He plays his sweet saxophone every day by my local grocery store. He stands on the street, because he’s not allowed to play in front of the store, but I always hear him. I know when he’s there, because in spite of the noise from traffic, I hear him because he plays from his heart. I don’t know his name, but I do know his sound and he gives me hope. I’ve often wondered why this lone saxophone player gives me hope? I can’t really explain it except that he embodies goodness. I can see it in his face and I feel it when he plays. His music moves me. I always give him a dollar and he’s incredibly grateful. But he gives me something far more valuable than what I give to him. Today he was playing “Have Yourself a Merry Little Christmas,” and it brought me to tears. At first I couldn’t figure out why today was so different from any other day and then I realized that he was my connection to what is still good in our world, that he helped me find some hope in the face of the horrific tragedy in Newtown, Read More…
I love the art of communication. Nothing excites me more than having a wonderful conversation with someone, but when you are a caregiver and trying to find new subjects to discuss with your loved one day in and day out, sometimes conversation is really challenging. What do you talk about? How long will the conversation last? Will there even be a conversation?
Caregivers spend a lot of their time worrying and feeling guilty. It’s the nature of the role. Questioning yourself is normal and yet, it’s also destructive. Nothing gets accomplished when you dwell in this place. If you spend your free time worrying and fussing about all the things you ‘think’ you aren’t doing, you need to STOP! Questioning whether or not you are doing a perfect job is a recipe for disaster. This is not a science, and I’m guessing that you didn’t receive a PhD in caregiving, did you?
Each situation and each patient differs from one to another. Each family has different challenges to overcome. And each caregiver is faced with a unique situation. Just for a moment, congratulate yourself that you are giving a gift to another human being. Congratulate yourself that each day you figure out how to manage what often seems like the unmanageable. If you can face each day with this attitude, your role is going to be much easier. Taking care of an elderly loved one is exhausting and emotionally draining, especially if the person is memory-impaired. As the primary caregiver, it is easy to get caught up in the need to be perfect…to do things perfectly…to make it all perfect. I did this, and truthfully, at one time or another, we all do this, but breaking the pattern of perfection is at the very core of what makes your role in the caregiving journey more manageable. The truth is that you simply don’t have to give the perfect shower. You don’t have to make the perfect meal. You don’t have to help someone perfectly. What you have to do is your best, and for most of us, that is NOT perfect. Begin today with the idea that perfection is off the table. Move forward with a clearer vision of the gifts that you are giving to your loved one.
Remember who you are. Remember who you were before caregiving. You may feel that your life is spinning out of control and that you have really lost your way, but buried beneath the surface, is the YOU who has always found a way. You have not changed. Your world has just been turned upside down. Caregiving can take over, but only if you allow it to. You miss your previous life. You miss your friends. You feel pulled in a million different directions. Your friends and some activities might have to be put on hold for a time until you can once again find the balance.
Go inside yourself and find your inner strength – the fortitude that has gotten through the most challenging situations in your life. Find that strength. You need it now because with caregiving, we forget to stay true to ourselves. This is the very reason why, across the board, caregiving wreaks havoc on our lives.
You need to get clear about what your role is here. You don’t have the ability to cure the aging process. You don’t have the answer to memory loss. You don’t have the power to fix what is wrong. Your role is to help make someone else’s life a bit more manageable. Your role is to keep the person for whom you are caring safe. Your role is to comfort and add some dignity to your loved one’s days. It is not to heal. It is not to play God. When caregivers create this kind of pressure for themselves, the role becomes overwhelming and completely unmanageable. You have to reach deep inside yourself and find the strength and the endurance to manage the caregiving journey with a balance of intelligence and emotion. It’s not one or the other.
Your other role is to help guide your loved one with love and kindness through the remainder of his or her life. The sooner you accept this role, the easier it will be for you to focus on the day-to-day humor (which definitely accompanies caregiving) and cut yourself some slack. We make things too important. We make situations too stressful. Try and be a little bit easy here. If your loved one is accustomed to seeing you jump every time some little thing arises, then that will continue to be the expectation. Your job is to change that over time. Just be with this journey. Forgive yourself the mistakes you will make along the way. Everyone makes mistakes. It is far better to let go than to stay focused on what you “think” you are doing wrong.
If you are really struggling with the caregiving journey, I invite you to reach out and ask for help. You don’t have to do this alone and sometimes talking to a professional can really help you. Don’t deny yourself the benefit of help. The Care Company is here for you. Kelly and I are here to help you.
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There is a vast difference between family caregivers who are living life in crisis and those who are Empowered in their role. It’s your choice how you walk this journey, but you need to get very clear about HOW you want to walk it. Are you Empowered?
Empowered Caregivers Know…
How to manage their lives and put themselves at the top of the priority list.
How to be comfortable in the gray areas of life…
How to speak to doctors with a clear message and a calm voice…
How to live in TRUTH and not FEAR…
How to say NO or NOT NOW to a needy or bossy senior…
How to stop feeling guilty about the condition of a loved one…
How to set boundaries and stick to them in a calm, secure way…
How to ask for help…
How to set up a support system…
How to plan for crisis so that when it comes they are prepared…
How to stay calm in a crisis…
How to manage another’s life without losing site of their own…
Know that they cannot FIX what is wrong with the person they care for…
Know the value of being a strong advocate on behalf of someone who cannot advocate on his/her own behalf. This is HUGE!
Ultimately Empowered Caregivers know that self care is the key to their success in everything!
Do you want to move from overwhelm to Empowerment? Call today and find out how The Care Company makes this happen for you! 855.4CARECO.
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Are you in crisis caring for someone you love? Is your life spinning out of control? Have you lost touch with family and friends? Worse – have you lost your self -esteem? Do you feel like your world has been rocked and wracked? Has your reality changed into a nightmare?
You are NOT ALONE! And you don’t have to live this way. Most caregivers did not plan for this journey. Truthfully, most were just thrown unsuspectingly into it. If you’re like I was, perhaps you thought, “How hard can this be?” We cannot be prepared for what is coming our way, and if you forgot to plan, or you didn’t have time to plan and you suddenly became a caregiver overnight; then it’s easy to see why your life is NOW out of control. It is common for most caregivers to stay in crisis and live each day wondering…what is going to happen next? For many caregivers, they don’t take the time to evaluate if their lives are in crisis. Why is that? Too scary? Not enough time for yourself? Too busy? What are the reasons? If you can relate to any of this, it’s time to get your life in order. It’s time begin managing caregiving from a new Empowered place.
Your life is in crisis if….
You have stopped seeing friends and family…
You have stopped doing social activities….
You’ve used up your vacation time and sick leave days….
You can’t sleep even though you are exhausted….
You are gaining or losing weight for no reason….
You have lost your sense of humor….
Your health is failing…..
You’re happiest just staying in bed….
You have no energy….
Your marriage is suffering….
You have too many bouts of depression…
You have lost your perspective on the beauty and joy of living….
You feel like you are carrying the weight of the world on your shoulders!
If you answered YES to even three of these, you need to take ACTION!
The goal is to become Empowered in your role and this begins with YOU. The caregiving journey is about you. It’s not about all the things have to do and the challenges that present themselves. It’s about the value you place on yourself. It’s possible that it may take you some time to wrap your head around this concept. Afterall, you’ve been giving everything you have to someone else. There’s nothing left to give to you. It may even be that you have to step completely out of your comfort zone and ask for professional help. Sometimes one hour of concentrated help can make all the difference in the world. Maybe this doesn’t work for you. Just think about it. Is there a benefit for you? What is your life worth? What is your time worth? What is your self-esteem worth? Just think about it.
There are very clear ways to change the course of Crisis Caregiving. It won’t happen overnight, but it will happen if you make the decision to be a part of the care plan.
Practical Tips for Making a Shift:
- Understand that you must be at the top of the pyramid.
- It’s okay to say no to a loved one. Be kind, yet firm.
- You must have time off at least twice a week.
- Do something frivolous, crazy, fun, exciting or….do something quiet and peaceful.
- Call your friends and family and tell them that you are sorry for losing contact. Ask for their understanding and maybe even their help.
- Set limits and boundaries that you will keep.
- Make a vow to eat healthy and delicious food that fuels your body.
- Get busy making plans to bring others into the caring process.
- Create a master plan that gives you some time off.
- Accept your own limitations and stop trying to fix everything.
- And above all else…Honor Yourself for the ultimate act of caring for another.
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Moral vs. Ethical vs. Compassionate –
“It’s esophageal cancer,” the doctor informed me in a rather matter-of-fact way. We knew something was terribly wrong, but no one is ever prepared to hear the word cancer. I stood in stunned silence. My knees felt weak. I wanted to scream. I wanted to hit something. This was so unfair after all he had already experienced. He wouldn’t make his 90th birthday. He had three to six months to live. Once again, the pain in my heart – for him – felt heavy.
Due to the size of the tumor and the obstruction it caused, he was unable to eat or keep any food down. I had a decision to make – possibly the most difficult one of my life. He needed a feeding tube or he would die a horrible death. There were no other options. The tumor was untreatable and even if it had been, he was too weak to withstand it. This decision was in my hands. This is when we, who have the Power of Attorney for the Medical Directive wish we didn’t. This is when we want to run away. Never in the most remote part of my brain, did I ever think I would be responsible for making this type of decision. I was literally paralyzed by what was facing me, but more importantly, what was facing him. When faced with these types of decisions we want to abandon ship, but this is when we need the most fortitude.
I had little time to make the decision – about 12 hours. No time to be paralyzed. I did some research but wasn’t satisfied. I learned that feeding tubes are really a moral decision, but I also knew that death by starvation was not an option. I reached out to my support system, but no one could decide for me. Hell, I had to decide for him. I asked for help from his doctors and thankfully, they obliged. We met later that evening and together, we decided that this was the only way to keep him from suffering. As drastic as this was, it was a palliative decision. I was the one to tell him. Once again, praying for strength to do what seemed like the impossible, I found a way; and through all the clutter in my mind; I found some clarity.
I made a clear decision NOT to mention cancer. I could find no point in telling him. He knew something was very wrong. He knew this was not a normal part of aging. He knew, in his own way, that time was not on his side. So why tell him. It was decided that he would be told that he had a massive obstruction and that the only way he would be able to live was with the next procedure. He knew how hard this was for me and helped make the decision easier. When I was explaining what was to come, he took my hand and looked at me once again with those soulful blue eyes of his and he said, “Do it but make it as easy as you can for me.” I assured him that I would. I decided that in these last months, he would get to do whatever he wanted. It was though, without hospice, we gave him his own kind of hospice – WHATEVER HE WANTED became the mantra and NO ONE was to mention – cancer.
For the most part, his days were pretty much the same, except that he napped more often than not. He was ready to leave us long before I was ready to let him go. There was this quiet acceptance about his current state of affairs and it was never spoken of again. That is the way he wanted it.
Making the really tough decisions is part of the caregiving journey. No caregiver is ever spared. Most of us enter into caregiving with little understanding about the decisions we will be asked to make on the part of our loved one. But as we journey through the maze and we discover our inner strength and ultimately our truth, those decisions become a part of us and we are never the same again. As difficult as this was for me, I now walk with less fear of the unknown, because I am always reminded that this journey, my journey, led me to a place of strength, compassion and love. Blessings, indeed.
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I walked into the local bookstore the other day and was greeted by a very large rack of Father’s Day cards. Perfect, I thought. I began perusing cards, just like I had done most of my life. And then it hit me…. Dad is gone and this is the first Father’s Day when I have no one to give a card to; no one to buy a gift for; no one to invite over for a BBQ. You see, I lost my Dad on November 21, 2010 and this is my first Father’s Day without him. The depth of sadness that I’m feeling surprises me. I thought I had grieved. I thought I was healed, but it’s life’s daily events that keep the memory of a loved one alive. It’s little things like Father’s Day that remind me of just how much I miss him.
Last year Dad was in a rehab facility and we took Father’s Day to him. He spent most of the day crying happy tears that as a family, we would come and bring the celebration to him. For the next five months he was back and forth between the hospital and rehab. He came home on November 1, 2010 and passed away three weeks later. He was on hospice care and even though we all knew the end was coming, we are never really prepared. He died with his family present. He was not alone. He was loved and he was comfortable. His wife, my brother and me were holding him when he took his last breath. He had been so sick for so long and I knew that morning that he was no longer imprisoned by his body. I thought I was doing okay until I saw the Father’s Day cards in the bookstore. And you know, there are Father’s Day cards everywhere, including at the local car wash. And each time I see these racks and watch people selecting a card for a beloved father, I’m reminded of my Dad.
My Dad gave me my love of nature. He taught me to ski and surf (which I still hate to this day), but I love the beach because of my Dad. He taught me to hike and ride horses. He taught me to swim in the ocean and to not be afraid. Reflecting on some of the things I did during my childhood; I’m lucky to be sitting here today. He taught me that it’s okay – even expected to take risks. He used to say, “If you have your health, then you are rich.” Today I know this is true, but as a child, I didn’t really get it. As a little girl, I wondered why you couldn’t have both. He taught me the value of a good education and the responsibility that comes with that education. He was a proud WWII navy veteran and he taught me to love my country and to stand up for freedom. He taught me that we don’t always get what we want in this life, but that hard work and a winning attitude always help you succeed.
My favorite times with my dad were our family vacations. I’m not sure we ever knew exactly where we were going. We’d all pile into the station wagon and off we would go at 5:00am (when it was dark outside). We had to get a head start as we headed off to nowhere! But we always made it to somewhere. He was never one to stop at restaurants on our vacations…nope; we were having a picnic at the beach or by the side of river or stream. It used to make my mother crazy, but today, it’s what I remember so clearly and as I write this, I feel the smile on my face.
As time passed and my brother and I had families of our own, and my mother and father divorced, getting together for Father’s Day became more challenging. In fact, I’m ashamed to say that there were years when we weren’t even looking forward to the event. However, even when Dad’s health was beginning to fail, we always found a way to have a family picnic at the beach or meet in a park and share the day. We found a way.
There are “have-to days” in the calendar….days when you have to do the right thing; days when it would be easier not to, but those days you don’t have good options. As I think about this year, I am grateful that we did the right thing…that we celebrated Father’s Day with the three generations coming together as family, because we never know when it will be our last “have to day.” I think last year, we all had an idea that it might be our last Father’s Day with Dad and in spite of the location for the celebration, we made it perfect for him.
We never know and we don’t want to be left with regrets. I have no regrets. I resolved any issues I might have had with my father long before he took his last breath. He loved me and I loved him. Today, I’m left with emptiness in the knowledge that I never get to share another “have to day” with Dad. But I have some of his things. I have photos. I have letters he wrote me when I was little girl. I have gifts he gave me at Christmas. But more importantly, I have a special place in my heart that is reserved just for Dad and this Sunday, that place will shine a little brighter.
It’s so easy to get caught up in the busyness of our lives that we forget the simple beauty of sharing a meal with our loved ones…of making plans when plans seem impossible. But what I know for sure is that those plans are worth making because you never want to live with regret. Hug your Dad especially tight today…tell him you love him…forgive him for past mistakes…because we just never know.
Happy Father’s Day Everyone!
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“My sister is useless. She refuses to help care for my parents.” “My brother doesn’t do anything for my Mom.” “I have two siblings and no one will help me when it comes to caring for my parents.” “My sister lives out of state and when she shows up once a year, all she does is criticize me!” I hear these comments almost daily from family caregivers, usually when someone is at the desperation point. Life no longer makes sense. The primary caregiver is exhausted; life is lived in crisis mode; and now there is anger and resentment added to the mix of feelings. For the family caregiver experiencing the emotional tug and pull of these feelings, the world seems overwhelming and nothing makes sense. It’s time to examine the complexities of what is happening with the ABSENT SIBLING!
It’s possible that you are not going to want to hear the truth. It’s possible you are going to be uncomfortable with what is coming, but you have been uncomfortable for a long time now, right? There are reasons why one sibling is doing the heavy lifting and taking over the primary care for a parent and there are reasons why the other sibling(s) is not. I don’t believe that most children of aging parents don’t want to help. I believe there is a core reason for the lack of involvement and it’s absolutely a must that you find out what that reason is. In my experience it can be many things.
- Your sibling is terrified that he/she will not be able to compare to you.
- Your sibling is terrified that he/she will lose the ability to manage life – that somehow it will be spinning out of control.
- Your sibling fears that you will leave the scene if he/she steps in.
- Your sibling doesn’t know what to do and you make it look too easy. Your sibling doesn’t want to feel inferior to you.
- Your sibling has past issues with your parents that cause him/her to not want to get involved.
At the core of your sibling’s unavailability or seeming unwillingness to help, there is a bigger issue. For many it’s pure terror and your brother or sister is afraid to tell you the reason. In order to move this situation forward, you have to change your thinking from anger, frustration and blame to one focused on finding a resolution. This requires you to acknowledge all of your feelings regarding your sibling and then move on! You have to go through a process in order to successfully make this happen.
Here’s what you need to do:
- Find a way to express all of your feelings. Journal, meditate, talk to a friend, whatever you need to do to reach clarity, do that.
- Decide what you can do, what you won’t do and the areas that you need support and help.
- Set up a meeting with your sibling and speak from a place of love. No anger in this meeting. Explain your challenges and ask for help. So often caregivers forget to ask and think that others know the struggle they are having.
- If your sibling refuses to help, ask what the obstacle is that is preventing him/her from assisting you. You must find a way to get to the very root of the problem.
- Reassure your sibling that there is no perfect way to care for a parent and that perfection is not the intended goal, but rather, the help is what is needed.
- If your sibling tells you that there is simply NO way that he/she can give time or energy, then be clear about what else your sibling might do to assist you. Perhaps it’s cooking some meals. Maybe it’s financial assistance so you can hire some outside help. Maybe it’s taking over some of the business issues i.e. handling insurance claims, paying bills, etc. Your goal in this meeting is to find one thing that your brother or sister can do to help. Remember that you have a veritable pile of things to handle each day, each week, each month and your goal is to get your sibling involved in some small way that relieves the pressure for you.
- Find something that your sibling can do and then turn it over and trust. Over time, your sibling will more than likely be willing to help out in other ways. This is a process. Don’t lose site of the goal.
- Do not worry if the task your sibling is doing is completed in the same manner that you would do it.
- Often the reason we don’t receive the help the need is because we come across to the rest of our family as “all knowing” and “perfect.” You and I know this is not the case, but for outsiders, it often appears this way.
When we are stuck in a situation that feels unmovable, it is imperative that we look at our own behavior and see if we can’t make a shift in the way we show up to others.
If you are really struggling with this, give us a call or send us an email. We are available to help you. There is nothing that says you HAVE to be a caregiver who never asks for personal support and professional help. email@example.com.