It's 9:30 PM in South Louisiana and I'm feeling very alone. Louis has had PD for many years but diagnosed and on meds for 3. Recently his dementia has gotten worse. We have 5 children who go above and beyond to help but they all work and have families and I hate to ask for help. Recently, I made an inappropriate comment to the oldest and it hurt her very, very much. I apologized and I hope our relationship can be repaired sooner than later. I think I have some gallbladder probs and will see a specialist. I hope that explains the physical problems and the reason I "snapped" that day. Once I posted about trying to find JOY in the midst of PD. I'm trying hard but I'm finding that being a caregiver is becoming more and more demanding. Thank you for listening. Do any of you caregivers out there experience periodical meltdowns?
Caregiver is falling apart!: It's 9:30 PM... - Cure Parkinson's
Caregiver is falling apart!
Just a theory but maybe you are not giving yourself a break. Do you have nurses , home helpers and others coming into your home to help look after him. When they are there do you leave for an hour or two. Does he go to a regular exercise class that you drop him off . Can you leave him alone for a couple hours.
OR are you the only one that can meet his need and you must be there all the time. Ask yourself if you are your own worst problem . If you drive yourself into the ground it is your own fault. Go to a PD support group meeting , talk to others. All the small jobs that somebody else can do get them off your back. If anyone does not like it tell them they can do it.
I suspect that you did not sign on to be a full time care giver and did not receive any training. Start putting your needs first and get some quality back into your life and rest, you need a lot more rest.
Louis refused to go to PT this am. I have a call into his therapist now. I am searching for ways to get away. I love Louis so much but it's so hard to see him decline!!! This morning, he was very, very disoriented. I contacted his neuro for help. The Beatles song really helped. If you are a Christian, please put my name on your list! Thank you!
"but I'm finding that being a caregiver is becoming more and more demanding"
It has been my experience with dementia (alzs) that the patient soon learns how to avoid any work, and does exactly what he wants . Others prepare his meals etc and he has no worries . Your old husband would not have done this to you but with Alzheimer or PD he feels little guilt about working you into the ground. You will notice that other professional care givers are much more demanding of him.
I think all full time caregivers occasionally need help. Being a full time caregiver can be a very stressful and thankless position. You need to find a way to get short breaks to see doctors and take care of your own issues. Talk to your children to see if they can occasionally help out for a couple of hours. If it is not a full day commitment they might be able to help. If not, see if you can hire a CNA to come by for a few hours at a time. There are also online and local organizations that help caregivers. I found this Louisiana website which has several links and phone numbers for caregiver support.
goea.louisiana.gov/index.cf...
I was a caregiver for my mother-in-law for about a year. I gave her a few simple chores to do so she could still feel like she was being useful. For example, I asked her to keep her toilet and sink clean. It wasn't as clean as I would do it, but she did what she could which also helped me. I also asked her for advice on how to prepare some of the meals she used to. She liked to tell me how to make her fried chicken and other dishes, while I pretended not to remember how to do it. The key is to make the patient feel like they are still useful.
I'd suggest main thing in the near future would be to make up with your eldest. Apologize, everyone makes mistakes and so will forgive, you don't need the worry of that on top of things.
She's bound to come around. God knows my daughter and I have had our ups and downs. We've both become quick to apologize and quick to forgive.
I wonder whether there might be a social service agency that can throw you a line -- have someone come out and spell you for a few hours a week? Whereabouts are you in Louisiana?
If you are interested, I run a closed Facebook group called Partners of People with Parkinson's.
Message me here or search for that group name on Facebook and I'll tell you more.
I'm interested
Here is the link to the Facebook site. If you apply I will message you and give you all the information you might need before joining.
It is available for anybody who lives with or who is a caregiver to somebody with Parkinson's
Thank you!
I just joined. This will be perfect for me! Thank you!
Can you message me your Fb name please. I'll look for you in the group.
I would imagine that most ceregivers experience meltdown, but most of them have no choice but to carry on.
Have you joined a support group? If so, is there nobody there able to help you? Some support groups have the means of helping caregivers.
My husband had PD so I fully understand. After I retired I volunteered to facilitate a Caregivers Support Group in my community. Check to see if there is a Parkinson's Foundation Chapter in your area. They have a support group that you can attend. I have several people who come each month and always walk away feeling better than when they arrived. We may not solve each other's problems but knowing you are not alone and being able to speak candidly really helps. We judge no one because at some point we have or will go through some of the same issues.
I hope you do not mind but I added you to my Prayer List.
Oh my gosh, I am so happy that you added me to your prayer list. I am a major believer in Intercessory prayer. Lots has happened to let me know that God was listening. I am meeting Thursday with a care group to hire someone for 3 hours a week. Also, I am accepting more and more that Louis has dementia. Thank you for the prayers. Please keep my name on your prayer list!
Yes. Meltdowns come often. If you have family to help that's a starting point. Getting help in the house even 1 day a week can feel so good. Remember you can't fill anyone else's cup if yours is empty. You are nearing a breaking point take care of yourself. I am also in the same position you are. I've learned that respite care however you can get it will keep you from going crazy. God bless you. I'm sending you a hug from one caregiver to another.
Thank you so much! I needed that hug!!!
Yes, as a caregiver for a heart patient, I have PD, and sometimes get short, when I don't mean to. I try my best not to, but once in a blue moon, it happens. In the earlier stages, it was a little easier to cope, but now, with symptoms on both sides etc., along with severe arthritis, I'm in pain a lot, so there are times when it's very difficult. I usually just try to ignore my own problems and help my wife, the best I can, because she has metabolic syndrome, on top of having had quadruple heart bypass surgery and several heart attacks over the years. I've had to really try hard not to get irritated around fellow close family members, because I don't want to cause serious rifts in family relationships and hurt feelings unintentionally. It's extremely difficult when you need help, because you just don't think you can do it all on your own, and then nobody offers or is there to help you, in your family, when you may need them the most. I do understand and I really can empathize with what you are going through! My best advice is to take one day at a time, ask your doctor for advice on who you can ask for help, and know that you are not alone.
Thank you so much!
Yes. Just yes. Most people who are not caregivers cannot understand how worn down, tired, and hopeless a caregiver can feel. How could they? I am not tied to the house. My husband is still able to do most things for himself, but PD comes with so much more than needing immediate physical care. Whether it is the medication or the PD, it feels like something trying happens every day. Over time, it takes a toll on you. I also am attentive to the needs of my mom, who is in a nursing home, and my daughter (who is pregnant with her 5th child) and her husband often need help with my grandchildren. I love them all with all my heart, but sometimes I just don't have the mental and emotional energy.
People say, "Give yourself a break." Give yourself a break? I need a month!
Amen! I understand! Thank you!
Yea my care giver my husband just dumped me at my daughter's for 2 months, she has 5 children
My husband can't cope with me being sick
Wish he could walk in my shoes for a few hrs
I'm not happy to have PD but I get up every morning & put one foot (shakey) in front or to the side if they won't move
I'm so sorry. You must feel abandoned. It's so very hard sometimes to see the one you love get sick. Care giving is a hard and at times thankless job. But the person with the disease is the one that suffers most. Because they are physically, mentally, emotionally at there weakest. I am the care giver for my husband and he's told me how terrible he feels about how our lives have become all about his disease. I hope you find peace and maybe trying to get help in the house, even for a day will make you feel empowered again.
What courage. Thank you!
Absolutely! So ashamed of myself after being inappropriate in talkig with my spouse with MS. It happens when I am exhausted. Your answer is to get help from family so you do not get exhausted.
Please, please never think that I think that my plight is worse than my husband's! I would never want to hurt you PD sufferers out there! If I sounded like a whiney wife who is waddling in self pity, I'm sorry!
you are not whining. Talking about it often helps relieve stress. Internalizing makes you overthink.
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rational thought, rose coloured glasses, hope, reality and sensitivity , truth and lies, consideration and planning , denial and fantasy .
