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What helps most when you or a loved one is sick or dying? 
Started by Cath1
16 Jul 2012, 4:01 PM

Hi everyone:

I have been thinking a lot about dying lately. I wonder what most helps those of you who may be facing your own mortality or watching as a loved one prepares for their death?

Can you tell others in your life what you need - what you really need most that would help you cope and make a difference? Do you need support? Understanding? Empathy? Space? Talk? Quiet? Tears? Hugs? Sleep? Music? Do you need a mixture of all these and more as life and its challenges in your circumstance change day to day? Can you trust that your family and friends know what to do and say to help you? If not, what can you do to help others help you?

When my Mom was dying many people offered to help me and my children yet very few articulated what that help might look like. I was unable to think about what may have been helpful in the moment as I was feeling so emotional and unable to think let alone make a decision. On the best of days in the best of situations I never find it easy to accept help. That is a serious flaw and one I am trying to correct!:-) I do recall a cousin when leaving the hospital after visiting my Mom tell me she was leaving then because she knew how precious was our time with my Mom and she knew we needed more alone time with her and wanted to give us our privacy. How considerate. Her Dad had died a year before and she was giving to my Mom and me and my family what she felt she had needed when he was dying and did not have the strength to ask for.

While at the hospital as my Mom lay dying, my eldest brother suddenly asked to borrow my car as he came here from out of town and didn't have wheels. He wanted to drive to another city to pick up my other brother who had gone home the day before. An aunt who lives in the same town as my second brother had planned to bring my other brother back to the hospital that afternoon. My eldest brother's request completely overwhelmed me and I became upset but determined to hide my feelings.

Normally, I would hand over my car keys to someone I know and trust without a second thought, but in that moment I panicked and could not say yes or no. The pressure on me to make a simple decision was immense and I felt helpless and unable to express why.

I was thinking if my brother took my car he could get into an accident and such an event would obviously be horrible for him of course and it would distract me from my Mom and I could not handle any more worries. My car for me also represents freedom and mobility and if I had needed to use it to pick up something for my Mom I'd have been stuck. But what I really wished is that my brother would want to stay with my Mom and with me every instant as I did not want her to feel alone even for one second and she and I both needed his support and his presence. I was not thinking rationally and even worse, I could not state my real need. Had I given him my car he would have been gone for hours. In the end, an aunt and uncle intervened and made the decision for us and my brother decided to stick around, yet I still felt upset and overwhelmed as I then felt guilty as well for not being more accommodating of his needs. Perhaps he needed an escape and some space just as much as my Mom and I needed him to remain close by. Our needs are not always compatible with those of others!:-)

I could not articulate why I felt as I did directly to my brother whom I had not seen in many years. I was not strong enough to be sensitive to him because I was not able to be logical and detached or big-hearted and generous in that moment. Later, very late in the evening the day after my Mom died, (and my eldest brother was present when our Mom died - my other brother chose not to be there to witness her death because he was afraid he could not handle it) we had a very good heart-to-heart talk and openly expressed to one another our true feelings about many things that had been unspoken during that painful and stressful time before my Mom died, and many other things that had not been discussed between us for years. We cried together and helped one another see where the other was coming from. East met west under the same starry sky. It was a wonderful healing experience and a memory I will always cherish. I understand my own needs better today and I understand both of my brothers better as well.

It has never been easy for me to state my needs and even harder to ask for help to have them fulfilled. Looking back I wish I had been able to say to my brother what my heart was feeling and trust him to understand and not judge me. I'm certain he wished for the same from me.

Do you have a story to share about your needs and how others factor into them getting met? Can we and others in your life help, and if so, how can you help us help you?

With affection -hugs- xo

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Reply by NatR
20 Jul 2012, 9:44 PM

Dear Cath1

What a great story you shared about the stress and shock brought on when you are facing the imminent death of a loved one,

I totally get where you were coming from - watching someone you love slowly drifting away in death - gives you such a feeling of lost control, powerless to change anything.

Therefore not wanting to hand over your car keys becomes a symbol of keeping control and refusing to let one more thing go wrong.

Forgive me if I have misunderstood - but that is what it seems like to me.

Its a horrible feeling to wait, and wait, and just owe thing that is asked of us is too much to deal with.m also I am sure you were inshock and rightly so.  Our bodies do click over into automatic when our souls are so hurt.

I can't help but think of a program I have beenfollowing on global tv called Saving Hope
It has been eye opening for me - to contemplate what it will be like to be unconscious 
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Reply by NatR
20 Jul 2012, 9:47 PM

Part two

My iPad froze so I pressed enter to save my thoughts

This program has given me lots to think about - what it is like for the person passing and what it is like for those remaining

It seems to me it's harder to be left behind wondering, dealing with loss, while our loved one goes on to a spiritual plane.

This is a topic I am sure we can talk about a long time
More at another time
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Reply by Cath1
21 Jul 2012, 5:48 AM

Hi NatR:

Thanks for sharing your insights with feedback in this thread. You never need my forgiveness for expressing your interpretation of my story because like a work of Art we all see and appreciate different aspects depending on the light of our minds. I just realized I compared my writing to a work of Art - lol - I have no shame!:-) Just so you know, I agree with your take on what happened with my brother - the keys were symbolic of control and deeper issues.

I have never been good at identifying let alone honouring my own needs, and sometimes I have felt shamed to even admit to myself and others that I have any needs at all. That's not healthy.

When I was young I learned how to intuit the needs of others, especially my Mom's, and I spent a lot of time honing that skill to the detriment of exploring and acknowledging my own needs. I have many times in the past blamed others for not sensing and fulfilling my needs when I myself didn't even know what they were. It's always unfair to blame someone for not picking up on subtle or silent clues about what we need, especially when we are not conscious ourselves of what they are, and if we are aware, to then withhold the information out of a misguided sense of unworthiness is simply foolish. I am much better today about naming my needs and asking others to help me get them met if I cannot meet these needs on my own, but it is not always easy and nor is it something that comes naturally to me. I have discovered through more regular practice that it is worth the effort to learn how to honour the fact that I am just like every other human being on the planet with needs.

Without sounding sexist, it has been my experience that women are more likely than men to struggle with needs and seem to have an aversion to stating them openly. How many of us expect men to know what we need without our having dropped even the slightest hint of what they may be? I know in my past I have punished men in my life for being "insensitve" to me when in fairness I felt that if I had to say out loud what is was I needed it indicated to me that the man was not paying adequate attention.

I used to wonder how I could know a man's need and yet he seemed oblivious to mine. As I matured, in my experience and observation, I noticed that men seemed more able to state clearly what they needed and expected without having to disguise it or swallow it with a chaser of guilt. Being intuitive, I didn't always have to wait for a man to tell me directly what it was he needed as I could anticipate it and I wished that a man could do the same for me. I held the prize of my heart waiting for the man who could figure out the mystery of me. Today I see much more value in being less puzzled and puzzling about my needs!;-)

NatR, are you able to ask for help as a caregiver for your family member? If someone offered to come by with a movie and a pizza to help you pass the time with your loved one would that make you feel supported? Can you ask your family members to help you or openly admit to them that you sometimes feel lonely in your caregiving role? Can you say "no" to a request without guilt if you feel too tired to help someone? Can you allow yourself time for yourself, for fun and refreshment without feeliing disappointed in yourself? Would you ask a neighbour or a friend to listen to your worries and woes? How do you feel about having needs in your caregiving situation? What do you do to honour your needs? What works for you?

With affection -hugs - xo
PS - It's late and I veered off topic - I was in rambling mode - sorry! (:   
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Reply by NatR
23 Jul 2012, 12:05 AM

Hi Cath1,
Thanks for your lovely reply.  I was not near my computer so had to wait to write.  I have lost notes occasionally and it is quicker to type it on my computer than phone.

You asked about my coping and ability to get input..friends dropping by etc.  Yes, I do...yes, things are going better in that way...I feel like my life is becoming more balanced.

I do find it hard to admit or say out loud that I am tired or need to say no.  Funnily enough..today was a sick day for me and I did have to say that I couldn't come to caregive.  I felt guilty about it but was unable to do it...so...a rare day indeed...I did take a few hours for me.  I am better now...or I would have had to extend my need to take care of me.

I think that for me...the problem is that I am not caring for a dying family member.  The enormity of caring around the clock for someone who is dying is one thing...and I totally understand that.  For my situation, my family member...the caregiving will go on for many years...many.  I guess that overwhelms me - knowing I cannot do it forever, knowing that others will have to take on the job.  I think that letting go is the hard part for me..as it is with those who are losing a loved one to a serious illness and an imminent death.

Does that explain it a bit?  It is a complex subject...and luckily enough I no longer caregiver as many hours as I used to.  I am grateful to be able to help, to be part of the circle of support...and I am working on taking care of me too.

I just think that caregivers dont like to give in, give up, and to do so is failure.  It is unfortunate that we feel that way...as our gift to others is that of personally supporting and caring for our loved one.  But I well know that we all hit the wall.  We all come to the point where we have to let go and let others help.

I thank you for caring about my situation.  I think that is what is so nice about this forum...that we all are patting each other on the back, giving a hug, giving understanding and support...its a circle.

Thank you again for giving your input and for all that you do.  Your mom was very lucky to have you there for her...and now you continue to be there for others.  
Sending you hugs..
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