Asking for help as the caregiver (husband 20 yrs with Parkinson's)

Your posts resonate with me! We are Christians also and have strong faith in God. We wouldn't have got this far without Him. Do you think sometimes you actually feel guilty because you feel you should be able to keep going and be strong because of your faith, yet we are human and sometimes things just do get very heavy? I am 32 years old, been caring for my husband who has a degenerative neurological condition for 10 years. I grieve the loss of a normal relationship, a well spouse and a well father to our 2 girls. I feel guilty because I still have him, but it is no longer a reciprocal marriage and I do crave connection, converstion and warmth

@hopeful33250 I'm glad it hellped. I have to admit that I am now addicted to findint the next interesting coloring book.

@raebaby
I love this idea! Finding an activity that is pleasurable and allows us a break from our current circumstances is great. Lots of people knit, crochet, read, bake, cook, or involve themselves in other pleasant activities. When I feel a need to escape, I love to bake something with lots of cinnamon. The activity of baking, as well as the smell of cinnamon, is totally relaxing for me.

I appreciate your sharing this!

@cmdw2600 so nice of you to post. I am doing the best I can. we are also having marriage problems on top of it, he has some mild dementia and has shouting outbursts at me. This needs to stop. He is seeing psychiatry this week so Lord help him. there are so many distressing things about Parkinson's!

When my husband raged around me, I started using gel pens and intricate coloring books. I felt as I used to as a kid when I oil painted. The remembered flow of the paint took me to a zen space and I survived him rather than having a stroke as I feared I would have.

@mira98 so sorry for both of you. This is a hard disease for each of you. My heart goes out to you. I pray you find support both mentally and physically. My son and his wife have been a godsend to us. We have just purchased a home with a generational suite for us to live in . There is a door separating our living space from theirs. Help is just a yell away. God is good. He is there to help you too. You and your husband will be in my prayers. Hugs.

Hello @mira98

I'm so sorry to hear of your difficult situation. It is important for you to be safe and for your husband to be cared for.

Have you looked into alternative living situations for your husband? What type of support do you have?

@mira98
Like you, I am grieving the gradual loss of my husband. He was also diagnosed almost 10 years ago. Our world has become small. We have a son who is very helpful and lives nearby but the day to day living makes me sad (him too, of course). It’s the first thing I think of when I wake up.

I try meditation, deep breathing, support groups, etc., but there’s only so much that these aids can do. Best wishes to you and all on this forum. Cindy