Discussion Forums

Reply by Carriek

08 Apr 2012, 2:08 AM

Dear Cath1,
You are certainly an exceptional person to share your feelings and offer concern and compassion to what we are going through...and I thank you sincerely. I am not offended by your words of your move and I am so sorry that you and your children experienced that. It must have been a devastating experience and Im proud that you managed to have the strength and no-how to recover and lead your family ahead.
My husband and I have been together 16 yrs, as I said we were married 3 months ago-after his diagnosis.. I guess Im just not wanting to accept this, I know it, I live it, I cry, I worry.... but deep down I dont want to accept it.... Im not finished loving him, having him by my side, sharing my thoughts with him each day, raising our twins together.... I have so much more love to show him and its just not the way its supposed to be.
I feel bad to say that, as I feel I disrespect all others that have lost a partner...but I just cant accept this... I somehow want to scream "No this is my husband, its not supposed to end this way"

Councilling-yes after 5 months we were referred to a councillor, we have each seen her twice.. she is very very nice, and has a truly genuine heart. Our daughters will see her next week..

I am having a problem with some things that you (all) may be able to offer some help with-

VISITORS-- My husband is sleeping on and off all day/evening. We seem to have no alone time, no time that we can sit and talk, cry or just hold each other. Suddenly a knock comes to the door. People do not call first they just arrive. If I open the door and whisper "he is sleeping" they step in and start removing their shoes (without me inviting them inside) and they stay for hours and hours.....
today 2 people arrived for a 4 hour visit... after my husband had went for a sleep and I had decided to lay down as I felt complete emotional exhaustion. We had not had eaten supper yet and had not expected visitors at all.
I have a small dog that runs to the door, barking hysterically... so I feel a need to go running to the door (instead of hiding and just not answering the door) as the barking and door bell will wake him.
it almost makes me feel prisoner in my own home. I have never welcomed un-announced visits .. but it seems as though people think our home has become an open visitation site, they do not seem to understand the need for privacy, quiet or just space. How do I tell people no visits ( even if they are family) when they are standing with one foot in the door??

CURIOUSITY- I have been bombarded with questions- regardless of how personal they are: medications, fears, Doctor's comments, feelings, prognosis, you name it and the questions are delivered with an expectation of detailed answers..... How do I say that is personal, that is more than we wish to share? without sounding rude? (most invasive questions come from his family) but friends too.

ADVICE: People that have had no experience of living with anyone in my husbands condition insisting that they know exactly how, when and what should be done... most of all family, but friends too.

VON: Do they not remove their foot wear when they enter someone's home? The VON nurses, just come in with shoes on, I am insulted. Not sure ... ??

Please help....
Carrie

Report this post

Reply by Cath1

08 Apr 2012, 3:24 AM

Hi Carrie:

I hope you're sound asleep as I write this note to you, but if you're having trouble sleeping and want to write back I am here for a while.

Thank you so much for your gentle assurance that my words did not wound you! That gives me great comfort.

After reading more of what you have to contend with I too feel exhausted!;-) What you are experiencing with unannounced visitors is my worst nightmare! I have always been a very private person and do not appreciate anyone, even family coming to my home to visiti without invitation. I know many people live differently and are more relaxed about receiving company but it's not the way I am. I feel for you and it is a real dilemma that we must figure out how you can get your message across without adding more burden to you for feeling you may offend the well-wishers and concerned family and friends.

You must be a very accommodating and patient person because I imagine if I were in your position I would not be so considerate of others' feelings as they seem so inconsiderate of yours. I have always wondered how people lack sensitivity to the need for privacy when one is in crisis, but that's because I would want it and expect everyone would feel the same way. Not so. There are many people who don't know how important it is to guard one's private suffering as they may be more open about such things. You must first honour your own personality and needs now, and your husband and children's of course. You should be able to have a nap when feeling exhausted by labouring day and night with emotional turmoil.

I hope you will post a sign on your door, "Do Not Disturb - Resting - Please call before visting and thanks for your understanding." This should take care of the neighbours. You must summon up the courage to explain how you're feeling about the visits directly with family. Let them know that the best way they can help you is to call and ask what you need and make sure you tell them that sometimes you will need to say it is peace and quiet, space and privacy that you need most. Ask for their understanding and be firm in stating your needs. I hope this strategy will help. What do you think - could you do this?

The prying questions seem to be par for the course, but your ideas that you wrote about above are completely appropriate and no one should take offense. If they do, then it's their problem. Truly, with all the other more important things you have to worry about, it is not fair that you should have the additional burden of worrying what other people think. Your refusal to answer to inappropriate questions should be enough to put them in their place.

God bless you Carrie! You are such a good person and your husband and you and your kids don't deserve this to have happened to you. Sadly life is so random and no one deserves to face serious illness and death, especially the young and those like you and your husband with so much to look forward to in your lives together. I understand your feelings of rage at the unfairness of it all. Please don't worry about how anyone else feels now, not here when speaking to us. You are safe to express whatever it is you feel and by getting your feelings out it may help you make room for the feelings inside you that I imagine change day to day.

Until next time, I'm thinking of you and rooting for your and your family!;-)

Cath1

Report this post

Reply by Tian

08 Apr 2012, 4:27 AM

Dear Carrie

While I have been struggling to compose a response to your last post Cath1 has come along with a superb response which I endorse wholeheartedly. But I think I am neither as nice nor patient as either of you. Stick to your priorities.

Tian

Report this post

Reply by Carriek

08 Apr 2012, 7:08 PM

Thanks so much, I will definitely take your advice on the sign.... I have also been very private. But am at my witts end. We had never locked our doors when home- but had people just walking in, we would be sitting crying, sleeping, talking and turn around and have someone standing in our kitchen... so our house is now locked up like fort Knox. But now the knocking, ringing the doorbell is insane..and lengthy visits (simply innapropriate)
Our daughters forgot to lock the door the other afternoon and my husband was sleeping (I was out) 3 people came in our house and were standing hollaring his name up the stairs (we live in a two storey) until he woke up and came downstairs. I came home.... they had to have seen the shock on my face, but they remained here another hour. Part of me feels mean to feel intruded upon......but
also I talked to a few people about thinking of putting a sign up, but during conversation I got the impression that they thought the sign would be for everyone but them !!!
My patience is just wearing thin...
I actually rec'd a message on facebook this morning from a girl that I barely know, in fact dont even know who she is or where I could possibly know her from, her message read "Is your husband taking narcotics?"
Im dumbfounded !! UNBELIEVABLE !! I have not answered. We live in a fairly small town- My husband and nyself are very well known by all so it seems that we are bombarded.
I hope you know how much I appreciate your advice, care and concern...I have felt so alone til now.
Love Carrie

Report this post

Reply by Cath1

08 Apr 2012, 7:55 PM

HI Carrie: Happy Easter! ;-)

I can totally see you confiding in someone about the instrusions and them thinking they are not a part of it all. It is maddenig that people can be so thick! Very few people seem able to take a clear hint. You are not being rude or mean whatsover to be concerned and thinking of ways to extricate yourself from these very insensitive people, no matter how well-intentioned they may consider themselves.

I will think of some more ideas about what you can try to resolve this issue and will write later today or tomorrow. This is a very real concern and it is effecting your ability to cope. Your husband deserves to maintain his dignity and privacy while suffering and you need all the emotional support you can get, and in your case that means being given the respect for your need for space and privacy as well. The message must be delivered in such a way that there is no room for interpretation. If a simple note on the door doesn't get it across, write a letter stating that it no one is welcome without calling and that the door bell disturbs your husband's rest.

The Facebook intruder is disgusting! I'm so sorry you have to deal with all this extraneous pressure. These days with your husband and daughters are precious and no one has the right to rob you of the special time you spend together. You have a right to define the rules for visitors or to deny visits altogether. I hope this Easter will afford you some space and time to make memories with your own family without any intrusions.

Cath1

Report this post

Reply by Carriek

09 Apr 2012, 12:07 AM

Thank Cath1,
Im sorry that I am asking for help with this, but do not know anyone else to ask and thought maybe you could offer suggestions. I am just overwhelmed. Im not sure if these are natural feelings or not.
Caron, I have been thinking of you, this Easter Weekend, hoping that all is well for you.
Please know that Im thinking of you and Im so thankful to have all of you to talk with.
Carrie

Report this post

Reply by Cath1

09 Apr 2012, 12:22 AM

Hey Carrie:

No need at all to apologize as it is precisely why we are here, to try to help you as your find ways to help yourself and your husband cope with everything you are experiencing.

I have not yet thought up any creative approaches that you may consider as possible solutions to the intrusive people problem, but I'll give it more thought and if a light bulb goes off in my head I'll share the light with you!;-)

As for the VON nurses removing their shoes, I have no idea if they have some policy that prevents them from doing so, but maybe it's time you assert your preference in this regard and see how it goes over. Some people don't naturally remove their shoes at the door, although most people in my experience ask when entering someone's home for the first time. If you don't want to be so direct, again, a big note at the door reminding visitors to please remove their shoes would help.

Cath1

Report this post

Reply by Cath1

09 Apr 2012, 12:31 AM

Hi again, Carrie:

When you wonder if your feelings are natural in terms of feeling upset by being so put upon by others, please know that your feelings are quite natural from my vantage point. As Tian pointed out to you, you are far to patient and kind for your own good.

Your emotional reserve is spent each day and you simply don't have enough strength to be distracted by the demands of others. I really hope that neither your husband or you will blame yourselves for not wishing to include others into your private heartache. Keep the fort locked up for now and don't feel one iota of guilt for being protective of your husband, kids and yourself.

Will talk to you again soon, Carrie!;-) hugs! xo

Cath1

Report this post

Reply by Tian

09 Apr 2012, 1:29 AM

Dear Carrie and Carol
I am very glad that you have found each other. I've been wanting to expound on some issues and now that I have returned from holiday travelling I'll do just that even if VHcath has already essentially said the same thing. Writing does not come easily to me and I tend to have a blunt manner in expressing myself but I assure you it is not a reflection of insensitivity on my part not. My heart aches for you and your families. But I am not in your shoes and can only imagine the intense pressure you are under so you can do what you will with my remarks.

I think hope is a very delicate issue. I believe that hope is like air - we need it to live. However there are times when all we can hope for is the least bad of bad eventualities. We know we are mortal and one day, one way or another, we will be without our spouse. Nevertheless for that situation to rear it's ugly head completely out of the blue can take the ground away from your feet. Doctors are the people whose responsibility it is to give you the prognosis but doctors being people, it's fine to seek second or more opinions. However it is a recipe for disaster to have faith in people on the fringe who say they have the solution. If your husbands' condition is terminal the window of hope is closed considerably. You have every right to scream LIFE ISN'T FAIR. The gulf between hoping for your husband to recover to hoping for his passing to be as comfortable as possible can appear infinite but that may be what you face. That is difficult enough as it is and when others think that is equivalent to giving up and additionally want to put your husband through the grind of futile treatments that is practically too much to bear. Unfortunately not everyone comes to acceptance at the same time. Professional guidance can be invaluable.

In my opinion you should follow your husbands' lead. If he doesn't want to be informed about the reality of his condition then don't tell him. But that does not necessarily mean that you should tell him what he wants to hear. Your husbands are very ill but they can still see what is happening to themselves and futher deterioration may lead them to say you were lying to them and lash out at you. I think in many circumstances it would be better if you said you don't know which is probably be the case. In this time with everything upside down I think it would be good to maintain constancy in how you relate to each other and I'd be surprised if you had an answer for everything before the cancer struck. And did you tell him everything he wanted to hear then?

Carrie, as far as the disruptive intrusions are concerned I totally agree with Cath1. Outside your family don't concern yourself too much about other peoples' needs. With time it will become abundantly clear to all why you did what you did.

I may not respond as quickly as I would like but I am here for you Carol and Carrie.

Tian

Report this post

Reply by moderator | modératrice

10 Apr 2012, 6:00 PM

Hi CarrieK,

I’d like to offer my thoughts on your query about visitors.

People want to help and often don’t know how. They visit (and overstay their welcome) without realizing that this type of “help” is not helpful, at least not for you and your husband at this time. It also seems that dropping in and visiting is a common custom in your small town. While you understandably want to dedicate your energy to your husband, your children and take care of your own needs, you can’t deny the community of which you are a part.

I think you need to be very clear with everyone about what your family needs right now. Along with asking them for their understanding and to give you privacy, tell them how they can help. Perhaps they could:

Clean the garden

Do the grocery shopping (give them a list)

Run errands

Make some frozen meals

Drive you or your children somewhere

Telling people how they can help and giving them updates can be very tiring. Do you have a trusted friend or family member who could be the “door keeper” for you? Find someone who could update people with the news – only as much as you want to share – and who could coordinate help. There are several free websites that can organize and coordinate help in exactly this way.

Tyze

Lotsa Helping Hands

CaringBridge

Here’s an article Tips on Visiting that the Virtual Hospice team wrote. Perhaps you can share these ideas with your unexpected visitors.

Carol, how are you managing with visitors and questions? How was the bone scan yesterday?

Report this post

Enter your email address (the one you used when you joined Canadian Virtual Hospice). We will email you a new password right away.

Email Address:

Become a Member

As a member of the Canadian Virtual Hospice, you can ask a question confidentially on Ask a Professional and contribute to the Discussion Forums. Join for free now to connect and share with others.

Discussion Forum members receive a monthly newsletter. You also have the option to sign up for the Canadian Virtual Hospice monthly newsletter.

Please fill in the information below.

Nickname:*

You will be known to other users only by your nickname. You do not need to reveal your identity by using your full name, real name or email address. Choose a nickname that is easy for you to remember.

Email Address:*

Your email will not be visible on the Virtual Hospice website. We will NOT sell, distribute or misuse your email address.

Password:*

Confirm Password:*

Country: