This woman… this woman whose husband died and left her to raise 3 young children on her own… this woman who didn’t just single parent them, but single parented them WELL… this woman who buried her father, mother, and brothers and is the only one left of her immediate family… this woman who raised her grandchildren with love and tenderness… this woman who has seen more hurt, more pain, more destruction than anyone should have to… this woman who has loved and served the Lord faithful… this woman who does not speak ill of others and has stayed humble all her life… this woman who has now reached the end of her life’s journey with dignity and more than enough to worry about regarding the ones she loves… this woman who trusts and praises God no matter what… If only you could see what I see when I look at this woman who has aged, but remains the strongest woman I know. This woman has always been and will always be my hero.
I’m the mother that tucked you in each night and woke you up each morning to start the day. I’m the mother you ran to when you’d hurt yourself…the one you cried out to when you were scared. You and I, me and you… we were close. Picture after picture of captured moments of your little face smiling next to mine. Back then there was no “adoptive mom” or “bio-mom”… it was just “mom”. It wasn’t that you didn’t know that you had another mom too but you easily switched between the two… mom 1 and mom 2. I didn’t have to worry about whether or not you’d want to come home because I knew that your heart was here and there was no competition.
Oh how I long for those “younger” days before the pre-teen turbulence and hormones came to stay. Now days I never know which girl I’m getting… the one that wants to spend time with me, the one that pushes me away, the one that seems agreeable and then in a moment turns into a sarcastic brat, the happy go lucky giggler, or the the one that is silent and sulky. Any one of these many faces you wear I could handle because I too remember I was once a hormonal teenage girl. However, when you couple any one of these faces with your longing for your other mother it pierces something deep inside me. I know you love her and I recognize your need to have her fill the hole in your heart, I just wish it weren’t at my expense because most of the time the cost feels much too high.
Your heart no longer returns to this home as you build dreams in the sky of the home you would have with her. Some hurts you still come to me but I see more often you want to talk with her. Your anger, your sarcasm, your hurt are all aimed at me because I’m the safe one that won’t leave you. Yet, your sweet words, your love, and your time are given to her so that somehow you can hold on tighter to someone you fear losing.
I’m not sure how to bridge this gap…not even sure I could bridge it if I knew how. We always hear of adopted kids needing to meet their bio-parents to know where they come from and fill a void. You know her. You have always know her and been a part of her life. And yet here we are…you and me, me and you. Am I stepparent? Am I adoptive mom? Am I the other mother now?
When did this all get so hard? When did hurt become the predominate feeling of our relationship? When will I ever feel like the “real” mother ?
I was grouchy lastnight. I knew I was being a passive butthead but I couldn’t seem to make myself care in my passive aggressive state. Quiet disapproval was about all I could muster for him. My husband is a good man. He works hard 10hrs a day so that I can stay home to take care of Grandma and James. He really is my knight in shinning armour and I love him…. But jealousy and a touch of resentment reared its ugly head lastnight.
Jay had been asked to go to a local brewhouse after work with a vendor to discuss business. Which was not the problem. Jay often has business meetings with vendors. He sometimes asks me to go but I can’t because I have Grandma and James to take care of and I would feel guilty asking my daughter to come sit with them while I go out to dinner or I begin thinking about what a pain it would be to have to eat in front of a stranger with my braces (hoping I don’t have stuff stuck in my teeth behind my braces etc. totally embarrassing.) . Either way the decision is usually mine to go or not to. Anyway, he left for work at 7:30am and didn’t get home until after 7:30pm. I was prepared to be nice and not let things get to me, since at this point I was more resigned than resentful of my current circumstance. However in a blink of an eye being resigned turned to resentful as he dished out his dinner on a plate, grabbed a cup of juice, and downstairs he went to eat and watch the hockey game until 9:30. I’m told the Capitols were playing…but since I neither know who they are or care it did not lesson my grouchiness at his obvious lack of understanding that I would like to see him or spend time with him. When I went downstairs briefly to change into shorts (I needed to get back upstairs for Grandma and James, thus the briefly) he was sleeping…or resting his eyes as he usually tells me.
Regardless, at that moment the red of frustration or the green of jealousy clouded my vision and I took myself back upstairs. Hoping that he would come up after me..but that didn’t happen. Hoping he would understand that my day was important too…but he didn’t. As soon as I was able to get everyone settled and into bed I took myself downstairs with a “See ya my job is done and I’m going to bed.” As I began my descent down the stairs to our room I heard him ask the question with surprise in his voice, “Is something wrong?” I continued to walk downstairs without a reply. That will teach him I thought. I got ready for bed, turned on the baby monitor so I could hear if there was a problem during the night, and rolled over on my side not willing to have a conversation with him about my snappy remark. This morning he did not wake up early and as usual I was calling him to make sure he had woken up for work. By this time, I had already been awake and upstairs for 2hours. When he came up the stairs the first thing he said to no one in particular was ” I need to start waking up and setting my alarm. I keep oversleeping.” To which I replied, “Yeah you do cuz I’m tired of always having to call to wake you up.” He asked if something was wrong because I snapped at him and had been snappy lately. I said no and decided to remain quiet because how was I suppose to say “Yeah, you know what something is wrong. I was jealous of you being able to go out, even if it was for business. I was jealous of you being able to go downstairs or in the other room to watch tv to decompress after work. I was jealous of you being able to go downstairs and rest your eyes because that’s not something I get to do. I was jealous and alittle resentful that you have the luxury of going to work and coming home away from work, knowing that everything is going to be taken care of for you. Dinner would be done, the bills paid, our kiddo looked after, Grandma and James supervised and cared for, the laundry completed, the dishes in the dishwasher, etc.. You have the luxury of coming home and taking care of yourself because someone is taking care of everything for you. But me… I will go throughout my day taking care of people, chores, finances, or anything else that needs done. I will not leave my job because I live at my job site. I will be on-call tonight and every night for the foreseeable future, which will hopefully be a VERY long time, because to not be “on call” means one or both of my charges are no longer here. I will happily do this job because I love the people I’m serving and I love you. I will sacrifice because I know what it means to these lovely people to have dignity at home in my care and not in a nursing home surrounded by strangers. And I will put a smile on my face everyday in front of them…even when it is rough because they need to feel and know that I love what I am doing…..because I DO. Saying I the words outloud that I felt jealous just feels wrong…petty…childish…selfish
But please don’t ask me if something is wrong because I’ve been snappy with you. Don’t be surprised when the only person I can lay some of this frustration down on is you because you’re my other half. Don’t say to me I’m so tired after working and not ask me or acknowledge that I might be tired from working too. Don’t go to work all day and decompress all evening and think that I won’t be hurt. Don’t take for granted that you have had adult conversations all day or get to come home when your day is finished. Don’t forget that you are being paid for your time because it’s valuable to someone.
But please do remember that I have been home all day taking care of people and things so that your life and their lives are easier. Please remember that I am going to be tired at the end of the day, even if I’ve been able to sit on our couch, because my exhaustion is often emotional. Please remember that taking care of an adult with dementia or an elderly woman comes with challenges that I pray I am up for for the long haul because alot rests upon my shoulders to be strong enough. Please remember that I need adult conversation and interaction that isn’t just with the people I am responsible for. Please remember that my time is valuable even if it is not measured in a monetary amount.
Do see me. Do ask me to tell you about my day and listen. Do tell me to go rest and you will take over for a few hours. Do remind me that I still am desirable even if I feel like “just a caregiver”. Do show me appreciation every now and then. Thank you’s and just being held do alot to remind me that you notice the things I do.
And above all please don’t get upset with me because sometimes I’m not as cheery as I should have been or because I couldn’t “just get over” my feelings for the moment. I’ll rebound to my “normal self” soon enough but until then just love me through my current hard the way that I have been loving you through.
Most people would think I’m lucky staying home. I mean who doesn’t get tired of their job and yearn for a vacation. Who doesn’t wish they could pull the covers over their head, lounge in their pj’s all day, and binge watch Net-flix or read?? I wish I could make people understand that being home 24/7 is not all it’s cracked up to be.
I don’t get to pull the covers over my head and sleep in. Most mornings…no correction: every morning… I wake up for my day at 5am, 5:30 if I’m lucky. This is when my dogs have decided that they must get up and go outside. However, this isn’t the time that I really wake up. There are numerous times during the night that I will hear the sounds of laughter or talking or the floor creaking upstairs as someone makes her way to the bathroom. You see, right next to my head is a baby monitor with the volume turned up and the handset sitting in the hall right outside my cousin’s door. The monitor allows me to hear if he wakes up and falls or wanders. It also helps me to hear if Grandma falls or calls out on her way to the bathroom during the night. James (my cousin) has Alzheimer’s so his sleep is not always sound and many times between 1am-4am he will wake laughing or have a long conversation with himself. By 6am, James is usually up for the morning waiting for me to take him to the bathroom. I’ve been “on-call” all night at my job here at home and have awaken atleast once, most times twice before my 5am start of the day begins. I’ll drag myself from the bed, eyes still have closed, and let my dogs outside. Then I’ll lay on the couch for all of 10mins cursing my tired eyes for hurting from lack of sleep. Then it’s up to switch laundry, put any dishes in the dishwasher that I may have forgotten the night before, and ready the house for the day ahead…James will be up soon and there will be no naps for this home dweller during the day.
Sometimes I do stay in my pj’s all day, although I wish there were a reason not to. I stay in my pajamas for a number of reasons during the day. Sometimes I stay in them because there has not been an opportunity to go downstairs and change. Often times I can’t shower because “what if” Grandma or James needs to use the bathroom. More importantly, who would help James if he did need to go to the bathroom if I were in the shower or downstairs changing. Other times, I stay in them because I know I am not going anywhere. Maybe it’s too wet, too cold, too windy, too snowy, etc… for Grandma to desire to go out, which means we are staying in. Mostly, I know I will be staying in because getting two people downstairs and into a car and around town that need help can be overwhelming for just one person. But we do it, it just takes us longer. Then I have a reason to change those pj’s. They are comfortable but if they are on past 11am I’m pretty much going to feel like a slacker because I didn’t get changed and probably won’t find the opportunity to do so.
Binge watch Net-flix? ah…no. Get engrossed in a book and read? ah…maybe but I will be interrupted all day with chores and caring for someone so I’ll probably read the same sentence atleast 20 times before moving to the next sentence or reread the same paragraph multiple times because I forgot what I was reading while changing an adult diaper.
During the day, I will do the laundry, the dishes, and straighten up the house multiple times. I’ll make meals, wipe butts, get James dressed, and listen to the same repeated phrase multiple times. I’ll do a hundred other things that are the same everyday, but necessary for the running of this caregiving home. I’ll stay upstairs in the same room keeping watch over my charges. Finally, I will put them to bed and make sure everything is taken care of before retiring myself. By 11pm I’m down in my own bed tired beyond reason and ready to be “on call” for the night.
There will be no pay, no bonuses, and no promotions. But my reward will come in smiles throughout the day from the two people I’m called to serve. It is enough.
In my last post I wrote about James both as he was and as he is now. I wanted you to know this amazing person I take care of because to just write that I am his caregiver is to forget of how full his life once was. Additionally, I wrote it because I’m finding myself at a loss to find others who are struggling with the same things I am and I want to share our journey. There are lots of caregivers taking care of individuals with early onset Alzheimer’s, but not many are writing about their experience taking care of an individual with the dual diagnosis of Down Syndrome and Alzheimer’s. I search the internet goggling Down Syndrome and Alzheimer’s so that I can hopefully find others that talk about their journey and how Alzheimer’s affected their loved ones so that I can maybe see how James is tracking similarly or not so similar. But maybe if I can’t find the blogs and sites of others looking for information, encouragement, and support… maybe I can be the someone that helps someone by writing it myself.
Briefly I’ll write about what James’ decline looked like. However, there was nothing brief about going through it. As I stated in my previous post, James had a grand-mal seizure back in September of 2017. He had had 2 small falls in my bathroom and one bigger fall prior to the seizure in the 3 weeks leading up to the seizure. I attributed those falls to his poor eyesight and not knowing the layout of my bathroom the way he knew his bathroom bath in California. Later, I as well as others, would come to believe that instead of falls due to poor eyesight they were due to small seizures he had when standing up causing the falls. At the time though I had no clue James had ever had a seizure. He was placed on 1,000 mgs of Keppra which made him bedridden, completely confused, and ill with dry heaves and other side effects. Over the next 3 months He was in an out of the hospital and doctor’s office while everyone tried to figure out how best to treat him. When the Keppra didn’t work he was placed on Dilantin. This made him marginally better but not by much. He could not bath himself, toilet himself, walk on his own, etc. I transported him by wheelchair and walker everywhere we went. This was a difficult time because I had no clue what was going on or how to help. All I could do was be his advocate for good care and hope that as helpless as I felt I was actually helping him. In November, after a stay in the hospital we decided to take James off all drugs and let his system return to normal before trying anything else. He was placed back on Keppra at only 250mgs, given physical therapy, and began to improve steadily. He never did get his ability back to bathe or toilet himself, but he did begin speaking again in very short sentences. He also regained the ability to walk slowly and enjoy simple things like sitting in the living-room laughing with us. Between late November-February, he continued to improve on the medication to the extent that he had no seizures, could converse with us on the level that a 3yr old might, remembered who we were 70% of the time, and was able to enjoy brief outings out shopping or going for a drive. However, late February he had another 3 seizures and his dose of Keppra was increased to 400mg. Since March 2018 to present day June 6th 2018, James is stable. His memory has declined some. He remembers us (his family that is with him on a daily basis) about 60% of the time. He has brief limited conversational skills, his speech is harder to understand, he does not do the things that used to bring him joy very often anymore. Now he will sit on his bed and stare blankly, or laugh hysterically for what seems like hours, or repeat to us the same phrase over and over. He is able to converse still, able to briefly keep his attention to the subject he was on, able to locate music on his phone, and able to remember things from long ago 20 or 30 years. Short term memory is almost gone and comprehension is limited and depends on what is being asked or spoke about.
During this whole time I have been James’ 24/7 caregiver. I can tell you if you had asked me what a caregiver does prior to bringing James and Grandma to live with me I probably would not have had a clue. I mean I could’ve said it would be difficult or a little time consuming, but I had never experienced it outside of raising kids (which is different than taking care of the people who took care of you or that you grew up with). Over the last 7mos-1yr, I have struggled with finding my worth in staying home. I have sometimes felt inadequate when someone asks me where I work and my reply is that I stay home while others head off to the “grind”. I’ve struggled with guilt when I watch my husband go off to work to provide for us and I am not able to contribute to our income to help our family. I’ve struggled with frustration when there are a hundred other task that I need to do that are not associated with caregiving, but that I can’t because I cannot leave the people I care for without someone. I’ve struggled to slow down and not feel “lazy” when I slow down my pace. I’ve struggle with feeling like a failure when somehow I forget to wash Jay’s t-shirts or forget to pick something up at the store or pharmacy, or even if I just got too tired to cook because I’ve been doing other stuff during the day. I’ve struggled with sadness when I see illness or age take from James or grandma a skill they had previously and sometimes it can feel like I’ve been punched in the gut when I watch a decline in their health. I’ve struggled with inadequacy when I haven’t gotten them out for exercise or when I feel I didn’t do something right. I’ve struggled with feelings of guilt for taking time for me because there are so many other people that need me. I have struggled with being cranky with the ones I love when stress gets too much. I have struggled to contain my tears and ease the lump in my throat when emotions threaten to overtake me on sometimes a daily basis.
This is caregiving in all its glory. It is full of rewards too if you stop for a minute to appreciate the little victories or see the smiles from your loved one and know that a part of that is because of you. Caregiving is making memories and cherishing the fact that though this time is hard you will never get this precious time back because when they’re gone these are the memories that will carry us through. I am grateful for these times as hard as they are.
James is 44yrs old. I’m just over a year younger. James was born healthy with a diagnosis of moderate Down Syndrome. 44yrs ago the prognosis was not great for babies born with Down Syndrome because health professionals were still learning what these individuals were capable of. Parents were unsure of their little bundles of joy and doctors were quick to say these babies would not learn to function like other children, becoming a full time drain on the ill-equip new parents. Out of home placements were advised to “help” the child with health and physical limitations. James was not an out of home placement and there was no way my family would have allowed that any way.
Growing up with James was a hoot. He was a joker and loved to make people laugh. He still loves making people laugh. When he learned at school what 911 was there was no shortage of calls made by him to come to the house for a rescue. Fire trucks and police cars were a regular appearance at our house. Of coarse no one needed rescuing but James sure loved seeing them pull up to the house. Eventually, we were told that James was no longer allowed to call and that they would call back to make sure there really was an emergency. When James was at the pre-teen/teen hormone stage I remember him locking himself in a room with his girlfriend at the school he was attending. Boy were the school and girls parents not happy about that. Through his early 30tys James held jobs, took a bus by himself all over the town we lived in, socialized with friends, had dates with girls, and found himself in some pretty hilarious situations (although not hilarious to my aunt and grandma who were raising him) that he decided to get into. This was the James I grew up with. The cousin/brother that I loved and laughed with. However, we noticed some changes in James in his early 40tys. By this time, I had long since moved out and far away from home with my husband and children. James remained with my aunt and grandma. I would hear about and see the changes when I visited all of them. James was very set in his routines and could become very stubborn and angry when things were not going the way he wanted. He was less social then he had been but not enough to alert anyone something was wrong. Then about 2yrs ago James began getting a bit more forgetful and not able to remember things he had always done. For example, if he sat in a seat in the car that he didn’t typically sit in he might not know how to get in or put his seatbelt on. Yet, these were automatic to him before. He was also falling more. We attributed it to his poor eyesight and that he was tripping since he couldn’t see. Taking longer to dress must just be that he was being stubborn and making us wait on him to express his displeasure. My aunt became concerned as some of his forgetting and behaviors became more pronounced. In August 2017, her and I took James to a Down Syndrome study in southern California. There they would do an MRI, CAT SCAN, IQ test, and a bunch of other evaluations to see if James had the beginnings of dementia or just a case of old age. Even with all the tests they could not declare James as having any troubles beyond his poor eyesight, poor hearing, and advanced years. James was still functioning pretty good. He was conversing with people, walking around unassisted, showering and toileting himself, and able to provide some basic living skills for himself i.e. (tooth brushing, getting a snack, etc).
Just days later my aunt would find out that cancer had spread through her body and she would need to start chemo treatments. I had only been visiting to help her get James to his appointments in southern California and was set to return home just a few days later hundreds of miles away in Wyoming. It was the day before I went home that we decided James would need to come home with me so that my aunt could begin chemo. James had lived with her all his life. Now for the first time he would live hundreds of miles away from her. We were worried about his transition but those first 3 weeks went amazingly. He was happy and interacting with everyone. He was loving going on outings and spending time outside walking the nature trails with grandma and I.
Then on labor day weekend, just 3 weeks after coming, James would have his first grand-mal seizure and begin his decline into what would become his journey with early-onset Alzheimer’s.
I was born to nurture people. It is not surprising that my relationship with Jason, (my husband), would begin with me nurturing him as an 18yr old troubled kid. Nor is it surprising that through our marriage we would adopt and raise children with various special needs ranging in areas of emotional, physical, mental, or intellectual difficulties. Through the last 27 years Jason and I have “taken in” too many to count animals and people to care for and love… because like I said… I’m a nurturer. If I can’t take care of someone and something I’m sorta…lost. So it is definitely not noteworthy or amazing (which I’m often told), that I would find myself the caregiver for my 89yr old Grandmother or my 44yr old cousin that has Down Syndrome and Alzheimer’s. In fact, it would probably be noteworthy if I weren’t in this situation because I just don’t have it in me to turn away.
It is here…in this moment… in these circumstances that I find myself stretched and growing to points I didn’t believe would be called of me. After all, I’ve been taking care of people for years in various capacities so what’s the big deal now? The big deal is full time care-giving for two adults whom I love and watching the steady decline that comes with age and illness. This is not a “pity me story” or a “see how great I am story”, it is merely my story…one of many in the sea of caregivers caring for the people they love. I don’t think any of us would call what we are doing amazing because most of the time we just (I just), feel like we are doing what we can …the best we can…and faltering all the time because we are human. We all get tired. We all have moments we literally don’t know how we are going to keep doing this when we look to the future and the unknown to come. We all have struggled with if are we doing this right. We struggle with giving up control to someone else of our loved one because we know how we do things. We have our system that works. We struggle with guilt that comes in waves and sadness that sometimes crashes upon us with no warning… But there is also joy in seeing our people happy and there is warmth that radiates in our souls when we know we are a part of their happy.
James is my cousin. I take care of James. Lois is my grandma. I take care of Grandma. I am a caregiver.