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Reply by KathCull_admin

24 May 2014, 1:46 PM

Hi Mary
How has your week been? I imagine it has depended on how George has been feeling. Have you been able to get some rest?

Hi Grammakim
How have you and Chuck been?

As both you and Tracie say memories can take you to a place away from illness.

Enjoying (finally) the warmth of the sun.

Katherine

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Reply by Mary M.

24 May 2014, 7:55 PM

Hi Katherine-
I have had a pretty hard week. I had told you all that my husband was so ill. I (and his doctor) thought it might be the end. It wasn't. He has rallied, but he is very weak and so confused. I cannot seem to stop trying to reason with him as if he understands things anymore.

He is telling me things that are so off the wall. Last night he thought I woke him and gave him a bolus from his pump plus a clonazapam. He thought it would kill him but he took it anyway. I did not wake him. Believe me, if he is asleep, I let him sleep. He said he thought "Oh, well so I take this and I just don't wake up" I told him it did not happen. He does not believe me. Can I ever say how hurtful it is to hear something like that? And he still thinks it.

I clean him everyday. I cook for him everyday. I make sure he has his meds on time and in the proper dosage. I change his clothes when he soils himself. I toilet him. I keep the house running- laundry, groceries, house repairs, lawn care, cleaning. And he thinks I would do that to him. How do I cope with that? What new hell will rear its ugly head next. How much more? I am so upset. I know he cannot help it, that changes how I should feel, but it doesn't. What is wrong with me? Why can't I just let it go?

Because he has been so ill, I have not had any time for me. I am afraid to do anything that would leave me "out of pocket". I was trying to swim on Tuesdays, but I cannot be reached if there is a crisis when I am in the water. It would be unthinkable should something happen and the PSW not be able to call me. I feel helpless, hopeless and guilty for feeling like that.
Mary

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Reply by KathCull_admin

24 May 2014, 9:28 PM

Dear Mary,
Your responses sound so normal. What we feel with our hearts and know with our head can be two very different things.

I completely understand that you want to make sure you are ‘reachable’ when not at home. That is one of the wonderful things about this community – you can post and read responses without having to leave your home and know that if George needs you – you are right there. I read a quote that said, "You can do anything, just not everything". Be gentle with yourself.

I was wondering if, in addition to the forum, speaking to someone perhaps a counsellor, social worker or spiritual care provider might help support you as well. Of course you may already be doing this - I don't want to presume. You may already know about Bethell Hospice as well, which I think is in your area - but just in case I thought I would provide the link.

I don't know if you like pizza, but would it help to order one (or something else) in this weekend - to eliminate cooking and dishes for at least one meal...

Thinking of you Mary
Katherine

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Reply by Mary M.

24 May 2014, 10:56 PM

Hi Katherine.
My husband's doctor is associated with Bethell House. I had had a meeting planned with a counsellor in the Bolton office when George suddenly took his turn for the worse. You have reminded me that I need to reschedule that. Thank you. I sometimes think I might be losing it myself. I will call her on Monday to see if I can go in on my Tuesday.

Honestly, I am looking at my posts- I really am having a pity party. You guys have been so kind and understanding to me. You GET what I am saying. I do have friends from work who call, but they cannot really understand. You all do. This is why I have pored my heart out so much. And I know you all are there for me. And I thank you all from the bottom of my heart.
Mary

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Reply by JennJilks

28 May 2014, 12:24 PM

Mary, I totally understand your concerns and fears. We all desperately want to do the right thing. I was so afraid of making a mistake. Truthfully, you make your decisions and do the best you can at the time.
I must assure you that if you cannot cope, you can find a placement. You cannot promise to have a good death at home, especially if you do not have the right supports in place.
A good death
One where the patient is comfortable, properly medicated, and at peace with the end of their life.
A good death is one in which the four dimensions of good death are met:

Physical (pain control, breathing, fatigue, bedsores),

Spiritual (accepting death, doing a life review, seeing meaning on one's life, finding peace),

Social (being conscious; communicating with family/friends, careworkers; communicating needs, wishes; sharing thoughts, feelings; having closure; saying farewell; a quiet, private atmosphere) and

Emotional/psychological needs (accepting help; not being a burden; being peaceful; having self-esteem; enjoying simple pleasure by releasing hope by gaining peace; making choices).

If you are not able to manage this, you will find excellent care in a hospital or a hospice.
It sounds as if he has some dementia of some sort. From my work I have learned not to argue with people with dementia. If he gets an idea in his head, simply agree or apologise. You don't need to have the right fight, as you will lose! I learned this caring for my late father!
It could be delirium from medications or infection. This article I wrote explains the difference.
Do not fear about having a 'pity party'. You are simply telling your story and this is vital, cathartic and important for you.
All the best.

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Reply by Xenia

29 May 2014, 5:47 PM

Hi Mary:

Welcome to the group. We all share your feelings having gone through the same or as I am going through John's wish to die at home. One of the persons on this group mentioned that he was his wifes/significant other companion in life and he now was her companion in death. This explained a lot to me. My husband and I have been married 58 years and been companions through thick and thin, good times and bad times. Now I companion him through his illness.

John has COPD, lung cancer, Congestive heart failure and is a diabetic. I was diswrought when the doctor's told us he had 6 months to live. I went to this discussion group and asked questions from those on board, went to the professional group and asked and read and this helped me understand that giving a time limit to a patient like John is hard as he rallies, looks good, seems to be his oldself then next day he is down.

On the ask a professional I was directed to a Hospice person in my home town and she asked me how long I was nursing John, oh since October...she asked me to think again, I have been nursing John for over 2 years, in and out of the hospital, relapse and regained health. She had me understanding I was grieving for a long time and as the doctors needed to have a plan laid out so he could receive palliative care at home, there are points needed to get this, they gave John the expected 6 months with all his ailments.

I just printed down the article on Grief Work by Fred Nelson, what a good article, telling me so much and with compassion. If you have time do go to that article and read it. It has helped me so much. I too have nurses who come to the home and our doctor visits when he can. He has been a great help and has so much admiration for the community care nurses who see the patients in their homes and are on the front lines of suffering and offering help.

John is taking more morphine now as he is having a harder time breathing and the Hospice doctor has informed the nurses that this is being used to help patients with their breathing. John never wanted medication but now he is asking for it and I know he is very much in pain as he is so stoicic that even the nurses and drs. wonder how he can bear the pain. I have seen this with him from the day we married.

I want to extend a hand to you and let you know this is the best place to go when you feel overwhelmed, there is always someone who offers care, compassion and understanding just when you think this is the end, I give up. Turn to your friends here who have their hand out with help.

Regards

Xenia

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Reply by moderator | modératrice

30 May 2014, 6:51 PM

Xenia, you mentioned several great resources in your message above. Thank you. I'm glad you found them helpful.

Mary, here are the links that Xenia mentioned.

Grief Work by Fred Nelson

There are articles on many common topics written by the Virtual Hospice team of experts in the Topics section that you may wish to explore.

As Xenia mentioned, as a member of Virtual Hospice, you have access to our team experts through Ask a Professional. You can use your same email and password to login and ask a question privately and confidentially. You'll get a response within 3 business days.

Of course, in the meantime, you can always share with us on the forums.
Take care Mary.
Colleen

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Reply by Mary M.

03 Jun 2014, 12:19 AM

Thank you all- Xenia for the suggestions and support. Thanks for sharing some of your journey. Colleen, thanks for the links- I will certainly go and read the material. Thanks all of you for being there, you don't know how badly I needed this right now.

JennJilks-
I have not responded to any posts on here because I read your post. Don't get me wrong, I was not mad or anything, it was the thought I needed to put in. The points you make on a good death at home are not being met. I have thought long and hard.

1. We are dealing with the physical fairly well. His breathing and fatigue are ok. He does have bedsores and I dress them- they are good one day and bad the next. There seems to be no rhyme or reason to it. I am having a hard time getting him to try and change positions to help them. He is very very thin and this does not help. It is like tissue paper over a rock. His skin is so thin right over bone. But we are dealing with it.

2. He has accepted death, but I know he is not at peace with it. I think he gets scared sometimes. I want him to talk to a counsellor, but he does not want more people to come to the house. He is not religious and has never shown a "spiritual" side.

3. He has refused to let me tell his brothers and sister how sick he is. He was always the one who called them, they would say they would keep in touch, but never did. He hasn't spoken to them in over a year. He told me he was not going to keep calling them when it was apparent that they didn't care to make any effort. He does have a stepdaughter that he has kept in touch with, but he now says it is too much for him when she visits. She has a LOT of drama in her life and I cannot get her to leave it at the door.

4. I am finding it hard to meet his emotional needs. I try so very hard, but he cannot remember things. This is not his fault, but it is hurtful when he has forgotten something and chooses to believe it was kept from him. He knows he has these lapses, but I feel that sometimes he would rather believe that the doctor, nurses and I are all in a conspiracy.
I have Psoriatic Arthritis as well as osteo arthritis. There is very little difference between PA and rhumatoid arthritis. It is crippling. The stress has made a huge difference in the level of pain I have- the flare ups. I work through the pain and do for him and I cannot tell you how I feel when he thinks I would EVER do anything to hurt him. It shatters me.

I don't know if I am doing the right thing. I don't know if I am giving him a good death at home. Your post makes me think I am not. I promised him I would keep him at home. This is what he wants, what he STILL wants and I am so afraid I am doing something wrong. I am afraid I have done this all for him and I did not do the right thing by him. I read what you wrote anfd I was just devestated to think I have failed. I have tried so very hard. I really have.   I love him so much.
Mary

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Reply by marstin

03 Jun 2014, 2:43 AM

Hi Mary,

You are doing what you feel in your heart is the right thing to do. We all have to make those choices. There is no right or wrong and I don't think JennJilks meant to offend you but unfortunately it did. This is a promise that you made to him and want to honor. Having taken care of Len at home, I hear you when you talk about the 'skin being paper thin over rock'. Len used to ask me to massage his back and as difficult as it was to do, I did it. Very few people saw him when he was at that point other than our daughters and his brothers who came to see him the day before he passed away. It is a difficult thing to deal with but we do it to follow their wishes.

My stepdaughter was a mess with drug issues etc. when her dad became ill and I felt the need to protect him from anything that would upset him. They become like our own children and we do all that we can to keep them safe and comfortable. The thinking becomes a little unclear as time goes on and I remember Len who was always kind and gentle starting to swear at me. When he did it to our daughters, I reprimanded him as if he was a child and he accepted that he had messed up. It's not something that you have done, it's probably the medication that is causing him to be angry and distrustful. Medication does alter the mind.

It's too bad that he won't allow you to contact his family. As selfish as they've been by not staying in contact with him, I would guess that they would be devastated to know how ill he was and that they had no idea about it. That's a tough position for you to be put in.

Mary, please take care of yourself. I know how beaten down I became and how I really didn't care. I'm still after 2 years trying to build myself back up to health.

Here's a big hug from me to you,
Tracie

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Reply by KathCull_admin

03 Jun 2014, 3:58 AM

Hi Mary,
I echo Tracies' words - you are doing what you feel in your heart is the right thing to do. As I read your words, it is clear to me that your intention is only to support and help your husband be as comfortable as he can be. Hard though it is for you - you are working to keep your promise to him. I hope you can take some comfort in that.

My experience is that guilt makes itself at home in me no matter what choices I make - it makes me second guess myself - and it is never objective!

Were you able to see or talk to anyone at Bethell Hospice?

Thinking of you across the miles Mary
Katherine

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