I remember when my mom first started having profound memory loss. Mom refused to acknowledge that she had an abnormal deficit. When we approached her on the topic, regardless how gently it was presented, mom would become angry.  She  insisted everyone had some memory issues as they grew older and hers was no different than any of her friends of similar age.  Because she rarely pushed back about anything, our family went along with her denial to keep the peace.

I have previously written about what a disservice we did to her and our family by allowing her to live in that state of denial.  In the end it complicated matters as we moved froward in the process, from planning for the type of care she may one day need to making sure her fiances could support that care. Like most families we addressed it as it came to pass and winged it the best we could with the resources we had available.

In hindsight, I am profoundly grateful for the limited planning my parents did prior to mothers memory loss, which included having long term care insurance. I am sure, like most people, they believed it would be enough to care for them, that when they pooled all their assets together it would give them a comfortable life, were either of them to need care. But like most people they had no idea the profound affect that having a disease like Alzheimer’s can have on a families finances.

I work with families every week in the same situation as mine. They find themselves with a family member who needs 24 hour care because of a memory problem.  Their greatest hope is to be able to provide that care at home until they are faced with the devastating news that Medicare, health insurance, etc., do not cover any of those expenses. It is all private pay and 24 hour care in your own home runs between $15,000 to $18,000 per month.

Even the most savvy financial planners rarely will have earned the income throughout their lifetime to be able save that kind of money, to provide 24 hour care at home. Those that did rarely can sustain those expenses month in and month out for a period of many years.  You would  have to be in the top five percent of income earners to be able to sustain the monthly expense that it takes to pay for 24-hour care at home.  It truly is a luxury for the very wealthy.

So the majority of families, like mine did, piece together the care with some paid help, but the lions share done by family. We move in with parents, have parents move in with us and every incarnation in between until families are forced through physical and financial exhaustion to place a loved one in a memory care home.

As I do this for a living, help place seniors into assisted living and board and care homes, I can tell you that rare is the moment that the families are happy about this day.  It is hard to see someone leave a home or a community they have loved for 40+ years and move into a home full of strangers. Harder still when the senior has a mental capacity that makes it difficult to understand the change.

So not to sound like all is lost, most dementia patients do very well in their new memory care homes.  They get good professional care, socialization and a safe a secure environment. But they are still with strangers and living their end of life days among them. I never lose sight of the fact that were our countries priorities on social services different, did we in fact look to funding programs for the elderly rather than other wasteful government programs, we could provide a great many services for elderly people to be able to keep them in their homes with family.

To be clear, for some having a senior family member with dementia cared for outside of the home is their salvation.  It takes away the daily sadness of witnessing the decline, the hectic pace and stress of people coming and going and brings back a sense of “normal” to their everyday lives. I pass no judgement and actually completely understand why for some it is truly a blessing for memory care homes and facilities to be available to them as an alternative. Not so for me.

I miss having my mother in our home every day. I miss her laugh, her nonsensical conversations, how she loved the animals, her new found joy at watching golf on TV and mom’s peaceful face as she closed her eyes against the sun while lounging on the back deck. I miss the warmth and comfort it gave me caring for her. I am disappointed I could not keep the promise that I would care for her at home with me until the day she died. It breaks my heart every time I go to see her.

However, I am grateful that my parents at least put some plans in place so that my mother has means for care in a memory care facility. Although not enough to keep her at home, she is one of the lucky ones who can afford care at a facility.  I meet many families with no financial resources so paying for any type of help is out of the question, at home or in a facility.  They are dependent on family and friends to fill in the gaps where professional care is needed, but care they will never be able to afford.

I am humbled to be able to help families trying to find hope and solutions to care for their loved one with dementia.  It is a job I truly love.  But I will never be satisfied with the limitations most families face in finding their ideal care scenario. People should get to choose to move to a care community or stay at home, not by necessity but because it is their choice.

I look forward to day when we live in a country that makes our elders, their care and their comfort a topic of the highest priority. I hope for a day when services are available for every family and senior citizen, so they can make the best choice for themselves, not the only choice available.