I am new to this forum and welcome any and all the advice I can get. I moved in with my Mom & Dad in 2009 to help take care of them as they aged and became in need of more assistance. My Dad passed away in 2013 at the age of 82 from a massive heart attack. That leaves me to care for my Mom who was diagnosed in 2005 with Parkinson's disease. She started showing signs and was diagnosed with Parkinson's Dementia in 2014. It has been a steady decline since then. She is now 85 years old and is in late Stage 4 of Parkinson's and has lost 32 pounds (unintentionally) in the past 12 months. She has been hospitalized 3 times in the past 2 years for severe UTIs/dehydration because I can't get her to drink enough water. I have a 40 ounce pitcher on the counter and tell her she needs to drink what's in the pitcher every day. She acknowledges that she understands, then just completely "forgets". She has about 3 good hours in the late morning/early afternoon, but her mood/behavior goes down hill after about 3pm. She is mean-spirited, negative, stubborn, argumentative, narcissistic, passive/agressive, but is still my Mother. She is at a stage where she can't be left alone even for an hour (has attempted to call the police because she isn't good with time anymore and thought I was gone longer than 2 hours ... I was only gone for 1 hour). I have family and friends who help out and are a great support for me, but I am getting burnt-out. I am fearful that the amount of frustration caused by my Mother will eventually push my other family and friends away. Right now my main concern is I am worried about her unintentional weight loss and dealing with her constant negative, passive/aggressive behavior. Any ideas and suggestions will be very much appreciated.
Try to remember she is not doing things on purpose. Her brain is no longer functioning like an adult brain. I compare my mom to a child. Right now, your mom is probably like a kindergartner. Possibly younger. My mom is like a 12 month old on good days, an infant on bad days. You have the crazy task of treating them like an adult and a baby at the same time.
You need to have more help. See if family members will take over on a regular basis so you can run errands, get groceries, whatever. In my family, we have regular 12 hour shifts so we can make sure mom is never left alone.
As for UTIs, it's a constant battle. Give you mom whatever she likes. If not plain water, then ice water, or juice, or iced tea, or even just add some flavor drops. Figure out what she likes. You can't expect her to understand that she needs to drink a certain anount. You just need to make sure she always has water in front of her. We used to use a fancy thermal cup with a straw but mom can't always remember how to use a straw now, so we just use small cups and refill constantly.
Keep plenty of high calorie snacks on hand. When mom's tremors were bad, she lost 60 pounds. We now give her all the ice cream she wants. Plus cookies, nuts, fruit, yogurt, chips, whatever she likes. Her weight is pretty stable at 110 pounds. Still too thin for someone 5'10", but she's not losing any more.
And last but far from least, schedule time for yourself. Get a family member, friend, sitter, and take a couple of hours every week for you to just be you. You can't take care of mom if you aren't taking care of yourself.
Two final hints, I separate mom from her disease. When mom is difficult, it isn't her, it's that mean old Mr Parkinson again. And I have a "bucket list" of things I will do when Mom kicks the bucket. It's not morbid, it's a reminder that you won't be doing this forever.
I was resistant for a long time to "serve" Mom in her bedrm as I wanted her to get up & walk around. Her whole life being of Finnish descent she and her friends would enjoy "afternoon tea or coffee." One day out of the blue I asked her if she wanted her afternoon tea to which she excitedly replied " O yes please...that would be nice!' Purely by accident I discovered how to get her to consume 2 cups of tea "on her terms bedside." Took me 2 yrs to figure this out!
I sense tho that the crisis is with you right now. Get those family & friends to help out more NOW. You are SO lucky to have them.....USE them ..they are your lifeline. I suspect you have sugar coated things to them as I did for a long time. It's a "protective mechanism" of your Mom.... so natural to want to do it all..of course you can't & great that you have come to that realization as your Moms care is escalating. She is so lucky to have you....you are her world...
Let helpful family and friends (or just start with who ever is closest to you) know how you are @ the end of your rope & would so much appreciate an afternoon off. You might start crying as you feel the immediate release ...just go with it.
You must get away for an entire afternoon this week. I know you are mentally & physically exhausted so don't plan anything taxing for your "time out." Even if it's just going to the park..laying on the grass...watching the clouds go bye like you did as a kid yourself...and letting it all go. I did just that a few days ago and it was so therapeutic....
Good luck my dear....you are doing a great job.....xxxooo
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