I’m new to your blog, and very sorry to hear of your loss, so recent yet. I hope you are getting and giving yourself the support and care you now need in the aftermath and in handling the final loving caregiving after your mother’s departure.

Difficult and sad as it has been, I hope you are able to find solace as the distance grows between her passing and your life which keeps moving on in the memories and knowledge that you were able to share this important period of time with your mother, a once in a lifetime event that gives you new perspective. Death and dying is heartbreaking and humbling, but also reminds us to treasure time, life and those we love.

All of your insights are on point — thank you for sharing the challenges of making decisions or living with decisions with and for parents who need your help but need to be adults too, the challenge of balancing your life while giving care that you want to give, the deep sadness associated with everything you do as you give care, the gradual loss of the person you love so much, the chaotic unpredictability of “what next” and the lack of understanding in the work place (3 days bereavement time – how can that possibly be enough to take care of details, much less grieve?!) and the general world around us that doesn’t want to see, doesn’t want to hear, doesn’t want to think about death.

Most of all, thank you for your message reflecting the lack of support for the direct caregivers – including financial, especially if you’re not very rich or very poor – and the lack of support for the family in general (certainly your personal homelife was affected as well).

My father passed away June 6 a year ago. Being the child that lives long distance from the family, I watched and travelled and worried, for 20 years as my father slowly declined from early onset Parkinsons. First there was disability retirement, loss of productivity, loss of independence, then falls and a broken hip, brain surgery, loss of dignitiy and privacy, walkers, wheelchairs, feeding tubes, suction machines, Depends, hospital beds and velcro shoes, loss of mobility and speech, bouts of pneumonia, nursing home care and dementia, all the while lots of home health care aids and housekeepers assisting my mother who though peculiarly unsuited to the job took command and demanded their independence.

Six years before he passed I dropped my life and moved back home, only to find a mother that didn’t want to lose her finally empty nest as much as she wheedled for my help from a long distance, strife between family members about how to proceed and what needed to be done (and when), barriers to providing personal care to a parent of the opposite gender with dignity, lack of knowledge about negotiating the healthcare industry (and an industry it is) or the pressures that form decisions by and opinions of medical professionals that affect your life so personally, and financial worries for both daddy’s care and mother’s future.

Most of all I am shocked that others do not understand grieving. That “loss of a parent” is not understood (I overheard someone at the office ask someone else who had her losses much earlier – “Is it REALLY that hard to lose a parent?” “Um, yes!” ) I still find myself surprised by bouts of grief at unexpected moments though days go by when I don’t think about it.

Thank you for your blog, thank you for talking about what so few will talk about or think about. Thank you for doing something positive with your experience.

I have said it again and again…. 20 years on Wall Street, adopting two children overseas…. eldercare for two parents at the same time was by far the hardest most stressful thing I have ever done. And also like you, I don’t regret a single moment and would do it all again.

For me, the single worst moment of my life was stealing my dad’s car keys so he could not drive. I could not live with myself if he ever had gotten into a car accident and injured someone else. To do it again, I would have had a doctor, a local policeman or and Eldercare manager be the “mailman” delivering this news.

The second worse moment of my life was tricking my mother into going nursing home because it was too dangerous for her to live home with an aid. My mother had Alzheimer’s. A toddler you can put in a crib, a person with Alzheimer’s can burn a house down, eat broken glass, or wander out of the house and walk miles from home, just to name a few. Having said that it was hard, it was absoletely one of the best decisions we made. The nursing home was immaculately clean, the nurses were angels who were very, very kind, and my mom was completely safe.

My thoughts for anyone going through eldercare. Please try to take care of yourself. You can’t help anyone if you are on the verge of physical exhaustion. It is O.K. to get help and take a break.

Bonnie
P.S. Don’t forget to have your mom or dad retell you their favorite recipes. Oh we wish he had my dad’s clams casino recipe!

As you know, my own mother passed in late February from a 10+ year battle with Alzheimers. It was the most painful period. To watch a vibrant woman lose her life but still exist was like an outer body experience. I concur with your thoughts of eldercare. It is not until you go through it yourself that you understand the great need for quality elder care. I was fortunate to learn of http://www.myelderadvocate.com (Jack Halpern) after my mother’s passing. Jack is doing a great deal to try to improve things. Those interested in learning more should contact him.

Cali, it takes longer than you think to adjust to the change in life you and your family are experiencing. Do not over do, and do be prepared for emotional ups and downs even when you think you are better. With nearly 6 months of healing, it is only now that I can go through a day and think of my mom with happiness and not be overwhelmed with negative emotion.

Be sure to lean on others; people are very understanding.