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Coping - Caregiving as life passes me by 
Started by pudding
17 Nov 2012, 9:23 PM
My Mom had spent five months in the hospital, was admitted in March and released in August, she was diagnosed with bladder cancer, they removed her bladder and did a colonostomy, she has been home since August, which is great, but am feeling exhausted. I turned 39 this year, and feel like my life is passing me by, even though I know that she may not be around much longer. I have chosen to move back home, just bought a condo last year, and now working par-time, so financially feel like am struggling all the time...dad and brother help out, but feel exhausted al the time. I want to do lots of lots of things like start a family, but am feeling my own life is secondary to what she is going through. frustrated.
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Reply by moderator | modératrice
18 Nov 2012, 1:22 PM
Dear Pudding,
Welcome to Virtual Hospice. I'm so glad you found us. Caregiving is not easy and the injustice of your mother's illness for you and indeed your entire family comes through in your message.

There are other people sharing on our forums who understand what you're going through. I will direct them to your thread. In the meantime, you might want to read this one.

Caregivers: Can we talk honestly? 

Colleen
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Reply by Plum1
19 Nov 2012, 2:48 AM
Dear Pudding,
Colleen has made me aware of your message, and I am happy to make contact with you. Certainly I can hear your frustration and mixed emotions. You mother is very important to you, and you want to be present to her. But, as you say, caregiving can be very demanding and all-consuming. And it poses such huge choices as you are describing.
 
I can relate to much of what you are describing. A few years ago, I chose to move from Ottawa, where I was living and working, to Montreal as my parents and an uncle were all reaching critical moments in their life journeys. They could no longer manage on their own, and yet the idea of lettng go of their homes and so many possessions was overwhelming to them. So I was faced with helping them all to make these huge transitions and move into senior's residences. Since then, dealing with their increasing health issues has been ongoing. My uncle has died, but my parents continue to need much support. If you read the sharing on the theme: Caregivers: Can we talk honestly?, you will read of some of my emotional struggles. I am always amazed at the feelings which arise as I meet the many challenges which come along.  In the midst of this, I have needed to work out a way of balancing the commitment of being present to my parents with activities which are life-replenishing for me. Like you, I love my parents, and yet I know that it is important to have some "life" apart from my involvement with them.

An important learning in caregiving is that we have to take care of ourselves if we are going to be available in a meaningful way to those we are supporting. It is wonderful that you have found this hospice site, and are using it to gain some care and understanding.  I can relate to the resentment that can creep in when you feel that you are having to put aside your plans and hopes for your own life. It is very difficult. The frustration and resentment take energy, and just these feelings can be depleting. It can help to express them to those who will listen. I am certainly ready to listen. Sometimes just expressing them and being heard can bring relief.  I hope that can be the case for you.

At the same time, I hope you can begin to look at ways to give spece to some of your needs. You may wish to look into what services are available in the area where your mother lives. Perhaps, it may be possible to access persons who can take on some of the caregiving for at least some hours during the week. You mention that your father and brother are showing some understanding. I am glad to hear that. Caregiving needs to shared. Trying to do it all ourselves will most definitely lead to physical and emotional burnout.  Are you able to identify other family members or friends of the family who can be supportive? If you can have some time to yourself, you may be able to discover what re-energizes you and uplifts you. That is different for each one of us. I have been grateful for yoga classes, joining a choir, getting together with friends, or just going for a walk in nature.

I realize that you are also referring to much bigger life needs, such as beginning a family of your own. Do you already have a significant other? Perhaps we could talk more about this. Please know that I feel very much for your struggle. Your life is not easy, and I would like to support you as much as I can. 
Plum1 
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Reply by GirlWithTheBlackBeret
19 Nov 2012, 1:08 PM

Hi Pudding,

Welcome to the VH community. I’m sorry to hear about your mom’s diagnosis. 

Like Plum, I can also relate to your situation. I was a caregiver for my mom who had advanced cancer about six years ago.

You decide to take on the caregiver role because you love your parent but have no idea how stressful it’s going to be caring for someone so ill.  I agree with Plum’s comments above about: taking sometime to care for yourself, looking into respite care and engaging others to help with the caregiving.

Could you sit down with your dad and brother and discuss the amount of work that’s involved with your mom’s care? Maybe divide up some of the load? I was fortunate to have my sister and a few of my aunts involved in my mom’s care.  We discussed and agreed upon a schedule, our schedule and roles were clearly defined so that we did not have to worry who was helping out on a particular day. This was key in reducing my stress because this set up allowed me to work part time and have a bit of a life outside of my mom’s care.

Even with this, I had some of the feelings you described. I was single and just turned 30 when she got sick. A few of my friends were getting married and having kids. While I was happy for them, sometimes it frustrated me. Then I started to think “hey maybe it’s good that you are single right now, you have more time to devote to helping Mom out”. I also remember thinking that the situation was not going to last forever, I focused on doing my best and trying to give her the best care possible and even though I did not want to admit it then, that she was dying and there would be time for me and my life after hers has ended. To help avoid dwelling on these feelings, I also tried to focus on getting through things one day at the time.

I hope this helps,

GWTBB

 

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Reply by Plum1
19 Nov 2012, 4:12 PM
Dear Pudding,
I hope you have a chance to read GWTBB's response along with mine. I agree with all that GWTBB says, and I am glad that she is responding to you with the perspective of a younger person.
Life, we learn, does not always unfold in the ways we might hope or aniticpate. We can be torn by feelings and desires which are in tension. It is quite a discernement to make choices for the best in each moment and each unique situation. And our feelings change from moment to moment.
Like GWTBB, it may be very important for you to be able to work, and so the challenge is to find a way to work, and attend to your Mom's needs, while always making sure you have the support and time to yourself that you need.
How are you feeling today?
Plum1
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Reply by Cath1
19 Nov 2012, 8:48 PM
Dear Pudding:

I'm sorry that your Mom's health is doing poorly. Her suffering is affecting not only her life but yours and the others in your family. Illness is such an exhausting experience. There's no easy way around it, when one we love is seriously ill it changes the feel and the fabric of the lives of everyone involved. Love is a glorious emotion, but when someone we care about so dearly falls ill, the thorny side of love pierces our hearts. It is your love for you mother and your fear of the future that may be causing you to feel so conflicted and uncertain. Your sense of urgency may be because you see how life can change so suddenly and you feel compelled to live more fully your own life. I feel for you, Pudding. You are so young to be placed in such a tough place right now.

I think it's great that you are reaching out here with us and I see that Colleen, Plum1 and GWTBB have given you valuable advice and support!

For me, when my late mother was ill I had choices to make. It was never for me a single decision or a black-and-white, either-or kind of choice about caring for my Mom. Her condition and her needs changed quite often and I learned through the experience to be flexible, and to be patient and compassionate with her, and with myself.

There were indeed times when I felt totally exhausted and discouraged by the demands placed upon me, not so much by my mother, but by the reality of the situation that neither of us could deny or escape. It was not her fault, nor was it mine. Life just handed us the situation and we had to cope as best we could. My Mom had a mental illness all of my life and she later developed other illnesses and dementia in the last five years of her life. She died on December 5th, 2010.  

Seeing your mother failing physically and/or mentally over a prolonged period of time is heartbreaking. Not knowing how long it will all last is also very challenging because sometimes you just need to see an end to the suffering in sight. Sometimes you may wish, as I often did, that there was someone else that could take over for a while. Your brother and your Dad are helping some which is great because you can encourage one another to share in caring for your Mom. I understand how you worry that your own life and future is being consumed by your Mom’s situation. Don’t panic. You will find a way to adapt and to cope.

In my Mom's case, there was not many people in our extended family available to help me help her, and she was exceedingly private so she didn't want others around her when she was at her most vulnerable. Sometimes I felt completely controlled by my mother's needs. Sometimes I indeed resented the heavy load I was left to carry and often alone.

Over time, I realized though that I did have a choice in what I could and could not do and that was a profound realization for me. It freed me to feel and act as my heart and my conscience directed. With practice, I struggled less over time with guilty and negative feelings. Simply knowing that I was choosing to care for my Mom out of love for her made me able to care for her better and with less emotionally sensitive and destructive baggage to tote around. Sometimes dwelling on and anticipating what we must do is a bigger burden than just doing it, I have found.

Feeling I did have some choice in how much time and energy I could devote to my Mom's care actually helped to dissolve my feelings of frustration and resentment. Dark feelings have the power to crush your spirit and rob your energy reserves just when you need all the spirit and energy you can muster . . . and hope  . . .  you need to always hang on to hope for a better day ahead!

I realized caring for my Mom 
as best as I could was enough. I was not going to abandon her but neither could I sacrifice my whole life for her and I know she would not have wanted or expected me to. I had to be true, not only to my Mom, but to myself. I had to define my boundaries as I was respecting hers and as the situation evolved. I had to find a way to adapt that allowed me to be the daughter I saw myself as being, the daughter she loved and needed, the daughter she deserved. Even thinking about all of this made me feel selfish, but it was necessary for the benefit of us both! My Mom’s situation meant that I had to redefine my priorities, name the things I knew I could do, and accept that some of my dreams would be postponed. I know without any doubt that if I were in need she would have been there for me, just as she had been many times in my life. 

Reality dictates that life does require of us sometimes to change our lives for a time so that those we love will have help. Today, I have few regrets. Had I chosen to do less, it may have been fine in the end, but I needed to do all I could at the time in order to feel I did what was right for my Mom. Her needs did take precedence over mine for some time, but I don't honestly know how much longer I could have kept going had she lived for many more years. I was very tired. I would have had to re-evaluate how much I could do at some point down the rocky road. Some people and their loved ones have such a long journey to travel carrying illness with them and it must feel very unfair.

Pudding, the only thing I can suggest for you from my experience in caring for my Mom, is to be as true to yourself as possible and decide what you can and cannot honestly handle, and then do what you can. Allow yourself the freedom to be satisfied with whatever it is you decide you 
can do out of love for your Mom. Nothing more is expected of you. Do your best and then you and your Mom cannot lose.

I have seen many people in my life who are much better than I am at attaining a healthy balance in their relationships. They know their limits and stay within them. It can be done. I learned over a lifetime to forgive myself for not being perfect and to accept that I am human. That seems such an easy lesson to learn, but for some of us it is the hardest to live by. My mother was by far my best teacher in life and I have her to thank for showing me how to reconcile that we are each a little bit sinner and saint. We are all doing the best that we can. That’s all we need do.

I hope you will feel warmly embraced here among us at Virtual Hospice. We are with you.

With affection -hugs- xo
Cath



 
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Reply by pudding
20 Nov 2012, 12:43 AM
Hi everyone, I believe that I am just exhausted and trying to see the light...I am grateful that my brother and I are single right now and have all the time to give my Mom all the attention she needs and are not torn with other family obligations. With that said, am constantly getting bombarded by both my Mom and Dad to get married, they don't have grandkds, and want to see both me and my brother get married, realistically thats impossible emotionally, financially, etc.....not the right time. 

I realize I am being resentful, and don't what to expect in the future which makes it more scary...and realize if I don't spend the time with her now I may regret as I will never get this time again. Am finding its hard to strike a balance, I try to spend time on me, like getting massages and seeing my therapist/counsellor, but I do get easily get drawn back into being at home and thinking of al the things i could be doing. I even find going to work part-time enjoyable because its a distraction.  Am just tired of waking up everyday exhausted, and know am sounding selfish...nothing compared to what my Mom is going through:(  
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Reply by Cath1
20 Nov 2012, 1:10 AM
Dear Pudding:

You are not sounding selfish. You sound like a 30 year old woman who has suddenly had the weight of the world put on your shoulders.

It's great to hear that you take time out to see a counsellor. I hope you find that it helps. How about any of your friends? Are any of them going through similar challenges with their parents - do you have friends you could confide in who might help you feel more supported?

I think because your Mom has had a serious illness that caused her to think about the possibility of her own death, she is likely feeling that she may not have all the time with you that she once took for granted and that may be why she and your Dad are putting the pressure on for you to produce grandkids sooner than later. No matter the circumstances, that kind of decision is yours alone. You should not have kids to appease your parents or to fulfill their wish. If and when the time is right for you to have kids, you will know it. Release yourself from any guilt about having kids.

Please don't beat yourself up about how you are feeling. You are exhausted. That is a sign from your body and mind that it is time to rethink what you can do to help yourself feel stronger and more able to cope. Sometimes we simply cannot do it all alone. You may want to talk to your doctor or therapist about depression. Could you be experiencing symptoms of depression that could benefit from some medication? It's just something to consider. Do what you can to ensure that first you are not suffering, then you will be in a much better place to help your Mom. It's not at all selfish to look out for your own needs first! It's the sensible thing to do, I think.

You are a sweet daughter who obviously loves her Mom! Please know that we can all see your care and concern for her! Let us show you our care and concern for you. You deserve it, Pudding!:)

With affection -hugs- -xo
Cath1 
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Reply by Cath1
20 Nov 2012, 1:13 AM
Dear Pudding:

I realized I shaved off 9 years from your age. My message remains the same for you as a 39 year old young woman!:)

With affection -hugs- -xo-
Cath1 
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Reply by Plum1
20 Nov 2012, 4:16 PM
Good morning Pudding,
My multi-layered life does not allow me to be at the computer very often, but do know that I am with you in spirit, and sending you energy of courage and peace.

I, too, am very happy to hear that you are seeing a counselor. That should be a great support and a source of clarity around the choices you are facing. You can only follow your own deep truth. And, as I have already said, you can expect many different feelings and needs rising within you. These are not selfish! They just ARE. i hope you can be gentle and patient with yourself. Allowing a feeling and even sharing it can sometimes ease the power around it. And then, you may be able to let it go, or allow a new feeling to emerge.

Your love for your Mom will likely direct you to be there for her at this most vulnerable and sacred time. You will, in the end, live with a much greater sense of serenity and gratitude.  And yet, as both Cath1 and i have said,,being there as best you can depends on your own self-care.  As Cath 1 says, you may be suffering from some depression which leads to the exhaustion. Many factors may underlie the depression. You and your counselor can explore these.  It is great that you are going for massages, and that your part-time work is a "distraction", or a needed balance.
I am not sure that either of us has mentioned the value of exercise- even a good walk. When you feel exhausted, you may not feel like exercise, but they are interconnected.

And yes, you really do need to let go of the pressures from your mother and father to have children. You can understand their desire with compassion and love, but you can only folow what is wise for you. That is what will be best for a child you eventually conceive. What you can now offer your mother is your love and tenderness, deedpening your relationship. It is a time to share all that you may not have shared before. It is a time for you to be as fully you as possible, and allowing her to be as fully herself as she can be. On your side, living that to the best of our ability will be life-generating.  It is not only giving birth which is life-giving, and I speak as someone who has never given birth. I believe that I have been life-generating in many ways.

Do keep in touch. We are very happy to be of support. And I hope your network of support can grow. Remember to be gentle with yourself.

In Peace,  Plum1

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