How can I get my mother with Parkinson's Disease to see that being her caregiver isn't easy?

3 answers | Last updated: Sep 24, 2016
Smilebhappy asked...

My mom asked me to move here so i could help her she has parkinsens i have given up everything to come here i have no social life at all she dosent want me to work so i have very little money no support from anyone i wait on her hand and foot she dosent shower very often she sits at her computer and plays games for 13 hours every day she can be rude and dosent want to take her medicine she also spends hundreads of dollars on lottery tickets we were never close but i feel its my duty to take care of her and i always will she has a reverse mortage on her house so when she dies i will become homeless its not that i dont love her i do she has always been a kind giving person but since her husband died a few years ago things have gone down hill shes made it clear she wont go to a nursing home if she gets sicker or when shes older (shes 68) so i will be the one who will have to take care of her because she dosent want me to work i am afraid of what will happen to me i have 2 brothers but they live very far i dont know what to do im starting to feel guilty but she is making it hard for me here she is being hateful to me when i try to talk to her about it she says "im not hateful when have i been hateful?" but when shes watching tv she seems to relate to the people in the show she starts to cry and gets emotional i dont understand i wish she could relate to me the way she does the television actors she evedrops on all my phone conversations so its hard for me to even talk to her drs about her behavior does anyone have any advice? thank you


Expert Answers

Linda Adler is the director of Pathfinders Medical in Palo Alto, California. She has dedicated her professional life to helping patients and their families find optimal ways to deal with medical challenges. She has worked in all facets of the medical establishment, including primary care, research, and policy settings at UCSF, Stanford, and Kaiser Permanente. Her current focus at Pathfinders includes crisis management, mediation, and advocacy.

Hello smilebhappy,

I'm glad you reached out, as there are definitely good ways for you to improve your situation. While you are feeling overwhelmed at the moment, you'll be amazed at how much better things can be. The key is to break the challenges down into manageable steps, and then to carefully address each of them, one by one. Consider some of the following options.

Contact your local Parkinson's Association. Take a look at their website (www.parkinsons.org) and try to learn more about the disease and it's impact on patients and their loved ones. Then, use their resource finder and contact your local chapter. They may be able to suggest local services that you haven't considered, both for your mom and for you.

Attend your mom's doctor's appointments with her. This will give you an opportunity to ask questions of the medical team, and might prevent your mom from being so defensive about your discussing her situation. Be sure to tell the physician exactly what problems you're encountering, and gently but firmly let them know that you need help. They have lots of experience in dealing with the kind of anger your mom is exhibiting, and should be able to give you answers without upsetting her too much.

Also, you may want to consider getting a mental health evaluation for your mom. From what you described, she may not only be depressed, she may be exhibiting behavior changes due to her disease. Her doctor, or someone from the Parkinson's Association may be able to set this up; once completed, there may be medications or other treatments that will improve the situation.

Most important, consider hiring a caregiver. While you may think this is out of the question because of the associated expense, there are good options for bringing someone in to help without incurring too much financial burden. Is your mom receiving Medicaid? Check out the AARP website to educate yourself about low cost options: www.aarp.org.

As your mom's primary caregiver, you are clearly experiencing caregiver stress. As you've learned, no one can do this alone. You say that your brothers are far away: could you schedule a regular phone call with them so they can at least help you problem solve, even if they can't be there with you? Keep a list of questions to ask them when you talk to them next, and make sure that they participate in answering them. Next, please join a caregivers' group. You'd be amazed at how helpful it is to talk about your situation with others who are experiencing similar challenges. There are usually excellent local groups available: check them out through the Alzheimer's Association, your local senior center, your county mental health facility, or through the medical center. If you need more support than is available through a group, perhaps you'd consider finding a counselor who you can talk to?

Finally, try to keep in mind that you're not alone, and that there are great people and resources out there to help you. I know you'll find them!


Community Answers

Smilebhappy answered...

I wrote this a while ago and im happy to report things are getting better for my mom and me i had a talk with her and explained things to her about the way i was feeling used and taken for granted and i listened to her also and im happy to say things are better between us i also have met some friends thru my cousin and i am getting out of the house i think the lack of communication between us was the problem and i know there are resources out there to support me so thank you for your help i will continue to work on our relationship but will also take time for myself because if caregivers dont take care of ourself were not much good to anybody else thanks again


Rofsf answered...

Glad to hear it has gotten better. That would be very rough to deal with.