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Somebody help me! Too many people in the house 
Started by Pooka
21 Jul 2012, 4:58 AM
I feel as though I am falling apart. I am tired, I feel beat down, and past depression, and despair. CoNFU"SED!
I posted that my husband has been placed under hospice. This happened Monday past week. Since then -he has 4 sisters- my house has been a parade of them and their friends. My husband who was once in so much pain, and had started to accept the hospice is now in total denial! This week alone I have had so many people coming through my house...it's noisy. We have been meeting with different hospice people to get the one we need, and my inlaws want to put in their 2 cents. I feel like going outside and screaming so loud. I want to just blow up.  Now all of a sudden my husband want to start gulping down megace and is in total denial. I am so tired of this roller coaster of one day one foot in the grave and the other one---he is alright. He has minimized his condition so much until you would look at him and think the dr had made a mistake.

I feel in once sense wrong, mad, frustrated...I am tired...I am tired of it all. I feel like I may have a heart attack. I HATE THIS SO MUCH! My house is like a night club and I feel like I have lost all control. I feel like I am having a nervous breakdown.
Yes we desire that our love ones get off hospice, but I feel like I have moved in to a realm of psychological dysfunction.  I am trying to cope and process this thing. I know I probably sound like a monster but I am so tired....I want all of this to be over. I want to just go away myself. I hate waking up in the morning.
When his family comes around, he puts them first. You would think all that I have done, that he would be sensitive to me and our son. You would think it would be quiet, reflections but its a damn 7 day party at my house!!!!!

I WANT TO SCREAMMMMMMMM!!!!!
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Reply by Cath1
21 Jul 2012, 6:14 AM
Dear Pooka:

I didn't see your post until now but since I read your message my heart is beating faster and I want you to know that I am here with you! You are not alone, Pooka!

I know Carriek went through a very similar experience with her inlaws and people "taking over" her space in her own home. I am glad you are screaming your pain and frustration as you are in an awfully heartbreaking situation! Your husband's family may mean well, but they seem to be undermining you and any and all progress you have been making. Don't let anyone wear you down!

I suggest you tell your husband that you need to have more quiet time with just him and your son as you need to work out a plan and make a decision about hospice. Your husband's denial should not be fed by his family, but you cannot control what they say to him. Perhaps with his cooperation you can limit the time they spend undoing the progress that together you have made?

It must be driving you crazy to be so emotionally exhausted by all the ups and downs - the positive and encouraging steps forward only to fall steps behind! You are tired, Pooka and that's a real understatement so be kind to yourself and after you get some sleep you will have more energy to re-tackle this issue. Even when people are very ill and dying, they are human and can seem not to appreciate the care, the time and attention, the sacrifice's made for them by loved ones. I am sure that your husband does know and appreciate everything you have done and continue to do to help him. Your love and concern for him is unquestionable and he knows it I'm sure! Don't let your doubts - especially after a very long and hard day - creep into your mind and take over your heart. You will get through this,. Pooka and while you are going through it we are all here with you to listen, to care and to assure you that we hear you and we understand! 

Wtih affection -hugs -xo
Cath1           
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Reply by moderator | modératrice
21 Jul 2012, 3:15 PM
Dear Pooka,

My heart goes out to you. Incredibly, the emotions and situations your are experiencing have been lived by others. You are not alone. As Cath points out, Carrie wrote of similar strain with family and a busy household too. See the thread Husband is dying, pages 3 & 4, and 9 &10.

Carrie has not been on the forums for a few days now, but I'm sure she would like to talk to you about this. The best way to reach her is to post a message in a thread she has already participated in.  For example, post a message to the thread CarrieK-for u and she will get an email notification that a new message has been added.
I hope this works.
Colleen 
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Reply by Brayden
24 Jul 2012, 3:01 AM
Dear Pooka,
I too would just like to say that I can hear the terrible pain and frustration that you are living with. We here have strongly suggested to others in your situation that you must stay in control and not allow others to have a negative influence in your decision making. Keep talking honestly with your loved one and tell him how these problems are affecting you. As his primary caregiver, you cannot affort to get wiped out. You must find a way of getting respite for yourself. We are all only human and there is a limit in how much we can give without burning out ourselves and not being good to anyone. Cath1 has very good ideas and I hope you can take some of the advise.
Please keep us posted as we want to not just give you advise but to carry the burden with you. My thoughts and prayers are with you.
Brayden
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Reply by Cath1
30 Jul 2012, 2:59 AM
Hi Pooka:

I have been wondering about you and how things are with your husband and how you are coping. Has anything changed since you last wrote to us? I hope things have improved but either way, I just want to remind you that you are never far from our thoughts and we remain here to listen to you when you need us.

When/if you have a quiet moment please let us know how you are.  

With affection -hugs- xo
Cath1      
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Reply by Pooka
01 Aug 2012, 11:22 PM
Hi Everyone, a lot has happened since the last post. Well, I really don't know where to start. I am feeling so low. I am tired and overwhelmed. I almost feel as though I will end up in the hospital because I have not taken care of myself like I should. I am worn out and I look it. The emotional drain has sunk in. We have had so much company...I wish it would stop. Hospice has started coming. Still trying to adjust. My husband is working so hard to prove to them that he doesn't need them. He perks up and pretends everything is okay.  Is this normal? help me. I went back to work Monday and my boss wanted to send me home. They are all so worried about me because it is taking a physical drain on me. My aunt is here and she sees the things my husband does. All day long he will not let anyone help and pretends all is okay. He is lively when people come over. Talking to him, you would think we are all liars and that he really doesn't need to be on hospice. When I come home, I can't eat a meal without him asking me to do something, I understand. I don't expect him to lay down and die, but I feel like not acknowledging his condition may be making things worse. He will not allow the nurses to help him. He tells them he is okay. He is now risking walking alone because he does not want my aunt to help. But when I am home, I have to walk with him, go to bed when he goes, and I am up all night because he has the urge to urinate all night. and when he goes it is less than 4 oz...each time. He sits all day and refuses to go. I know...I don't want to complain, but I am falling apart. I just don't know what to do. Help me...
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Reply by Cath1
02 Aug 2012, 2:59 AM
Hi Pooka:

I am heeding your cry for help and hoping I will be able to help somewhat with your situation. When I read what you describe your husband's life and yours is like these past few weeks, I get the impression that you are travelling down the same stream together but you are each sitting in separate boats.

You have come to terms with your husband's illness and understand that he cannot recover. He seems yet to catch up with you in terms of fully accepting that his days are limited by illness. You want to spend quiet quality time with him as you know the opportunity to share with him will soon no longer be there. He is busy connecting with others and probably by doing so hoping to stay feeling connected and hopeful about his life and his future.

It seems to me that your husband is most interested in distracting himself from having to face the truth by focusing his time and attention on others. By putting on a brave performance when others are around he may feel that he is not only able to fool others, but mainly it seems he wishes to fool himself. You cannot afford the luxury of denial but you can't force acceptance on anyone no matter how much you feel it would help.

Pooka, your husband needs you to meet him where he is in his journey. He cannot be expected to catch up to the place you are as quickly because it is his life on the line and he may be afraid to face it. I think it is completely natural for your husband to try and keep up appearances as his body betrays his will to live. Your life is going on and will continue after your husband's life ends.

The best you can do in the circumstance is to be kind and as patient as possible with your husband and with yourself as the boats you each sit in continue to take you down the stream at a different pace. While neither of you may feel you have much if any control over your lives right now, you do have some. Try to accept that you cannot hurry your husband's acceptance or inspire his cooperation in his own healthcare unless and until he is ready. He may never accept things as you do and that is something you may want to consider.

In the meantime, try to get as much rest as possible and work on accepting that you may not be able to make the changes you would like to see for your husband's life or yours. You are going through this painful and exhausting time and feeling very lonely and unsupported, and I understand your frustration and feelings of helplessness. You are not alone with your feelings, Pooka - many people experience the same feelings you are now struggling to deal with.   

Can you speak with your husband's hospice team and ask for some guidance? I think it would be worthwhile to raise your concerns with them and ask for their support and any suggestions that could help you feel like this hellish experience of your husband's and yours is understood. It's so important that you keep reaching out and expressing your true feelings as it is not fair that you should have to keep everything bottled up inside.

We are here for you Pooka, to listen and to assure you so that you won't feel alone. I know that our presence cannot fix your problems, but I hope your heart will feel wrapped in the warmth of our care. Keep us posted as to how things progress and write any time you feel the need. We will be listening and caring. You are doing better than you think Pooka - it is by no means easy, but amazingly, you are loving and caring for your husband every single day and that is outstanding!

Please never wonder if you and your feelings are important too as you and they are, but sadly while your husband may not be able to show it right now, I'm sure he knows it much more than I. I think he needs a just a little more time in his boat before he can find you in yours.

With affection -hugs- xo and prayers for your husband and your and your family
Cath1   
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Reply by Pooka
10 Aug 2012, 5:07 AM
thank you Cath1 for your insight. I hear what you are saying, but right now, I am kind of angry. My husband feels I am the reason he is on hospice and that he really doesn't need to be on hospice. He said that I won't let him do anything. All day long he entertains people that come over our house --he laughs and talks and even tries to manipulate the nurses, now he does not want their help. He will not allow them to bathe him. Yet he poops on himself all during the day. Waits until I get home to clean it up. I told thr hospice-- don't be surprise if he gets rid of them.  He has since started taking megace and it has given him a euphoric boost of energy. You mention he is in his boat. Well I feel so angry that I want to get out of the boat. He is desperately trying hard to do things around the house, be in total control of the house. I HATE BEING HOME! His ego is magnified. I am too exhausted to bring it down a notch. I am sick of people coming in my house. I am sick of him sitting and entertaining and making us look like we have lost our mind. My aunt witnesses it. I spoke with the hospice and she said it is because of his will to live and this usually happens with young couple like us. Perhaps I am wrong. For the entire summer, I waited on him hand and foot---for the past 3 years....it had gotten to the point that he could not put his clothes on. I bathe him, he had absolutely no energy. Now during the day my house is a zoo....everybody eating and partying. Maybe it is his way of coping, but it is driving me insane as it is just not realistic! What do I expect him to do? Help my son and I make it through this transition by preparing for it. By talking about it. I feel detached....trying not to have regrets and move past this anger.
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Reply by Brayden
14 Aug 2012, 2:54 AM
Dear Pooka,
I too can feel how you have  come to the end of your rope. It is so understandable because you have correctly described how the two of you are not living on the same page. Your husbands behaviour may well be a result of him wanting to maintain his dignity by showing everyone that he is still in control. It is very hard for many men to give that up. Another situation could be what Dr. Chochinov found in his research "Dignity Therapy" patients that maintain complete disavowel of their prognosis are more likely to be suffering underlying depression. As Cath1 suggested, you may need to talk to the Care Team people and get them involved. Above all, you need to find a way of dealing with your anger by getting some respite. Your life is important too. Please keep in touch.
Brayden
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Reply by Cath1
15 Aug 2012, 5:20 PM
Dear Pooka:

First, let me apologize for not responding to you sooner as my daughter was married over the weekend and I was not able to write back to you until now.   

I understand that you are desperately seeking a way to cope better with your husband's circumstance in which you find yourself inextricably entangled. Your feelings of rage and anger are completely understandable, Pooka, but more importantly than understanding why you are feeling this way is discovering a healthy way to deal with your volatile feelings, a way that will prove helpful to you and your husband both. A talk - a very frank talk - with your husband's hospice guidance counsellor should help. Be assertive and make your feelings clearly known and don't hold back from expressing the truth about the hurt and anger you feel as you seek their help. What you are going through is too much for you to bear alone and there is no good reason why you should have to!

The loss of control seems to be at the bottom of the anger and resentment you likely each feel and you each need to find ways to express your fears, frustrations and feelings of futility. Your husband, despite his behaviour and outward appearance seems to me to be suffering from deep denial as he tries to claim or regain some sense of control over his body and mind and his destiny. His pretense is in my opinion a defense mechanism that protects him - in his own mind - from having to face the deterioration of his health and to accept that his body is betraying him. He is not yet it seems able to accept that his death is in the near future. I empathize with him and how extremely painful a process it must be to come to terms with such a dire situation as is facing the end of one's own life.

You as well, Pooka are feeling and responding to the lack of control your husband's illness and his response to it and all that it means and imposes upon you and your current life and your hopes for the future. You may feel very trapped by your situation and may be questioning whether you can cope with everything such as is your husband's and your life in reality. Your self-doubts are a part of the painful journey you are on and I hope you will not permit guilt or shame to be a part of your feelings as you deserve to feel proud of how resilient you are and how honourably you are standing by your husband even in the midst of you justifiable feelings of anger. Your distress call must be answered - and soon!

You may naturally wish to escape from the consequences of your husband's denial which is making the last part of your lives together feel like a living hell on earth. I am so sorry that you are feeling so helpless and exhausted and abandoned and that you are left alone to bear on without the proper supports in place to help sustain you emotionally and psychologically. That needs to change. You need, as Brayden wisely advises you, respite.

Mostly, Pooka, you need hope that change in terms of acceptance and cooperation is possible before it is too late for your husband. I am not sure it will be possible as your husband's attitude may be the way he has always dealt with difficult things, or it could be an effect of the illness and/or medications. You will know better than anyone if there is hope for him to come to terms with himself and meet you once again in your boat so that you can travel the stormy seas together until the end. You will need help to recognize hope when you see it as your feelings of overwhelm have coloured your perspective. Hope will most likely come to you in the form of another human being who understands your feelings, allows you to unburden your heart in confidence, and who will gladly and compassionately support you through it all. Your need is urgent and I hope you will communicate your need to someone whom has the experience and skill to help you!

Your suffering, though different, is every bit as valid and as difficult as is your husband's. Please never wonder about the love you feel for your husband, as your darker feelings do not diminish the light in your loving heart in any way. Illness takes everyone touched by it to the brink of emotional collapse and reminds us that we are human and very frail at times, but it also has a way of reminding us how strong we are and just how invincible is the nature of love and loyalty. I hope you will soon be reminded of your strength and resilience and that your faithful love and devotion for your husband and your son will reward you with a newfound peace and all the hope your heart deserves. You are not alone. Reach out and ask for more help as I am hoping your cries for help will be heard and answered - soon!

With affection -hugs- xo
Cath1     
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