I’m the fulltime caregiver for my husband with Parkinson's

I’m the fulltime caregiver for my husband with Parkinson’s, I’m emotionally drained and struggling to find joy in my own life.

I’m resenting my children for living their lives while I’m trapped here caring for him. I love him, I really do. But it’s a lot to deal with.

How do I find a sense of purpose and maintain my own well-being while caring for someone else?

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My heart goes out to you, it’s really tough being a caregiver full time. When my mom was ill, I took it upon myself to take care of her. I completely understand the frustration and the resentment you’re feeling.
You need to talk to your family and ask for help. Otherwise you’ll end up hating them. Ask for help, taking time for yourself and finding activities that you enjoy can help rejuvenate your spirit.

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when I was taking care of my father in law, i was so angry sometimes seeing everyone else living their life and I was there caring for him. So I agree with User1, finding moments for yourself is essential, even if it’s just for a few minutes to focus on your own thoughts and breathe.

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I’ve been there too - full time caregiver for my spouse who had dementia. It’s important to remember that it’s okay to feel the way you do. Communicate with your children or family members about your emotions and ask for their support, even if it’s just someone to talk to or assistance with some tasks. Asking for help doesn’t mean you’re not doing enough, it means that you recognize the need for self-care.

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DevotedDaughter, that’s a great point. Communication is key in situations like these. Sometimes just expressing your feelings and letting others know what you’re going through can lift a considerable weight off your shoulders. Also, seek professional help if you need to. There are therapists that deal specifically with caregiver stress.

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Another thing to consider is finding activities or hobbies that you can do within your home, especially if your husband’s condition makes it difficult for you to go out frequently. I started a gardening project during my caregiving days, and it brought a lot of joy and relaxation.

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Have you heard of respite care? It’s basically a daycare for older people. I found it helpful when i needed a breather. See if you have any nonprofits or government services in your area. I found that I felt better knowing that a professional was caring for my spouse and I could actually relax while i was away. You deserve to preserve your own well-being, so try not to feel guilty about seeking out support.

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I’m in the same situation with my precious Mama. I’m also disabled and have no help from anyone in the family.
Ofcourse everyone shows up to visit her if she’s in the hospital ( 5× in last 6 months) but never once has anyone offered to lend a hand, give me a little break or even just ask how I was doing.
I’m mad, hurt and put myself at the end of the priority list bcaus my Mama will always come 1st. I just don’t understand how people can be so heartless and not help a family member. I’m mentally exhausted,as well as physically, and in constant physical pain.

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Ugh Renee, so sorry to hear. It’s hard to have family just not be there at all.

Do you have any helping hands outside of your family?

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Home Health comes which I’m very thankful for. After reading all responses above I am going to check in on Medicaid.I did call about care for her, if on Medicaid, and in GA 2 yr waiting list for us.
So I just take a break, pray and do what I can after she’s cared for.

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Glad home health is coming. Are you saying there is a 2 yr waiting list for Medicaid?

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Oh no That’s a waiting list for assistance at home with Medicaid

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I am in the same boat as you, i have a daughter about 2 hours away and a son over 250 miles away. My daughter helped for awhile. She got mad because i decided to bring him back to our own home. we were staying with her for about 3 weeks. I could not stay there anymore. I was very uncomfortable being there. So now she does not even talk to me. I have had my husband home for 6 months now. he is on Hospice, so I get some help. It is still mainly up to me to take care of my husband by myself everyday. I get lonely and tired. We are both retired so that helps a little. I have no other responsibilities. I am 76 years old and my husband is 80. He is totally bedridden. I joined this group so I can get some support and just vent some times. Thank you for listening.

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I can’t speak to Parkinson’s, but have 12 yr’s experience caring for Alzheimer’s parents. Have a pow-wow with family members. One person cannot not do it alone, I guarantee you! If children can’t physically be present on a regular basis, they must help by providing regular car for the victim while you rejuvenate. If Parkinson’s Assoc can provide guidance, use them! If day care exists in your area for Parkinson’s, use it…wonderful for the victim and you. It is a family tragedy and the whole family needs to contribute and participate in appropriate ways! There is NO OPTION. Trust me!!!

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ibz1492, you’re absolutely right. The burden of caregiving should not fall on one person. Maggie, your strength and dedication to your husband is admirable. It’s really sad to hear about your daughter, but you shouldn’t feel guilty as you made the decision that was best for you both. For everyone here, it’s crucial to remember that it’s okay to ask for help and advocate for yourself. It’s not only about caring for your loved ones but also understanding the importance of self-care. There’s no shame in reaching out to local community services, caregiver support groups, friends or family. They may offer respite care or other types of assistance. And of course, this forum is always here for you to vent and share. We’re on this journey together.

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Hi Maggie, I’m so sorry to hear how difficult things have been for you. Being the sole caregiver, especially when the person is bedridden, is a huge task. It’s so important to try to find small moments for yourself, even if it’s a few quiet minutes with a cup of coffee in the morning or listening to a favorite song. I know reaching out to online communities like this one has been a great source of comfort for me during my caregiving journey. Never feel guilty about needing to vent or seek support. You’re not alone in this.

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Hi Maggie, it definately helps to know you are not alone. It may feel that way, and most times we are. I appreciate this forum to vent and get good ideas to handle the situation we are in. Routine is very important, little breathers are important and appreciating the little things also help for both. Thank you for all the recommendations. Bless you Maggie and all of you.

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Hi lovingdaughter, Maggie, and all in this thread. I too have been there - a solitary caregiver to my parents for many years. Moments of sorrow and frustration are understandable and it’s okay to express them. Remember, every rollercoaster has ups and downs, but life goes on. We all are doing our best to provide our loved ones with comfort and love, and that’s what matters the most. Take each day as it comes but also remember to care for yourself. There are caregiver support organizations that can provide guidance and temporary help. Look into these resources in your area. You’re never alone in this journey. Together, we can get through this.

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Thank you Maria! We are never alone.

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Thank you, everyone, for your generous words of advice and shared experiences. It indeed brings comfort knowing that I’m not alone in this. And you’re right, self-care is just as important when in this role. I will certainly look into getting professional help and delving into activities at home that I enjoy. Maggie, Renee, and everyone else sharing their experiences, I’m sending you love and positivity. Despite the hardships we face, each day we choose love over bitterness and strength over surrender. Remember, we are resilient caregivers. We are strong. And most importantly, we’re in this together.