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Reply by Tian
04 Jun 2012, 4:21 AM

Hi Winter

It's bad enough when people don't recognize all the effort you are expending to help your mother. But it's really tough when your mother herself complains. Realize that it is her disease talking and keep the faith in yourself that you are doing the right thing. It's difficult as hell but continue to hang in there. When all this is over you should have no doubt that you've been acting as a devoted daughter and you have wonderful, supportive husband, 

Tian

 
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Reply by claudia c
13 Jun 2012, 7:14 PM

Hi Winter,
I'm so glad you're continuing to tell us how you're doing each day. I hope that's bringing you some comfort to know that you can 'let your hair down' and just say everything that you're feeling knowing that we'll listen empathetically and never judge you for what you're thinking and feeling. I think you're amazing and very strong and determined to do what's best for your Mom each and every day! 
Never mind what anyone else around you says -  it's YOU - JUST YOU - that you have to look out for - to keep up your energy to be there every day for your Mom and to keep on asking the medical staff about what's happening, so you can prepare yourself and your Mom for what lies ahead.  And your husband and son want to know too so they can be ready to be there to support you.
My Mom died 3 years ago.  She said to me one day in the hospital - do nothing more for me.  No thing.  And I realized she was ready to pass on.  I knew her beliefs were very strong and that she was sure she would see her husband and parents and brothers again in the afterlife.  I knew that was comforting her, but it did not comfort me!  I kept saying/thinking you can't go Mom.  You can't leave me.  I'm not ready for you to go and leave me alone. (Even though I have a great husband and 2 beautiful and loving daughters.) This was very hard for me to go through and to accept.
I'm sure you're feeling similarly and I can only say now - 3 years later, that yes, she was ready to go and I have to accept that.  And time does heal - eventually.
But this is all so emotionlly draining and hard!
So, please take care of yourself so you can keep on somehow coping with all you are faciing and will still have to face.
ClaudiaC
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Reply by Cath1
13 Jul 2012, 12:49 PM

Good morning, winter:

I hope things are going better for you and your Mom these days. I love the message ClaudiaC left for you and along with her gems of acquired wisdom I can feel her support for you!

It's been a month today since we last heard from you. I hope you know we have not forgotten you, winter! Should you find the time and have the need to reach out again we are all ready to listen and we will respond. Take care, winter!:-)

With affection -hugs- xo
Cath1
 
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Reply by winter
15 Jul 2012, 3:46 AM

Hi its me, been awhile...been so busy with mom......

mom has been moved to palliative care unit....which has 3 beds in it....do i like it, good god no....do i think she is getting good care, i think i would say yes and no, and my hubby would agree, on that....he and i have went to hell and back, emotionally and almost to the point, we were thinking of taking a break from one another, which neither of us wanted, just we didn't think we could handle being around one another, ....but after long talks, and doing some things apart....which i was grateful...for ....because he didn't realise that i needed space, he just loved me so much he was   trying to take care of me, he was trying to take the heat, from my moms demands....

i got so stressed i was bedridden for 5 days, and could not leave the bed, doctors orders.....i thought i was dying....not mom....which was not funny......so with that i understood, that i could not be there all the time, no matter what was happening to mom, i needed me time......for me.....it is so hard, for me to stand down, and let others take over, i mean the nurses.....

again my family have abandoned me the only ones that come up, is her sister and hubby and there son....that is it no one...else is coming up,....that is there decision....which is crazy...

i have given up, with them and there hate of the place....they should be there for there sister and not because they are in disagreement with policies...i cant help that....

as for mom, she is still holding on.....she is down to i say half of her size,.....it has been a rocky road....her pain is bad.....she is up to 7.5mg morphine, hourly with 2 half injections for extra pain, which she is getting almost all the time...

to both of us she should have her pain med increased....both of us have no say to be honest, it is up to a case worker, and nurse practionier, and the head of the palliative care, they have there opinion, so in the mean time we hold her hands and tell her to breathe...

she is a bit better, she tells me she loves me, which i never thought she would, she is alot nicer...

she is telling us she hates this life, and is afraid....but can't stand being in a bed any longer....it has been 2 months, and one wk...since they said she was dying or going to die...

so the doc was in before he went on holidays, and so i asked when he thought she would pass away, and he stated this and i will quote... is i don't know why or what is keeping her alive....the rm 2 has went threw 2 people already and rm1 she has been giving maybe a wk...if that....

so i don't know what she has left other than she is giving up, but if i was kept in a rm, 20 by 20 with no windows open, and and only seats 2 and never to see the out sides......every again.....with a siding door....that is it...the end of life, mom has given up asking to go home, she knows she never can......she know shes is dying....she asks me when, and i said i dont know when.....time will tell....but what can i say.....

we are allowed to bring the dog...which is a large 100lb lab, who loves going there and seeing everyone, and all the old people, and mom too......

it is so hot also....it is into the 40s here, and the humidity is so strong, that it is thick as theives....lol.....

well i will sign out with this

i am doing alright, i would not say, that i am ok with this....i mean mom dying, i am having trouble accepting her dying, i guess it is because this  has been going on for so long....

i am thinking alot of the past, of dad, and mom....and things that happened many yrs ago...oh well...

thank you all for all the kinds words.....

i really think of all yous and what you have all experienced, and your guidance...

thank you 
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Reply by Cath1
15 Jul 2012, 4:44 AM

Dear winter:

I'm so happy to hear an update from you tonight - thank you!:-)  While it is great to hear from you I also feel sad to hear that the palliative care ward is not living up to your best hopes for your Mom. I suppose all like everything else palliative care teams are not all equal in terms of quality care and communication skills, yet I also imagine that if your Mom was left langusihing in a regular hospital ward she would not receive as much attention. Your idea of what your Mom needs in terms of pain medication may not be possible as I think the palliative staff have to be very careful not to over-medicate your Mom and they may be worried about the possibility of an overdose. I do think however that whatever the reasoning is behind these decisions you and your Mom have a right to question them and receive direct answers.

It sounds like you have gone through quite a tough time yourself with your own health and emotional well-being I'm sorry to hear it but not that surprised. I think caregivers often become ill while immersed in the care of their loved ones. Is there any heavier strain one's body and soul? It's great though that the experience while frightening hit home the realization that you must look after yourself first if you are to continue caring for your Mom.

As well, all the tensions between you and your husband are natural in the circumstance as you are both dealing daily with so much stress. Cracks in the foundation begin to appear when relationships are burdened with intense external pressures. I'm glad you were able to arrive together at a way to cope better that will help you stay together! Your marriage, your primary relationship with your husband is so important as you know and I'm glad your husband was able to give you some of the private space you need. I can so relate to that need as I often over-extend myself, (my choice:-), and the only way I replenish is by taking time out for myself when needed. I'm learning to allow myself this special "me" time without feeling guilty whatsoever - the more I do it the easier it becomes - and I hope you will feel the same. You deserve to honour your own needs!

It's too bad that your Mom's other family aren't able or available to step in to visit and care for her when you can't but it is so hard to judge what others can do. Some people simply cannot face the truth of a loved one dying and while they may not openly express their fears or denial, I suspect that many people who appear selfish are really more sensitive than shows.

I understand how hard it feels for you to have to stand down and let others - even the nurses - stand in for you to care for your Mom when you are not there, but I hope you will know that through it all in every way possible you are ensuring by taking necessary and healthy breaks that you will be able to continue to stand by and stand up for your Mom! Not everyone is capable of going the distance in this sad and terribly draining situation your Mom is in but you are doing it, winter, and you should be very proud of your efforts and every sacrifice you are making for your Mom. You are your Mom's guiding light and her dearest comfort!

I am so glad that your Mom is able to express her more tender feelings of love for you and that you have been able to receive her healing words into your heart just as your presence, your words and your love soothes hers! You will never have to wonder how your Mom feels about you, winter and because of your loving devotion to your Mom when her need is the greatest, she will never wonder how you feel about her!

Sending you wishes for strength for the hard days ahead and peace for all the days after.

With affection -hugs- xo
Cath1      


   

 
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Reply by Tian
15 Jul 2012, 1:41 PM

Dear Winter

So sorry to hear about your mother's deterioration and the effects it's had on you. I understand that watching your mother suffer is terribly agonizing for you but that does not mean she is getting indifferent care. It really is impossible to predict how much time someone has left. The staff are human and there are limits to what they can do but it is their obligation to explain in clear language to you why they are doing what they are doing. You can be a big help to them by letting them know when your mother is in pain and how their efforts are working or not. Complete pain control may not be possible but there are always options.

The lack of support you are getting from other family members is also very sad. At this point you should not expect it to get any better and try to put it out of your mind. If it does get better, it's a bonus. I'm glad you are back on track with your husband. Whether you are physically together or apart you definitely need each other. It's wonderful that your mother was able to express her love and gratitude for you but it's possible that she may revert back to her negative attitude toward you. That would not change the fact that your mother is lucky to have you as her daughter. Remember to look after yourself.

Tian 
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Reply by NatR
16 Jul 2012, 2:17 PM

Dear Winter,

Reading your words I get the feeling of frustration and fatigue that must be your world right now.

I also understand how you felt like you would die too, it is an overwhelming experience to be there for someone else - who needs you so much.

It is also difficult to watch someone die and be in discomfort.  As a family member you should be able to be involved in the discussion about pain meds, about how much, and what effects will happen...to have it clarified for you.  They may be doing the best they can but to you it feels like they need to do more.

As a caregiver looking on from the sidelines, I know that is as difficult a spot to be in...as the person you care for.  You are deeply involved on all levels and only wanting peace and no pain for your mom.

Hang in there...try to remember that you are doing the very best you can.  No one can predict the time of death, that is one thing that is out of our hands.  I have watched in amazement that the life will of a person can keep them going long after it was thought impossible.  The only thing you can do is what you are already doing so well.

Your presence matters, your input, your concern.  It is wonderful that your husband is there for you..and its not possible to bring everyone in the family on board.  There are so many reasons why others cannot (so it seems from the outside) support you.  But you are a strong person - and you are doing what you need to do.  

One thing I have learned is to forge ahead and do what the right thing is for me to do, and not waste time or energy on trying to figure out why others arent there with me.  We can only do so much.  Your energy is needed for you.

Keep in touch and know that others think of you and support you, and wish we could do more to let you know you are not alone.
And above all else, your mother is so blessed to have you there beside her.

Sincerely,
NatR
 
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Reply by winter
17 Jul 2012, 2:24 AM

well, the last few days have been so hot, that i have been really sick and unable to be with my mom, twice a day, so i have been going up from 8am to 2pm and then going home and laying down, i guess the lack of sleep, and stress, and heat, have final taken a toll on me.....

my mom is in major pain, and can't get any comfort at all, nothing seems to be giving her relief...she is telling us she is fed up, and tired of this bullshit....she says, god is so full of himself, that can't he see what he is putting her threw...

we just listen to her...and let her rank...which is what the nurses have told us to do....

i am so thankful for one of mom childhood friends, she is coming up and giving us a break in the afternoon...at least a couple times a wk...she herself is sick, but comes up....she is such a wonderful woman...

the last few days, mom has been all over the map, with massive pain, and then it seems her body is hurting, and she can't get any comfort at all, which i feel is normal, see she has been laying and in a bed for the last 2 months, since she was takin in, with renal failure......she has not sat in a chair, or walked since then....which is heart breaking in itself for me....to see, how much she would love to do so, but her body won't hold her....

when she throws up, her bowels go at the same time....this just started.....
this scares her, and we just try to comfort her....she asks us what is going to kill her, and we just don't have any answers...cause there are so many variables....

i am not mad at mom, or angry, or frustrated....i just wish, i could do more for her....and with my health issues, and my pain threshold, i just wish i do more ....but the reality is i am limited....
i wish i could have had her at home, like i did with dad, but i was unable to.....but i know in my heart i could not have cause mom is very demanding...and the nurses say the same thing that mom is very hard, and they often wonder how i looked after her for so long.....

there is so much not just mom, and her dying, but we are in a court battle from the car accident, and that could be going on for yrs, and then all the surgeries we have to endure over the next few yrs...and then with our income gone from the accident, cause we have the no fault bullshit in ontario....which means the ones that we hurt, and didn't cause this horrible accident we pay, in the long term...we are 2 yrs now, and i had to learn to walk, and now waithing hip replacement surgery and all the rehab, it just doesn't end....and then we have decisions, after moms death....as to what house we should keep....a house in town, or a house ours on the river, but our house, is a cottage, and we have alot of work, and have no laundry rm, and septic, and well, and no foundation, and we have to do alot of work with wood, and then we have that decision, or a house that is pretty much good to on...it needs some work, but has everything we need ......but we don't want to think about that,....but we can't afford both, so what do we do......we are trying to be a family, and manage so much.....all at the same time....dealing with lawyers...and nurses and doctors, and death....sometimes we are just so taxed.....we have lost my dad, in 2009, father in law 2011, grandmother in 2010, mother in law 2006, then our car accident 2010...and now mom....

for me, i just hate seeing her in so much discomfort....cause it tears my heart out...not being able to help her....when she is crying and screaming in so much pain...

we got her a person that sits with people who are palliative, and this person will sit with her in the early mornings, as she requested, but when she meet the man, she doesn't want a person there, but the person is only going to be there 2 days, that is it...just to see how it will go....but this is mom....time will tell...

moms urine is hardly at all., so, we are in a stand still, we don't know how much time she has left, and we try to do what we can....but she doesn't see that....even the nurses say and feel the emotional burder we do....

moms hands and feet are swollen, and she is developing brown specks on her hands....and her face is swollen....

her hearing is going, she can barely here...we have to yell at her now....she shakes alot, and is jittery....

when i joined on her, it was cause i needed people who understand and have went threw what i have and am still going threw....

i thank you all for listening, and that is what i need.....i am not mad, or angry, before, i was just so exhausted, cause of no me time....i am finally feeling a bit better, cause of the time out i have taken, and my much needed quality time with my hubby, and son...and our dog....and being at home....which is so nice.....

thank you for reading and responsing, and for your kind words, and advice....

take care....tell i have more time.....

good nite.... 
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Reply by NatR
17 Jul 2012, 2:48 AM

Dear Winter,,

Your note came in and I wanted to reply.  I can see how much you have gone through and how much loss and stress you have had.  It must seem endless and overwhelming - I wondered what to reply to you that would help - one stranger to another.

Then at the end of your note you said it all, that it helps just to be heard by real people.  To have someone you can say whatever you need to say - to help unburden your heart

I am only one of the many who participate in this forum.  It is good to read that The forum is doing what is needed -connecting people - sharing real stories and pain, having others hear us and validate that we are all doing the best we can.

My heart goes out to you as you take each day as it comes.  I think you are doing your best to support your mom, and most importantly taking care of You the Caregiver.

I know others will write as well - and I encourage you to be strong.  Everything you are dealing with - the legal battles etc will all play out and you have to remember to take it one day at a time.

You sound like a very caring person and I am thinking of you as you continue this journey.
Please keep us posted as you have time and energy - and know you have a cheering section waiting to hear how things are going this week.

My best wishes to you - rest well 
NatR
 
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Reply by Cath1
17 Jul 2012, 3:09 AM

Dear winter:

I read your post tonight and I wish there was something I could do to relieve just some of your stress but all I can do really is listen and remind you that you matter and you are not alone. You and your family have been living in a nightmare with so many deaths to mourn and so much other stress to deal with - I cannot imagine how your Mom and you all keep going.

Even in light of all that you are going through, the agony of watching your Mom's disease take her health and happiness and hope, and your struggle just to live your life in some of the most difficult circumstances I have heard, you continue to show up for six hours daily to be there for your Mom. I don't think everyone in your situation could manage everything as well as you have been doing - and for so long! Quite simply, your commitment to your Mom and your unconditional love for her is beyond touching, winter! It so wise of you to accept and honour your limits and it's great to hear that your Mom's close friend is stepping in to help her and thereby she will help you as well!

I am glad you are able to pour your heart out to us and that it helps you to know others are listening and caring about you. Whenever the pressures build up and you need a friend to be here for you, please know you will always find a virtual friend here for you. We cannot give you a real hug or hold your hand as you cry, but we embrace you nonetheless and keep you close in our hearts. Always remember no matter how hard the moment, you have people here who do understand and we are virtually with you. Wishing you strength until your Mom's painful journey is over. I am praying for her sake and yours that she will not continue to suffer much longer.

Goodnight, winter. Take care.

With affection -hugs - xo
Cath1       
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