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Puzzled
Dick had about 3 good days in a row. Sunday we spent the afternoon together watching TV. This morning he was cooperative about his medication and inhalers. We had a discussion about whether he was up to going out for a chest x-ray. We decided that it was better that he stay home. Then we talked about the possibility of draining fluid from his lungs for comfort and whether or not he would want to have that done. We left it that for now the decision is no but we could change our opinion if the benefit of comfort outweighed the risk of the procedure. He ate very little for breakfast as he was falling asleep. By the time the hospice nurse arrived he was having trouble staying awake. She also observed his breathing is very shallow. Later he was restless and when I helped him get up he had lost his knowledge about his routine. He couldn’t use a straw for water or juice, he had problems swallowing and seemed very confused. He kept pushing away the water. I have no idea what caused this change. He has had periods of confusion before but they were related to fevers, bladder infections, or low blood sugar. This time none of those reasons applied.
I don’t know if this type of confusion has been seen by anyone else caring for someone with metastatic cancer. All I know is that i get somewhat frantic when I can’t get him to take his medications and can’t get him to drink enough water. I have run out of ideas on how to get him to take his meds. He also becomes verbally aggressive when he becomes irritated with my repetitions of requests for him to take his pills or take a drink to help swallow the pills. He holds onto the water mug but doesn’t bring it near his mouth or if he gets it near his mouth he takes it away before drinking. I can only think of how much worse it is going to get.
Volunteer Coordinator
ABLSC27 Replies-
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
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
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
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
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
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
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
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
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
(((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
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
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
Julie–
I just tried to reply to your e-mail reply to me, but it bounced back from the on-site e-mail. I’ll try again later, but just wanted to let you know you and Dick are in my thoughts. Loved your description of the two of you walking/dancing!
Ann
Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
This was another good day. Dick was awake for most of the day and evening. He spent most of it watching TV. This evening he even ate some real food. After reading the list of ingredients on the bottle of Boost I am going to do more smoothies for him to drink as it will be real food and not a bunch of supplements.
He was so funny this morning. He said he was going to start an exercise program. I said OK what exercise do you think you could do. He said walking. Then he walked from the chair to the bed holding on to me the whole time. I usually refer to it as dancing as we are holding hands or I’m holding his torso. We practice turns so he can back up to the bed before sitting down. Julie
Volunteer Coordinator
ABLSC
(((((( hugs )))))) Julie, hope you are ok, thinking of you .
Take care
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