A casual friend of mine recently read my book, My Life Rearranged, and left this lovely comment on my email: “I am really shocked at how many years you were a caregiver and realize your time now must seem like a gift.” I hadn’t really though about it, as I was just simply glad to have had the strength to be able to support my husband to the end.
Sitting at my grandson’s soccer game, I thought about her remark and concurred with her – my life, now, does seem like a gift. I am back in the world of the living. I am no longer counting out pills, driving to doctor’s appointments, overseeing his health needs, hiring caregivers to give me a break, changing his diapers, all while trying to stay on top of all the myriad responsibilities that go with the disease. I am no longer exhausted by the long journey, nor filled with despair. My days are mine and my nights belong to me.
Yes, I miss him but not the long hours of caregiving that went on for a decade. The world seems bright, full of promise and I plan on enjoying every moment.
Yesterday I took my son to out-patient surgery for his foot because his wife was busy with a school trip. As I sat in the waiting room, it reminded me of my previous caregiving days and the hours I logged in doctor offices, hospitals, and surgery centers. This time it was different – I was not the primary caregiver and when it was over I could go back home to my life.
Not that I won’t help out but it will be at a greatly reduced level. As I watched the various caregivers come and go, I found it interesting to see the different states and places they were in. I was touched by some genuine feelings of love and care, saw concern, and saw relief. Whether you are a caregiver for a day, a month, a year, there are many commonalities.
My son is fine and I am happy to being back to grandma.
Another holiday has rolled around and before we know it, it will be Memorial Day, July 4th, Labor Day, Halloween, Thanksgiving, Christmas. While holidays can be a great time to be with families and friends, for caregivers it is often a time of added stress. It need not be that way as this is a wonderful opportunity to turn some of your caregiving duties over to others and enjoy yourself. This is more easily accomplished if you plan ahead, let others know, and work with them to assign various duties. These duties don’t have to be long in duration – especially if you have a large family to go round and share.
This is not being selfish or using others. This is simply about taking care of yourself, and giving yourself a much needed break. Go ahead an give it a try!
Yesterday I had the pleasure of meeting other caregivers at The San Diego Tribune Caregivers Expo. The majority of caregivers I met were Alzheimer Caregivers as I was there with my book, My Life Rearranged, about caring for my husband who had early-onset-Alzheimer’s. However, I met a few others dealing with Parkinson’s, which has crossover symptoms. It was a picture perfect day as the weather was wonderful and the program and exhibitors were beneficial to all caregivers.
Being a former caregiver, I am still surprised by the resilience, honesty, and kindness of caregivers as I listened to their various stories. It is a often a heart wrenching time in one’s life, a difficult job at best, and a lonely endeavor. Yet, caregivers rise to the occasion. I was touched as I talked with the following caregivers: a woman whose husband was newly diagnosed and struggling with acceptance, while simultaneously starting a new life for both of them; a son caring for his elderly mother; a paid caregiving keeping Dad going, while his daughter and son worked; a woman who cares for her husband while she herself is ill. As I listened to these caregivers, it reminded me, once again, how undervalued caregivers are. The sacrifices they make to help family often go unappreciated, even sometimes by family itself. It is time to give caregivers some help in terms of tax credit. Too many are struggling to stay afloat, worried about missing days of work, concerned about their own health, and tired from long, endless days. And it is time for each of us to help and thank caregivers we know – it means so much to be appreciated. And thanks to The Tribune for this special day for all Caregivers.
Last week I ended by mentioning the “good enough caregiver”. It’s an idea or concept I discovered well into my caregiving days. In the beginning of my husband’s diagnosis of early-onset Alzheimer’s, I was determined and sure I could beat the whole thing, by being the perfect caregiver. I researched the illness, signed him up for clinical trials, accompanied him to myriad of doctors appointments, became active in The Alzheimer’s Association, and planned his days to keep him active and engaged. All this while working full-time. I think, unconsciously, my role model was Martha Stewart. If she could do it for the American Housewife, I could do it for The American Alzheimer Caregiver.
All was fine the first year or so but as the demands of the illness increased, I found I could no keep up being the perfect caregiver. Exhaustion had set in, resentment was beginning to start, and I was developing compassion fatigue. Something had to be done, so I gave up trying to do it all by myself, trying to be perfect, trying to think I could beat it, and changed my thinking and ways to good enough. By changing my standards to something much more realistic, I became the “good enough” caregiver and learned to relax, and go with the flow. While I can’t say I enjoyed the situation more, I certainly found it less stressful and had more of myself to give in a healthy way. If I had not changed, our story would have been different as I would have burned out, and not been able to see it to the end.
Caregiving seems like a forever process without a break. Days roll into weeks, that roll into months, that roll into years and sometimes decades. Is it not surprising that caregivers burnout. 21 months into caregiving it is reported that caregivers seek medication for sleep and or headaches; 24- months finds caregivers drained; 32 months stress is harder to conceal and this is the time caregivers often start on anti-depressants; 38 months its harder to keep up a daily routine; 60 months is associated with chronic fatigue. So what do friends, family, and care professionals tell us to do? Take a break, get a facial, take a bubble bath, join a support group – all good suggestions but temporary because when the task is accomplished, we return to where we were before.
So what is a caregiver to do? This is a question I have struggled with over the years, as I am sure you have. I would love to hear what you do. For me, I joined a support group and found it immensely helpful, learned to say no people/engagements etc. that would add stress to my life, learned to ask for what I needed and be clear about it, and finally became the “good enough” caregiver. More about that next week.
Disheartening news arrived today, when I picked up the newspaper and read Biogen halts promising Alzheimer’s drug trials. Years ago when my husband was diagnosed with early-onset-Alzheimer’s, there were 20 drugs in the pipeline, so we were sure there would be something for him. And, there was no doubt or worry about our children’s future. How wrong we were. My oldest child is five years away from being the age her father was when he was diagnosed and my youngest child is coming up from behind quickly. I try not to worry but somedays are harder than others, like today when it was out there…another failure. Will there ever be a cure? Why is this disease so impossible to crack? What will be the fate of my children and grandchildren? These questions continue to roll around in my head and will until researchers unlock the answers. Please help anyway you can in this fight, either by donating money or becoming part of a research study.
As a caregiver, whether in the beginning, middle or end of the journey, one can at times feel as if they are in a cage; this is normal. It can be very difficult to see beyond the, days, months or even years may lie ahead years. Taking it one day at a time is the best way to go. But I want you to know that there is life after caregiving. It is not the same life as before, but it is life and it will beckon you to come out and enjoy. This is your time. Open the door and step out…you deserve it.
I am feeling much better than I did last week when I felt like I was so caught up in things, I had no time for me. Just the small act of blogging last week – something I really wanted to do but never quite got around to doing – has made me feel more in control of my life. I remember the same parallel situation from my caregiving days when everyone else’s needs were paramount and I couldn’t seem to find anytime for myself. We all know that living like that causes burnout, illnesses, fatigue, depression, and the list does not end there. Yet, we keep going on in the same direction, truly believing we don’t have the time to take care of ourselves. One of the greatest lessons I learned as a caregiver was, no one is going to save me but me. At first, the realization was difficult to absorb but eventually it became liberating. That doesn’t mean I don’t have people that love and care about me, because I do, but only I can save myself. With that realization in hand, I started the slow process of taking back some of my life. One of the first things I did was establish my “you cave” that I talked about in my prior blog.
I learned to be assertive in asking for what I needed, but first I had to become very clear about what I needed. After much resistance, I joined a support group where people were in the same situation as I, and I felt both understood and validated. I worked to figure out what tasks I could turn over to others, both professional and personal, by asking myself the question “what am I taking on, that I don’t want to or can’t do?”I also checked the negative self talk rolling around in my head and worked on replacing it with something more positive thoughts. I started journaling as a place to deposit my thoughts I could not or did not want to share with others, and this brought a great sense of relief to me. All of this did not happen overnight, just like getting back to blogging, it took time, determination and commitment. Commit today or very soon to start to get back a life for you.
Great to be back blogging about Alzheimer’s and reaching out to caregivers. I got all caught up in getting my book out, speaking engagements, marketing, and the list goes on, that I forgot I had a life and there were other things that were also important to me. Just like what happens when we are caregivers and forget about ourselves; a very dangerous thing to do. Don’t get me wrong, I love working on my book and one of the most recent things I am doing is serving as a Caregiver Connection Ambassador for The Caregiver Connection. If you are not familiar with this wonderful online group, goggle The Caregiver Connection, and learn more, while enjoying their many services available to all caregivers.
But back to you. It is so easy to be overwhelmed with caregiver responsibilities, that you forget about yourself. Ironic isn’t it, as in order to take care of someone, the first thing you have to do is take care of yourself. You can start slowly by carving out small pieces – maybe just minutes in the beginning – for just you, working up to lunch out with a friend, or a trip to the library. Whatever it is that connects you back to yourself. Create a Just for You, You Cave. Why not…men do it with their man caves. My “you cave” was my closet where I would go and hide and deep breathe, even if only for two minutes. Ask others for help, so you can get out or be alone for a short period. Disconnect from your phone, every now and them, let the house be messy and take care of it another time. You need to start small, but it so important that you take care of yourself. We are often called the “hidden or 2nd victim” because the focus is always on the one that is ill. Sometimes you maybe the ONLY person who can put the focus back on you. This is not selfish, this is saving you.
