Lost & Found
On a Wednesday afternoon in June, my Dad walked in the door and hung up the car keys. He looked at Mom and said,
“Next week I think I will take a break”
Mom was disheartened. They always delivered Meals on Wheels on Wednesdays, but she knew to wait and see what happens. What happened next was Dad died 3 days later.
Hold on now, don’t go….This is not a tale of woe but a purpose put on pause. Since she did not get called up with Dad, something she just obviously thought would be the case, I mean…duh…they were a team, she was left to figure out a life without him. Many of us face life without someone we love at one point or another, if we are lucky, but it was the purpose that left an unexpected void. Together they delivered Meals on Wheels for 39 years. It was their date day. Together, including this final day, they delivered to 19 houses and went out for lunch at a favorite burger joint that also made delicious ice cream. They always got a cone to share. Love, for mom, was as much about service as it was about Dad. Love, for Dad, was Mom; so he happily drove the 19 house delivery route no matter how he felt. He knew her memory was gone and dementia had settled in. But he was able of mind and she of body so they soldiered on. How do we take care of one another? Her scale tipped a little heavy on care for others and a little light on care for herself. As I have come to learn over the past couple of months, mom was hard of hearing long before she got hearing aids. I discovered this as I unwittingly began using the same hand gestures as my father in communicating with her. Was I channeling Dad? I actually asked myself this question until it dawned on me she couldn’t hear him either. Which is probably how she planned on getting him to keep delivering meals…. She simply didn’t hear him say he needed a break, so they should get going or they would be late.
I have been criticized for putting mom in assisted living right before Christmas. Normally, I would let this go but there are a lot of people out there attempting elder care and I think it is actually important to talk about. Here and some things to consider if you are facing this:
Safety of the elder and the family. In our case, mom was waking up at 3:30 in the morning to either look for the ice cream hidden under the bed or trying to get out the back door to make sure the “man who was just here gets home ok in the dark.” Considering 3:30 is the devil’s hour and there is a murderer actually living down the street, not to mention 15 feet from my back door is a drop off into a creek that is a raging river in the winter, she was no longer safe.
Mom is strong willed and not necessarily inclined to do things in her own best interest, which includes her health and well being. She will lash out and you have to be careful when you touch her.
Here is a big one: AN ALZHEIMERS PATIENT IS NOT ON YOUR HOLIDAY CALENDAR. I openly admit I capitalized that because the stupidity of the critique is mind numbing. Mom celebrated several christmases this year and was wishing store clerks a happy belated holiday days before Christmas, because we did so much celebrating it surely must be over. At some point take emotion out of the situation and replace it with logic. She had the best holiday she had in years and has no concept of time. The guilt and emotion you may feel is on you. It is imaginary. You have done your best, let it go. It is ok. The actual day is figurative in love anyway. In all reality we should share the spirit of Christmas every day.
I recognized I no longer possessed the skill set to care for her. She needed more than any one person in any scenario can provide…..and she was bored.
Research a lot of centers or use an organization to help point you in the right direction. I used one called A Place for Mom. There is no cost to you for the service. They are compensated by the centers themselves. They also will help find funding if your family is in need.
6. Take the time to create a room for your loved one that is familiar. Since Mom showed up with only a doll suitcase we used the furniture from my home that she most thought of as hers. That did include my entire bedroom. While she went to my cousin’s house and made muffins and cookies, sat by the fire and helped out around her house for the day, superheroes helped break down the room at my house and move it. We shopped like mad people through Target. I think my daughter and I broke the record for the most purchased in the shortest amount of time by any women in America. It is too much fun to shop there but we were on a timeline. At the end of our set up day, the staff was coming in and absolutely in love with her space. I knew as we walked out past the dining room set with table cloths and a fire roaring in the tv room that she would be too. I picked her new home based on 2 things: Would I want to live here and can they best care for mom in the long term? The decline is rapid with patients like these and I do not want to move her again.
7. Self care: yes you count, and so does the rest of the family. It is easy for the needs of an ill person to come first and over run the needs of everyone else in the family, but they need you too. You need them. In my case, both my sons were coming to town and we deserved, after a long hard year, to have some focus time. We deserved laughter. After growing up with an ill sibling, I know first hand what is like to be the one made to compromise to the needs of the other. That has longstanding ramifications in any person’s life and I am sensitive to that in my own family. My children, although grown, still need and want their mother. All three had joyous celebratory news and they deserved their moment in the sun. I would not have been able to give them that if my attention was pulled away. I haven’t been my best. I was exhausted.
Yesterday we all went to visit Mom in her new home and before she saw us, I saw her. She was helping a lady walk down the hall and get situated in a chair. She made sure the woman was comfortable and had everything she needed. When Mom saw us she exclaimed joyfully to her new friends:
“This is my daughter!”
We all hugged and she eagerly walked us to her new room to show off the beautiful things she had and painstakingly talked us through the memory of each photo. She was thinking about dinner so we headed to the dining room to see if the menu was posted. It was not.
“Well….I guess skip-it is for dinner tonight!” And she shrugged and we walked on.
As we passed people in the hall, she greeted each one with a joy that said, “I see you.” She asked how each person was and had a compliment for all. I think Mom has stepped into her best final chapter, her purpose no longer on pause. She is back to finding ways to be helpful to others, she has a certain sense of autonomy once again. Mom does not see her illness. She does however see what others may need and how she can be helpful. She continues once again to lean into her own motto, “ If you aren’t here to help what are you here for?”
Outside her door is a shadow box filled with pictures of her filling bird feeders and her with Dad. There are figurines of angels kissing and a lighthouse behind that. I think it’s perfect. Shadow box seems an ill fitting term for a box of memories such as this. She is a lighthouse and dad is an angel………I told you, this is not a tale of woe, but a story of purpose lost and found.
Happy Holidays