Midlife realities with elderly parents

It has been awhile since I have written in the site, that was titled TX Travel Girl Tales. I have been posting more in the other site txtravelgirl.wordpress.com for my more recent living in Austin and my Airstream. I am going to use this site to talk more about midlife with emphasis on putting down the experience I now find myself in with my mother who has been diagnosed with dementia. A place maybe I can sort out these conflicting emotions and relate the situation with my mother. I want to be respectful of her but want to share about this because I know I am not alone. I am not the only midlife aged daughter or son who is dealing with a parent or two with dementia in some form.

My father passed away in 2013 suddenly just a few weeks shy of his 77th birthday. He was sharp minded but “weak” hearted as it turned out on that Fathers’ Day Sunday. Isn’t that swell? Losing my beloved father on that particular day, just wow, even now.

My mother has been a good church going christian woman my whole life. Over the past few years, especially in last 3 or so my brothers and I noticed a change. It was at first the repeating things, not all the time. Somewhat to be expected being older and with 3 adult children who lived in different places understandable not always sure who she told what to whom. When I found myself having to divorce in 2015, I moved to my parents home. Returning to live with my mother was interesting. We both got a kick out of it actually. And in the beginning it was fun in a way. We are nothing alike but she welcomed someone being in the house. I welcomed the sanctuary. My brothers welcomed the idea of me being there to see how she was doing. At that point I didn’t question my mother’s mind, not anymore than I had all along given that she has a very Pollyanna ish view of the world, rosy and cheerful in most things. Smiling and a simple way of going through life fairly unruffled. I travel for work and otherwise too so we didn’t have to spend enough time to be on top of each other’s nerves.

I remember distinctly when my aunt, mother’s sister, was in constant contact as her husband was in the hospital. They were talking everyday. One evening about late 2015 or early 2016, my mother was speaking to her sister for about 30 minutes. When she came to the table she was very emotional, unusual for her. She said that my aunt caught her up on the latest with her husband, they talked some more and at the end of the call she asked “now did I tell you about J?” As if it was the first time they had spoken. This wasn’t the first time had happened. As turned out she probably had been undiagnosed with dementia for a couple of years. As of today she is in assisted living in Houston, along with her husband who now also has diminished mental capacity. My cousin who is my age is now the primary caregiver or guardian of sorts for her parents. We are in a similar boat now.

Over two years ago, I started to notice more that my mother was repeating things but it wasn’t consistent. We had some challenges with her getting blood pressure in check, big swings that had me in the ER with her late at night on several occasions. Initially I wondered if the BP issues were causing some of the problems. I think that was an inadvertent distraction to the situation developing. Within the past 12 months we have seen a faster decline, the not recognizing people she should right away, grasping for names, personality changes where her sunny disposition has become more agitated and caustic. The biggest most frightening was the realization that she had been taken advantage of by a relative who had repeatedly asked for money, and Mother had lost her ability to analyze the request. Lost the ability to recognize the value of the amounts and forgotten she had just given money to this person recently. It was a dramatic situation that we had not fully known until about a year into the problem. At that point we took action, as both brothers are attorneys and drafted a letter to said despicable relative promising legal action if she contacted Mother again. The cat was out of the bag, so far she has not tried because she knows we are onto her. Not before a considerable sum was gone.

This sort of thing with money handling has been the scariest manifestation of the loss of her mental faculties. It is tragic and infuriating. There is another relative who is also trying to pull stuff. One who is also of diminished mental with his own dementia. He is more of a problem right now and we are going to have to take further measures to protect my mother.

What is sad though is how she is not the mother I have known all my life. There have been outbursts of ugly proportions, hurling ugly things my way when I expressed concern and anger over the previous relative’s demands for money. While I admit I could have handled my emotions better it became apparent in those situations my mother had changed. She turned on us vs the others who are not close family even though relatives. My life long relationship has been one of vexation over time. Mothers and daughters are not always happy relationships. Ours was not close. Loving in ways but she was not my best friend, she was not my closest confidante. She was however a wonderful grandmother to my children and that of my brothers. Disciplinarian but loving. Mother becoming someone I don’t “recognize” is the worst.

One of the starkest examples was over Thanksgiving this past year. My BFW Lori and her family came to mother’s house for the holiday (more on BFW can be found in blog post on site txtravelgirl.wordpress.com) Her son was getting married in Austin over the weekend. Over the years when I lived in Lubbock we often spent holidays with each other’s family, Lori is a great hostess and cook, I am a great and appreciative guest! We had her kids and their guests, my children, one of my brothers M and his kids. All told about 15 people. My mother has never been shy and will visit with anyone. There was a moment that my brother and I both caught where we looked over and saw our mom standing near her bedroom doorway that looks into the living room. She was standing there and her expression was one of bewilderment. She looked overwhelmed and as if she knew none of the people in the room. We looked at each other and at the same time were asking if we were seeing the same thing. It was sad and surprising all at once.

We had talked about getting her an appointment with a neurologist working with memory loss and finally were able to get one set for first of February. Brother L went with her to see the doctor. After doing a few tests in the office it was decided she definitely had dementia. Described as early stages although L said it is more moderate given the doctor doesn’t know all of the extent of the things we have seen. She tried two medications to slow progression and in both instances she took herself off citing dizziness. Arguments ensue, frustrations on all fronts and as I discussed with L one day he said he didn’t care if she took or not. We can’t reverse what is lost.

It hit me square. We cannot undo anything. If she won’t take it and we can’t make her, then we will just have to deal with it best we can. We had talked to her about the need for the first visit to the doctor, get a baseline, see what we were officially dealing with and now we have that. Next visit will have to be about strategies going forward. What to expect, what to plan for and when.

In the interim, my mother has forgotten the name of her friend who we were talking to a couple minutes before and was staying in the next bedroom. She couldn’t recall if my father’s brother’s wife had ever met her longtime close friend. In fact they have all traveled together and my uncle and his wife have been married for at least 25 years. I was thrown by that question. As I am thrown each time it happens. One would think i might be use to this now but I am not.

Last week I took her out of town with me when I was working in a city where one of her friend’s lives. This woman had been diagnosed with cancer a couple years before and we were not sure how long she had left. I had taken my mom with me to visit a few times in the past couple of years and this time my thought was, the friend might still have some more time but how much does my mother have to truly remember her friend? What was also sad for me was on the trip was the car ride to and from the visit. She has always been talkative. There is rarely quiet moment. On the drive down she didn’t say much at all. I found a podcast that didn’t have expletives and we listened to one on This American Life. On the way back we listened to music. There were about 5-6 hours in the car that day and if there was a total hour of conversation of any kind I would be surprised.

All these situations and moments all result in the same thing. My mother is not the mother I have known for most of my 55 years. My brother said to me one day, “just wait till she turns to you and says, have I told you about my daughter Molly?” My brothers and I share dark humor and so we have to find something to laugh even while we tear up.

Dementia, in all its forms, is awful. Who doesn’t know this? I have friends who have dealt with this with their own families. The fact that one of my mother’s sisters and her brother have some form, that her parents had as well is not comforting to us. On our father’s side there isn’t any that we are aware of and we have to hope that gene pool wins out for us. It is scary to think about. In the meantime we have to do what we can for our mom. Unfortunately it is looking like we will have to use her memory against her to protect her which is so upsetting but we have already had to with these people who are trying to take advantage of her.

This is our journey. I want to write about this, the hard and the moments we hope to cherish going forward.