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Reply by grammakim04

10 Apr 2014, 4:15 PM

Thank you Mark & Xenia for your postings, it really helps. Unfortunately my husband doesn't want any of the support workers in the house, he only wants me to care for him. We did try the support workers for a month where they would come in for 2 hrs a day for 3 x's/week but it was a different person each time. It confused him so much and made him so uncomfortable.

He kept asking for ladies how much longer it would be until I was home. He become so upset while I was away. Several times after I arrived home, he was just in tears. He told me he just couldn't handle it no longer. It just wasn't worth it to me to have the time away to have him this upset.

A couple of months ago we did tour a hospice in Calgary..Agape Hospice. He did like this one as it was operated by the Salvation Army..faith based. UNfortunately, there is no guarantee he would be allowed to go there. The way the system works here, I have to select three and where there is room, that is where he will go. Really doesn't seem fair. I asked if he could go on a waiting list for Agape but apparently not, it doesn't work that way.

If I knew he could go to Agape Hospice I would feel easier with my decision but with the way the system is set up I am just wrestling with it.

I'm going to talk with my Pastor tomorrow morning, he is also a very good friend of ours.

I want whatever time I have left with my husband to be special, not filled with exhausting, stress or any anger.

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Reply by grammakim04

10 Apr 2014, 4:23 PM

Thank you Tracy, your posting meant so much because of your situation. My husband is my priority and will continue to be. It tears me up that I'm losing the two most important men in my life.

My mom phoned me last week and told me that my dad has lapsed into another stage of alzheimers and no longer recognizes anyone in the family. When I got off the phone, I went into my bedroom and cried for about a hour. I have always been very close to my dad...to know when I am able to see him, he will not even know who I am just saddens me. My mom's comment was that was I choice I made by not coming to see him before this happened. wow

No regrets, my husband is my priority, he needs me, but it hurts so much.

Thank you for your encouraging words

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Reply by marstin

10 Apr 2014, 8:15 PM

Hi Kim,

How cruel of your family to try to make you feel so bad. They truly do not know what you are going through or they wouldn't judge you. My Mom and I were together daily, so when I had to make that choice, it was really painful but I knew it was the right one. Your Dad is being well taken care of and your husband needs you to be there. Maybe when you do get to see your Dad that he will remember you but even if he doesn't, you know that he would expect you to do just what you are doing. Guilt serves no purpose except to tear at a person's heart. My brother jumped in and spent many hours with my Mom when she was in the hospital and all I could think of was the lost years that he could have been with her but chose not to. His silly wife invited company to their house while all of this was going on and expected him to entertain so he lost the last two weeks that my Mom was alive. You at least have had a close bond with your Dad and will be able to forever hold that in your heart.

Here in BC we have the same issue with Hospice care. We had only one option for my Mom and it was too far away for me. Instead they kept her in the hospital in Comfort Care as even the Palliative Care unit was too full. It wasn't ideal but she was well looked after. I truly hope that you will be able to get a spot in the place that you want. I wonder what would happen if you phoned the place yourself? I would guess that it wouldn't hurt to try.

Hugs,
Tracie

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Reply by Xenia

11 Apr 2014, 6:15 AM

Hi Kim and all:

It is late, 11:00 p.m. Can't sleep. John was sitting and I noticed something different and asked him what was wrong. Nothing, something. I helped him to bed and see him sleeping and wondering what is in store.

The doctor called as we keep in touch every two weeks or as needed and he ordered more pills etc and told me it was the lung cancer he was worried about when I told him about John;s diabetes. Strange that I would ask about that, being concientious (if that is how you spell it). Always trying to do the right thing. Oh well, dr. is pleased with what I am doing and so did the nurses that came over on Friday. John is so , don;t know the word, not worried about dying as he had a near death experience about 25 years ago when he had the angio plasty and had a massive heart attack. Since then he is s non plussed about dying. He says he just wants to go to sleep. He doesn;t talk about it all the time but I know he is thinking a lot. So I go along with it and care for him.

Kim, You say you have a pastor, perhaps he can speak to your husband about your need to have a time out. Also, about the hospice care for him. I do not know if you saw there is a minister/pastor on this web site who offers much to us who are faced with the passing of our loved ones. You might want to go to and see if it can offer you some good advice.

Tomorrow I have to go out to have some rehab work done on sicatic problem and I worry about John since he is not doing so well today but it has to be done as I need to get this problem fixed as it is causing me some discomfort. Our son will be here first as the caregiver is scheduled for 10 and my appointment is for 8:30 and will last an hour. John is okay with that told me to get it fixed...had to laugh as he is one who does not want to take his medication and is so stoic but finally gives in and he is telling me to get it fixed.

I had a bit of a cry to-day, Jim Flaherty's passing made me sad. So young and just leaving his position 3 weeks ago. I realized how fortunate I have been, married 58 years and husband is 85 and we have had a good life.

Thanks for letting me share my worries with you and knowing we share the same worries, etc and that we can find comfort on this web site.

Xenia

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Reply by KathCull_admin

11 Apr 2014, 2:19 PM

Good morning
This Ask a Professional is a direct link to the pastoral care resources on the Virtual Hospice site Xenia is mentioning Kim. I am glad you have found them helpful Xenia.
Katherine

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