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Hanging out with Hospice, the first part


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Stand4hope, you have encouraged me yet again. I decided to do a little update.

Hmm, a bit about hospice. Hospice people came Wednesday, lots of forms, questions, answers, met with the nurse and social worker, took about 4 hours. The RN will come twice a week. The social worker will come twice per month, more if needed or wanted. Home health care aide and chaplain and volunteers are available as needed. Think I am going to see about a once a week volunteer and take myself a library afternoon. They are going to bring us a hospital bed, easier for Jim to get in and out and up and down in, and a wheelchair with a bracket for his oxygen, so we can go for walks outside if ever the weather improves, and a better shower chair than we have now. Stuff didn't come yet but I made a place in the living room for the bed, right in the middle of everything. Jim will have two TVs in here, the satelite one and the local one with rabbit ears. And music and whatever he wants, of course. The experience continues much the same, up and down, but now the goals are changed. The goal is "don't worry, be happy." I guess. If we have concerns we call them, not 911. If something happens, I call them and they come here and help us. In our case, they pay for the meds but we still have get them from the drugstore ourselves. Things are a bit more regulated than we are used to, for example, if Jim changes meds, the nurse wants the old meds and will destroy them with me to witness. Hmm, just like in hospitals and all. I am more used to independence on things like that. I think maybe they are more used to dealing with the elderly?

We both felt a bit baffled at first. Look at each other, shrug, huh? Initially, Jim felt a lot happier, felt like he had more in his control now, if he ate well, took care, his health was more in his own hands. I kind of don't know what to do with myself. All systems will change I guess, all the piles of paperwork can be filed away. I haven't done that yet. This still seems like an on-going project, and of course it is. It is just a change of philosophy. I feel a bit adrift, until I get used to it.

Physically - more sleeping, more tiredness, more short of breath. By Saturday, Jim had difficulty getting up and walking to the kitchen without losing his breath. We raised the oxygen from 2 to 3 and broke tasks into smaller increments. More anxiety. More - fogginess. I got a calendar and put by the bed and we write down who came, who called, which day, and cross of the days when they are over. It helps. Lots and Lots of company. Short visits are good. I am not on the email much as a lot of the day we spend together, him in bed, me in a rocker next to him. I have been doing markers and fuzzy posters, not that I am that good at it or really needed fuzzy posters but it is a kind of easy way to pass the time and I get to make decisions on what color I want that flower, etc. Jim cheers me on, ha, ha. When I am out and about in the house, and I peek in on him, every darn time he opens one eye and looks right back at me. He says it is like how you can feel when people are sneaking up on you. He is so cute. Grin. He does need some checking, too, he pulls his oxygen off sometimes when he is sleeping.

I like to get up in the middle of the night and check this board. I wake up a lot anyway and everything is quiet here at home. I always did like early mornings, before the day's activities get started.

We are okay. It has scarey moments, but this whole trip has had those moments. Love to all, Margaret

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As you go through this new journey, it seems to me you have made all the right choices to make it as good a time for you both as possible. I know inside your heart is breaking and you can't even let him see,(though he does) but you are doing it in a beautiful wonderful way, I will pray for you to have the strength to see this through and that it be as easy a journey as possible for your beloved Jim.



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Margaret, as always I am sorry to hear of Jim's continued and worsened short of breath.Glad your able to be together and amazed at your strength and fortitude.You are both tremendous inspirations to so many of


I think once you can get used to the added activity in your home it will be much easier for you,& afford you even more time with Jim.

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Wishing you peace, strength and love.

For Jim: when he goes to sleep, just tape the tubing to his cheeks,

that is what I did for Mike as he was always pulling his oxygen of

during the night.

It worked well.

Will be thinking of you and Jim.

Sending prayers.



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Dear Margaret,

I think of you and Jim so often and send prayers that God grants you what you need at this sad time.

I found that hospice gave me the peace of mind that I needed during the journey. I was glad to know that Earl would not be in pain or have undo anxiety.

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