill in the blank) that one day instead of having that time being with those I love.” I feel not much matters in life beyond being with those you love and lifting others up as much as you can. Not going to lie - it’s hard many days but lots of things are hard and there are many worse things I could have endured in life but didn’t so I am grateful I didn’t get a worse assignment than I have gotten from the higher power who assigns is our life challenges.

Definitely pray for patience. It's very difficult seeing the transition. I also do everything, and some days i just need down time, especially since Phil is no longer mobile and bedridden. I know he feels like a burden, and I reassure him he's not. I cannot imagine being in his position. Makes me ashamed sometimes when I lose my patience. That happens mostly when I can't understand what he's saying, or calls me by someone else's name, or wants 3 things at a time. I also work 40 hours a week and am fortunate so far to work from home. Living in the desert, its sometimes hard to find resources, especially transportation that ins doesn't cover. He's bedbound on oxygen, so transport is costly. But, we do what we can, and even have a laugh occasionally. Even so, i am blessed to have had him in my life all these years.

Allow yourself to be human. You have a tough job! I was caregiver to my late husband who was sick for 3 years before his death in 1994 (not from Parkinson's). I felt bad when I felt just as you.. that I would be left alone at a young age; that we couldn't be enjoying what should have been our best years, etc. I was working and trying to take care of him and the house and finances and I resented it all and felt cheated.. I finally had to realize that I had to endure and only think of his comfort and if I resented the situation to think if the tables were turned. It was hard but I made it. Now I am the one who has Parkinsons and will need care in the future. I know how hard it is to be a caretaker... check into a support group and see if friends or family can get involved so you can get some respite from time to time. God Bless you during these trying times. regards, Linda.

P.S. My companion of 10 years had a stroke and is in a wheelchair and needs 24/7 care so I am back in a caregiver situation but his dtr lives with us now and takes the responsibility for him. Life has a way of throwing some crazy punches at us.