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11 years 3 months ago #22893 by Stephany
That must be so frustrating, Julie. You stand there, and look at what you have to do, and have no idea how you are going to accomplish it. Or you wonder if just this time, it might go differently. Or you wish you had anticipated this one time, and that you had planned differently.

And I know it isn't all just sitting by his side, holding his hand. It's mostly fixing, putting away, taking out, cleaning up, keeping count, watching over, and making do, without knowing at all how long you will be doing this, or when it will change.

you know, I used to shy away from this forum, because I couldn't understand what people were talking about, or how they could talk about these things. Now, that I know more about it, I stand in awe of people like you, who keep getting up in the morning (or in the middle of the night), and keep on taking care.

I can't make it better, I can only cheer you on right now. So, GO JULIE!.

My mom was put on a ventilator, because she had two pulmonary embolisms and two DVTs and she wasn't getting enough oxygen to her brain. They medicated her, and tubed her. I talked to Dad this morning, and she was better, and they think she'll be off the oxygen tube tonight. They're just hoping to get the blood clots dissolved. She probably got them in traveling on the flight to Arizona, but she really wanted to be there. I told Dad to be secure in knowing he did just what she wanted, and that he couldn't have done anything different.

I am still planning on going down next week. I even have my Ativan ready.

Spent yesterday and today talking finances with the attorney and accountant, and trying to get paperwork straightened out. I want to stop and wrap presents, for when we get back, but don't have the time yet. We had our office Christmas party today, and I ate all kinds of stuff that I wouldn't touch unless I had to eat it to seem grateful, and my stomach was rebelling all evening. Had some leftover California rolls, and that seemed to help. Now, for a glass of wine. That will really help.

Tip of the glass to you, Julie. I'm glad you got the booklet, and hope it helps. I still cry when I look in it. Today, one of Doran's friends called to say he was still mad at Doran for dying and not being at Rotary to eat lunch with him. We had a couple of good laughs over that, and it didn't hurt too much. But I found myself wishing I could tell him about it!

Stephany in Iowa

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11 years 3 months ago #22889 by Julie
Stephany, I think what I mean by "doing it all" is that most of the time I am alone here. That is usually fine except for the times when it isn't. For instance when deciding what to do when he runs a high fever or I have to clean him up now and I can't lift him. I can manage to roll him onto his side. The problem is those times are unpredictable. I have been telling the nurse and social worker is it difficult and what I get back is I'm doing a terrific job in a situation where we are helpless to change the outcome.

I was too tired to answer this last night and I have been busy all day until now. I had a day out today. My Red Hat Group went out for Tea with finger sandwiches, scones, Devonshire Cream, stuffed Cherry Tomatoes and Snow Peas, Carrot and Dill Soup and Cranberry Triffle. It was nice to get away for a fun event. I really am comfortable with the Hospice Volunteer. She is very good with Dick and she fed him while I was out. He ate more than usual. He loses more functions every day.

The book was helpful in letting me know how the decline might happen. He slept all day yesterday and I was comfortable with him doing so. I think the latest increase in pain medication was the reason.

I think I am mentally prepared for the next few weeks but I could be surprised. I know that it will get worse and I will have many more weepy days. I am just trying to not feel so angry.

I am sorry your Mom is on life support. I take it this is quite sudden as you were saying you were going to visit them before Christmas. You are right it is a blessing that we have talked about our feelings and what we want. I am clear about what Dick wanted. All you can do is let your Dad know you support what ever decision he makes. I am very thankful that my Mom and Dad had talked so that Mother knew when he had the stroke that he would not want to be kept on life support. My sisters and I all agreed and welcomed the idea of Hospice for Dad when he was in a coma after the stroke we could tell he wasn't with us. I did see a friend of mine get off the ventilator when the hospital staff was convinced she couldn't but we can't know that when a person is receiving that type of care.

I'm thinking of you and sending good wishes.
Julie

Volunteer Coordinator
ABLSC

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11 years 3 months ago #22872 by Stephany
If by "doing it all", you mean being there for him, and trying to get him to eat some good food, and listening to his breathing, and making him comfortable, keep on doing it, Julie.

If by doing it all, you mean trying to make everybody believe you can handle it, and you are strong, and you don't need help, then you might want to take a break. Read that booklet again, and let the tears come. It makes you weepy doesn't it? Those tears are because you can tell that someone else felt the pain you do, and because someone else has been there, where you are, and where you are going. It's because you recognize that there is reason to be sad, and to feel the pain, and that there is relief in knowing that.

I'm sorry to ramble, my friend Julie. I wish I could take the pain away, that I could say, "tomorrow, it will be better." I wish I could sit beside you, and watch you hold Dick's hand, and cry.

Just know that I'm thinking about both of you.

My dad called tonight, and said my mom is on "life-support" and he doesn't know what to do, or how to handle it, and he wanted me to tell him. I wish I knew. He and Mom never talked about how to handle this time of life, and all I could do was be glad that Doran and I talked about it all the time. I'm not telling you that to talk about my problems, but to remind you of the gift our husbands gave us, when they shared their lives, and fears, and hopes.

And you and Dick have talked about it, too, and you know how he felt about it, and you can remember those talks. Hold on to those memories, and they'll help you now.

Stephany in Iowa

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11 years 3 months ago #22861 by Webs
(((Julie))) I wish there was something I could do. Sorry I havn't been around much. I should be on more now. You are in my thoughts.

Charlotte

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11 years 3 months ago #22853 by Julie
Dick started groaning and talking in his sleep about 6 this morning. He was having a lot of pain so I got up and gave him the oxycodone for breakthrough pain. He didn't seem to have a fever then but within the hour it was up to 102 again. His breathing was really raspy so I gave him a nebulizer treatment. I was really short of sleep. I think I got all of 3 hours.

Today has been a weepy day here. Today is my Dad's birthday and i was thinking about him as well as what Dick is going through. The Nurse and Social worker came over and we talked about respite care. I said if I had 3 days where I was short of sleep then I would have him go to respite care. I just have to stop trying to do it all.

They also gave me the booklet "Gone from My Sight." which is helpful but set me off again.
Dick is drinking some egg nog right now with out alcohol. He likes the flavor earlier he drank some Kefir. These are made with real food not ersatz. He doesn't eat more than 1/2 a cup at any time.
Hugs from Arizona
Julie

Volunteer Coordinator
ABLSC

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11 years 3 months ago #22831 by Stephany
I'm so glad you're "dancing" again, Julie. I had a couple of sad spells this weekend, and I'm glad you're having these times with Dick. Did you make smoothies? Maybe that's what's got him up and walking!

How's his pain?

It's cold here in Iowa...really cold, as you can imagine.

Hugs from Iowa.

Stephany in Iowa

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