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10 years 10 months ago #22969 by Julie
Clara and Stephany

Come back soon Clara I am pleased you stopped by to post. I agree I found it is much easier just to use the pads. The slanted pillows are a great idea for support. I can turn Dick on his side but it is the side the cancer is on and it is painful for him. I do hope you are getting adequate rest sleeping on the couch. That is what i would have to do if we put him in the Living room. I too find it hard to see my husband so helpless and barely able to take liquids. Perhaps it is the bodies way of protecting them from what is happening to them. The Hospice nurse told me that everything slows down as if they are hibernating.

I probably wasn't clear, the oxygen concentrator is in the dinning area with a long tube going to the bedroom. So the bedroom is relatively quiet now whereas the living/dining area is noisy. The furnace is in the laundry area next to the dinning area and when the fan is on it adds to the noise. I will phone the place where we bought the bed to find out if they can make the bed higher. That really would be the best solution.

Dick slept all day yesterday. Just before bedtime he was alert enough to say a few words. I'll see how the next two days go as I think the higher dose of Fentanyl is a large part of his sleepiness. This seems to be what he looks like when sedated. He runs a fever everyday but with Tylenol and a fan I can get it down. He had a comfortable night but started groaning about 7 this morning. This seems to a regular pattern now. At least it is starting at 7 or 8 instead of 5:30 a.m.
Julie

Volunteer Coordinator
ABLSC

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10 years 10 months ago #22963 by Stephany
Julie...here is an idea that might sound a little crazy at first, but hear me out.

Is there a way you could get someone to come and put the bed on risers? do you know the kind I mean? They are sold to raise beds so you can store stuff underneath. They are hard plastic, and they sit under each bed frame leg.

If you could get someone to put those on....just raise each leg one at a time and slide them under, then the bed would be higher, your health care aide would be happier, and Dick could stay in the bed.

That's one issue. Next issue is the oxygen generator: How long is the tube you are using? Is it long enough that you can put it in another room, and still have the oxygen to the bedroom? If not, get a longer tube, and you can keep him there. You might just have to find something to put over the tube, to keep you from tripping on it. I used the wheelchair.....I just parked it right over the tube, so we had to walk around it, and it reminded us to avoid stepping on it.

If you can raise the bed, and keep the generator out of the bedroom, you could maybe still have the peace and quiet of the bedroom, and be able to share the bed.

Do these suggestions make sense? I sure hope so.

I'm going to send a little more privately.

Stephany in Iowa

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10 years 10 months ago #22962 by Clara
Julie, Stephany, Karen,

I have not been on in awhile but decided to see what is going on and as I read this, realize how much I miss my friends and support group.

My heart goes out to all of you as I too continue to look after Bob.

Several years ago, Bob enclosed our carport for a den big enough for all of our children when they come in. We have enjoyed that room so very much so when we came home from the hospital in Sept. and Hospice came in behind us, we just had the bed set up in there for Bob and I have slept on the sofa ever since.
Bob became completely bedridden about a week after we came home so we did not have a choice of moving him anywhere else. I have my bed rolled up like a sleeping bag every day and just put it back out at night. Whenever I need a nap and have a chance for one, I just lay back in one of the recliners and sleep. Bob is still sleeping all night.

I do have a hard time turning Bob to change him and I have found it is much easier to just use the pads on the bed. He wears hospital gowns and we do not even tie them, just tuck them up around his neck and under the pillow.
A friend brought two big slanted pillows that have been a great help in supporting him on his side for me to change him. At first, I used the pillows to hold him over when I turned him but now he cannot lay on his left side except just long enough for me to change him because it hurts his right arm and shoulder so badly.

He cannot even turn his head to the left. His right ear stays sore because he lays on it so much but the Hospice nurse brought me something that acts as a barrier when we rub it on the ear and does help.

I have no idea how much Bob weighs now but he has certainly lost a lot of weight. Eats very little, never gets hungry. I am starting to see a little confusion now but mostly it seems as if he has been dreaming but never remembers dreaming.

I too follow the book to try to figure out what is going on. It should not be much longer and it is so sad to see an active man laying so helpless now.

My heart goes out to all of you along with love and prayers.
Clara

Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007

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10 years 10 months ago #22951 by Julie
I suppose there is no right or wrong when it comes to the hospital bed in the LR. The Home Health aide would like to be able to raise the bed as it is hard on her back and I can sympathize with that. I usually sit next to the bed when I take care of him. However it is more comfortable emotionally to have him in our bed.

I wish my bathrooms were big enough to have the oxygen concentrator in them. I also have a shortage of outlets to plug into as we like our electronic gadgets.

Today he is semi conscious and is having trouble with swallowing liquids let alone any pills.
I told the Home Health Nurse this week that I would like to stop the Procrit shots after the end of the year. His hemoglobin did not go down this week so it is 8.1. His platelets were lower down to 81,000 which is about half of normal. He doesn't move much in bed and has tender spots on his heels so I have put a pillow under his legs so they feet are elevated off the mattress.

Perhaps those of us who have written about how we have solved caregiving problems could list them and place them in the information section. Julie

Volunteer Coordinator
ABLSC

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10 years 10 months ago #22921 by Stephany
Let me respond to that last part, Julie, and then I'll "take your question off the air...." as they say in radio land.

I had them put the hospice bed in the living room, and that's where Doran stayed until he died.

If I had it to do all over again, I would not have done that. I would have worked to get him up to his own bed, and left him there.

That said, I cannot predict what would happen if you do move him, but I still feel that if I had gotten him into our own bed, I would have been a little easier with the whole situation.

Yes, it was easier to clean him up, and yes, it was closer to the door and kitchen.

But....., and this is a big but......., if he had been in our bed, I would have been able to sleep closer. I would have been able to be in the bed with him, and that would have comforted both of us. And he would have been closer to a shower, if he wanted one. I had to deny him that comfort the last few days of his life.

Maybe he would have slipped in the bathroom. Maybe he wouldn't have been able to be as safe as in the hospital bed.

But, I would have had him closer to me at the end.

There, that's my two cents worth.

And you're right, the oxygen concentrator is TOO loud. I put it in the bathroom, and used a really long tube.

Stephany in Iowa

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10 years 10 months ago #22919 by Julie
It seems I will continue to be puzzled by Dick's situation. Yesterday he was alert and ate some soup. By evening he didn't want any food and was uncomfortable. Today he was semi comatose and doing a lot of moaning and wheezing quite a bit. He finally woke up about 3:30 just before the Hospice nurse stopped by. She said this is likely to continue and it will unpredictable as to when he will have a bad day.
I learned something new. I needed to change Dick's nightshirt (an extra large T-shirt) and the Nurse said that the Home Health Aide would cut the shirt up the back to the collar so that it was easier to put on and also the back of the shirt won't get soaked.
I am thinking about using the Hospice respite bed over Christmas while my son and family are in town so I can spent some time with them. Dick needs to have someone with him all the time and I don't want the 9 and 12 years old to be overwhelmed with how bad their grandfather is doing.

I am mulling over the idea of a Hospital Bed in the Living room. It would be a major upheaval in the LR and if I slept in our bed he would be alone at night plus it is very noisy in our living room because the oxygen concentrator makes a lot of noise and it sounds like a monster breathing in the corner as it puffs every few seconds. it is quiet in the room he is in now unless he wants some music. I am not in favor of the idea so I would need a compelling reason to make that kind of change. Julie

Volunteer Coordinator
ABLSC

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