Parkinson's Support Group

Con't: was on the floor for 5 days. We almost lost her but I guess it just wasn't her time to go. I stayed at the ICU every night and was so glad because the night her pneumonia spiked I knew something was wrong. I am very cold blooded but Mom is not. So when I had 3 blankets on her I had the charge nurse come check her temperature and it was 103. They called in the lung specialist and he explained how weak she was that he thought we should put her on a respirator so it would help her breathe then the rest of her body could get stronger. He explained things so well to me that I felt very comfortable putting Mom on a respirator. Mom was in ICU for 2 weeks and then moved to the Rehab Unit for a couple months. We are still cleaning out the old apt. I was going after work and moving totes to storage til dark. I had told my kids that I wouldn't watch the grand kids that I couldn't watch the grand kids because we were trying to get Grandma moved. The only problem was that everyone came and got their free things but no one was available when Mom's things needed to be moved to storage or to her new apt. I was getting burned out, frustrated and upset that I was the only one doing anything. So I decided I needed to step back & take care of myself. I was in the hospital with chest pains which turned out to be pneumonia. The cardiologist asked if I had been lifting anything heavy? I told him I had been moving Mom for 2 week by myself. Fortunately I had pneumonia but I have to take another ct-scan the first week of July to make sure it was pneumonia and not a cist that will have to be removed. Yes I have one of those families were no one else helps or does anything for my mother. I have asked several times if I am an only child at the assisted living place. I tell them "No, I am just the child that helps out." That is why I am trying to step back. I am epileptic and have been seizure free for 12.5 years. I DO NOT want to break that streak!!! My sisters live close and do nothing for Mom & my brother lives in Kansas City. He needs to drive home more often since he really cleaned up: $11m car, frig, washer & dryer, large TV and stand. I think we are dealing with early stages of dementia. Mom's memory has really slipped since she fell in January. The future isn't going to get any better health wise for Mom & I don't think my siblings are going to change either about helping. They took their freebies and are out of here. Any ideas on how to get them to help to would be greatly appreciated. Plus Mom is in the stage where everything I say is incorrect but why didn't I come help her clean out the old apt. Like I mentioned before, I am stepping back so when I was at work Saturday and CV called to tell me that Mom feel on the top-head of her head. I asked if she was OK. They told me that they were sending her by ambulance to get checked out. I asked if she was bleeding and they said no which I was glad about so I told them that I wasn't going to leave work but keep me posted. I called the hospital a couple times and they had tests results by the doctor had to do that. Then I called after work to see how she was doing because we had dark clouds & was raining really hard. I called the hospital and they said her nurse and Mom was sent home also. I asked them to tell me that diagnosed Mom with. They said she had a back ache, she always has that because of her Parkinson's, no concussion,& no internal bleeding. My favorite uncle told me that one of his sisters might take of their brother now since they are both retired but he knows that it doesn't take much work plus Grandpa asked Tuf if

Sorry feel asleep on my last post. I was going to say that I was getting burned out because I was thought I was doing the right thing. Mom needed to get the things out of her old place so I was going after work and not watching my grand kids. Then Mom said no one asked you to help & she was right so now I am working my part time job, watching my grand kids, staying at home and I am much happier. I feel selfish because I am not helping Mom but when my 2 sisters work for the school system and don't help then why should I be there all the time. My uncle keeps telling me that I can't change them and I have always been the one to help Mom more. I was just doing too much for me. I am have epilepsy and have been seizure free for 12.5 years so I don't want to break that. Mom has been hiring a kid from our home town to help move things from the old place to the new apt. BUT, I also feel that I didn't get any credit for all the work that I did. I figure that is because of the early dementia. Please help me!

Amen. Sadly, caregiver is a very lonely role. Bad enough that so called "friends" abandon you, but family is a disgrace. Been there, still there. We have yet to receive any form of condolence, support or acknowledgement from Mom's gal pals of 30+ years, since she passed last September. Sickens me. Please know that I will be praying for your strength and try to find peace knowing that they will not change and their issues are between them and God. It helps a bit. Keep the faith.

I know what you're talking about. My husband and I have been abandoned by everyone in the community and at church. Whenever I run into a person from church outside and they ask how my husband is feeling I reply: "Ask him yourself. You can use the telephone or come and visit".

Barbara9 - my husband is 63 and he was diagnosed 10 years ago. He becomes psychotic when he takes increased medicine dosages. When he goes back to a low dose, he isn't psychotic, but he can hardly move. Is your husband on an increased dose or new medicine recently? Cutting back on the dosage might help. Psychosis is a common side effect of the medications. I feel so badly for you. Is your husband still working? Do you work out of the house? Please let me know if there's anything I can do.

Add your comment.A recent drug holiday in the hospital has husband on sinemet only for PD but Serequel and clonazepam at night to help with sleep and hallucinations and delusions. But that activity isn't limited to night time. Not sure that they help anything. Sleeps a lot during the day, conversation is loaded with misunderstandings, topics ar e pulled out of a twilight zone episode, Mobility much worse since drug holiday. Now uses walker in morning primarily and when he wakes at night, which is at least twice a night. Big changes in a short period of time.

My 86 year old mother lives with us and I am on disability for CFS. My Mother uses a walker but otherwise is quite capable of taking care of herself. I find having her with us balances out the PD psychosis.

Hospitalization is known (by doctors familiar with Parkinsons) to be extremely difficult for Parkinson's patients. The unfamiliar surroundings exacerbate the cognitive problems and the hospitals usually don't get the medication schedule right. Do you work? I know how you feel, like you have to do everything, bring his insurance card, write the list of his medications and on and on. If you husband is being admitted overnight, do yourself a favor and don't stay at the hospital overnight. Come home for a much-needed respite.

welcome dizzy! well, you always have us here for you, but I do understand the benefit of the human touch. When you go to a group, there is also the added bonus of getting a break from the caretaker role and refilling your personal tank, so to speak. Perhaps you could reach out within your own community and form your own group. Sure, they may not be dealing with Parkinson's, but another illness, so I'm sure that they too just want someone to listen. Maybe a local hospital, church, has outreach? Or your health care provider, Medicare, whatever, may arrange for a case worker or counselor to come to you? Just some thoughts. You are not alone, so don't worry. Keep the faith!

Hello,

Thank you for joining this online support group and sharing your experiences. I hear your concern about regarding dementia and Parkinson's. Here is a resource that may be helpful:

• Treatments to help prevent Parkinson's from effecting your mind

• Best Parkinson's Disease Website

I hope these resources are helpful and if I can direct to others, please let me know. Thanks

1. prepare a list of all automatic debits that come from your joint checking account.
2. Open up a checking account in your name only at another financial institution.
3. Notify the creditors on the automatic debits of the new account.

I don't know how you could do this without your husband knowing about it. Speak to an attorney in your state.

Are you gainfully employed? If so, have your paycheck automatically deposited to the new account.

Is your husband still working? Does he contribute to the bank account at issue?

go online and do all the banking. It is too much for my patient to comprehend

Exercise - that will help more than anything else. Good luck to you.

Hello tominpa,

Welcome to this online support group. It sounds like you are facing many transitions. I am glad you posted you question and your needs here. You can find resources regarding Parkinson's Disease through Caring.com's Parkinson's Disease Resource Center as well as our Lung Cancer/Disease Resource Center, and COPD Resource Center. Although these resources are broad you may find them helpful and be a good start. Caring.com is an information website therefore we encourage you to speak with a medical professional. Let me know if I can direct you to additional resources. Thanks.

There is no reason for you to feel guilty when you take time for yourself. Alzheimer's is a horrible experience for the family. Just as you feel that you are obligated to take care of your mother, you are obligated to take care of yourself. Is your mother eligible for Medicaid? That covers some in-home care that would provide relief to you. Check out your mother's health insurance plan for home care coverage. Even if it covers a few shifts per week, that would be relief to you. Good luck.

Hi Karley71, I'm sorry to hear about the situation you described -- thanks for reaching out for support! Here are some resources on Caring.com that you may find helpful...

• Deadly Emotions of Caregiving -- includes guilt. Leeza Gibbons also covers caregiver emotions in her "Caregiver Confessions" series on Caring.com: http://www.caring.com/articles/caregiver-confessions

• In addition to taking your daughter up on her offer, here are more ways to get a much-needed break from caregiving: 8 Types of Respite Care <this includes in-home care options

• Caregiver Stress and Burnout - Solution Center and Caregiver Wellness Strategies & Tips

Please do let us know if there's more we can suggest to support you. Thanks!