I started a new job so I have had little time to post anything! I so much loved to write and keep track of the goings on in our lives – it helped to sort out my feelings and the process of learning and adjusting.
We had a little incident that happened this week that is stuck in my craw. The aunt that was moved into a new care home was “visited” by her former caregiver. At first glance, it actually sounds like a nice gesture. The caregiver had opened up her home to our aunt, yes for a price, but it seemed like such a nice arrangement at the time.
At first, life seemed so happy for our aunt. She settled in and started calling her caregiver her “daughter”. I should say that we are grateful that this was the case for quite awhile. Then it started. Our aunt’s cell phone would be taken away from her. We couldn’t have conversations unless the caregiver was home to be in on the conversation. During visits, extended family could not really detect anything was amiss.
To explain a little further, this caregiver rented out a couple of rooms in her house as the cost of living in that part of the country was pretty steep. Those that rented space were happy to have a room while they got on their feet enough to find a place of their own. It was through these folks that my sisters started to get a different story than what was being shown during visits. Though no one could really prove anything, some of the tenants were saying that the caregiver was abusive, abrasive and uncaring.
So, there was an element of surpise when my sisters found out that our aunt had been visited at her new home by this caregiver! It was during this visit that the former caregiver asked our aunt to sign a document. Exactly what it was, we have no idea.
So many unanswered questions for now, but we all need advocates. We all need to know to say “no” if we are not sure of something. Even the best of us – nevermind the elderly or those like our mother that is suffering from dementia – need trusted advisors to help make decisions. I feel like I am of sound mind and judgment, but still ask for help. It is never a sign of weakness to ask for help, but it is a sign of love to be one who helps. I wish my aunt had known this – that she is loved and can always ask.
Last week’s events included my California family moving our elderly aunt to another care home-where hopefully she will get a better level of care. At nearly 90 years of age, she is getting to the point of losing her discernment and her ability to truly care for and defend herself. It is a sad state for those of us who can see the deterioration. With no other family, my aunt is reliant on nieces and nephews to see to her care.
Enter two of the most incredible women I know – my sisters. Yes, and some amazing cousins – but the point of this post is what these folks are willing to do to make sure those who cared for us while we were growing up are cared for in return. I could not be there in person so one of my sisters put me on FaceTime while they sorted and cleaned through our aunt’s remaining earthly possessions.
For hours, they sorted and cleaned through piles of hoarded tissues and napkins, assorted bits of fancy jewelry, partially eaten snacks, carefully written notes that were tucked in between pages of books, coins, and a host of small things that could be easily tucked here and there. They also had to sort through clothing, bedding, and linen – the dirty with the clean, some unwashed and soiled beyond belief. They had to wear gloves and I am sure they probably should have worn masks.
Despite the unpleasant, but necessary chore, my sisters remained good-natured. Instead of grumbling and fussing, they chose levity. From the outside looking in, one may judge the hullabaloo, joking, and laughter as cruel, but it wasn’t. They did their best and our aunt is better off because of their selflessness, but so are our hearts. There was no begrudging undertones, no tallying of accounts, and no finger-pointing. They became my heroes that day because I’m not sure I could have done what they did.
My love and admiration for my sisters swells in my heart. They are my new heroes.
P.S. I have a pretty awesome brother-in-law too! All he would say is “Pshaw! – we do it for love“.
I am on Facebook with many of my friends – I am grateful to be able to connect even in a small way with those I have known over the last 40 years of raising a family, moving so many times, and crossing paths with truly wonderful people. For those that are my age and older, though the sharing is mainly positive – much of it has been about the struggles that naturally occur with aging and the passage of life and time.
I took a couple of psychology courses in college, but never quite understood some of the nuances of defining and marking stages. I suppose it was because at the time I was a young twenty-something and it was all academic information I needed to know for a test. Just like I wish someone would have mentored me through my mothering experience, I wish someone in the academic world would have stopped and gotten an older person in to simply share experience.
The other piece that is affecting us now but we did not correlate until now is the cultural influence on what is taking place in the lives of mom and her remaining siblings. My sisters and I did not grow up in a traditionally Filipino environment. It was very much mixed and who we are now is the product of being raised in a culture of mixed norms and mores.
Already the conflict is making itself evident in my relationships with my children. They don’t quite understand my stances or reasoning for why I do things. This and the fact that our lives don’t intersect often will create what my sisters and I are seeing in our relationship with our mother. We often misunderstand and misinterpret her values, what she is communicating, and how she communicates. Of course, this is just a blog so is not comprehensive. I am sure there are books out there that explain all this – that I need to read.
Maybe all this is why I feel a need to write it all down. Maybe that is why my sisters and I make it a priority to have an “us” time at least once a year without family – just us in a place where there is no laundry, dishes, or distractions. Maybe I want to do a better job of being cognizant so that I communicate, relate, and connect to those I love.
I see them on Facebook and in church and out in the community. People trying to connect, communicate, and relate. What do I want? I want to do a better job of connecting with mom in the time we have left where she is still able to share in her own way. Then, I want to do a better job of connecting with my family and it won’t be on social media using cryptic posts or tweets.
I had planned to write all about the happenings on our trip home and I still will, but with all the tragic events it is hard to even stop to write because what I have to say seems mundane and unimportant in comparison. With the technology of today it is truly amazing to feel like you are transported to the scenes flashing across big and small screens. Despite how paralyzing these events are, we still have to face what is in our own lives.
Our family has had much to contemplate these last couple of weeks. Our mother comes from a family of seven children. Out of the seven, five are still alive – all of them being at least 80 years old. The spouses of the two that passed on are also still living so because our family is fairly close, I will include them. Our whole family to include the seven (living), their children, the grandchildren and great-grandchildren ought to pause and just contemplate the enormity of this. As far as I know, of the 23 children born to these folks, 22 are alive and kicking and of course these “children” have had children – I am one of them and I am a grandmother!
But now, we are seeing their decline. I am not geographically close to our family, but I am feeling the pressure of this seemingly sudden change. I know in my heart and mind that the changes have been gradual, but no one really keeps track of the subtle shifts until it finally gets to a point that now we are the ones making changes.
An inevitable question has hounded my heart and mind – one always appears when I am faced with these types of thoughts. Here it is: How am I going to be different – how will contemplating this change me? Well, I need to spend more time with my siblings – value them – share my life with them. I want them to know I love them before I can’t tell them anymore. Busy is no excuse because they are family. I know this includes all the people God has blessed me with by putting them in my life.
We are very blessed in that each of these precious older siblings are surrounded by their families, but we are busy – too busy to stop and maybe bring them together for one last hug and kiss and let them say goodbye to each other. Just a thought and a dream.
Mom is now “home”. She is in the house she has lived in for the last 20 years – the place she knows the best, where all her things are. We made the trip a week and a half ago. My next few posts will be about the preparation for the trip and all the experiences we had in that short time.
My heart is stuck though. I have written about needing to hear words of affirmation from the woman I know of as my mother, but none will be forthcoming. I wanted her to miss me even a little. I wanted her to hug my arm or touch my face. No. Nothing.
Yet, I had an “aha” moment the night before I got on a plane to go back to my house. We were piled up on my sister’s bed just having a girl chat when she quipped, “I don’t want to live in California!” For the next few minutes, neither my sister or I could redirect her. Mom was adamant, argumentative, spouting nonsense, and downright angry. She got her geography mixed up and actually asked me, “Where do you think you got your brain?” – meaning where did I go to school. Her question had nothing to do with genetics.
Her rant was eye-opening. As we tried several times to redirect, I got a revelation. Mom was trying to tell me she loved me! She was trying to communicate her dismay over the fact that I was leaving. My mom could not find the words to say nor could she express the feelings roiling around in her heart. Though she was dismayed for a few minutes, I ended up understanding that she may not be able to say the words, but it was there – buried under her inability, almost disabled by her condition, but it was there. She loves me!
The last two days, mom has had difficulty walking. Since she can’t really reason, she attributes her current ailment to sleeping funny – right after she wakes up or the cold – right after she’s been outside or walking too much – after her daily jaunt. I had a couple of gentle talks with her to remind her that she has old bones. Her poor bones have carried her 84 years and they must be tired.
She actually listened quite intently and I let the thoughts sink in. Then, I reminded her that her eyes, ears, heart, and the rest of her body has served her very faithfully over the last 84 years. I have to admit that she mumbled and grumbled as she hobbled away, but I truly think she got the gist! Actually, I too got the message. My “old” bones have served me more than half a century and I must honor the service with rest and respect.
As one of the advocates for mom’s old bones, I am charged with making sure they get rest and respect. It is a delicate balance of movement interspersed with times of leisure and rest. Our old bones are not going to be as strong as they were when we were in our 20’s especially since we did not engage in regular exercise or good eating habits.
I got some mail the other day reminding me that I need a bone density scan. As a cancer survivor, I am on medication that affects my bones. I am developing a deep respect for the structure that holds me up and allows for mobility and movement.
I love the saying, “if the walls could speak”. I think it is the same with old bones (to include the rest of the body) – if her old bones could speak, what a story they would tell. As I watch mom every day, though I am focused on what is happening to her currently, I have to remember there is history in front of me – in those old bones.
Note: It has been a harrowing few days as we have family in Florida. The electricity had gone out during the storm and finally flickered back on late yesterday. It is hard to be so far away even though we would not be of much help, we might be of a little comfort especially to the children. Though the Bible says not to worry, it is hard not to dwell on thoughts that would be classified as worrying. Our thoughts and prayers are for those affected by the hurricanes, earthquakes, fires and other disasters around the world.
I am currently reading a book that seems totally unrelated to life with mom. In this book, the author speaks about current decisions, situations, circumstances reflecting the choices previously made. Let me give a simple example: someone who eats a healthy diet and exercises regularly in their twenties and thirties has a better chance at facing their forties and fifties in good health.
I don’t read copious amounts of research and literature on dementia, but I have tried to be a little more educated especially as I deal daily with life with mom. What I have overwhelmingly found are warnings – warnings to those of us who can read the research. Exercise. Eat well. Stay active. Don’t take things for granted. Who knew there is a correlation between high blood pressure, high cholesterol, and chronic conditions and dementia? There is little out there between medical white papers and blog type articles and much of what is said is repetitive. What I have learned unfortunately, does little good for the one on whose behalf I do the research. What I have learned is helping me become educated about the choices I am currently making that will have an impact on me in years to come.
Here is the other part: I regret not knowing the things I know now for mom’s sake. I have a list of shoulda, coulda, woulda items that span the last 10 years or so.
- I should have been more involved in mom’s health – keeping track of major events and researching the impact of such on her, keeping track of her daily regimen of diet, exercise, and medication, and being more tuned to her emotional state.
- I could have helped when she was first diagnosed because apparently, there are things one can do! From what I have read, we could have changed her diet, gotten her plugged in to a program, explained things to her while her executive functions were not totally a mess, and prepared ourselves for the changes that would inevitably come.
- I would have been more supportive of the sister in whose care mom has been these last 10 years. I am grateful that as a family, we are doing better to support each other, but I shoulda, coulda, woulda.
So, life with mom is taking a course that is irreversible. We can do little else but make sure she is taken care of. But, for those of you that will read these words, take care of yourselves – I know it has become a priority for me and my family.
I am with my mother virtually 7 days a week, 24 hours a day so I get many opportunities to observe her. I watch her while she eats. I watch her as she takes her walks. I watch her as she rides in the car. You get the idea.
As of this moment, I am also watching the progress of Hurricane Irma. We have family and friends in the great state of Florida so after the Hurricane Harvey results, we are worried. We can open our home up to anyone who needs a place, but we are so far away, it would not be feasible.
There is so much we don’t know. We have no idea how folks are really coping. What of all the people in care homes or hospitals? What of the ones who are elderly and far away from family? What will happen? There are so many questions, but I know this – there are efforts underway the likes of which I have no idea of. The scope of what is being mobilized literally takes an army and what about the families of that so called army? You get the idea.
In the same vein, mom has no idea what happens in order for her to be provided for. She has lost the ability to see past the few feet in front of her and in some cases she can’t even see that. This morning, in her haste to cross a street during our walk, I had to physically hold her back because of an oncoming car. Mom does not eat unless a plate is prepared and placed in front of her. She does not snack unless her snack basket is replenished. She does not take her medication unless I administer it.
Here is what I know she knows:
- How to do simple tasks like brushing her teeth or washing the dishes
- Some of her past in little tidbits that she strings together
- Enough to create conflict when she insists on her way
Here is what she doesn’t know:
- Her present – what day, time, date, season, or even when it is mealtime
- We work around her – even when we shop, she can’t make the connection between what we purchase and why
- She is protected and cared for tenderly and with great patience and love
My heart goes out to folks in situations like ours because like mom, there is so much we don’t know! All the research I have done has helped me personally cope and understand some of mom’s condition. I am grateful for the researchers, doctors, and people who have a mission to inform those like me who have no idea. For our family, we ultimately believe that God will take care of us and that He knows what we don’t know. Oh the peace that comes with knowing that.
The clock in the room is ticking. Were it not for the fact that I know I could leave when I wanted or I could choose an activity to do – like sewing or cooking or writing a blog post – the sound would drive me crazy. I have often wondered (not a good thing sometimes) whether we are guilty of pushing mom towards more forgetfulness. I know age plays a huge part because I can see in my own self a decreased ability to learn quickly or to get up from sitting on the floor – I am no spring chicken! Could there be a correlation between social inactivity and the deterioration of the mind? I have actually found lots of information, speculative as well as proven, concluding that physical inactivity leads to chronic illness, deterioration of the body (I want to say, “duh”), and deterioration of the mind as well as other things, but what about isolation and social inactivity?
Here is the question of the day: do we put mom in a care home or keep her at home? We have chosen thus far to keep her in familiar surroundings. She is in a clean house with the laundry all done and with the exception of some weeding, there is not much to do. Mom is in her room playing a game on her tablet. There is nothing to keep her engaged and it would be very difficult for me to keep her physically occupied for 8-10 hours a day. She can’t drive, cook, or even go out for a walk by herself. She won’t watch television because she can’t follow what people are saying and doing. So, we find ourselves in a dilemma of sorts and the guilt is simply overwhelming.
I have been in care homes where there is always activity – the TV is on and there are folks all around doing one thing or another. Most are bright and airy and there are people to talk to. As much as I take mom to the mall or out to run errands, there are hardly any times she is able to be social and we can’t stay at the mall all day. The social aspect of living is an incredible motivator to live!
There is also the financial burden of a care home. Truly, that plays a significant part of a decision like this, but we all still need to work so there is a cost no matter what we choose.
Today, I am exploring this option “out loud” for the first time and praying for my family as we will have to face this choice very soon. What is driving me to think about this is the daily sight of mom sitting alone playing on her tablet because I have run out of conversation and things for us to do. It is hard to put into words what we haven’t really allowed ourselves to think. Sure, all of us would love to win the lottery and retire to play the rest of our lives, but I am certain my choice of play would not be in a room where all I heard was the ticking of a clock.
Living with a person that has dementia is incredible from the standpoint of learning. The caregiver is constantly making adjustments because everyday is not the same and sometimes changes are made minute to minute. One of the most difficult challenges I have personally is how I speak, what I speak, and the attitude in which I say things.
Mom’s vocabulary is pretty much still the same so it becomes difficult when she can say words, but when she hears those very same words, she can’t process them. The other day, we were getting ready for a get-together with friends. I tried to plan the menu around the theme of simplicity for all our sakes, but there always is a bottleneck of activity at some point. So, I looked at mom who always wants to clean up before I am ready for her and said, “Don’t worry about it.” She laughed and told me why should she worry – that she doesn’t worry much any more. She could no more understood what I was saying than if I simply told her “hakuna matata”.
You have to know that I love idioms. I enjoy saying things that have a meaning beyond the normal use of each word. Well, can’t really use them any longer around mom! If I say, “piece of cake”, she will probably tell me she doesn’t like sweets or if I told her we aren’t “cutting corners”, she’ll tell me that the scissors aren’t out.
Here are some things I am learning and still having trouble putting into practice:
- Say what I mean in the plainest, simplest of words
- Make sure I am making eye contact – touching her arm sometimes works, but not always
- Time what I say – not too early so she’ll forget, but not too late or else we surely will be late!
- Give an allowance of time for what I am saying to sink in
- Be patient because sometimes it takes multiple tries to communicate anything at all
- Speak slowly because processing is delayed especially if I need to get feedback in return
- I will not have 100% success in getting understanding and that is okay
I am sure other people can add much more to this list. From last year to this year, this list has changed and in a few months it is likely to change again. I truly have a growing admiration and respect for all those who find themselves in a caregiving role and for those who dedicate their lives to help those like us.