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Reply by womynstar8

30 Mar 2014, 11:49 PM

Dear Dale and Xenia,

Are you aware that you have a legal right to keep your loved one at home until they are buried or cremation? That is, not only wash and dress their body; but then keep them at home for 2-5 days while everyone says 'goodbye' (in whatever way the family wants), and then drive them to the cemetery or crematorium yourself (requires a 'private transport permit'). There is more information on this at the CINDEA website www.cindea.ca

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Reply by Digger

31 Mar 2014, 2:59 PM

Xenia,

Your post triggers memories for those who have or are making this journey with a loved one. It occurred me that I too was dying as I companioned my former partner to her death. The only difference was that my death was a metaphorical one, hers was physical and real.

I felt selfish at times and wanted to cry with her, but soon realized that this was not about me, not yet. It was I who had to provide the comfort and the quiet space to pass. So I had to have a support system for myself - these were a close friend and a counselor at Hospice. I also arranged for daily respite so i could get out to walk, ride my bike, go to yoga.

Self-care for the caregiver is very, very important. It will help you be present in the moments when he needs you the most, and those days will come. Now is the time to put the things in place that will sustain you later. Don't let any denial on his part dissuade you.

Your posts about the journey are good to read.

Dale

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Reply by Xenia

01 Apr 2014, 4:21 PM

Good Morning Dale and All:

You mentioned dying with your companion. How true, and how we forget until reminded. When I spoke to the hospice person she stated I had been caring for my husband a long time. No, just since October 2013 I replied, then it hit me, yes, after she said you were there as his caregiver when he needed help prior to this episode.

Yes, and yes, again, John has been ill for a long time, each time drs. told me to prepare and were we prepared for his passing. At that time it did not seem as serious as this past October where he was put on palliative care. How our minds keep us from all the sad and hard things that happen in our lives. I forgot the times I took him to hospital by ambulance, the hours sitting by his bed, making his meals so he would have some nourishment in hospital, bathing him in hospital, changing his bed, etc, no I forgot all that until this last episode and he is at home with me daily, giving him his meds, his needles, etc.

I do love the words you use: Companied , yes, that is what we are and companion has so many meanings: An associate, a comrade, a mate, one of a pair of matched objects. This is us we are companions all the way.

Take care. Waiting for our son and daughter coming over for an hour or so to spend with dad.

Xenia

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Reply by Xenia

02 Apr 2014, 4:25 PM

Good Morning:

Here I am again. Feeling a loss, my doctor's nurse called yesterday afternoon to tell me that my doctor (I go to a different doctor as my husband) had closed his office effective Thursday, to-morrow as he had a stroke. I felt overwhelmed as he was so supportive of me and almost a friend when needed. Gave me good advice and we had a lot of laughs, besides he is younger than I.

I was so stunned that I felt I was selfish when I didn;t enquire as to how he was doing, no who will look after me...do I still keep my cardio dr. appointment. Yes, Yes, and then I had the evening to think it over. Was going to phone and apologize, however, the nurse called and was so supportive and told me she was going to see if her doctor would take me as a patient. One never knows where the help will come from.

Husband very tired to-day, have my respite and I will be doing a bit of shopping, etc.
Feel better now and trust you are well.

Xenia

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Reply by Digger

09 Apr 2014, 3:37 PM

Xenia,

Dying is a journey for the one dying and the care giver. They overlap in places and are very different in others. The physical world we once shared together gets smaller and is eventually restricted to a bed in a room, and then disappears altogether. Inner worlds open up but this seems to depend on how much inner exploring the person has done in life, at least this is what i am seeing.

In the mean time, we carry on, just as you are doing. Support flows in from unexpected sources when you are open and look after yourself. Not selfish at all but part of the self-care that is so important. He is the real beneficiary of this.

When I die, I would want my care-giver to take care of themselves, to be balanced and able to bring that rare quality of 'presence' to my bedside.

But I'm selfish, we all are.

Dale

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Reply by grammakim04

09 Apr 2014, 10:22 PM

I've been sitting here reading your posts and feeling very overwhelmed. I've been caring for my husband for almost 2 years now. I do feel each day has been a treasure as his medical team felt he would be lucky if he survived 3 months and he's made it alot longer.

But to be honest, it's been really hard..on both of us. My husband is 68 yrs old and prior to be sick was a very active person. He loved hiking, biking, we loved traveling in our RV, we lived a very active life. In one day that all changed when he had a major stroke in May 2012.

I made the decision to care for him at home with the assistance of our local HomeCare team. There is so much the team provides, the rest is left up to me. Unfortunately our children live out of province with their own families, but they phone often and my family is very angry with me. During this time, my dad developed alzheimers and was placed in a nursing home 4 months ago. As my parents live in another province, I could not be there to assist them..I was truly torn apart by this and my brother & sister constantly berate me that I am a terrible daughter. I phone my mom often but it's all I can do.

In the last month, my husband's conditon has rapidly changed. His homecare nurse has suggested it maybe time to consider a hospice. He is concered about how exhausted I am. I have my own medical challenges with fibromyalgia and arthritis.

I've been really wrestling with this right now, if I agree to send him to a hospice...have I failed. With being so exhausted, can I handle him dying at home.

Just struggling so much right now.

Kim

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Reply by Mark99

10 Apr 2014, 2:22 AM

Kim

In a word NO you will not have failed with the hospice decision. When Donna went into the hospital to have some fluid removed from her lung cavity wwhich was not successful she began her decline. Of course she had been declining for 2 1/2 year with her cancer. I was her caregiver and she was active but it was hard to manage her disease and appointments and emotions. I would sit on the stoop when I came home just out of fear what I would find.

Once she went into hospice and to be honest they were going to send her home with me but took one look and recognized perhaps it would be best for her to remain in patient hospice. What I found with the hospice experience was my ability to focus on Donna and not her care. I could be to her what we were always meant to be and not a part time husband but putting her first. Did I make or was the right decision made for me I think so yet I would love to do it over.

Finally, your brother and sister do not comprehend caregiving. Let your heart guide you not your will or some emotional calculus. Give yourself a chance to say to him what you feel and not be burdened with caregiving. I found that I was on some level using caregiving as a proxy for love yet I was able to love more fully while in hospice.

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Reply by Xenia

10 Apr 2014, 3:13 PM

Good Morning Kim:

I am on the West Coast of Canada and have been up early reading the messages on this link.

No you are not failing your husband in any way should he have to go to hospice care. The message from Mark says it all. When the time comes I do believe your husband will welcome the change from home to hospice as you will be able to be with him and not busy doing all the things that caring for him at home involves. It will also give you time to be with him.

Regarding your brothers and sisters: Don;t let them put any guilt on you. You have enough on your plate without having some adding to it. If possible disregard them and I know it is difficult as like you said you live in a different province and it is hard to communicate to those who are with your father that you just don;t get up and go. I lived in a town that took 8 hours to drive to and I know how it hurts to be seperated from family.

You are doing a good job and deserve more credit from your brother and sister. I am sure your nurse tells you the same. Please get in touch with your health support persons and see what they can offer to you in this time of need.

Xenia

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Reply by moderator | modératrice

10 Apr 2014, 3:56 PM

Xenia and Kim,

I thought I would share with you other threads where people talk about hospice, what to expect and their experience there.

hospice started-what do I expect?

When is it time for Hospice?

Colleen

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Reply by marstin

10 Apr 2014, 3:56 PM

Hi Kim,

I echo the thoughts of the others when it comes to how your family members are trying to load guilt on you. They don't have an inkling as to how much you are already dealing with. When my partner was dying, my Mom started having major health issues. Since family members were so used me to taking care of her, they at no time stepped up to help with the load even though they lived locally and knew that I was caring for Len at home. The guilt I felt when I just couldn't continue to care for both of them was huge. I was exhausted and had to make Len my priority although I never deserted my Mom entirely. Consequently, Len passed away and my Mom went into hospital the day after and passed away just over 7 weeks after. After nearly a year and a half I still feel anger that the ones that may have saved her felt it was my job to do. You CAN'T do double duty nor should you allow their judgment of you to make you feel bad. You are doing the best you can under the circumstances.

Making a choice to put your husband in Hospice care does not mean that you have let him down. You have given it your all but you also need to take care of yourself. I remember making the decision also that if it got to be too much, that I would place Len back in Hospice care. He passed away right around the time I was considering it but I would have taken that step if necessary. By putting him in Hospice you will be able to spend more quality time with him and with less stress to you. You matter too, please remember that.

Hugs,
Tracie

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