Nearly 18 years ago, after the successful treatment of her breast cancer, my mother moved down to Florida. For the first years she would always come up for 2 or 3 months during the warm weather and stay with one or the other of my siblings or me. But she would often leave abruptly, and to us unexpectedly. It seemed that in some respect she had moved as far away from us and anyone that she knew as she could, creating a new life that essentially didn't include us. Mom has a partner that lives next door. Seven years ago they met, fell in love and made a commitment of sorts, though did not get married. When it became available, he bought the trailer next to hers. Now they have a 'his and hers' arrangement, you know, instead of his and her rooms, its his and her trailers. It became evident about 5 years back that she had dementia, and that the road ahead would not be much fun. But their bond was strong enough that Al has hung in there.
A few years ago Mom stopped driving and cooking, so Al has done all the driving and cooking. For most of my Mom's life she's been a fantastic bread maker and it was the one thing she continued to do, if sporatically. However, when I visited last October it was evident that she had stopped doing even that. In other ways she seemed to be doing OK. She'd gotten smaller and frailer, but was basically happy and healthy. She'd developed some odd habits, such as dumpster diving, and hoarding plastic bags and lightly used napkins. She ate breakfast in her own kitchen, mostly just toast and coffee, and it appeared that she sometimes forgot to eat lunch. Al cooked dinner or they went out to eat so it seemed to be working and Mom had made it abundantly clear that she preferred to stay in her own home in Florida with Al next door for as long as possible.
Two weeks ago my sister and I flew down to visit. This time, things were different right from the start. There was virtually no food in Mom's refrigerator other than some shriveled grapefruit, dried up nubs of cheese and several containers of half eaten food or dessert brought home from eating out. Every surface including the kitchen table was completely covered with junk. Although she was glad to see us, every five minutes she would complain of tiredness and need to sit down, lay back and rest. She was also painfully thin and much frailer than when either of us had last visited. Over the last several years her skin has gotten thinner and blotchier. She bumps herself often, especially on her shins, and whenever she does she tears her skin requiring a trip to the emergency room since she has refused to see any doctor regularly. We were shocked when we saw her legs. Her shins were almost entirely dark brown, with black splotches and scabs here and there. They didn't seem to cause her pain, but she hid them in embarrassment.
My sister and I were unable to take it all in, at first. We were also starving, not having eaten on the plane (snacks now cost!) As soon as Al returned from his pinocle game with the car, we rushed out and bought lots of good healthy food and stocked Mom's fridge right up. (This was total confirmation that one should never go shopping when one is very hungry- we bought way too much!) We spent the rest of the afternoon and evening cleaning up her house and throwing lots of things out, when we weren't eating. We made sure that Mom had a healthy snack and augmented the dinner that Al had cooked with a roasted chicken and fresh green salad.
Late that night, after dozing off a couple of times, I was finally able to talk to my husband. He's a doctor. His take on things was that Mom's circulation wasn't good, mostly due to aging, but it seemed to him that she was also not getting enough to eat and therefore not enough nutrients were getting to her skin to allow it to heal properly. God knows what I dreamed that night, but when I awoke, it was with the clear sense that we had to take my mother home with us immediately to get some good medical advice, since there was no doctor familiar with her case in or near Tarpon Springs. (It did not seem like a good time to try to establish a new doctor patient relationship; over the years we have tried to hook her up to various local doctors without success). Plus, my husband is the best physician I know and has functioned as her doctor from when she used to live in the Philadelphia area and then when she would visit us with some regularity.
My sister concurred and we bought Mom a ticket and changed ours; we were on our way to Philadelphia by 3PM. I think both of us realized subconsciously that we were taking Mom home to be cared for and that there was a good chance she would not come back. But we convinced Mom to come because she really needed to see her doctor son-in-law to get help with her legs. I had only packed a few things for her to bring and we checked no baggage. We asked Al to use what he could from the overstocked fridge and took a little with us.
At first Mom was excited to see everyone, though she kept forgetting who she'd seen and where she was and who I am. She also kept asking why she was her and not in Florida. She also did not believe her doctor (my husband) when he said she had lost too much weight; 25 lbs, and that she was undernourished- or at least, not enough nutrients were getting to her skin to heal properly. She would scoff every time he said it or any of us repeated it and then would launch into her story about how the bruises were caused by her many years of playing field hockey and lacrosse. It was hard not to laugh at this, since if she ever played either of these sports it was in high school gym class 66 years ago!
We have been making sure that she takes her high potency vitamins and minerals, getting 3 delicious and nutritious meals a day. She is full of energy, when she is not napping, laughs and jokes a lot and seems to remember more often where she is, if not why she is here. She even got up and danced at her grandson's 18th birthday party! She has been a fabulous dancer all her life, but I hadn't seen (or heard of) her dancing in years. Its a very mixed bag, at least once a day and sometimes several times a day she lets it be known that she wants to go back home, but the rest of the time she seems to be happy and having a fuller life than she's had in recent years.
A few days ago I got the chance to make her a little picture album with captions. She had told me several times that she couldn't remember what my dad (her husband) looked like. Mostly I can remember to say to her that although she was married to him for 18 years, that she has lived for 46 years without him after he died so its no surprise she can't remember him. We spent a good hour going over the pictures together. She recognized most people right away since most of them are also lodged in her long term memory, not the short term which is so problematic. Occasionally she would go of on one of her favorite, factually incorrect stories (which I am gradually learning not to try and correct!) When we were finished- she mentioned that there was a restaurant that she like to go to, it had a salad bar that you could go back to as many times as you like. She went on about the food for a few more sentences and then said, "there is someone I used to go to this restaurant with all the time. What was his name?... who was that?..." I hesitated a moment and then asked, "Is it Al?" Her response was, "That doesn't ring a bell."
Later that same day, I noticed at supper that she was writing his name on her napkin. He has called 3 times in the past week, increasingly distraught and very angry at us for keeping her up here against her will. He really misses her. I am afraid that it is not quite reciprocal. Mom misses him, but more than him she misses her home and her sense of independence, which is only possible with Al/s support. Still it is a terrible dilemma. In the best of all worlds we would be supporting her 100% to live out her days in her own home, and I have no doubt that if she lived near any of her 5 children that would be possible, at least for a while longer. None of us is available to move down to Florida and none feel we can manage the situation from 1000 miles away.
So here I am pondering the fact that, in essence, I have kidnapped my mother and taken her away from her home to live in the bosom of her family. We all live in the city of Philadelphia, within a half hours drive of each other (3 of us live within an 8 block radius!) We want what is best for her and we think that means spending the last few years of her life with us as she slowly looses touch with 'reality'- but she is still quite capable of letting her wishes be known. If you ask her she will tell you, she wants to live in her beautiful little home on the water in Florida, next to Al.