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I'm so exhausted. 
Started by grammakim04
09 Apr 2014, 5:31 AM

May 2012, my husband recd a diagnosis that he would be lucky if he survived 3 months.  Both arteries in his neck are completely blocked and inoperable due to density and location.  Since then, he has had 7 strokes and daily mini strokes.  I could go on with the deteriation of functions that has occurred due to the strokes.  I have kept him at home and cared for him thru all of this. 

The last month he has just gone down him.  He just sleeps all the time now.  His bp and pulse rate is so irratic now and times his pulse rate sits at 40 ppm.
I basically care for him myself.  We have been with the homecare program in our town and yesterday our nurse brought up with him the possibility of going to a hospice.

He became so upset, stated he is going to stay home to the end.  His nurse tried reasoning with him on how exhausted I am and how little of a support circle I have.  Our kids are grown and live in another province.  They phone often, but I'm on my own and I have my own medical issues and just so worn out.

Chuck is coming to the end of his life and I am getting nervous on how I'm going to handle his passing at home.  I've tried to talk to him about it but everytime I bring it up, he becomes quite upset with me.

I would appreciate any input if anyone has dealt with this type of situation.

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Reply by KathCull_admin
09 Apr 2014, 1:59 PM

Dear Kim
Welcome to our community. My heart goes out to you. Both of you have had a lot to deal with.  I would imagine you have been doing much of the day to day work, meals, appointments, household as well as supporting him physically and emotionally. It must have been so hard to have lived with that news for 2 years. One resource that many people have found helpful Kim is 
When Death is near written by Dr. Harlos a Palliative Care Physician. 

  Xenia, another member started the thread 
how to deal with an ongoing illness and drs. telling you husband has 6 month to live.  If you go to that thread and post other members of the community on that thread will be sure to respond to you.

I am wondering how you are doing. Are able to continue giving the physical and emotional care your husband needs at home? Are there friends and others who can support you and Chuck?


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Reply by Xenia
09 Apr 2014, 3:36 PM

Dear GrammaKim:

I appreciate your dilema with your husband and his illness.  As a caregiver, wife and support of my husband who faces end of life my heart goes out to you and understanding of the ups and downs of caring for a loved one.

I am fortunate to have a good family doctor who is supportive of us and family who live a few hours away.  I know how difficult it is to deal with a husband whose health problems vasilate so much.  One day up and then down.  I turned to the community care nurses for information and to the professionals on this website.  The information and help I received has helped me a lot.  One professional suggested I get in touch with the Hospice society in my city.  When I followed this advice and spoke to one of the persons there I was made aware of a lot of things that I had just put aside such as I had been caring for my husband for many years not just the past six months when he was put into palliative care.  Somehow the past years just slipped away and as wives do we just carry on and keep on going without realizing that we too are under stress, have health problems and have children who are supportive but have their own lives to live and families to care for.

I too was concerned about how to handle John's passing at home but have support in that John has agreed that if I and family are unable to care for him in the final days of his life he is to go to hospice where he will be cared for in the same way he is being cared for at home.  Our doctor has filled out all the papers for this and we have his DNR filled out which helped myself and family to understand that we have many choices.

I allow myself to get angry and frustrated.  I have always been the strong one but the doctor told me it is time to stop trying to be the strong one.  I need to care for myself otherwise I cannot care for John.  With that advice I have respite time twice a week.  Have you asked for respite care, if not contact your community care and ask for help.  At first I felt guilty about going out and didn;t know what to do for four hours, I was like a ship without an anchor as I had put all my energy into caring for John and got lost in the mix.  Now I visit a friend, (I do not drive so our son drives me) in a nearby town about 20 minutes away.  I go to Walmart and walk around for a bit, I do not like shopping, go to the park and watch the birds.  I belong to the Legion Women;s auxiliary so I attend a meeting once a month and do baking for the sales, anything to keep my mind active and not always on John and his illness.

I seem to be writing a story,GrammaKim, so I will sign off for now with kind thoughts to you and your husband.  One of the people on another link said he companioned his wife to her passing and I thought what a wonderful word, we have been companions with our husbands for many years and as such we companion them to the final stages of their lives, caring all the time and wondering how we will do without them in our lives.  I do not dwell on that too much as every day is precious and when the time comes I am sure we will find the skills do carry on just as we do now with our husbands at this most difficult time.

Hugs and Wishes to you

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Reply by Xenia
09 Apr 2014, 4:03 PM

Dear GrammaKim:

I just thought of another link that is so helpful  It is called: When to start the conversation about"end of lie, wishes and plans.  If you have time please go into this link and I am sure you will find much compassion from Dale.

Dale also known as Digger has such wonderful insight that has helped me so very much;

Take care

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Reply by KathCull_admin
09 Apr 2014, 5:05 PM

Hi GrammaKim and Xenia
Here is the link to the thread Xenia mentioned When to start the conversation about 'end of life' wishes/planning

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Reply by Aphasia Sufferer's daughter
10 Apr 2014, 1:15 PM

No one is addressing the issue head on here. Your husband does not want to go. That is reasonable. If you could try talking to him about when specifically it would be okay to call an ambulance...ie when you are unconscious, when you havent eaten in three days..when your pain cant be managed at home, when you no longer know where you are.
What assurances can you give him that he wont be abandoned? Is he afraid of being alone there all day long? My mother had no company  in the evenings...no one brought her tea or a snack as she had had all her life...even tho they were instructed and paid to do so... She lost the emotional comfort she took from her surroundings and things and view out her window. 
Are you sure that he has to go? Could you leave instead? Go to a friends house overnight for one night a week with a night shift nurse at home? 
Are you sure your kid couldnt come one weekend a month or two? Why is sacrifice for a parent not okay? 

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Reply by grammakim04
10 Apr 2014, 4:33 PM

I've never abandoned by husband and that is what i'm struggling with right now..if he goes to a hospice, have I failed him.

My children are married with children and have their own jobs.  They live in another province, it's not easy for them to come and stay for a month or two.  We have tried bringing support workers into the home, but it has upset him too much.  They were coming in 2 hrs/day for 3x\week.  Problem was it was a different person each time and it confused him.  At times, when I arrived home, he was in tears.  It just wasn't worth it to me to see him this upset.

I've been caring for him at home for close to 2 yrs now...I'm burnt out, exhausted.  His health condition is deterioting and I'm afraid I may not be able to care for him at home much longer because I am so tired.

I can't leave him to stay at a friend's place or elsewhere, all I would do is worry about him.

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Reply by KathCull_admin
10 Apr 2014, 4:52 PM

Coming to the end of life is hard. It seems that no one answer fits all circumstances. In relationships there is usually give and take and decisions are made mutually, but illness complicates things. Often the caregiver is forced to make tough choices - alone - ones they never would have wished to make. One of those really tough ones can be whether or not their family member is able to die at home. Being at home means you provide care, cook, clean, support your husband emotionally and spiritually + you are his wife. I can understand how tired you are.  I am glad you have the support of the home care team/nurse Grammakim - that will help as you make decisions. 

In thinking about making decisions and looking back on them, an article I found helpful is How Do You Know You've Done the Right Thing?

Aphasia Sufferer’s Daughter to know that you had arranged for people to spend time with your mother – and they didn’t – that must be really tough. I am sorry that happened to her and you.

I got this quote from Mister Rogers.  “Some days, doing "the best we can" may still fall short of what we would like to be able to do, but life isn't perfect on any front-and doing what we can with what we have is the most we should expect of ourselves or anyone else.”


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Reply by KathCull_admin
10 Apr 2014, 4:56 PM

Hi Grammakim
We were writing at the same time! I am concerned about you - maybe think about what you need now - because in the long run this will benefit your husband as well.
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Reply by Aphasia Sufferer's daughter
10 Apr 2014, 5:50 PM

If your husband's doc and your doc think it is time for him to go to a hospice, then you are not abandoning him. But remember that there will be more not fewer workers there. And he will be extraconfused for a while when he goes. It gave my dad the energy to recover from his pneumonia when we moved my mum to a seniors residence. He is 90 and is totally self sufficient...he needed the rest to be able to handle his grief   buying a new car, settle her estate and establush a new routine...he cared for my mom with alzheimers from 2003 to 2014...2006 to 2014 were the toughest.

My mother was also confused by the multiple workers CCA kept sending. And my father found that the time he had to spend over and over showing new wirkers where stuff was and keeping the lazier ones working added to his burden. So we ended up hiring a psw privately for three days a week (one was a weekend day) and letting CCA provide the same two workers on two other days. The psw's cut into my parents'savings but it was only for four months and my mom was more settled. Still I spent Tues from 10 am to Wed 2pm, Fri 10 am to Sun 2 am with my mom and worked full time and i live 1.5 hours from Toronto and my work is 2.5 hours from TO. My dad was there every evening starting at supper time(after we figured out that my mom was suffering from loneliness) and my sister was there usuall y for 3 to 4 hours on a Sunday. Exhausting for me most of all as my dad and sister live in TO. My work suffered. I had to ask to he released from the final month of one course...i wasnt helped at all with that and i got no work from the college this winter. I could not live with preferring my work to my mom and accepted the consequences for me.
BUT once you get the palluative care coordinator i n and the doc declares your husband palliative, then the CCA has to take into consideration the disruptive harm that comes from changing psw's randomly. Have you had the palliative care coordinator visit
It does seem doesnt it that the time when our loved one needs the most care is at the end when too many  of us are exhausted. 
My point about abandonement was a point about what our sick loved one may fear...not about what we are actually doing.
Not every person is afraid of that. My friend's dad wanted his wife to sit in his room by his bed 24/7 ..he wanted her there and awake! And ready to serve him! Eventually they both had to go to a nursing home and my friend had to ensure for her mother's sake that her room was no less than three rooms away because he would just call for her if he thought she could hear! 
Do what is right for you both. 
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