I spent my childhood watching my mother care for my grandfather with dementia (he lived with us as a result), and my young adulthood watching her care for my grandmother. Now, working in technology and beginning to face the prospect of caring for my own aging parents, I’m hoping to spend some time while I have it (on parental leave) learning about what ultimately forces seniors to give up living independently. I’m interested in maybe turning my professional experience toward making some tools to help children to care for their parents.
What are/were the biggest factors for you in determining when your parent could no longer live alone?
Thanks!!!
First of all, my mother never wanted to leave her home and wanted me to promise her I would never put her in a nursing home. Unfortunately, I couldn't let my mom stay in her home no matter how badly she wanted to - believe me I tried every avenue but, I did not put her in a nursing home so I think that's a good compromise!
My parents were 40 years old when they had me, their only child/daughter. They were both married before and actually my mom had a daughter with her first husband. She was 15 years older than I was but, she never lived with us and passed away in 2007 at the age of 60. My dad was diabetic and was diagnosed with Pancreatic Cancer in 2004. Since I was married, I drove 45 minutes round trip, six days a week to help my 79 year old mom take care of him and I also brought hospice on board. After he died, I spent the next ten years looking out for my mom, brought her leftovers when I made dinners, took her places and spent time with her, did all the yardwork, helped her with the pool and called every single day to be sure she was ok. Especially, if I knew she had to drive somewhere so sometimes that required multiple calls within a day. Then one day, we both had our cars at the car dealer and were going to meet for lunch when we left. I got there first, she never arrived. To this day I'm not sure what happened. Another time in 2013, I called at the end of the day and there was no answer. I had a neighbor check to see if her car was there, it wasn't. I ended up getting the police involved as no one knew where she was. By 2014 she was diagnosed with Alzheimer's at the age of 89. I took her car keys away and moved her into an AL facility in early 2015, I just couldn't go on indefinitely with "zero" help. I'm not qualified to provide the type of care she needs. I was good at taking care of tasks like her mail/bills/handling her finances, shopping, taking her to appointments, making endless phone calls etc., but, I am not good at the medical side of caregiving especially for someone with Alzheimer's. She has five siblings left but, they all live in other states and aren't involved in her care and do not support my husband and I.
In April, she nearly died in her AL apartment from severe dehydration and contracting COVID. She survived but, was no longer able to walk, dress herself and wasn't eating. We moved her to a new facility into their memory care wing and she now qualified for hospice since she had lost 20 pounds, doesn't eat much and did not improve during her three-week stay at a physical therapy/rehab facility after she left the hospital.
I was 41 when this all began in 2004, I watched my life pass before my eyes never getting to do the things I wanted to do, vacations my husband and I didn't get to take and the resentment/anger set in. Now, I'll be 58 in October and the pandemic has changed how we live and what we can do along with both my husband and I now having our own health issues to deal with.
So the bottom line is I'm exhausted after going on 17 years of non-stop caregiving and doing it alone (except for my husband). One of her friend's who will be 80 and just had a heart attack has five children along with grandchildren. They all get along great and so they each take turns helping their mom. She tells me she will never have to live in a facility because her kids already have a plan for her. Two of them will have a separate room for her to stay when that time comes. Do I feel like she's bragging? Yes. Do I feel envious? Yes!