Forums de discussion

 
Réponse de Caron
12 mai 2012, 20 h 33

Hi Carrie,


You have been on my mind as well these past few days – I am so sorry to hear that your husband is in bed and not able to enjoy the first days of spring.  This cancer knows no boundaries and takes and takes … how I wish and pray that there will be a cure for this monster.  My husband’s cousin is a scientist in cancer research in the states.  He has phoned many times to see how my husband is doing … and he is so frustrated and sad that even he cannot help his cousin survive.  He told me that there are treatments out there ( in the states ) that are in clinical trials that have helped some people go into remission … but there is nothing yet for small cell lung cancer. 


 I don’t have any answers either as to why we have to endure all this heartache … I so wish I did.  I too have watched my husband reduced down to someone who cannot do much anymore … and it bothers him so much.  We are trying to enjoy our time together as much as possible, in taking day trips to the mountains or getting out around the city at least once a day.  My husband was sleeping and not eating for at least 2 weeks, and then the doctor put him on an I.V. for hydration and started him on steroids and it has helped a great deal … he “woke up” as the doctor put it.  But for several days this past week he was again sleepy … so I wonder what the next week will be like. 


It sounds like you need to get someone in to help with the house etc .  Do you have anyone that can give you time off from caregiving … you need time to yourself as well.  Would it be possible for your husband and you to be outside … so you both can enjoy some  warm  weather.  We had a friend of my husband offer to build a ramp from the dining room to the deck so that he can wheel himself outside … it really lifted his spirit up to do that.


Take care and know that you and your husband are thought of and prayed for …


Carol
 
Réponse de Carriek
20 mai 2012, 4 h 02

Hi Guys,
Its been hard the past while..each day passes to the next with very little change.
We made our trip yesterday to the Oncologist- which was a 5 hour day- an hour and half each way and test and appointment. Needless to say my husband was exhausted when we returned. We have now gotten a wheelchair as my husband is too weak to walk any further than the washroom.  His appetite is still gone... one day he ate but has been so nauseus he cant eat. Palliative care says they will not give him an IV- they say this is the natural process of dying.....Im so frustrated, as the oncologist says no more visits to her, as he will not be taking chemo anymore. (As his body is too weak to endure that treatment)  which I agree for the fact of the long trips, but that leaves us with a family Doctor that we have only seen twice in 7 months, and Palliative care.... thats it.
I dont know if I expect too much, but Im frustrated, sad, confused and terrified.
I would normally talk to my husband (as I discussed all worries with him always) but this I cant.. as he has never discussed his illness. He no longer talks to me other than asking for a drink, back rub etc.
Im not sure what is going on, what he is thinking. He seems very clear on most everything so its not that he doesnt talk. He just does not talk about anything serious.
The hours with him daily... laying beside him, tending to his every need, and holding him are mainly in silence.   
Im at such a difficult spot in this battle, as I do not see my husband at his end- he is still is awake alot, watching TV.. I have to follow his lead on this..its his call. I cannot push him. As I explained before he asked not to be given a time, so therefore may be thinking he has lots of time to say what he wants to say to us-- he had brain radiation so maybe thats part of it... but yet he is so clear on so many things.
I feel isolated (as I have been off work), friends call, or stop by but this is such a mere reflection of my normal busy life that even after a visit I feel lonely,
Family have not been supportive at all-- they feel as though they have done their duty bu stopping in for 10 minutes... they never once ask if we need anything, if our daughters need anything, or offer to help with anything.
I feel bitter and sadly let down.
My husbands family are the same.... I dont think they realize that there are 23 hours and 50 minutes more to his day after their 10 minute visit.
Im sorry if I sound bitter... but guess I am venting....to someone Im hoping will inderstand...
C        
 
Réponse de Tian
20 mai 2012, 15 h 53

Dear Carriek

You are going through hell and understandably so. I don't know what I can say that I haven't said before. Your instincts seem to be right to me. You should follow your husband's lead but I'm not sure that should extend to being silent. Your husband can see his terrible deterioration and is full of thoughts. It's impossible to read his mind but is it possible to ask him about it or somehow elicit some information from him? Can you ask him how he would like to have the twins looked after? If this is beyond what you are capable of is it possible for the hospice worker to do this? Your husband may be more willing to open up to them. You should not doubt that you are already providing great comfort to him. That is the reality although it is overwhelmed by the grim outcome that awaits. Your husband is very fortunate to have you as his partner.

It's very unfortunate that you are not getting much support from family and friends when you need it the most. Although you are limited in what you can tell your husband about how you feel, can you open up to your family and friends? Maybe if they have a better idea of the depth of your despair they will be more helpful. I'm sure the hospice worker has an open door. In any case, for what it's worth, know that we here feel for you Carriek and there's a place for you here.

Tian 
 
Réponse de Cath1
20 mai 2012, 16 h 57

Dear Carriek:


Your anguish is clear. I hear you. Your husband is dying before your eyes and it seems a painfully protracted and agonizing process as you helplessly witness his silent suffering without being able to communicate to him your deepest feelings. You are both suffering, each in your own way.  I worry that when your husband is gone you will regret not having risked talking about your and his sensitive feelings together and I sense you share this worry, yet there are times in life where we must accept that we have no control over others or their wishes or abilities to do as we need. I also understand your instinct is to protect him, but there may be a way to begin these difficult conversations, if you get some guidance on how and when to do so. You will follow your heart and his to find the answer about it that feels right for you both.

I’m so sorry that your husband has reached the point in his disease where chemotherapy treatment can no longer offer him hope.  Do you discuss with your palliative team the decision about no IV? Unless your husband has expressed specific wishes that support that decision, I think he and you have a right to understand why such decisions are made and to feel you are both an integral part of the decisions made for him by others. After all, it is his life we are talking about and he has a right to direct how to make the end of his life as comfortable as possible. If he is unable to direct these decisions you certainly should be able to make them in consultation with the palliative team on his behalf, in my opinion. Can your husband still tolerate fluids and is he able to swallow without distress? Is he in pain, and if so, is it being adequately managed?

I’m glad that at least your husband now has a wheelchair so he can get outside once in a while for some fresh air without risking collapse from exhaustion.  I imagine that when you see him deteriorate to the point of needing a wheelchair it makes the reality of his illness feel all the more unrelenting and cruel. His disease seems to be progressing and his tv watching may be his way of distracting himself, a way to cope with the unbearable and I don’t imagine he is meaning to shut you out. I can only imagine how helpless you feel to do anything of value, something that will make a real difference, and yet daily everything you do for your husband is a worthy and selfless gift from your heart and that makes all the difference in his world! Of course you’re feeling frightened and alone with the burden of your powerful feelings being kept hidden as you must guess what is going through your husband’s mind and heart. You’re not alone though Carrie, we are here for you always. Never forget how much others care about you!

As for your family and friends, could it be that they may be following your husband’s lead just as you are and may feel too awkward to visit for longer periods with him or with you because they cannot discuss openly the truth of what is happening to him and how that makes you all feel? Could it be that they don’t know what to do or say and therefore they shy away from visiting too often? I believe it was suggested to you by our moderator, Colleen, that you might consider writing a list of the things that would help your husband and you, and your kids, and then you could share such a list with friends and family.  I know you were upset before about too many unannounced visits from some family and friends and neighbours, so maybe those closest to you misunderstand your needs?

Do you have one close confidante nearby with whom you can unburden yourself and express your true feelings and concerns and to ask for more support in getting your needs met? I understand how let down by everything you are feeling, Carrie and it is understandable that you may at times feel angry or bitter. You know, as do I, that these feelings of despair will not strengthen you, they will only deplete your emotional reserves, so rather than giving them more power, please use your energy to try and define what it is you need, and from whom, and then please reach out directly for help.

It is no wonder to me that you are feeling isolated, unsupported and confused. I hope you will discuss these important feelings with your counsellor and ask for guidance on how you can cope with your family’s situation, and how you can get clearer information and answers to your many questions. Sometimes, writing down your thoughts on paper and then taking those notes with you to your appointments can help. I hope that your children are also receiving the guidance and support they need.

In the meantime, please know always that I and so many others in our Virtual Hospice community think of you and your husband and children often. Words of comfort carry with them no magic cure, but I hope that they will give you a meaningful measure of hope to add to your own. You are courageous as you face the future without knowing exactly what it may hold. In that regard we are all in the same boat as none of us know for certain what tomorrow will bring. I hope that you will always have the knowledge that your heart is brimming with love and goodness.

It is your love, patience and willingness to accept the future while making your husband’s life more comfortable by being there for him and with him day and night, despite your own fears and feelings of loneliness, to ease his fears and to assure him that he is not alone, that matters most. Even the presence of your body, laying silently beside him, holding him closely and loving him truly, will have such a peaceful and lasting effect on his soul! As you continue to guide your family through this dark time in your lives, please remember that the sun will one day shine brightly in your life and warm your heart, Carrie. You are not alone. And even if your husband is never able to tell you in words how he feels during this time, I can guarantee you that with your extraordinary love and steadfast support he knows he is never alone and he knows now and will always know that he is deeply cherished.

With affection -- hugs xo,
Cath1   
 
Réponse de Carriek
21 mai 2012, 0 h 21

Dear Cath & Tian..
Thank you... Sincerely, Thank you... I needed to hear your words of comfort and guidance and support.
I need to correct something that I have maybe not made clear. 
My friends.... they have been WONDERFUL. My best friend has gone far beyond anyone's imagination..... meals, coffee dropped off, taking our daughters Mothers Day shopping, stopping in doing laundry.... endless gestures of support and understanding and always there for me.... even text messages in the middle of the day, just to say "thinking of you"... and a two other friends that have gone out of their way to be there for me and done many things as well.
I guess Im just overwhelmed by the lack of family support and it bothers me.
I dont understand the bitterness that I feel. I have never been a bitter person...
Maybe its natural, being thrown into this whirlwind of fear, isolation, emptyness, anger...  I guess they are all feelings that are new to me, as I have always been in control- with a powerful career, and a fantastic life.
In fact at one time I used to always say "I want to do more to give back- because life is SO good to us" so I volunteered at a homeless shelter, many organizations and causes.
Now....... all of that seems like long long ago.
I hate this, I really really hate this I want it to be a bad dream, I want to wake up out of this nightmare to live with my husband and children knowing what we know now...............
but know that is never going to happen.  
Im sad...very sad.
I will from this minute forward take your advice on not being bitter, as its not a feeling that I am used to and not a burden that I want.
It truly is an added weight that I dont have the strength to carry.

My husband is not able to go outside or at least he wont, he just really wants to be in bed. Mostly asleep or silently watching TV. Im not sure that I will get him out in the wheelchair for the walks... just taking one day at a time.
Thats all I can really do

Thank you guys for being there for me..... I feel a closeness to you both, its nice knowing that when I pour out my heart that you will always answer me.... I need and appreciate that, beyond words.

:( Carriek            
     
      
 
Réponse de Tian
21 mai 2012, 0 h 50

Your words mean a lot to me Carriek. If I have reduced your burden by an iota it's been well worth my while. I just wish it could be more than an iota. Mortality reminds us that we are all in this together.
 
Réponse de Cath1
21 mai 2012, 3 h 58

Dear Carriek:

I am reading your message and wish, like Tian, there was more we could do to help you get through each day, but thank you for writing back to let us know that our support is helping you feel heard and understood. We all need to feel that someone "gets" us and that our messages make a difference to you means the world to us both! Your thoughtfulness touches me deeply!

Boy, am I relieved for you to know that you have such an amazing best friend, and a couple of other friends to help you. You closest friend sounds like the kind of person who will be by your side no matter what which is so fortunate for you! There is no underestimating the value of a loyal and loving friend! I'm sorry your family is not able to be as helpful and supportive, but family dynamics in many a family are complex. Don't waste your precious energy ruminating about the whys and why nots, just try to forgive them for their inability to be there for you in the way you need and that will free you to focus on those who kindly come through for you and your husband and kids!:-)

I do hope you will be kind with yourself and tolerant of your feelings, even those that may disturb or upset you. The range of emotions you are experiencing is completely normal and you have remarkable insight to see how dwelling on the bitter feelings will only cause you to feel more hurt and abandoned and spent. You are so wise! Your gratitude for each moment you have with your husband, and he with you and your kids, and your appreciation of your close friends, especially your best friend are all wonderful ways to pay mind to the positive in the midst of so much negative emotional turmoil. Whatever you are feeling, it is no reflection of your character - none at all - you are struggling and you cannot judge your beautiful heart by the darker emotions that every human experiences when living with extended periods of stress.

I can relate to how naturally you wish you could just awake from this nightmare your husband and you and the kids are now living, and it is wonderful that you can express your frustrations honestly here with us where you know you will be understood and accepted. Please never apologize for yourself or your feelings - feelings have a will of their own - and know that you are doing a superhuman job of being as optimistic and as strong as is humanly possible! There is nothing more exhausting than worry and fear and feeling out of control, but your stamina is incredible, Carrie! .

This terribly sad situation you and your family is in has been going on for many long months which must feel extremely discouraging for you all. It's not like you can simply turn off your feelings or make everything better as you wish, and yet you are doing it Carrie, you are surviving this horrendous pain and you are keeping it all together for those you love with all your heart! You will ultimately find the inner strength to do whatever is required of you, Carrie, I just believe it!

You are so much more capable of coping than you give yourself credit for and you need to acknowledge how hard it has been on you, and how well you are handling everything. It's not easy for you, nor would it be for anyone, to endure such a heartbreaking jolt in your life, but you get up every day and do it all again, and when you lay your weary body down at night, I hope you get rest in your dreams. Don't ever think for a minute because you sometimes feel panicky as you witness your husband's life fading away that somehow your feelings of terror make you weak. You are a rock! You are, beyond a doubt, a hero to your husband and kids and I feel more than privileged to know you.

Sweet dreams tonight, Carrie, I hope you will find some peace and I hope you always feel especially admired and cared for because you are!:-) 

With affection - hugs xo
Cath1 
 
Réponse de Tian
21 mai 2012, 12 h 23

Yeah...What Cath1 says. Took every single word right out of my mouth.
 
Réponse de Carriek
28 mai 2012, 4 h 00

Hi again
My husband was hospitalized 5 days ago, I am typing this as I sit wrapped in a blanket at his bedside.
He is sleeping now most of the time. Barely able to get out of bed. He hasn't eaten in 24 days. Drinking only water and some ensure.
I continually ask " how this could possibly be happening".
I have asked his family to help ... To take part in a 24 hour schedule so that someone is always with him. And they have agreed. That started Friday. It's going really well.
I also suggested that we keep a notebook next to the schedule where we can keep a log - of info that we all want to know... If he slept calmly, any pain, if he went to washroom etc.
That is going really well
He gas been having anxiety attacks that get him very upset and scared. So we log that too.
I don't know how or where I come up with these ideas but they prove beneficial to all of us.
I'm having some feelings that I need some help with ....
I know that I explained to you that in front if my husband I was ( and still am pretending that everything us okay.. I smile, giggle, act like everything is fine and don't usually ever cry) well now I'm not sure if it's because if that.... I seem numb
I can sometimes partake in conversations without a tear shed, depending who I'm talking to. It's almost a calm.
Then at other times if talking about feelings rather than facts I cry easily.
Is this normal.
It scares me. I realize that I cannot cry all the time. I know that my husband does not want to see tears ( I think because it scares him and makes it seek too real ) but I'm not understanding ..z
The fear of nit being by my husbands side when he dies scares me ... Since we are taking turns at the hospital I'm afraid of the guilt I will feel if I'm
Not here then.
I'm not sure of what happens when someone dies. Are you given time in room to say good byes. Is there a time limit to staying in the room with him.
Does the hospital allow time for the immediate family to arrive.
I'm so afraid
This whirlwind of emotions, fears, questions and sadness has consumed my days, nights and my life.
It's hard to imagine my life without him in it.
I will truly miss him by my side experiencing us growing old together. Cause that's the way it was supposed to be.
His hospital room is full of framed family pictures that I have brought in. To remind him of all if the people that truly love him.

C
 
Réponse de Cath1
28 mai 2012, 4 h 06

Dear Carrie:

I am here reading and I will write to you a longer response but until I have it composed I just want you to know I am listening to you. Everything you are feeling and thinking is normal. You are not alone.

With much affection,
Cath1 xo 


Nos partenaires
Questions-réponses
Questions-réponses

Découvrez ce que les Canadiens veulent savoir

Consulter un professionnel
Consulter un professionnel

Notre équipe d’experts est là pour répondre à vos questions à propos des maladies potentiellement mortelles et de la perte d’un proche.

Simplement envie de parler?
Simplement envie de parler?

Participez aux forums
de discussion.

Livres, liens et bien plus
Livres, liens et bien plus

Recommandations de notre
équipe

Programmes et services
Programmes et services

Services offerts aux échelons
local, régional et national

S’abonner à l’Infolettre
S’abonner à l’Infolettre
  • logo
  • © Portail canadien en soins palliatifs, 2003-2024.