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Reply by JennJilks

16 Nov 2014, 6:13 PM

Katherine is right, 'Tuna'. do find a local hospice volunteer group. 211Ontario, for Ontario, for example. Canadian Hospice
They will be able to support YOU, and give you information. They will give you respite. Even having a volunteer to sit with your hubby while you have a nap, or something would be helpful, wouldn't it?

Emotions are just what they are. They aren't right of wrong. They just are. You are frustrated, guilty, angry, upset. I can understand how your mother-in-law would be angry. It is displaced, however. She should be helping, not hindering. It is difficult for a mother to watch an adult child die, as well as a youngster.

It's what one does with those emotions that seperates out a person from a humane human being. You should be supported by in-laws. I wonder if they think you are influencing your husband who, wisely (I think) has refused further treatment. I found, in both my late mother and father's cases that further interventions made their quality of life much worse. The 1st chemo treatment killed my mother 2 weeks later. Her body just couldn't take it. He oncologist didn't understand, she probably didn't tell him, about her dietary issues, her general poor health. She made dad have radiation. This gave him delirium. It was awful. Dad missed her funeral as he was in the ER.

This may sound dumb, but I found writing out my father obituary helped me, while he was clearly dying. Some people can have wonderful talks with dying family members: I would suggest a life review, if you feel up to it and hub agrees. It really helps to focus on the good parts of one's life, rather than this part of life, as dying is part of the whole deal.
My late friend, died at age 95, said: "I learned so much about myself while being in long-term care. This is only one part of my life, not the whole of it."

Also, I found helpful the PPS, or ESAS, or other measures of palliative pain. Having an idea of timelines is really helpful for people, like yourself, who are being stressed with it all. I found it helpful as I was getting more and more upset seeing my parents who kept wondering when things would get better. None of us knew enough to tell when end-of-life was near.

Let me know if you need anything else. You are doing a wonderful job. No one else could do what you are doing for your husband. Not your MIL, or any other family members. Know this, for sure!

Jennifer

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Reply by NatR

16 Nov 2014, 6:25 PM

Dear Tuna

welcome to the forum ;( although the reason you are here is horrendous - the forum manages to turn your experience around to the other side - where the caregiver becomes the focus ~ and thd person who supports the patient

in so many ways caregivers are consumed by caregiving to the exclusion of caring for themselves
IT is exhausting to caregibe and walk the walk through day after day, week after week etc

here you are free to say your thoughts without judgement. Here you find listeners who understand and will support you as often as you need them

there are just some things you can't share with your community, your family, coworkers and even the very person you love and support . No matter who that is - parent, child, spouse or friend

we are here for you
i am a retired caregiver who has worked in long term care and also with a special needs family member
I learn so much from the posts and this community - I hope you will too

please continue to share your thoughts and we will walk along with you

sincerely,
NatR

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Reply by Xenia

16 Nov 2014, 6:31 PM

Good Morning Tuna:

I just read your message and am so sorry to hear of your husband's cancer and your dealing with all the problems which you don;t need at this time. You are one brave lady and know that you will find support on this message board as many of us have been through or going through the same or similar problem you are as caregivers.

I understand your husband saying he wants it over with as my husband has lung cancer and many other medical problems and he too wants it over with. I often pray at night, I am not overly religious, but I pray if you want to go John, go as I know it is hard on you. He has accepted his demise as he has been ill for a long time and is very tired. The hardest part with long lingering illness is that one day they can look so good you wonder if the diagnosis was wrong then a day or so later you look at their face and say "He looks so good" what is going on, then it flips to the illness again and sometimes worse.

I am sorry to hear your mother in law is being so mean to you. It is hard to hear the hurtful words and sometimes one must just look at the source and turn your back on them and let them go. I am glad to hear your daughter is working on her soberity. She must be suffering as well and of course her soberity is most important. We have a son who has had problems with soberity with self help drugs as he is bi polar and until we realized that he was self medicating we were unable to understand his need for some drugs that helped him get through some really tough times. He has been sober for 5 years and is such a great man that we wondered where he was at his worst times, where was that person that was a great child, youngster, teenager then in his 20;s became a druggie, that is when most schizophrnia and bi polar is diagnosed. He went to a group home and became sober so there is great hope for your daughter and I am sure she will stay clean at this time.

Please keep in contact with this group and do read all the other message boards as they have so much good and caring information. I had to learn this when I first turned to the message boards and I also contacted the professionals and was given so much help that is made my journey living with a partner who was given little time to live and somehow seemed to defy the time limit. It is all a learning process and takes time so don;t guilt yourself.

Take care

Xenia

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Reply by Nouce

16 Nov 2014, 6:42 PM

Dear Tuna,

My heart goes out to you! I could go on and on about my own story in the "guilt factory" which is sometimes what I call caregiving.

When a person like yourr husband makes a brave and wise choice, you can expect all kind of reactions. When my husband finally agreed he had to go places in a wheel chair, I took him to a concert, and one of his friends greeted him, "So you've gotten lazy, needing your wife to push you around!" Trust his wisdom and your own.

And as a (better) friend told me, "Wanting it to be over is different from wanting a loved one to die." You are doing a great job. Be good to yourself.

Nouce

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Reply by tuna

17 Nov 2014, 12:53 AM

Tracie,
Thank you for your reply. You have been through so much, yet you continue to help others!
The day you sent your reply, I was at the local Mental Services hospital. My daughter who is an addict had relapsed yet again into alcohol and drug abuse.

I wil keep it together. I will get through all of this.

In order to care for my husband at home, I had to quit my job. The cancer has metastasized to his brain it seems, and he can't be left alone.

Its been a tough week.

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Reply by tuna

17 Nov 2014, 1:01 AM

Hi Katherine,
Thank you for your reply.
Hospice referred me to the Hospice Unit for counselling. I have an appointment next week. My husband has refused all counselling . But. he does listen sometimes to me. So I research and share with him what I think he would find helpful at the moment.

AS for my MIL- She has never been warm towards me, yet she has never yelled at me and called me names before either. She said she has had this feelings toward me for a long time, and she finally had to say it. It seems the feelings are not new, but the venting towards me is. Perhaps it is her way to grieve.

I did look at the link. Very informative information, some of which spoke directly to my heart.

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Reply by tuna

17 Nov 2014, 1:08 AM

Hi BevB,
I am truly sorry for your loss, and I hope that the passage of time has brought some comfort.
Its true, we just long for the pain that love ones experience to pass. To see ones mate in physical and emotional distress is so so difficult. Difficult doesn't even really describe the feeling well either.
Today, I am just at a loss for words. But I wanted you to know that I appreciate the time you took to respond to my post.
Thank you

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Reply by tuna

17 Nov 2014, 1:24 AM

Hi Jennifer,
Thank you for your reply, and I truly am sorry for your loss.
Thank you for your expression of confidence!

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Reply by tuna

17 Nov 2014, 1:28 AM

Dear NatR,
Thank you for every word you wrote. You understand, you truly understand. There are so many things that I cannot say or express to my husband or my family. I so fear being judged. I want to get through this with my sense of being still intact, and still be a source of strength and support for others.

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Reply by tuna

17 Nov 2014, 1:40 AM

Dear Xenia,

So much of what you wrote resonated with me. One day my husband does look good, and I wonder if the diagnosis was wrong. Then yesterday he was so sleepy, kept falling asleep during conversations. The same thing this morning. Now this evening he is alert and bright. Its like being on a torturous rollercoaster. The Dr's gave him 3 months to live, 3 months ago. He is a fighter, and is fighting this every day.
My daughter has an appt with a mental health Dr in three weeks. Wish the appt was tomorrow, but you take what yoou can get. The Dr she saw in the hospital this week thinks she has bi polar disease. But, my daughter checked herself out before this could be investigated furhter. I too feel she is self medicating underlying mental health issues. She has been an addict for at least 10 years. This weeks crash and burn for her has just added to the pain.

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