Almost two years ago, I made a providential trip to see mom in California. I had shared with a couple of close friends my fears – mostly fear of the unknown. One of them who had gone through similar circumstances had suggested that we take mom to get a teddy bear or baby doll. It is a controversial issue to use baby doll therapy for dementia patients as folks find it distressing that our loved ones seemingly regress to a childlike state as they coddle and care for a doll. I haven’t really tried it except to say we tried the teddy bear.
Despite the protests from family, they acquiesced and took us to a Build-a-Bear workshop in a nearby mall. No one really knew how mom would react to going into a toy store. I personally love stuffed animals so would not take offense if someone gave me a gift card or treated me to such a place. But mom never really took to toys – it could be that her childhood was during a time of war so she and her family never had anything extra to include dolls or play things.
Mom walked in and you would have thought there was no one else in the busy place. She exclaimed over all the “cute” animals. We told her that she could select one that she’d take home and make hers. She was overjoyed!
She chose a simple bear that we took to get stuffing in. On the way, we stopped to pick out four hearts, write our initials on them and inserted into mom’s bear before he was sewn up. Mom exclaimed happily during the whole time. The best part was when we asked her what she wanted to name her bear and she proudly announced that his name was Noah. Mom loves Noah.
The avatar for this blog is a picture of our hands with our hearts on them. Every time I look at the picture, I am reminded of what it represents. Three families, three full lives came out of the one. At the time the picture was taken, it represented 233 years of living (between the four of us), 20 people in the immediate circle and countless others in the extended family. The picture reminds me of laughter and tears, hardship and times of plenty, togetherness and separation, similarities and differences, hopes and dreams, and best of all love. I would have to truly say that a picture paints so much more than a thousand words.
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.
Maybe I am nesting – no probably not, but I am going through a cleaning phase so we have made several trips to the county refuse collection facility and the local charities to donate reusable items. We have also rearranged a little. Again, this is quite a bit of change for a little old lady who has a hard enough time figuring out the cabinet for coffee cups and how to run the dryer.
I really think some of our activity has sparked in mom an old feeling of keeping her own house, after all she has kept her own house for the better part of a century. So, while I sort and clean, she has been hunting for things to “put away” or throw away. She has also become quite bossy and possessive.
She had a bossy statement for me this morning and I chuckled at the realization that I was not allowed to answer back when I was a child and now I still can’t answer back! At least now I don’t a reason to because I have nothing to prove despite the fact that that I truly believes she thinks of me as a child. After all, I am her daughter and she has no recollection of me growing up, getting married, and having children and grandchildren.
So, it is nothing personal. When she might have had an agenda for her statements before, she does not now. She can’t. The problem is that I forget that it is nothing personal and my feelings get hurt – actually my pride gets very wounded. You see there is still that little girl inside of me that wants my mother to be proud of the woman I have become. Lesson learned – tell my own children how proud I am of them and how much I love them – as many times as I can.
Today, my focus shifts a little. Because I want to share what life is like in our household as we care for a loved one with dementia – it includes us. The intent is not to whine nor is it to glory in our efforts, but simply to open our front door so that we are not only transparent but truthful. Too many times in my life our family has put on a facade of happiness and well being that did not reflect the true life of a family living together and I think that did more harm than good.
I am grateful that mom is still physically strong so the challenges don’t include those that might require us to help her with tasks such as bathing. Mom is still able to contribute to the family by doing simple chores. As a side note, I am struck by the way mom’s dementia has taken away her ability to remember points in her past and present, but has not diminished her capacity to do rote housework such as washing dishes or vacuuming. For what seems like routine activities for us like cooking or setting the table, I have come to realize that each has differing requirements for processing hence mom’s ability to do some and not others.
So, back to my point – making sure we as caregivers take care of ourselves is just about as important as caring for our loved ones. We need physical rest, leisure time, activities that stimulate our creativity and learning, and of course good nutrition and exercise. We are not alone in our care for mom – this is a family enterprise – still with many challenges that create difficult decisions to make. But some folks don’t have such resources. I know there are well meaning and truly valuable programs run by local, state, and national organizations as well as non-profit and for-profit companies, but sometimes it just takes a friend or neighbor that notices and stays to chat at the mailbox or drop off some banana bread or send a care package with “fun” stuff in it for everyone. Next post? A list of a few of my favorite things and my address….just joking!
One of the seemingly good ideas was to include mom in family activities. So, all last week, we were on a road trip to see a couple of the grandchildren and two of mom’s three great-grandchildren. There was no easy way to travel so we packed a lot of gear, made sure mom was comfortable and took to the road.
In hindsight, our goal was laudable. In this time, when mom is still physically able and she can still identify family members, we would make sure the family could spend some time with her. And, of course the fancy that mom just may enjoy herself and her extended family.
We were not entirely wrong but the week was trying and created more hardship for all of us – much more than we ever anticipated. I feel like I did not read my own writing or that any of my research seeped through my brain. I wanted for some of what the “experts” said to be slightly off. I wanted for our situation to be an exception rather than the rule. What I wanted was something no one could give mom – a chance to break through the connection that is hopelessly lost and for even a few minutes, to have our mother back.
I have to say the great-grandchildren enjoyed their great-grandmother though mentally and emotionally, she acted their age instead of hers. She pouted, fussed, worried, and didn’t sleep a wink until our trek home. Oh, and “home”? That is a strange word to her because she has no idea exactly where “home” is. Home is where there is some routine, where things are familiar and there is little to process. The verdict is – no more road trips – we are staying home.
Some mornings, you would think mom is preparing for a marathon. She walks at a very brisk pace that is practically a jog for someone her age. Her morning walk is something she does not forget and very much looks forward to every day.
She used to walk leisurely on many days, but when her caregiver left and it was just her and me, I started her walking at a good pace. I was proud that she could walk a mile in 30 minutes – we actually started out only walking half a mile. Soon, she could do a full mile!
Now, after six weeks of this daily regimen, she walks at an average speed of 3 mph and this morning broke her own record going 1.95 miles in 35 minutes. There is a part of me that wants her to slow down, but in my own exercise regimen, the “feel good” factor is easy to be addicted to. So, why should it be different for her?
Could there be a correlation between some of her “improvement” and the qualitative and quantitative increase in her daily physical activity? Maybe. No, she still does not remember what she ate for breakfast or how to cook an egg, but she holds her head up high and lives vicariously through our lives. She told me the other day how she enjoys being a babysitter although she has never changed a diaper or fed our little guy. It’s okay – as long as she want to be a part, she can.
If I had sat down and printed out the research on dementia and were to try something, I would have chosen to increase mom’s activity level. Good thing that is the way it turned out. According to exercise sites and medical sites, regular exercise helps with:
- reducing stress
- improving sleep
- decreasing feelings of depression and anxiety
It is no wonder then that mom shows up with her walking shoes on shortly after breakfast ready to hit the road.
Here is a link to an interesting article regarding a possible link between exercise as a therapeutic option: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3258000/
Yesterday, Frank and I walked in from a quick run and found mom sitting at the breakfast table. At first glance, all looked normal with her open word search book, familiar pen and straight edge – she is a little OCD with her straight lines when she finds a word. She closed her book and excitedly told us that one of my sisters had called and told her that she’d be picked up in two days. I let her chatter about how Sue had called and that she needed to pack. She actually asked for her luggage!
She looked at me dumbfounded after I told her that we were going on vacation and no one would be home in two days. She brightened up after I told her where we were going and quipped, “That is driving distance from California! Sue can just pick me up and maybe we can drop by!” Folks, we are talking about the difference between the east coast and the west coast so there is no “dropping by”.
I practiced being gentle and trying to lead her to a better place, but she has a very focused stubborn streak and would not let it go. She insisted for a couple of hours going so far as telling Sue on the phone that we never took her anywhere or did anything. So I prayed for her – for calm, comfort, and a return to some sort of normalcy – I just told God I had no idea what to say so could He please help? I thought this was humorous in light of what I posted just that morning.
This morning, I tested the waters and she is okay.
Beautiful morning for a walk!
We went on our normal walk and the picture I took told me volumes. At this moment, my shadow is bigger and taller than hers. Her form is bent and mine for the time being is straight. She needs me to protect her even if it is from herself. There was a time in the not so distance past where the roles were reversed, but it is my turn to provide refuge and her safe place.
Psalm 91:1 He who dwells in the shelter of the Most High will abide in the shadow of the Almighty.
At 1p.m. Eastern Standard Time which is 10a.m. Pacific Standard Time, an alarm goes off on several devices. For me, it is my phone. Our family has committed to praying for one another at this specific time during the week. We pray at other times, but this time is reserved just for our family. We are sometimes pleasantly surprised by circumstances and a couple of us can actually call so we can pray together.
As I study more about mom’s condition – it would seem that all of a sudden I am in the company of many others in the same situation – and I am asked to pray for these folks. Here is my conundrum. The Bible says much about prayer:
- James 5:16 Therefore, confess your sins to one another and pray for one another, that you may be healed. The prayer of a righteous person has great power as it is working.
- Colossians 4:12 Continue steadfastly in prayer, being watchful in it with thanksgiving.
- Philippians 4:6 Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.
But, what am I supposed to ask for, especially as it pertains to mom? Healing? Comfort? Restoration? At this moment, we have older friends who we know are in their last days and of course, we are praying for them. A couple of them are already over 90! Realistically, the aging process can’t be reversed, nor can the effects of some chronic illnesses or injuries.
Here is what I have found. I tell God all. He wants to hear what is in my heart about those for whom I pray not my finely crafted, eloquent masterpieces of oration that would please an English teacher. One of my favorite episodes of “Elmo’s World” (I have a grandson who loves Elmo) is a Christmas one where Elmo can’t figure out what to get his goldfish, Dorothy for a gift. So he goes to visit Santa who thinks Elmo came to sit on his lap and share his Christmas wish list. Imagine Santa’s surprise when all Elmo wanted was Santa’s suggestion on what Elmo should give Dorothy!
The practice of prayer in my life especially now is simply to practice the presence of God (A book of the teachings of Brother Lawrence, a 17th century Carmelite monk is aptly called, “The Practice of the Presence of God” – great read!). Prayer is living the moments in each day with God – being aware of His presence as a friend and companion but with power and awe as the Almighty.
Solomon is touted as one of the wisest men who ever lived. His discourse in Ecclesiastes 12 however, is not one of my favorite chapters. When I was in my 30’s and 40’s – it was easy to dismiss the words of wisdom as something to do later. The advice he gave to “remember also your Creator in the days of your youth, before the evil days come and the years draw near of which you will say, ‘I have no pleasure in them.'” Then came the litany of vivid word pictures that describe what happens to an aging individual. Here is a short list of some of how Solomon described the effects of aging:
- keepers of the house tremble
- strong men are bent
- grinders cease because they are few
- those who look through the windows are dimmed
- afraid of what is high
- afraid of terrors in the way
- desire fails
This would not make a good print ad! I’m not sure that retirement communities would necessarily point out that your neighbors, especially the older ones, will be in the midst of one or more of these or all of these.
Enter mom. I watched her all weekend. What I saw was all of what Solomon described. Sure, she had her spurts of energy and spots where she was the “mom” again (or at least she attempted it), but generally Solomon was right on target. Well, of course he was as God gave him the wisdom to pen Ecclesiastes.
I enjoy cooking (and eating) and work hard to provide nutritious, tasty meals for us to enjoy. Well this weekend, I watched as no matter what was served or where – home or restaurant – mom would close her eyes and chew as if it was a monumental, laborious task. In this culinary centered society of ours, it is hard to imagine when eating becomes a chore to be endured. Because of the dementia, mom does not get hungry or thirsty. We have to make sure she eats and drinks. Mom can fall asleep sitting anywhere, but she is never tired so we have to make sure she rests.
In the 12th chapter of Ecclesiastes, Solomon says, “The words of the wise are like goads” (vs 11). Some of us are a little more stubborn than others and reject the pure wisdom right in front of our faces. I pray for a little less stubbornness for me and for mom. Gotta run – she is in the kitchen playing in the water again.