After I moved back to San Diego to start my new job, the carefully crafted care plan we put together for my mother fell apart. There were no catastrophic events, but a few near misses that made my siblings and I uncomfortable enough to start creating a different plan for my mothers future care.

It started with a few missed shifts by the care givers, that the service did not catch until the following day. This meant my mom had a few evenings without her dinner and medications. Then a friend called to say he came across my mom walking in a neighborhood by her house that he knew was not her regular route. When he stopped to ask if she needed a ride home mom admitted she was lost and was relieved to have been “rescued”, as she put it.

That spurred a series of additional  caregiver shifts, new rules of engagement on what type of independence she would be allowed and before we knew it came the realization that no matter how much mom wanted to stay living in her own home, it was becoming unmanageable from afar. Moms safety was foremost in our minds and remotely monitoring that was becoming a real challenge.

A second consideration was financial. My mother is in perfect health, other than her dementia, and so we have to plan for her to live a long life. We are among the millions of families who care for an aging parent and worry that financially the care your parents deserve and saved for will match their life expectancy.

As a result we started researching assisted living facilities in the cities where we live (her children) and putting Mom on a wait list at a few we deemed a match. The first one that came available was going to be the city where she would move and as it happened, San Diego came open first. So I drove up to Carson City, packed my mother, some belongings and her dog into my truck. We headed out on a snowy Thanksgiving Day to drive her down to San Diego and Moms new life near me.

It is prudent here to review a few points that made us choose assisted living as opposed to having her move in with one of us. First, she will need 24/7 supervision. Her new surroundings will be foreign to her and her capacity to “learn” a new place and neighborhood is null. Although not a wanderer she is very quick to put a leash on Timmy and off she goes for a walk, unaware that she is not in a familiar place. So keeping eyes and ears on her is critical.

This type of care at home can be very expensive. So to offset expenses you have to assume you will have caregivers during the day but be doing the care duties in the evenings yourself, which in turn ties you to the house and the senior every hour you are not at your “real” job. It is the only way it can be financially feasible.

So our plan was to get mom into an assisted living apartment, and if she could tolerate it, have her half the time with me at our house in San Diego and the other half at her assisted living apartment. Well, like most plans created around my mother, and specifically for a mother with dementia, these plans changed more quickly than I would have ever expected.

Some back story for those of you who are not familiar with assisted living facilities.  Many have a side for those who can tolerate some independence and need varying levels of assistance/care and then an additional wing for people with severe memory issues.  The memory care wing is locked for the safety of the residents, many of whom wander or have behavior issues that make them unsuitable for the general population. It is heartbreaking to know there are no options for most on that wing. Many have just moved past the point of reality to even know who they are or where they live, so it works for most very well to keep them safe.

Because there are many on the memory care side of a facility that are low functioning, I knew that was not going to be an option for us with my mother. She is still very aware of her surroundings and has enough on board for a living condition like memory care to be very stressful and upsetting for her.  We felt, and were told by most facilities, that if we just pumped up the care plan on the assisted side she would fit in eventually and be fine.

The plan has always been to eventually move mom to memory care when the time came that she had retreated so far inside herself that she would not know the difference, but not any sooner than we had too.

So when my partner Kathy and I brought my Mom to the assisted living facility for them to do the assessment (to see if she was a fit), two things happened that put a new wrinkle into the plan.

As we sat with the nurse during the assessment my mother started to get the picture that we were talking about her living there. Her bottom lip started to tremble and she looked at me and said “Am I going to be moving here without you?” I looked at her gently and said “Only for part of the time mom, the rest of it you will be with me.” She started to cry in earnest and when the nurse tried to assure her she would be fine she pointed at me and said “No I won’t because she is trying to give me away!”

Arrows could not have pierced my heart with greater accuracy than that one comment. I reached for her, as now I had started crying, and tried to reassure her that I was not giving her away and she would still be with me. Mom yelled out for me not to touch her. It was awful. So there I sat crying, Kathy was crying and my mother was crying, none of us knowing how to make this look or feel any better than it did in that moment.

Finally after the dust settled we got up to leave and walk back to the car. As we were driving back to our house, I asked Mom what she was thinking.  She said “I am thinking that I will never be happy again.” Double arrow to the heart with a gut kick thrown in for good measure.

Things got worse the next day when the assisted living facility called to say they were concerned mom might be too advanced in her dementia, and although they were willing to try her on the assisted side, they felt she may pose a risk for wandering. Even with the extra money we were willing to pay they felt she may not be easily monitored  and that the memory side might be a better fit.

An additional assessment from a nurse from a second facility came to the same opinion. They said mom is an “In-betweener”, too with it for memory care to be comfortable for her and too advanced in her dementia to be trusted on the assisted living side.

At our home in San Diego I had already moved my home office, out into the toy hauler that I parked behind the gate on our side yard, to make room for Mom to stay with us. Because we live in an old San Diego neighborhood the houses have big lots with small houses….. our house is 825 square feet to be exact. It is also one of the more trendy and expensive areas of San Diego, so moving up to a bigger residence in this area is not feasible at this time.

The house we live in is lovely and the yard is big and it’s a perfect fit…for two people. We never imagined it would be a enough room to bring mom to live with us permanently. But life had other plans for us!

So here is the new plan…Mom is staying with us. I don’t know how long we will be able to manage or if we are crazy to even try, but for now it is working out pretty well. My hope for my mother to have more space and independence in her old age is lost on her.  She is very content to be with us and seems not to notice how small the space is, or if she does it seems enough for her for now

More moments with Marion will come from this new adventure and hopefully my life and my relationship will withstand the challenges we are sure to face.  For today I am grateful that I have a partner with a giving heart that is full of love and compassion, so that we can keep my mother close and most importantly, happy.